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Addison's Disease Message Board

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Not sure where to even start this. I have been a very healthy person until about 5 years ago. I have PCOS and had a lot of trouble getting pregnant I ended up with pre-eclampsica and went into the HELLP syndrome. After this it has seemed like I have had something wrong with me all the time. I should be on the show House cause know one knows what it is. I have had a Spontaneous pneumomediastinum which no one could ever explain then for over a year after that I had problems with shortness of breath just feeling like I was smothering I could not breath in deep enough to yawn is the best way to describe it and my heart just racing. An electrophysiology finally figured out that I had autonomic dysfunction. Which we thought was wonderful everyone could stop telling me I was having anxitey attacks. He put me on Florinef and Nadolol. For the most part I have done well with only every now & then feeling the shortness of breath. If that occured he instructed me to take an extra dose of the Florinef and it has always seemed to help till now. I got really sick and husband took me to the ER once admitted they did blood work and here are the results

Cortisol (08/07 @ 0620) - 0.6 L
ACTH (@1830) 12.6
ACTH (@1905) 12.4
ACTH (@1946) 7.3
Cortisol/ACTH Stimulating Panel (@ 1830)
Cortisol-Baseline- 2.09
Cortisol-30min- 14.97
Cortisol-1Hr- 20.06
T4 Free-1.02
TSH- 4.12
Potassium & Platelets are always low

I am sorry this is so long and if you read the whole thing. THANK YOU!:) This is very hard on us not knowing. I am an RN and my husband is a Firefighter/Paramedic so we do have medical background but we still have no idea what in the world is going on & now they are sending me to another Dr. I'm starting to get scared. We have 2 small children & I want to be around to watch them grow up. Thanks again everyone
Hello there, this is amazing its like reading my story PCOS, shortness of breath, etc...... and additional.....diagnosis was panic attacks blah blah blah.

It took having my PTH, potassium, and magnesium dropping every few days and having to get IV replacement to get anyone to listen. The first endocronologist told me and my pcp that this was not an endocronology issue. My pcp immediately sent me to another endocronologist who tested my cortisol which was <3. ACTH was not detectable and my calcium was 13.6 too high.

The first thing my new endo asked me was did I have PCOS and I answered yes, she then asked if I had any thyroid issues, mine is gone I had a benign herthle (sic) cell neoplasm but they removed the entire thyroid. She went on to list my life history without me even having to tell her.

After having the same tests done on me that have been done on you, i.e.; all the same blood work including the cortysn stimulation test I was given an insulin tolerance test. BTW the results were bizzarre and not what the doctor expected.

Basically the cortysn stimulation test checked to see if the adrenals are working. As I understand it if the cortisol doubles the adrenals are not the problem so they move up the chain to the pituatary with an insulin tolerance test which looks for acth. If there is ACTH production then they move up to the hypothalamus. From what I'm understanding the majority of cases end with the pituatary being the issue for several reasons including benign adenomas, hormone producing adenomas, and steriod destruction of the pituatary which can be reversed if caught early enough this is called hypophysitis.

If it is not the pituatary ACTH will be produced when hypoglycemia is brought on through the insulin tolerance test. I have ACTH but it does not bind for some reason which means it is the connection between the hypothalamus and pituatary.

There is treatment and I am feeling better.

This is my current understanding from the doctor and additional research, although I have yet to find anything that talks about my specific condition other than that they know the connection is CRF from the hypothalamus which tells the pituatary to produce ACTH.

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