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abatie 10-02-2011 01:33 PM

Thyroid testing and CMTC
We were told to have Becca's thyroid level checked regularly when she was diagnosed with CMTC. So when we were at our family doctor a couple of weeks ago I brought up that it hadn't been tested for two years and that we were supposed to have it tested regularly. She did order the test but then wanted to know why. I didn't know why. I posted this question to the CMTC group on FB and nobody knew why. Does anyone here have an idea?

missy 10-03-2011 12:01 AM

I would think that since there are other abnormalities associated with CMTC that thyroid function checks would be a precaution.


PS/// should be a simple blood test, right?

abatie 10-03-2011 01:02 AM

You are right Missy it is just a blood test. Our doctor doesn't want to do it again unless I can give her some information why. From what I have found some families have it done and some don't. I think that initially it was done because of the temperature issues because I think that because of the CMTC she already has problems with body temp. but I think that can also be affected if your thyroid isn't functioning. I am hoping to ask more people about this issue this summer because we are planning to go to DC for the CMTC conference with the group from the Netherlands. We are also struggling with local doctor issues because our research isn't good enough but she stopped researching because she was finding the same information that is also very limited. I have done a lot of research and I feel like I know a lot about CMTC and I have even been giving advice to some families that are just starting down this road. I don't know what to do.

cbasser 01-17-2012 09:24 PM

I've never heard that about the thyroid. Please keep us posted. We are getting no where in our area. :(

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