I have charcot marie tooth disease and have recently had a part then a total thyroidectomy due to cancer. Need help with meds.HELP.

[Zoobidge]

Was on liothyronine. Think I am refusing rai. And have just been prescribed levithyoxin. Am worried it will reck my muscles even more. !!!

[marram]

I think you may well be right, you have enough to cope with already. I know that they start people off on liothyronine nowadays and then move them onto Levo but to be honest anyone without a thyroid is better off with at least some T3. You would be quite reasonable in asking to stay on the Lio because of your muscle problems.

I had tremendous muscle pain on Levo, and I DON't have to cope with Charcot-Marie-Tooth syndrome.

Are you still under an oncologist or have you been transferred to an endo?

Definitely fight to stay on the Lio.

Marie Xx

[Clutter]

Hi,

I agree with Marram, reject the Levothyroxine (T4)( and stay on Liothyronine (T3) if you can.

I was switched to Levo after TT and RAI 2 years ago. 18 months of being mostly bedridden until I self medicated with T3 and am now recovering on a combination of T4 and T3.

It's worth fighting hard for this.

[Zoobidge in reply to Clutter]

Hi. Thanks everyone, I am on 175 of thyroxin and 20 of t3 , my muscle weakness is getting worse. , maybe I need to drop some of the t4. my free t4 levels are quite high. although surgeon was happy with them oncologist isn't. I am going to see my neurologist to see what he says. think I need a endo too. xx

[Clutter in reply to Zoobidge]

Zoobidge, can you post your thyroid results with the lab ref ranges (the figures in brackets after your results) as it helps members to advise.

I only recently discovered that post thyroidectomy and RAI my FT4 and FT3 were very elevated on 200/175/150mcg for 7 months and I felt very ill indeed. On 125mcg FT3 dropped below range. Lost a lot of muscle mass which I haven't regained but that's probably because I'm still not very active. I didn't feel well until on T4+T3 combi and am currently taking 75/100mcg T4 + 40mcg T3. Perhaps your T4+T3 proportions need tweaking.

[DawnD]

I have CMT1a (only diagnosed last year - long story!) and have been on thyroxine for 21 years now and have not noticed any muscle pain.

[behappy1]

Sounds like your having a very rough time. I just wanted to say I hope you get sorted and feel better. X