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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Hi Kim,

We visited Dr. Wong for the first time in April and my son also has an elevated TSH at 7.13. His T-4 was in the low normal range at 7.7. I have Hashimoto's and have been on synthroid since last year (it started acting up when I was pregnant with my second child). Due to the history of thyroid disease, Dr. Wong thought it was important to start Avery on synthroid as well. He has just finished his first 4 weeks and is going to have his blood draw this week to be reviewed by Dr. Wong. We haven't started steroids yet but will be once we hear back from Dr. Wong. She wanted to start him on the synthroid before starting deflazacort. I wish I could give you more insight but since this is so new to us as well, I don't have any comparison or history to share.

Did she have the endo at Cincinnati review your son's results as well?
Hi Michelle, I honestly don't know what Seph's Thyroid level was, but I do not that it was not terribly elevated when we began Synthroid. It took us about 6 mths to find the right does to get his thyroid right and we are at 100mcg!! Which was much higher than anyone expected. I can honestly say that I am thrilled that he is on synthyroid because of what it is doing to the CK levels. We had an initial drop from about 19000 to 9000. WE then began playing T-ball and it went up to 31K (our highest ever) and then leveled off around 15-16K. We are actually in Cincy now and just had the test run (and we are within 2 weeks of finishing Tball this year) and his CK was 12000. All of us were stunned! His energy is great and one can only surmise that the lower the CK, the slower the individual cells are dying. For us, it has been a great thing!
Lori
www.caringbridge.org/visit/seph
This is absolutely incredible for me. I have literally found answers to my sons health issue over night !! Without this message board I would still be fretting wondering how to help my 16 year old son. He has been having major issues with a high rate with normal heart function, normal thyroid test with all the thyroid symptoms. We put him on perindropril which only helped a little for a few months. His heart rate is raising again and having much more sever digestion, burping, hot head dizzy and jumpy eyes symtoms at night after dinner. I was told just this last Monday there wasn't anything else we can do. We live in Alaska and up until last year Luke was doing great. Living in AK has had the challenge of the doctors giving old worn out advice for DMD or not knowing what to do. THANKS PPMD and everyone joining. We are much stronger as a group : )
I know having thyroid problems is common... but I wonder...is there a higher rate of DMD boys or their moms with thyroid issues? If there is a connection between CPK levels and synthroid then does anyone know if studies been have been conducted about this connection? I have been on synthroid for years, certainly during pregnancy. I wondered then if/how synthroid was effecting my babies but my doc reassured me it wasn't an issue.

Does anyone have any information on this?

thanks,
cheryl
I had been on synthroid for about 2 months when I got pregnant with Justin. i took it my entire pregnancy and for about a year afterwards before i was able to come off of it.

--Samantha
Cheryl,

I often wonder if there is any correlation too. I was actually diagnosed with Hashimoto's in 2000 and Avery wasn't born until 2004. I had infertility issues and while going through preliminary testing, they discovered the thyroid disease. My levels were still within the normal range so I never had the need to start synthroid. It wasn't until I got pregnant with Noelle that my levels starting going haywire. Although I don't know of any studies that have been done, my OB (who is also and endo) told me that it is fairly common for thyroid disease to present itself during pregnancy. I was very nervous about starting synthroid during pregnancy, but was informed that it was more of a risk not to start treatment. I still wonder just how safe it is, especially since I'm nursing, but once again I've been assured that it is perfectly safe to nurse without effecting my daugther.

On a side note, I've never had my CK level tested, but I'm wondering now if I should....
I haven't had any problems with my thyroid, even in pregnancy. If I think back my son probally needed synthoid when he was 7-10years because he was severally under weight but that was 9 years ago, I changed his diet and now its been since Dec. Luke started losing weight again with many other symptoms. But this doesn't mean that thyroid issues aren't common, which just bay view everyone discussion seams to point in a common issue. Last year I went to the connect conference and that was the first time I heard about issue with the indrocrine system in all these last 12 years. I know there is a doctor(s) researching this. I will look back in my conference book to see who it is and get their contact info. I am like a dog with a bone : ) Here is something else, we have done the whole all natural thing with Luke, he has NEVER been on steroids, but this new delflazacore, HMMM, wish he had it then.
Very interesting... I have been on Synthroid for about 4 years now, it all started after the birth of my second child. I don't think Christian ( 10 with DMD) has been tested ,but he is one that it is hard to keep weight on him, maybe hyper-thryroid rather than hypo-thyroid... My birth realitves all basically had thyroid issues as well...very interesting I must say.
Hi Lee Ann,

Would you mind letting me know what you find out after Avery's next bloodwork? We should be getting Cole's prescription for synthroid sometime this week. He's had his TSH checked two or three other times since his diagnosis (two years ago) and this was the first time it's been elevated. I've never had any problems with my thyroid. Thanks.....
Hi Kim,

I had Avery's bloodwork done last week and Dr. Wong was supposed to review it today or tomorrow and get back to me. His pedi's office told me what the TSH and T-4 were but I was driving and not able to write down the numbers. I am waiting to hear back from Dr. Wong and will let you know what happens.
Thanks Lee Ann!
I know that when Seph was diagnosed with low thyroid, Dr.Wong and Dr.Rutter (Endocrinologist at CCHMC) were looking at WHY Synthyroid is lower the CK and if there was a higher than normal incidence in DMD boys. Honestly, I never followed up! Sorry! I did want to put Seph on Armour bio-identical thyroid (which I still recommend for anyone without DMD as synthyroid is synthetic), but Dr. Wong is not familar with it and I just didn't want Seph to be a guinea pig. Now I am glad because of the positive effect synthyroid is having.
Lori

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