A few readers have expressed interest in seeing me for a formal consultation. I appreciate their encouragement. I do often see patients from other parts of the state or country. Seeing an outside expert has some pros and cons.
Pro 1. Definitive answer to specific questions. By the time you feel the need of seeing an outside expert, usually you already have done a lot of tests and imaging and received various opinions. The outside expert has the vantage position of reviewing all of the information and your natural clinical course. Of course the expert is also most experienced on some specific diseases. Whether the answer is yes, no, or further studies needed, you will have an answer.
Pro 2. Getting the best diagnostics and treatments. The outside expert usually works in an academic medical center and works closely with other experts. They can see things that were omitted before and usually do things “right”. Further diagnostic procedures and surgical operations are usually carried out by expert physicians as well.
Con 1. An expert is an expert on certain diseases but not on all diseases. Sometimes my patients are impressed by my knowledge on pheo and other neuroendocrine tumors and they assume that I know everything. I always explain that I do know a lot about pheo and other rare tumors and I am a good general endocrinologist as well, but my knowledge on other medical conditions is limited. Thus an expert can give you definitive answer to your specific question but she/he cannot solve all of your health problems.
Con 2. Follow-up is challenging. Patients and their diseases are ever-changing. For chronic and non-emergent questions, you can easily communicate with the expert by phone or email. For acute issues, it is important to ask a local physician who knows your condition well. Remember that the outside experts usually have responsibilities in research, teaching, and administration, besides clinical care. The expert may go to a scientific conference or vacation. All these make accessibility an issue.
Con 3. Extra cost and insurance coverage issues. These are self-explanatory.
Based on my experience, I believe there are some general rules-of-thumb on whether a patient should see an out-of-town specialist and how the patient can benefit the most from an outside expert. Here are my recommendations:
1. Find a local doctor who you trust and like and who has some basic knowledge on your condition. For pheo-related diseases, an endocrinologist or an internist is a good choice. This doctor has to be open-minded and comfortable at learning new knowledge.
2. Either ask the local doctor to identify an expert or find one yourself. Ask your doctor to contact the expert, explaining why the patient needs to see the expert and what specific questions need to be answered.
3. Before you go, send all doctor’s notes, lab results, CT/MRI and other imaging studies on CDs (not just the reports) to the expert.
4. When you are there, remember the specific questions your doctor and you want to ask the expert. Be realistic about what the expert can do (give definitive answers to specific questions) and cannot do (cure all ills). The expert may already have arranged additional diagnostics and possibly sessions with a surgeon or other experts so that you will have more efficient use of time there.
5. After you return, work closely with your local doctor and make sure that the local doctor and the expert communicate. Carry out the plan laid out by the expert and consult the expert on non-emergent questions. For emergency questions, you have to be lucky to be able to locate the expert all the time. Your local doctor is your best help.
What about seeing Dr. Pheo? All the rules apply. In addition, I will ask you to respect my wish to be anonymous as Dr. Pheo. Of course you will know my real name before you actually see me but please do not divulge Dr. Pheo’s identity publicly. I will post one of my email addresses later.
By the way, I will be on vacation from late August to Early September and may not have internet access during that time.
Dr. Pheo
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How does one get a highly specialized, expert opinion on paragangliomas in CT scans? I am concerned that even at research hospitals, the radiologist may never have seen a liver paraganglioma and may confuse it with benign hemangioma, especially if it is slow-growing. Both types of masses are highly vascular and would be hypodense on CT scans.
ReplyDeleteI have had at least 3 slow-growing paragangliomas excised, one of which was deemed to be a pulmonary metastatsis of a retroperitoneal paraganglioma. The research hospital surgeon was convinced following surgery that he had excised a fungal growth only to learn from the pathology specified by the endocrinologist that it was a paragangliom.
In the past two years, first one and now two small (4 mm or less), stable hemangiomas have been reported in my screening CT scans. The lesions are beneath the resolution of a PET scan.
The lung paraganglioma (2 cm) was reported as stable over a six month period. The radiologist and pulmonlologists did not identify it as a paragangloma. I agreed to surgery on the pulmonary mass after it showed up with very high activity on a PET scan.
Dear Eve,
ReplyDeleteYou raised a good point. Especially for patients with rare tumors, imaging results should be read together by radiologists and clinicians, rather by radiologists alone. I have a few patients whose radiology reports recommend "no more follow-up is needed" but turned out to have pheo. The clinicians should incorporate clinical, lab tests, and imaging to make a best judgment.
