Graves disease, methimazole, weight gain

has anyone out there NOT gained weight on this Rx?

[AR-10]

Me.

I took it for 9 months without weight gain.

Some people lose weight with hyperthyroidism.
Some people gain weight.

It is assumed that a hyper person will lose weight and a hypo person will gain weight. It doesn't always work that way.

Sorry that it is becoming a problem for you.
It's the disease, not the medication.
Well, it could be the medication if it is making you hypo...

[kmcgonnigal]

the methimazole didn't make you gain weight? What was your daily dose? Mine is 30mg but I'm only on my third day.

[skeeterknitwit]

I've been on a REALLY low dose (10 mg) for about 2 weeks.  I actually lost 3 lbs.  I think it's because without the meds, I was just sitting still most of the day to keep my heart from racing.  Now I feel more functional.

[cbread]

My theory is hyper messes with your brain's ability to feel full and even when your body no longer needs 4000 calories a day, it still wants it. I have tried weight watchers online with some success in battling the gain and it helps to write everything down- it's amazing how much I want to eat vs what my body really needs.  

[skinnynot]

I have been on PTU and Methimazole for about 5 years and finally have decided to have RAI therapy to control my hyperthyroidism. When I was diagnosed I told my doctor that I felt like I still had my pregnancy appetite and could not lose the baby weight.  I think the skeeterknitwit had it right about the sitting around all day to keep your heart from racing.  There would be days that I have great intentions of exercising and watching my calories, but I just felt so nervous and out of breath because of my heart beating at 140 beats per minute.  I have struggled with the weight gain for 5 years and I am hoping I will feel better after the RAI and I can get back to exercising and having more energy.  It is good to know that other people struggle with the same problem.   With this condition, I always thought I was supposed to be skinny.  

[karenee]

Yes-I am having terrible troubles with my weight!  Before I had Grave's disease, my weight was very predictable...if I cut calories, I lost weight.  If I over-induldged, I gained. It was pretty easy to control.

With Grave's, before I was diagnosed or medicated, I lost a little weight, but was VERY hungry all the time.  Once medicated, I stabilized UNTIL my dr. upped my dosage too much.  Within 2 months, I gained 20 lbs-no matter how little or healthfully i ate!  My hair fell out in clumps and I had 0 energy to the point of being groggy (in essence, I was hypothyroid due to the methimazole) I had to beg my dr. to run my labs early so I could adjust my dosage. (the dr. told me my hair loss was unrelated-what a joke!  Every website says it is a side effect of too much meds)  

I feel better and my hair is growing back, but I can't lose weight.  I joined a gym and have a personal trainer and I'm STILL gaining!  I hate this.   It has all been very frustrating.  Everybody reacts differently to the illness and medications, so if you are having troubles, don't let anyone tell you that it's just you and not the meds or illness.  YOu know your body and if something isn't right you know.  Hang in there!

[cyndi817]

i totally relate...I have been on tapizole for 10 months...I have been working out really hard for past 4 months.  I have not lost 1 pound...totally frustrated.

[gimel]

What tests are being done for you to determine if your medication dosage is correct?  If the testing does not include Free T3 and Free T4, you really don't have enough info.  Do you have symptoms other than inability to lose weight?

[frustrated312]

I have been on Tapizole for 11 months.  I gained most of my weight the first 4 months...36 lbs to be exact.  Since then I have been walking 4 days a week 4 miles so that is 16 miles a week plus going to gym the other 3 days and working out for 1 hour-to 1 1/2 hours.   I have not lost a pound in 7 months.   If I dont keep with my 16 miles a week and my workouts at gym I will gain several pounds a week.  I am up to 43 pounds total to date.  So frustrated! I get bloodwork every 3 weeks but this is taking forever and very depressed because of it.   Anyone have any inspiring news that this will get better soon?  Or if this has happened to you and now you are losing weight and love is wonderful.

