Different and Sick

[Guest eccentric]

Hello everyone,

I have a learning addiction so I surf the web a lot. I stumbled upon a diagram showing what I have. It's on the Prader Scale. I know I don't match the female diagrams, and ob/gyns have told me I just have a "natural variation," but I hadn't seen a sketch until now.

I wouldn't normally care except I have other health problems.

I've struggled with low blood pressure symptoms for a long time. I've asked many doctors about hypotension over the years but no one has pursued it. I also have symptoms of hypoglycemia but I think they're connected to hypotension.

I'm most concerned about my weight loss. I'm getting older and I can't eat as much as I used to. I can't control it now. I can only slow it down.

I need to resolve these health issues and I think they may be tied to an intersex condition. I want to get tested for any conditions that have a link to both hypotension and weight loss. I'm not sure where to start.

Do I talk with my GP or an ob/gyn first? How should I start the discussion? Should I request specific tests or let the doctors take the lead on that?

Thanks in advance for your advice.

-- eccentric

[Paula ult]

We are not doctors here so only your GP or ob/gyn can give you clear answers but i will offer a couple things they might want to look for.

Losing weight can be a sign of diabetes, do you drink allot of water, are you always thirsty, do you have to go to the bathroom often, these are some frequent signs, has your GP checked your blood glucose level, a simple blood glucose test can be done in your GP's office.

Have you come across DES (diethylstilbestrol) during your research, it was given to expectant mothers from 1938 until 1971 to help prevent miscarriage, i see you were born within that range, you said i don't match the female diagrams, that is one clue you could have been exposed to DES, if your mother is still alive ask her if she was given DES, Diethylstilbestrol or stilbestrol, sometimes mothers were told they were just vitamins, if she was given DES let your ob/gyn know this fact, here is a link to the CDC DES website on DES.

http://www.cdc.gov/DES/consumers/about/history.html

DES also affected males, transsexualism being one side effect, i was born durring the peak time DES was almost given out like candy and suspect my mother was given it since she was in a high risk group for miscarriage, i will never know because she is deceased.

Paula

[Guest eccentric]

I definitely want to talk with my GP or ob/gyn. I'm not sure which one, or what to ask, yet.

My glucose test a few months ago came back little low, so it's not diabetes. I can ask to have it checked again.

But it's funny you mention DES. My mother told me long ago that she refused to take it. She would have taken a multivitamin, though. I'll call her and ask about vitamins. I'll also follow your link.

Thank you for the advice Paula. I'd welcome more from others as well.

-eccentric

[Guest eccentric]

I called my mother - no DES. I'll ask my doctor about any connections between my symptoms and intersex conditions.

Thanks again. I'd rather learn about this than not. If you or anyone can think of anything else, let me know.

-eccentric

[JJ]

I've had hypotension most of my adult life off and on-my great grandfather actually died of it. I also have a heart valve that malfunctions at times-not a big thing as long as I slow down when it happens -and I believe they are related. I can usually control the low blood pressure by increasing my salt intake. Found that trick when pregnant and had toxemia. When they took me off salt my blood pressure plummeted to dangerously low levels. BUT please clear any approach withour Dr. The low blood pressure never affected my ability to eat and my weight never affected it either even when I ballooned to somewhere over 340 lbs. T seems to have taken my pressure into normal range now and I have to limit salt now rather than increasing it, even though I have lost approx 200 lbs,

I also have hypoglycemia but it is atypical-was told I was pre-diabetic over 30 years ago and would be within 5 to 8 years.Though my blood sugar has been tested in the teens on a calibrated acurate glucometer I have never become diabetic.It is related to the DES I am sure and my mother did take it. Luckily she told me so when it was banned in case I ever had problems from it-which I have.

Physiology and blood chemistry can be so complex and varied from individual to individual! That's why we so stress taking medical issues to the Dr, because what works for one can seriously harm someone else.

Johnny

[Guest Peggy]

Hi eccentric,

You should check with a doctor for a diagnosis, and you will need one for treatment anyway, but I am 99% sure I know what you've got.

Aytypical genitalia, low blood pressure and hypoglycemia spells one thing -- called CAH.

Congenital Adrenal Hyperplasia (CAH)n is associated with the above 3 things. The cause is an enzyme deficiency that blocks production of cortisol, with some effects caused by lack of cortisol and others (like masculinization) caused by accumulation of excess precursor hormones to cortisol. The remedy is to replace the cortisol with hormones taken by mouth.

Ideally, CAH should be diagnosed and treated by an endocrinologist.

If you contact me backchannel at ************************ I can put you in contact with others who have CAH. (I don't myself.)

Friendly greetings to all,

Peggy

Edited June 15, 2012 by MaryEllen
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