Newbie

[denturemint]

Hi all

Just wanted to say hello and thanks for having this forum...it really means allot for those of us who do not have a support system within 50 miles (or 100 for that matter). I'm just glad to know that there are people out there "LIKE ME" that feel the way I do about things and share some of the experiences I have been through. I thought I was losing my mind at first from doctors telling me that "THIS IS HOW IT IS AND ALL THE REST YOU ARE GOING THROUGH IS PSYCHOLOGICAL AKA DEPRESSION OR NEUROLOGICAL". But I never stopped hearing that little voice inside me telling me, "no they are wrong, there's more to it just keep searching." So I am.

I am 32years old and have Klinefelter's Syndrome 47XXY. I was diagnosed when I was 11 years old. They put me on depo-testosterone for life but I quit at 21 because I had a major problem with gender identity. To make a long story short, I have been off of HRT for 11 years now and I went back to an endocronologist wanting to get back on (for lack of muscle strengh and concentration). The blood results that came back said that my testosterone level was normal...of course this was the total testosterone. I was in disbelief because before I started HRT when I was younger my levels were below average....so I was wondering if it was possible for a person's hormone levels to normalize on it's own like that? So my genetic counselor told me of another testosterone test that I could take that was more acurate called free testosterone which is biological I was told and those results came out normal too!! (72 out of a range of 34 to 194)..even my sex hormone binding globulin level was elevated (80 out of a range 5 to 49) and i have little to none libido!!. But despite the fact that my testosterone was normal, my FSH and LH levels were very elevated which raised some concern. When FSH and LH levels are high, testosterone is suppose to be low I was told by my geneticist. ...and are somewhat elevated when one is on HRT.

I know that the pituatary gland secretes excessive hormones, but my levels are higher than a female in ovulation and my testosterone is normal....so I don't know what's going on but my body has masculinized allot more in the past year like all at once and I have internal tremors which I was referred to a neurologist to see about. He diagnosed me with cerebellar degeneration but the MRI was normal so I don't know. I have to get an EMG to confirm that later.

So I am still on the path of finding out the truth with my body, if there's anything to worry about or not.

Hope everyone is having a great day!!

Denture

[Kailana]

Hi there Denture, I hoope your doing well. I have not scene any one else say hello to yah yet. So i am happy to be the first.

?thats a quetion could you put in the Scientific Measurement reference ranges in? you know Like "80 ng/dl." thats nanogram per deciliter.

There are several tests out there. And while i am not a Doctor or usually right, i have had both total testosterone and free testosterone levels checked on several different occassions. Well were im going with this is that my levels and ranges were quite different, Total testosterone: 1.6 ng/dl ref range (2.1-10.0) being normal, and free testosterone 2.07 ng/dl ref range (0.00-24.4). And while my lab reports tend to say that these ranges are the male ranges i havent had much luck confirming that.

I have also looked a few times trying to find these ranges in Medical text books. Usually testosterone is measured in 100's of ng/dl for males and generally less then 100 ng/dl for women. i wrote those that way for a reason, there is some variation when labs are drawn using different size collection viles. but either way women tend to have a great deal less then men. And from all of the references ranges i have found total testosterone levels at there lowest tend to still be in the 100's range 150-400 ng from a 2 ml or as much as 300-1200 ng/dl out of a 10.0 ml collection tube. collection tubes tend to range from 2-10 ml references ranges tend to change somewhat with the collection and the testing system used. i m not familiar with those, so i cant say how or why there is so much variation in reference ranges, by the method that the test is performed on.

i tend to question alot of things that i dont understand. i ask alot too, soo i hope im not intruding too much. I look at a lot of things and generally think somethings odd with them. then again i am on HRT so maybe they should be low. im a basketcase so it could be im just a little off from time to time.

a Question? Do you have copies of your labs? If not, are you sure what you were told by your geneticist is accurate. I tend to question alot of my records. Because of discrepencies. im sure my endos quite annoyed but at least even she thinks my total testosterone levels look more like a free testosterone levels. So maybe im not so crazy after all.

Sorry for the diatribe, useless bantor, and what not.
im in a playfull mood this evening.

Please take care, and try not to ponder to much what is or isnt normal. its a tedious thing to constantly wonder, im sorry so very sorry if this happens. i didnt mean for it too. im just curious.

Best wishes Kailana:sign16: :wave1:

[neko2]

I have to agree those numbers don't make much sense without knowing the units. The free testosterone range you gave is not reasonable for units of ng/dL or pmol/L, but might be pg/mL. Usually it's written as a percentage of total testosterone though, so that's a little odd.

Anyway, FSH and LH are hormones which stimulate testosterone production. If testosterone is low then FSH and LH will increase until testosterone levels are normal. Increased FSH and LH is expected for 47XXY, although in some cases the testosterone level will still be low despite FSH and LH being high.

[Kailana]

Once again i thank you.

I didnt understand the relevance of how FSH and LH reflected Testosterone production, My FSH and LH tend to be low as well, along with the low testosterone, so im still a little unsure, then again im on HRT, so sho knows.
Would taking spironelactone keep LH and FSH low? along with testosterone?
Its a potassium sparing diuretic that side affects block male androgens. Am curious once again. Although My labs/levels werent much higher before HRT when i wasnt taking estrogen/spironelactone.