[Claire95 July 9, 2012 at 12:41 pm Post count: 12]

#1059188

Has anyone successfully gone into a second remission on ATD’s? I was first diagnosed in the summer of 2006 and started taking Tapazole. I was very slowly weaned off and was completely off ATD’s in April of 2007. I had normal thyroid levels until March of 2012. I have been back on Tapazole since April.

My endo wants to get my levels stabalized before considering RAI. I’m leaning towards RAI or surgery at this point because I don’t want this to come back yet again in another few years, but at the same time not having to do either one would be even better.

[Bobbi July 9, 2012 at 2:41 pm Post count: 1324]

#1172812

Hi, Claire:

Remissions are — by definition — temporary. It is possible for someone to die of something else before a remission goes away, but generally, people who have remissions lapse back into illness at some point down the line.

Second remissions are significantly rarer than first remissions. At least that was the information available when I was first diagnosed, about 15 years ago. The information then was that approximately 20%-30% of people experienced a first remission, but that only 10% of them experienced a second one.

We do have a fellow who looks in periodically on this board — named James — and I believe that he has experienced more than one remission, and possibly two.

My own decision to do RAI was based on the fact that I did not want to be 10 or so years older, and experiencing hyperthyroidism again. It was too hard the first time to contemplate enduring it again when I was close to 70 years old.

[LaurelM July 9, 2012 at 3:14 pm Post count: 216]

#1172813

Hi Claire,

I was kind of wondering the same thing. We have a similar situation.

Thanks for the numbers Bobbi. I wonder if there are any newer numbers regarding 2nds remissions. I had been looking but haven’t really found anything.

Laurel

[KimberlyOnline Facilitator July 9, 2012 at 3:17 pm Post count: 4294]

#1172814

Hello – I don’t have a comparable study on adults, but this study out of France was done on children and indicated that remission rates can increase (up to 50%) with repeated rounds of Anti-Thyroid Drugs. Here’s a link:

(Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

http://www.thyroid.org/patients/ct/volume5/issue4/ct_patients_v54_3_4.html

James is the facilitator that Bobbi mentioned; I believe that he is in a 9-year period of remission after 3 rounds of ATDs.

The section on remission in the latest guidance from the American Thyroid Association and the American Association of Clinical Endocrinologists provides the following definition of remission: “A patient is considered to be in remission if they have had a normal serum TSH, FT4, and T3 for 1 year after discontinuation of ATD therapy. The remission rate varies considerably between geographical areas. In the United States, about 20%–30% of patients will have a lasting remission after 12–18 months of medication. The remission rate appears to be higher in Europe and Japan; a long-term European study indicated a 50%–60% remission rate after 5–6 years of treatment.”

Since the ATA and AACE refer to the concept of a “lasting remission”, I don’t think that remission *has* to be temporary…but it certainly *can* be temporary for many individuals.

Bottom line, you will want to do your own research of the risks and benefits of each option and make a treatment choice that you are comfortable with.

Take care!

[LaurelM July 9, 2012 at 3:25 pm Post count: 216]

#1172815

Thanks Kimberly! I’m sure it will be part of my discussion with my endo when we get to that point but I also like to have done my own research so that I can have an informed discussion.

[adenure July 9, 2012 at 4:41 pm Post count: 491]

#1172816

Hi!

I was thrown into making a definitive decision sooner than I anticipated bc of the liver issues I had with methimazole, but I’m glad I chose surgery. One thing that is nice is knowing that I don’t have to worry about going hyper again. It is a big relief to have that out of my mind/ subconscious.

Five years of normal thyroid levels- that’s great. I wonder if the length of the remission has anything to do with how likely you’ll have another remission? I don’t know- maybe something to ask the doctor. Or if your numbers aren’t that far out of range maybe it’s more likely too? I’m just throwing out ideas/ questions to ask your doctor maybe.

I hope the right decision comes to you and all works out well. Have a good week.

Alexis

[Harpy July 9, 2012 at 6:55 pm Post count: 184]

#1172817

Not sure what actual true numbers are as there are so many different compounding factors with GD.
My partner has gone 5 years on PTU treatment and during that time she has been in good health symptomatically speaking except that her TSH remained suppressed, this has finally shifted and all her numbers have been good for 6 months now, we will look at weaning off the PTU at the end of the year and go for remission. I have no doubt in my mind that if she were to have a relapse that she would take the same path again.
Our view is that this is not a purely genetically determined condition & that diet, lifestyle & environment play a significant role in the manifestation of GD, so with that in mind we also believe there is a significant amount one can do to support the bodies healing process along with ATD treatment.
I have read about many individuals achieving remission with ATD’s sometimes having to go at it multiple times like James, I have also read about individuals who couldn’t go down that path because of allergenic reactions, I have also read about individuals whom have had success with surgery or RAI and others whom never quite get right after Surgery & RAI and in some cases having the eye disease & other complications resurface after many years of stability even though the thyroid was removed or ablated.
So just like treatment with ATD’s the treatment by Surgery or RAI is no guarantee of lasting remission, it just eliminates the Hyperthyroid symptoms as there is no functioning thyroid, but one is just a succeptable to the other autoimmune manifestations.
So however you flip it, there is always some risk of recurrance in one form or another, so vigilance & routine testing will always be a part of remaining healthy. Just to balance that a bit so you don’t get the why me? victim thing going on, understand that the bulk of the population is siting on the verge of a health crisis only they just don’t know it, whether it be an autoimmune disease, heart disease, cancer, diabetes etc, etc.
We all need to be more proactive & conscious of our health.

[catstuart7 July 9, 2012 at 10:43 pm Post count: 225]

#1172818

Harpy wrote:

Just to balance that a bit so you don’t get the why me? victim thing going on, understand that the bulk of the population is siting on the verge of a health crisis only they just don’t know it, whether it be an autoimmune disease, heart disease, cancer, diabetes etc, etc.
We all need to be more proactive & conscious of our health.

Ahhh, ignorance is bliss, eh? If I’d had any clue this was going to happen to me I would have made so many different decisions. I hope to get as much silver lining out of this cloud as I can though. There are changes I’ve needed to make in my diet and lifestyle for a long time that now feel imperative.

[Author]

Posts