Saturday, August 1, 2009

Chromogranin A

Chromogranin A (CGA) is one of the most important tests in the diagnosis of neuroendocrine tumors. Unfortunately, it is also one of the trickiest tests to interpret. I am asked very frequently by patients and colleagues on interpretation of CGA.

CGA is a protein. It is produced in neuroendocrine cells and released into the circulation. CGA is metabolized to fragments and cleared by the kidney. CGA is actually a hardy protein. It is very stable in serum at long incubation at 37°C, or even after repeated freezing and thawing. It reflects the cumulative secretory activity of all those cells. So CGA can be elevated by any of the many types of neuroendocrine cells. CGA indirectly reflects tissue or tumor mass. CGA is elevated in most patients with pheochromocytoma or paraganglioma.

Several issues need to be considered when interpreting the CGA results. One problem is that the reference range differs among labs. In Quest, the upper limit of normal is 36 ng/mL, while in Labcorp, it is 5 nmol/L (equivalent to 245 ng/mL). The Quest test is more useful. (Note added on July 26, 2010: One reader contests this point. Please see comment 25 and others.)

CGA can be elevated in benign and reversible conditions. In a type of gastritis (atrophic gastritis), acid production is decreased, which in turn stimulates CGA production from the stomach.

The most common cause of elevated CGA in clinical practice is anti-acid treatment, especially proton pump inhibitors for acid reflux. CGA will increase even after days of PPI in healthy volunteers. The prevalence of elevated CGA is common in patients on PPI, and more than 60% patients on PPI have elevated CGA after 4 years.

Because CGA is cleared by the kidney, CGA is elevated in kidney failure.

CGA can be elevated in several other diseases: hepatocellular carcinoma, prostate cancer, adrenal incidentaloma, pituitary tumors, and rheumatoid arthritis.

In summary, CGA is an important marker for neuroendocrine tumors. In routine clinical practice, the most common cause of high CGA is anti-acid treatment. Kidney failure and atrophic gastritis are also causes of high CGA. In a patient is not taking anti-acids or has chronic kidney failure, high CGA levels raise suspicion of neuroendocrine tumor or other tumors, including pheochromocytoma.

Obviously, CGA is not specific for pheochromocytoma and is less important than metanephrines in the diagnosis of pheochromocytoma. CGA can be used in combination with metanephrines to increase diagnostic accuracy for pheochromocytoma.

Dr. Pheo

182 comments:

  1. Why do you say that Quest's test is more useful than LabCorp's?

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  2. The upper limit of Labcorp's CGA is too high.

    Dr. Pheo

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  3. Is there any diagnostic value in CGA for differentiating between pheo vs. paragangliomas without the benefit of imaging.

    Would the general advise be if the metanephrines or catecholamines levels are indeterminate. Retest and include a CGA test. If the CGA is high and other factors for high CGA are excluded, the presence of pheo is highly likely.

    Is there a point where metanephrine levels can become somewhat useless because of high or stable levels and CGA can be used to monitor tumor activity?

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  4. Hello Dr. Pheo. I posted the following on an earlier entry before I read that you would like us to post under the more recent entries. I apologize for the duplication:

    Hi Dr. Pheo. What do you think of the Octreoscan? I recently had a plasma-free metanephrines blood test come back with about four times the normal levels. My dr. consulted with some radiologists here in Tallahassee and they decided this was the best next test. I am in day two of scanning and am curious if I will get kicked back for an MRI regardless of what the Octreoscan uncovers.

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  5. Dear DJPheo,

    I don't think there is a value for CGA to differentiate between pheo and para.

    I agree with your second point.

    For pheo, metanephrines will remain the primary test. CGA is not as specific as the metanephrines.

    Dr. Pheo

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  6. Dear rosecp,

    Octreoscan is not a very useful imaging test for pheo. It is not as sensitive as MIBG or FDG PET, and the specificity is not known. Octreoscan only has a secondary role for pheo localization.

    You should start with abdominal CT or MRI, followed by MIBG scan.

    Dr. Pheo

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  7. I posted this somewhere else originally and then read to post under recent postings:

    I have had one pheo/para removed in 06 from near my spine and 3 removed in 09 from the same area. I have several small tumors that were not removed. I am currently on a once a month shot of Sandostatin. My Dr. is on your list of Dr. Pheos but have been thinking about a second opinion from Dr. at Mayo prior to seeing your list. I have been waiting since my March surgery to have additional treatment. My Dr. wants to put me in the Azedra study at the Univ. of Iowa. Just anxious to get treatment and frustrated with the wait. I've been reading a lot about different treatments and I am confused by all the information. Since I saw my Dr. on your list I am more confidant in his expertise, but would you recommend a second opinion?

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  8. Dear Steve,

    Having a second opinion is always a good idea for a complicated disease. At least it can be reassuring.

    Dr. Pheo

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  9. Dear Dr. Pheo, My husband is having a hard time excepting all this. He will not get online and research and has his own interpretations. Today he told me that he knows his pheo is really bad because has some on his diaphragm. His reason for this is because it is a muscle that moves constantly which would irritate the tumor, make it spread and grow faster, sending more "seeds" into his body to grow more tumors. I asked him how he knew this and he said he just knew. Is this an accurate description of how pheos/paras multiply? Thank you for your help.

    Kim wife of Steve

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  10. Dear Kim and Steve,

    Although Steve's theory is not unreasonable, there is actually no real clinical evidence to support it. The metastasis of pheo and para is poorly understood and research is going on to address it. I believe that the nature of the tumor, rather than where the tumor is, dictates whether the tumor spreads. Where a pheo spreads to is rather unpredictable.

    The most important thing for Steve is to find a pheo expert and to be treated by the expert. Having a pheo in the diaghragm does not mean it is really bad.

    Dr. Pheo

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  11. Dr. Pheo, in the way of update, the Octreoscan was indeed not indicative of a pheo. My GP ordered up another fractionated plasma free bloodtest. Maybe not so surprisingly, LabCorp botched the sample (they did this the first-time around as well) and I had another sample drawn this past Friday. Somehow, I am back to square one, awaiting blood-work. My GP indicated that he supspects these results will too be indicative of pheo and then he will order an MRI. Thank you for your earlier response and for this blog. You have been most helpful. By way of question, do you think it is worthwile to seek some sort of second opinion regardless of what this most recent blood test shows? Thankfully my health plan has an affilation with Moffitt down in Tampa.

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  12. The issue of laboratory quality control is very important. Unfortunately, because of the Clinical Laboratory Improvement Amendments of 1988 (CLIA) and HIPAA, the labs are unable to talk with me, even though I am have expertise in laboratory quality control and have published 13 articles on aspects of laboratory quality control (11 of them peer reviewed). Is there any doctor involved with pheos/para who has an active interest in laboratory quality control?

    As you recommended in one of your replies above, I see two doctors for my metastatic paragangliomas so that I am getting second opinions. The "second opinion" doctor is one of those on your list. He has explained that he trusts Quest's Nichol's Lab and has not thus far responded to my requests to ask them for explanation of seeming spurious results.

    My primary doctor uses Mayo Clinic for the laboratory tests. Only one assay for CGA was done prior to the last confirmed metastasis. That metastasis was not detectable with the CGA (0.64 of the upper of limit of normal prior to surgery and 0.755 146 days after surgery). I did not see the second opinion doctor on your list until after my last surgery.

    After I began seeing both doctors, the three tests at each of the two labs over a 146 day time span matched closely. The assays were between 0.5 and 0.9 of the upperlimit of normal and overlaid each other when normalized and even showed the same small inflection.

    Then the Quest values skyrocketed upward to as much as 3.7 times normal in 93 days, before dropping to 1.6 times normal in another 49 days. There were 2 assays on the rising trend and 2 on the declining trend.

    The second opinion doc, was very concerned and ordered an MIBG scan, which found nothing. A previously scheduled CT scan also found nothing. Only one of the fractionated metanephrine values was elevated (a serum normetanephrine value of 1.6 times normal).

    The Mayo Clinic data at the beginning and end of this Quest Diagnostics/Nichols's Lab peak are essentially unchanged. My fractionated serum metanephrines as measured by both labs are in the middle of the normal range. The Quest 24 hour urine is now also in the middle of the normal range. It sure looks to me as if Quest's CGS assays were seriously in error, but no one has explained to me what Quest/Nichol's Lab has been doing wrong.

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  13. Dear rosecp,

    Once you have the blood test results, you should seek a second opinion from an expert on pheo.

    Thank you for the compliments.

    Dr. Pheo

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  14. Dear Eve,

    You just touched upon a not-uncommon issue: laboratory errors. Not only for CGA, metanephrines are also subject to unexplained errors. According to my own experience, the best way to solve the issue is to have the doctor who personally ordered the test talk with the lab director about the issue. The labs respond in about 2/3 of times in my experience but you have to be patient and persistent.

    As you probably know, there are a few kinds of lab errors. Some are systemic, some are random, some are just mistakes. It is pretty hard to figure out exactly what causes the error most of times. As the lab quality control is a complicated issue, I guess not a single doctor or patient can do much about it. From clinical care point of view, it is utmost important to take clinical, lab, and imaging info all into consideration before a decison is made.

    Dr. Pheo

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  15. Dear Dr. Pheo, What is the difference between a pheo and a para? I thought they were the same other than para means a pheo outside of the adrenal glands whereas a pheo can be on the adrenals or outside.

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  16. Dear Steve,

    Pheo and para are essentially the same thing. Pheo usually means a para inside the adrenal gland. Para can be anywhere in the body. Some paras are not functional (not causing hypertension). Most pheos are functional.

    Dr. Pheo

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  17. With regard to your response on the difference between pheos and paragangliomas, I thought that abdominal paragangliomas were more likely to metastasize than pheos.

    After the surgery to remove my retroperitoneal paraganglioma, my doctors assured me that it was not cancerous. Following my discharge from the hospital, I obtained all my medical records and saw mention of a lung nodule. Questions about the lung nodule, led to surgery and determination that the nodule was a metastasis of the abdominal paraganglioma.

    Since I was now diagnosed with cancer, I did a lot of reading and discovered quite a few publications indicating that abdominal paragangliomas tend to metastasis. Some doctors think they always do.

    My abdominal paraganglioma was only 2 cm. The lung metastasis was documented to have not grown in 8 months. The metastasis was the same size as the primary abdominal paraganglioma. The metastasis was only detected with imaging, it did not show up in the CGA or the plasma or urine fractionated metanephrines.

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  18. If we count all abdominal paras, the malignant rate is about 10%, a figure similar to that in adrenal pheos.

    In patients with abdominal para caused by SDHB mutations, the rate of malignancy is higher. I suggest that you do genetic test for SDHB mutation.

    Dr. Pheo

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  19. Dr. Pheo, if you don't mind, I have a couple of lab results to run by you. These are Labcorp results for Metanephrines, Fractionated, Plasma Free blood tests with the following referance intervals: Nortmetanephrine - 0-145; Metanephrine - 0-62. On July 17, 2009 the levels were Nortmetanephrine 567 and Metanephrine 332. On August 14, 2009 they were Nortmetanephrine 19 and Metanephrine 44. This seems very bizzare to me and my dr. He is in the process of referring me to a nephrologist or other expert in our area with experience in pheo, but the results have us both curious in the meantime. Could the initial results have been an aberration? Thanks for any insight you can provide. Rose

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  20. Dear rosecp,

    Believe it or not, these big differences in metanephrine results are not uncommon. The most common causes are medication interference and measurement errors. In most cases, getting a third measurement from another lab is unavoidable.

    Dr. Pheo

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  21. A recent topic on a pheo support forum got me thinking on another question. I've been to quite a few doctors and talked about pheos with them. Some seem to believe that the amount of catecholamines will dictate the size of a pheo, while others believe pheos the size of a pinhead can produce the same levels as a larger one.

