a: can anyone please recommend me an endo in the pittsburgh area?
I’m having trouble finding one near here that knows about nccah.. thank you.
1  •  April 13, 2013, 4:55am
a: Does anyone know how I can find an endo who specializes in this?
I’ve been to several, most of whom really have no clue about this disorder. Thank you!
April 13, 2013, 4:19am
KG: Blurred Vision
Have any of you experienced blurred vision from your CAH? It is like I wake up with a film over my eyes that I keep trying to clear but it doesn’t go away. It seems to come on when I don’t feel well and am having other symptoms and then goes away when I feel better? Just curious...
5  •  April 10, 2013, 6:38am
Site Admin: On April 15th this site will migrate...
After that to view the archives you can use http://congenitaladrenalhyperplasia.net/index.html, which was going to be the new format, but still displays all messages. I’ll eventually add a search there to find older posts. To go to the new social network community go to http://congenitaladrenalhyperplasia...
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April 9, 2013, 6:15am
Jeana: New to this... Please help!
I was diagnosed with late onset CAH last year. At the time I was dealing with a kidney stone that was blocking my ureter off and on and causing great deals of pain, so CAH took a back seat. Now I am ready to find out more about this disease. My 17OHP was elevated when I took my blood test, I was sent to an endo, he said it is just a variation, nothing to worry about...
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5  •  April 8, 2013, 9:28am
Ele: Labs back after 1st time on dexamethasone & ferritin issue
So, I wanted to update you all! I had some labs checked 2 months after starting .25 mg of Dex at night. It went from like 450 to 250 (still higher than should be for my age). I was happy to see the number go down still not sure if another month would make it go down more, or if I have to go up on meds...
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4  •  April 4, 2013, 8:56am
DJ: Treatment after menopause?
Is anyone here post-menopausal with LOCAH? I’m not yet, but wonder what I have to look forward to as far as post-menopausal treatment. I’ve read that treatment is not continued after menopause, but I wonder why - - - the ovaries will reduce function then, but not the adrenals, right? Any thoughts, comments, facts, or experience with this?  Thanks! DJ
2  •  April 1, 2013, 9:22am
Eleanor: Acne Help.
Please help...I am wondering if the acne is controllable in this condition. Nothing I do helps. Would Accutane help? It is the only thing I haven’t tried. I would just do the low dose if I did it. I am aware how strong a medication it is. But I want to know if anyone has had experience with this...
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3  •  April 1, 2013, 8:25am
Ellie: How do you get diagnosed with this illness?
I am 24. I fit all the symptoms of NCAH and need to know how I get referred to an endocrinologist? Do I need to go to my GP and ask them to refer me? Will they start asking me questions or will it not be a problem? Will they say they want to do tests beforehand? I am positive I have this condition as people in my family have symptoms (not as bad as me) which implies it is genetic...
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3  •  March 31, 2013, 7:00am
Wendy: FB page? (nt)
1  •  March 24, 2013, 1:17am
Blood Tests?: Right blood tests?
I have slightly high androgens , not very high,, and now endo thinks CAH..I have asked about PCOS and nothing..I have very little body hair but head hair ok...He is going to do testing for the 21 defect but i think I have the 11-b one...(if i have any)...
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March 24, 2013, 1:16am
Ellie: what medication is everyone on?
What medication is everyone on for ncah?   It seems there a various forms of medication for this illness, so I’m wondering what everyone here has been prescribed? did you choose after discussion with your endo?
March 24, 2013, 10:26am
Ele: How long until I should get labs tested
Hi all! I recently started on .25 mg of dexamethasone at night. How many weeks until I should get my lab work rechecked, specifically DHEAS. I read that it can take 3-2 years to see a difference. So far I am tolerating it well and don’t notice any differences...
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4  •  March 21, 2013, 3:03am
Louise: does an endocrinologist need to see you naked?
I am almost sure I have this illness and obviously I need to see an endocrinologist about it to have it diagnosed..I just really hope he/she will not need to see me naked!! there is nothing weird about the way I look it’s just that would be awful!
2  •  March 14, 2013, 10:24am
zz: does anyone else feel like crap all the time?
like you can’t explain it, but you just feel like pure crap, like if you always had the flu?
2  •  March 1, 2013, 8:32am
Danny Carlton (site admin): Message board migration...
Within the next month or so we will be migrating the message boards over to the new social network platform at http://congenitaladrenalhyperplasia.raredisease.org/. If you go there (and register or log in) you’ll see that we already have an "Adult Onset" Sub-Community, that will serve as the replacement for this board...
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February 23, 2013, 10:52am
maritza: locah and no menstral
anyone here have no menstral cycles without being induced? I am on prednisone 7.5 mg a day my levels are down to almost normal but still not having a menstral on my own. Im also TTC and no luck even with 3 rounds of clomid. I do respond very well but dont know whats going on...
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1  •  February 18, 2013, 3:34am
Sarah: Infertility - ?LOCAH/NCCAH
Hoping someone can help... My husband and I have been going through infertility for 2.5 years now. Have had all general tests and been diagnosed unexplained. My husband has such good results on his sperm analysis, that he could impregnate a small village! My niece has CAH, and I have mentioned to 2 or 3 doctors who all seem to dismiss the idea that perhaps I could have NCCAH/LOCAH, and so won’t do blood tests, 17ohp, etc...
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12  •  February 10, 2013, 5:35am
Chana: LOCAH and Adrenal Insufficiency?
Hi, I was diagnosed with LOCAH about a year ago, after being misdiagnosed with PCOS for several years. Doctor started me on Spironolactone and sent me packing. I went off it recently, experimentally, to see if my period would continue normally. In any case, I’ve been having bouts of incredible weakness lately, where I feel I’m about to keel over, and just feel deeply OFF...
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3  •  February 9, 2013, 9:31am
L: My breasts shrank
Hi, new here, and I’m hoping someone else can relate. I had many of the classic symptoms when I was first diagnosed at age 28. I got severe acne, lost a lot of hair on my head, grew a lot of hair on my body, and my breasts went away. I used to be quite large chested- an F cup- and in under six months I was down to a B cup...
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2  •  February 6, 2013, 8:11am
Ele: Update visit w specialist
I got in early to see an MD who specializes in PCOS and androgen disorders at Drexel University, Dr Sherif. There was a cancellation. She was great and said she has not seen a DHEAS level as high as mine (450-650) in 14 years. In one way it’s good to know I’m not crazy...
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2  •  February 6, 2013, 7:04am