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?