    What's your experience in relation to pheo size and the production of catecholamines?

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  22. Roughly speaking, size matters for pheo. There is generally an agreement between tumor size and tumor marker levels. Very small pheos (smaller than 1-2 cm) usually do not produce enough catecholamines so that the tumor markers are normal and the patients are not clearly symptomatic.

    On the other hand, small pheos are still pheos. Although they may not cause many symptoms most of the times, when provoked (by surgery, emotions, drugs, etc), small pheos can also cause hypertensive crisis.

    Dr. Pheo

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  23. Dr. Pheo Outside of a CT w/contrast and a PFM, what if any additional dx tests would you order for a person with hx pheo, normal tensive, - PFM, - 24 hr catecholamine, - basel cortisol, and suspicious <1cm mass? How does one rule out a baby pheo? Or if it is a baby pheo, when best to operate. Surgeons aren't keen on operating on something so small that could be just a benign something. "Physician do no harm"

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  24. DJPheo,

    It is an important question. All markers can be negative if the pheo is indeed small. In this case, the imaging characteristics of the small mass becomes critical. The Hounsfield units of the mass on CT, the signal intensity on T2 imaging of MRI, and the contrast enhancement on either CT or MRI, all should be considered.

    On the other hand, I do agree with the surgeon in that there is no urgency in getting the small mass removed. There is time to monitor the mass further.

    Dr. Pheo

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  25. You stated,

    "One problem is that the reference range differs among labs. In Quest, the upper limit of normal is 36 ng/mL, while in Labcorp, it is 5 nmol/L (equivalent to 245 ng/mL). The Quest test is more useful."

    You followed this by posting in the comments above,

    "The upper limit of Labcorp's CGA is too high."

    I would think you as a Dr. would actually do some research before posting your OPINION as fact. You are right that 5 nmol/L of Chromogranin A is equivalent to 245 ng/mL. A different kit, however, can be used for CgA testing at each individual lab. Labcorp uses EuroDiagnostica which actually has a better sensitivity at detecting neuroendocrine tumors than the other two (a greater rate of false elevations). You need to look at the following study: http://joe.endocrinology-journals.org/cgi/reprint/177/2/337.pdf

    Please change your information to reflect this before others who google their LabCorp test results see what you have said and think that their CgA levels are way too high.

    According to your logic, I would never send anyone to LabCorp either. Their normal range is 0 - 5 nmol/L. According to you, normal for them should be 0 - 0.735 nmol/L. Would a repuatable lab ever put into place a system THAT flawed... come on...

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  26. Dear Johnathan,

    Thank you for expressing your opinion. As you have observed, the contents of my posts are indeed my OPINIONs. As they are my personal opinions, you may agree or may not agree with them. Your arguments have not changed my opinions. In the future, if I do change my opinions on this issue, I will change the contents of this post.

    I did not say that the Labcorp test is not useful. Of course it is useful. I just said the Quest test is more useful in practice.

    Dr. Pheo

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  27. So you think that the normal range for Labcorp should be 0 - 0.735 nmol/L? You think anyone diagnosed above this has a serious potential for neuroendocrine tumors?

    The CgA levels between the two tests cannot be compared as they come from different sources as stated in the study (off of E. coli vs. out of human urine). The different tests use comparison sources of CgA with different molecular weights yielding different comparison or normal values.

    I will agree with you that doctors have every right to choose which lab they get tests from. I wholly disagree, however, that you seem to state that Labcorp's test normal limits are higher by a factor of 7 then what they should be. This was my argument in the first place. If you truly believe this I would like some sources of information (unless you just want to state its your opinion).

    If, however, you are just stating that you prefer Quest over Labcorp and their tests are comparable then fine, your opinion. But please clarify for my sake and your reader's what exactly you were trying to say.

    I'm not trying to be difficult, I respect your opinion as a doctor. I'm just trying to find where you get if from. I'm an engineer, and in our world facts, studies and proven solutions rule - not opinions.

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  28. Dear Johnathan,

    I have added a note in the post to bring reader's attention to your arguments. Please feel free to express your opinions or facts in this blog. I will not further respond to your comments on this particular issue.

    Dr. Pheo

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  29. Dr. P. -
    I am at the diagnostic phase. 3 yrs of sudden weight loss, weirdly spiking bp/pulse etc. Finally have become symptomatic enuff that 3 of my physicians have independently suggested testing for pheo (internist, cardiologist and gi - all within 6 weeks!). New GI is cornell-weill and quite good. got results faxed to me, but do not know what levels above "offical statistical range' are possibly significant. Specifically for Chromagranina-a (83 ng/ml) and neuron specific enolase 9.5 ug/L. no other results that i can get from dr yet (metnphrn, catecholms etc. dn't know if he gave them - too busy to contact easily, tho hve tried) obviously gi did not think significant, or else wld hve contacted me. clearly not severely acute, but wld rather avoid that. given the fact that i'm increasingly symptomatic over time, what is the range for suspicion for these two factors? googled and googled it, and can't get info. Edith.

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  30. Dear Edie,

    Chromograin A is probably elevated (normal is usually less than 36), but you have to check with your doctor what the reference range is. For pheo, chromogranin A is not specific. The most common causes of elevated chromogranin A are anti-acid medications, atrophic gastritis, and kidney problems, followed by all kinds of neuroendocrine tumors.

    Dr. Pheo

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  31. Dr. Pheo,

    Thank you for this blog! I received my Lab Corp Chromogranian test back and it was a "4". Should I seek another test or be concerned. Lab Corp Chromogranian Chromogranian Test normal range is 0-5

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  32. Dear Relax,

    The result should be considered normal. Chromogranin A is not a definitive test for pheo. Plasma metanephrines are best.

    Dr. Pheo

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  33. Hi there, I desperatly need your help! my chromogranin A is 200 ng/ml. I have had a positive clonidine suppression test and below are the lab values;
    Norepinephrine PL 872 pg/ml(0-399)
    Catecholamine Tot Pl 974 pg/ml 90-642)
    Normetanephrine Pl 411 pg/ml (18-111)
    Everyone suspects a pheochromocytoma but have yet to find anything, expept for a positive Octreotide Scan with uptake at the head of the pancrease, yet no-one seems to know what to do next! Please help!

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  34. Dear Falisa,

    Please tell me your age, sex, and symptoms. Also what imaging you have exactly done.

    Dr. Pheo

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  35. Dr Pheo,
    I am one year post-resection for a carcinoid tumor in my appendix. It was removed with clean margins and was 1.5 cm. There was mucus on the serosa of the appendix, which was determined by Hopkins pathology to be from a ruptured diverticulae in the appendix. Doing my follow-up testing at a year, most of my tests came back as within the normal range. My CgA from LabCorp was 5, but there was a disclaimer on the report saying that it was not to be used for daignostic purposes, that they were still using the information for research. I am not on PPIs, antacids, etc., do not have gastritis or other complicating factors; additionally, I am a 36-y-o female. Would you recommend retesting with Quest? Also, my 5HIAA test could not be done since my urine pH was too low. Could this be from not drinking much water that day? Would you recommend re-testing for that? Right after the re-section a year ago, they were able to do that test, and it came back fine...
    Thank you.

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  36. Seltzerboy,

    I do recommend retesting with Quest. Urine pH is affected by many things but dehydration is a factor. I think retesting 5-HIAA is a good idea.

    The prognosis of appendiceal carcinoid is largely dependent on the size at the time of resection. Your size is in the middle. Please ask your doctor whether your appendiceal carcinoid appears more like a small (<1 cm) or more like a large (>2 cm). I suspect that it is more like a small one as your doctors did not do hemicolectomy. If that's the case, prognosis is very good.

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  37. Thank you. I will ask to retest CgA with Quest and already am planning to retest 5HIAA. Can you please explain what information we would gain by asking if the carcinoid appeared small or large if we already know that the tumor was mid-size at 1.5 cm? In case this helps answer your question: the tumor was an incidental finding, found through pathology, not visible to the general surgeon who performed the appendectomy.

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  38. Seltzerboy,

    I am sorry for my vague language. What I wanted to say is that if the tumor exhibits features consistent with those of large or small tumors. Most aggressive featurs include invasion of nerves or blood vessels, involvement of serosa, and high mitotic rates.

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  39. Dr. Raj - 40 yrs. old, staying in Mumbai, India, without any risk factors and chronic illnesses or family history, got incidental finding of a tumour in the tail of pancreas in sep 2010, 2.5cm x 2.5cm, underwent distal pancreactomy on 18 Nov., R-0 resection, margins and lymph nodes are fee of tumours, diagnosed as Neuro endocrine tumour. post operative recovery is good, CGA levels were 300 nanogms post Sx. normal range at Lab is 100 ngms. MIB factor is 3%. my specialtist said that it's very low grade tumour. PET before Sx didn't show any activity other than this pancreatic tumour.should I go for Octroscan or should I rely on successive CGA and gastrin levels and a 64 slice CT? what would be the prognosis?

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  40. Dr. Raj,

    What were the CGA levels before operation? Are you on proton pump inhibitors or other anti-acid treatment?

    We routinely do high-resolution CT or MRI of the abdomen and pelvis, and octreotide scan in all patients with neuroendocrine tumors, regardless of CGA levels.

    Best regards,

    Dr. Pheo

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  41. Dear Dr,

    When one is confronted with two CgA test results from two different labs, can one tell by looking at the results (how it is denoted on the report) whether the same test/reference range/counting method was used in both tests? In other words, do the following: CgA (ug/L), CgA (U/L) and CgA (nmol/L) denot which test/reference range/counting method was used?

    And, second question: if both labs come back with a figure and both have CgA (ug/L) as the reference range, are the labs from the two labs directly comparable?

    Regards

    Christelle

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  42. Erratum previous comment, last sentence: are the results from the two tests directly comparable?

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  43. CSW,

    No to both. However, you can get some clinical information even from CGA tested in different labs. The most important point is that CGA is just one of multiple factors to be considered in clinical decision making.

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  44. Dear Dr. Pheo,

    A Lab result: Chromogranin A - 83 ng/ml, lab reference is 40 - 100. Can I trust it ?
    Metanephrines - 80 pg/ml ; upper limit 90.
    Hypertension attacks alternating with normal BP, headaches, palpitations, chest pain, anxiety, eye exam - hypertensive retinopathy.

    In your opinion, should I trust these results or get another test ? Thank you.

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  45. Is there any extra clinical significance with elevated CGA when the patient also has unintended weight loss, cold flushing, and nocturnal diarrhea?

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  46. The symptoms are suggestive of carcinoid. If CGA is truly positive, it adds more to the clinical suspicion.

    Dr. Pheo

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  47. Dr Pheo, This is a very long delay in our dialog. My apologies. I did end up doing the CGA test with Quest and appreciate the guidance. Thankfully, I was in range. It is now time for me to do my annual 5HIAA, CGA, and other testing again. You previously wrote that MR is a factor in determining aggressiveness/whether a mid-sized tumor is behaving like a small or large. I don't see that on my pathology report, only that there was no neuro-vascular involvement and that the mucen did not penetrate the serosa. Do I just drop the MR issue, or is there a way of determining that? Thank you for your time.

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  48. Seltzerboy (I assume),

    The Ki-67 (or called MIB) index reflects the mitotic rate. You can check if they gave you the info on the pathology report. The other marker is called mitotic index.

    Dr. Pheo

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  49. I just had this test done. I received my results online and it says the levels are <1 but are in bold red. What does that mean? I thought a low number was good. I called my doctor but they can't see me until January 25th. I know a high level is usually a bad sign, so why mark <1 in bold red?

