[flora]

#1060605

Hi Everyone – Since my diagnosis in March 2013, I have been on the Tapazole teeter totter, a little up and a little down on my TSH results along the way. Although Free T4 seems to be the recommended basis for dosing, doctors here just use TSH, and labs will not even give Free T4 levels unless the TSH is out of range. My TSH is never wildly out of whack (last month, it was hypo at 5.53 – lab normal range: 0.27 to 4.2), but it continues to shift around as we gradually adjust dosages. Last month, we brought my dose down to 22.5mg per week, from 25 mg per week, to try and head off going more hypo. Over my two year journey, as I have mentioned in other posts, many things thankfully have improved. The last hurdle for me, though, seems to be achy joints, muscles that are sore and not as strong as previously, and feeling 100 years old. I have read that healing of muscles begins when levels stabilize – could even mildly shifting levels be hindering the healing process? I know that Graves is different for everyone, but can anybody share their experience with me, re: how long it took to shake off the aches and pains, and rebuild muscle? months? years? Doctor and I would like to stick with ATD therapy for now, as remission may be possible for me. Just wondering meanwhile, what others have experienced with timeframes in getting over muscle/joint aches and pains, and getting muscle strength back, on their journey – Thanks!
flora

[Kimberly]

#1183594

Hello – My case was unusual in that my Graves’ was caught during routine testing from my primary care doc, so it was picked up fairly early. I was back to my walking routine in about 8 weeks or so. Hopefully, you will hear back from others as well with their experiences.

I would really encourage you to push for Free T4 testing. The U.S.-based endocrine societies note that “Serum TSH may remain suppressed for several months after starting therapy and is therefore not a good parameter to monitor therapy early in the course.” It’s no wonder that your levels are bouncing around if your docs have been relying solely on TSH.

In some patients, joint aches/pains can come as a side effect with the methimazole, and in others, there could potentially be a separate condition that causes these issues. I would definitely mention this to your medical team – hopefully, you can get some relief soon.

[flora]

#1183595

Thanks, Kimberly – like you, I hope others with shifting levels, whether due to dose changes in their ATDs or in their hormone replacements, will chime in, too. It’s encouraging to hear that aggravating symptoms (in my case, mainly muscle and joint pain – hips/legs) do subside, after a time, once healing happens. I’m just wondering if the process can take a while (always longer than we would like, I know!). So glad you got there so soon! Yes, it’s frustrating that TSH is the benchmark here. Doctor has requested FT4, but the lab will not provide it, unless TSH is out of range – not helpful to people like me whose TSH keeps moving around mainly within the range! Hope to hear from others, with experiences like mine, with how long it took them to feel less than 100 years old again

[Kimberly]

#1183596

Hello – When it comes to lab work, *you* are the customer! The lab should run whatever your doctor requests.

See if your doctor can order two separate tests for TSH and for Free T4, instead of a TSH test that only does T4 *if* TSH is out of range. (At the lab I use, they call that one “TSH with reflex to T4”.) The reflex test is great for people who are trying to get a new diagnosis, so they don’t have to schedule another T4 test if TSH is abnormal – but it’s really not all that helpful for those of us who are undergoing treatment.

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