[Sooza]

#1018111

Hi all, this is my first post here. This board has been a great resource since I was diagnosed 4 months ago, thanks to all who keep it up and running!

Anyway I was just curious to hear from people who are in/have been in remission. How does your doctor decide when to try for remission? Are there any signs along the way that you are likely to achieve remission?

After 4 months of being on methimazole my TSH levels have gone to normal range! My TSH level was at less than 0.001 when I was first diagnosed, and now it is up to 1.9! Last test in December it was still lagging, 0.01 I think it was. My T3 and T4 levels were in normal range after about 6 weeks of methimazole (T3 was always normal but T4 was so high they did a repeat analysis to check it was right!), and my dose was reduced from 20mg to 10mg because of that. I have read on these boards and other places online that some people take years to get a normal TSH or are still waiting, so I am excited that mine is already normal. Does this mean I have a good chance of remission?

Another question I have is, has anyone had problems with kidney stones/bladder infections? In the year or two before I was diagnosed I kept getting kidney and bladder infections and pain which was put down to kidney stones and I wonder if it is related. Also my aunt who has Grave’s has bladder cancer.

Also curious to know if anyone had changes in their fingernails – about 2 or 3 years ago my nails suddenly started looking awful with raised vertical ridges on them, and I noticed that I didn’t have moons on my nails anymore. I always thought it was some sort of vitamin deficiency (though taking vitamins never helped) and since taking methimazole the moons on my thumbnails have reappeared!

For those people worried that they won’t be able to get pregnant because of their thyroid, I just thought I would let you know that 3 or 4 of my aunts and my grandmother all have/had thyroid issues (some started out hyper, others hypo) and they have all had 5+ children! My grandmother had graves and she had 8 children, 2 of them in her 40s. And they were all diagnosed and treated in the 70s or earlier so no doubt treatment is better these days! So don’t lose hope, it is certainly not impossible to get pregnant with thyroid problems:)

[Kimberly]

#1062747

Hello and welcome to the boards!

We’re not medical professionals on this board – just fellow patients – so I can’t speculate on your chances for remission. However, the fact that your TSH is back in the normal range is great news! Not all doctors do this, but my own endo relies on antibody testing to determine when patients should come off the meds. I’ve been on meds for 3 years, and while my thyroid hormone levels are good, my antibodies are still high. My doc believes that if I were to go off the meds at this time, my hypER symptoms would return again. Not every doctor agrees that antibody testing is useful, though.

There is a condition called “Plummer’s Nails” where the nail actually separates from the finger; this is often associated with hyperthyroidism. Hair/nail changes can also in general be a sign of thyroid hormone levels shifting in one direction or another.

I’m not familiar with kidney/bladder issues being related to Graves’, so hopefully, someone else can chime in on this one.

Take care!

[snelsen]

#1062748

Hi, Bobbi just wrote a post a few minutes ago saying that a remission to be called that, is at least a year. And you can ask you doc. I have been hoping you would hear from others on the board to share their experiences with remission.
Shirley

[Bobbi]

#1062749

Hi, Sooza:

To answer one of your questions, having "normal" levels of thyroid hormone while on the medication is to be expected. The drug you are on acts as a chemical block to the production of thyroid hormone. The juggling act your doctor is engaged in involves giving you just enough of the medication to keep you "euthroid" (i.e. normal levels of thyroid hormone). If you take too much of it, it will make you hypothyroid; if y ou take too little of it, you will remain hyperthyroid. So, with the "just right" dose, you will have normal levels of thyroid hormone.

Having normal levels again does not mean you are in remission. And how would you know if/when you were in remission? Basically, it goes back to that just right dose. If, over time, you need less and less of the drug to maintain normal levels of thyroid hormone your doctor will test taking you off the drug. If you can maintain normal levels for a year or more WITHOUT medication intervention, the medical community calls it "remission." That is a technical definition of course. You will see, online, in forums like this one, patients sometimes talk about being in remission when they’ve only been off the drugs for a few weeks. I am guessing that the reason our doctors may have a stricter definition is because stability of our thyroid levels is crucial to our health. Having a few weeks here and there of normal levels without drug intervention really isn’t stability. Yo-yoing between normal and hyper, or hyper and hypo, etc., is not good for the body.

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