Dr. Pheo
Hi dr. p.- I am newish to the blog. I have learned over the course of 3 yr illness that when it is s/t this abstruse it is best to see an expert. You, for understandable reasons, do not list identifying info - so how does one think about possibly seeing you? I live in NYC -get the feeling that you don't practice here or nearby. If so - would most definitely consider it. Thnx, Edith.
ReplyDeleteDear Edie,
ReplyDeleteOnce you have all the lab results, post them with reference ranges as comments (keep anonymous, please!). We will have a better idea then. Check my list of pheo doctors. Any of them is great. A few of them are close to NYC.
Dr. Pheo
Ok- thanks!
ReplyDeleteDr. Pheo -
ReplyDeleteWhat do you know about octreotide scan for peptide tumors? Sensitivity, etc. It has been recommended for me. Can't find satisfying expert info. Edith.
addendum - neuron specific enolase and the chromogranin A tests were both positive. Informed that 24 hr urine unremarkable (but i think not ordered properly - no preservatives, no instructions other than pee for 24 hrs.) This communication was with the RN by email, so am looking for info to prepare to see Dr. The the recommendation is the octreotide scan, which i ascertain is for peptide-producing tumors. Also that it is nuclear. I'm not pregnant, unless it is the second coming. Do have benign thyroid nodules. If you are on vacation, hope you are enjoying it, and will hear from you later. Edith.
ReplyDeleteThank you for your wisdom,家唐銘. However, it is a bit abstract for my current need. I am interested in concrete info about the octreotide scan. Surpised I haven't heard of it. Is it related to MIBG? Don't want to do it, if not good test. However, of course will if indicated. Dr. who suggested it is quite good (I think), but this is not necessarily his specific area of expertise. Google results were not adequate for me to understand enough. Thx, Edith.
ReplyDeleteDear Edie,
ReplyDeleteTo determine if you have pheo, you should do a plasma metanephrines test.
Please read my post on chromogranin A. Are you taking anti-acid treatment?
If you do not have non-tumor causes of elevated chromogranin A levels, you may have a neuroendocrine tumor. It is better to see a specialist for further work-up. The octreotide scan lights up any tumors with somatostatin receptor (most neuroendocrine tumors have the receptor). It is not used as a screening test. It is different from MIBG scan (which you should not do now).
Dr. Pheo
RE: spams
ReplyDeleteTo all,
This blog, like other popular blogs, is often attacked by spams apparently generated from Asia. They often leave a comment that you might think are directly borrowed from an old fortune cookie. If you click their link, you will be directed to internet sites of bad taste.
I try to delete those ASAP but sometimes they have some tricky ways to resist deletion.
Dr. Pheo
Hi Dr Pheo
ReplyDeleteI am struggling to find info about the long term effects of increased catecholamines on the body. Does the body get used to grossly elevated levels (42,000+) and adapt accordingly? Can someone with pheos become resistant to alpha blockers (phenoxybenzamine) after a period of time? Are sustained levels of increased catecholamines (rather than sporadic increases) a worry?
Thanks Jane
Dr. P. - thnx again for your response. Quite astonishing, and I don't take it for granted (thought u were supposed to be on vacation!) I am recently increasingly symptomatic. Guess it is time to see sub-sub specialist, who do not take my insurance here in nyc. Agree that it may be other endocrine tumor, etc. A bit worried that they may have depth of knowledge re pheo but not breadth regarding other possibilities. Manger is my choice to consult with now. One concrete question - b/c of increased crazy pulse, re-instituted beta blocker (atenolol - low dose for now). To my suprise, just perused insert, and it said not to use in case of untreated pheo. Do you know of this, and why? kind of need it now, and am using. my other doctors do not know of this.
ReplyDeleteI just saw your post about the weird asian spam thing. You can see how I handled it (but best generally to just ignore). The 'fortune cookie' description was so accurate! Who are these people? I figured, this is your blog, and if it's not you, I will not click. People, never click on anything that is not from known source! In this case, Dr. Pheo.
ReplyDeleteDr. Pheo - have seen recent scholarly publications (can get only the abstracts on-line via pubmed etc.) that seem to indicate that alcohol, nicotine would interfere with metanephrine test etc as a false negative, rather than a false positive, which i would not have thought. do you know about this? I would attach literature, if i knew how. These are questions that only the experts would know - dk who else to ask. edith
ReplyDeleteI was positive in 24 hr urine metanephrine test, the ct scan showed prominent apical portion of the left adrenal gland with areas punctate calcifications. my doctor ordered an AVS, do i need to undergo such a procedure? we do not have mibg and plasma metanephrine test here in the philippines, thanks
ReplyDeleteDear Dr. Pheo,
ReplyDeleteI wish I could talk to you on a more personal level. I do respect your wish to remain anonymous.
