[James]

#1066035

Being stable for a period of time deserves celebration. Being in a position where meds worked effectively for you and being healthy through the process is also worth celebrating. Take time to embrace and celebrate your health achievements along your journey. Take one day at a time and appreciate your good health, not worrying so much about what might or could happen as we have no control over that. I was in your position more than once over the past 16 years. I was able to respond well to meds each time and being able to stabilize quickly, but I didn’t know that would be the case at the time. I found that extra anxiety brought on by worry often mimicked some of the Graves’ symptoms; so as you have pointed out, try to stay at peace and ensure that you are monitored by your Dr. closely during the periods you are off of your meds. Above all, make sure (with your Dr.’s help) that you are in a position to come off of the meds in the first place. My experience was that coming off too soon yielded less than desirable results.

Wishing you the best!

James

[Ski]

#1066036

We have recently heard that your chance of attaining remission is better if your antibody levels are low ~ typically we don’t need to test antibody levels since they tend to fluctuate with no well-understood pattern, but when you’re initially going off the meds, it turns out that’s a really good time to check them. If the antibody levels are low, you’ll be more likely to achieve and maintain a remission. If they’re high, you may want to stay on the methimazole until they are lower. As I said, no one understands precisely why they fluctuate, so it’d be hard to know exactly when to check, but since I’m sure you want the best chance of success, you may want to ask the doctor to check them now and see what result you get.

A *true* remission is defined as a period longer than one year where your thyroid hormone levels remain normal without any intervention (no ATDs, no replacement hormone), and if you want to believe the statistics, only about 40% of ATD patients achieve remission. There is (as always) some argument as to the population that was tested in order to reach this conclusion, but that’s the best info we have for now. That means 60% of ATD patients will attempt remission and will not reach it, which means that those patients experience another episode of hyperthyroidism within one year of going off the meds.

Remember what it feels like to be hyper? Well, if you start feeling that way again, make sure you have a way to get your labs run. You don’t want to let it get out of hand. A standing order at the lab is the very best way to handle that, but make sure you let your doctor know that you will have some "check" system so they feel comfortable giving you an open order. Perhaps you can tell the doctor that you’ll call to discuss your symptoms before having the labs done, something like that ~ some doctors are VERY hesitant to leave standing orders because patients end up running to the lab every few days, which is expensive, and also not productive.

If you end up going back on ATDs because you fail to reach remission, the odds are even smaller that you’ll reach remission a second time, but we have been told that a longterm, low dose regimen of ATDs should be no problem for most people. Just know that the side effect issues come up again when you start taking them after you’ve stopped for a while ~ the dangerous, rare side effects can still come up for you the second time you take ATDs, even though you’ve had one successful round with them. They usually come up early in the process (the first couple of months), so just keep your head about you and watch for them, if that ends up being your path.

I wish you luck! Come by and let us know how it’s going!

[hyperk]

#1066037

I know how you feel! I was taken off my block and replace therapy in January ’10 after a real battle to get me in the normal range and then stablized. I was given the choice of coming off the meds or staying on them. What the hay, I say? I chose the med route so I could have a chance at remission. Each time I’ve felt the hyper symptoms creeping back, I get my labs checked (every three weeks for starters). Make a log of how you feel each day, and that may help you identify if you’re going hyper again. It’s a very weird process, but so far, so good. Be very vigilant in taking care of yourself, and best of luck to you. It feels good to feel good again!

[jlw]

#1018617

I am approaching my anniversary of being within normal range… Yeah, me. I guess. On one hand I am thankful that my body has responded to the methimazole and I can try being off of the meds with the hope of staying healthy. On the other hand, I am totally freaking out. Honestly, I just got used to the fact that I am a person with Graves and this is the "new" me. Seriously within the last few months, even though my journey has been diagnosed for a year and a half – not to mention the years prior that I didn’t know. I just became at peace with it all, and now, I am approaching a whole new stage in this crazy, emotional journey. I’m scared as to what I will have to conquer next with this disease.
I am a person who likes to know what to expect. If I know my possibilities, I can prepare for what might happen whether good or not so good.
So I suppose, I am looking for some "been there, done that" advice, so I can have some idea of what might be next. ” title=”Confused” />

[mamabear]

#1066038

i am in a rush but look up tips and ticks , I bumped it up so it’s on this page. It’s about hair/skin…

I have been on PTU and was fine when going off of it. I had to watch out for triggers like pregnancy, viral infections because they can trigger me to go out of it.
Well my last "going out of remission" was back almost 3 years ago. yes when I dont feel well I get checked on top of every year in general with my regular check up.

embrace this and yes you are graves disease patient you always will be. You will always have to be careful with things that might trigger you but it all becomes second nature. I make sure everyone washes their hands when entering my home, kids and adults. I wash down things I use to not usually pay attention to. It works out great because my house is cleaner and we are healthier. It’s nothing now to just wash my hands when I enter my home. Stay away from people who have a cold and ask your friends the courtesy of telling you before they come over if they have a cold. I would do that part anyway only because I have 4 kids and dont need them all sick.

YOu will do great!!! This is a great milestone for you. I am of the mind that if I go out of remission again i will surely take PTU again and start over. I am happy that I have gotten this far and will never let sadness fill me about having to fight this thing again. It is what it is and I’m all ready for it.

Keep up the great work!

[jlw]

#1066039

Thanks for the info and pep talks. We will see what happens. ” title=”Wink” />

[Jake_George]

#1066040

Let’s hope for the best and that remission is in your future. I do however, understand your concern. Give your body time to adjust and pamper yourself for a bit. You know what to look for in symptoms, but don’t freak out. Relax, take a bubble bath, get a pedicure and chill.

Even if it does come back, life is still good and worth living even with Graves’ disease.

[Author]

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