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in reply to: stress #1185138

Thanks, Liz! I might be referring to both. I found out something fairly stressful a few weeks ago, and this will continue to be a stressor for a bit. (Meets the criteria from one of the studies mentioned.) I have routine labs coming up this week with my endo visit, but if stress were to wreak havoc, I don’t know that it would show up this soon in labs, anyway? And if I read the studies correctly, it may indicate that age (50’s) is in my favor? Sigh…time for chocolate, I think.

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in reply to: On ATD two years-plus? #1183795

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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in reply to: Orbital Decompression #1185035

I’ll just throw my oar in here in case it helps. I have had bilateral OD, and was taking methimazole when I had that surgery, as well as the strabismus surgery. In fact, my FT3 was a little elevated for the last surgery, but the surgeon and anesthesiologist said it was OK to proceed. My PCP said the main purpose of the pre-op these days is to check that our hearts can tolerate the surgery, and of course, you’re monitored very closely during the surgery.

I had gotten in my head from somewhere that maybe if I waited long enough, since my optic nerve wasn’t compressed, that my eyes would improve enough to avoid the OD. My surgeon said I could wait as long as I wanted as long my eye health wasn’t further compromised, and I might see some improvement, but it wouldn’t be enough to avoid the surgery. My PCP and endo agreed, as did the strabismus MD. At any rate, my husband reassured me that the surgeon, who was voted a Best Doctor by his peers, wouldn’t make a recommendation that wasn’t sound and put his reputation at risk. Made sense, so I took a leap of faith and agreed to it. I have to say, I’m glad I didn’t postpone it further.

Also, I was off of methimazole from last May until February. I’d hoped I was headed toward remission, but my TSH just never came back up. (Sadly, everything but my TSH rose…) So I’ve had a little hyper-blip, but I felt better within a few weeks, thank goodness, with just a little bit of methimazole, which I am still taking. Anyway, hope this helps.

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in reply to: Methimazole success stories – how long? #1185049

I was diagnosed in 2013. My TSH hasn’t made a return yet, but I’m not quite in remission yet, either. I thought maybe I was heading for remission when I was off methimazole for about 9 months, and I was just waiting patiently for my TSH to come up, but sadly, everything but TSH came up. However, we caught it early, added just a little bit of methimazole back, and the hormones were back to mid-range within a few weeks. But TSH is still low. (Not sure if that’s helpful for you, since I obviously haven’t achieved remission yet.)

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in reply to: On ATD two years-plus? #1183794

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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in reply to: On ATD two years-plus? #1183791

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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in reply to: Off of ATD – How long can Graves remission last? #1184886

Congratulations on your remission! My understanding is that Graves can be remitting and relapsing. I’ve been off of Methimazole since May, after having been on varying doses since 2013. My TSH is essentially undetectable per my endo, but my actual thyroid hormone levels are smack in the middle of the range. We did taper down to a low dose before stopping. With my low TSH, she thinks there are still antibodies at play, and isn’t sure I’ll be able to stay off MMI. But we know it has worked for me should my levels rise again. (She won’t call it remission, since my TSH has not returned to a normal range yet?)

I’ve had severe TED with OD and muscle surgery thus far. My endo said because of TED, if I for some reason would be unable to tolerate MMI, or if it were no longer effective, she would not consider RAI but recommend TT.

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in reply to: Whether to have a thyroidectomy #1184705

I stayed on methimazole for over 2 1/2 years, and have been off since May of this year. My endo is reluctant to declare remission just yet since my TSH is still very low, even thought the Free Ts are in range, and she hasn’t rechecked Trab yet. I seem to be pretty sensitive to MMI, so small adjustments seemed to have a big impact for me, but we were finally able to gradually taper down. Everyone responds individually to medications, and we all know that with Graves we can’t rely on lab values corresponding with severity of symptoms.

I still have a small goiter that my endo can palpate, but you can’t look at me anymore and see that there is swelling on my neck. You could see it when I was first diagnosed, if you knew what to look for. (Wish I’d noticed that– might have sought help sooner.)

My TED was severe and I’ve had OD and muscle surgery (so far). Honestly, if I’d read the studies Liz referred to at that time, I might have opted for TT. No doubt, TED has been the worst part of this journey for me. I don’t think I’d rule out TT if my symptoms flare again, either, but then, I know MMI works for me at this time, and I haven’t had adverse effects from it.

