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Old 06-22-2007, 09:24 PM   #1
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Question Thyroid Hormone Resistance

I was told I have thyroid hormone resistance. I would appreciate info on this condition. What causes it? How is it treated? It is dangerous? What signs and symptoms can one have?

Please see "T3 Cytomel...My Experience" by Uncoordinated, on the fibromyalgia board, or topic on "thyroid hormone resistance". You will find more info about me, which maybe helpful to you in answering my post.

Thanks!

Last edited by binks; 06-23-2007 at 10:59 PM. Reason: forgot something

 
Old 06-23-2007, 05:20 AM   #2
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Re: Thyroid Hormone Resistance

Hey binks,

Thyroid hormone resistance is a very difficult diagnosis to get. A lot of docs don't even know it exists or what it's really about. How'd you do it? What kind of labs and tests did they do? I glanced back at some of your other posts. I thought you had been diagnosed with hashis???? Do you have antibodies? Almost no one with RTH has antibodies. It's a very rare syndrome. Did they say you have PRTH or GRTH? There are also some docs out there that attribute certain things to it when it's not actually the case. RTH is a true genetic mutation with very specific diagnostic criteria.

Not terribly dangerous unless you actually have symptoms (some people go thru life without even knowing they have it) and it isn't treated. Only one person has ever died from it being a contributing cause and they had a double mutation and pneumonia. Myriad of symptoms and presentations and pretty much the treatment is tailored to an individuals needs. I got tons of info about it. How bout posting your labs and how they came about this diagnosis.

Helen

 
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Old 06-23-2007, 09:12 AM   #3
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Re: Thyroid Hormone Resistance

I body does not seem to respond to normal levels of T3. I have to take higher doses, as reflected by lab values in order to have an even average response and start to feel a little better. I know Dr. Lowe has a website which briefly explains thyroid hormone resistance. What info do you have. I'd like to read it. Thanks for your input.

binks

 
Old 06-23-2007, 09:18 AM   #4
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Re: Thyroid Hormone Resistance

Quote:
Originally Posted by accessn12 View Post
Hey binks,

Thyroid hormone resistance is a very difficult diagnosis to get. A lot of docs don't even know it exists or what it's really about. How'd you do it? What kind of labs and tests did they do? I glanced back at some of your other posts. I thought you had been diagnosed with hashis???? Do you have antibodies? Almost no one with RTH has antibodies. It's a very rare syndrome. Did they say you have PRTH or GRTH? There are also some docs out there that attribute certain things to it when it's not actually the case. RTH is a true genetic mutation with very specific diagnostic criteria.

Not terribly dangerous unless you actually have symptoms (some people go thru life without even knowing they have it) and it isn't treated. Only one person has ever died from it being a contributing cause and they had a double mutation and pneumonia. Myriad of symptoms and presentations and pretty much the treatment is tailored to an individuals needs. I got tons of info about it. How bout posting your labs and how they came about this diagnosis.

Helen
I body does not seem to respond to normal levels of T3. I have to take higher doses, as reflected by lab values in order to have an even average response and start to feel a little better. I have a lot of fatigue and muscle pains. My blood pressure and pulse are within normal range now, or at least close to it. Previously, they had been low. My doc feels my adrenal issues have influenced the thyroid resistance. I know Dr. Lowe has a website which briefly explains thyroid hormone resistance. What info do you have. I'd like to read it. Thanks for your input.

binks

 
Old 06-23-2007, 09:34 AM   #5
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Re: Thyroid Hormone Resistance

There's a lot of highly credible research out there on RTH. Most of it is highly technical. I personally do not believe that Dr. Lowe's theory's are completely in line with the research on RTH. One of the top experts who originally discovered this syndrome has published a lot on it but you might want to start at: [url]http://www.thyroidmanager.org/Chapter16/16d-frame.htm[/url]

Another interesting study was done at NIH: [url]http://www.annals.org/cgi/content/full/123/8/572[/url] also has a lot of good information in it.

I've got tons more info but I would have to get some of them approved before I could post them. You can do your own research though by searching for "resistance to thyroid hormone" and look for studies and articles done by weiss, refetoff or beck-peccoz. They are considered among the top experts in the world on RTH. That should give you a start.

 
Old 07-02-2007, 01:11 PM   #6
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Re: Thyroid Hormone Resistance

Hi,
My Endo is going back and forth about PRTH with me, but as said by other's, it's extremely rare and hasn't been verified with me yet. I am curious as to what your labs look like? I would like to compair them with my own if you would allow it. My TSH is abnormally high, and my T3 & T4 are not suppressed, they are mid to high levels. As my endo tells me it's as simply put that my pituitary isn't listening to my thyroid so thus it doesn't stop. My TSH right now is 34, with no hypo symptoms since I am on 100 levoxyl. I get hypo symptoms around 75 TSH.

Thanks for any info you are willing to share with me.
Liz

 
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