Tuesday, December 2, 2008

Fatima, adrenal bio

Hi. I am an African American female, 45 years old. I don’t have Cushings syndrome, but I do have high cortisol, and I think some kind of adrenal disorder, even though many doctors have told me this is not the case. I think my problems stem from high cortisol.

I started going down hill in April of 06. My problem is that I’m stuck in this horrible limbo place. I don’t have full blown Cushings, but have high cortisol and have the severe symptoms of it. My various levels are only slightly elevated, according to doctors, but I’m having horrible symptoms, and they’re getting worse daily. I can barely function most days. Most of the doctors I’ve seen in the past 2 years totally dismiss my high cortisol levels as well as my test results.

In April 2006 I started getting strange symptoms. Very dizzy and unsteady for no apparent reason. I am hypothyroid after having RAI ten years ago for an overactive thyroid and goiter. I was having trouble regulating my medicine, Synthroid. The first endo of many that I saw at the time said my thyroid was fine, but that I had low iron and was anemic. She sent me to a hematologist, who told me to take over the counter iron, but otherwise I was fine. My iron kept getting lower, so I had an iron transfusion and was told I was cured of anemia. Meanwhile, my symptoms started getting stranger and worse. My symptoms are described below. Here I am, two years later in December 2008. No doctor has helped me and almost all of them dismissed my symptoms and pain. There was one doctor I saw around January of this year. She thought my symptoms might have been adrenal related. She gave me the saliva test and was concerned by the high cortisol levels. She pointed me in the right direction, but she couldn’t help me further and suggested I see an endo for further treatment.

I am considering seeing a Naturopath doctor, because I heard they are more helpful in treating adrenal disorders, but I’m afraid they won’t be much help, like all the other doctors I’ve seen. I can’t count the number of endos I’ve gone through, though I think I’ve seen at least 4. The last one was a top specialist in his field at John’s Hopkins. That left me very depressed and feeling worse. He totally dismissed my symptoms and lab results, saying they are not adrenal related at all. I’m really running out of options for treatment. I’ve been to the ER about 20 times over the past two years, and everything comes out ‘normal’, except for my blood pressure. My GP thinks something is amiss with my labs, but she says she can’t put her finger on it. She recommended the endo in her office, but this doctor was totally useless. My GP is the only doctor who seems concerned about my urine tests. I’m hoping to get my saliva and urine checked regularly. I also hope to get another cat scan, this time with contrast so maybe it will be more accurate. I also have an appointment with a rheumatologist, to rule out any of those problems, though I don’t think my muscle pain is coming from that. Meanwhile, I know I’ll end up in the ER again soon, which I dread because they’re going to tell me nothing’s wrong, even though I’m in agony daily.

Any advice I can get as to what I should do next would be greatly appreciated. Has anyone been actually treated for just high cortisol, but not full blown Cushings? I’ve had several blood cortisol tests, but they’ve all come back within range, which is why doctors say I don’t have Cushings.

Does anybody have horrible symptoms with just high cortisol? I’ve heard and read that the long term effects of high cortisol can be very damaging, but none of the doctors I’ve seen seem to think it’s a problem. I really need help bad, and I’m running out of options fast.

Also, where on the website do you find doctors in your area that can help? I would see another endo if they would actually take my symptoms seriously and treat me for them. Right now I’m sticking with my GP and I’m going to make an appointment with a naturopath clinic in my area. Sorry this post is so long, but I’m so frustrated and need to talk to people who are going through something similar. Like I said, I don’t think I have Cushings but have some of the symptoms of people who do.

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