    ReplyDelete
    Replies
    1. Dear jensoro6,

      I don't know why it is in bold red but probably because it is out of range. The meaning of low CGA is not very clear but generally it does not mean you have a problem.

      Dr. Pheo

      Delete
  50. Dr. Pheo, I have been going through rounds of grastrin and chromagranin test for the past 9 months. They were both elevated originally. I read that Pepcid could cause elevated readings so I came off it 4 months ago. I have been off of Nexium for 2 1/2 years. My gastrin is now in the normal range, but my chromagranin is 6 from Lab Corp, 0 to 5 is normal. You stated in the original article that it could take 4 years for the chromagranin to go back to normal. Do you think this elevated level could still be coming from the Nexium or Pepcid? My doctor does not seem to concerned. Should I be?

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    Replies
    1. Dear plockamy,

      Chromogranin A levels usually come down in 2 weeks after stopping proton pump inhibitors. In my post, I actually said that most people on PPI will have high CGA after they are on the drug for 4 years.

      The small elevation now probably is not significant. If you are concerned, you can remeasure it in another few months.

      Dr. Pheo

      Delete
  51. I scored a 5 on Labcorp's CGA, but have been suffering from all of the symptoms of Carcinoid Syndrome.

    If you had a patient in my circumstance, would you recommend further exploration or retesting at a later date? I take no antacids.

    Thank you for any direction you may provide.

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    Replies
    1. I suggest testing blood serotonin and urine 5-HIAA.

      Dr. Pheo

      Delete
  52. Dr, my wife had carconide tumour in appendix at it was removed at the time of delivery, after that we hv conducted CgA tests, 1st time it was 148 ngml, then 152 ngml, then 118 ngml & now on 4th April it was 30.35 ngml, the tests are done after every six months, we hv also done DOTATOC PET CT SCAN in June 10 & report was nomad, so pls tell me now it is normal or we have go for any other test.

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    Replies
    1. How big (in cm) was the carcinoid found in the appendix?

      Dr. Pheo

      Delete
    2. As per 1st report, appendix was 7 cm long & tumor was 1.2 to 1.5 cm on the tip of appendix.

      Delete
    3. Her appendix carcinoid has low to intermediate risk of recurrence or metastasis. I would still follow her with biochemical tests and imaging perhaps every 2-3 years. There are no formal guidelines on the best way of following appendix carcinoid between 1-2 cm.

      Dr. Pheo

      Delete
  53. Dr. Pheo,
    I have a question concerning adrenal adenoma and CgA. I was dx with adenoma on 4.11.12. I presented at ER with sudden onset hypertension, severe headache, nausea and aggitation, head ct clean. MRI showed 25x24x20mm adenoma on right side. 24hr urine and plasma catecholamines net. DHEA low, cortisol normal, my CgA is 7nmol/l from Labcorp ref.range 0-5. No antacids, current meds are aderall xr, armour thyroid, topamax,metoprolol and cipro. My concern is the elevated CgA, what is the likelihood this is caused by a carcinoma? I thank you in advanced for your time.

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    Replies
    1. Dear firebaum,

      Please leave your age and sex. CGA can be elevated in people with adrenal adenoma. The mildly elevated CGA by itself in your case does not suggest carcinoma. The most important way of knowing if this is a carcinoma is by follow-up by imaging.

      Dr. Pheo

      Delete
  54. Dr. Pheo,
    I am a 39 yr old female. Some Background medical history that may or may not be helpful-2004 partial hysterectomy due to andenomyosis, psoriasis since childhood, gallbladder removed Sept. 2011. Chronic sinus infections led to sinus surgery just over a yr ago. I do suffer from ovulatory migraines.
    What other type of imaging would you suggest?
    The MRI I had on 4.11.12 states, "on the T1 out of phase images, there is significant signal dropout in this mass, indicating a mixture of fat and fluid in the same voxel, consistent with adenoma. There is a small amount of uniform enhancement in this lesion"
    Again, thank you so much for your time!

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    Replies
    1. Dear firebaum,

      The psoriasis can potentially also cause small elevation of CGA. The MRI features are consistent with adrenal adenoma. Currently I don't recommend further imaging. Instead, I suggest retesting CGA periodically. If you have a neuroendocrine tumor, the CGA levels will continue to rise. Otherwise they will be stable or return to normal.

      Dr. Pheo

      Delete
  55. This comment has been removed by the author.

    ReplyDelete
  56. Dr Pheo,
    I am a 36 year old female with a high serum level of chromogranin a,high gastrin serum level,and low pancreatic poly peptide level. I was fasting for these tests and I was off protonix for more than 2 weeks. My CGa on protonix was 21 through quest,after 2 weeks it jumped to 36 through quest. Results from Octreoscan is negative. Pancreatic ultrasound didn't show anything. I have my GB removed when I was 18. I have chronic diarrhea and taking Welchol to help with that. I have malabsorption issues and unintended weight loss. I also get cold sweats frequently during the day. I can get a short period of light-headedness, and dizziness that lasts about a mite or so. Low BP upon standing and sitting Any ideas?

    ReplyDelete
    Replies
    1. Dear Joyce,

      I am an endocrinologist so I can only suggest potential endocrine causes of your symptoms. Adrenal insufficiency needs to be ruled out.

      Regarding the CGA, the normal reference ranges are important as well. It is very rare to have higher CGA after holding anti-acid treatment. Atrophic gastritis may be an issue. Periodic measurements of CGA my be needed.

      Dr. Pheo

      Delete
  57. Dr Pheo,

    I had a pain under the right ribs cage since two years< and only recently a 1.5 cm duodenal submucosal tumor arising from the third layer of duodenal wall has been found. This was revealed during an endoscopy and biopsy was taken too, which said it was a lieo myoma. But when I went to second doctor, he did a EUS and FNAC, the result of which says: "Cytomorpholgy is suggestive of neuroendrine tumor; however, immunosustaing synaptophysin is not contributory with equivocal staining. Now, I have done serum CGA and Gastrin blood tests. They are found to be within the normal ranges. Can I have carcinoid/ neuroendocrine tumor? I'm afraid a lot. Please help me out.

    ReplyDelete
  58. Forgot to mention a few details. I'm 32-year-old male from India. So far I don't have any carcinoid syndrome. However, I have back pain along with the pain under the right ribs cage, and whatever pain I've got — be it on the front or the back — is at the right side of my body. Doc, just tell me whether I have got neuroendocrine tumor/carcinoid or simply lieo myoma.

    ReplyDelete
  59. Dear Satan,

    The normal CGA and gastrin cannot rule out neuroendocrine tumor in your case because your tumor is very small. Whether this tumor causes the right-sided pain is hard to say.

    Dr. Pheo

    ReplyDelete
  60. Hell, I am a 40 year old male and I have been having facial flushing for 2-3 years now and have had high blood pressure for 15-20 years additionally I have been having back pain that wraps around to my right front side and my right upper abdomen has a weird cramping. I read that facial flushing could be a sign of Carcinoid, so I went to my Primary care Dr and did 5-HIAA 24 hour urine screen and plasma metanephrine. The 5-HIAA came back normal but Plasma Metanephrines were slightly elevated Dopamine 32 pg/ml and norepinephrine 748 pg/ml. We also did an abdominal ultrasound which showed 3 small < 2cm lesions on my liver, We followed up with liver Ultrasound and the Radiologist differential diagnosis was Hemangiomas. All other internal organs appeared normal, including gallbladder, pancreas and spleen, and adrenal glands are normal, kidneys are unremarkable visualized portions of bowel are normal and lung bases are clear. My Dr reccomended I see an endocrinologist to be safe we repeated the 5-HIAA and also added 24 hour urine metanephrines, as well as Plasma metanephrines. I also suggested the Chromagranin A, and she agreed. All test came back normal including plasma and urine metanephrines, but the Chromagranin A was elevated at 9 nmol/L. My Endocrinologist wants to do more blood tests and still seems suspicious of Neuro endocrine tumor. Based on the provided information what would you suspect and what would you be looking for and what woulod be your next reccomended move? My Dr says possibly MBIG if the further blood tests come back abnormal, also we are going to repeat the Chromagranin a. I have been very worried about all this and I know that my blood pressure and anxiety has been much worse over the last few months that I have been dealing with all this. Please let me know your thoughts.

    Thank you,

    BOMAR_ED

    ReplyDelete
  61. Dear BOMAR_ED,

    Carcinoid and pheo are unlikely with the normal test results. MIBG scan will not be useful. Make sure you are not on anti-acid treatment and have no atrophic gastritis. Low testosterone levels can be another cause of flushing.

    Dr. Pheo

    ReplyDelete
  62. Thanks for the response Dr Pheo. do you think that the Chromagranin A elevation which was a 9 nmol/L on the 1-5 labcorp reference range would have been elevated due to high blood pressure? I stopped taking my blood pressure medication for about 3 days before the blood work because I read that blood pressure medecines can affect metanephrines in blood plasma testing. If I don't take my blood pressure medecine my blood pressure can run as high as 165/100, and it was probably high for a few days before the test. I will ask my Dr. to repeat the Chromagranin tests and I will stay on the blood pressure meds this time.
    Also We have done a Gastrin test, Calcitonin test, Prolactin test, Sedimentation rate test, AFP tumor marker, CEA test all of which have been in the normal reference range. So far the only tests that were high were the metanephrines slightly elevated and the Chromagranin A test. I have read that Chromagranin A tests are 80% accurate, so it has me concerned. Also as you had suggested my Testosterone level is at the bottom of the normal range so maybe it is responsible for the flushing, but the Chromagranin A elevation has me worried. I guess at this stage we will retest Chromagranin A and if it still comes back high shoudl I be worried? What should we do if it does come back elevated with the 2nd test? I appreciate your valuable time and suggestions. Please let me know what you think about the chromagranin A elevation.- Thank you very much!

    ReplyDelete
  63. Dear BOMAR_ED,

    If the repeat CGA is still elevated, I would measure it in another lab (such as Quest) to make sure it is not an artifact. If the results from both labs are mildly elevated, I would measure it periodically to monitor.

    A mildly elevated CGA should not be considered evidence of a neuroendocrine tumor.

    Dr. Pheo

    ReplyDelete
  64. Dear Dr. Pheo;

    I think it is wonderful that you take time to answer questions from complete strangers. Thanks in advance.

    I'm a 50 year old male who has had increasing health issues over the past few years. I was diagnosed 3 years ago with hypopituitarism and last year with hypothyroidism. I am at the point now that it is difficult to work because of continuous nausea, heat intolerance, and fatigue. I also have abdominal discomfort and pain, but the pain really isn't that big of a deal since I have dealt with arthritis for years.

    On 2 occasions over the past couple of years, doctors thought I had gallbladder disease but ultrasound and hida scan were negative. In March, doctors started thinking it might be a carcinoid tumor.

    A 24-hour urine test was negative, but my CGA is 1814 ng/mL. I know that is high but I take 40 mg of pantoprazole twice a day. Is this level of CGA extremely high, even considering my medication? I am waiting to hear back form my doctor and I am a bit antsy at this point.

    Thanks,
    Tfrank

    ReplyDelete
    Replies
    1. Dear Tfrank,

      If the urine test was for 5-HIAA, then carcinoid is unlikely. CGA levels can be really high in people taking proton pump inhibitors at higher doses and for a longer time. The best way is to hold the drug and retest.

      Dr. Pheo

      Delete
  65. Hi Dr. Pheo,
    I was hoping you could give me your opinion on this. My Endo ran tests for my CGa through Labcorp and it came back as a 4. He didn't really mention anything more about it to me since it was in the "normal" range. They did find a pituitary micro-adenoma back in February of this year(3mm x 3mm) but said it was too small to remove at this point. I also have Hashimoto's disease. I feel awful all the time. He told to follow-up in a year. Do you think I should I seek a 2nd opinion? Thank you for your help.

