What's the XYZ on CvAH

[Amy1976]

I saw that CAH is 46XX but whatr exactly is the V???? does that have a category in there somewhere??? I think I am getting the hang of CAH but I still am trying to get the V???

[claraJane]

Hi Amy,

The "v" in CVAH stands for virilizing. Virilism refers to masculine physical development. That would include facial hair, voice deepening, shoulder breadth, and other characteristics one would normally associate with a male rather than a female. It might also include the effects of testosterone on the brain and behavior.

Women who take steroids for an extended period may also experience such development. And it is normal for women, as they age, to experience some such physical development. With CVAH, however, it is the degree of development that may be considered unusual.

Please correct me if I am wrong ladies but my understanding is that it isn't the virilization or the high levels of androgens that is dangerous so much as the low levels of cortisol.

Cheers,
cjs

[Wohali]

Hey ClaraJane,

Not everyone with CAH has low cortisol. There is non-salt wasting CAH. And then there is salt losers under stress (surgery, shock, injury) like myself. Those with CAH usually have an enlarged phallo-clit and more than just extra facial hair. Many have the male type chest & abdomen hair, sometimes early puberty. The extra androgen can cause problems like endometriosis or ovarian cancer, so its good to get ultrasounds to make sure everything is ok inside.

Angela

[Amy1976]

ClaraJane and Angela,

I knew literally that the"v" meant virilizing. Just looking at the word you can gather the word "viril".

ClaraJane- My body makes too many steroids of it's own. So i understand that. My "hair" issues didn't start in puberty. They started Around the age of 20. The deep voice, I really don't notice too much except when I am sick. I sound like a bullfrog. :p

Angela- I am a salt-loser. Sadly to say I do have the extranious body you speak of. It only bugs me when bathing suit season comes around. I hate having to "not be me" though. Society has its standards, anyone out of the norm will be ridiculed.

To Both Of You: I guess from both of your responses, I guess you could say that I have the"best" of both worlds. Whoohoo! :)

Amy

P.S. Is there anyone else out there with the "V" ??? So far I gathered that I am the only one. PM me here, or >>> visit my site <<< (http://cvahgirlfromde.tripod.com) It has more about me than my profile here.

Thanks again to you both! H.A.N.D. ;)

[Wohali]

P.S. Is there anyone else out there with the "V" ??? So far I gathered that I am the only one. PM me here,


Amy,

CvAh is not a term used anymore. It's like an older term. Everybody uses CAH. Just because we don't use the v doesn't mean we don't have virilizing. I have been mistaken for boy throughout life. Recently I got second looks in a public restroom like if I should even be in the ladies room. Talk about making me feel uncomfortable. As I am starting to go through menopause and not making as much estrogen, the virilizing is more evident as I am getting hairier each day.

Angela

[Julia S]

Amy,

My daughter has salt wasting CAH. Ever since she was born I have researched CAH as much as I possibly can. From what I've read those with cAH make significantly less cortisol than the body needs. The body tries to make cortisol but only ends up making excess male hormones, due to a missing enzyme. This is why you have excess hair and all the other things. I mean, I know that this can happen, but not as pronounced if on hydrocortisone to replace what your body can't make. There are even antiandrogens that you can take to block the production of excess male hormones that your body is now being flooded with. I also worry for your health, as CAHers need the meds to help fight stress from illness, injury, daily life on this planet...etc! Can't you get on your state health plan, that all states have, so that you can get the meds you need? Take care, Julia

[Wohali]

Julia,

Sorry to be butting in on Amy's thread, but I was curious about some of the things you said. My dr told me I have CAH, but my cortisol tested normal and for that matter 17-OH too. At the same time she said the problems I've had after surgery and during illness were caused by my salt loosing under stress. What I am confused/concerned about is how to get the meds when/if I need them. Will I know I need them before its too late is another thing? I don't have a local endo to turn to and my dr has said she has gone as far as she can go in treating me. There is one endo from Phoenix that comes up once a month. However he does not take my health insurance. I was told the initial consultation with him is $340, plus he does ALL his own lab work which costs between $250-1,300 depending on the tests. They have no payment plan, expect payment in full on day of visit. What are IS people suppose to do for medical help when there are no endos in town?

Angela

[Betsy]

Hey Angela,

There are several types of CAH. In salt-wasting, the meds are pretty much necessary all the time. But you could have a "different variety" that doesn't have severe salt-losing except under stress.

Does the endo who doesn't take your insurance even consider fee cuts in your situation or maybe you can scrape up the money together and then submit it for reimbursement with your insurance?

Betsy

[Wohali]

Thanks for responding Betsy,

Believe me I've tried every angle with this endo. He will not cut charges. From his focus on money, I get the impression I might be better off without him as he seems to put caring for the sick as a low priority. Whereas the gyno I see now will reduce fees, is always careful to make sure insurance pays for my tests and has even given me free supplements for the hypoglycemia. It's pretty obvious when doctors care about their patients.

My insurance will pay 70% of reasonable & customary charges for endo. That leaves me to pay not only the 30% but also the "unreasonable" charges as insurance pays ridculously low. As example my karyotype cost $1,200, or at least that is what the lab billed insurance for. Insurance paid lab $33!!! Because the lab was in network I was not liable for the difference. I can't scrape together a few thousand $ Betsy. I'm still paying on the breast biopsy I had the insurance refused to pay all of and then the $2,500 vet bill for my kitty. sigh :(

[Julia S]

Angela,

I'm so sorry that you are having this trouble with insurance. It's quite ridiculous that insurance won't cover what you need to have done. I'm sorry that I don't have any answers for you. Can you travel to an endo that your insurance will cover? We used to drive 7 1/2 hours for my daughters old endo until we found one 2 1/2 hours away (who we think is THE BEST!) Have you ever been on meds daily? THis is why I was concerned about Amy because she used to be on meds and isn't because she can't afford it. I have heard that some with CAH don't need to be treated on a daily basis and I've heard of some that are only carriers of CAH that do need to be treated. But as Betsy said you might need some hydrocortisone around for illness or injury. If I was you I would want the injection around also for emergencies. So when might you need extra meds? If you have a high fever, vomiting, diarrhea, broken bones or head wounds. Good luck with all this. Julia