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Update - I've been misdiagnosed with PCOS - I have something else.From: Anna (anonymous@obgyn.net)Fri, 6 Jul 2001 20:43:53 -0500 (CDT)
I've been on 2000mg glucophage for 4 months now. I was diagnosed based on a negative urine cortisol test and a LH:FSH greater than 2:1. At my 3 month check-up, my stretch marks have grown. I've developed severe mood swings, depression to rage. Another 24-hr urine test is negative. My LH:FSH is the same. My testosterone has risen. I found out last week that Quest Diagnostics in Denver has been grossly mishandling my labs. My 24-hr urine test didn't have preservatives in the container and I don't think they kept it cold the whole time. One sample was left in the doctors office for 3 days. I have paid a hosptial lab to do the test again. This time with 10mg boric acid in the container the whole time. The lab stored it on dry ice, then FedExed it on dry ice to the Mayo Clinic for the actual test. I should get it back by Monday or Tuesday. My doctor was shocked that the lab had been handling my labs like that. She had no idea. From now on, all my labs will be done at the University of Colorado Hospital labs. They do their own testing in-house. She is convinced that the PCOS diagnosis is wrong, that based on the symptoms, I have Cushings disease. There are variations of Cushings that are mild, they don't show up on tradational tests. So if this latest test is not positive, we're doing more. We've already found a pituitary tumor and next week I'm getting a CT scan of my adrenals. I am so frustrated that I had to be the one to figure this out. The PCOS diagnosis never made sense to me. I'm not obese, in fact, my BMI is 25.1. barely overweight. I don't have facial hair, skin tags, discolored skin. And last year, when I had my right ovary removed for endometriosis, my OB/GYN took a close look at the remaining ovary. It was fine - not white, oversized and smooth like the literature says PCOS ovaries are. My periods have always been regular, only until the past year or so. There is no family history of PCOS. I don't blame my doctor, the PCOS diagnosis was the logical choice. She didn't know that she had to micromanage the commercial lab. If any of you think you might have Cushings, email me and I'll send you a Lancet journal article from March 2001. It details the difficulity in making a Cushings diagnosis and the new tests to use. Give it to your doctor to read. Also go to the labcorp web site, it tells you how all the labs should be handled. Ask your lab tech how they handle theirs. I am really angry that I wasted all this time and had to deal with Glucophage. In the first month, I was on regular glucophage and could barely eat. The Glucophage XR is a godsend. Thank God I'm a pre-med student and have written medical databases for physicans. I can read these journal articles and totally understand the research. What if I hadn't had the growning stretch marks? Even I would have been convinced that I had PCOS. I don't want all of you to start doubting your diagnosis. If you have doubts, read Dr. Sam Thatcher's PCOS book and make sure you've had all those tests done and you have the classic PCOS symptoms. If your doctor won't read the literature or run tests, go find another doc. We should never have to wonder if we've been correctly diagnosed. Emotionally, this has been hell for me. I almost killed myself when the severe mood swings started. Thankfully, my doc got me on some anti-depressant and low dose ritalin, and I've got my mind back. I've read it's very common for Cushing's patients to kill themselves because it takes so long to get diagnosed. Many are never taken seriously by doctors, "You're just fat, loose weight". Some jerk told me that early on. There is a great internet forum: http://www.cushings-support.com/cgi-bin/ikonboard/ikonboard.cgi It's primarily Cushings, but it also is a support group for anyone with endocrine disorders. They have a PCOS forum as well, although not as large as this one. It's entirely patient run, no docs visit. Just thought I would let all of you know what's going on. Many of you have been such a blessing to me when I was suffering so much. I got some great emotional support as well as technical info. I really think that patients are the experts on living with these diseases.
-- Anna kai@killerbytes.com
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