    ReplyDelete
    Replies
    1. Dear nerdy by nature,

      The tiny pituitary tumor should be followed by biochemical tests and imaging.

      The CGA levels are indeed "normal". I wonder why your doctor ordered it at the first place. CGA is not the best test for pituitary tumors.

      Dr. Pheo

      Delete
  66. Dear Dr Pheo,

    I'm a 27 yr old male suffering from frequent flushing, non-watery diarrhea, upper abdominal pain, small nodules under skin some of which are very painful, and fatigue for 3 years now. The CGA came back as <1 in red from quest, urine 5hiaa was 3.8. Liver showed up as 18cm with hepatomegaly with 1.7 cm hemangioma on ultrasound. Echo showed trivial regurgitation in mitral and tricuspid valves. Unfortunately even with my disturbing symptoms doctors seem to tell me it's IBS. Should I keep pressing for answers? Retest CGA/5hiaa? I am really desperate and starting to get very depressed. Thank you for providing guidance to all who are in need.

    ReplyDelete
    Replies
    1. Dear Vitaliy,

      The CGA and 5HIAA indeed make carcinoid very unlikely. Unfortunately it is always easier to rule out a diagnosis than making a diagnosis.

      Dr. Pheo

      Delete
  67. Hi Dr Pheo

    I was diagnosed with a carcinoid tumor of the lung which was surgically removed last december (left lower lobectomy ) . The tumor was 5 centimeters in diameter and lymph nodes were not involved .

    I have been symptomatic and experienced intense breathlessness, shivering and palpitations following which I have undergone thorax CT which was clear , abdomen sonography which was also clear. Echo cardiogram revealed trivial mitral regurgitation which according to my doctor is not something to worry about . I was advised a chromogranin levels test . the result for which provides the following data :

    tumor marker : 90.5
    biological reference range : <98.5
    units : ng/mL

    I am quite unsure about what these test results mean because the idea of reference ranges is quite ambiguous . Is this within the safe plasma range or does it indicate a re occurence of the tumor .

    Thanks in advance .

    ReplyDelete
    Replies
    1. Dear The State Of It All,

      Most likely, the CGA levels are normal. The most important issue to consider is the pathological diagnosis of your lung carcinoid. Is it "typical" or "atypical"?

      Dr. Pheo

      Delete
  68. Hi doctor, I'm back on the forum...I have got a biopsy done for my duodenal tumor and it shows synaptophysin and chrmagranin staining negative and Mib-1 proliferation index is 0-1%. Is there any chance that it could be NET? What other tests would you suggest to rule out the chance?

    ReplyDelete
    Replies
    1. Dear Satan,

      It is unlikely an NET. It is important to examine the biopsy sample to see what it suggests. What did the report say?

      Dr. Pheo

      Delete
  69. I am a 58 yr old female and last Feb. my blood pressure went up to 168/98 numbness, shivering and it would come in waves. Dr. said high bp depression and a few other things. I discovered Carcinoid syndrome can cause this. They did a urine test and my Seritonin was high so they did a blood test. Seritonin was 400. I now eat things that are low in producing seritonin and have lowered it to 240 to 270. My CGA is 218 and I now have the following. I have dry flushing with my neck getting very red, my bp will get low, I get very cold. I also get welts on my neck and by my eyes usually around creases. I have had MRI with G, CT of chest,abdom. Octreoscan regular extrays. They have found a nodule on my lung, and one on my adrenal gland. Beign nodules in my stomach have been removed. I also have a nodule in the female area. A dr that deals with Carcinoid syndrome says since all my other blood work came back normal and my tests are normal it would be hard to determine where a tumor would be. Any suggestions?

    ReplyDelete
    Replies
    1. Dear Gretchen,

      How big are the 3 nodules?

      Dr. Pheo

      Delete
    2. lung 2 to 3 mm. adrenal 7 mm. Uterus 3 mm. Blood work in july VIP high 66.1 range 0-58.8 Neurotensin 28 range 50-100 Lab corp of course the other elevated blood work I told you about

      Delete
    3. Dear Gretchen,

      These nodules unlikely are clinically significant at present. I would suggest that you see a hypertension specialist.

      Dr. Pheo

      Delete
    4. Dear Dr.
      I have chronic gastritis and I am on lansoprazol for long time. Doctor send me for gastrin and CgA test in serume because no too much improvement. Results was:
      Gastrin - 82 pg/ml (norm.<115)
      Cromogranin A - 111 mcg/ml (norm.<100)
      Do you think it is normal levels do to medicine or can be something serious.
      Thanks and all the best.
      Elvis

      Delete
    5. Dear Goga,

      The levels are most likely due to the medication.

      Dr. pheo

      Delete
  70. Dr. Pheo,

    First, thank you for this informative blog. I am a 37 year old female at my wits end, after nearly a year of suffering with abdominal pain and joint pain, as well as total fatigue, shortness of breath, and secretory diarrhea while at the same time having difficulty urinating. I've been seeing a gastrointerologist for the last 6 months and have been through the wringer. I had a clear Octreoscan, and most blood work has been okay with the exception of very low iron 38 (60-170ug/dl and saturation 9 (20-55%). However, over the last week I have instantly gained 12 pounds and my legs, ankles, and feet are incredibly swollen. And I just got results back from a Chromogranin A test (LabCorp) which give my results as 7nmol/L (0-5)H. My gastro doctor has basically just passed me on to an oncologist/hematologist (whom I've already seen before), and I feel like they are just sending me in circles. Do you have any suggestions as to how I may get more answers and solutions? I can't take much more. No one will prescribe me anything to help with pain or anything as they say "we don't know what we are dealing with." Thanks in advance. One last bit of history: I had my gallbladder removed in 1993 and had a Nissen fundoplasty performed in 2010 and do not take anti-acid medications.

    ReplyDelete
    Replies
    1. Dear Nicole,

      The slightly elevated CGA levels by themselves do not strongly suggest neuroendocrine tumors. If you have anemia, it may be due to atrophic gastritis, which can elevate CGA levels.

      Dr. Pheo

      Delete
  71. Thanks for the reply. I know so many people have been (or are) in the same situation. it seems when you get sick, and it isn't obvious what the cause is, everything is symptomatic of something and becomes a concern. My family doctor,after spending New Year's Eve doing blood work and urinalysis work on me to determine the cause of my edema, has sent me to have an ultrasound next week. My urinalysis showed RBC of 25-50 with no WBC and only a trace of bacteria. I also had a BUN to creatinine ratio of 6:.73 and slightly elevated chloride in my blood work. It just seems that when it rains it pours. Thanks again and have a happy new year!

    ReplyDelete
  72. Hi Dr. Pheo, my son has had chronic urticaria for 18mos along with abdominal pain. His BMI is low for his age and he has suffered from fatigue most of his life (he is 6). Upper endoscopy was negative for findings. His treatment currently for hives/abdominal symptoms is prevacid 15mg bid, zantac 75mg bid, allegra bid, benadryl 25mg qhs. his hives continue and have never been eliminated. His esr is elevated (15) on 1-10 scale. His tsh has been minimally elevated and returned to normal and trial of low dose synthroid made hives worse. his cga is 342 (0-95 normal). serotonin is normal 202 (50-220). would the medicines he is on lead to the increased cga? what other testing would you suggest? we are seeing an allergist currently. should we stop prevacid and/or zantac and recheck? We are desperately trying to find the cause for his symptoms to no avail. thanks in advance.

    ReplyDelete
    Replies
    1. Dear momneedsanswers,

      The elevated CGA levels are likely caused by the prevacid. I am sorry but I don't have expertise on hives in children.

      Dr. Pheo

      Delete
  73. Im a 30 year old with chromogranin level 7 . Ct scan was neg . I have episoides of , flushing , rash , horrible stomach cramps , diarrhea . The last episode turned into ischemic colitis . My urine looks as though I have a horrible uti but culture was neg. I have left side pain , bloating for a day or too and then goes down . Any suggestions ? J

    ReplyDelete
    Replies
    1. Also I have low potassium .

      Delete
    2. Dear Jade,

      I am sorry but I cannot give specific suggestions except that neuroendocrine tumor is unlikely.

      Dr. Pheo

      Delete
  74. Dr Pheo
    I am 52 y.o. female with hx frequent diarrhea and cramps, noctural and facial flushing. Upper and Lower GI neg. Vip level drawn and found elevated, neg MRI and Octreoscan, EUS found malignant neuroendocrine tumor in pancreatic tail. Surgery done in Sept. 3 months post op VIP level remained elevated, Doc wasnt concerned so I called Nat Cancer Institute and they suggested Chromogranin as better marker. Then went to Duke Cancer Center (original surgery and Dx at Presbyterian Charlotte) At Duke in Dec repeated Octreoscan, MRI, labs. All neg with exception of Chromogranin of 242 (Mayo). Duke reviewed slides of EUS biopsy confirming malignant neuroendocrine, however resection slides reviewed at Presby, Hopkins, and Duke all showed no CA!?!?!?! So this week had repeat EUS, MRI and labs. EUS neg, awaiting MRI, but CHromogranin now 445. I do take Prilosec same dose as always. I am still symptomatic, could elevation be doubled due to meds or is it most likely sign of disease? Meet with Oncologist Monday, any ideas??? Thanks in advance, your blog is so helpful! Laura

    ReplyDelete
    Replies
    1. Dear Laura,

      Sorry for the late response. It is unlikely you have a VIPoma. If the EUS biopsy happened to hit a normal islet, the results may be interpreted as neuroendocrine tumor. You CGA levels could certainly be influenced by Prilosec. It is better to send the CGA to the same lab for consistency.

      Dr. Pheo

      Delete
  75. Hi Dr. Pheo,

    Are you a real doctor?
    Can you tell me if chromogranin a is a valid tumor marker for people who have had their gallbladder removed. it seems there would be less gastric acid you say may alter the values of chromogranin a if the gallbladder was removed. can you give insight on this question and potentially references backing it up or negating it?
    thank you : )

    ReplyDelete
    Replies
    1. Dear Bryan,

      I do see patients if that is what you mean. I am not aware of any effects of gallbladder surgery on CGA levels. I also do not know if removal of gallbladder changes the acid levels in the stomach.

      Dr. Pheo

      Delete
  76. Dear Dr. Pheo,

    I am a 49 yr old woman who was diagnosed (luckily) with a 6cm pheo on my left adrenal gland (gland removed in Nov. 2012 with open surgery). In February my Chromogranin A was 5 with LabCorp. Should I be concerned since it's at the highest end of LabCorp's normal, and you indicate Quest is a better lab for this test? Should I go to my regular MD and have him re-test the chromogranin A as he uses Quest (whereas my endocrinologist uses LabCorp)?

    My vitamin D is still low (was very low when I was very sick - 14) at 22.4L (range 30-100). And my Prolactin is elevated at 24.2 (4.8-23.3) which makes me nervous that something might be off with my pituitary gland. Starting a couple of years ago - before I knew I had a pheo, I did have milk discharge from my breasts (with stimulation, during sex) - which makes me worried about my pituitary.

    I guess I am just nervous because I thought I would feel a lot better than I do post-surgery. I feel like I have no get-up and go and breath is shallow often and sometimes vision is still blurry or weak (but much better than it was pre-surgery when I was also pre-diabetic). I have not lost any of the 40 or so pounds I put on, and I still crave sugar like mad. Some bad headaches have returned (with vomitting once - but I did have premenstrual migraines and non-premenstrual ones too my whole life). Some days I wake up and feel like I got hit by a truck. Just no energy. Is this normal once the pheo is removed? Also, I don't sleep well, anything will wake me in the night (raindrops! my cat! anything!) and I don't fall back asleep. Is it possible that it's just my remaining adrenal gland struggling to catch up and that causes me to feel I have no energy at times and the shallow breathing?

