[Carito71]

#1060442

Hello,

I would like to hear from those of you who have gone into remission. I have some questions and I was wanting to see if you can share with me your experiences.

These are my questions:

(1) How did you know you were in remission?

(2) Was a TSI test or any other immune system test done in order to determine if you were in remission?

(3) What was your last dose amount before discontinuing the medication? What were you on?

(4) How long did you stay in remission? Or how long have you been in remission?

(5) How long were you on medication before going into remission?

I would love to read your experiences regarding these questions if possible.

Thanks!
Carol

[Kimberly]

#1182644

Hi Carito – I know that we have members here who have experienced remission, but they generally don’t check in as frequently.

You might use the “Search Posts” feature for “remission” to read some of their stories. (You do have to be logged in to use the search feature).

Hope all is well!

[LaurelM]

#1182645

Hi Carol,
I had about a 6 year remission. I was on ATDs for a little over a year after my first diagnosis. I then got pregnant and was able to taper off within about 4-6 weeks into the pregnancy. This was probably not the most common way to remission LOL. I came out of remission a couple of years ago and tried ATDs again. This time we had more difficulty regulating my levels and I opted for a TT last August. I don’t think my story is really going to get you the answers you are looking for but I would be happy to answer any other questions you might have.
Laurel

[Carito71]

#1182646

Kimberly, LaurelM – thank you for your replies.

LaurelM – sorry to hear that you came out of remission. Hope all is good now after your TT. Congratulations on becoming a mom.

[missygail]

#1182647

I was diagnosed with Graves in 2012. I took 4 months of methimazole, starting with 10mg and by the time I stopped I was taking 2.5 mg twice weekly. I stayed in remission for 22 months then became hyper again. I went back on methimazole for another 4 months and did the same dosage. I have been in remission since August now. Hoping for a longer remission this time! I knew I was in remission because the Dr did my labs right before I went off then once a month for 3 months. If my levels stay normal for 1 year they consider it remission. Hope this helped!

[Raspberry]

#1182648

I was on methimazole for over two years and had gotten down to 0.625mg/day and my FT4 and FT3 were still too low for me to feel okay, so endo declared remission and stopped it. I could not get her to order a new TSI or Trab test to get her to verify my antibodies were actually in remission though so honestly it may never have been real remission. It lasted about three months and then major life stressors drove the TSH all the way back down but fortunately I caught it before the thyroid levels got too high. Still felt crazy though. I had to move so now I have a new endo and I’m hoping to form a better relationship with this one.

My two cents, most “remissions” aren’t remission unless the antibodies are normal. Graves’ has blocking as well as stimulating antibodies, so you can still be sick but have the right balance to make the thyroid levels look right. I’ve read it often takes about four years on ATD’s for a more lasting remission so I’m not too bummed….well okay a little.

My situation now is that my life circumstances don’t support surgery so I’ve got to make that methimazole work period…..so I will

[JEH]

#1182649

I was originally diagnosed in 1998 and was put on Tapazole along with supplemental T3 and T4. I don’t remember the dosages as it was so long ago. I stayed on that until around 2006 when I started treating with a new doc who suggested we try stopping all the meds to see where the gland was. I agreed and there was no discernable change to my health by stopping everything. However, from the beginning all my symptoms had not been eliminated, only the most damaging ones. I was fairly comfortable without any meds, even though I carried a bit more weight, was slightly constipated, and quite heat intolerant. Last year, at the urging of my husband, I went back to see my original doc. He diagnosed me as being hypo from the lack of meds and prescribed Synthroid at 75 mcg/day. I have been taking that since August 2014 and I believe there has been some improvement in those few remaining symptoms so I will stay on that dosage indefinitely.

Each person is so different that I doubt any one of us can be of much real help to you, but I certainly understand that hearing our stories can make a difference. I wish you the best of luck with your thyroid journey.

Jane

[butterfly007]

#1182650

In total, I was on carbimazole (methimazole) for over 2 years.
It took well over a year of meds to even get my levels into the normal range, then a little longer to get them to stay there.
After about 1 and a half years on meds, when my levels became stable ( t4 levels were on the low side of normal and only just in range, tsh also low, but consistent ) I started very slowly reducing my meds by super small amounts. After 6 months of this, I got down to a quarter of a 5mg tablet, every second day. My t4 was still low/normal and my tsh was in range, so I stopped tablets completely.
There were no antibody tests or any other tests done, and when I asked my doc to be tested he said I was in remission and for that reason refused to test me!
I have been off meds for well over a year now. My t4 hasn’t budged from low/normal and is only just in range, my TSH is also still at the very low side of normal, but they are both consistent each time I have a test.
I have no idea why both my t4 and tsh are at low end of scale – doesnt seem right. I’m just happy to be med free and though I still get symptoms I am sooo much better now than when I was diagnosed and have learnt to live happily even with some symptoms. I believe patience and lifestyle changes are the key.
– Good luck!!

[annetta]

#1182651

Hi Carol,

I was diagnosed in 2010, and I took methimazole for about 2 years. The initial dose was 20 mg/day, and the last dosage I remember taking before remission was 2.5 mg. I don’t remember if I had to take it daily or every other day.

My doctor looked at all my lab results (T3, T4, TSH, anti-bodies) and said I could stop taking the methimazole. My lab results had been normal and stable for a long time (10 to 12 months if I remember correctly).

Unfortunately, in October 2014 I was diagnosed as having relapsed. My last blood test prior to October was in early January 2014, so I relapsed sometime between January and October. A doctor once told me that hyperthyroidism is preceded by hypothyroidism. Looking back, I now realize that I was having symptoms of hypothyroidism since April. I was tired, had trouble concentrating and brain fog. In September, I started having muscle and joint pain, but I didn’t think it was Graves because these are not the usual symptoms. In fact, I didn’t have any of the usual symptoms. Since late October I have been taking 20 mg methimazole daily. My doctor wanted me to have RAI because I only have a 20% chance of long-term remission with the meds, but I refused. I want to try the meds one last time.

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