[flora]

in reply to: New to Grave’s Disease/Please Help #1184756

Hi Jessie,

You have come to just the right place for encouragement and support – and, believe me, all of us here remember just how awful the start of this journey was! For me, it was 8 or 10 weeks of feeling pretty much like you – plus loneliness and “disconnection” or something – sort of like watching from behind a plate glass window, while everybody else sailed happily along with their lives. BUT, it got SO much better after those first few weeks (which at the time felt like an absolute eternity).
So hang in there – you’ll hear from more of us, who’ll all be rooting for you, too!

All the best,
flora

[flora]

in reply to: On ATD two years-plus? #1183786

Hi scanders,

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!

Take care,
flora

[flora]

in reply to: On ATD two years-plus? #1183784

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,
flora

[flora]

in reply to: Iodine questions #1184557

Hi and welcome to the forum – you’ll find lots of help and good information here. Your question caught my eye, because I was raised on the coast in the Canadian Maritimes (my father was lobster fisherman), and like most people in the area, we consumed lots of fresh caught shellfish (lobster, scallops, clams) growing up – and instead of potato chips, our treat is “dulse” – a kind of kelp that is picked off rocks at low tide then dried to a salty crisp – and I still love (and miss) it. Although there is increased salt in that diet, I’m not sure about actual increased iodine content. “Just in case”, I now limit myself to a few shellfish treats a year, and only the odd handful of dulse (sigh) now and then. Your doctor can help guide you on this one. All the very best to you.

flora
(I have edited out reference to an anecdotal observation, in keeping with science-based information that this forum strives to provide).

[flora]

in reply to: can’t decide- IV steroids or oral #1184429

To Shirley and Liz –

While eyes are not (yet) a big issue with me, I just have to jump in here and tell you both how much your input and experience matters to me – and likely to most everybody else on this great forum. I’m sorry for all that each of you has had to deal with, but it’s wonderful that you share it all with us. With such great members, and Kimberly to shepherd us along, we’ll wrestle this GD condition to the ground! Thanks so much, you both!

flora
PS: Liz, have you thought of upping to “Warrior” status like Shirley …. ?

[flora]

in reply to: On ATD two years-plus? #1183782

Thanks, James – and continued good levels and feeling fine, to you!

[flora]

in reply to: On ATD two years-plus? #1183780

Hi ATD friends,

As an update, I visited my doctor today to discuss recent lab results, and it appears that I do have thyroid function left, and I remain “drug free”. TSH values have come down since I went off methimazole, although not quite to the level that we are aiming for, so I presume that FT4 levels have climbed out of the dungeon at least some – labs here supply only TSH, and nothing else, if the TSH falls in range. As I understand it, symptoms can lag TSH (maybe Kimberly can confirm or correct my understanding). With “too close to hypo” levels now in the rear view mirror, I’m looking forward to getting back to “me”. Hope your journeys are going well!

flora

[flora]

in reply to: Proptosis recurrence 3 years after OD #1184359

Hi gatorgirly,

What wonderful news! Just wanted to say how happy I am that you have this big surgery now behind you – good for you, and all the very best with your recovery!

flora

[flora]

in reply to: On ATD two years-plus? #1183775

Hi scanders –

Yes, the low end of FT4 can be a miserable place for sure, for some of us at least (me, too). So glad you are moving towards a friendlier spot in the range, and that those glimmers are starting to happen. Too bad there is always “a period of adjustment” with a dose change, but as another poster puts it, we are always waiting for something . Keep the good news coming!

flora

[flora]

in reply to: On ATD two years-plus? #1183772

Hi James,

March 5th will be three years on Tapazole for me, with many ups and downs in dosage along the way – from 105mg/week near the beginning to get the TSH moving (went pretty hypo pretty quick), all the way down to just 10mg/week a month and a half ago till today. And I’m so glad that we’ve got all the way down to zero at last, but in very small reductions most of the way – a couple times, we tried bigger cuts (at my suggestion, forgetting the patience that being on ATD treatment demands!), but my body protested loudly! So for me, slow and steady with no sudden moves has worked the best.

