[Kimberly]

#1064223

Hello – I believe that information is outdated…from meeting other patients both in person and online, the number of patients who have to take replacement hormone for life is probably much closer to 100%.

At one point, several years ago, docs would try to give just the right dose of RAI that would kill off *part* of the thyroid but not all of it. The theory was that if you destroyed just the right amount of thyroid tissue, that the patient would end up euthyroid (normal) and wouldn’t have to take *any* meds. Unfortunately, many of these patients ended up needing second or third doses to get their hypERthyroidism under control. In the end, they were exposed to MORE radiation than they would have been if they had been given an ablative dose (enough to completely kill off the thyroid) in the first place. So the thinking now is to give an ablative dose on the first treatment.

I would encourage you to do a search for RAI on this board and read the personal experiences from others who have been down this path. Many have bee pleased with this decision. However, many doctors promote RAI as a “quick fix” – when in reality, it can take quite some time to find the “sweet spot” of replacement hormone that is appropriate for you.

[James]

#1064224

Hello Marta,

I would have to agree with Kim in that the information you are reading is outdated.

Interesting to note though, back in 1994 (when I was first diagnosed), my endocrinologist was stating that taking a smaller dose of RAI would be an option so that I could potentially be in a euthyroid state for a period of time (note the word “potentially”). It is my understanding that typically that isn’t what would be recommended today though, for the reasons Kim stated. There is at least one or two Facilitators here that could chime in about not having an ablative dose the first time and the situation that arose as a result.

In my particular situation I decided to go with long term ATD therapy which proved successful.

James

[marta1234]

#1064225

Thank you James and Kimberly.
It seemed to be to good to be truth. Too bad!! ” title=”Sad” />

[marta1234]

#1018356

Somewhere on internet I have read that one in five patients after RAI treatment will eventually become hypo and will need thyroid hormone replacement. I was under impression that most patients/ everyone will need to take hormones forever. Can you share yours and your doctor’s opinion? Is it possible to take hormones after RAI temporary only? I am on Methimazole now and trying to stay on it as long as possible, but just in case I am researching other options.

[Bobbi]

#1064226

It is my understanding from readings I did when I first got diagnosed with GD, that the antibody attack will eventually kill off enough thyroid cells that we should expect to go hypothyroid, even if we do not do surgery or RAI. Obviously, someone like James, who has had a reasonably long remission could expect to avoid that for (at least) a long time.

As one who "cut to the chase" and has been on replacement hormone for at least 12 years, I can tell you that having to take the replacement hormone is a decent option. It works well, and gives us back our health. The only side effect issues from it are if you are taking too much (hyperthyroid symptoms) or too little (hypothyroid symptoms). Getting the "Goldilocks" dose is important. But other than that, we live healthy lives on it.

[Harpy]

#1064227

Hey Bobbi
As you inferred and I agree, when you get GD it is a lifelong relationship, not that you will be fighting GD forever, but that you will always be aware of it, whether it be the case of using replacement hormones or if you are in remission post ATD’s, either way you will always be aware and on the lookout for Hypo or Hyper symptoms and get more in touch with your body and it’s idiosyncracies.
As for the antibodies, I think the behaviour is that as treatment progresses, the AB levels drop and in many if not all cases the Hypo is caused when the AB’s leave the core of the thyroid nodes, and AB stimulated hormone production drops, then the AB’s attach to the peripheral cells and become blocking antibodies, preventing the release of hormones. In some ATD treatment protocols this is the time when replacement hormone is used in addition to the ATD medication, this is done to maintain hormone levels and also maintain ATD dose as it is believed the ATD medication also has an immunosuppresive role in reducing AB levels, this is continued until AB levels are normal. If the treatment is stopped before AB levels are normal, then the AB’s proliferate again, re enter the thyroid and cause the Hyper state to recur. This is believed to be the effect that results in the short term 3-12 month remissions. It is unfortunate that many Endo’s disregard AB levels in GD as it seems obvious that they play a key role and are an indicator of the GD position in a patient.
Not to say that the thyroid is not damaged by AB’s, but it is capable of regrowth and often does as has been seen with both RAI and even surgery where a little bit of thyroid tissue is missed and it regenerates, not to a full thyroid, but enough to produce a noticible effect.

[Kimberly]

#1064228

It was once widely believed that *most* people who were diagnosed with Graves’ would eventually suffer from "thyroid burnout." However, we had an "Ask the Doc" session at last year’s patient conference, and one of the endos who participated stated that he believes this is a myth — and that hypO symptoms are actually due to antibody activity.

The mechanism behind this antibody "blocking" activity is not well understood. As Harpy mentioned, there is one theory that the antibodies can begin binding to the TSH receptor in a slightly different spot, which will *prevent* thyroid hormone from being released instead of *stimulating* thyroid hormone production. However, the endo at this particular session believed that there could actually be a totally separate antibody responsible for the "blocking" action.

The bottom line, as Harpy stated, is that patients in remission will *still* need to remain on the alert for a return of hypER symptoms or the start of hypO symptoms…and seek treatment accordingly.

[Author]

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