Congenital Adrenal Hyperplasia

I am 33 years old I found out that I have congenital adrenal hyperplasia. I have all the wonderful effects from this disease. I didnt know I had it till last month on Feb 12 I found out that I had been living with this and never knew it, I was told that I had PCOS and that I would never be able to have children boy were they wrong, I have a 14 year old who is a blessing because after her I didnt conceve again. They said it was due to the scarring from my C sec but then they removed it and still nothing. Went to a new RE and she read my files from my other doc and found that my doc from when I was younger put that he thought I had congenital adrenal hyperlasia. And I cried because now I got some type of answers that I should have gotten years ago. She told me she was going to run test and see if I indeed have it. Sure did come back Hi and she ran a stiulation test and it came back + for CAH and I was like wow took 15 docs to find out I had this and this is the reason I am having all these problems and didnt know it. She told me that I will need to start on dexamethasone and take it for the rest of my life. So I will start them this week. I am not sure about this disease I have read up alot about it but I think its better to talk with people who in fact are living with this and are taking dexamethasone and how has your life change. I want to hear people are dealing with this and are on this same meds and what should look forward to.

[rumpled]

Hello!
Stim tests, to the best of my knowledge, are for Addison's or AI - but the test for CAH is a genetic one...
There is a link in the health pages about CAH (actually a couple) - there are many forms - and so it is not an easy diagnosis to make hence why most doctors will not look for it (or any adrenal disease!).
Docs tend to toss the PCOS at everything for women... I got that too... I had Cushing's!
I take dexamethasone now - but my issue is a bit different - my adrenals were removed and I am suppressing ACTH from a pituitary tumor. Make sure you read up on the side effects - keep track of your bones, your eye health etc. Long acting steroids are vital for us on one hand, but also have side effects.

[Sobie]

Wow sorry to her u have AI. I am so happy they found out I have CAH because I didnt know that my health was bad do to this. She told me that it effects your body as a whole. I was told that they will have to montor me every month to see how the meds are treating me. I worry about long term and what it will do to the parts of my body. I know that being on this meds we have to take better care of our selfs and not get colds or flus. Its scary I know and I am always worrying about everything. The first night I took dex the next day I had some leg pain but went away now, also it knocks me out everytime I take it, I take 0.5 mg one at night. Is that normal??? I am not sure but I dont mind the sleep. Also I wake up more at night then I did ever I am peeing more at night now since I been taking dex. I would normally get up maybe 2x a night but now it more like 5-6x a night. I like talking to others who are taking the same meds and I know everyone is different and everybody not the same but its always good to know. I joined a CAH help group and they have many stories but not those who are like me. I am a NCAH which means I got it later in life not birth. I am also taking prenatals as well since I dont eat alot of fruits and vegs. I drink lots of milk and try to workout as much as I can. thanks for your input.

[rumpled]

I get monitored every few months, and a bone density check regularly - plus regular eye check ups and all.

The dex tends to build up in the body. It takes a few hours before it kicks in, which is why you take it at night. It is a long acting corticosteroid. It is usually taken in one dose since it has a long half life - up to 56 hours. I would talk to your doctor about the increase in getting up to go. I know I get up as well - but not always that much.

Are you a salt wasting form or not?

[Sobie]

Have you ever had problems with your eyes before dex? or they just have to run those test just to keep you montor? wow you know so much thanks for that, see I didnt even know thats why I was taking it at night and how long it last in ur body. I will def talk with my doc about me waking up at night more now, I also been keeping a record book about every thing that I feel when I take it on the days or next days of taking it. I had some real bad tummy pains yesturday and I think now it may have been some build up of gas cause it hurt so bad but when I lay down it went away. So I am keep all my problems in a book so I can go over it with her. How long have you been on dex? I am not 100% sure if i am salt wasting form, because before dex I would pee more during the day and I would crave salt all the time and be thristy all the time and when I drank I would have to go pee right after so I maybe salt wasting form. I am now less craving salt almost none at all now and I dont pee after drinking water like before, I would go like ever 30hr no lie. But now only when I take my meds at night I get up to pee. But not during the day, my DH would be like ur going again you just went, now is like omg I have not pee in like 2hrs wow thats great. I have high levels of male hormones and that was the many reason the GYN sent me to see this RE who found I had been living with this and she said and many other doc said I was not the normal PCOS and I was like so what is it and she found it out. I hate that other doc never wanted to find out what I had and just put the blam on PCOS and I was not even the normal PCOS.

[rumpled]

I have only been on dex for about 6 months. I was on cortef before. I don't get any stomach pains at all - just more hungry... dang it.

I have had eye issues forever - so nothing is new - so I get checked all the time anyway. I am salt wasting and my BP is super low, so I take salt tabs and salt my food etc - so my issue is different in that case.  I seem to pee more at night than during the day - grrr...

I used to have high testosterone and all - I had PCOS and fibroids and endometriosis and etc etc etc. Finally got it all yanked out.