My case does pose some uniqueness and I think you would be interested in hearing more about it.
Take care,
Tisa
Dear Tina,
ReplyDeletePlease post your questions anonymously.
Dr. Pheo
Dear ena,
ReplyDeleteThe AVS is seldom useful. What are exactly your urine metanephrines levels (with normal reference range)?
Dr. Pheo
Dear Jane,
ReplyDeleteThe issue is controversial. I tend to think that the body does not get used to high catecholamines to a significant degree. Same situation with phenoxybenzamine. If your husband's blood pressure is not controled with phenoxybenzamine, he should add other anti-hypertensive medications.
Some patients have apparently normal blood pressure without medications even with high levels of catecholamines. It is a dangerous situation. Please read my post on "silent pheo".
Dr. Pheo
Dear Edie,
ReplyDeleteSome beta blockers increase the blood pressure. In patients with pheo, they can elicit a crisis.
The list of pheo test interferences is getting longer by the day. The best strategy is to do plasma metanephrine by mass spectroscopy which is virtually free of chemical interference. Physiological interference requires the doctor to evaluate the whole clinical picture.
Dr. Pheo
Interesting about the beta blocker. I'll let my doctors know. Leads me to another Q - lots of info about pheo/chatecolamine tumor, etc. and hypertensive episodes. What about the epsiodic elevated pulse? Is this part of syndrome, too? It isn't mentioned much, but is the most uncomfortable sx for me, thus the beta blocker. Hope you had a nice vacation - i'm on mine soon. Also -another weird korean thing above. ignore. Edi.
ReplyDeleteThanks Dr Pheo.
ReplyDeleteHope you had a great vacation and a well earned rest. Ian is already on 80mg slow release propranolol overnight and 40mg during the day as well as 40-60mg phenoxybenzamine a day. Still averaging 190/130 BP sitting with a massive postural drop. Pulse around 85. He obviously feels like he's running a marathon every day and is struggling with fatigue. He is concerned that any further increase in blockers will just make him more fatigued.
We will discuss with the Endocrinologist in September.
Regards
Jane
Hi Dr. Pheo,
ReplyDeleteHope you enjoyed your vacation! I am scheduled for surgery at Mayo Clinic Phoenix on Sept 8. The surgeon had called me and said after examining my outside scans and mri with the Mayo radiologist that surgery is necessary that the growth is abnormal looking and not typical of an adrenal adenoma. The Mayo endocrinologist says that my blood and urine tests are not convincing. The only thing above average was my norepenephrine level. 3x. not enough to red flag it. So, is it possible that if its not a pheo, then could it be cancer? I am on the meds to get me blocked for surgery. I am repeating my 24 hr urine and blood tests. I drink alot of coffee and iced tea should I refrain while doing the tests? I am nervous about surgery.
Dr. Pheo,
ReplyDeleteRegarding medical tourism - Recently there has been an increase in the number of web site posts about pheo surgery being available in India. While it is presumptious for me to assume that only surgeons in westernized countries are qualified, there is something about going to a low cost provider in another country just doesn't sit well with me. Also a country like India with over a billion people do need qualified doctors for this surgery - and there are people from other less economically prosperous countries that need surgery. What is being done to educate and train physicians/surgeons worldwide so proper care and treatments are available? Do you see robotics and tele-surgery as a way to bridge gaps in surgical skill?
Dr. P. - My Pcp and Gi have concurred on recommendation for octreo scan at this point. Labs not highly indicative (elevated chromagranin, neuron specific; vma - slighlty), but hx appears to be significant. Problem is, the damn thing is so episodic - it lasts for a few days to a couple of weeks. It is usually a long time (weeks) from onset till when i get labs, as i must take time off of work to see dr, order test, go thru insurance etc. Additionally, i do what i can on my own to feel better ( no lifting, coffee etc) as it is very uncomfortable, and i must stay functional. So I am no longer as acute when i finally do test. My Q is this: Octreo scan is expensive, and insurance will put up a fuss. I don't want to waste this opportunity, if approved. How important is it that I am experiencing an exacerbation at the time, or can it detect these sorts of tumors at any time? Obviously, I want to do it asap, however, will wait to get the most accurate r/o, as it may not be this. Thanks, Edi.