    Thanks!

    Laura S.

    ReplyDelete
    Replies
    1. Dear Laura,

      It is not uncommon that patients do not feel much a difference after pheo is removed. What is certain is that the pheo will eventually do serious damage if left in your body.

      To monitor pheo recurrence, the plasma metanephrines are much better test than chromogranin A.

      Dr. Pheo

      Delete
  77. Dr. Pheo

    Thanks for running this blog, as it provides good insight for those of us concerned with CrA results.

    Just a quick question: In the past I have have mildly elevated CrA results (<30% above reference) associated with possible flushing, a condition that has subsided. 5-HIAA tests have been normal. All tests were done by the Mayo Clinic lab.

    My latest tests came back markedly lower ("normal" at 74 ng/ml). At the same time, I noticed that Mayo Clinic now lists it's reference value as < 93 ng/ml, whereas last year when my results were much higher the same lab listed its reference value as <225.

    Do you have any knowledge about when and why Mayo changed the reference value, or if they are perhaps performing the evaluation in a different way? I would just like to feel comfortable with the results.

    Thanks

    StingWest

    ReplyDelete
  78. Dear StingWest,

    I am pretty sure that Mayo changed its way of testing CGA and used a new normal range. This phenomenon is common for many tests.

    Dr. Pheo

    ReplyDelete
  79. Dear Dr. Pheo,

    I am a 45 y.o. male suffering from flushing and GI problems (mild gastritis showed by a sequence of upper endoscopy tests performed about 2 years ago).

    Finally last one of my doctors connected the dots and got me tested for CrA. LabCorp: 9 nmol/L (ref range 0-5). After I stopped taking PPIs it was rechecked and it dropped to 4 nmol/L. 5-HIAA was normal: 9.3 mg/24hr (ref range 0-14.9). And cortisol was slightly elevated 21.9 (ref range 2.3-19.4).

    Because the esophageal pH test was normal Iwas advised to discontinue PPIs. At the end I was told no further testing and/or treatment was needed, and that I was essentially fine.

    Since I am still suffering from abdominal cramps and flushing I am starting to wonder whether I should ask to be reevaluated for the carcinoid syndrome.

    What is you opinion? Do you think my levels of CrA make me a suspect?

    Thanks & regards,
    Peter

    ReplyDelete
    Replies
    1. Dear Peter,

      I agree with your doctors that the CGA and HIAA results do not support carcinoid syndrome. It will be much more challenging to figure out what else causes your cramps and flushing.

      Dr. Pheo

      Delete
  80. Hi Dr. Pheo,

    I'll try to make this as short as possible! In January my Gastroenterologist checked my CGA levels and they came back from Labcorp at 18 nmol, which I presume is roughly somewhere around 888 ng/mL. Yikes. We retested today, so we'll hopefully get those back soon. My family history includes Type 2 Diabetes (grandfather), Colon Cancer (grandmother passed away less than a year after diagnosis, at age 67 as it had already spread to her live and was inoperable), along with ruptured Abdominal Aortic Anuerysm (most likely due to Ehlers-Danlos), etc.

    I am a 27 yr old female, diagnosed with Mild Classical type Ehlers-Danlos Syndrome (a connective tissue disorder) with hypermobility and share an unspecified neurological and vascular disorder with my siblings; many of my secondary diagnoses stem from this, and include:

    Early Degenerative Disc Disease/Spinal Osteoarthritis/Lumbosacral Spondylosis
    Mitral Valve Prolapse w/ mild regurgitation (dx'd by echo)
    Heart arrhythmia (unspecified cause)
    850 symptomatic ventricular & supra-ventricular PVCs (24hr Holter Monitor)
    Dysautonomia/Peripheral Neuropathy/Brachial Neuritis/Widespread Tendoniti
    Chronically Acute Musculoskeletal/Joint Pain
    Fibromyalgia/Orthostatic, Heat and Exercise Intolerance
    Migraine with Aura, Non-Epileptic (unspecified) Focal Seizures/Attention Deficit Disorder
    Extrinsic Asthma/Chronic Rhinitis
    Raynaud's Phenomenon/Cyanosis
    Inflammatory Costrochondritis/Pneumonia
    Gallbladder EF of 15% on HidaScan (with no apparent cause)
    Kidney stones/spot on left kidney via ultrasound
    Some sort of umbilical-area fluid filled cavity since adolescence (disappears and returns)
    Mysterious sharp pains also in tail end of pancreas, kidneys, intestines
    Two precancerous tubular adenomatous colon polyps removed since adolescence

    Brain MRI and CT checking for Epilepsy was 'within normal limits'
    X-rays and ultrasounds mostly clear besides kidney blip
    Cystoscopy was normal
    Upper and lower endoscopy clear (besides colon polyps)
    Duodenal biopsy normal
    Abnormal paps, but clear cervical biopsies

    Besides the elevated CGA, my blood work has been relatively normal, though it does include Borderline ANA (w/ no autoimmune markers despite Lupus/Rheumatoid symptoms). My urinalyses tend to frequently come back with present Bilirubinuria and Proteinuria, which we now presume to be 'my normal,' (since no underlying cause has been found) and occasionally we see trace WBC.

    I've had all the symptoms for MCAS for the past few months and was rather shocked when my tryptase levels came back normal. These MCAS/carcinoid symptoms have notably included intense flushing on upper torso and face since childhood, and for the past two years have been pronounced at night, in addition to normal emotional-response flushing, etc.

    ReplyDelete
  81. Other odd symptoms include weight loss (BMI 17 @ 5'9" and 115lbs) stroke-like drooping eye, confusion, memory loss, double vision, vertigo, tinnitus, nausea, increased neuropathy, numbness in hands/feet, hair standing on end/chill bumps for no reason, horrible abdominal pains/gastroparesis, bloating... The list goes on and is quite extensive. Many times I'm so exhausted that I can't lift my arms and legs off the bed and have only recently found relief through opiates. I take many meds, including daily Vyvanse, Voltaren, Nucynta, Propranolol and about twenty others on an as-needed basis. I haven't been taking any PPIs to ensure a thoroughly correct CGA reading.

    So you see...I have extensive health issues with ambiguous causes, and am therefore a very frustrating patient :)

    I was wondering if you happen to know whether the elevated CGA could be attributed to any of these other things, or maybe influenced by some medications besides PPIs? I only take the beta-blocker propranolol (Inderal) and cannot take CCBs, though I'm unsure if that's relevant- I thought I might have read somewhere that calcium channel blockers could influence CGA? (Maybe not.)

    You truly are a dear for directly addressing/replying to the public here, and if you've made it to the end of this post,then I do commend you! Thanks so much for your time! :)

    ReplyDelete
  82. I hate to write ANYthing else here, but I should mention that my geneticist has mentioned a possible mitochondrial link/cause of many of these symptoms.

    It's also quite probable that I have cranial cervical instability as well.

    I'm really hoping NOT to add cancer to this list...

    ReplyDelete
    Replies
    1. Dear J,

      What are your gastrin levels? Another cause of elevated CGA is atrophic gastritis (where gastrin levels are also elevated).

      Dr. Pheo

      Delete
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  85. Thank you so much, I haven't had my gastric levels checked, but my CGA just came back at a 3 from Labcorp, so I guess that means some medication was interfering! Thank you!

    ReplyDelete
    Replies
    1. Dear J,

      Glad to hear your CGA returns to normal. Dr. James Yao is a neuroendocrine tumor specialist at MD Anderson.

      Dr. Pheo

      Delete
  86. Dr. Pheo,
    I am a 43 y.o. female and I have suffered with horrible and profuse sweating for nearly 5 years. I needed to have a partial hysterectomy in 2010 (for very abnormal and painful periods), so I still have ovaries. Some GP's assumed I was starting menopause because of the sweating, but just recently was referred to the only endocrinologist in Cedar Rapids, IA. I have done 3 24hr urine catches and my results were:
    1st catch--Creatinine=1765mg/24hr (600-1500)
    norepinephrine=224mcg/24hr (15-80)
    epinephrine=5.7mcg/24hr (<21)
    dopamine=342mcg/24hr (65-400)
    cortisol=13 (3.5-45)
    metanephrines=99 (30-180 for normo)
    normetanephrine=1412(119-451normo)
    TOTAL METANEPHRINE=1511 (156-561n)

    2nd catch - my creatinine rose to 2391 and endo Dr. canceled all other labs in that order as she said the creatinine was so high it would throw off the other results. (Is this true??)

    My 3rd catch was very similar to the 1st as reported on the phone today by the nurse. The Dr. now wants me to come in this Friday for a Cga blood test and I will need to fast for 12 hours - and also that an IV will be started and the procedure will take about a half hour. I understand the fasting, of course; but what is the reason and role for the IV? What is being given through that?? I didn't think quick enough to ask before getting off the phone.) Is there another lab test that requires an IV drip that she didn't mention??

    I also take effexor and lamictal for anxiety and depression. Wondering (suspecting!) if these depression meds, SSRI's, etc., do actually play a role in developing pheo's or any carcinoids regarding the endocrine system?? I have been researching all this afternoon on line and found your site - very helpful....thank you! - and discovered that meds like omeprazole should be stopped prior to a Cga test. I specifically asked before each urine catch and just now for this upcoming Cga test if I should stop any meds. The answer has always been no. I really don't want to keep paying for all of these tests if the results are being skewed and then would have to repeat them again somewhere else! Should I cancel this lab appointment and go off the omeprazole, and if so, for how long before I do the test for accuracy?? I've been taking 20mg approximately 1-3 times a week. Was prescribed 20 mgs 2x's/day but found I can get by and feel just as good on less.
    I've known someone who had a very large pheo and they insisted I be referred to the Mayo clinic which is only 3 hours away as they are the best in the nation for endocrine/adrenal issues. What is your opinion of my current doctors' choices and what is your opinion on getting a second opinion and/or treatment at the Mayo Clinic? We live close to the University of Iowa Hospitals but haven't heard much about their department. Any information or opinions are gratefully appreciated! Thank-you again.
    Jeanne

    ReplyDelete
    Replies
    1. Dear Jeanne,

      You do need to stop omeprazole for 2 weeks before the CGA test. If pheo is suspected, then plasma metanephrines are the best test. If carcinoid is suspected, then CGA, serotonin, and urine 5-HIAA are needed. Dr. Tom O'Dorisio at U of I is a wonderful pheo doctor.

      Dr. Pheo

      Delete
  87. Thanks for the useful info Dr. Pheo! I had a 5 nmol/L result (Labcorp)some time ago; want to f/u w/ Quest...do you know of any online/discount labs that offer the Quest CgA. Family hx of abdomoninal carcinomas - great grandmother (48) abd CA, grandmother (53) retroperitoneal CA major mets, mother primary peritoneal. I had extraovarian benign removed via lap. Feel certain abdominal involvement no show on CT,MRI, supposed hemangiomas (liver). Ring any bells?

    ReplyDelete
    Replies
    1. Dear Zlc,

      I am sorry but I don't know any online labs offering quest tests. I don't know much about abdominal malignancies.

