HEIGHT, Type, Bone Loss and more [Archive] - Intersex Community Forums

Sunshine1

06-15-03, 08:44 PM

How tall is everyone with CAH? Brave souls can also say what they weigh but only if they really want to!

Also, what kind of CAH do you have ? Late Onset, Simple-Virlizing, Salt-Losing. What cortisone do you take? Hydrocortisone, Prednisone, Dexemethazone and how much ?

While I'm at it, how is everyone coping with the bone loss due to the cortisones? Do you take calcium supplements? Try to have more calcium in your diet ? Take a pill like Actonel to replace the bone loss?

I don't have much of a problem with excessive hair but I was wondering if anyone got a perscription of the cream vaniqua (sp ?) for excessive hair and did it help them ?

Does anyone have an Endo that is empathetic about the surgeries that were done? I have a great Endo that I feel comfortable with about the medical management of CAH but the surgery part he doesn't say much and seems nervous when I bring it up, it's like he tries to side step it. I could be wrong about this though (smile) unlike my gynocologist who stated, "Those surgeries haven't change much in 50 years ...it's terrible." Just to have him validate what goes on made all the difference in to world to me.

Jumping around here but do any of you feel rather "off" in the morning and atribute that to low cortisol level in the body?

Thanks,

Aimee Smith-Morgan

Sunshine1

06-18-03, 08:27 PM

Dear Betsy and to the ones that sent the private message !
Thanks for the reply! I'm forever curious and I like to compare notes about different treatment throughout the years!

I'm 5' 1" 135 Ibs 32 but I look 26 I take 10 mgs of hydrocortisone between 6-7 am 5mgs between 2-4 pm and 10 mgs between 10- 12 pm. I like hydrocortisone, it makes me much more mellow.

I don't have any trouble with excessive hair anywhere just a little "peach fuzz" on the upper lip and more hair on my arms than some but not as much as I've seen on some other women. When I was a teenager there was a little extra hair but it was nothing that Nair Hair remover couldn't handle. My Spanish friends have more excessive hair then me.

I have bone loss also and was diagnosed with ostepenia. I take calcium supplements w/ vitamin D plus once a week, I take a pill called Actonel to stop bone loss and regain some of what was lost. Since I live in South Florida I see many shrunken little old ladies that are suffer with the results of bone loss. Every time I freak out and go on a calcium rich eating spree along with the calcium supplements and Actonel.

As for Endos....I have sort of a joke and my gynocologist thinks I'm a riot. I have stand-up routine for him..Ok .. here goes the joke. You know how someone has a 25 % chance of getting CAH? Well.....You also have a 25% chance of getting a good Endo ! Funny right ? or just stupid? I have a good Endo but I had to go through 3 lemons to get to him. Here is a joke that that some med students told me. (Question) "What's 18 inches long and hangs in front of an asshole? (Answer) A stethoscope."

Betsy, I'll have to look into that low blood suger in the morning. Sometimes the health issues aren't related to CAH anyway which is a good thing but I know that an adequate supply of cortisol (my case hydrocortisone) is needed to get the blood suger going and that's what got me wondering. Maybe, I might need a little more hydrocortisone. I see my Endo in Sept. and it's something to ask him about.

I was in the hospital for something unrelated to CAH but all the doctors and nurses wanted to just ask me about CAH and it seemed like what I was actually admitted for wasn't the main interest even though it was just as life threatening as the CAH which can be corrected by making sure the body has enough cortisol to function properly and to also to supress the excessive androgens (that cortisol does double duty).

The medical team was good and they were honest and just to be on the safe side I was admitted for observation. The last place someone with CAH wants to be is going into a hospital, I haven't had good experiences in those places but this time it was different because I didn't have any expectations that anyone was to be trusted or on my side.

I was lucky though that after I explained what CAH was to the nurse that I got. CAH ...lack the ability to make cortisol ...we need cortisol to live and to fight physical stress such as a sickness or accident also the lack of cortisol causes the androgens to become excessive which is the reason for excessive face/body hair, deep voice and we take medication like hydrocortisone to correct this too. The nurse bless her stated "Oh, this sounds similar to Addison's disease (smile)." I thought.... Thankyou.. Thankyou God for a nurse that was actually on the same page as me.

The doctors weren't sure if what I had was being caused by the CAH or what. I knew it wasn't (OK pretty sure) because if it was I would be barfing my guts out in an adrenal crisis. The Endo on call agreed with me that the CAH had nothing to do with the reason I was in the hospital and was of no concern and was being well managed by my Endo at the time. When I left the hospital the day nurse told me that "I was the most normal person on their floor." I replied "Yes, I am " as I waited for her to take the I.V. out ( All the while thinking ..we are normal and there was no reason for you S.O.B.'s to slice me up without my permission, it's your world and not mine).

I give Props to my adrenal gland even if it does lack the ability to make cortisol on its own because it lets me know soon that I need to give it more cortisol, The barfing is of Olympic caliber and I turn a nice pale gray color you just got to respect a medical condition that gives you clues before it trys to do you in with an adrenal crisis. Once I was so weak that I almost choked on my own vomit, I was not that concious to what was going on and I believe it was God that turn my head to the side so I wouldn't choke to death.

I was at a happy hour today at an Irish pub by the ocean. I ran smack dab into a merry band of paramedics. I was trying to tell him about how in an emergency I needed hydrocortisone to live. His response was well we are always just five minutes away from a hospital anyway and I'm like DUDE in those five minutes I could be DEAD ! I happen to know that they carry either hydro or pred to help with respiratory patients. He didn't seem to concerned and I hope that I don't crash in his zone. He might of drinking awhile before I got there and mostly that helped in his lack of interest but even the sober paramedics were like we never heard of that and we wouldn't know how to treat it. The scariest thing of all is that I'm 99% sure that the ER doc although well intentioned would have to take time to look up how to treat CAH in an emergency situation also meanwhile time is life ticking away.

Cheers,

Aimee Morgan