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Addison's Disease Message Board

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Re: ACTH question
May 1, 2006
I first became ill 1998 but by 2000 my adrenals were beginning to show extremely low. I had difficulty getting anyone to test because they kept blowing me off as depression (the fatigue was so severe) I was falling asleep at the drop of a hat. My cortisol numbers were less than 1. The doctor put me on cortisol but I didn't think it was helping because my pituitary wasn't putting out the ACTH either. So I had both endocrine glands become deficient which is unusual I'm told.
I finally convinced a doctor to prescribe ACTH injections that I gave myself at home. This stimulated the pituitary which instructed the adrenal to put out cortisol. It did bring my ACTH and Cortisol levels up somewhat, but it took a lot of ACTH to get minimal reaction from the adrenals. It worked for a couple of years when I could no longer find a doctor willing to prescribe the ACTH. See, acth is a natural compound that pharmaceutical companies can't patent, so doctor will push the Cortisol pills as I believe doctor's are really just pharmaceutical dispensing stations. It became impossible to get any doctor to take on my case to find out why both endocrine glands were shot.
Long story short, I have an immune deficiency called hypogammaglobulemnia which is low IgG so I am always getting an infection. About six months ago I finally started receiving treatment for this with IV infusions of gamma globulin. My endocrine glands have now started to function again after two years on cortisol, which is almost a miracle in itself.
The real shame is that it took dozens upon dozens of doctor appointments and seven years of wasted consultations to final get someone to help me.
If you are low normal already on the cortef, you need to watch it. Also you must have two blood tests taken, one in the morning one in the afternoon.
My son is also 22 and has the same problems, but since he is younger he is not quite as severe as I am. I also have central sleep apnea which is rare form of apnea where there are lesions on the brainstem that forget to tell me to breathe,so I stop breathing 1200 times a night.

Have you had a sleep study done. The sleep stages you are able to gain could also be a factor in endocrine disorders. I never get out of stage two sleep therefore I am not able to restore what I use up during the day. It used to take me sleeping three days to build up enough cortisol to just walk outside.
The main problem is that doctors today simply won't go the extra mile to look for the cause. They say they are symptom management and if you need to know why you have this disease, then you have to look elsewhere. They are all too eager to steriod you up with little responsibility. Believe me, you don't want to be tied to cortisol .It will take a good ten years off your life.
Also a symptom of adrenal insuffiency is a tremendous heightened sense of smell(drove me mad) and hypoglycemic reactions at the drop of a hat.
I will check back to see if you have more questions, but I'm tired already.
Good luck

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