[Ski]

#1071750

This would be a good message to send to Peter privately as well, Kimberly.

You’ve got it right ~ the 20-30% successful results with ATDs are achieving full remission, meaning a period of time with normal thyroid hormone levels and NO medication (after taking the ATDs for 18-24 months). MOST patients have success in reaching normal thyroid hormone levels with the ATDs, as far as I know. I’m not sure if there are statistics on the percentage of patients who find no relief from ATDs. Remission is not a "cure," though, it is temporary by its very definition, and it does not directly address the underlying autoimmune issues, though some patients have seen a drop in autoantibodies following treatment. I’m not sure that has been directly connected to the ATDs themselves. The antibodies can wax and wane throughout our lives for all of us, and I don’t believe that any direct connection has been made to the cause.

The high success rates with thyroidectomy/RAI have to do with resolving the hyperthyroidism, that’s all. Of course, without a thyroid, you can’t say the patient is in remission. These do not directly address the underlying autoimmune issues either.

None of the three treatments for our thyroid have anything to do with addressing TED antibodies. That’s an entirely separate discussion.

Hopefully the newbies to the site don’t stop researching their condition at that page ~ if they continue on to this board, they will find the details that help them translate. I do see what you’re saying, and lots of people do get confused, even at the doctor’s office, over that information. If the treatments were more similar to each other, perhaps we could compare apples to apples. I’m not sure there’s a simple way to address that in an overview.

[Kimberly]

#1019455

I was reviewing the “treatment options” section of the web site, and it states that ATDs have only a 20-30% success rate. To clarify, the 20-30% rate is for full remission…as opposed to achieving a euthyroid state, correct? So you have the 20-30% who achieve full remission, but some additional percentage of patients who may be able to maintain a euthyroid state on a low dose of ATDs.

Also, Thyroidectomy and RAI are listed as having 90-95% resolution…but is this referring to resolution of the hyperthyroid state, or resolution of Graves-related autoimmunity (i.e. antibodies against skin/eye tissue)?

I appreciate all the fabulous info on the web site, but it seems like these percentages are somewhat comparing apples and oranges — which could be confusing for someone who is newly diagnosed and trying to sort through all the information on treatment options.

[Kimberly]

#1071751

Ski wrote:This would be a good message to send to Peter privately as well, Kimberly.

Will do – thanks for the response!

I booked my flight to Charlotte last week…can’t wait to see everyone! ” title=”Very Happy” />

[Kimberly]

#1071752

Just got the GDF newsletter in the mail, and it looks great! I am bumping up this original message, because I noticed that the "effective" rate for ATDs is still being listed at only 20-30%, compared to a 90-95% "resolution" rate for RAI or Thyroidectomy.

I think it would be helpful to patients to clarify that the 20-30% is for full remission for the disease. Based on the comments we heard at the conference from Dr. Cooper, keeping hyperthyroidism at bay by taking a low maintenance dose is a valid option for some patients, so this should increase the "effective" rate.

We also heard at the conference that the Graves’ autoantibodies can remain elevated for up to 5 years in patients following treatment with RAI. So I think it would make sense to clarify that the "resolution" rate for RAI applies to the hyperthyroidism, rather than the autoimmune component of the disease.

The way the wording is now, I think that it would scare off some patients for whom ATDs might be a valid choice. Personally, I’m not sure I would bother starting on a treatment course that was only 20-30% effective!

I would be happy to post some draft wording for review, as I am unemployed at the moment and have time on my hands! ” title=”Razz” />

Thanks!

[James]

#1071753

Hi Kim,

I fully understand what you are talking about, that is the confusion that often arises when a patient is told a treatment is only 20-30% effective. I have personally seen many patients scratching their heads in wonderment when given this information. In fact, a patient I was recently speaking with was given this information with very little more to go on. Her interpretation was, “I only have a 20-30% chance of feeling well again with the ATD option”. It makes sense, 20-30% effective, with “effective” being interpreted as “feeling normal again”. If I were her, and that was my interpretation, I certainly would not want to wager against those odds. We know that most patients do respond well to ATD’s and for whatever personal or medical reason, may decide to go that route. Without given the full picture that we DO (in most likelihood) get well again no matter what option we choose. I can see where patients could misinterpret or become discouraged by this. I think it is the job of our medical professional’s to disseminate this information in such a way that it is fully understood by the patient. Not every patient is as fully informed as they should be. I think organizations such as the NGF can (and should) help people better understand their options better. Thanks so much for brining this to light.

I personally have seen so many statistics over the years that my head is spinning. Some people seem to fall into a certain category others do not. What is more important (in my opinion) is not so much the rate of remission, but rather getting well (euthyroid again). Remission of course should be ultimate goal, but if it isn’t achieved, many of us have the option to continue anyway or find another medically acceptable option at a later date.

Thanks again Kim for your thoughtful insight.

Best regards,

James

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