Funny you should ask, lol! We just had a follow up yesterday, which was basically a waste of time. Like I said before, her Sex Hormone Binding Globulin (SHBG) was really high, 243 (normal is up to 75), which is probably due to Yasmin. So he is taking her off Yasmin for 3 months in order to retest and see if her baseline level of SHBG is also high, or if it will be normal off the Yasmin. He thinks her high level of SHBG explains all her hormonal imbalances because they are being bound up. Her testosterone levels were low, which is what's supposed to happen when you take pred and Yasmin. I've already noticed my daughter having more acne since stopping Yasmin, so the SHBG must be going down and testosterone going up. Her estradiol, FSH, and LH were also low, but progesterone was high. I'm going by the reference ranges for follicular phase, which I believe would be equivalent to being on BCP, since she doesn't ovulate.
Then there was the high cortisol (32--higher than it went on the stim test!) and aldosterone (88), which he didn't really have an explanation for (I'm pretty sure that was a rebound effect of suddenly stopping her pred for a day, since she has chronic hives). But because of those high levels, he's sure that she does not have an adrenal problem. He did a follow up 24 hr urine to check aldosterone (while she was back on pred), which was normal. But because of the stress reaction when the other tests were done, plus the fact that she was on Yasmin, it's really hard to interpret her other results, but I'll share them to see if anyone has any thoughts.
Her sodium and osmolality were low; potassium was normal. 17 OHP was 184, which seems pretty high to me considering she was on Yasmin and had been on pred (but only 2-2.5 mg) for over a year. But I'm wondering if these results should be interpreted like a stim test; since her cortisol was high, should her 17 OHP have been higher if she has LOCAH? Her ACTH was 24, right in the middle of the range, but with the high cortisol, why wasn't it really low? Androstenedione was 154 (normal 55-200), DHEAS was 126. He also checked Vitamin D, 25-hydroxy, which was low. He said all these abnormal results were not high or low enough for him to be concerned.
Even on 2.5 mgs of pred, her BP is running something like 105/70. Shortly after she first started on it (she started at 5 mgs and weaned down), her BP was 120/80 for the first time ever. She has been losing weight; a year ago she weighed 105, yesterday, 96! And she is so tired! Really hard for her to keep up with school. I really think she needs a higher dose of steroids, but no one will prescribe it.
I told him that I won't be satisfied until the LOCAH question is laid to rest and so he agreed to order genetic testing, which we will pay for since he says it is not medically necessary. He really knows nothing about LOCAH, so I'm sorry I even went to him. He's fresh out of residency, so I thought he'd be up on all the latest! Oh, and now no one is willing to prescribe the pred for her. The allergist who prescribed it (because I convinced him to) wanted the endo to take it over. We have a follow up with the allergist soon, so wish me luck! He's the only one who seems to see what's going on and is concerned.
Whew! Thanks for inquiring and letting me vent!
