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Old 03-07-2011, 05:38 AM   #4
accessn12 accessn12 is offline
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Re: Pituitary Resistance to Thyroid Hormone

I'd be happy to help you and your daughter along on your journey. I've looked for many years and although I know of a few other people who have RTH, I've never been able to make contact to speak with them. Mostly, I just research.

I'm 52. The diagnosis of RTH was finally suggested when I was in my 30's, treated as such with beta blockers and confirmed about 3yrs ago. It's not a common disorder and I was treated for all kinds of things along the way but mostly just left the doctors scratching their heads. As a child, I was diagnosed as being hyperactive - what they'd call ADHD now. They tried tranquilizers and phenobarbital which didn't slow me down a bit. They finally gave my mom the tranquilizers and told her good luck. We both survived. Although I did get sick more often than my sisters did, I actually had a pretty good childhood bopping around within my warped sense of normal. I think children are a lot more adaptable than adults. It's also not been attributable to fatalities or grave illness so there hasn't been much in the way of studies on how it actually feels and none on the long term effects. The researchers seem more interested in looking at the fascinating genetic basis of the disorder and how things work on the molecular level.

Atenolol does help control my symptoms. No, it doesn't fix everything but I still love it. I've been taking beta blockers for almost 20yrs. I'm a little curious as to the reasoning for only 1 or 2 yrs??? What type of doctor is treating your daughter? Has he/she ever had experience with RTH or ever even seen a patient with it? I've never seen one who has although I have a wonderful doctor now who was willing to learn and knows how to listen.

Symptoms can wax and wain. There'd be times when the only sign was a rapid heart rate. Those periods could go on for years but stress can often bring out the tremor and a few other symptoms. Every major long term exacerbation of symptoms for me has followed certain viral infections. I think there's a relationship that causes something to shift. I've also learned not to do anti-thyroid meds or systemic steroids. They can be a real trip. Another no-no is removing the thyroid to try and treat it. It'll grow back in RTH although I never tried it. I read about one woman who had hers removed 5 times and her daughter 3 before they stopped trying. They also don't recommend radioactive iodine treatment. I've had that suggested many times by doctors who don't know any better. Atenolol is currently the mainstay of treatment. They've had some success by suppressing the pituitary with TRIAC, d-thyroxine (neither of which is available in the US) and Cytomel. I've been taking Cytomel for 3yrs along with the atenolol. I feel I've benefited from it.

It's an annoying disorder but very possible to live with if you know you have it. It's when you don't know for sure what's going on that it'll drive you bonkers but I really didn't start doubting my sanity until I was an adult. A lot of doctors doubted it too but I always knew in my gut that there was a reason for it.

I do wish I had known a long time ago cause I do suffer from some long-term consequences that I strongly believe that proper treatment and monitoring would have prevented. I think your daughter will do fine and I'll be happy to help in any way I can.

Helen

Last edited by moderator2; 03-07-2011 at 06:33 AM.

 
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