[Bobbi]

#1063492

Antibody levels can rise and fall for no well-understood reason. I am sure that I had at least one episode of hyperthyroidism, which remitted after a few months, only to return again three years later. So it is possible you could be experiencing a lowering of your excessive thyroid levels that has nothing to do with taking the antithyroid drug. Basically, ALL the doctors can go on is whether or not taking methimazole, or whatever drug you are on, controls your thyroid levels in the normal zone. If taking even the smallest dose of it makes you hypothyroid (another disease state), then they will take you off of it.

I understand that you are concerned about going hyperthyroid again, with all it’s problems. It can — most likely will — happen again, if you have Graves. All you can do is make sure that a qualified doctor is checking your thyroid levels at reasonable intervals. I do hope things work out well for you.

[marta1234]

#1018246

I am on MMI since mid july – 3.5 months. I started from 30 mg down to 10 mg , then 5 and currently to 2.5 mg. My latest results shows that free T3 and free T4 just a bit below middle of normal range , however TSH is high 4.2 ( 0.35- 5).
My endo told me that if my next results on 2.5 mg of MMI will be as good , he wants me to try to go on remission. I feel like I am still not balanced, I still have some symptoms – my levels quickly dropped to low normal ranges and now they slowly moving up when I am reducing the MMi dose.
My next results are in 6 weeks and that will be only 5 months on Methimazole.
Should I be concerned?
If yes, how should I convince my endo to wait longer?
Should I feel balanced before going for remission?
I have never had antibodies tests done , so I assume I should ask him to run it before agreeing to stop Methimazole. How low antibodies results should be to determine if I am ready for remission? What kind of antibodies should be tested?

[Ski]

#1063493

TSI antibodies are the ones that are unique to Graves’ Disease, and there is some correlation emerging in the studies between lower levels of TSI antibodies and higher incidence of remissions, so that may be helpful information before you decide (with your doctor) to stop taking the meds. The typical course of ATDs is to go for at least one year, maybe even two, before discontinuing the meds and attempting remission. Doses can be very, very low (5 mg every other day maintains things for some patients), but longer periods before stopping can be helpful. Keep in mind, a clinical remission is a period of longer than one year with no medications whatsoever (ATDs or replacement hormone), so even if you end up with a remission that lasts a little less than a year, it’s still a fairly long period of time for YOU.

In the event that a remission does not happen for you, though, keep in mind that patients can be maintained longterm on very low doses of ATDs.

[Kimberly]

#1063494

Agree with Ski that it’s worth talking to your doctor about the TSI test. To my knowledge, there haven’t been studies that specifically looked at this, but just from hearing stories from other patients (and a couple of docs), a longer-term remission may be more likely when (1) antibody levels are low and (2) the drug is withdrawn slowly…even if it means that you have to split pills and/or go an every-other-day regimen.

If antibody levels are still high, but thyroid levels are heading towards hypO, I know of a small number of patients whose doctors will add in a *small* amount of replacement hormone to their regular ATD dosing. The thought process here is that the ATDs have a suppressive effect on the immune system…so that a future remission is more likely if you can prolong the time on ATDs. (Although the idea that ATDs directly work on the immune system is a hotly contested subject…different studies have drawn totally different conclusions). Of course, this is a decision that has to be balanced against the potential for side effects…although the good news is that the worst of the side effects *usually* occur during the first 90 days of treatment and at higher doses.

Best of luck to you!

[marta1234]

#1063495

Thank you for your opinion. I will ask my doctor for all possible tests.
Overall I still have some hyper symptoms, although It has been 3.5 months on MMI . I still have higher pulse and I feel some anxiousness. I think I will benefit from taking MMI for longer . It has been few days I am on 2.5 mg of MMI and I feel not the same – every time when I change a dose I have few “difficult “ days.
I wonder if anyone even heard about the possibility to start remission after 5 months ? I can not get over the thought that I will start the remission and most likely fail.
Do you know what to expect at the beginning of remission? Watch for the symptoms? It will be difficult as my symptoms has never gone completely .

[Kimberly]

#1063496

marta1234 wrote:I wonder if anyone even heard about the possibility to start remission after 5 months ? I can not get over the thought that I will start the remission and most likely fail.
Do you know what to expect at the beginning of remission? Watch for the symptoms? It will be difficult as my symptoms has never gone completely .

Hello – In all of the literature I have seen, the "standard" for time on ATDs is one to two years. But, of course, every patient is different. (Personally, I’ve been on ATDs for 3 years).

If your symptoms haven’t fully resolved, I would definitely discuss this issue with your doctor. But yes, patients who achieve remission do need to get tested periodically. They also must be aware of their symptoms and get tested ASAP if they appear to be shifting hypER again — even if they aren’t yet due for their "regular" tests. Although I’m not in remission, I can tell when my levels are heading hypER due to an increased heart rate, insomnia, and trouble catching my breath.

