floraMay 20, 2016 at 1:38 pmPost count: 133
Thanks, James – and continued good levels and feeling fine, to you!snelsenMay 20, 2016 at 3:24 pmPost count: 1909
SO NICE to hear from the old timers on this forum! Love it. I would love more hormone, to have more energy, but I also have afib. Labs say I am a tiny big hyper. Well, that is the labs, not me! TED continues to rule my life 24/7. Many eye drops, and have to tape my eyes closed when I sleep. But I can see, read and drive. Super photophobic. Must have sunglasses available at all times.
ShirleyfloraSeptember 1, 2016 at 12:02 pmPost count: 133
Hi again, Everyone –
Well, as with all of us who still have our thyroid gremlins, we can never say never, but it looks like I’m not officially an ATD’er anymore. As an update, I have had three labs since stopping Tapazole in late February: first, the TSH dropped some as we had hoped it would ; then, it climbed back up on the second lab (as I was sure it had, symptoms-wise). At that point, mid-July, we just gave my thyroid a flunking grade, and started a low dose of Synthroid (25mcg daily, in the morning, on an empty stomach, and an hour or two before breakfast). As is always the way with me at first, there was absolutely no change for the better in how I felt – still brain foggy, and like trying to drag myself around in a rusty poorly fitting suit of armour through two feet of cold mud – with fridges on my feet! The people here on this understanding forum get the picture, I know!
But after the continuation of all that for about three weeks, I suddenly woke up one morning in early August feeling years younger and pretty much human! Best ever in a long time – I was thrilled! Alas, maybe two weeks later, it was back to being a rusty tin person with a bag over my head again. That low starting dose was just too low for me, it seemed. From there, I counted the days to my next lab (a couple weeks ago) and to my next consult with the doctor (today). I was ready to say to him, “Please, Sir, I’d like some more”, if I had to. But, since the TSH number (although a little lower than last time) is still just not where we want it to be for me, he mercifully has upped my Synthroid to 50mcg daily – now to wait some more … !
So I suppose I’ll say good-bye to my friends on this thread … but I’ll check in on you all now and then, and be rooting for you, too, on your journeys along the ATD trail.
All the best,
florascandersSeptember 1, 2016 at 6:59 pmPost count: 108
Sounds as if there may be light at the end of the tunnel for you! Hope that little bump up in dose does the trick to get you back to feeling great!
I’m still off ATDs (since May now) with virtually unchanged labs thus far. Endo considers TSH low enough to be considered undetectable. She also expects I will eventually become hypo. Odd–one week I’m sure I’m going hypo, the next I wonder if I’m creeping up a little towards hyper, but generally I think I feel all right. She is still not seeing the need to test Trab, but is just watching the labs, and continues to be “pleasantly surprised.” I think my “anxiety” might be eased a little if the antibodies were checked. I’m hoping if things stay on track I can convince her to check them before my next visit.floraSeptember 2, 2016 at 6:25 amPost count: 133
You have to love it when our doctors are “pleasantly surprised” with what our thyroids are doing – good for you, too! Throughout most of my journey (once the FT4 levels were brought down in the beginning) the challenge has been getting them back up off the floor to decent levels again. That has meant carefully tapering me off Tapazole; a wait and see; and now gradually adding in some replacement hormone. I seem to have skipped remission altogether!
I’m so glad to see that you are feeling good these days, and hope it’s not too long before we both can write up a post for that “Share Your Success Story” thread up there!
floraKimberlyOnline FacilitatorSeptember 2, 2016 at 1:09 pmPost count: 4262
@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!terppsiOctober 20, 2016 at 6:28 amPost count: 24
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!snelsenOctober 20, 2016 at 9:47 amPost count: 1909
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!
ShirleyfloraOctober 21, 2016 at 5:49 amPost count: 133
@ 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.
florascandersFebruary 24, 2017 at 7:29 pmPost count: 108
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…floraFebruary 25, 2017 at 4:21 pmPost count: 133
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,
floraKimberlyOnline FacilitatorFebruary 27, 2017 at 9:43 amPost count: 4262
@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).scandersFebruary 27, 2017 at 2:58 pmPost count: 108
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.scandersJune 5, 2017 at 5:36 pmPost count: 108
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.floraJune 5, 2017 at 6:25 pmPost count: 133
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,
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