ReplyDeleteDear Edie,
ReplyDeleteFast pulse is a sign of pheo.
The octreotide scan has a low utility for detecting pheo but can detect other neuroendocrine tumors.
Dr. Pheo
Dear Jane,
ReplyDeleteControlling the blood pressure is important. Other blood pressure medications such as calcium channel blockers and ACE inhibitors can also be used in addition to the alpha and beta blockers.
Dr. Pheo
Dear Theresa,
ReplyDeleteYou probably already have had the operation already. My guess now is that it is a pheo. The likelihood of cancer is low.
Dr. Pheo
Dear DJPheo,
ReplyDeleteI am not a surgeon. To my knowledge, there are programs on bridging the gaps of surgery between the developed and developing countries.
Dr. Pheo
Dr Pheo I had a pheo removed and during surgery my heart failed and I ended up in the ICU on a respirator with many months of fever with hip pain and intense sweating.
ReplyDeleteI still do not feel healthy after its removal several years later and I am now experiencing a high heart rate, high blood pressure, elevated aldosterone levels, fluid retention, kidney pain, sweating etc.
I recently had a MRI which showed that several clips had been left in (I am allergic to surgical steel earrings) and that the adrenalectomy had been a partial adrenalectomy. My doc specifically said that he would be removing the entire left adrenal.
Do you have any suggestions on the course of action I should follow. The docs here feel like there is nothing wrong. Would you recommend me seeing you?
I can not find the list of docs you recommend for pheos?
Susan0802,
ReplyDeleteThe doctors list is on April 29, 2009 post. I would recommend that you see one of the pheo specialists listed. There is no need to see me specifically.
Dr Pheo, My friend is under the care of a cardiologist and endocrinologist and appears to be given drugs that are contra indicated for Pheo whilst they are trying to confirm a Pheo. for instance the cardio prescribed Labetalol. what are the best drugs to prescribe pre pheo confirmation to control the surges which are vausing him distress now before total confimation?
ReplyDeleteRegards, Jacob
jacobean,
ReplyDeleteThe best strategy is to draw a blood sample before starting any medications. If the suspicion of pheo is high, alpha blockers, calcium channel blockers, ACE inhibitors, and ARBs are all fine. If the suspicion is not high, labetalol is not a bad choice.
Thanks for your reply Dr Pheo. My friend has had his abdominal MRI without contrast (due to allergy concerns) and is waiting for the result. In the meantime he has now received an appt for an MIBG scan. he has voiced his concerns regarding allergy to his Endo but has been told the scan must go ahead and a PFM is not readily available. My friend is really concerned about the MIBG because he has a highly allergic past history and is concerned that a reaction to the drugs/injection could cause a hypertensive crisis due to a histamine release provocation or just a severe allergic reaction. He has been advised that corticorsteroids could be given pre procedure but he has CSR (Central Serous Retinopathy) so its not really an option for him. In light of all this, should he insist the PFM is performed first to indicate the likelihood of Pheo rather than risk the fallout of a MIBG test to prove/disprove a slightly elevated 24 urine test although pheo symptomatic as well. Depending on the result of the PFM and MRI what should be the next steps regarding both a negative or positive result?
ReplyDeleteDr Pheo,
ReplyDeleteMy friend has had the result of his abdominal MRI (no ccontrast) and it was entirely normal.
Should he cancel the MIBG in light of this and confirm the PFM ststus? as the only indicator so far is one weakly elevated 24 hour urine test and the second being normal range.
jacobean,
ReplyDeleteIt is unlikely that your friend has pheo. MIBG scan probably won't help much. The best approach is repeat testing with plsama or urine metanephrines (if plasma testing is not available).
In patients with high likelihood of extraadrenal pheo but are allergic to MIBG, I use PET scan.
Hi Dr Pheo! My friend continues to have 'episodes' and is getting increasingly worried about his imminent MIBG scan as the PFM is a def non possibility. His fears regarding being allergic to the dyes makes me wonder if a full body MRI without contrast would be as good as an MIBG? The previous abdominal MRI has ruled out the normal location for pheos but the MIBG was being performed to discount tumours outside that area. He is in one hell of a state and I am genuinely fearful how much his fear and tension is affecting his health nevermind whatever is causing the episodes. He continues to complain and worry about a sharp intermittent pain in his left hip which he has discovered can be a symptom of bone pheos (I told him to stay away from Google). I tried to explain to him that the abdominal MRI would have covered the pelvis and would have picked up anything like that. Am I right in telling him that? I know if he was able to have an effective scan without dyes it would alleviate this mindset he has got into. I look forward to your response.
