[flora]

in reply to: Update on eye muscle surgery #1183333

Hi Christy,

While I haven`t had the eye procedure myself, I just want to say that I`m glad you`ve got past another bump on this road we are on. Hope your recovery is quick, and that your eyes will feel more comfortable really soon,

Flora

[flora]

in reply to: I`m getting close ! #1183341

Hi Joy,
Getting close, and on the mend – what great news – good for you, Joy! Although I am on the ATD see-saw, it has been my own experience that symptoms do tend to lag behind the numbers. I think I read here (or somewhere), that getting to our sweet spot dose comes first, and then the healing can begin. Maybe Kimberly can confirm or correct my understanding, though … Glad to hear you`re feeling better and can see that light at the end of the tunnel getting brighter!
Flora

[flora]

in reply to: Medical Alert Bracelet #1183310

Thanks for the heads up, Ladies – I hadn’t ever thought of wearing a medical ID bracelet, but just found a “kinda fashionable” one,too – on Amazon, with free shipping, even! It IS a little extra peace of mind.
And @ Kimberly – WooHoo for You! And all the best from here!

– flora

[flora]

in reply to: New member story… #1183241

Hi Twitchy,
Like Shirley, I hope that you are on your way to a more settled state, and feeling much better. My symptoms were a lot like yours for years – just wrote it all off to anxiety and career stress, never even bothering to bring it up to the doctor. Finally, it all got worse to the point where sleep disturbances, shakes, jelly legs, sweats, disciplined eating to try and keep weight on, and even higher anxiety, finally made me get myself to the doctor for my diagnosis. Since then, we have been working on my “sweet spot dose” of Tapazole, and coming closer, but not without symptomatic swings along the way, as my levels move around in response to the dosage changes (and maybe also to the continuing stress in my life) – a ton of fun, but way better than how I felt back then. Post a note, when you can – people here root for each other all the way!
– flora

[flora]

in reply to: any help please! #1183299

Thanks for posting about your good experience with going off ATD’s, Jane … something to think about over the winter, and to revisit with my doctor again. He has overall been willing to consider my views, and to collaborate with me, as the journey continues ….
All the best,
flora

[flora]

in reply to: any help please! #1183296

Hi Joy,
You had asked if I would consider RAI, or continue on with ATD’s – Just back from seeing Doctor today to talk over my labs from 11/25 (TSH was 3.67), and where to go next. Looking through my lab history, I seemed to feel best in the mid 3’s and low 4’s, although not without some joint/muscle complaints all the same. Most everything else has normalized: BP, appetite, less anxiety and tremors, “digestive matters” sorted out, sleeping better, energy and stamina SLOWLY coming back, and I can catch glimpses of my old “happy” now, that I hadn’t seen in a while (although my journey has been made even harder I think, these past two years, with the stress of family illness and loss). Doctor and I discussed a couple of options for me – first, to continue on with ATD longterm, as long as Graves is controlled. This is what is usually done here, when patients respond well to ATD, and can stay in ranges. I have not had any side effects with hives, WBC or liver problems (these last two are checked yearly) – only these joint/muscle aches, and these are not debilating, or even noticeable to other people. I inquired about attempting remission, by tapering off the ATD’s, but apparently this isn’t tried here – or at least in his practice – because of the possibility of going hyper again. Another option, if the joint/muscle aches (which are known side effects of Tapazole) became too much of a drag, would be of course do RAI and go on Synthroid. So, for right now, I’ll see if my levels will finally settle, maybe allowing for some faster healing to happen, and see where things stand come February, when it will be time for my next blood draw, and doctor visit. Hoping my 25mg per week of Tapazole – 5mg/day, except Tuesdays and Saturdays – will really be my Goldilocks dose at last! All the very best to you, Joy,
– flora

[flora]

in reply to: any help please! #1183292

Hi Joy,
I’m sorry that you are feeling so bad right now – and who needs it right before the holidays?! I’m on the ATD rollercoaster myself, but as my levels move around from blood draw to blood draw, I experience those same aches and pains all over, as you – muscles and joints from head to toes! Once our levels settle, I think these symptoms will settle, too. I know you’ll be hearing from forum friends who have had RAI, and can share their experiences through the post-RAI process with you, but I just wanted to let you know that I know the curves that Graves can toss our way, and that I hope you’ll be feeling better soon,
flora

[flora]

in reply to: Feeling fairly hopeless #1183277

Yes, it has been pretty quiet here lately, but as Kimberly noted recently, many views are likely from Guests, who have not yet joined us and cannot post until they register. Also, I imagine that once they hit their levels and feel better, many former posters move on – wish they could stay, for those of us still struggling, but I suppose it gives us something to look forward to. I have received much support here – advice, empathy and loads of humour! If you need a lift today, take a look through the posts under my User Name … flora … with a small “f”. Lots of encouragement there – and laughs, too! Hope today is a good day for you,
flora

