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Cushings Disease - What were your cortisol and ACTH test results?
Diabetes & Endocrine System | Last Active: May 29 4:16pm | Replies (16)Comment receiving replies
@monarchbfly @j77
Welcome to Connect!
It’s frightening to read what you two are going through.
My daughter was diagnosed with Cushing’s at age 27.
She had been sick for a few years, putting on massive weight, developed tachycardia, bipolar depression, diabetes and several bacterial infections.
She saw several doctors- endocrinologist, cardiologist and internist. They just saw her as another obese woman. The endocrinologist would yell at her for being fat.
The psychiatrist diagnosed her!
He saw the hump on her upper back. At that point we started looking for a good endocrinologist. I found one associated with a major university hospital who immediately knew how to test her and referred her to another university hospital with a dedicated pituitary team.
She had a pituitary adenoma removed and luckily no recurrence.
There are some Cushing’s that come and go as to symptoms.
Many patients need repeated cortisol testing for that reason.
My advice is to find the best possible university medical center known for there pituitary endocrinologists. Same goes for surgery. Not every neurosurgeon can do this surgery. If surgery is not done by an expert there is a greater risk of recurrence and bad outcomes.
Stay in touch and advocate for yourselves. Keep pushing.
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Thankyou so much for responding!That makes me so mad that your daughter had to go through that.She was so ill and the Doctors were dismissing her.It seems like alot of specialists you would not expect to figure it out are the ones that do.I am glad she is doing better.I am in the same boat right now going from Doctor to Doctor with no answers.The Neurologists and Endricinologist I met with were thinking Cushings so I took the Dexamethasone test.I just got the results back and my Cortisol and ACTH1 were not high,but marked as extremely low.My cortisol was 0.2 and my ACTH1 was 1.I know that the Dexamethasone can lower it,but that seems extremely low.I don't understand what this is I have.I thought with the extreme weight gain,muscle weakness and other unusual symptoms Cushings was involved.My Glucose on regular tests was average,but can be a little high sometimes.I had really low DEHA sulfate and low carbon dioxide in my blood and my TSH was a little off.We raised my synthroid level.I know that whatever this is I have is way more than thyroid issues.I know it is involved,but there is way too much going on.