      Dr. Pheo

      Delete
  88. Kelly

    Dr. Pheo,
    My husband had a 1.3 or 1.4cm carcinoid in his appendix last May. The surgeon removed the cecum and local lymph nodes and healthy tissue. Pathology reports came back stating margins were not clean and cells in one of the two nodes removed. His PCP wanted to have the hemicolectomy done, but oncologist and surgeon said to watch closely instead. He still has chronic diarrhea, abdominal pain at sight of resection, and possible flushing. His Dr. said recent CT scan was negative, but they saw a 3mm low attenuation lesion that is too small to classify and his CGA level was high at 31, on their test normal is 1.9-15. I am concerned, could you please tell me your thoughts? Thank you for your time

    ReplyDelete
  89. I am sorry I also forgot to say that he has also gained 32 pounds in the year since surgery, 16 of those in 4 months

    ReplyDelete
    Replies
    1. Dear Kelly,

      Hemicolectomy is probably a good idea. The CGA levels were hard to interpret. I also think an octreotide scan is a good idea.

      Dr. Pheo

      Delete
    2. Thank you for your reply. He has had 4 CGA tests so far with the last 3 being elevated. The results are not sky high, but are elevated and actually fluctuate from 31 ng/mL to 70 ng/mL back down to 35 ng/mL. with the reference range for Quest Diagnostics being 1.9-15.0 ng/mL. He is scheduled for another octreotide scan. My question is He has dry flushing, What could cause that and if it is related to carcinoid Should it show on the scan this time? or is it possible that even if you may have flushing caused by Carcinoid that it will not be the right hormone to show on the scan? I do appreciate your thoughts and thank you once again for your insight.

      Delete
    3. I forgot to mention he will also repeat blood work again in 3 months and if scan is clear doctor possibly wants colonoscopy done. I did not men to post as anonymous.Thank you again

      Delete
    4. Dear Kelly,

      Has he measured 24-hour urine 5-HIAA yet? This test will help determine if the flushing is due to carcinoid syndrome.

      Dr. Pheo

      Delete
    5. Dr. Pheo,
      He had it done when this all started, but that was June of 2012 and was normal at the time. I only noticed his flushing about six months ago. I asked if he should have the 24 hour urine repeated and his doctor said that he does not think it is necessary since he has already been diagnosed with Carcinoid in the past and that it is more for establishing the initial diagnosis. I do appreciate your input and Thank you for your time.

      Delete
    6. Dr. Pheo,
      I forgot to ask, if the flushing is attributed to carcinoid, does it have to mean that he has mets in the liver or could it just be indicative of active tumors somewhere in the body. i know the doctors have said the tricky part with Carcinoid is that it can pop up anywhere. Thank you

      Delete
    7. Dear Kelly,

      For most patients, if the flushing is caused by carcinoid, they already have liver mets. For some patients with carcinoids in other parts of the body, the tumors are usually pretty big when they cause flushing.

      Dr. Pheo

      Delete
    8. He flushes all the time. His OtreoScan was negative. We are going to repeat CGA in 3 month intervals. I am concerned with the flushing since it has become regular. Do the hormones that cause flushing if it is Carcinoid related also the hormones that the Octreotide bind to or not necessarily? I just ask as he is almost 2 years from the surgery and he still has diarrhea (he doesn't even have to eat and it still comes), abdominal pain at the site of removal, and now since the summer is almost always flushed. I am under the impression that if there are tumors in the intestines it can be kind of tricky to find and just get concerned since the original that was 1.3cm did not show on CT scans prior to surgery. I mentioned in past post that post surgical path reports showed margins not as great as they would have liked on cecum and cells in 1 of the 2 local lymph nodes removed. Thank you for all your replies.

      Delete
    9. Dear Kelly,

      With the negative octreotide scan, carcinoid is more unlikely. Flushing is a tough symptom to get a clear diagnosis. He should see specialists.

      Dr. Pheo

      Delete
  90. Dr. Pheo,
    Is Octreoscan the most useful imaging test for Neuroendocrine Tumor? JF

    ReplyDelete
    Replies
    1. Dear JF,

      There is no clear answer to this question. Octreotide scan is best in finding metastatic neuroendocrine tumors and in confirming that the tumors have somatostatin receptor.

      Dr. Pheo

      Delete
  91. Dear Dr. Pheo
    My husband has just had a blood test result of 900+ of Chromogranin A.
    He has taken Tagamet, then Prilosec then Protonix 20mg daily for the last 25 or so years.
    Could that be the reason? What should we do next?

    ReplyDelete
    Replies
    1. Dear Anonymous,

      It depends on why the CGA test is ordered at the first place and whether it will be safe for him to stop protonix. CGA could be as high as 1000 in people using proton pump inhibitor but not that high. He can try to stop protonix for 2 weeks if safe.

      Dr. Pheo

      Delete
  92. Dr. Pheo, Hi I'm a 36 yr. old male and I've been dealing with a lot of abdominal issues. My list of symptoms are: lump in abdomen just above belly button almost 2yrs.
    now, back pain in middle of back, and on right side, stomach pains and discomfort, pain in liver area almost a year and a half now, itchy in liver area and where the lump in the abdomen is that comes and goes, light colored stools, foul smelling stools, diahreah, floating stool, yellowish green colored stools, hair loss on legs calf area, the back pain feels like grinding when I lean and bend over, and when I lean back in a chair it feels like something's there that shouldn't be there, I have rib pain almost 2 yrs. now, I can't sleep on my sides, insomnia really bad, I live off nyquill it's the only way I can sleep, sore legs, sore knees, sore feet, loss of musle mass in back, shoulders, and forearms. Lines in fingernails, foul smelling gas all the time. I mean the list goes on and on. I've had 15 ct scans of my abdomen and pelvis done the past 2 yrs. they've shown Slightly prominent mesnteric lymphnodes, a leision on my liver poped up in September of last year this is when I started feeling the pain in my liver area. At the time the leision was 3mm saying to small to characterize statiscally most likely a cyst. The leision shows up on every ct scan and the latest one says its 8mm now. 1 week ago. I've had numerous other tests upper and lower gi , gall bladder removed 1 yr. ago, 2 eus's, latest one done 9 months ago, ultrasounds, you name it. I'm worried about pancreatic cancer neuroendocrine tumor. I'm worried that the lesion on my liver is cancer that's spread to my liver causing the constant pain there. I'm worried the ct scans are missing something, and is it possible they could miss a tumor that's already spread to my liver? What about the 2 eus's shouldn't they catch what the ct scans are missing? I'm almost convinced its neuroendocrine tumor in my pancreas based on my symptoms, and the slowi growing leision on my liver. I had 3 ca 19-9 blood tests done all normal, I had a cga done and the result was a 5 from Labcorp normal is 0-5. I'm worried about it being on the high end especially with all the symptoms. I'm tired of living like this and the drs don't seem to be taking me serious I'm so depressed and think about suicide everyday. Any suggestions you have for me would be greatly appreciated I know it's a long post and I'm sorry I just wanted to get everything I could think of out there. I also have a dry mouth all the time also. The highest I've ever seen my sugar was 101. Any input would be greatly appreciated thank you.

    ReplyDelete
    Replies
    1. Have you researched carcinoid tumors?

      Delete
  93. Also forgot to mention I have indigestion, lump feeling in throat, and about 8 months back my urine was really dark for a few months and all i was drinking was water at the time and I felt itchy everywhere. I mean if the lump in my abdomen was a tumor in my pancreas wouldn't it have to be a pretty large tumor to cause a lump? And how could the ct scans miss it also the 2 eus's? I'm at my witts end here and don't know what else to do. Should I see a Endocrinologist?

    ReplyDelete
    Replies
    1. Dear Anonymous,

      If the multiple EUS and CT scans all did not see a pancreatic mass, the likelihood of a pancreatic neuroendocrine tumor is very low. Please see my post on how to deal with frustrating symptoms.

      Dr. Pheo

      Delete
  94. Thanks for your response I really appreciate it. But doc when I look at the symptoms for neuroendocrine tumors I have every one. Lump in my abdomen, back pain, puritis, dry mouth, light colored stools, fatigue, insomnia, indigestion, ect. I just can't find anything that even comes close. It's frustrating that that 2 eus's and 15 ct scans can't pick this up. Is there any other tests that I should ask for? Would a ERCP show any tumors in my Pancreas? I'm so frustrated right now and depressed.

    ReplyDelete
    Replies
    1. Dr. Can you please answer, would a ERCP be a test to ask for? I can't take much more of living like this I know something bad is wrong with me. My stools just aren't the same anymore. I wonder now that I think about it if this could be Glucagonoma Tumor because a few months back I would get this itchy blistery rash on the tops of my feet and bottom of my legs that would come and go. I read that this is a symptom of Glucagonoma tumors. But I wonder why the ct scans aren't picking it up. I'm so angry and frustrated because I feel like it's spreading all over my body and the ct scans aren't detecting it. I know the leision on my liver is cancer it's gotta be, I have constant pain in that area. What else can I do doc? I feel helpless right now.

      Delete
  95. Dear Joe,

    I am sorry but I cannot answer your question.

    Dr. Pheo

    ReplyDelete
  96. Dear Dr. Pheo,

    I have done blood tests and chromogranin a levels came in at 136 ng/ml. The reference value for this lab is 100ng/ml. I have done subsequent 24 hour 5-HIAA and metanefrine tests and the values came in normal. My creatinine is moderately high at 1,2 mg/dl but I have done testing 9 months ago to assess renal function and all was well. I don´t take PPI´s, just bisoprolol for SVT´s but other than no obvious symptoms of disease. Do I require follow-up testing? How would it look like in your opinion?

    ReplyDelete
    Replies
    1. I am a 31year old male just in case this information is relevant.

      Delete
    2. Dear Anonymous,

      What was the reason to test chromogranin A at the first place?

      Dr. Pheo

      Delete
    3. Hello Dr. Pheo

      I was referred to an endocrinologist by my cardiologist after still complaining of momentary dizziness and sweaty palms after the SVT diagnosis and being put on bisoprolol. The endocrinologist then ordered blood tests, including chromogranin A. After they came back positive, he then suggested the 24 hour urine 5 HIAA, which I did, and referred me to the neprologist due to the high creatinine. However, as I said, I don't seem to have any renal impairment as I been tested before due to the high creatinine values (routine check up).
      I called my GP and he had never heard of chromogranin A and I'm a bit worried we might be stumbling upon a tumor or a cancer.
      I will be making appointments for the cardiologist, nephrologist and and endocrinologist again (might take a while), so I would to hear your opinion as well.
      Thank you.

      Delete
    4. Dear Anonymous,

      It is still too early to say whether the mildly elevated CGA means you have a tumor. Now it depends on how concerned you are with the abnormal CGA. You can either repeat the test in 3 months if you are not concerned or you can test gastrin to see if you may have atrophic gastritis. Whether to go for other tests or imaging should be judged by your local doctors.

      Dr. Pheo

      Delete
    5. Dear Dr. Pheo,

      I will discuss this with my local doctors, thank you very much for your opinion. Two more questions if I may: Could these chromogranin A levels be normal in my particular case? Since my GP doesn`t seem to know how to handle these types of cases, which specialty doctor could play a lead role in a potential follow up (the one who could put 2 and 2 together), endo?

      Delete
    6. Dear Anonymous,

      The upper normal limit of a lab results is usually defined as <2.5% of the normal population have a result higher than it. So it is possible that your result does not mean you have a tumor. An endocrinologist probably is better for follow up.

