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Low thyroid

Hi. I wasn't really sure what category to put this under, so this seemed as good as any! I was hoping to get some input from anyone whose son has been treated for an underactive thyroid. When my son had bloodwork done at Cincinnati in May his TSH came back slightly elevated at 4.76, normal range being 0.51-4.00. Dr. Wong wanted us to check the level again in a month and if it was still elevated do a trial of synthroid. We checked the level again this week and it came back at 4.54. We just heard from the nurse today and they want Cole to start synthroid and re-check TSH in 6-8 weeks. It was explained to us at clinic about the dramatic drops in CK they've seen in boys on synthroid, but in all honesty I'm quite hesitant to start this simply because his level is barely elevated. I did search the message board and all the posts I found mentioned levels quite a bit higher than this. Anyone out there who's done synthroid with such a borderline level? If you'd rather you can also email me keichelberger@consolidated.net. Thanks

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Permalink Reply by Kimberly Foernsler on August 13, 2008 at 10:22am

I'm a little in shock after reading these. I have recently been diagnosed with Graves Disease. I'm actually hyper not hypo. Kory (my son with DMD) passed away last year at the age of 16. I think I've had the Graves for years and years but no doctor had the sense to know what was wrong with me. I developed a large goiter in the right side of my neck and it was discovered by a doctor 7 years ago he called it a "medical mystery" . I had actually been to the doctor because of a intense headache that came and went for about 20 days. He sent me for a MRI of my head to make sure I didn't have an aneurysm in the brain. Never checked my neck or thyroid. I also have the protruding eyes more so on the right where the goiter is located. My mother also has Graves Disease (diagnosed last year), I think my daughter (23) has it, and my sister is in the process of getting checked (we are pretty sure she has it). I wonder if Kory had it because of the huge loss of weight? He weighed 58lbs when he passed away, his heart rate was high (like mine), which are symptoms of Graves. Kory took a beta blocker for 5 years to slow his heart down but it really never seemed to get low enough to be considered normal. Some doctors are really good, like my new doctor that discovered the goiter and right away tested me but some doctors are not so good. Unfortunately, I think that some of Kory's doctors should have done a better job and Kory may have still been here today. Kory wasn't diagnosed until he was 6 but it wasn't because of the lack of me asking questions over and over again to his doctor. I took Kory to a different doctor and the first visit he told me that he felt strongly that Kory had muscular dystrophy. Within a month we had the DMD diagnosis.

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Permalink Reply by Ivy Scherbarth on August 27, 2008 at 1:10am

I'm a carrier and I've been hypothyroid all my life, particularly since puberty. I have been on levoxyl (generic synthroid-- I had nasty experiences with the name brand synthroid) since 2000. My mother has Hashimoto's and at this point confirming her carrier status is a formality. Has anyone with a PhD made this connection??? I thought that Hashimoto's in particular was very rare.

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Permalink Reply by Aimee Ealy on January 31, 2009 at 11:39am

Hypothyroid is common in many people without DMD. Synthroid does not have any serious side effects when taken correctly, and TSH level should be checked frequently at first and then yearly. Decreased thyroid function can cause many things, from growth issues, weight gain, headaches, joint pain etc. I am on synthroid and it has made a huge difference. I would definetly start it without any concerns, even with a borderline level.