Hi everyone,

I could really use some input about whether I might have a form of AIS or an other intersexed condition. I was in Afghanistan and when I came home I was in pretty bad shape regarding PTSD. I had a lot of fatigue and found a doctor who looked at my adrenal glands and endocrine system. He had me take a serious of hormone tests and was completely puzzled by them. He called in others to see if they could make sense of my labs. I have 4 reports showing the same effects:

I have very low testosterone
Very high Estradiol
Very high (off the chart) LH, and FSH

My puberty was a little delayed, and I have a fairly slight build and have apparently always been infertile. I also have always had a lack of sex drive and I identify as female.

A karotype came back with my chromosomes as XY.

My secondary sex characteristics did eventually kick in and I look pretty male (body hair and all that yuck). I also have normal looking genitals.

I started female hormones and androgen blockers because I thought I had Gender Identity Disorder, but then I found out my doctor had me down as AIS though he never told me and we never went through official tests to determine it. I don't know what is going on. I love my female hormones and the effects physically have been very rapid, which I couldn't be more pleased about.

Has anyone ever come across these indicators? What is going on?

I have 5 friends who all have variations of your condition and had 6 testicles, one average and two mini penisses between them... they all live happily as women now.

get some more input from a specialist in intersex.

Quote from: lilacwoman on December 13, 2011, 01:53:37 AM
I have 5 friends who all have variations of your condition and had 6 testicles, one average and two mini penisses between them... they all live happily as women now.

get some more input from a specialist in intersex.

Thank you. That is comforting. Unfortunately, I live in a small rural area and will have to look in other cities for a specialist. This issue is frustrating because he started billing everything, including labs, under Gender Identity Disorder, rather than the dx he had for the last two years (AIS). Of course insurance will gladly cover services for AIS but not GID.

tell him that gender identity shows in your brain and your problem is in your blood so it is AIS not GID.

you could try COMPLAINING over his head to whoever pays the bills or is in charge of local health service/ medical funding.

Harry Benjamins specifically exclude intersex as a GID condition anyway so technically the guy is defrauding the financers.

You said that you came back from Afghanistan and I assume that means you are a veteran. The VA can help you and you may even be able to get GRS out of them if you are intersexed. If you need help or have other questions about the VA you can PM when you get to 15 posts or I can answer them in this thread if you want help earlier.

Huggs

Emily

Thank you for your advice. I have an appointment with him next week and I think I need to ask him about the AIS dx. I really want to know if he put that down as a legitimate dx. If I am intersexed, I want to know for my own sanity.

Just wanted to wish you well. This sounds like a gigantic headache. Definitely grill him about all of this. If he continues to bill this as GID instead of AIS, seems to me you need a specialist who is willing to go to bat for you with the insurance provider.

But the VA sounds promising...

The AIS route does sound promising. Make sure to get a copy of your medical records. That way if you decide to see someonen else, you can give those records to your new provider.  So.... you could start over that way with the insurance companies.  It's just a thought for you to consider. I really hate to give advice when I don't know all the details. And for what it's worth..... my advice is free and worth every penny.

I can certainly understand your confusion and difficulties you must be enduring... especially coming out of a combat zone. I do want to personally thank you for your service to our country.

Cindi

Quote from: tara tricks on December 13, 2011, 12:27:38 AM

I have very low testosterone
Very high Estradiol
Very high (off the chart) LH, and FSH

My puberty was a little delayed, and I have a fairly slight build and have apparently always been infertile. I also have always had a lack of sex drive and I identify as female.

A karotype came back with my chromosomes as XY.

Possibly the 3-beta-hydroxysteroid-dehydrogenase II deficient form of Congenital Adrenal Hyperplasia. 5-alpha-reductase-II deficiency, or 17-beta-hydroxysteroid-dehydrogenase 3 deficiency, but could be a number of other things instead. All can have similar symptoms, and can be mistaken for AIS. Often (but not always) associated with a feminised brain.

You need to see an expert Endo. The Gender Identity issues are separate