Multiple abnormal hormone levels - Could it be autoimmune related?

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 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.

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.

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.

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?