Hope that helps.

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in reply to: On ATD two years-plus? #1183785

Hi Flora,

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.

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in reply to: On Week 12 and very discouraged #1184494

Oh, so sorry! That TSH must have you feeling miserable! (I think my mood is much worse when my hormone levels are low. I think hypo is worse for me overall than hyper, but that’s just me.)As Ellen noted, hypothyroid should be avoided during treatment for hyper. I also saw that on a brochure from one of my eye doctors. My eye disease really became active when I became overtly hypo. I ended up with bilateral OD and strabismus surgeries. I primarily have single vision now, except when I’m tired or stressed–then a little double vision might show. My eye care has primarily been from an oculoplastic surgeon.

I am fortunate enough to finally have a trial off of methimazole after being on it for about 2.5 years. I’ve had labs about every 6 weeks most of that time. (10 weeks off now–here’s hoping it continues!)

Initially I lost 30 pounds, and that did come back, as expected. My endo told me that once I was stable, then I could worry about losing weight on purpose, but this weight needed to come back. Having always had to watch my weight, I’ll be honest that this weight business was worrisome. It’s helped tremendously to have a doctor that seems to be in tune with me, although I think I had to train her to some extent to see that “normal range” might not be my “optimal range”. As long as my thyroid hormones are in a happy place, my weight stays fairly stable, and luckily it’s landed in a pretty comfortable place for me.

Hope this helps!

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in reply to: On ATD two years-plus? #1183779

Thanks for the advice! I’ve been down to 3 days/week for the last month, and that was after skipping several days (per endo recommendation) when last labs were at the bottom of the range. I was wondering about checking TRab. I haven’t gotten an answer on that, but she also doesn’t think there’s really a lower dose to go to prior to stopping, especially since the labs stayed so low.

I think the tricky part for me is that while I’m really, really good at noticing symptoms when levels are getting low, I don’t feel all that bad when levels get a little high, so that’s where I tend to miss changes. But, I also know that bringing levels down has never been an issue–it’s getting them to rise back up after going low that’s been challenging.

Rationally, I know that having had severe TED may increase the odds of relapse. To balance that, being on the ATD as long as I have may increase the odds of going into remission. And I could just as likely become hypothyroid. Only time will tell. (Unless someone has a working crystal ball? )

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in reply to: On ATD two years-plus? #1183776

Well, we know the drill. My levels dropped lower, we adjusted the ATD down more, and my levels rose just a smidge. But this time the endo said it’s time to try a trial off the medication (there’s not really a meaningful way to reduce it any further) to see if those Free Ts can come up a bit more, at least to mid-range. I’m cautiously optimistic! (Close to 3 years on ATDs.)

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in reply to: On ATD two years-plus? #1183774

After feeling horrible December and January (low-normal is not a good place for my FT4) endo has agreed to a few dose reductions. I’ve been on pretty small doses, but just seem pretty sensitive to the changes in thyroid hormone levels they produce. So after a little hyper-blip last fall, I’m back down to 2.5mg 6 days/week. And for the first time in a long time, I have detectable TSH! Still low, but I’ve got some. FT4 is pretty close to being back to mid-range. I think endo and I are both a little hesitant to think too far ahead since I’ve yet to stay stable for any length of time. So slow and steady seems to be the key for me, too. I don’t know if it’s that little bit of TSH or what, but I think I’m seeing glimmers of the old “me”. (I think I’m coming up on almost 3 years on ATD? At least 2.5.)

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in reply to: A Week Post-TT :) #1184305

Thank you for sharing! For those of us still “on the fence” it’s nice to hear how it went, and how the next leg of your journey goes with dialing in replacement hormone.

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in reply to: Strabismus surgery…. #1184111

Hi Shirley,
I quit taping somewhere along the line after OD, just using ointment at bedtime. I’m not sure why, but maybe not my brightest move. Sometimes I really notice the retraction, and sometimes not so bad. However, my eyes have felt worse (scratchy and dry) the last few months and I’ve started restasis drops. So now I wonder if resuming taping might help with discomfort? For some reason, it hadn’t occurred to me. Brain fog when my levels went low? Sigh… I use the soft blue Nexcare tape. Repositionable, doesn’t pull out my eyelashes, pretty comfortable. It’s gone up in price in the past year, though. (I’d complain about that after what the restasis cost? Of course I’m hoping that pretty soon he can just fix my lid.

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