[kristenb]

#1018442

I have been browsing other sites, ie mythyroid.com… and they all sound awful. People talk about gaining 50-150 lbs post rai.

Has anyone here not gained weight after rai? I am on PTU and have been since January, but my levels seems to be just a tiny bit too high. I was in range 2 months ago, but I was at the higher end and my dr wanted me to be at the lower, and then I went UP! I am only on it twice a day, and I hear you should be on PTU 3 times a day.

I want to try for a baby next summer, and I feel like if I do the 1 year ATD then DON"T go into remession, I will have to do RAI anyways which will put off the babymaking for another yearish.

So part of me just wants to do the RAI now and get it over with since my levels seem to not be cooperating.

So did anyone NOT gain a significant amount of weight after RAI? Tell me about it.

I haven’t even done my uptake scan yet:( Got my blood drawn today but I feel like I am thinner than I was 2 months ago so I feel like my levels wont be down:(

[Ski]

#1064863

Believe me, I’ve been hanging around this BB for more than ten years, and I have never heard numbers in that range following RAI. A lot of people experience some gain, and the reasons for that are complicated, but most can return to normal activity (with some REAL willpower to continue), and get their weight back into or near their comfort zone. I think we also need to remember that because it takes so long to get completely well, we have also aged by the time we feel our best, and that comes with some weight issues all by itself.

Those who pay close attention to taking care of themselves typically have success with their weight issues, though no one escapes SOME weight gain because you lose muscle mass when hyperthyroid, and when it returns it adds weight. It is very necessary. The issue after that is the condition of that muscle tissue ~ it’s new, weak, and needs to be gently and carefully strengthened before it will act like the muscle tissue you initially lost.

[kristenb]

#1064864

I am only 23, and have gained all plus 5 of what I lost (gain 18 back since January)
I don’t understand how gaining 100 lbs in 6 months is even possible. ughh..

[kristenb]

#1064865

Oh ski I heard you *have* heard! Not "never"… well that is good!

What weight gain do you usually hear about?

[Bobbi]

#1064866

I have to chime in here. I was absolutely convinced by the awful postings on the web about weight gain after RAI that I was going to have a huge weight gain, that I came up with a plan to convince my endo that RAI was the evil culprit. Everyone said that their docs didn’t listen. So, when I had RAI I started keeping a log of every bite that went into my mouth. I gave up "empty" calories for the most part, but made sure I ate regularly, including snacks (but healthy ones like fruit or cheese, nuts, etc.) and watched portions. And, as I said, I wrote everything down. I did that to prove to my endo that I wasn’t overeating. I lost roughly 22-25 pounds after RAI. I cannot remember precisely, because it was quite a while ago, but I do remember my lowest weight. I eventually gained 15 of those pounds back, when muscle returned. I know that it was muscle, because my smaller clothes continued to fit even with the weight gain.

Weight issues are complicated, true. You WILL regain any weight that you lost due to lost muscle. But that is good. Having muscle makes you strong, and it raises your metabolism. But uncontrollable weight gain after RAI is not a given.

I recently read an article in a magazine that cited a study that had been published in one of the medical journals. They found that people on a diet who kept a log of food eaten, like I did after RAI, lost twice as much weight as people who did not. It keeps you honest. I almost never remember the doughnut in the a.m. when I am looking at a lovely piece of berry pie in the evening. But if I’ve written it down, I cannot forget, even if the log isn’t with me while I’m looking at the berry pie. Something about the act of writing things down helps to keep them in memory, perhaps.

So do not be put off by the postings out here on the web. Eat wisely. Watch that you are getting good, nutritious food. Cut out the empty calories. And eventually, your weight issues will normalize again.

[kristenb]

#1064867

Thanks bobbi-
I am pretty much the same weight I have always been, and and pretty much stable with my levels. I am prob going to RAI, and that is where my fear comes in.

I read one post on this board of a woman gaining 96 lbs after rai.

What have you seen as the average experience?
I just think about how when people say "hypothyroidism" people think the person is over weight. But my theory to this one is people are over weight for a while and THEN find out they are hypo…. not hyper than hypo. hopefully.

If I lost 25 lbs right now I would probably be in the hospital The only reason I went to drs and found I have graves(hasnt even been diagnosed officially yet!) was because I was 14 lbs under and thought I was dying of cancer!

[Kimberly]

#1064868

kristenb – My experience is that many patients do gain weight after treatment for Graves’, regardless of the treatment choice. For those who *lost* weight when hypER, this is actually a good thing. But for those who did not, the EXTRA weight is very frustrating!

