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[RGMCjim]

It has long been thought that my intersex was caused by fetal exposure to progestin, but I'm a little concerned that it might be CAH too.
For one thing, I never started female puberty. According to the literature progestin induced intersexed people do - although I suspect the literature to be wrong. I've heard from several of us who don't have completely formed uteruses or ovaries and therefore didn't start female puberty.
Can anyone tell me if these things sound suspicious? I've had "high adrenalin" problems all my life and have had several episodes of what my doctor called "adrenal exhaustion" from "hyper active adrenal glands". In a recent search for why I'm making kidney stones my nephrologist noted that although I don't eat huge quantities of salt, there is an abnormal amount of it in my urine - he's concerned. My sweat is impossibly salty. I do have abnormal parathyroid glands and this is causing my kidney stones - I'm going to have to have them removed soon and that's not related to the other problems.

Jim

[Fee]

Hi Jim,
I know what you mean...for the last 8 years I've been told that my dehydration, uti's, pain in kidneys, pain and inflammation in vulva, pain in groins, unstable blood pressure, skin problems, sugar problems, etc., are ALL on account of diabetes...but, recently, I'm not so sure...I also have low sodium bloods (maybe being excreted in high doses in my urine?) continual nausea and occasional vomiting....etc..and last Friday I ended up in A & E locally as I was feeling shaky, very nauseous, extremely dehydrated (licking lips and sore eyes) and my breathing was all wonky...was discharged OK after waiting till my sugars subsided a bit...but still haven't seen the blood gas results and other tests...Could this be adrenal exhaustion...?

Btw, the new gynae I'm seeing HAS told me that I do seem to present with some IS features, including completely closed cervix, and the possibility that I had a shortened vagina, and we're still not sure what that missing 'ovary?' was. He scanned me and yet again it was NOT found...sigh...my previous scans show 2 'ovaries?' before that C Section. Oh, and of course, my estrogen is SO low it is lower than any man's...at 41! My own view is still that I must have had an abnormal gonad which was removed from my groin area along with whatever ovarian tissue was in place....and then hushed up by the medics.

However, things are looking up. I've been in contact with my Member of Parliament, and have asked her if she knows of any reason why my medical records/notes could still be denied to me after the Freedom of Information Act was passed last year...only last October a doctor denied me yet again! She, my MP, has written a very supportive letter backing up my quest. Oh, and I have been invited back 4 times to speak at Great Ormond St Hospital's staff induction training (first one this year on Monday), from a parent's perspective...and I don't mince my words regarding my own children and their endocrinology concerns, though I don't mention their names for confidentiality reasons. I have also been in contact with the 'gay bishop' denied his post within the Cof E and have mentioned my concerns regarding my own and my family's IS issues. I am strongly considering using the media now, and going public about some things.

Fee

[Peter]

Hi Jim,

You mentioned the possibility of having your parathyroid glands removed. In the past, I had thyroid surgery to remove an extremely large portion of my thyroid. I have a "necklace" scar, but it does not look too bad. In preparation for that surgery, I discussed the possibility with my doctor that my parathyroid glands might have to be removed. He mentioned this possibility with extreme dread. When I asked him about the complications of removing the parathyroid glands, he said that such a move was so serious that he did not even want to discuss it.

I am not a doctor, and I do not know the details of your personal situation, but if it is recommended that you have your parathyroid glands removed, you might want to get a second medical opinion on the matter.

Peter