[randolphj]

#1019625

I was diagnosed with graves at the end of last year; I am a 31-year old female. I went on 20 mg of tapazole and I started to gain weight (5lbs in 4 weeks) and was really tired all the time. I am very active, currently training for a half ironman and have done marathons in the past. I do not have time to feel exhausted and like I don’t have energy. In addition, I may be too crazy about my weight and although I am not the thinnest person in the world, I do NOT want to gain weight. It is one of my biggest fears and I know I am being silly and ridiculous given everything that people go through with this disease. Yesterday I had my first appointment with an endo. I had stopped taking the tapazole, with my primary doc saying that was okay because I was going to see the endo, and he said I could try PTU. He gave me a script for 50 mg of PTU a day. So my question is which drug has bigger side effects? I went to a nutritionist to get an eating program so I am sure I am eating the correct amounts and doing enough exercise. The doc said I would probably gain weight, even though I told him I never lost weight to begin with. My weight has remained the same for years and I weigh myself everyday so I know that.

I feel like I don’t want to be on these drugs if they are going to make me gain weight and feel drained all day. I also don’t want to do the RAI if I don’t have too. I know Ineed to be on something because I guess the symptoms will get worse but is it definite that I will gain weight on this drug and is there anything that can be done to stop that. I feel like I exercise enough and eat healthy but apparently that is not enough because I gained 5 lbs in a month on the tapazole. I also feel like doctors don’t understand that it is a big deal to gain weight uncontrollably and obviously it is harder to lose it than it is to gain it given they are slowing my metabolism down.

[powergrrrl29]

#1072928

You’re training for a half ironman and you were diagnosed with Graves in the last part 2008. Your doctor is okay with this. I am an avid competitive runner who came down with Graves about the same time and my doctor still won’t let me run. I just started PTU last thursday though. I haven’t really noticed any weight changes, but I’m still waiting for my heart rate to be normal without beta blockers. It is possible that your weight gain is muscle mass since with Graves you could’ve been losing muscle even if your weight wasn’t changing. I know I lost alot of muscle. I have noticeable weakness in my quads.
Five pounds doesn’t seem like much especially since you are able to do all the activities you love. If you stop taking your antithyroid drugs you could ruin your chances of remission. I guess you could try PTU, but sounds like since you are actually able to train for a half ironman that the tapazole is working. Have you had any recent labwork?

[Ski]

#1072929

Neither drug is more likely to give side effects than the other, but at first, finding the best dose for you can be a challenge. I had to take Tapazole for a short period of time, and I felt like I was gaining weight just walking through a room. It was different than any other time in my treatment, so I do understand.

Are you sure your doctor is okay with all the exercise you are doing? When you are actively hyperthyroid, that can be extremely dangerous, and counterproductive.

The most important thing to be paying attention to are your thyroid hormone levels. When you go hypothyroid, weight gain is a possibility. When your levels are normal, things should start to even out. This isn’t something that will resolve in a day, a week, a month, or sometimes even a year. Brace yourself for a LONG period of treatment, adjustment, etc. Getting your thyroid hormone levels down is the first goal, then finding the right dose to maintain a normal level is the next goal. Step by step, we get there, but patience is essential. None of us had the time to be sick. But we were. And you are. And you need to take the time to learn everything you can about what’s going on in your body right now, to protect yourself.

Taking nothing, or pursuing no treatment at all, when you are hyperthyroid, can be deadly.

[randolphj]

#1072930

Thanks for the replies. Not that I want people in my same situation but I am happy to hear I am not alone in my concerns, especially as a very active person. My doctors said to train as I normally am. Surprisingly, the training is not that bad. I do 1 activity per day and one day do 2 activities. I also have lost a lot of muscle in my quads and for as much as I run and lift I am surprised how weak they have become. I never knew that this affected muscle mass. All my docs, and I have been to 5 different docs, have said to keep exercising and that it is good for me. However, I have not had any heart or other symptoms. I would have never known I even had this had it not been for the test. I asked for it because I was getting blood work done for cholestorol and just general numbers done (so I had a history) and my sister got it when she was 30 but she had a baby and had hypo. My mom just thought it would be a good idea for me to get tested. Maybe that is why the docs say I can exercise because I have not had any symptoms?

So if I took the tapazole before and was extremely tired and felt like I was gaining weight, you think I should go back on it or try the PTU. The doctor did say they had equal effects.

I will make a concerted effort not to stop the treatment again. I just feel like I can’t take the affects of this right now but if it messes with the remission, then I will try to stay on it. I just don’t get it that if you spend your whole life trying to be healthy and eat healthy, then how can this happen.

I just had blood work done yesterday so I will call the doc tomorrow to see if the numbers were any better than when I had it done last year.

Thank you again for the advice. I really appreciate it.

[Ski]

#1072931

I know it seems extremely illogical to end up so sick when you’ve spent so much energy and time being healthy, but it really has nothing to do with that, unfortunately.

My mother-in-law felt the same way, she’s lived her life with the goal of only eating what’s right, doing what’s right ~ and was diagnosed a couple of months ago with breast cancer. Same situation ~ it has nothing to do with the way she’s lived her life. It’s another issue entirely.

Exercising while you’re hyper can actually accelerate the muscle loss, so I would be VERY careful if I were you. I’m shocked that all of your doctors have had the same advice, to keep working out as you’ve been doing. I would recommend seeing a physical therapist and being evaluated for muscle strength and mass. You could be putting yourself into a deeper hole by exercising, as weird as that sounds.

[powergrrrl29]

#1072932

Hi,
That’s interesting that you lost strength in the quads. That’s where I think I have lost the most strength too. I used to be able to squat 135lbs, now I can barely do 65 pounds. I had done a marathon (my first) and then two weeks later I noticed that even when I was running easy my heart rate would go into the 180’s and I felt dizzy like I was going to passout. That’s what prompted me to go to the doctor and get labs. And well I was hyperthyroid. Now I know it’s graves.
It is so frusturating to be an active person and have this roadblock. I have always been into competitive sports..triathlon, running, bodybuilding, powerlifting etc. so it’s a big part of my life. Well hopefully my next labs will look good and I can run again. Lately I’ve just been doing weights to keep myself from losing more strength. But I sure miss the cardio.
So far the PTU has been fine for me, but I’m on a very low dose and have only been on it for a week. Well whatever drug you choose I wish you luck with it and hope you end up with a lifetime remission.

[Ski]

#1072933

Hyperthyroidism steals muscle mass mostly in our large muscles ~ upper arms, upper legs, chest & back.

[grekson]

#1072934

Exercise lightly only

[grekson]

#1072935

This happened by pure chance.There is nothing you could have done to prevent this no matter how healthy or unhealthy anybody ate or exersised.Now howver you just need good treatment.

[Author]

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