I am being treated with ATDs and have really struggled with keeping my weight down since I was diagnosed. I have been a Weight Watchers member since long before my dx, so I have a constant record of my food intake over the last several years, and I do believe that something in my metabolism is different now. In fact, I recently switched from counting POINTS to counting calories to see if this helps get me closer to my goal weight. Counting calories a huge pain in the you-know-what…but I figured it was worth a try!

The bottom line, though, is that we need to select a treatment option in order to control our hypERthyroidism. Otherwise, this can cause bone/muscle wasting, heart issues, and possibly thyroid storm (which is a very serious and potentially fatal condition). Once you get your hypERthyroidism under control, then you can focus on the weight issues…*IF* that does end up being a problem for you. And, of course, we are always here if you need to vent!

[Bobbi]

#1064869

I do understand, kristenb, about not wanting that much weight loss. By the time I figured out that I really wasn’t going to gain uncontrollable weight after RAI, and had lost all that weight, my docs AND my husband were telling me I was too thin. I was not "dieting" in the sense that I was doing anything radical. I just eliminated sweets and other things which have lots of calories but few nutritional plusses. As I said, I ate three meals a day, with a healthy snack in between meals. Also, understand that when we do RAI we do not instantly have normal levels of thyroid hormone. It can take, and usually does take, WEEKS for the body to go back to normal levels of hormone before going hypothyroid. So, I started watching what I was eating during weeks when I was still hyper. It is one of the aspects of the disease, and its treatment that makes weight issues more complicated.

The issue with weight gain is also complicated by the (typical) loss of muscle, including major muscles while we are hyperthyroid. Two facts to keep in mind. Muscle weighs more than other tissues in the body. And, second, muscle burns more calories, even at rest, than other tissues. Losing muscle appears as weight loss, but when we lose muscle our metabolism is lowered. We are not burning as many calories, so we cannot eat as much without gaining weight. When we regain normal, controlled levels of thyroid hormone the muscle starts to come back. This appears as weight gain, but when it returns our metabolism is going back towards its normal point. The returning muscle isn’t strong, necessarily, and needs to be conditioned (by exercising wisely) back into strong muscle. We typically do not "feel" like exercising, or, conversely, we try to do too much, too soon, and hurt ourselves. It is necessary to exercise the returning muscle, but only in baby steps at first.

[jlw]

#1064870

I did lose a lot of weight when I was seriously hyper. I actually didn’t think anything of it. I was excited to have lost baby weight until I knew it was not from doing anything, but from this disease.
I am not on methimazole now, but was for a year and a half. I gained the weight back and then some. I am about ten pounds heavier than I should be. I keep reading the posts about muscle and I think that is my problem. I don’t have much and my body is trying to gain that back. At least I can hope for that as it gives me a positive thing to look toward.
I, too, am thinking about the next step in my thyroid experiment – to RAI or not to RAI? Good or bad, the weight gain is something that is on my mind because I am already over what I should be.
I am currently creeping back down to hyper with no meds since March. I have been gaining weight though. I am very careful about what I eat, so who knows.
When I don’t feel defeated, I try to be happy with my new curvy mid life self.

[jlnay]

#1064871

Hang in there ” title=”Wink” /> I had RDI about 18 months ago and I only gained 10lbs. Once my thyroid levels were adjusted I started losing weight and I have energy again ” title=”Very Happy” /> Good Luck

[maryintx]

#1064872

I have surfed around a lot online and this is the most accurate forum for grave’s info IMHO
I would go get that RAI done asap and then get myself in top shape for babymaking ” title=”Smile” /> by starting off with swimming and walking. When you get ready to do the uptake you will probably go low iodine diet for a week maybe a couple days. Take advantage of that time away from chips & dairy — and clean all the processed food stuff out of your cupboard, youre going to want to eat healthy for your baby and this is the perfect time to make better menu choices and get your s/o on board. My husband lost 7 pounds of belly when I did my uptake low iodine thing and RAI from me having no junkfood in the house.
Instead of what weight I wanted to end up being, I focused on what sz clothing I looked best at and my facial features I wanted to improve- dark circles, thin sallow color skin had to go, and the weird body hairs.
The extra 5 pounds I put on after RAI were mostly water weight as my periods changed up and as I felt better and could go off restricted activity, that turned right into muscle and honestly I look better then before graves now. My breasts stayed larger to a C cup and I was flat as pancake on ATDS & then I got some lil booty in the back. I feel sexy & vibrant now at my stage of life (late 40s).

I will probably come back to edit out the personal stuff but dont let posts online scare you off a course of treatment or talk you into doing something. Look at the facts you get from your endo, get a second opinion from OB GYN who has thyroid experience, then come here and ask the facilitators for their 2 cents.