Ultimately, you and your doctor will need to decide on how to proceed…but you definitely want to be comfortable with the option that you select.

Best of luck to you!

[marta1234]

#1063497

Thanks Kimberly
I would like to ask you a question I hope it is not personal
What will determine if you will be ready for start remission? Is your blood results not there yet? Or antibodies are too high? Why have you been waiting for 3 years?
I just trying to bring some ideas how to convince my doctor to wait with remission.
Unfortunately I dont find my endo perfect, I am from Cananda and it is not easy to change endo here ( months of waiting time for appointments ) but he claims that all my symptoms are not thyroid related since the my lab results felt into normal ranges 2 months ago. I had nausea for two months that now is suddenly gone and he claimed that it is not GD as well . I slowly see the improvements and I know he is not right.
I am trying to gather as much information as possible then

[Ellen_B]

#1063498

First of all I don’t think I am going to say anything different than what has already been said.
No available test can predict whether a patient will go into remission. None are sensitive or specific enough. One doctor says if the antibody test (thyroid-stimulating antibody) is positive the chances of remission are very low—but even patients with negative tiders have a 20% to 50% chance of relapse.
As far as the optimal duration of therapy goes doctors used to think that the longer a person was on antithyroid drugs the greater the chance of remission but it turns out staying on the antithyroid drugs beyond a year to a year and half does not increase the chances of a remission. If that is the case staying on the antithyroid drugs a year seems reasonable.
It is more sensible to taper the antithyroid drugs off than to stop then abruptly. Relapses if they do occur are most likely to happen within the first 6 months. After stopping the drugs thyroid hormone levels should be checked every 4 to 6 weeks.T3 should be monitored along with T4.
I can well understand your desire to be given a chance to express your feelings to your doctor on the subject of your being taken off of your medication at this time.
Ellen Brightly
Administrative Assistant
Graves’ Disease Foundation
Toll-free – (877) 643-3123
400 International Drive
Williamsville, NY 14221
Email: Gravesdiseasefd@gmail.com
Website: http://www.NGDF.org <http://www.ngdf.org/

[James]

#1063499

As people with Graves’, I think we often get overly caught up in GD statistics; remission rates, likelihood of relapsing after “x” amount of time etc etc. so much so that we obsess needlessly of what could be or not be and what is yet to come.

There is nothing wrong with basing medical decisions in part on statistical data, but to put things in perspective, we have to remember that everyone is unique and I have learned over the year from talking to numerous GD patients is that many times things happen to individuals that seem to be well out of the supposed “statistical norm”. I have seen too many conflicting studies on remission rates over a given period of time, so I personally don’t pay that close of attention to that kind of information anymore. What is more important in my opinion is that you are comfortable with your treatment choice and more importantly comfortable with the Dr. attending to you with that treatment choice.

One of the speakers at this years conference referred to the need to move toward individualization of medicine. Meaning that it shouldn’t be a one size fits all approach to medicine. Every patient is different and the disease is unique to that individual and treatment should be tailored to both the medical needs and desires of the patient, and not necessarily the biases of the attending physician. I support this approach wholeheartedly.

Concerning TSI testing and remission. This test was never offered to me during my past treatment process, nor was I even aware of it at the time. It is true that antibodies can rise and fall as there are still too many unknowns concerning the immune system, but it is still a very important test to those of us on ATD therapy in order to determine the timing of weaning off of the meds. I wasn’t fortunate enough to have TSI testing done when I probably really needed it. I just had the standard tests (TSH, T3, T4), and went with the way I felt and intuition mostly. If I were to relapse, I would definitely add this to my arsenal of prescribed tests instead of just grasping at straws. I was almost always disappointed by coming off of the meds too quickly.

Hope this helps somewhat.

James

[saumya]

#1063500

but he claims that all my symptoms are not thyroid related since the my lab results felt into normal ranges 2 months ago. I had nausea for two months that now is suddenly gone and he claimed that it is not GD as well . I slowly see the improvements and I know he is not right.

I’d be highly tempted to sit him down with some biology textbooks and have him explain exactly what GD does NOT affect. If he can find something in the body that neither autoimmune abys nor thyroid-based hormones can alter, he might be up for the Nobel Prize.

Recently, my internist mentioned that GD w/o TSI can cause headaches; which were happening 8 months before my ANY of my numbers became "abnormal".

[Kimberly]

#1063501

marta1234 wrote:Thanks Kimberly
I would like to ask you a question I hope it is not personal
What will determine if you will be ready for start remission? Is your blood results not there yet? Or antibodies are too high? Why have you been waiting for 3 years?

No worries on the personal question — we are all part of the GD family. ” title=”Very Happy” /> My levels are currently stable, but the last time I had a TSI test run, the numbers were still in the 300s. The Physician’s Assistant that I see in my endo’s office believes (and I agree) that I would relapse into hypER territory if my meds were withdrawn at this time.

But as James eloquently stated, each patient is a little different…and we all have to find our own path. (With our doctor’s help, of course!)

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