Yeah the docs go for the easy diagnosis. And once it is stuck there, never look further.

[kevieb]

is it the medication or the AI that affects your vision?  my eyes bother me a ton ever since i started with this whole nightmare of docs with differing opinions on my diagnosis.  i am completely off of HC right now, but my vision has never gotten better--and i am a basket case emotionally.

[rumpled]

For me, it is not the medication. I had Cushing's which is famous for effecting the muscles around the eyes. I also now have myasthenia gravis and it effects my eyes and my throat (if I get tired I cannot swallow) so... I get tired, I see double - and have since I was a kid. So I kinda think my hormonal issues or the MG or something was around forever? Unknown. I have no depth perception for it.

[kevieb]

how bad is your myasthenia gravis?  Not being able to swallow must be a horrible feeling--i really feel for you!  i have trouble swallowing certain things and sometimes food gets stuck--but i have severe reflux esophagitis and a hiatal hernia---and possibly eosinophilic esophagitis.  i should have had surgery for it years ago when the surgeon tried to tell me i needed it.  i have had to have my esophagus dilated 3 times.

I just recentl;y discovered that adrenal insufficiency can cause more eosinophils-----i am finding that all these seemingly weird and unrelated things i keep getting diagnosed with are probably all related to the adrenal insufficiency and low thyroid.

I had bilateral shingles when i was 4 years old--shingles in someone that young in the 60's was really unusual--and bilateral shingles i rare in anyone. i also had osteomyelitis when i was about 3. it's not the most common thing in the world, either.  both of them indicate a compromised immune system.  now i am learning that if your endocrine system is out of balance--then your immune system is compromised.  i'm guessing that i have probably had this problem to some degree for most of my life.

[Sobie]

How long did it take to lower your testosterone, I too have very hi levels of testosterone. I have to save my chin every day its so bad. I have the hair loss on my head but now not as much as before the meds, I had lots of hair loss on my head before meds. But now its like none almost which is so great. I have been on dex for only 14 days today. I spoke with my doc on thursday when I had a bad night she sent me to the ER and they found nothing all was fine thank god but still dont know what was causing the pains in my belly. But I am eatting less now but more offten just so that wont happen again. she also ran blood work for my 17-OH progesterone again to see how its doing and to see I guess if all ok.

[rumpled]

It took a while... and it took a combo of things to occur for it to lower. It was not just one thing causing it, and it was a wild ride.

Oddly, my T is super low and I still have what my hubs refers to as the goat chin... of all the things, THAT stayed... grrrrr....

He calls me Billy if I forget to manage it. :)

[Sobie]

wow so sorry, turst me I know the feeling. I was taken metformine before to low it but didnt help lower it but some crazy reason it help with the hair. I didnt have to shave every day. My husband is silly like that too. He has yet to call me names cause he knows that ALL my life they always made fun of me my own family and he know how that hurted. so he dont call me silly names like that. but if I forget he tells me wow, you have a five o clock going on there honey. I know its going to take time but I wish we didnt have to have this. I had got my face lasored but they said it wont go away since I have PCOS and I would have to fix that first at the time that is. But its so much better now then back then when I was a teen wow did I get made fun of and my mom would not let me wax or shave it took a teacher to help me because she had the same problem and she naired it off for me. wow

[rumpled]

I tried metformin (it uh, made me run for the toilet) and spironolactone (that was awful too) but nothing helped.

Hubs only calls me that on occasion and in good spirit... so I can handle it... Your family sounds not so... nice. I used bleach for a while on my 'stache - I was allergic to all the nair type things and once I tried the waxing thing and I was allergic, I guess to the oil they put on after or something - it blew up like crazy so I looked like I had poison ivy!

[Sobie]

I know our husbands mean well. Yea my family is very mean and I dont listen to them any more. I have grown to love my self just the way I am and my husband love me for me and thats all that matters to me. I keep shaving and plucking and I have made it a routine so its all good. I pluck my chin and it looks so great after and last longer then shaving and so soft. I used to was my stach but I for some reason dont have one any more its more on my chin then anything.

Well on another note the Dex has help to make my hormones normal so that good. I am happy things are working it only took 19 years lol...
I am trying to get my health good so that way we can try to have a baby. If it had not been for us trying to have a baby I would have never found out that I have CAH and would have not gotten healthly and doc said that would have put me in high risk of having a heart attack or storke. That scared me, so I am happy that all came out and now they are fixing my problem.

Have you guys tried to start a family or do you have children? I have not talked with anyone who is TTC and has CAH its like I am alone and everyone has CAH but I have Late onset CAH so things are different for me then the normal CAH they were able to be fixed or started on meds earler in life but as for me now 33 am working on getting fixed so its hard. I happy I found you an you have been helpful. thanks

[rumpled]

I was unable - but I had other issues as well...

[Sobie]

sorry to hear that. In god's time all things will come.