Discussion in 'PCOS Community' started by joan, Jan 27, 2011.
Hi dying curls. Can you share what treatment the docs used on your cousin for LOCAH?
I have heard the treatment for LOCAH is steriods or birthcontrol. Who knows - depends on which doctor you ask. I never thought this would be so hard to figure out.
I think the treatment for CAH in adults is usually low dose Dexamethasone.
Here is a link:
Joan - If your 17 OHP (17-Hydroxyprogesterone) was slightly high, then I would try to locate an endocrinologist in your area that specializes in CAH because that is the most standard test for that condition, I think. Being high, may mean that you have it. I have found that not all endos are created equal. If you look at their websites etc, you will notice that they usually mention what they specialize in or what their area of interest is. Lots specialize in diabetes or thyroid etc. I have been using the internet to search for an endocrinologist who specializes in Cushings in blank (enter your City, State). I have been diagnosed with PCOS, but my mom wants me to rule out Cushings since my RE has not even tested my cortisol or even mentioned testing it. Interestingly enough, doing this led me to an Endo in my area that has expertise in PCOS, CAH, and Cushings. His website states that he researches these conditions as well and he even lists way more tests out there that should be done. His research has even led to even more things being related to PCOS, which I plan to post more in depth about it a future thread. Amazing what you can learn and how different your experience can be if you get lucky enough to find the right doctor. It seems to take a while these days to accomplish that, but worth it in the end. Please don't give up. Try to find another doctor who will take you and your test results seriously. My daughter is quite thin now and they don't want to believe that she may have it (PCOS), even though her symptoms are way more severe than mine ever were at her age. However, I told them that I was even more thin at her age than she is, and look at me now. They initially only agreed (at my urging) to baseline test her Testosterone, DHEAS, and 17 OHP. Her Free Testosterone came back and seems high, which explains her severe acne. They have now agreed to more testing. We just have to advocate for ourselves because ultimately we know our own bodies best and usually have a sixth sense about whether something is truly wrong or not. Good luck!
By the way, my RE just does a fasting insulin level, and if it's high you are considered to have insulin resistance. Per my lab, over 25 is high. According to Dr. Geoffrey Redmond's book, It's your hormones, over 10 is high.
i thin it's the treatment kristi mentionned.
My cousin put on weight very suddenly and developped acne when she go diagnosed, she has no hair loss though and a beautiful mane...
i also know that her treatment is not a daily one...
Can you please share the website of your endo. with me? I am always interested in learning more about these conditions in hope of figuring this all out.
Also, Dying curls - what do you mean that they did not need the treatment daily? How often do they take it? Just wondering.
Also, as i am considering many options now - have any of you not gained weight on the pill? I need to gain a little but don't want it to become a problem because I do have IR. Any insight would be appreciated. Thanks everyone!~
I do not know for sure, but she goes several weeks with the treatment then get off it for a few weeks then back on it...
but she does not have pcos she has late onset of adrenal hyper.....
I know she spend a few days at the hospital to do further tests a few months ago. I do not see her often so i can't tell you more.
I know that classical hormonal treatment with antiandrogen and the BCP did nothing for her.
her symptoms were/are acne, weight gain, unwanted hair, impressive stretch marks, and exhaustion. She has fabulous hair though....
I never gained weight on the pill.
It's not because you are IR that you are more likely to gain weight on it.
But you need the right pill.Some girls will put a bit of weight on it other wont, and the fact you are IR is not really important.
Actually the pill tent to give you more water retention, so usually it's more a swelling that is observed than an actual gain of fat.
Isn't stretch marks a sign of Cushings and not LOCAH? Thanks for all your responses. I am scared to try things - you never know if they will help or hurt you.
By the way DC - are you IR?
Maybe her strech marks arent related to her problem then ?
she starte to have this issue around age 20.
Other than that she's a tall blond girl, on the chubby side but she also is big boned, she has a big breast.
To answer our other question, but I think i did earlier in this thread, I am very probably IR since when off treatment I have sever acanthosis negrican, when on treatment my acanthosis negrican disappear. My father is diabetic, and my paternal grandmotehr probably was too.
I dont have any treatment for IR because it's not in the protocole here in france ot threat PCOS girls via an IR treatment like metformin, and when i ask docs about metformin they say i am too thin to be put on it (but they just dont want to talk about it).
I will try everything i can though to be on the day i ll try to get pregnant.
Do you mean that you better on birthcontrol? Is that the treatment you are talking about? I have heard that BC makes IR worse but maybe it helped with you. I wish someone would give you metformin to see if it helped. I'm sorry that they won't. I think it should be your choice as it is your body. I too am thin,underweight, and they gave me metformin. I am not taking right now as they are still trying to figure out what is going on exactly. MY hair loss is killing me though. I hate it.
Well as soon as you get a proper diagnosis, docs will know what to do with you.
I have PCOS plain and simple (if one can say PCOS is simple...at least PCOS is easier to treat than late onset of adrenal hyperplasia, or cushing ).
When you have PCOS being on birht control usually helps a lot. The birth control pill do not make IR worse, unless it's an androgenic pill (you need an antiandrogenic pill when you have pcos or at least a neutral one). For some reason the birth control pill and antiandrogens (such as spironolactone or cyproterone acetate) improve your body reaction to insulin levels. I remember i asked this question to my doctor and he came with that answer, i also read a study online confirming this a while ago.
So no, the pill will not make your insulin resistance worse. Right now my insulin resistance is "masked" by the birth control pill and the ten pill of cyproterone acetate i take along with it.