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#1 Sept. 2, 2016 13:09:34

Kimberly
Online Facilitator
Registered: 2008-10-14
Posts: 3962
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On ATD two years-plus?

@Flora - Fingers crossed that you have settled on your “sweet spot”! I know that those on this thread will welcome your continued input!

@scanders - There are new guidelines that just came out on the treatment of hyperthyroidism, and there is more emphasis on testing antibodies prior to withdrawing ATDs. Regular testing of antibodies probably isn't as helpful - and can be very expensive!


Kimberly
GDATF Forum Facilitator

…through nature's inflexible grace, I'm learning to live…
– Dream Theater

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#2 Oct. 20, 2016 06:28:44

terppsi
From: Portugal
Registered: 2013-12-04
Posts: 18
Profile  

On ATD two years-plus?

Hi all,
after more than 2 years of roller coaster, I seem to have stabilized. We have started slightly decreasing the doseage and I managed to go around 3-4 months before going to see my endo.
I had already noticed thath my thyroid was softer and smaller and this was confirmed by the scan I had monday. The goiter is indeed slightly smaller, albet a few millimeters.
So I am actually glad I did not go the surgery route and waited it out.

And for all of you who are still suffering, there is hope!

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#3 Oct. 20, 2016 09:47:12

snelsen
From: Seattle, Wa.
Registered: 2010-01-01
Posts: 1909
Profile  

On ATD two years-plus?

To Flora!
Oh no! Never say good bye! You have so much experience to contribute to others,and to the folks who have had no need to “find” this wonderful website and thread yet!
Shirley


TED 2008-present. OD for pressure on optic nerve 02/02/10
Eye muscle surgery 09/23/10 Upper eyelid surgery 02/01/11
Lower eyelids with grafts from palate, 10/5, 10/25/11
Graves dx/thyroidectomy 1959-Synthroid from 1980

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#4 Oct. 21, 2016 05:49:21

flora
Registered: 2013-03-28
Posts: 125
Profile  

On ATD two years-plus?

@ terppsi -

Hi terppsi - What good news to bring to this thread! So glad things are coming along so well for you - we'll be watching for your “Success Stories” post soon! Lots of great ones there, by members on each of the treatment paths - peace and happiness eventually happens, one way or another, and you seem to be just about there!

@ Shirley -

OK, Shirley, I'm staying put! Had wondered if I should be on a thread called “From Methimazole to Synthroid” or something, now that I find myself off ATDs and over here in the Synthroid crowd. But, even if not an ATDer any more, I'll drop in here now and then all the same. I remember noticing pretty early on, that when Warrior Shirley speaks, it's worth listening - it still is! Thanks for always being a big part of this wonderful forum.

flora


… there was a star danced, and under that was I born.

Edited flora (Feb. 4, 2017 12:10:00)

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#5 Feb. 24, 2017 19:29:51

scanders
Registered: 2014-01-25
Posts: 106
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On ATD two years-plus?

Update: restarting a very low dose of methimazole. Free Ts at the top of the range, and I feel it. But MMI has worked well for me before, and I have no reason to expect that it won't work this time to get me feeling better and those levels back to my happy hormone place. Now, my endo said there were still antibodies present since my TSH was still so low, but she still stopped the MMI because my lab levels couldn't stay stable on the MMI (they kept dropping.) I know those recent guidelines for hyperT suggested running TRAB first. But it doesn't really say what to do if your TSH is low and Free T's normal, but they drop to very low normal with even a teensy does of MMI. I am surprised by how rotten I feel.I'm at the top of the range, but not technically out of range. And it just sort of snuck up on me! I guess that's a reminder for those of us with thyroids not to let our guard down. For some reason I thought I was done with fluctuating levels, but I guess Graves isn't done with me yet…

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#6 Feb. 25, 2017 16:21:58

flora
Registered: 2013-03-28
Posts: 125
Profile  

On ATD two years-plus?

Hi Scanders -

Our thyroid gremlins keep us guessing, don't they? Like you, I know that FT4 at the bottom of the range is no place to be for me either, so I've been trying on various spots for size, in that wide range - with increasing doses of Synthroid now. (I was taken off Tapazole last year, because my TSH would slip higher ever other lab, as we were decreasing my doses). What I have learned is that “close, but no cigar” is so true with thyroid levels - speaking for myself, they've got be be bang on, or my body is just plain not happy. But I'm closing in now, with each small Synthroid increase. I hope that the tiny dose adjustments you and your doctor are making, will put you back to your happy spot really soon! Keep us posted, and keep the faith,

flora


… there was a star danced, and under that was I born.

Edited flora (Feb. 25, 2017 16:37:32)

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#7 Feb. 27, 2017 09:43:42

Kimberly
Online Facilitator
Registered: 2008-10-14
Posts: 3962
Profile  

On ATD two years-plus?

@scanders - I've heard of this issue occurring in kids, and one option that docs can use is adding in a small amount of replacement hormone.

But hopefully, you can get the MMI to the correct dose without needing to do this. Before I stopped taking the meds for good, I was taking 2.5 mg per week (1/4 of a tab twice per week).



Kimberly
GDATF Forum Facilitator

…through nature's inflexible grace, I'm learning to live…
– Dream Theater

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#8 Feb. 27, 2017 14:58:04

scanders
Registered: 2014-01-25
Posts: 106
Profile  

On ATD two years-plus?

Thanks for the encouragement! You're so right about “close, but no cigar” when it comes to thyroid levels.
As far as adding thyroid hormone–I expect we'll need to get back to the midrange first, then see where I go.
Baby steps, after all. It took quite a while to convince my endo that normal isn't necessarily optimal for me, and using MMI to increase TSH doesn't necessarily leave us Graves folks in a good place. So given enough time, perhaps she could be persuaded to try adding some hormone.
Thanks again for the support! It does help to share with those who can understand.

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#9 June 5, 2017 17:36:30

scanders
Registered: 2014-01-25
Posts: 106
Profile  

On ATD two years-plus?

I'm off methimazole again, and I actually feel pretty well. My endo has decided to test antibodies with next labs mid-July. (She said she intended to add them to the order for this time, but missed.) I think at this point I just need to enjoy this time when I'm feeling well, and see where this journey takes me next.

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#10 June 5, 2017 18:25:17

flora
Registered: 2013-03-28
Posts: 125
Profile  

On ATD two years-plus?

Hi scanders -

Great to read your post and to hear you're feeling better! A long and winding road, this Graves, isn't it? Here's hoping the good times continue for you, and that remission is just around the corner,

flora


… there was a star danced, and under that was I born.

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