[Rockamama]

I have had Grave's Disease for 3+ years. I was at 158 lbs. when I started getting sick. I was overweight and had started dieting when my illness started. At my worst, I got down to 89 lbs. This was after 3 months of being on Methimazole. After that I went up to 110 lbs. and stayed at that weight for the last year and a half. I have just now started gaining weight and am up to 128 lbs. and gaining. I am going crazy over this sudden weight gain! My dr. has been stringing me along over the last 2 years with starting radiation. I know absolutely nothing about it and am getting no clear advice from him. I would like to stay in the 120 lb. range, but my weight gain appears to keep on going. Will I lose weight after the radiation? I am far from shallow. Really. It's just the first time in my life it's been easy to keep the weight off and I don't want to go back to bring overweight. All I hear from my dr is that it's better to be overweight than underweight. For my body type I should be 120 lbs.! Help! I need some advice from someone whose been there, done that!

[Rockamama]

I have had Grave's Disease for 3+ years. I was at 158 lbs. when I started getting sick. I was overweight and had started dieting when my illness started. At my worst, I got down to 89 lbs. This was after 3 months of being on Methimazole. After that I went up to 110 lbs. and stayed at that weight for the last year and a half. I have just now started gaining weight and am up to 128 lbs. and gaining. I am going crazy over this sudden weight gain! My dr. has been stringing me along over the last 2 years with starting radiation. I know absolutely nothing about it and am getting no clear advice from him. I would like to stay in the 120 lb. range, but my weight gain appears to keep on going. Will I lose weight after the radiation? I am far from shallow. Really. It's just the first time in my life it's been easy to keep the weight off and I don't want to go back to bring overweight. All I hear from my dr is that it's better to be overweight than underweight. For my body type I should be 120 lbs.! Help! I need some advice from someone whose been there, done that!

[goolarra]

Do you have recent thyroid labs that you can post (please include reference ranges)?  Maybe you are just a little overmedicated and on the hypO side at the moment???  What meds do you take?

Weight gain or inability to lose weight is usually a symptom of hypO.  If your ATM dose is too high, it can make losing weight difficult.  After RAI, you will be hypO for the rest of your life and dependent on replacement thyroid hormones.  Once meds are adjusted properly for you (and that can be a protracted process), you should be able to maintain your weight, but I'd be lying if I didn't tell you a lot of people still have a hard time.  

Read, read, read about RAI and make sure you understand all the implications.  

[kimmjmc]

Goolara, your reply to rockamomma makes sense.  RAI would have nothing to do with weight loss following treatment for hyperthyroidism.  In fact, by inducing hypothyroidism, I would think RAI would in the long run be more apt to cause weight gain.

I started treatment for Graves disease with methimazole in 10/2012 and have gained 20 lbs., even though I don't feel the need to eat a fraction of the calories I was wolfing down before treatment.  Before starting methimazole, it was nothing for me to eat an entire 8 oz. bag of potato chips almost every evening and not gain a pound.  I was starving.  Now I eat sensibly, mostly healthful foods just as berries, whole wheat bread, yogurt, etc., but continue to gain weight.

My latest labs showed TSH and free T4 within normal limits, so I'm not hypo.  Maybe being 56-years-old and post menopausal means that all of a sudden, with normal thyroid function, I need to eat no more than 1400 - 1500 calories per day now just to maintain weight.

As fat as I am now, however, I would not want the untreated hyperthyroidism back with the 170/110 blood pressure, thrilling heart rate, and crushing fatigue and exhaustion.  I may be lugging around an extra 20 lbs. now, but at least I can get out of bed at 5:30 a.m. and go to work everyday.

[goolarra]

Yes, I'm sorry if I was unclear.  Hypothyroidism is the usual cause of weight gain/inability to lose weight, whether the hypo is induced by surgery, RAI or ATMs or occurs due to disease or indeterminate causes.  RAI would do nothing to make weight loss any easier.  Anything that makes you hypo  (which slows your metabolism) makes it more difficult to lose weight, especially when meds are not adjusted properly.

Please post your latest FT3, FT4 and TSH with reference ranges.  Doctors often think that we all should be comfortable anywhere in the ranges, and nothing could be further from the truth.  Just being within normal limits is not enough to relieve symptoms for many of us.  Do you have any other hypo symptoms?

Rule of thumb on calories is that a fairly sedentary person can eat about 10 calories per pound per day and maintain current weight.  

Yes, I've had the "thrilling" HR...I have to laugh, although it's not funny.  Better than an amusement park ride for getting the heart going, though, isn't it?  LOL  I agree...I would not trade hypo for hyper any day.