Today I will go over some intricacies of pheo imaging. The post is suggested by readers and I will answer some particular questions they have.
For most patients with real pheo, finding the tumor is rather straightforward. Most pheos are about 4-6 cm in diameter and have unique features. CT or MRI describes pheo well. An MIBG scan is then done to see whether there are other pheos lurking in the dark somewhere in the body. Unfortunately for some patients with real pheo and for a lot of patients who do not really have a pheo, imaging can be confusing.
First, for Peep, let's discuss how radiologists make a diagnosis. I work closely with quite a few great radiologists and begin to know their mindset. Radiologists are great at seeing things most other doctors don't see. But they will never be completely sure what the things are because many things can appear the same way. They need clinical information to make a judgment. So Peep, when your urine test results were very high, they will search your body from neck to pelvis trying to find something that might be pheo. A lymph node, or an uncommon normal variation of the shape of a normal organ, can be interpreted as potential pheo. Now the urine results are normal, radiologists will think you probably don't have pheo and take the same findings as what they normally are: lymph node or normal variations. So the same radiological finding in two patients can be read by radiologists as two different diseases. Think this way, the same red liquid in a fancy glass in an expensive restaurant probably is some great wine, while it must be melt lollipop if you see it on the pavement with a stick in the middle. Therefore, Peep, you may have some structures that are not exactly common but can be normal. What they are depends on the risk of your really having a pheo.
Second, for Dennis, let's discuss about MIBG scan. This is the single most misinterpreted imaging for pheo. MIBG scan itself is a great test. It is just some doctors do not know what to make of it. Technically, as Dennis points out, there is an I-131 MIBG, and there is an I-123 MIBG. In a nutshell, don't use the I-131 MIBG for diagnosis (it is used for treatment of pheo). Only use the I-123 MIBG which has a much better signal/background ratio. I-123 just gives much sharper pictures. Second, MIBG scan does not diagnose anyone with pheo, it just shows where the pheo is. As I discussed in a comment before, normal folks often have one adrenal taking more MIBG than the other but they don't have pheo. Nuclear medicine doctors, like radiologists (and any other doctors), will try to find a pheo if they are told there is really a pheo in a patient. If you use photoshop, Dennis, you will know that you can find something you like by adjusting the threshold, the contrast, or the color. If they know the patient has low risk, they will think a little spot might be just a fluke.
The key thing is communication between the endocrinologist and the radiologist. I used to routinely discuss with radiologists on every single case. Now that I know a little about pheo imaging, I still read every patient's images and I will call the radiologists when I feel something is not right. A pheo specialist should be a mini-radiologist on the adrenal gland, at least. My radiologist friends will call me as well if they feel something is not right.
Back to Dennis' point, the most likely place where endocrinologists and radiologists communicate to each other is an academic center with experience on pheo.
Dr. Pheo
Friday, April 17, 2009
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The radiologist looking at my sons CT scan only dignosed one tumor, later another Dr. saw that there were two. My son had to go thru two surgeries because of the missed diagnosis. What do you think?
ReplyDeleteDid your on get an MIBG scan with I-123? How old was you son when the first radiologist read the CT images?
ReplyDeleteMultiple pheos have to be suspected in young patient, patients with family history, patients with known mutations, or patients with previous pheo.
If MIBG with I-123 was done (it should be done) and only showed on pheo, I won't necessarily fault the orginial radiologist. Hindsight is always 20/20.
Dr. Pheo
I can understand how things are missed in scans, because I used to work with x-ray images all the time. If it's a two-dimensional image, all it takes is something to be turned and you get a completly different picture of what you once thought it was.
ReplyDeleteI had four 131-mibg's done and nothing showed on any of them. When I finally went to the Mayo they ran a 123-mibg on me and it was super bright and easily spotted. The FDA hasn't approved of the 123 yet have they? and that nuclear med has a short life span, so only a few hospitals do them. Do you happen to know which ones can do that type? (it may help those who are still searching...)
I am compiling a list of doctors and centers that are experienced with pheo. The availability of I-123 MIBG will be one factor as well.
ReplyDeleteI do ask readers to share their information on the doctors they feel competent and compassionate. Please do not send in names of doctors or centers that should be avoided. It will make the blog too complicated. We only need to know the good ones.
Dr. Pheo
This comment has been removed by the author.
ReplyDeleteMy research has led my family (with SDHB) to the NIH in Maryland . We will see Dr. Pacak in May. My son with the two tumors is 21. First surgery was last May
ReplyDeleteMy I-123 MIBG report said "No abnormal focal tracer accumulation is identified in the planar 48 hour spot views of the abdomen, however, in the SPECT CT images there is a mild focus of increased tracer uptake in the region of the left adrenal, physilologic activity in the liver blurs in the right adrenal and very low level I-123 activity into the region of the right adrenal is not excluded.