ReplyDeleteRegards,
Jacobean
jacobean,
ReplyDeleteI suggest that your friend repeat the urine studies in a few months. I agree with the pelvic MRI. MIBG scan in a patient with low clinical suspicion does not help much.
Hi Dr Pheo,
ReplyDeleteThe ongoing saga of my friend continues...he did have the MIBG scan in the end (spent a week recovering from the allergic reaction to the potassium iodide tablets....he did warn them.....) anyway the scan was negative (no real surprise there) as you have previously indicated. His third set of urine tests continue to show consistent mild elevation but on the back of his MIBG result his Endo clinician has stated he definitely does not have a Pheo and has referred him back to his Cardiologist.
My friend feels this approach has not conclusively ruled it out and has been experimenting with his diet and found that since switching to meals containing foods that are low in tyramine that he has not had an episode after a meal since (Previously this was happening fairly frequently) making him continue to wonder about a Pheo. The only triggers now for episodes have been urinating or defaecating where the HR jumps to 175 bpm then gradually settles to about 120 for a few hours before normalizing and BP spikes very quickly and then normalises. The aftermath appears to be a vasconstriction which causes him to fight for breath and feel tight chested with hyper sensitive HR on exertion.
My friend has now been able to schedule a PFM test independent from his Endo in 2 weeks time. However, in the interim he is reluctant to try the Propranolol prescribed by his GP because he feels Pheo has not been conclusively ruled out until after the PFM result is known and is worried about the potential hypertensive implications of lone beta blockade.
What medication would be the most appropriate at this time to try to attempt to control his HR racing symptom in the interim? If the PFM test comes back negative, can he safely assume Pheo is very unlikely and feel comfortable about the lone beta blockade being advocated by all his doctors?
He cannot source the pelvic MRi now as he cannot get the Endo to agree to any further testing.
jacobean,
ReplyDeleteSince it is unlikely that he has pheo, beta blocker use by itself is safe, if indicated. I don't know, however, what the underlying diagnosis is.
Hi Dr Pheo,
ReplyDeleteMy friend is having his PFM test tomorrow. However he has been given the detailed report from the MIBG scan that showed the following:-
"Although there is minor uptake seen at the region of the left adrenal on the whole body images at 24 hours, the SPECT images demonstrate there is on fact symmetrical uptake in both adrenals and is usually regarded to be within the normal physiological range"
My friend has also had another elevated urine result of urine metanephrines (his third one) 1.4 umol (nr less than 1.2) and Urine Creatinine is 17 mmol (nr 7.0 - 16.0).
I thought any uptake on the adrenals for an MIBG should be considered to be abnormal?
The Endo wrote a letter saying he was discharging him back to the cardiologist, should be happy with this?
What else can he do? PET scanning ?
Regards,
Jacobean
The MIBG scan results do not suggest pheo. There is no need of further imaging. He unlikely has pheo. He can do clonidine suppression test to confirm that.
ReplyDeleteDr. Pheo
Hi Dr. Pheo - I really appreciate your work as does everyone in the world of pheo. My specific question is when does the level of scanning received by a patient become of concern for other cancers and medical complications? There seem to be many opinions out there.
ReplyDeleteI am a sporadic metastatic para and attend the NIH, where they are very diligent at spotting tumors, but employ 6 monthly checks with at least 1 MRI, and either a PET or CT. Effectively, I am therefore still getting 2 MRI's and 2 PET/CT's per year and have had 23 total scans since 2006 including 2 Mibgs and one mibg infusion. What is the radiation exposure relating to this kind of scanning regime?
To gie you a more complete picture, I was diagnosed in late 2006 and have had 4 tumors in all - the primary was 10cm on the paraganglion, plus 2 small ones on the left lung - all surgically removed. My last tumor was 3.5 cm on the liver very close to the IVC, ablated by RFA in 2009. I have been tumor free since this last op.
My tumors are very detectable with metanephrine levels and so I wonder whether this level of scanning is counterproductive in the longer term. What in your opinion is a sensible scanning regime for someone such as myself please?
