Anyone has or being tested for late onset CAH

[MandyV]

Anyone else has or being tested for late onset congenital adrenal hyperplasia ? It runs in my family my brother has had it from birth long story short his adrenal glands do not work.

So after some research me and my DH found that in females who develop CAH later in life or have always had it and never known it effects there reproductive organs and commonly misdiagnosed with PCOS due to one of the symptoms being many cysts on ovaries and irregular periods excess hair both pcos and cah have the same symptoms

So being that my brother was diagnosed I am now being tested if I have it and also tested if I am a carrier

My brother is normal btw just has to take steroids everyday in order to take the place of his adrenal glands so steroids take the place of the lack of adrenalin in his body.

If I do teat positive for late onset CAH my dr said the solution to my ovary issue would be a small dose of steroids.

So I'm still waiting for my blood work results !
Just wondering if any of u ladies have heard or are experiencing this too
Doubtful tho.

 

[Mum2many]

Hi mandy, i was diagnosed with cah wen i was 12, at first i was told i had pcos , spent hrs goin from doc to doc to specialist til one endocronoligist finaly diagnosed with me cah...i take dexamethazone to stabilise hormones, i have 4 kids which were conceived naturally, thank God they r fine, they were all tested as babies..let me know how it all goes for u

 

[Caezzybe]

I found out today after reading my Mum's autopsy report that they found adrenal hyperplasia (she died from heart disease and it was incidentally mentioned too). It was a big eye opener and explains symptoms I started to get from 24 onwards (about 12 years earlier in age than when my Mum got symptoms). I have hirsutism, lifelong hypoglycaemia, impaired glucose tolerance and borderline hypertension. All these have been classed as "we don't know what's causing it" by doctors, who only seemed concerned with throwing tablets at blood pressure symptoms and not identifying causes. Well now I have proof that a first degree relative had late onset COH, I'll be asking for a referral to a consultant. It makes me worried for my kids too

 

[CourtneyB]

i was tested for it cause my cousin has it along with pcos. my tests came back normal. it's easy to treat though. my cousin takes a steroid (don't remember which one) and metformin. good luck! I'm sure everything will be fine

 

[Caezzybe]

I went to see my GP earlier this week and got an immediate referral to an endocrinologist. I do have private medical insurance through work, but my GP said she would have referred me on the NHS anyway. I'm glad I'm being taken seriously!

 

[MandyV]

Sorry ladies I never noticed anyone posted on this thread! I ended up not finishing my tests for the blood work since it was sooooo expensive, I ended up getting pregnant with our 1st LO with the help of a fertility dr and then second was conceived naturally.

But my mind is now racing like crazy!!! I and hormonally all over the place my pcos is worse than ever, my Bp is little elevated.

I had very very rough pregnancies with lots of heart issues. And I seriously wonder now if everything during pregnancy and everything I'm experiencing now is because I was never properly diagnosed.

I think I may just need to visit a endocrinologist.