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wdd18054
@wdd18054

Posts: 16
Joined: Jan 26, 2017

Multiple abnormal endocrine hormones

Posted by @wdd18054, Jan 25, 2017

Hello,
I have been on a journey for many years looking for answers. I found this website and hoping someone may have some suggestions.
Issue # 1
• Low PTH level with normal Calcium level.
o Discovered in 2008 prior to a total thyroidectomy which was done due to nodules in 3 of the 4 lobes that were large enough to cause issues with swallowing.
o I have not been able to find information on causes of low PTH with a normal calcium, and one of my endocrinologist was at a loss as well.

Issue # 2
• Elevated ACTH with elevated Urinary Free Cortisol and salivary cortisol.
o This has been investigated at two of the top healthcare organizations in the country and no reason has been found, after many different tests like MRI, CT, PET scan, octreotide scan, Dexamethasone suppression test, etc.
o This has been elevated since 2012.
o Both doctors at these organizations have told me they had not ever seen anything like this before. The missing part of the puzzle in order to be able to diagnosis me with Cushing’s is to find a tumor, however no one has been able to find a tumor or determine the source of why these have been elevated.

Issue # 3
• Developed hypoglycemia problems.
o This started end of 2015 where blood glucose all the sudden drops, sometimes in the 20’s.
o This has been investigated from review of diet issues, to a gastric emptying study, to a glucose tolerance test (2hour glucose was low at 64), insulin levels, etc.
o Currently again as with the above two issues no explanation as to the cause. I have been a Type 2 Diabetic since 2008, but diet controlled for the last 4 years, with last A1C of 5.0.

Issue # 4
• Elevated testosterone, and SBHG.
o This has been elevated off and on since 2012, which was one of the things that lead to finding out about the ACTH and cortisol levels.
o At last check in November this was high again. The total testosterone was almost 1500, which is 160% of the highest allowed at the lab, and the SBHG was over 600.

I have been scanned in so many different ways but so far the doctors have not been able to find a tumor or other reason for all of these different abnormality’s.
It seems to me that the control functions and/or feedback mechanisms in my endocrine system are having all sorts of issues with keeping my hormones regulated.
I have been on Synthroid since 2008 following my thyroidectomy with my TSH levels being evaluated regularly and it has been stable throughout all this.
My self-education over the years leads me to believe that the issues have to do with my hypothalamus and/or pituitary. My reasoning is because almost all of these hormones can be traced back to these two glands in their feedback loop. It makes more sense to me that the problem would be maybe with just one of these glands instead of all the other target glands.

Has anyone out there ever seen or heard of any disorders that would help explain the above?
Thanks

REPLY

Welcome to Connect @wdd18054.
Thank you very much for sharing your concerns.

I’d like to connect you with fellow members @gailfaith @jenchaney727 @dogmamat @whiterose67 @jennybell @dd44all @ahtaylor @ahtaylor @cindi819 @jasonkwellls @johnwburns and @neffjsn, who have talked about a total thyroidectomy ACTH with Cortisol hypoglycemia or testosterone problems. They may have some experience and solutions to share with you.

Have you talked about your condition with your doctor?

@hironopiro

Welcome to Connect @wdd18054.
Thank you very much for sharing your concerns.

I’d like to connect you with fellow members @gailfaith @jenchaney727 @dogmamat @whiterose67 @jennybell @dd44all @ahtaylor @ahtaylor @cindi819 @jasonkwellls @johnwburns and @neffjsn, who have talked about a total thyroidectomy ACTH with Cortisol hypoglycemia or testosterone problems. They may have some experience and solutions to share with you.

Have you talked about your condition with your doctor?

Jump to this post

from @gailfaith. Sorry but I had a parathyroidectomy in June, 2016 at Mayo in Minnesota. Best wishes and hopefully someone else mentioned can tell you about their experiences.

@hironopiro

Welcome to Connect @wdd18054.
Thank you very much for sharing your concerns.

I’d like to connect you with fellow members @gailfaith @jenchaney727 @dogmamat @whiterose67 @jennybell @dd44all @ahtaylor @ahtaylor @cindi819 @jasonkwellls @johnwburns and @neffjsn, who have talked about a total thyroidectomy ACTH with Cortisol hypoglycemia or testosterone problems. They may have some experience and solutions to share with you.

Have you talked about your condition with your doctor?

Jump to this post

Thank You for sharing my post. Yes I have seen multiple doctors over the years.

Hi, @wdd18054 — if you are okay sharing, just wondering if you were able to glean any insights and direction for your symptoms from the results from the genetics doctor?

@lisalucier

Hi, @wdd18054 — if you are okay sharing, just wondering if you were able to glean any insights and direction for your symptoms from the results from the genetics doctor?

Jump to this post

The genetic test came back OK, so to answer your question, no the genetic test didn't help other than make it less likely that my problem is genetically related. I am really not sure where to go from here.

Hi, @wdd18054 — Sounds good that now you know a genetic component was deemed less likely for your condition with multiple abnormal endocrine hormones, but hard to know where to turn next. We had a similar situation with our son, who had a totally different condition from birth, a tethered spinal cord. We were sent to genetic medicine, and they deemed the spinal cord situation to not have a genetic component.

A few other members who may have some thoughts on your situation overall (described in more detail at the top of this discussion, https://mayocl.in/2LZ0Biv) — or with regard to the Parathyroid Hormone Blood Test (PTH) revealing low PTH level with normal calcium level in particular — are @gman007 @hopeful33250 @dazlin @redhead63 @myqbrook @2011panc @ujeeniack and @mollyb1968. Hoping they also may have some ideas for where to go from here.

@wdd18054 — you'd mentioned over a year ago that your self-education over the years led you to believe that the issues have to do with your hypothalamus and/or pituitary. Are you still thinking these are the most likely causes of the issues you've been dealing with?

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