Multiple abnormal hormone levels - Could it be autoimmune related?

Posted by wdd18054 @wdd18054, Feb 21, 2018

Hello,
I am wondering if there happens to be any other patients out there who are similar to me. Starting almost 10 years ago I have had continual problems with various endocrine glands and hormone levels produced by those glands. Below is an overview:
• 2008 – diagnosed with diabetes
• 2008 – Parathyroid hormone levels low, but my calcium levels were fine.
• 2009 – diagnosed with multiple thyroid nodules that resulted in total thyroidectomy
• 2012 – High, TSH, ACTH, Urinary Cortisol, Salivary Cortisol continued to test high for over 3 years.
• 2012 – High testosterone, which did return to normal, but in 2016 it returned and has remained High ever sense, along with high SHBG, DHEA-S etc.
• 2016 – Developed severe hypoglycemic episodes, they continue to occur, but have occurred less after reducing gluten in my diet.
The adult has eight main endocrine glands, I have had proven abnormal hormone levels from at least six of these glands.
• Pituitary – High ACTH
• Thyroid – High TSH, thyroid nodules, thyroid removed
• Adrenal – High Urinary cortisol, High salivary cortisol
• Pancreas – Diagnosed with diabetes (High glucose), hypoglycemic episodes
• Testicles – High testosterone
I have seen doctors at Mayo and Vanderbilt as well as my local doctors, but have yet to find any explanations as to what is going on. I have been given possible causes of Cushing’s, however they are not able to locate a tumor. A neuroendocrine tumor that changes the type of hormones it makes would make sense as well, or some type of issue with communication between the varies endocrine glands that is messed up.
Anyhow thought I would post this in the Autoimmune area as that is one place I have looked for answers over the years, in hopes someone else may have information that could help.
Thanks for your time.

@wdd18054

Teresa,
Carcinoid has been one of the many things I have thought about. I have had a PET scan, and Octerotide scan. In addition I have had Upper GI, and colonoscopy which didn't so anything.

May I ask what tests you had done that was able to identify your Carcinoid?

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Probably a Ga-68 PET/CT and if detected, a biopsy?

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Hello @oregongirl

You don't mention the problem you are having that brings up the need for repeated upper endoscopies. I've had one nearly every year for several years and while they are not high on my "to-do list." I get through them OK. You mention that you "want to be out." Are you referring to anesthesia? Generally, this procedure always involves some anesthesia so you are not aware of what is going on.

I wish you well and I hope that you post again with any of your concerns.

Teresa

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@lisalucier

Hi, @wdd18054 — thanks for providing all this information and background. Sounds like it's been a long road with these endocrine glands and resulting hormonal levels.

I'd like to introduce you to a few members who have mentioned some of the topics and conditions you are talking about, like @vdouglas, @retiredteacher, @gailb (diabetes); and @hopeful33250 (neuroendocrine tumor); and @predictable, @myqbrook and @ujeeniack (parathyroid gland).

@kdubois and @gman007 may also have some insights for you.

What kinds of symptoms are you experiencing from all of this, @wwd18054?

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I few years back I did have trouble with flushing, but never problems with diarrhea. However I still have trouble with the rapid heart beat from time to time still. The Upper GI's have all been fine, I have had 3 over the last several years. I have not had a EUS's, but due to having gastric bypass it is not possible to do EUS the normal way, or at least that is my understanding.

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@hopeful33250

Hello @oregongirl

You don't mention the problem you are having that brings up the need for repeated upper endoscopies. I've had one nearly every year for several years and while they are not high on my "to-do list." I get through them OK. You mention that you "want to be out." Are you referring to anesthesia? Generally, this procedure always involves some anesthesia so you are not aware of what is going on.

I wish you well and I hope that you post again with any of your concerns.

Teresa

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Teresa I had problems swallowing. But I have been fine. One less appt. Between the oncologist, the Rheumatoloist, I should rent an apartment nearby

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@nycdave7

did they do various imaging scans of your body to rule out ectopic tumors? Also how was the endos at Mayo Clinic Minnesota? Thinking of going there for Cushiing Syndrome since I have a very rare case of exogenous even though I stopped medication (eye drops) two years ago.

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The costs of the doctors visits were really no different that what I am being charged locally. However, there is really no way to say what the cost would be since there is so much variation on what each patient would need testing wise. I will say this the scheduling is wonderful, and I was able to accomplish more in a week at Mayo, it would have taken me MONTHS to have gotten it done locally and some of testing I would have had to went to Mayo as it is not available locally for me.

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@wdd18054

Teresa,
Carcinoid has been one of the many things I have thought about. I have had a PET scan, and Octerotide scan. In addition I have had Upper GI, and colonoscopy which didn't so anything.

May I ask what tests you had done that was able to identify your Carcinoid?

Jump to this post

I have had a 111IN-Octreotide in 2013, and in 2014 a F-18 FDG PET/CT of the chest. They showed a abnormality in the area of the tonsils and but felt this was nothing related or to be concerned about. Reports along with others also show a calcified area in my lung, but again the doctors felt there was nothing to worry about and it was not a problem.

