Late onset 21 Hydoxylase deficency

[Needhelpintexas]

I'm 41 female was diagnosed with late onset adrenial Hyperplasia or late onset 21 hydroylase deficency. I have been experienceing problems with high tryglycerides and pancrenitis. I have had this issue since about 21 and was not diagnosed till my late 30's. I have had p ... [More] ancreintitis many times or chronic many times over the past years it seems to be getting more frequent. I have been tested many times with high testoterone and have some of the diformaties they mention on the website. Facial Hair. Excessive hair growth abnormal labia. I have lived with this for many years. The problem is the medication they give me dexamethoazone makes me very fat around the stomach area and my body swells I gained over 50 lbs taking the drug along with estridiol and cortef and lipitor. I stopped taking the medication symptoms returned but my body lost the weight and I became more normal looking again less swelled. I cannot find a Dr. that even has any clue to what is going on. I was only able to have one child during my life in 1988 the OB GYN put me on dexamethozone he may have had a clue at that time what was going on but never shared that with me. after taking the drug for one year I got pregnant and had a normal delivery or I should say Csection. That was my only pregnacy in 2004 I ended up having a hysterectomy. The high levels of hormones remained and they tested me for a possible tumor on the adrenail glands. That came back negative that is when they sent me to the endocrine Dr. and he found it was Late onset 21 hydroxalase deficency. Since then they have placed me on steroids many times that have difigure my body I look like I have a inter tube around my waist fat tends to build up around my waste when taking this medication I blow up and look like a fat swelled person with fluid retetion. No one can help me. My husband started doing research and fund this site and we have decided to give it one last try. I wanna live a normal life. I lost my only child to a car accident in 1998 and adopted in 2006 I want to enjoy my child and live with my husband comfortable I just need some help getting there. You can email me or my husband at Darin_bryant***@****

[rumpled]

Low GH will also cause the weight gain and belly gain.

Dex is not a good long term medication - cortef is better but wow - to be on both would be crazy on his body. Poor thing. Likely his hormones are standing in the way of his metabolizm. Can you find another doctor to wean him off dex and put him on cortef?

[enzymelover]

  My son is on Dexamethasone and he is having the same issue with the weight gain and belly fat. He was on hydrocortisone (Cortef) prior to the Dex. but taken off the Cortef. You shouldn't need both.
He is also low testosterone, due to a tumor damaging his pituitary gland. Low GH too. He is taking Thyroxine also. The amount of weight he has gained in 7 months is alarming. He had nutritional tests done one year ago, that showed he was not metabolizing fat or protein well, due to blocked metabolic pathways. He was prescribed, by the nutritionist, to take specific supplements to correct this, especially proteolytic and lipase enzymes, with carnitine, and other amino acids, but he won't take them. I wish he could just get off the Dex.!

[rumpled]

LOCAH requires genetic testing. Have you had that?

[stella5349]

Hun - it looks to me like you need proper tests - if your liver test are coming back odd then you most certainly could have thyroid/adrenal issues.

I suggest looking at saliva testing for your adrenals and make positively sure you have Free T3 and Free T4 tests done with seperate testosterone/estrodiol/estrogen and progesterone tests.

If I stabbed at a thought... your estrogen dominant and throwing those hormones off.

[Needhelpintexas]

Stella I do know they said something about Lipids being high a few times. Theyroid panels they did tell me that I did not have over active or under active theyroid. They did do panels on those and said the theyroid was fine.