Cushing's Syndrome Support Group

Hi David,

I had/have Cushing's disease from a pituitary tumor so my experience is slightly different. The urine test is most likely the 24 hour urine free cortisol (UFC) where you collect urine for a 24 hour period to determine how much cortisol you produce. I just had a pituitary adenoma removed that was causing me to have Cushing's disease. The only plasma cortisol test I had was to measure my 8am cortisol after taking dexamethasone the night before. Your cortisol is supposed to be highest at 8am but should be suppressed by the dexamethasone. Mine was not indicating that I had the tumor. For an adrenal adenoma, there might be different tests. I was actually glad when they found my tumor because I was really thinking I was going crazy with just one thing after another going on with my health. It started as small things but when my blood pressure got to 160/110 and I gained 60 lbs in 3 months, I knew something was really wrong.

I had the tumor removed 4 weeks ago and for me the surgery itself was almost trivial. The worst besides just being in the hospital was a sinus headache. I am going through cortisol withdrawal which causes me to get very tired and my joints to hurt but I know that is temporary. Some people post that they take months to feel OK or to go back to work but I was back in 2 weeks. Some mornings I don't feel like getting out of bed, but I also had insomnia for over a year and am very sleep deprived as well.

I have not gotten rid of all of my symptoms yet but my cortisol is still higher than normal because I have to take supplements because right now I make no cortisol and they want to slowly reduce my cortisol to a normal level. I have been able to stop my thyroid medicine and my wellbutrin (agitation and stress). My blood pressure is now down to 90/60 and I'll see if my hyperinsulinemia is gone next week. I was having severe memory problems which are quite a bit better and my skin has gotten noticeably more elastic an thicker. My face is thinner and I think that about 8 lbs have come off but I'll give it a few more days before I get excited in case it comes back.
Good Luck!
Angela

Hi Angela,
Thank you for taking the time to help me.Glad you are on the mend now.

Regards,

Dave.

I'm happy to help in any way that I can. I also forgot to give you this link: www.cushings-help.com. They have a lot of good information. I will caution you that I think many of the postings are from people who have had a lot of problems and not necessarily the typical patient.

I took some concerns (after reading postings) to my surgeon and he said that a lot of the things I read about were serious, but also very uncommon. Many had problems with their cortisol getting too low, requiring a visit to the ER. I don't understand how that would happen if you take the prescribed amount of supplement, but this type of incident seems to have happened to many of the posters.

Angela

David,

I am at the same place as you right now. I have a journal entry on my page, so if it helps you can read it. I'm spending this beautiful Monday at home, inside today because I'm doing the urine test today. Tomorrow I drop it off and get blood drawn for about 6 tests. Let me know how your progress goes we can compare. I hope that you find the answers that you're looking for!

Wendi