[apaul]

#1059864

I’ve seared the forum and am not finding an answer to my question so I’m hopeful someone can help. I’m curious about how to go forward with my treatment. I’ve been taking Methimazole for almost a year and my symptoms have been fairly well managed. However as my dose has gotten lower I’ve felt funny. My labs show my thyroid levels are on the low side of normal. Right now I’m feeling cold most of the time and lethargic (which is not normal for me). At the same time I feel a bit jittery and have to be careful to eat every couple of hours, and I’ve had a couple of nights where I was too anxious to get to sleep. Splitting my meds into am/pm doses helped with that, but… I would love to try for remission, but feel worse in the past month or two than I have in the previous 10 months. I asked my Dr. to check my Trab levels to know what they were doing and they are still high. Four times the normal range limits and only 4 pts lower than when I started. From your understanding, does this mean I’m unlikely to go into remission?
Thanks,
Amy

[Kimberly]

#1178339

Hello and welcome! It’s difficult to predict which patients will or won’t have a lasting remission. In general, overall factors that *reduce* the chances of remission include male gender, smoking, presence of a large goiter, and high levels of antibodies. Your own doctor is in the best position to help you predict your chances of remission, but even that isn’t an exact science.

There has actually been some research into whether specific genetic markers might predict chances of remission, but in a study that was published recently, genetics had *less* predictive value than antibody levels, smoking, and presence of a goiter.

(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/thyroid-physicians-professionals/thyroid-disease-information/clinical-thyroidology/march-2013-volume-25-issue-3/clin-thyroidol-20132553-55/

As a side note, the current medical guidance recommends a period of 12-18 months on anti-thyroid drugs. (Although it does leave the door open for longer-term use in patients who prefer this approach). Since you are just under a year, it might be too soon to tell at this point…but determining next steps is definitely an important decision that you will want to discuss with your doc.

Take care!

[apaul]

#1178340

Thanks Kimberly.

[Momof5]

#1178341

I’m curious if you know the answer to this (maybe not). When the study indicates “high levels of antibodies” does this mean when you are first diagnosed or when you are attempting remission? So, for example, you have high antibody count when you start, but you have small or negative antibodies after being on medication, I am assuming that is good news for remission.

I wonder too, if docs in the US are just not paying attention to the antibodies before telling people they are in remission and this is why our remission rates are lower than anywhere else.

[Harpy]

#1178342

You may well be right on your last point, here in Aus there is a reluctance to test for AB’s during treatment, only considered as part of initial diagnosis.

As for the AB levels and remission, seems it is related to both the level of AB’s at start of treatment as well as the pattern during treatment, a consistant decline, rather than fluctuating AB’s level improved rates of remission.

This thread from last year had some discussion and links on the AB’s, extended ATD treatment and the Block and Replace protocol:
http://www.gdatf.org/forum/topic/42708/

[Momof5]

#1178343

I’ve read thru that thread more than once in my quest for info. Thanks! My endo seems pretty good and she is actually pushing for me to stay on the pills vs deciding on another treatment right now. She says I have some positive things in my favor (no goiter, non smoker), but I do have high antibodies. She wasn’t initially going to test for them, but I asked and she said ok. She Stoll wants me to stay the course of meds (and said an 18-24 month protocol for now) and said we can talk more at our next visit. But, to me, it is hard to decipher the studies because they don’t really indicate at what time they are doing the antibody levels. If high antibodies at.the start dooms remission, then what’s the point (just speaking rhetorically)? To me, it would seem that the antibodies at the end of treatment are more what counts. Maybe I’m getting it confused.

[Kimberly]

#1178344

@Carrie – The current medical guidance relies on antibody levels at the end of treatment, when it’s time to make the decision whether to withdraw the meds.

This guidance has just come out in the last couple of years, so it will be interesting to see if overall remission rates for the U.S. improve in future years, as more doctors become aware of this information.

[Harpy]

#1178345

It’s all in probabilities and as always there are confounding factors.
From those studies what I have deduced is:
Those with lower antibodies at diagnosis, and show steady decline during treatment, do not stop ATD’s until AB’s are well into range have the highest chances of lasting remission.

Regarding more difficult cases, like very high AB’s at diagnosis, fluctuating levels during treatment, it may be that they just need to extend treatment for a longer period or there may be other confounding factors aggravating the GD.

Once my partner crossed the two year mark, the Endo effectively said your Thyroid will never return to normal function, because that’s where the her (Endo’s) experience ended, that is their cut off point, and we had a respectful “Agree to Disagree” arrangement from there on.
Another three years of treatment and TSH just kicked in and has been completely normal for 18 months now.
Unfortunately we could not get AB’s tested often enough to determine if there was a pattern, but they were very high at diagnosis, so maybe we were more in the difficult range.

All the studies look at different things, it would be good to see a study put together to use a multipronged approach, taking the best guidelines from a number of studies and puting together a multi faceted approach, but unfortunately that goes against scientific protocol, which is always trying to isolate a singular variable to determine a “Cause & Effect” relationship.
This may be the very weakness of the current state of knowledge re medical treatment of autoimmune diseases, that we are dealing with multiple Causes and Effects that have complex interplays between them, hence there is to many anomolies in treatment protocols and we are left with a state of confusion.

When we look at simple pathogenic infections, they very much behave in a singular cause and effect, although there are some anomolies there too, but neverthless in most cases it is possible to treat very simply with a singular protocol.
Autoimmune and other Chronic diseases seem to confound the singular isolated hypothesis and maybe we need to be looking at these conditions in a more holistic sense, i.e. whole body treatment tailered to a particular individuals conditions, using a variety of protocols in unison.

[Momof5]

#1178346

Thanks, Kimberly. You are a blessing.

[Momof5]

#1178347

Sorry, Harpy. I missed your post before. Thanks for the info too!

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