Graves - High TSI

[u449534]

I was diagnosed with Graves 20 months ago.  I have been on various doses of Methomezole for the 20 months all indicators have normalized with the exception of TSI (490-520).  My endo suggests RAI or perhaps surgery.  My question is with a Thyroidecomy, do the symptoms I am experiencing now (extreme fatigue, TED, depression) subside and will I be able to control my weight after?

[goolarra]

I agree...trying to reduce stress is in itself ...stressful!  LOL  Obsessing about your stress level is probably worse for you than the stress level itself.

Not everyone's antibodies go down.  I believe it's somewhere around 30% that go into remission.  A surgeon would be a second opinion, albeit one with a stake in what you decide.  

[u449534]

No, I haven't but it's a good suggestion.  He seemed reluctant to refer me to a surgeon but also said it is tricky because other indicators / results have responded well to the medication just not the TSI levels.  So I get frustrated with the lack of options and nothing that seems to be able to influence the TSI other than "reduce stress" or "try yoga".  As many working single parents with teenagers, reducing stress is next to impossible.  Thank you again for your feedback and advice, I truly appreciate it. :o)

[goolarra]

There are only so many options he can offer you.  It's pretty much meds or a "permanent" fix.  Most people seem to get to a point where they either get tired of the meds or they stop working.  

Doctors usually want to remove and/or irradiate as much thyroid tissue as possible with Graves'.  I've never heard of anyone having a PT for Graves'.  Removal of the tissue is the only thing that will send the antibodies into remission.

A good endo can really help post-surgery.  If you can really work with your doctor, he orders the right tests and is open to using both T3 and T4 meds, it will be a lot easier to get to an optimal dose and feel well on replacement.  Have you had a talk with him about how he treats his hypo patients?    

[u449534]

Thanks for your reply.  My endo seems as though he knows what he is doing.  I am probably not the best patient as this is the only illness I have had - I'm 44.  So, I want him to alter the medication to help me feel better or offer better solutions, which i guess I have to accept that there are none at this point.  We did try to lower the dosage about a year ago, and my labs went crazy and I felt pretty bad.  

Is removing part of the thyroid an option for Graves sufferers?

[goolarra]

Your FT3, at 3.2, is right in the middle of the range.  Rule of thumb for FT3 is upper half to upper third of range.  So, it could be a little low as well.

Do I think you're overmedicated on methimezole?  Tough question.  I think there's room in your labs to decrease it a little and see if that makes you feel better.  However, with TSI still so high, I can understand your doctor's reluctance to lower it much more.  Surgery is a hard decision.  You will be hypo for the rest of your life, and that has its challenges as well.  TED is a big concern if you don't have surgery.  

Do you have an endo who works WITH you well?  

[u449534]

Thank you again, Triiodothyronine, Free, Serum which i think is the T3 is 3.2 (2.0-4.4), I've been on Methemezole for 20 months - began with 30 mg per day and have been down to 10 mg for about a year.

[goolarra]

Your FT4 is a little on the low side.  It's at 44% of range, and many of us will feel hypo until FT4 hits 50% or just a little higher.  Unfortunately, your doctor didn't test FT3, and that's the test that correlates best with symptoms.  You should be sure to request FT3 next time.

How long have you been on methimezole?  

[u449534]

Thank you for responding.  This forum is encouraging.  Recent labs are T4 free direct is 1.24 (.82-1.77), TSH is 1.40 (.450-4.5), TSI 498 (0-139).  Do you think I am over medicated on Methemezole?  Should I opt for the surgery?  Just frustrated with medication and still feeling bad.  Thanks

[goolarra]

With the exception of TED, the symptoms you list are symptoms of hypO, i.e. overmedication on methimezole.  If meds are adjust properly, as FTB4 said, you should have neither hypo nor hyper symptoms.  Do you have current labs to post?  If so, please include reference ranges as they vary lab to lab and have to come from your own lab report.

Your antibodies remain high, and that exacerbates TED.

Once thyroid meds are adjusted properly (after surgery), you should be able to be symptom free.  However, meds adjustment is a PROCESS.  It takes time to get meds right.  After each meds adjustment, we have to wait 4-5 weeks for the dose to reach its potential in our blood, retest, re-evaluate symptoms and repeat until we get it right.  I've had an easier time maintaining my weight since being on meds than I did my whole life.  

[FTB4]

After removal of your thyroid you will become Hypothyroid instead of Hyperthyroid, Hypothyroid symptoms include Weight Gain, Fatigue, Depression, Muscle/body aches, sensitivity to cold, and dry skin. are a few and I am sure I missed a few, this does not mean you will have all, but for a period after your thyroid is removed, you will not be on Hormone replacement Therapy, so during the time of removal and when you get your levels stabelized you will experience Hypothyroid symptoms. Best Regards FTB4