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@hopeful33250

Hello @wdd18054

My carcinoids were found with an upper endoscopy (is that what you meant by an upper GI?). I have also had an EUS,endoscopic ultrasound, which can give a close-up of the pancreas as well as the upper digestive tract. In addition to the history of carcinoids, I have pancreatic cysts which are checked out periodically for growth and change. Have you had an upper endoscopy or an EUS?

In terms of lab work, annually I have a serotonin blood test which is always normal as well as a 24-urine test called a 5-HIAA, which has also been normal. There is also a blood test called chromogranin A (CgA), mine is always elevated, but this test can be elevated for other reasons (heart/kidney problems, etc.)

I look forward to hearing from you again. Solving medical mysteries is quite a challenge isn't it?

Teresa

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Yes, I have had 3 different upper GI's, as well as a colonoscopy. They were all fine, other than the colonoscopy showed I had a longer than normal colon which caused the colon to have more twists and turns.

I have had several years ago the 5-HIAA, which did show some mild elevation but repeated tests came back normal. My chromogranin A was tested several years ago and it was normal as well.

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@oldkarl

@wdd18054 Hi, friend. UUUHHHH….. Are you sure I did not write that? Anyway, All I have is a suggestion for you. Have your doctor contact Alnylam Pharmaceuticals and have them check your genetics, your RNA. Now, just a simple thought. It is quite possible, and some would say probable in any case, that in your body exist multiple autoimmune mutations of some autoimmune gene. Now, I cannot diagnose, as I am not a doctor, but in my case, it appears that my multiple mutations are of the hATTRwt type. There are a couple thousand varieties, I should think that Angela Dispenzieri and Martha Grogan at Mayo should also be able to help you.

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Funny you should post about genetics, my last appointment in Dec at Mayo was with the Genetics doctor, and I am waiting to get the results back, I am not sure if they will include what you mentioned but the panel he ordered is to cover almost 60 different endocrine related abnormalities.

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@nycdave7

did they do various imaging scans of your body to rule out ectopic tumors? Also how was the endos at Mayo Clinic Minnesota? Thinking of going there for Cushiing Syndrome since I have a very rare case of exogenous even though I stopped medication (eye drops) two years ago.

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If you don't mind my asking, what eyedrops were you using? I have used Restasis for over 5 years, and have wondered about side effects long-term. I also have or had Cushing's syndrome, but mine was due to adrenal tumor, which was removed last October, but still have Cushing's symptoms.

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@nycdave7

did they do various imaging scans of your body to rule out ectopic tumors? Also how was the endos at Mayo Clinic Minnesota? Thinking of going there for Cushiing Syndrome since I have a very rare case of exogenous even though I stopped medication (eye drops) two years ago.

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restasis cannot give you cushing since it is not a corticosteroid, although I heard cyclosporine can give you high blood pressure. I used corticosteroid eye drops like lotemax and durezol. Have you since tested for a 24 hour urine cortisol free test to see if you still have elevated cortisol? How is your blood pressure? Puffy face? Constipation? Verbal/ speech cognitive problems?

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@nycdave7

did they do various imaging scans of your body to rule out ectopic tumors? Also how was the endos at Mayo Clinic Minnesota? Thinking of going there for Cushiing Syndrome since I have a very rare case of exogenous even though I stopped medication (eye drops) two years ago.

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Dave, the answer to all of your questions is YES. What do you think that means? Look forward to hearing from you.

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@wdd18054 have you have any pharmacogenomics testing done?

I was sick for 12 years with wonky hormone levels, especially GH and IGF-1, and I had a ton of endocrine symptoms (profuse sweating, facial flushing, weight gain, and more). My home medical center diagnosed me with a rare endocrine condition and treated me for it, but I kept getting sicker. Sensing they had misdiagnosed me, I did a lot of online research and then took myself to Mayo and asked them to test me for drug hypersensitivity.

Ends up… I was correct; I had been misdiagnosed. What was actually wrong with me was that genetically, I don't properly-metabolize most medications, and the medications my doctors at home had been prescribing me for the previous 12 years were slowly building up in my system and were slowly killing me. I stopped taking these medications, and most of the symptoms have completely disappeared.

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@kdubois

@wdd18054 have you have any pharmacogenomics testing done?

I was sick for 12 years with wonky hormone levels, especially GH and IGF-1, and I had a ton of endocrine symptoms (profuse sweating, facial flushing, weight gain, and more). My home medical center diagnosed me with a rare endocrine condition and treated me for it, but I kept getting sicker. Sensing they had misdiagnosed me, I did a lot of online research and then took myself to Mayo and asked them to test me for drug hypersensitivity.

Ends up… I was correct; I had been misdiagnosed. What was actually wrong with me was that genetically, I don't properly-metabolize most medications, and the medications my doctors at home had been prescribing me for the previous 12 years were slowly building up in my system and were slowly killing me. I stopped taking these medications, and most of the symptoms have completely disappeared.

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@kdubois Just think of how beneficial the internet has been for us! Prior to having access to so much information you would never have figured out what was wrong.
My mother was very bright and my sister and I have often commented how she would have loved the internet. She would have known virtually everything!
JK

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