We drove 4 hours to see a reproductive endocrinologist who came highly recommended. He is a very nice man, but the visit wasn't very satisfying. Just before the visit we had received word that my daughter's DNA testing for common mutations was negative. I had googled the dr and saw that all his research is in the area of PCOS, and with a negative diagnosis of LOCAH, I expected to be told that she has PCOS (in spite of the fact that she has no typical signs of it). But since this dr is an expert in androgen excess disorders, I expected some insight as to why she doesn't fit the pattern or maybe some other explanation for her high testosterone that I don't know about.In fact, he didn't diagnose her with PCOS, though he said PCOS is a possibility, because to do so he would have to take her off her meds for testing (this testing was already done before she went on pred and Yasmin, which he should have seen in the records I brought). He said that she's already seen too many drs and had too many tests done (I agree; if anyone had been able to give us an explanation for her problems, we wouldn't be doing this). It became apparent that he thought I was an overbearing mother who is dragging her daughter from dr to dr for no good reason.
He said he WAS concerned about the 10 pounds that she lost in a year (from 105 to 95 lbs) and asked her several times if she is bulemic (she thought he was an idiot) and suggested that she get a psychiatric evaluation! First he said that her need to sleep 11-12 hours a day is normal, then he wondered if her fatigue is a symptom of depression. Every abnormal lab result that I asked about he dismissed (high ACTH, high sodium in urine, high 17 ohp, high progesterone, low BP) and said that I was paying too much attention to the fluctuations in lab results.
The end result is that he suggested she see a rheumatologist for her chronic hives, get a psychiatric evaluation, and continue on Yasmim for high testosterone. He also wants her to have a glucose tolerance test. He sees no need for her to be on prednisone and Florinef (which she was on mainly for fatigue and orthostatic hypotension). So she will have to go off of those (the kicker was that he said that since she's on a low dose of pred (2.5 mgs for 2 yrs), she will not have to wean down!) and we will just have to see how she does.
Currently she is doing better than a year ago. She is gaining some weight back by making an effort to do so (drinking whole milk, for example), and with her schedule in college, she is able to sleep late most days, so she is less sleep deprived than in high school when she had to get up at 6 AM. She seems to have more energy than last year, but maybe that's just because she's getting more sleep. Her BP is good (even on pred and Florinef it is 113/58. The bottom no. is consistently in the 50's). She continues to have hives on a daily basis, even with taking pred and lots of antihistamines, but she can live with that. So I really hesitate to mess with what seems to be working, but the allergist will not prescribe the steroids anymore because he wants her care to be taken over by an endocrinologist, and no endocrinologist thinks she has an endocrine problem.
So say a prayer and wish us luck! I will keep you posted.
