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wdd18054
@wdd18054

Posts: 16
Joined: Jan 26, 2017

Multiple abnormal hormone levels - Could it be autoimmune related?

Posted by @wdd18054, Wed, Feb 21 4:43pm

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.

REPLY

Hello @wdd18054 ,
I'm not sure if this is helpful but I did a search on Google Scholar (https://scholar.google.com/) using the phrase multiple abnormal hormone levels and came up with quite a few interesting research articles. I sorted the links by clicking 2018 at the left to get the most current ones first and here are the search results:
https://scholar.google.com/scholar?as_ylo=2018&q=multiple+abnormal+hormone+levels&hl=en&as_sdt=0,24

The first link was one that I thought might apply but I'm not sure.

The influence of elevated hormone levels on physiologic accumulation of 68Ga-DOTATOC
https://link.springer.com/article/10.1007/s12149-018-1233-4

Hope this helps.

John

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?

Just curious — have you had any imaging studies?

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.

Hello @wdd18054

I appreciate your post. I am Teresa and a volunteer mentor with Connect. I have had surgeries for three neuroendocrine tumors and have had many of the same problems that you have mentioned, especially the thyroid nodules, parathyroid hormone levels up and down, calcium levels up and down. As you mentioned the possibility of neuroendocrine tumors (NETs) I was wondering if you have had tests specifically designed to find them. You can find a list of the lab tests at this website, http://www.carcinoid.com/health-care-professional/carcinoid-biochemical-testing.jsp?usertrack.filter_applied=true&NovaId=2935377093787610706. Have you had any of these lab tests?

NETs very seldom shows up on traditional CT scans, MRIs or X-rays (unless of course there is metastasis to the liver or pancreas). As NETs tend to be found mostly in the GI tract, endoscopies are the way they are usually found. Have you had an upper endoscopy or colonoscopy? What type of symptoms have you had with these problems?

I look forward to hearing from you again.

Teresa

@johnbishop

Hello @wdd18054 ,
I'm not sure if this is helpful but I did a search on Google Scholar (https://scholar.google.com/) using the phrase multiple abnormal hormone levels and came up with quite a few interesting research articles. I sorted the links by clicking 2018 at the left to get the most current ones first and here are the search results:
https://scholar.google.com/scholar?as_ylo=2018&q=multiple+abnormal+hormone+levels&hl=en&as_sdt=0,24

The first link was one that I thought might apply but I'm not sure.

The influence of elevated hormone levels on physiologic accumulation of 68Ga-DOTATOC
https://link.springer.com/article/10.1007/s12149-018-1233-4

Hope this helps.

John

Jump to this post

@johnbishop Thank you, I reviewed this information and while I am not sure it is what is going on, it does give me a new area to look at. Thanks again for the information.

@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?

Jump to this post

The symptoms vary and seem to come and go. A few that that have managed to come and go for years, are fatigue, I go thru periods where I wake up around the 3 or 4 am timeframe and can not go back to sleep for about an hour or two. (presumably this is when my cortisol is running high), Headaches, loss of peripheral vision in my right eye, dizziness, severe orthostatic hypotension, fluctuation in weight, Hypoglycemic episodes (requiring me to carry glucagon). There are many, many others but as I can researched that all seem to vary depending on what hormone may be high or low at any given time.

Thanks for tagging people you think may have some input.

@jigglejaws94

Just curious — have you had any imaging studies?

Jump to this post

Yes, to the point I am surprised I don't glow. 🙂 I have had multiple Pituitary MRI's, PET scan, Octerotide scan, Nuclear Med scan on thyroid, Ultrasound of pancreas, CT scan of adrenals, and probably a few I have forgot about. Almost all of them show some sort of abnormally, but the reading radiologist always states it is nothing that would apply to the systems I am having or anything to worry about.

@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.

Jump to this post

I was followed by a endocrinologist in the pituitary area at Mayo in MN from 2012 till he retired in 2015 (after being at Mayo over 40 years) My experience working with him was wonderful. His approach was I am not sure what is going on with me, but we will keep track of your symptoms and test as needed, and this will show its self at some point.

However, when he retired my experience has been less than satisfactory from the pituitary area of the endocrinology department.

Even with that being said I would still encourage anyone who has not been there and feels they need to go, to please go because if you are to the point you feel you need to go to Mayo, it will probably be of some help.

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?

@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.

Jump to this post

Thanks, appreciate the response. If you do not mind, how much did it cost you to attend Mayo Clinic? Thing is I am 24 years old and my health insurance although PPO, is out of network at Mayo. The insurance carrier is known to be stingy with out of network providers, so I think it would basically be self-insured for me (unless I find employment opportunities at Mayo).

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

@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?

Jump to this post

Hello again @wdd1805

I'm wondering if you have had any problems with flushing, diarrhea (which are symptomatic of carcinoid syndrome)? How have your doctors approached hypoglycemic episodes? Any close up look at the pancreas, such as an EUS?

Teresa

I am supposed to have another upper endoscopy. Even though it takes only about 15 minutes I want to be out. i kept putting it off because it seems lie every time they check something they find something. just had one about a yr ago.

@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.

Liked by jigglejaws94

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