[flora May 7, 2015 at 2:27 pm Post count: 133]

#1060631

Hello fellow ATD’ers – I began my journey on Tapazole two years two months ago, and am still searching for that elusive sweet spot dose. Because I do at least respond to (the several) dosage changes I have had, I’m willing to persevere in the quest, but would like to ask how long it took you to wake up and feel as though you had finally arrived at your Goldilocks dose …. I don’t mean that first merciful relief that came 3-10 weeks into the process, but the dose that stabilized your levels, and made you feel pretty darn close to how you felt in your “life before Graves”, at last. I wake up each morning to “Nope, not there yet”, as my levels move around – sometimes to low hypo, on the very same dose that LOWERED my TSH on the previous blood draw (labs just won’t supply anything but TSH here in my province, unless it’s out of range). My doctor says he has seen that before – maybe I’m “going hypo”, bit by bit (?). Anyway, I guess I’m just needing a little boost today – it really is a marathon, isn’t it? Great to have this forum to turn to –
flora

[KimberlyOnline Facilitator May 7, 2015 at 5:30 pm Post count: 4288]

#1183738

Hello – I’m not taking any meds now (starting to slide a bit hypo; doc is keeping an eye on that), but when I was taking ATDs, I needed a slight dose change at almost every endo visit. However, I usually didn’t ever feel like things were horribly off-kilter. The trick was that I learned that my body was *very* sensitive to the meds, so it didn’t take much of a dose change to see a difference. A change of just 2.5 mg 2-3 days a week was often enough to get things back in line if I was heading a little hyper or a little hypo.

So my “sweet spot” was a bit of a moving target, but I usually felt mostly OK. If you are having wild swings and just aren’t feeling well, looking into surgery or RAI would be an option. However, it’s definitely important to understand the risks before making a decision that you can’t take back!

[scanders May 7, 2015 at 8:09 pm Post count: 108]

#1183739

Hi flora,

Hang in there! I’m closing in on the two year mark myself, and am also very sensitive to changes in the hormone levels. It sure doesn’t take much change, even within the normal range, to feel kind of yucky. (To be honest, I’m not exactly sure what “normal” feels like anymore.) I seem to feel especially bad with low normal. Bad, bad brain fog. It took a while for my endo to come to the conclusion that it was thyroid related since the levels were technically “normal”. Anyway, while I still feel up and down, I’m encouraged that I’ve actually kept the same dosing for two months with relatively stable labs. My endo is pleasantly surprised. (My GP shared that the endo doesn’t think this thing will “burn out” and I’ll eventually need TT. We’ll see. As Kimberly says, there’s no “do over” with a TT.)
So yep, it’s a journey, for sure. I’m trying to remember that I’m gaining knowledge and perspective (very helpful with my nursing practice). I think that even after two years I have quite a ways to go with this patience thing that Graves demands.

[Robboford May 7, 2015 at 9:44 pm Post count: 102]

#1183740

Hi flora and my fellow warriors,
Wish I had some wise words I could impart, but this journey we are all on is truly a roller coaster. Up one day, down the next, blindly into corners or brick walls some days it just seems to go on and on. I am approaching the 4 year mark now and long for that day when “feeling normal” is every day. Hang in there, it is truly a marathon but I am always focusing on the light at the end of the tunnel (some days it is easier to focus on than others) and it mostly gets me through. The TED stage I am at now is more frustrating and harder to deal with than the 1st 2 years after being diagnosed before I had a TT, although back then I really thought that part was the pits. Sending cyber hugs your way and hoping better days and being stable is not far away.
Cheers and hugs
Debbie (AKA Robboford)

[flora May 8, 2015 at 5:27 pm Post count: 133]

#1183741

Thanks, Warrior Friends – just hearing from others who’ve been on this same trail a while, helps us “cowgirl up” some, doesn’t it? Thanks for your encouraging words, and I hope you’ll soon get past the bumps on your path, too.
@ Kimberly – so glad to hear you are MM free, and all the best for continued success!
flora

[MaryI May 10, 2015 at 9:13 am Post count: 34]

#1183742

Hi Flora, I have not been here in a long time, however would like to comment. I was on Methimazole for about 2.5 years and most of that time needed frequent adjustment up and down in dosage. I eventually said to the Endo that I did not feel like exercising any more, and felt sluggish. He thought that I might be over medicated. We decided that I would stop the ATD and low and behold 6 months later I was declared in remission. It has now been almost 3 years and I am doing well, except when I eat salty foods. Then my eyes act up.
I am so happy that I persevered and did not kill off my thyroid, although many times I wanted to get rid of it once and for all.
Just my story.

[flora May 10, 2015 at 4:53 pm Post count: 133]

#1183743

Hi Maryl,
So glad you stopped by to share your experience with ATD. Recently, my doses have been adjusted downwards (at 22.5mg per week now), and it’s my hope that we’ll continue to slowly edge closer to ATD-free – especially where I slide into hypo territory every few labs, even on these lowering doses. I’m noticing annoying joint pains (shifting around – shoulder, hip, feet!) – maybe from slipping hypo, or a side effect of Tapazole (?) I wonder if getting to remission would take care of these …. Good for you, Maryl, and thanks again for dropping in!
flora
PS: Too bad about our having to avoid salty foods – dulse is a favourite treat here in the Maritimes, and I miss it – heavy salt content and all !!!