      Dr. Pheo

      Delete
  97. Dear Dr. Pheo,

    I am currently going through testing to determine whether I have a NET or Pheo or something else. I have symptoms that fit NETS, Carcinoid, & Pheo. I just had a bunch of labs drawn and one was Chromogranin A. It was 31 ng/ml which the lab calls "normal" After much research, my interpretation is that is not a normal reading. Here are all my results. I am waiting to talk with my endo again but he is very busy. Can you give me a quick look and say what you would suspect and do next?
    Insulin Antibodies
    Result 0.00 nmol/L
    Normal: 0.00-0.02
    Vasoact Intest PolyPep Pl
    Result 43 pg/mL
    Normal: < 75 pg/mL
    Serotonin, Serum
    Result 81 ng/mL
    Normal: <= 230 ng/mL
    Tiss Transglutaminase IgA
    Result < <1.2 Units/mL
    Normal: <4.0 (Negative)
    Est Average Glucose mmol/L
    Result 5.84 mmol/L
    Est Average Glucose mg/dL
    Result 105 mg/dL
    Estimated CRCL (CG)
    Result > 60 mL/min
    Normal: >= 59 mL/minEstimated GFR (MDRD)
    Result > 60 mL/min/1.73m2
    Normal: >= 59 mL/min/1.73m2
    Chromogranin A Ser QN
    Result 31 ng/mL
    Normal: < 93 ng/mL
    Absolute Basophil
    Result 00.0 k/cumm
    Normal: 00.0 k/cumm - 00.2 k/cumm
    Absolute Eosinophil
    Result 00.1 k/cumm
    Normal: 00.0 k/cumm - 00.3 k/cumm
    Absolute Monocyte
    Result 00.6 k/cumm
    Normal: 00.1 k/cumm - 1.3 k/cumm
    Absolute Lymphocyte
    Result 1.9 k/cumm
    Normal: 1.0 k/cumm - 3.2 k/cumm
    Absolute Neutrophil
    Result 4.8 k/cumm
    Normal: 1.7 k/cumm - 7.5 k/cumm
    Basophils %
    Result 00 %
    Eosinophils %
    Result 1 %
    Monocytes %
    Result 8 %
    Lymphocytes %
    Result 25 %
    Neutrophils %
    Result 65 %
    T3 Total Ser QN
    Result 150 ng/dL
    Normal: 82 ng/dL - 179 ng/dL
    TSH 3rd Gen SerPl QN
    Result 00.121 mcU/mL (Low)
    Normal: 00.400 mcU/mL - 4.200 mcU/mL
    T4 Free Direct SerPl QN
    Result 00.9 ng/dL
    Normal: 00.6 ng/dL - 1.5 ng/dL
    T4 SerPl QN
    Result 8.2 mCg/dL
    Normal: 5.0 mCg/dL - 12.0 mCg/dL
    Insulin SerPl QN
    Result 303.63 mcU/mL (High)
    Normal: 4.00 mcU/mL - 30.00 mcU/mL
    Hemoglobin A1C HPLC Bld QN
    Result 5.3 %
    Normal: 4.0 % - 5.9 %
    Total Protein SerPl QN
    Result 7.2 GM/dL
    Normal: 6.4 GM/dL - 8.0 GM/dL
    LDL Meas SerPl QN
    Result 90 mg/dL
    Normal: 00 mg/dL - 100 mg/dL
    Bilirubin Total SerPl QN
    Result 00.5 mg/dL
    Normal: 00.0 mg/dL - 1.0 mg/dL
    Calcium Total SerPl QN
    Result 9.6 mg/dL
    Normal: 8.5 mg/dL - 10.5 mg/dL
    BUN SerPl QN
    Result 11 mg/dL
    Normal: 5 mg/dL - 20 mg/dL
    Glucose SerPl Q
    Result 90 mg/dL
    Normal: 70 mg/dL - 99 mg/dL
    Carbon Dioxide SerPl QN
    Result 31 mmol/L (High)
    Normal: 22 mmol/L - 29 mmol/L
    Chloride SerPl QN
    Result 102 mmol/L
    Normal: 98 mmol/L - 108 mmol/L
    Potassium SerPl QN
    Result 4.0 mmol/L
    Normal: 3.5 mmol/L - 5.5 mmol/L
    Sodium SerPl QN
    Result 138 mmol/L
    Normal: 135 mmol/L - 145 mmol/L
    Creatinine SerPl QN
    Result 00.89 mg/dL
    Normal: 00.80 mg/dL - 1.40 mg/dL
    AST SerPl QN
    Result 29 Units/L
    Normal: 13 Units/L - 39 Units/L
    Alkaline Phos SerPl QN
    Result 45 Units/L
    Normal: 25 Units/L - 125 Units/L
    Albumin SerPl QN
    Result 3.9 GM/dL
    Normal: 3.5 GM/dL - 5.0 GM/dL
    ALT SerPl QN
    Result 29 Units/L
    Normal: 7 Units/L - 52 Units/L
    WBC
    Result 7.5 k/cumm
    Normal: 3.6 k/cumm - 10.6 k/cumm
    Sed Rate
    Result 13 mm/hr
    Normal: 00 mm/hr - 15 mm/hr
    RDW
    Result 13.1 %
    Normal: 11.5 % - 14.5 %
    RBC
    Result 5.19 million/cumm
    Normal: 4.18 million/cumm - 5.51 million/cumm
    Platelet
    Result 209 k/cumm
    Normal: 150 k/cumm - 450 k/cumm
    MPV
    Result 7.3 fL
    Normal: 7.0 fL - 12.0 fL
    MCV
    Result 94 fL
    Normal: 81 fL - 99 fL
    MCHC
    Result 33.9 GM/dL
    Normal: 32.0 GM/dL - 36.0 GM/dL
    MCH
    Result 31.8 pg
    Normal: 27.0 pg - 34.0 pg
    Hgb
    Result 16.5 GM/dL
    Normal: 13.4 GM/dL - 17.0 GM/dL
    Hct
    Result 48.7 %
    Normal: 40.0 % - 54.0 %
    Anion Gap
    Result 5 mmol/L
    Normetanephrine, Free Pl
    Result 0.73 nmol/L
    Normal: < 00.90 nmol/L
    Metanephrine, Free Pl
    Result 0.25 nmol/L
    Normal: < 00.50 nmol/L

    ReplyDelete
    Replies
    1. Thank you in advance for your review. I'm a bit worried. When I have episodes they come with a feeling of impending doom. I don't know what is going on other than at 33 I shouldn't feel like I do.

      Delete
    2. Also, I realize it's hard to interpret off of labs alone sometimes so a little background. Dx'd with hypertension age 12, beta blockade since (as a teen I must admit I seldom took meds but since about 24 or 25 always on beta) Hx of kidney stones, Right nephrectomy due to botched stone removal, after that I started having symptoms of palpitations to the point where I check radial and carotid and sometimes have no pulse. Have had several 24 and 72 hour urines one came back with elevated cortisol, and slightly elevated nor and metanephrines. Have had cardio consult, stress and ECG normal, 30 day holter monitor showed PVC's & PAC's sporadically but I always feel them. Sent to endo for consult, thyroid hyperactive I have multinodular toxic goiter, radioactive test did not show cancer some calcification noted on report. New endo, symptoms of nausea severe sweating, dizziness, blurred vision, shaky feeling inside, flushing, headaches. Frequent left flank pain dull aching throbbing lasting a long time.

      When sweating and feeling the episode come on starts, I eat and at times I will feel better but I usually feel like i've ran a marathon for a couple days. my blood sugars at times are >200 postprandial but my sugars have been pretty normal all my life until I started noticing these symptoms.

      I am certainly hoping for diabetes as I can reverse that. I am over weight morbidly 362 lbs 6'1" but it's all in my abdomen. I have pretty good muscle mass everywhere except abdomen. I have an extremely hard time losing that weight.

      That's pretty much a high level view of my status. What do you think?

      Delete
    3. Dear Nic,

      Based on the lab results, you unlikely have carcinoid or pheo. I recommend a sleep study to check for sleep apnea.

      Dr. Pheo

      Delete
  98. Dear Dr.Pheo
    my wife had taken single dose of ranitidine 12 hours prior to chomogranin a test.is it likely to alter the report? Also she is due for 5 HIAA test so does she have to stop taking steroids and cettrizine before that?
    KG

    ReplyDelete
  99. Dear Dr Pheo
    my wife had flushing episode and choking sensation which was ascribed to some drug allergy but she was advised screening tests for carcinoid.she had taken single dose of ranitidine,steroids and cetrizine 12 hours prior to the test.is it going to alter the picture.also does she have to stop taking steroids and cetrizine prior to 5 HIAA test?

    ReplyDelete
    Replies
    1. Dear Anonymous,

      The single dose of those drugs unlikely influences the results of CGA and 5HIAA.

      Dr. Pheo

      Delete
  100. This comment has been removed by the author.

    ReplyDelete
  101. Hello, so glad to have found this sight.
    Not sure if related but with both pregnancies 10 and 11 years ago had massive bleeding from nose requiring transfusions for ten days each time. Chalked up to medical mystery and never seen before.
    September 2011: started having 5-10 hypoglycemia episodes a day. I am in Canada so here you should be 4-7 but I was measuring in at 2-2.2 each time and it was relieved by something sweet. 0.7 was first 911 call. Still exists but as long as I eat NO breads, pastas,starchy veggies, processed anything , fruit or sugar or caffeine I can usually keep under control
    Mach 2012: hypotension started in episodes that would last a day or two. Go to ER for saline bonus packs when hits 85/45


    Collapsed at work because of low blood pressure in June
    2012
    In Toronto endo's ran a bunch of test including CgA. They tested for Addison's which was - however CgA came back elevated at 110(not sure of cut off in Canada ) in 04/13
    I was told possibly dealing with NET but that they can take a while to present. Florinef and midrodine not helped to raise Bp. Had two cat scans and ultrasound which inked up 2cm mass on liver but I am told it appears benign to radiologist. My body has become allergic to contrast dyes so things are difficult in the testing department.
    More recently (last 4 months) have been having a lot of discomfort on left upper side. Almost like mini attacks that leave me unable to eat for days at a time, only enough to keep sugar from falling. I get very nausea s , some pain and lots of belching. Mentioned to doctors and they refereed me to gastro as they said feet it could be located in stomach area.
    Saw gastro last month and he asked if I was familiar with carcinoid. I said a bit (had 5haai urine test last summer and fine) He said it is a possibility bc of family history,( my father is thyroid medullary cancer patient.)symptoms, etc. I do get flushing once in a while however it is just my ears and palms of my hands. That's been going on all three years since this started. Anyhow he will be doing endoscopy next month and taking biopsies but bc of unstable blood pressure he says he can't sedate me whatsoever so I am very nervous yet know it has to be done.
    In meantime I find the last few months I have been experiencing more pain and discomfort in that area . I've also been having episodes of incredible fatigue which is very unlike me. The endo did say in February that my liver felt swollen at tip but as far as I know liver function tests came back normal.
    Anyhow, last week the endos called me(not due to see them until May again to tell me they would like me up there sooner and want to do an ostreoscan as my last reading of CgA in November was 125 and last months has gone up to 225. They said they are concerned and that we are now dealing with a positive rater than a probable yet they told me to try not to worry. Very difficult when you have 2 young children though:(
    What significance does the CGA have when it goes up by 100 in three months correlating with worsening of tummy symptoms and fatigue? If the urine test comes back that I did last month positive for carcinoid does that mean the tumour or tumours are in fact in the stomach? And what are he chances of them being benign and if malignant, the chances of beating it? I am a 41 year old woman by the way. I probably should have included that at the beginning.
    I'm just waiting for appointment for o-scan now, hoping we will figure this all out. My one endo said not a real hurt and the other said there is concern. I straight out asked if I had cancer and he said,,,at this point this is the avenue we are investigating, I would appreciate anything you could tell me about any of this:)
    And he did say surgery would be first line of defence however if they and sedate me for a simple endoscopy I don't know how they will give me a general lol. I asked him what if the o-scan, endoscopy or biopsies show nothing and he said if carcinoid urine test + then will have to find.
    And is 225 considered really high or just elevated?

    ReplyDelete
  102. This comment has been removed by the author.