[runlacie]

#1064873

My weight prior to Graves’ was 138. I had symptoms beginning in late April 2009, dx’d in June 2009, RAI July 20, 2009. In those 3 hyper months I lost 8 pounds and was down to 130. Between August and November, I gained about 15 pounds and was up to 145 (7 pounds over my pre-Graves’ weight). It was right around the time I started taking replacement and my levels were closer to normal that I was able to lose again and by Feb. 2010 I was back down to 138.

Exercise (once you are no longer hyper) and be really careful about what you eat and there’s no reason to gain crazy amounts. The biggest problem for me was while I was hyper, I ate huge amounts of food and lost weight… then transitioning to hypo and having to diligently watch my intake plus exercise like a crazy woman and still gain weight was tough. Once my levels were kind of normal (they are still not completely regulated a year post RAI), it got a lot easier.

Good luck with your decision and your baby-making!

[Corinne]

#1064874

Hi,
I am in a similar situation as you. I am 25, and was dx in December. In all reality I know I have been sick for a really long time, in fact in high school I started getting some palpitations, "over"-perspiring (which I remember being sooooo embarrassed about) and weight loss. Through college I couldn’t gain any weight….and was totally happy about that of course. But after college, when I started graduate school (3 years ago now) I started gaining weight and experiencing fatigue…and I think this is where I started getting really ill, probably brought on by huge amounts of stress. I really think I lost so much muscle from graves and my metabolism slowed as a result and then suddenly I was so sick I called into work 2-3 days out of the week and could barely get out of bed. Finally I went to the doctor and was dx. I waited about 5 months to have RAI….and I wish I wouldn’t have. The ATD’s never made me feel 100% better. I also want to start trying to have kids in around a year, and at this point I know its going to take me a while to get to normal levels, and then after that probably at LEAST as long to heal, because I feel like my poor body is just freaking out. But anyways, about the weight. As I said I ended up gaining a lot of weight (well like 20lbs) compared to my "usual" weight (or at least what I feel like is ideal for me) while I was still hyper and really very ill. But since my RAI I am starting to feel a lot better, but am still VERY hypo. For about 1.5 months my TSH has been in the high 30s. Which, some people would think should be causing me to gain a lot of weight. Since RAI it has been about 3 lbs. I just increased my dosage after my last appt (I start my new dosage tomorrow finally). I won’t lie, even though I haven’t gained much according to the scale, I feel like I have and its a tad uncomfortable. But, most people say I don’t look like I have gained weight (trying to be nice?!?). But, all I am trying to tell you is (even though I probably got way off topic) don’t let the weight gain worry you. Even if there is significant weight gain….its not healthy to be in this condition! If the PTU isn’t getting you in a healthier position….the RAI IS worth it. I haven’t experienced what I would consider horrible weight gain, I still look thin. And even with the small gain I feel SOOOO much better already. Soon I will be able to start working out again and hopefully look and feel great in the near future. Then after that I can start having kids. It really doesn’t seem like it now, with how "fat" and "cruddy" I feel now that I will ever be able to feel active and fit and healthy again….but I have seen glimpses….and am sure I and we will get there!
-Corinne

[kristenb]

#1064875

Thanks everyone.
Corrine when did you have RAI?

I feel out of the ordinary, because I never felt super sick, and really wouldn’t know I had anything with me if it werent for weight loss around christmas.

I am not sure if my levels are stable or not now. Last blood work showed they were close, and I had work done last fri…
I just assume they are getting worse not better because I weighed 5lbs more 3 months ago when I was more hyper and exercising everyday..

RAI is looking like a possible option for me…

[snelsen]

#1064876

My experience with hyPER was that I could comfortably eat 4-5000 calories/day, was compulsively hungry, and still lost weight. I kind of LIKED that part of being hyper. I know this had been addressed before in the recent past, but being aware of this, and keeping a record of what is eaten after you are through with hyPER, can be pretty humbling. During hyper, I got used to being the person who could eat like a hog and not gain weight. People remarked on it favorably. So the reinforcement was positive.
Because our bodies are so stressed, our heart rate so fast, our muscles were wasting, the physiological tendency is to eat more to maintain this whacked up machine-body when we are hyper.

It is quite a surprised to rejoin the world of moderate eating. Keeping a log is a good idea. Being aware that women, especially, may tend to view themselves at a weight that is unrealistically thin, as their goal. Lots of dynamic with all of this weight gain/loss stuff without thyroid disease thrown in! I think the biggest thing that shocked me was that I thought I eating my 15 flavored jelly beans and one square of chocolate a day (I love these two items.) But when I gutted up and recorded what I REALLY did, it was a finite, objective fact for me to see. For me, I can eat anything I want if I watch my portions. Our whole culture seems to be geared to "more is better." This is represented by most meals when you eat out. There is almost always enough for two meals in one order.
so,these thoughts work for me.

[Author]

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