Regards,
Allen
Dear Allen,
DeleteThis is a very important issue. The choice of imaging modality and interval of scanning should be determined according to the patient's unique conditions and likely tumor growth speed and aggressiveness. Your doctors and you should address this issue explicitly and figure out the benefits and risks of frequent imaging. Based on your description, I would do plasma metanephrines every 6 months and perhaps a PET/CT every year.
Dr. Pheo
Hi Dr. Pheo,
ReplyDeleteAllen here from the Pheo Paratroopers. I'm in the process of designing a series of podcasts with different experts on specific aspects of pheo - e.g.. RFA, MIBG genetics etc. would it be possible to discuss this and maybe get your thoughts your idea of suitable accessible physicians who are patient friendly, off blog, whilst maintaining your anonymity? my email is paratrooperallen@gmail.com. Hoping to hear from you soon. Allen
Dear dr pheo......what should one do when one urine test comes high.and when refid comes back low.....
ReplyDeleteWhich test is it?
DeleteDr. Pheo
I am a 59 yo white female who was diagnosed with papillary thyroid cancer @ 39 and a parathyroid adenoma @ 53.
ReplyDelete3 years ago I had a sudden case of A fib and tach. I was put on Cardizem CD by the ER dr and kept on it for over a year by my endo. No test ever showed a reason why I should have it, although my endo kept saying my thyroid meds were too high. In the fall of '13 my cancer returned. When I asked to change to a different thyroid med I was able to wean myself off the Cardizem.
In the spring of '14 I had a couple bouts of flank pain I put off to maybe a kidney infection (only symptom). A week later I started having day after day of vicious headaches and tremendous fatigue. I thought possibly I had contracted West Nile Virus as I live and had recently traveled in an area where it is found.
In Oct I remember telling my orthodontist that I had just spent 4 of the last 5 days with excruciating migraines that had left me more drained than I had ever remember happening. I was also beginning to find reasons to not travel or enjoy the things I did on a regular basis.
The day before Thanksgiving I had an episode where my BP shot up (eventually 214/??) and my pulse was 120. I went to the emergency room. An EKG, blood gases & chest x-rays were done; all were normal. 2 hours later, while waiting to see a dr. I started having hand tremors that lasted a minute or so. 3 hours later at my endo's office my face became so flushed I was given an ice pack to take the heat & discomfort out of it. She gave me Clonidine for hi BP and Cardizen if hi BP accompanied by tach. She also ruled out a carinoid w/ a urine test. (The Clonidine has worked wonderfully in subsequent attacks.)
The following day I started feeling uneasy, that quickly escalated to severe stomach cramps and nausea; my BP & pulse were also elevated. An RN friend of mine had me take a Clonidine & put a heating pad on my stomach. Eventually all the symptoms subsided.
In the following days I've found that magnesium glycinate helps dissipate the stomach cramps, but I have slept w/ a heating pad many nights simply for the ache. I've also having severe bouts of pain in my left side (between my waist & rib; 3/4 of the way from my navel, at the side and in my back). Sometimes it is sharp, other times it feels like a bad case of road rash. (I've found any caffeine precipitates an attack of this pain, but apparently is not the sole instigator.)
I've also had problems with my BP in these ensuing days. Sometimes it's normal, sometimes it's low 90/60's (it got to 88/58 one evening - no Clonidine for over 24 hr) and sometimes it goes up pass 150/105. I've found severe emotional stress (impending biopsy) and simple physical exercise (planting a sm potted plant) can elicit the hi BP.
I live in a rural area. I diagnosed my Hosimoto's, my thyroid cancer and parathyroid adenoma. I had dr after dr tell me my test results were normal. My 16th dr (4th endo) treated the Hosi's and eventually gave into the surgery that found the 2 cancerous nodules. I pushed back against tests for recurrent cancer, asking for the Sestamibi scan that found the adenoma & went to MD Anderson to have it removed. I've now had a metanephone urine test that came back normal, but I question how the sample was handled and I've had a CT of my abdominal region that was said to be normal, but they were acting off a recurrent thyroid cancer DX. I am scheduled to go to Anderson tomorrow for my semi-annual check-up, but also to see about being tested for a pheo.
I'm terrified I will revist the 16 dr to DX with Hosi & the 3 x 3 dr for the cancer & adenoma scenarios. Am I off base that a pheo may be my problem?
Dear Mabry,
ReplyDeleteIf the metanephrines test results were not due to error, pheo is highly unlikely. Dr. Camilo Jimenez at MD Anderson is a specialist on pheo. You may want to see him for opinions.
Dr. Pheo
Thank you very much.
Delete