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Q for Dr Sam-diagnosed now undiagnosed...sorry, long.From: Helena (anonymous@obgyn.net)Thu, 16 May 2002 15:27:12 -0500 (CDT)
Dear Dr Sam, I was diagnosed with incomplete PCOS when I was 17, I had stopped menstruating at 17 after three years of irregular menses. The hormone workup at age 17 was FSH 4,9, and the LH was 9,31, which was considered to be in the limits of "normal". My free testosterone was a bit elevated at 5,4 pg/ml, but my estradiol was normal and so was the progesterone, prolactine, androstenedione and DHEA levels. I didn`t have a serious case of hirsutism or acne, and I had put on weight in the middle of my body, but was more due to a change in patterns of eating due to a stay and an exchange student abroad than anything else. I was put on Diane, which I started taking when I was 19, and took until I was 24. At 24, bothered with the side effects of Diane (massive weight gain and mood swings) I stopped taking it on january 2000 (my new year´s resolution was to have a period "by myself", ha!) and stayed nine months without a period. On March 2001, the blood tests came as following: Estradiol 40.3 Free Testosterone 2.95 Progesterone 0.49 FSH 5.31 LH 6.4 Prolactine 11.8 I was told that I had "postpill amenhorrea" and that it was normal for a woman to be a certain lenght of time without a period. Nonetheless, I had bad acne for about six months, which receeded after oral antibiotic therapy for six months (when I asked the doctor why I had acne if I didn`t have PCOS, he just responded that "this sort of thing jus happens..."). After that, finally in october 2001, after eight months of amenorrhea I was put on femodette (20mcg estradiol and 75 of gestodene OC), since I was in need of contraception. However, after I stopped this OC in september last year (2001) I was again with no period for three months. DEcember 2001 I went to the doctor again, this time in Brazil and was done a comprehensive battery of tests, including a 75g GTT which came back normal (78.00 fasting level, 107.00 after 120 minutes). The insulin was also tested (2.00 fasting, 13.60 after 120 min), so I wasn`t considered to be IR. They also checked my FSH (8.55), LH (12.83), progesterone (0.91), estradiol (<5.0), free testosterone (0.81), total testosterone (25.00), Dehidropiandrosterone- Sulfate (0.90), Free Tiroxine (1018), TSH (1072), Prolactine (19.80), androstenedione (2.50) and DHEA (8.40). They also did an ultrasound which came back with normal ovaries and a small womb (15.9 cm3), which was thought as being hormonally hypoestymulated. Both the gynecologist and endocrinologist in Brazil undiagnosed me again of PCOS, but both agreed that it was not a simple case of post pill amenorrhea, and that there was more tests to be done. After that, I was put of Lutenyl (I think it is nomegestrel) for 7 days, and in spite of my alleged estrogen levels, I bled for four days ten days after I stopped taking the Lutenyl. After that bleeding, I was put on femodette again for a month (21 days), cos I needed it for contraceptive purposes. So I got a karyotype done, which came back normal, and a GnRH test (which I got done 2 months after the withdrawal bleeding from the OC, and after that withdrawal bleeding again no periods). The values of the GnRH test are as following: FSH 0': 5.39 FSH 30' after GnRH: 11.3 FSH 60' after GnRH: 12.2 FSH 90' after GnRH: 11.1 LH 0': 2.09 LH 30' after GnRH: 21.1 LH 60' ": 17.7 LH 90' ": 15.1 I was also checked the prolactine levels again (3.78), DHEA (7.98), progesterone (0.48) and estradiol (19.3). The doctors didn`t know what I had, and I was left with the "we don`t know why you are not menstruating" syndrome. By this time, the acne had come back with revenge. Eight days after the GnRH test was performed, I got the FSH levels measured (4.60) and estradiol (46.0) by mistake, cos I was getting another blood test to check cholesterol levels and all that routine things and the girl at the lab got confused with my former test requests and added those two to this one. Now I was told that I won`t be able to conceive due to not only my hormone levels, but also the size of my womb and endometrium, and that they still have no clue why I am not having a period. I was told to go back on Diane if I wanted clear skin (which was no option due to bad side effects) or just live with the acne and take a birth control pill if I developed low estrogen symptoms (hot flushes, dry skin, lack of vaginal lubrication, etc which, up to today, haven`t developed) I am interested in knowing your opinion on this case, whether this could be a case of post pill amenorrhea (even though they told me about 2000 times that it wasn`t) and if there is any possibility that I might be able to conceive in the future. Also, why the acne? (I guess this is part of the self-pitying why me questions?) Sorry that this message is so long, but I am really dissoriented as to what to do and believe. Thank you very much for your time and consideration Regards Helena
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