[terppsi October 19, 2015 at 10:35 am Post count: 24]

#1183744

Hi flora,

I also have been on ATDs for over 2 years,with constant dose fluctuation, but I finally seem to have hit a sweet spot a few weeks ago. I may even start reducing the dose in 1,5 months.
I still feel very tired, though, my endo says it could be because my FT4 and TSH havbe been all over the place for such a long time, it may take time for my body to get back to normal. But she will check my cortisol levels on our next appointment.
So hang on in there!

Virginia

[flora October 21, 2015 at 9:09 am Post count: 133]

#1183745

Hi Virginia –

Thanks for checking back in on this thread – we seem to have been on a similar ATD pathway. Over the past several months, Doctor and I have slowly been reducing my doses of Tapazole (from 30mg weekly a year ago, to 12.5mg weekly, starting today). I have found that small dose reductions, and allowing several weeks between labs for the dose change to “settle”, has been working best for me. What has been happening is that with each reduction, my TSH first goes down, and then creeps back up on my second blood draw after the reduction. So, we reduce again. Hoping to be Tapazole-free at some point, since I slip a little to the hypo side of things every other draw (still within normal ranges, though). Between slipping a little hypo “for me”, and a known side effect of Tapazole, I hope to get to ditch the joint/muscle pain – my only “complaint” these days:)!

My doctor predicts (and he sees this often in his practice) that I will likely be taken off Tapazole eventually and monitored; then he thinks I’ll likely slip hypo and go on Synthroid – and another search for a Goldilocks dose will begin

A step at a time, with lots of patience in between – and as a wise facilitator here puts it – “Don’t give up”! Thanks again for your post, and all the best to you, too!

flora

[bigad November 2, 2015 at 7:02 am Post count: 40]

#1183747

Hi All,

I’ve been on mmi for 2.5 years. I’ve been on 2.5 mg for the past year and was doing well at that dose, but in September, my Endo felt I could go 2.5 mg every other day. Unfortunately, that change seemed to rock the boat and trigger some symptoms, so I went back to 2.5 mg every day. I’ll just try to reduce again at a later time. Does anyone see a benefit in splitting daily dose…does it matter?

Nice thread and very informative…let’s keep each other posted with updates.

James

[bigad November 2, 2015 at 7:02 am Post count: 40]

#1183746

Hi All,

I’ve been on mmi for 2.5 years. I’ve been on 2.5 mg for the past year and was doing well at that dose, but in September, my Endo felt I could go 2.5 mg every other day. Unfortunately, that change seemed to rock the boat and trigger some symptoms, so I went back to 2.5 mg every day. I’ll just try to reduce again at a later time. Does anyone see a benefit in splitting daily dose…does it matter?

Nice thread and very informative…let’s keep each other posted with updates.

James

[flora November 2, 2015 at 8:02 am Post count: 133]

#1183748

Hi James (and fellow ATD’ers) –

Thanks for checking back in again – just looking through this thread again, it seems like many of us on ATDs are on very similar journeys.

As you saw in my previous post above, my dose has just been reduced from 2.5mg per day (17.5mg per week) down to 2.5mg five days a week (12.5mg per week) – I skip Mondays and Fridays. I am so eager to get to “zero mgs” per day/per week, that I suggested to my doctor reducing the dose to half (to 2.5mg every other day, like you), but he wants to do slow changes with me. I do seem to be very sensitive to dose changes, with corresponding changes in levels and symptoms. It means a longer timeframe to get me to MMI-free, especially where we allow several weeks of “settle time” between labs, but I think he’s probably right. So far, except for a few sleep disturbances and minor jitters now and then, I haven’t noticed much hyper-ness creeping back in. And it’s too soon yet for improvement in my joint/muscle complaint – hopefully, once things are managed to where I don’t keep slipping “too hypo for me”, that will subside.

As long as my journey on Tapazole seems some days, when I think back over the past 2.5 years plus, many things have (almost imperceptibly) improved for me: hardly ever experience the sweats, shakes, constant anxiety, appetite loss, morning dread, that feeling of “disconnection”, or the need to try hard to act cheerful around friends and family any more (some of us Gravesters would be great on the stage, I bet!). So, not quite to my spot yet, but getting there by degrees!

Yes, let’s keep each other posted – helps to know you are all out there, too!

flora

PS: I haven’t tried splitting the tablets into quarters – just going with skipping the two days a week – maybe others will check in and let us know if going with smaller bits every day seems to make a difference … (?)

[KimberlyOnline Facilitator November 2, 2015 at 10:14 am Post count: 4288]

#1183750

bigad wrote:

Does anyone see a benefit in splitting daily dose…does it matter?
James

Hello – This would be a question for your doc, but my 2 cents is that it might not be worth it at 2.5 mg/day. At one point, I was on 1.25 mg twice per week, and a quarter of a (5mg) pill can be difficult to work with!

[bigad November 2, 2015 at 1:20 pm Post count: 40]

#1183751

Thanks Kimberly/Flora! My Doc is fine with just an AM dose, but I was just curious if anyone split the daily dose between AM/PM (e.g. 1.25 mg in morning and 1.25 mg in evening) and if they felt a difference.

Kimberly- I’ve followed your posts for a few years…so you’re currently off mmi? Are you in remission? Has your TED subsided?

Thanks,
James

[bigad November 2, 2015 at 1:20 pm Post count: 40]

#1183752

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