ReplyDeleteThe mild focus of uptake in the region of the left adrenal, evident only in the SPECT (ie not planar) images raises the possibility or a pheochromocytoma)"
I had a bilateral vein sampling but only very high results on the left side, the right side has not been reached and the comment was "elevated plasma adrenaline result consistent with pheochromocytoma".
2 years after, doctors have no diagnosis and I'm still trying every medication that exist in pharmacies.
My doctor said, he thinks I have something on the adrenal but it might be too small and we have to wait for it to grow to be able to see it.
So my question is "is MIBG I-123 the correct imaging to detect pheo or should I have another sort of imaging or should I forget all about pheo ?".
Thank you Dr Pheo for this blog, it might help people like me who are searching for an answer.
Dear Choupette,
ReplyDeleteYou have a low probability of having a pheo. The adrenal sampling is not informative at all especially when the right side was not even done. The MIGB scan does not constitute evidence as well because it is a localizing test but not a diagnostic test.
The biochemical tests have to be done first to see whether you have pheo. What are the results of those tests? You can show me the results with the reference ranges.
Dr. Pheo
thank you Dr Pheo for your answer. I did have biochemical tests, sometimes giving elevated cathecolamines (but not 10 times more like the vein sampling), sometimes normal. Elevated aldosterone (laying and supine) and lack of potassium. Well I guess I just have to wait until we find the right answer.
ReplyDeleteDear Choupette,
ReplyDeleteThe high aldosterone and low potassium can suggest hyperaldosteronism (which also causes hypertension). I would suggest that you further test for that disease.
Dr. Pheo
Dr Pheo,
ReplyDeleteyou did not mention that some patients who have a pheo will not show anything on either MIBG scan because their pheo cells don't have the receptors and therefore will not take up the MIBG molecules. Case in point. I had a 6cm pheo (confirmed by surgical recection) that was clearly visible with MRI, CT and PET but totally invisible on MIBG scans (repeated 4 times). I have since had other pheos (also confirmed by surgical resection) that did not show up on the MIBG scans.
I just wanted to add this comment in case anyone was confused by a negative MIBG scan - if the blood and urine tests suggest a pheo diagnosis, a negative MIBG does not exlude the diagnosis - CT and MRIs should be done.
PheoG
Dear Betty,
ReplyDeleteThat's a very good point. The sensitivity of MIBG scan is about 90%--meaning 10% of pheos won't show on MIBG scan. The flip side is also true. People without pheo can have false positive MIBG results as well.
It is important to emphasize that MIBG is a localizing test, not a diagnostic test.
Dr. Pheo
Dr. Pheo,
ReplyDeleteMy husband has had symptoms for years. Sweating,headaches, high bp,etc. We just thought these were normal changes because of his high bp, age & doctors were not concerned. 2 months ago he saw a cardiologist & while in her office he had an episode of high bp, felt like he would pass out. She ordered a 24 hr. urine test. Came back with a suggested diagnosis of pheo. We went to the PCP at Henry Ford Hospital Friday 11/13. He ordered an MRI of ab & pelvic area. MRI was done on 11/14. He saw Dept Head of Endocrinology on Wednesday 11/18. He ordered a fasting plasma metanephrine & normetonephrine, a plasma renin activity & a plasma aldosterone level to complete 2 weeks after he stops taking tylenol. He said the MRI doesn't help w/ diagnosis & the radiologist didn't find anything. The radiologist wanted to do another scan. The Endo said not to do another scan. At times & more frequently now my husbands bp will shoot up to 180/120 for no reason. Is there an average time period for pheo diagnosis. If it's not a pheo we need to get to the bottom of the high bp. He has been 120/95 today all day. Last year his bp averaged 110/85 with Lotensin. He is on 6 different meds now and gets Depo injections because his pituitary does not function. I'm afraid of stroke or heart attack. He's only 48.
Thank you,
RW
Dear Rene,
ReplyDeleteI agree with blood test first. How high were the urine test results?
Whether to pursue further imaging depends on the test results. If the results are significantly elevated, more imaging is needed. If the test results are just borderline, it is unlikely that your husband has pheo.
Dr. Pheo
I see you describe the sensitivity of MIBG at about 90%, which I have also read previously.
ReplyDeleteHowever, this recent article from the NIH in 2008 says that they found an overall sensitivity of 76%.
Do you have any comment?
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2614907/
The "90%" is based on some older studies. The real sensitivity and specificity are both between 70-80%, if interpreted correctly.
ReplyDeleteDr. Pheo.