Yes, it would be nice to toss my fancy little pill case in some drawer for good, but we’ll see. My doctor seems to have a pretty good sense of where things are headed with me, and if I need to go on the replacement, I’ll just think of it as “energy in a bottle”, and bring it on!

Sounds like you are at a happy level – keep us posted, too!

flora

[flora]

in reply to: On ATD two years-plus? #1183770

Hello everyone,

In hopes that my posts are helpful to those on the ATD path like me (and at risk of hogging this thread!), here’s today’s update. I had a blood draw on the 15th, and a follow up visit with my doctor today. As my symptoms had pretty much told me, I had strayed into “official” hypo territory this time, despite yet another dose reduction in Tapazole last month.

So as of today – and for now at least – I’m off Tapazole! Doctor would like to check levels again in 6 weeks to see if whatever remains of my thyroid function will put me at a good spot, but he remains quite sure that I’ll be needing replacement hormone at some point.

And so the journey goes ever on …..

flora

[flora]

in reply to: Success Story (A Blast From the Past) #1184287

Welcome back, Sue! Your story has really made me smile – well actually, stand up and cheer – so good to hear you’ve tamed it at last!

Thanks for sharing, and all the very best,
flora

[flora]

in reply to: First time poster, Graves’ diagnoses in November #1184254

Hi Dagny,

So glad you found your way to us – lots of good information, support and encouragement here, for sure. I’m sorry for the lovely basket of symptoms you’ve been handed, but if you’ve been reading up on us, you’ve probably spotted many kindred spirits in just he same boat as you at first – not a joyride, or a short one, but you’re never alone, and yes, there is a light at the end of that tunnel.

As Kimberly mentioned to me early on my ATD journey, dosing is as much art as science – my doctor started me at 5mg per day, but my stubborn TSH just wouldn’t move (this often happens in the early going). So up the dose went to 15mg – I ended up in hypo land, too. Most of us who choose the ATD trail get used to riding rollercoasters for a while!

You’ll likely be hearing from others who opted for RAI or TT who’ll be sharing their experiences, too – it’s great that we have treatment choices to pick from. Be sure to keep the faith, keep in touch, and let us know when you get the all clear for your yoga. I’m back to ballet class, after doing just barre stretches at home. For now, I just avoid the studio mirrors

All the best,
flora

[flora]

in reply to: On ATD two years-plus? #1183767

Hi Shirley,

It’s late in the evening here, but I just had to reply to your post, for two reasons. First, with thanks for your constant support and encouragement to so many (all!) of us here in the Club, and second, because (and I’m smiling with appreciation as I type this), April 6, 2013 was my very first post (I was one frightened new recruit, I’ll tell you), and you were one of the first here who posted a reply to me on that very first day.

Thank you, Shirley, for helping us along this journey – makes it all so much easier to know we are all in this together!

flora

[flora]

in reply to: On ATD two years-plus? #1183765

Hi terppsi, and ATD friends,

It’s my turn to post another update on this thread. (Good for you, terppsi, on your great news!) I saw my doctor today to learn my lab results from December 30th. As I suspected, the TSH had hardly budged since the previous labwork done in early October. Despite a reduction in dose on October 26th from 17.5mg per week to 12.5mg per week, it is still near the high end of the normal range. As he and I had discussed a few visits ago, he still feels that after being slowly taken off Tapazole, I’ll likely be off thyroid meds for a while, then probably slide hypo, and begin thyroid hormone replacement medication. He wants to proceed slowly through the process, so for now, he has reduced my dose down to 10mg per week (I’ll take 2.5mg on Tues., Thurs., Sat., and Sunday), and recheck bloodwork mid/late February.

I feel very lucky to have a doctor who’s willing to work along on the ATD option with me, and to have this forum to turn to, to share progress notes with, and to learn from, every time I visit. (Please excuse the poor grammar, but the sentiment is sincere!).

All the best,

flora

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