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Date of last update: 10/17/2017.

Forum Name: Endocrinology Topics

Question: Pheochromocytoma, Carcinoid and thyroid

 syralia - Mon Apr 27, 2009 7:49 pm

My health has been declinging for years, and no one can find the cause.

I have wildly fluctuating blood pressure (at my last Dr appointment he 'caught' the swings, when I got there it was 120/70, soon after I started flushing and sweating and he checked again, 190/100 (L arm) and 189/110 (R arm) and within 15 minutes was back to 120/60), sinus and tentricular tachycardia, flushing, sweating, flank pain and nausea. I cannot tolerate the heat at all, am losing weight (55 pounds in last year) and a single sip of anything alcoholic causes a flair.

I was tested for pheochromocytoma in 2007, everything was normal but the mets in the 24 hour urine (819 with a ref range of 320-600) and was told it was not that. I have also tested and been cleared for cushings, carcinoid, anything autoimmune (except Hashimoto's Thyroiditis which was diagnosed in 2007).

After my recent Dr appointment he put me in the hospital, and they sent me home within 22 hours with another 24 hour urine hold for pheo.

I have severe allergies to all MRI and CT contrast dyes, so they have only done a CT w/o contrast on my abdomen and found only calcifications in my spleen they decided as healed splenic granulomas.

I have also been told that I produce too much gastrin, causing the peptic ulcers, GERD and esophageal stricture.

All I know us that some days I am able to wash my hair and shower, even walk a little... other days I have to take breaks just brushing my teeth to get my breath back and my heart rate back down.

Any suggestions as to what I can look into for testing would be appreciated.
 John Kenyon, CNA - Wed May 06, 2009 9:30 pm

User avatar Hello --

There are several possibilities that jump out here, including of course pheochromocytoma. Also Graves' disease, for which you have a family history. Since pheo can cause the sudden, extreme BP spikes with return to normal levels, both it and hyperthyroidism can cause heat intolerance. All the other symptoms are rather similar, but with pheo more often than not patients wind up winded because of sustained high heart rate. However (again) there is such a phenomenon, with Graves' disease, as "high output heart failure", which causes very similar symptoms and the shortness of breath, intermittently, that you describe. I'm assuming because of your history and symptoms that you've been worked up for hyperthyroid, but this needs to be explored very thoroughly along with pheo. You have quite a family history of genetic, mostly autoimmune diseases, so a metabolic problem of some sort is not out of the question and your cortisol levels need to be double checked as well. Somewhere in this mix of metabolic disorders your problem probably lies and it will take a really sharp endocrinologist to pin this down, but it can be done.

I hope this is helpful at least. It's difficult, at a remove, and with your potpourri of family traits, to make a more concrete guess, but at least this may help guide the exploration of these various possibilites. Please follow up with us here as needed and keep us updated as to new findings also. Good luck to you.
 syralia - Sat May 16, 2009 7:17 pm

Thank you for your reply,

My 24 hour pheochromocytoma test results are back, but they refuse to discuss them over the phone and say there is alot to go over, it will be about a week before I am able to go in to hear the results.

I did have one thing that I had forgotten to mention.

Due to the neuropathy I have in both hands (luckily or not, mine is weakness and almost complete loss of sensation to my fingers and not the kind that causes pain) I shaved only when absolutely necessary. I have not had to shave under my arms at all for a few years now because no hair grows there anymore and hair elsewhere has thinned or completely gone away as well. My legs have only a few patches where hair still grows, my eye lashes have thinned considerably as well as my eyebrows but I still have a full head of hair even though I shed it constantly.

When I checked online, it showed Addison's Disease is associated with that, but with my blood pressure and heart rate issues being high (though fluctuating uncontrollably with extreme fluctuations in minutes) I have my doubts that is the issue.

My thyroid is low (Hashimoto's Thyroiditis) and that might have something to do with it.

I was wondering, is it even possible for MEN 1 to be involved with pheochromocytoma and Addison's? It would certainly explain why my blood pressure is so completely out of whack if I have two tumors that cause equally severe yet opposite cardiovascular reactions as well as the severe gastric issues, hair loss and perhaps even why I might have unexplained neuropathies.

Sometimes I feel that even if we are looking for the zebra in the horses we need to check closer because it might just end up being a zedonk or a zorse... a hybred that should not be there but is there none the less.

Should I even bring the idea up to my Dr or should I just hold off and see what happens?

Thank you.

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