[flora]

in reply to: Feeling fairly hopeless #1183275

Hi Linda,

I’m one year and 9 months into this journey, on Tapazole, and still looking for my sweet spot dose, too. While the swings have not been huge lately, with each blood draw, my levels seem to be a little bit up or a little bit down, and I never feel as good as I’d like to – some days are almost 95%; while others – well, lousy would be the word for me, too. Just thought it might help a little to know that others like me, are in the same boat as you. I’ll try and stick with the rollercoaster ride for now, but maybe others here will post their experiences with RAI – many, many have chosen that option and have been glad they did.
In the meantime, we’re never alone here – all the best,

flora

[flora]

in reply to: Hello #1183202

Hi there –
So glad you found this wonderful place to come to, too – you’ll find lots of information and great support from your new friends here (as you read our stories, you’ll see that we’re also known as “Graves Warriors”, “The Gravesters”, or “The Graves Gang” – count yourself in!). Like you, we are all at some stage of this “interesting” journey together. You ask how long we took to notice some improvement towards regaining some of our spunk and stamina, after first starting the AntiThyroid medication? Well, for me, it was about 10 weeks of waiting and waiting, and wondering and wondering if these tiny little pills were ever going to kick in. Then, one late Spring day, I began to feel the clouds lift just a little, and then a little more each week – a great feeling for sure – and the very worst was over. Since then, my doctor and I are still playing with my dose of Tapazole, to come to just my very dose – with little ups and downs along the way – but soooo much better than when I first showed up at his door in February 2013. Hope you’ll be feeling better really soon, too – (maybe lots sooner than I did!).
Keep us posted,
flora

[flora]

in reply to: Puzzling Symptoms? #1183125

Hi Everyone,
Oh, fooey – just wrote a post, and the internet konked out here!! Trying again! Just back from a consult with my doctor about my bloodwork of 10/7. My TSH climbed from 1.58 on 8/27, to 6.22 on 10/7. TSH range has been tightened here (normal is now 0.27 to 4.22), so I have gone a little hypo, in those few weeks. Even though it’s only “a little” hypo, I am one, (like many of us here) that feels every little change. This could explain those annoying symptoms I’ve been feeling, and venting about here! My doctor agreed that this swing is a fair bit, for me, and is reducing my Tapazole dose to 25mg/week, down from 30 – another dose change, but I guess that’s the only way we get there. (The lab did produce a Free T4 for me this time – they will only supply it, if the TSH is out of range. It’s 13, on a recently tightened range for normal of 12-22, so I am just on the lower edge there.)
I keep reminding myself that these are not huge big swings, though, and that the pendulum will settle on “my” dose, one of these days – for all of us, too.
All the best,
Flora
PS: One thing I learned at my last appointment, is that it pays to listen really closely to what the doctor is saying – I was the very last appointment on a busy Friday afternoon last month. We were discussing the drop in TSH, down to 1.58 in August – he really wanted to drop my Tapazole, which would have dropped the TSH even further, and sent me ,more hyper. It took us a while to sort out the TSH feedback loop thing … glad we did.

[flora]

in reply to: Hyperthyroidism/Graves Disease #1183168

Hi Jennifer –
I just want to add my “welcome”, too! You have found the best place to come for sharing and support, as we roll along together on these rollercoaster rides. I happen to be on the Anti-Thyroid Drug ride (which does feel an awful lot like yours, by times), but you’ll be hearing from more new friends here, who can share their journeys with their RAIs and TTs with you, too, I’m sure. We are all looking forward to landing on our “sweet spot” dose – can take a while, we know, but we’ll get there!
All the best,
Flora

[flora]

in reply to: Puzzling Symptoms? #1183121

Once more fun symptom of levels/dosages changes I forgot to mention – those muscle and joint aches and pains -especially hips, gluts, knees and feet. Yep, the fun continues, we’ll find that goldilocks dose sooner or later!
Flora

[flora]

in reply to: Puzzling Symptoms? #1183120

Hi Connie and Sue,
I’m one of those you mention, Sue, who reacts to even tiny fluctuations in levels or dosage changes in my Tapazole, even when my labs are in the normal ranges. Whether the levels change because of a dosage asjustment, or just change all by themselves (due to the stress I’ve been under?), I experience my own personal basket of symptoms for weeks after- and yes, some from both the hypo and hyper lists. These include a high level of anxiety,reduced appetite, sleep disturbances, weird dreams, little sweats, shaky hands, internal tremors, hair loss, and that flat feeling of watching life from behind a plate glass window – just a ton of fun! But my sweet spot is out there somewhere, guys, and I’m trying to patiently float through it all till we get there. Hang tough, Graves Gang (as a favourite poster would say!)
-Flora

[flora]

in reply to: Please Read – Bulletin Board Coverage Through 10/6 #1183111

Adding my healing thoughts, too, Kimberly –
Flora

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