Graves and muscles

[jannalynn]

I was recently diagnosed with Graves Disease, very high t4, t3 and very low tsh, high antibodies, uptake and scan 90.2%. I am currently on beta blockers and methimazole for 1 month. My heart symptoms, high blood pressure and pulse of 120-160 are now close to normal but I still have other symptoms, hot all the time, extreme sweating, insomnia and worst of all very intense muscle pain especially in my thighs but in the rest of legs and arms too. It seems to me that this muscle pain is getting worse every day, so bad to the point that I am in tears. I can't walk up stairs without holding railing, can't stand up from a squatting position, if I stand for very long my legs start uncontrollably shaking, I have to put the car in park when stopped at red lights because I can't keep the brake down from pain and leg shaking. Sorry this is such a long post but my question is has anyone else experienced this and what helped? My endo just keeps saying it will get better.

[cmropen]

Consider getting a second opinion or searching for a new doctor if your endo is not listening to your concerns.

[jannalynn]

Thank-you cmropen, as I stated above I am seeing a different endo next week to get a second opinion about everything.I am really trying to see if anyone else has experienced the worsening muscle pain and weakness and if they have any that possibly gave them some relief while waiting for methimazole to work.

[gimel]

Yes, that is Free T3.  I think it is ridiculous that the doctor doesn't want you back for tests until December.  Your Free T4 and Free T3 are more than 2 1/2 times the upper limit of the reference ranges and you feel terrible.  It is good that you are moving on to another doctor.  Please let us know how that works out.

[jannalynn]

Thank-you for your response. Do you happen to know, does methimazole work for everyone and it is just a matter of getting the right dosage and how long it takes to get there?

[gimel]

With that level of Free T4, and likely Free T3 also, it is no wonder that you are still having hyper symptoms.  I know that it supposedly takes weeks to months before full effect of the methimazole, but after a month your Free T4 is still way above the range, and you are having all those symptoms.  I think it warrants another call to the Endo to relate all those symptoms you mention, and just how bad you are feeling, and ask if the dosage can be increased.  

In the future I would also make sure they always test for both Free T4 and Free T3.  It is important ot know both.  

[jannalynn]

Thanks for the response. I looked back and it doesn't look as though he ever checked my T3 or free T3. My tsh is .006 with no change, my T4 went from 22 to 19, uptake and scan was 90.1%, there's alot of other stuff on there as well but I see no T3's. He knows how awful I feel and just doesn't seem concerned, just says everything will get better pretty quickly. He is not good at explaining things and doesn't really ask me questions or listen. He mostly just has me come do labs and then sends me a message as to what to do or calls. He wanted me to immediately do RAI but I refused and asked for the meds. He now doesn't have me scheduled to return for more labs until the first of December. I am seeing a different endo for a second opinion about it all next week. I am just very concerned that the muscle pain and weakness is continuing to get worse it seems every day.

[jannalynn]

There is a lab called triiodthyronine free, would that be T3 free? The result of that is 12.9 (the ref is 2.0-4.4)

[gimel]

What is your methimazole dosage?  Have you been tested since starting the methimazole?  You should test for Free T4 and Free T3 (not the same as Total T4 and Total T3) every time you go in, since they are the biologically active thyroid hormones.

[jannalynn]

My methimazole dose is 20mg per day. I was tested again last week, my free T4 went from 4.44 to 4.26 (ref is 0.82-1.77) but I don't see any free T3 on my labs.