    ReplyDelete
  103. So sorry for the removal and adds of comments , just wanted to make sure I was including everything:)
    To add, I have lost 60 pounds since this began three years ago although I think that could be from the no carb and no sugar diet I have been following all this time. I should think I would be gaining weight with all the dairy and extra fat I eat for sugar, not to mention at least one full container of natural peanut butter a week lol
    I've not taken any PPI's as I've read that they can falsely elevate CgA, and my endo said that often when the CgA does this sort of jump things are reedy to be seen on imaging.
    I had negative MRI of head last week w/o contrast as even pre-medicated I still react.
    I've also had numerous episodes of tachycardia, one having me for overnight in hospital although no cause found as this was early in this whole mystery.
    Other symptoms that come and go are:
    Vision disturbances(eye exam, field of vision all tested fine) although sight 30/40 and 25/30 now.
    Bouts of confusion although I tell myself the forgetfulness and forgetting simple names and words are part of aging
    Very cold and often pain in feet
    Perceived weakness in extremities although I can still walk and lift fine
    Increase to allergies and minor reactions to things
    Anyhow, I am extremely grateful for this blog and if you have any questions please feel free to ask.
    I'm wondering if any of this sounds like definite NET or carcinoid or if could be something else lol
    Thank you Dr.Pheo

    ReplyDelete
    Replies
    1. Dear Jodsterbaker,

      Do you take anti-acid medications? Do you still have hypoglycemia after taking corticosteroid?

      Dr. Pheo

      Delete
  104. dr.Pheo,
    thank you for the blog. im a 57 year old male. constant flushing in my neck and battling mostly diarrhea for 9 months. had a ct with contrast that was negative. histamine blood test that was a 15 (1-8) was normal i believe. chromagranin-a was 274 and i think thats high.i do take Dexilant 60 mg. should i do anymore testing or take the lead from my doctors that it is ibs.sorry but symptoms just dont go away

    ReplyDelete
  105. Dear Kip,

    Dexilant can certainly cause the high chromogranin A. If the CT covers abdomen and pelvis and is negative, you unlikely have carcinoid,

    Dr. Pheo

    ReplyDelete
  106. Thank you Dr.Pheo.
    I do not take any antacids of stomach medication with the exception of gravol once in a while when nausea bad.
    The hypoglycemia is always there. I prevent it by eating every few hours (cheese and peanut butter) etc and by not eating anything that will cause a reactive episode such as high carbs, sugars, caffeine, etc. once in a while it will drop for an unknown reason but episodes much less since I've kept strict diet, no exercise etc.
    The Florinef is supposed to help my hypotension yet I think it's just become a become a bandaid bc I'm thinking its just a crutch although not preventing much :)
    Metformin was suggested to perhaps stabilize insulin but a couple of my doctors have me tinned that he reason these meds may not be working properly is because of stomach involvement. Your input greatly appreciated and respected :)

    ReplyDelete
  107. My apologies:)
    "Me tinned" should have read "mentioned" :)
    Thank you

    ReplyDelete
  108. Dear Jodsterbaker,

    It sounds like that you still have hypoglycemia after taking corticosteroid. Insulinoma is a serious concern. Did your doctors measure insulin levels at the time of hypoglycemia?

    Dr. Pheo

    ReplyDelete
  109. Thank you for your reply. The term insulinoma was mentioned a couple years back by the doctors in my hometown and a 4 hour glucose test was ordered at the lab where they were to pull blood every hour after drinking the orange sugar drink. I only made it to the two hour mark because by then I was shaking and in distress so they did a quick pull and poured juice down my throat. I believe the last my sugar was 2.1. After that they didn't try it again although it was mentioned a couple of months ago to try in supervised setting . However then they started to change theory on suspecting stomach area which is why the 24 hour urine was ordered for carcinoid and the endoscopy and o-scan are to be done.
    When I read about hypoglycemia it always mentions insulinoma however my two cat scans showed nothing on pancreas as of yet. It is just so foreign to my doctors I think :(
    Would an insulinoma affect blood pressure, cause tachycardia, and escalate chromigranin A?
    Not sure why stomach seems to be main concern . Perhaps the discomfort I've had . Just concerned with doubling of CgA in three months. Feel like by the time we figure it out it will be too late.
    I've read of a 72 hour fast. Is that only way to rule out insulinoma? Or could it be multiple areas.
    My dad had the thyroid medullary and his symptoms were so different, no hypo, no low blood pressure. Weight loss and fatigue were his main issues. Anyhow, I thank you so much. The last three years have been as you can imagine a roller coaster.
    One last thing, would a insulinoma be affected by foods you consume as before I gave up carbs, fruit, high GI foods etc i woke up with a reading of 0.7 one morning which was my first 911 call, this was within first onto of symptoms starting. Now that I've changed diet completely last three years the lows haven't been as bad although they are replaced by low blood pressure amount other things. Thanks again,you are a wonderful person to answer our questions... Any chance of you relocating to Toronto lol

    ReplyDelete
  110. Dear Jodsterbaker,

    There are a few possible scenarios to explain your symptoms and lab results. Let's see what the octreotide scan will show.

    Dr. Pheo

    ReplyDelete
  111. Dr. Pheo,

    After having a couple of short (30 second) flushing episodes I have a lot of lab tests run.

    Vanillylmandelic Acid, 24−Hr U - normal
    Histamine Determination, Urine - normal
    Substance P, EIA - normal
    Tryptase - normal
    Gastrin, Serum - normal
    Calcitonin, Serum - normal
    VIP, Plasma - 78.9 HIGH range 0-58.8 Lapcorp
    Chromogranin A normal
    Histamine, Plasma - normal
    Pancreastatin - normal
    Neurotensin - 45 LOW (50-100) range lapcorp
    Serotonin, Serum - normal

    My doctor said that VIP is normal. He said even though it is elevated it is not high enough to suggest VIPOMA.

    Lapcorp also printed this below the test.

    "Results for this test are for research purposes only by the assay's
    manufacturer. The performance characteristics of this product have
    not been established. Results should not be used as a diagnostic
    procedure without confirmation of the diagnosis by another medically
    established diagnostic product or procedure."

    They also said on their web-site that VIP is elevated in some healthy controls.

    My Dr. has been in the carcinoid field for 30 years. I trust him but am still concerned it is 20 pts. high.

    What is your opinion?

    Thanks chris

    ReplyDelete
    Replies
    1. Dear Chris,

      I agree with your doctor. When VIPoms cause symptoms, they are usually pretty big and the VIP levels much higher than your current ones.

      Dr. Pheo

      Delete
  112. Hi Dr Pheo,
    I have been seeing a new doctor for a variety of gastric symptoms; bloating, constipation, high blood pressure, flushing... He took a lot of blood tests last week and the 2 problems were vitamin b12 deficiency and elevated chromo level. I have been taking a lot of Nexium daily as well as lisinopril for bp and Celebrex. He referred me to an oncologist due to the elevated chromo. I'm 47, male. Haven't really had diarrhea but have had softer stools for years. Now I get bloating lately after eating. Any thoughts? I'm pretty nervous. The PPIs could explain the high chromo but the flushing seems pretty consistent with carcinoid syndrome.

    Thanks
    Mark G

    ReplyDelete
    Replies
    1. Hi Anonymous,

      Carcinoid is unlikely overall. If you are concerned of carcinoid, you can measure urine 5-HIAA.

      Dr. Pheo

      Delete
  113. I'm a 46 yr old male; a small submucosal nodule was found in rectum during routine colonoscopy. No other gastrointestinal symptoms or complaints. The nodule was removed 3 months later via trans-anal surgery. Pathology report indicated it was a small 3mm carcinoid. While surgeon was confident I am now cured, 5HIAA 24-hr urine test and octreotide scan were ordered as a precaution. Both results were normal, urine @ 3.8, octreotide scan "unremarkable." Surgeon is not concerned, and is confident I'm in the clear. However Chromogranin A blood test was not ordered. At this point is this necessary?

    Other details: my blood pressure varies a bit. I seem to have white coat hypertension which can be quite high in medical environment, sometimes 150-160/90-100 but normal at home in the 117/67 range, as I monitor and log BP regularly and have annual physicals where BP has at times been in normal range 120-130/80-90 - apparently BP is anxiety-related. Pulse is around 55-65, around 80-90 after exercise. In fact during octreotide scan my BP was surprisingly 127/85 as they were monitoring me during injection of the medicine - probably because I was relaxed, lying down. I have no flushing or breathing problems. I do have occasional cough, but seems related to nerves. I eat well, jog several times a week, no complaints.

    My routine annual bloodwork has always been normal, with creatinine on the higher end of normal around 1.1 for years. I did have acute glumerulonephritis as a very young child, which resolved and never recurred. I also check my PSA annually (family history of prostate cancer) and it has been normal between .9 and 1.1 for years.

    Again, since the urine and octreotide scan were normal, is Chromogranin A and/or other testing advisable? I'm trying to put this carcinoid episode behind me and am a little concerned my anxiety and/or BP may affect the Chromogranin A test and lead me down another path of uncertainty. On the other hand, is it prudent to keep looking in case there might be something else going on? Thanks for your thoughts.

    ReplyDelete
    Replies
    1. Dear Etiou,

      I agree with your surgeon. Chromogranin A won't give you much new information but may cause anxiety if positive for other reasons.

      Dr. Pheo

      Delete
  114. Hi Dr. Pheo,

    Great work on the article it is the best I have found so far. I was hopping you could post the formula to convert from nmol/L to ng/mL for Chromogranin A (CGA)? Also do you of any studies showing how much PPI elevate CGA over baseline?

    Cheers,
    Luke

    ReplyDelete
    Replies
    1. Dear Luke,

      Thanks for the compliments. The conversion is very theoretical thus does not mean too much. PPI can raise CGA to really high values, even over 1000 ng/ml.

      Dr. Pheo

      Delete
  115. Dear Dr. Pheo,

    I have been on Tramadol for 5 years for Lupus and other pain. Can the serotonin produced by Tramadol cause or create Carcinoid cells or tumors? Thank you very much for serving us!

    ReplyDelete
  116. Recent results:
    Labcorp CGA=4 nmol/L on the 0-5 scale.
    Serotinin Serum 82 ng/ml with the reference interval 21-321.
    Test was provoked due to several months ago I simultaneously developed high blood pressure and spontaneous facial flushing. Now am on Losartan for high blood pressure which reduced the facial flushing but did not eliminate it.
    Thoughts?

    ReplyDelete
    Replies
    1. Dear Anonymous,

      Carcinoid is very unlikely.

      Dr. Pheo

      Delete
  117. Dr. Pheo,

    In response to symptoms of flushing for 1+ year combined with changes in stool and urine a dermatologist has ordered 24 hour 5-HIAA to rule out carcinoid syndrome. Carcinoid.com reports "5-HIAA only becomes elevated when carcinoid tumors have metastasized to the liver."

    Is CgA a better preliminary diagnostic test than 5-HIAA? I fear the dermatologist may have chosen a least-preferred option. He had to leave the room to go look up an appropriate test for carcinoid syndrome, it is understandably outside his area of expertise.

    ReplyDelete
    Replies
    1. Dear Anonymous,

      24-hour urine 5 HIAA is the most specific test for carcinoid syndrome. It is complementary to CGA. I usually order them both along with serum serotonin to get maximal information.

      Dr. Pheo

      Dr. Pheo

      Delete
  118. Hello Dr. Pheo,

    Im a 39 year old female, just received test results for CGA that showed elevated levels of 66 (per Quest labs). My GI doctor ordered the test due to on going GI issues not responding to treatment. I have been on PPI's for roughly 6 months. Would such a short time on PPI's have an affect on the CGA levels?

    ReplyDelete
    Replies
    1. Dear Anonymous,

      The 6-month treatment can cause elevated CGA levels.

      Dr. Pheo

      Delete