An update - Bilateral Adrenalectomy

[TracyL1975]

I have switched endos to a gentleman at U of M. He came highly recommended by CARES as well as the endo who I see at the weight control program I am in.

Several months ago, the U of M doctor readjusted my dosage to 25mg a day of hydrocortisone and placed me on florinef. He said this dosage should be sufficient, and if it didn't work, then he would want me to pursue bilateral adrenalectomy.

During the time I was on this dose, my weight rose 26 lbs. (16 at the time of the visit). He was shocked by this, indicating my adrogen levels are uncontrollable with a reasonable dosage of steroids. He then put my next appointment well into march..

What sucks about this, from the 26 to this day, I have gained an additional 10 lbs, (slipping into my well loved treatment for my weight -- anorexia, which ISNT working). I hurt all of the time (bone pain mostly), my face looks horribly puffy.. It has also had negative impacts on my emotion, mood and everything else. I couldn't even fight off a simple cold, which turned into severe bronchitis, requiring a cortisone shot and strong antibiotics.

The surgery sounds scary of course, but both my weight control doctor as well as my primary care doctor think that it will do wonders for me.. As my primary care doc puts it -- things suck for you badly, and the adrenals are the source. if I were you, I would do it in a second.

Any thoughts?

Tracy

[apple]

Hi Tracy

I think it is really smart of you to seek advice on this. It really is a serious matter. I suggest that you PM Betsy about this. I don't know if she reads the forum anymore, but she may answer your PM.

I hope things work out for you. I don't have adrenal problems myself, just kidney issues and sleep disorders here, and so I don't have any advice for you about AH issues. I know it is a real bear though.

insert cute friendly icon here

[Sunshine1]

Dear Tracy,

Happy New Year.

As you know I was under the care of the U of M for 18 years and that place was where they di the clitorectomy, vaginoplasty, and urethroplasty.

Plus, being used as a teaching tool for students - Every three to six months was a crotch check (genital exam) and by some strange man, woman or group and then the Endo as well. The surgeon came in when I was ten and made me slide down on His finger to dialate his surgical creation. They have since given consideration the trauma that these experinces do to someone and I will never be right from any of that - theraphy doesn't help and was fine the way I was born ...vs being corrected into something and having to run the gauntlet of men and woman.

They since aplogized and hey that does mean something BUT the one thing that was done right well not really but close enough was the dosing and I was wondering why you aren't taking Prednisone? and I was also wondering if they checked your thyroid?

I have Simple- Virilizing CAH and was on the pred my whole life/Endo- the Dept Head with the only bad part being later after that one left.... this Endo fellow someone who was making a career out of being an Endocrinologist and her Professor decides to put me on 20mgs of pred which was way to much in what it does emotionally and physically but 7.5 mgs of pred works fine.

I did the hydrocortione thing / a new endo for 4 years in my 30's in another state but that stopped working and down I'm back with the pred. I always had bordeline Hashimoto's thyroiditis and that is helped by the synthroid.

I would ask the Endo about the prednisone before any surgery and I would write down the pros and cons ...then go with faith. I will always be tramatized about what they did to me but they do mean well besides decades of research and forever still learning. I don't thing they would steer you wrong.

The CAH is hard itself and if this was me? I would want to talk with people that had it done- maybe cares foundation has someone or the U of M that would be willing to talk with you? Also, would this be something like having addison's disease if they removed the adrenals?

Good luck.

[fraulein_Maria]

[QUOTE=TracyL1975;14361]

he would want me to pursue bilateral adrenalectomy.

As my primary care doc puts it -- things suck for you badly, and the adrenals are the source. if I were you, I would do it in a second.

Any thoughts?

>>> i think that Kalinda (sp?) had one of those. i would ask her.

[TracyL1975]

Sunshine1, I understand all too well about the emotional wounds. It never goes away.

I remember being on predinsone many years ago, which was no help. I don't know. The course of treatment is scary, but at this point, I toss my hands up in the air. Now even my weight is uncontrollable, even via my own personal methods to control (ie eating disorders, etc). I do not know if this surgery will work, but its the one glimmer of hope, when everything else is spiraling beyond my control.

The doctor says i will be managed as if I have addisions, as addisions is far more managable. He says I have such a severe case of CAH, that it should be considered unmanageable in itself.