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How long have you been in remission?

Graves Remission

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#1 Keba

Keba

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Posted 14 October 2019 - 11:02 PM

I was treated with anti-thyroid meds for 18 months when my Graves went into remission. That was about a year and 3 months ago when I stopped. My thyroid was last tested in March and I don't have my exact numbers currently but they were all stable and good. Now I'm feeling a little panicky as I think it's creeping back. 
Before I was originally diagnosed I went hypo right before I went hyper. I did feel slightly hypo for the last couple of months but now that is changing. Sadly I'm in a new area and haven't found a great endocrinologists yet. I need to hurry.

 

How long did you stay in remission without meds? 

 

Also I have to say Thanks to this group, I haven't posted in almost three years and I was able to find all my information on here that will be super helpful as I have divorced, moved 4 times and remarried since last posting.

 

Thanks!!


Dx Graves 11/2016
11/2016 labs
Free T4 1.69 (0.57-1.25) Free T3 4.6 (2.2-4.3) TSH .01 (0.34-5.6)
9/2016 labs
Free T4 1.88 Free T3 5.9 TSH .01
4/2015 labs
Free T4 1.02 Free T3 2.9 TSH 1.75
Dx Hashimoto's 4/2012
Positive ANA, SMA and TgAb

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Posted Today, 10:39 PM



#2 Lovlkn

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Posted 15 October 2019 - 04:56 PM

I remember you!  Glad to hear life has gotten better for you - since your divorce.

 

Remission is a tricky thing - just having "normal labs" does not mean remission.

 

Did they test TSI and TPO antibodies as well to confirm remission?

 

I know of 1-2 other people claiming remission and they do tend to dip in and out of active disease - whether it be hypo or hyper.  One person I know of has been on Tapazole over 20 years.  Sometimes remaining on a low dose of tapazole is all it takes to remain stable.  The other has more issues with going hypo rather than hyper


Free T-4 and Free T-3 are absolutely necessary to properly dose yourself.
My experience is that 1/2 - 3/4 of range is your goal for optimal treatment

My Journey... 7 years to receive a diagnosis. TT 2004 after 4.5 years on Tapazole that had to be adjusted monthly - endo ran labs every 4 weeks. Remission was never going to happen for me so I opted for surgery to remove. Final DX by surgeon was Hashitoxicosis, TPO antibodies over 2000 and TSI 316% within the year prior to surgery. I never had a ultrasound or any lab testing to rule out cancer - pathology was negative. Post surgery I was kept hypo for many years - until I figured out how to dose my self, relying on where I fell in the FT-4 and FT-3 labs. I run TSH below range due to positive TBII antibodies. Horrible time adjusting to addition of Cytomel = patience pays off when adding this drug to the mix.

The happy ending ---> Stable dose since 1/10 Unithroid 125mcg, Cytomel 12.5mcg - labs I can live with.

None of the information on ThyroidBoards.com is intended to diagnose, treat, cure or prevent any disease. Information shared is based on my personal experiences and should not be considered medical advice. Please consult a physician before adjusting any medication.

#3 Keba

Keba

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Posted 15 October 2019 - 07:21 PM

Thanks Lov, I remember you too!

 

My last test did not test for antibodies, so that is definitively something I need to address at my next appt. I have felt more hypo then hyper until recently. So far hyper symptoms aren't consistent but they're there. 

 

I absolutely hate having to find another endo I can trust but I don't want to pretend the problem will magically go away. 

 

Thanks for your response!


Dx Graves 11/2016
11/2016 labs
Free T4 1.69 (0.57-1.25) Free T3 4.6 (2.2-4.3) TSH .01 (0.34-5.6)
9/2016 labs
Free T4 1.88 Free T3 5.9 TSH .01
4/2015 labs
Free T4 1.02 Free T3 2.9 TSH 1.75
Dx Hashimoto's 4/2012
Positive ANA, SMA and TgAb





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