[ncpatches]

#1059019

OK, here’s the deal, I know 4 people personally, that were hyper/have Graves and had the radioactive thing done to kill the thyroid (brain fog! can’t think of what its called. Grrr) Now, after years of medication, have gained severe amounts of weight, I mean 100-200 lbs! Is this what we have to look forward to? If it was a 20 lb gain, it would be different. Have any of you been thru this and not gained severely? The only thing Graves did FOR me was to drop 50 lbs I didn’t need. My blood sugar is now perfect, my blood pressure is perfect, I am on beta blockers just for the graves symptoms. I am no longer diabetic. The idea that I will end up right back where I started breaks my heart, there has to be another way. Its not appearance, although it is nice to wear normal size clothes again, I just don’t want to have to trade one disease for another. Does anyone understand what I mean?

[snelsen]

#1171594

Hi Patches,
I completely understand how you feel. Accomplishing the BP, blood sugar goals has resulted from your weight loss. Congratulations And what you have accomplished, is a great big deal, and certainly an investment in your health and well being.
And emotional health as well. I’ll let others who have had RAI respond to this, but as I recall, weight has been an ongoing issue. Not 100, 200 lbs. but definitely an issue. They can talk about it, the facilitors probably can give you some nice references to read.

Have you considered surgery? That is what I had. I went from hyper, to surgery, to beginning Synthroid, and my weight did not vary more that 5 pounds over 50 years.

Of course, the other part of this weight/overweight subject is comprised of large portions, Junk food, soft drinks, other bad habits, and inactivity. In my own case, none of these have ever been a problem for me. I have never been a night time eater, which is the big issue for many of my friends who battle weight. I eat pretty well, and for me it is easy to do. For other folks, this is a much harder trip.

[Bobbi]

#1171595

There is no rational reason why RAI should provide more weight gain than surgical removal of the thyroid OR taking antithyroid meds to control thyroid levels.

We live in a country where obesity is sometimes now referred to as an epidemic. So, we have to view reports about weight gain in Graves patients (which are a miniscule member of that larger population) in light of the percentage of our population that is reported to be 1) overweight or 2) obese. According to government sources touted in the news in the past year, that percentage of overweight is two-thirds of the population, with one-third of them being obese. Until Graves patients exceed that percentage, the causal link cannot be established. So far, even self-reporting does not reach that range.

After my RAI, when I was serious about eliminating extra calories, my weight stayed fairly constant — until I stopped eliminating empty calories. Some of the weight we lose is muscle loss, which is horrible weight to lose. Muscle burns more calories, even at rest than other body tissues. So when we lose muscle, our metabolism is lowered. AFter we get treated for hyperthyroidism, some (if not all) of that muscle returns and it looks like weight gain. But it is GOOD weight to gain. One of my obese friends (not due to thyroid) started working out regularly on the advise — no demands– of her doctor. The doctor also commanded her to stay off the scales for the first six weeks. Why? Because the exercise was going to increase her muscle and she would not see weight loss and could get discouraged. Recently, I eliminated empty calories again, and I’ve seen nine months of gradual weight loss. It isn’t magic. It takes work and consistency.

[ncpatches]

#1171596

Thank you, I was beginning to think severe weight gain was the norm, when you have no thyroid and on meds. As it stands, I eat very little, I have no appetite and rarely eat anything hot, just can’t stomach it, makes me ill. I had blamed that on my pain patch for nerve damage, but maybe the graves has something to do with it too. See, I have a combination of things going on and don’t really know what issue is causing which symptoms. All of you have been so patient with a newbee, thank you sincerely.

[gatorgirly]

#1171597

I gained 20lbs after RAI but it was more likely the very heavy round of prednisone for TED. RAI had the same effect that ATDs did, so there’s very little reason to suspect RAI had much of a role, if any, in my weight gain.

I also was on very strict exercise restrictions prior to and for a short while after RAI because of my heart rate. Being “lazy” for the first time in my life obviously caught up to me. I felt hopeless for a little while and wasn’t eating well because I thought, “What’s the point?” Now I know better and I’m eating healthy, doing yoga and exercising regularly, and the weight is slowly coming off. Sure, Graves and its effects slowed my metabolism down, but I don’t blame the treatment.

There are plenty of suggestions on here for weight gain and avoiding it. My endocrinologist gave me recommendations for carb intake (no more than 30g per meal) and told me to avoid alcohol. There are plenty of reasons but when carefully watching your weight, you have to decide which calories are more worth the satisfaction – sweets or alcohol. For me, sweets win every time.

[Kimberly]

#1171598

Hello – I find that many patients do struggle with weight issues, regardless of the treatment option that they choose. I have been on methimazole for 4.5 years and have struggled with about 20 extra pounds, despite leading an active lifestyle and carefully tracking my food intake. In fact, I used to lead meetings for Weight Watchers prior to diagnosis, and had to quit last year, because I had such a hard time maintaining my goal weight…which I had previously maintained for 3 years with no problems.

I know that my situation isn’t all that unusual, as we did a poll on our Facebook page about weight issues. At last count, 60% of respondents (out of about 70) said that losing weight after treatment was “extremely difficult”. About 15% said that losing weight was “challenging, but manageable”, and another 15% said that they had noticed no impact after treatment. (The remainder had either regained the weight they lost or said they had difficulty GAINING weight after treatment).

Interestingly, I just got back from working a conference for endocrine surgeons. One of the preliminary studies that was discussed out of University of Wisconsin (I don’t believe it’s been published yet; I’ll post a link if I can find the summary online) looked into weight gain after thyroidectomy. The researchers wanted to see if patients in general tended to gain weight after thyroidectomy. They sliced and diced the data in different ways, including various groupings: (1) type of disease: Hashimoto’s thyroditis, thyroid cancer, and Graves’ and (2) thyroid status prior to surgery – hyperthyroid, hypothyroid, and euthyroid. It was primarily the Graves’ group that gained a noticeable amount of weight — even moreso than the overall hyperthyroid group.

One presenter at our 2011 Boston conference looked at children who were treated for Graves’…many of them *did* have issues with weight gain.

(Note on links: if you click directly on the following links, you will need to use your browser’s “back” button to return to the boards after viewing. As an alternative, you can right-click the link and open it in a new tab or new window).

http://www.endocrinetoday.com/view.aspx?rid=87077

Also, an attendee at our Boston conference, shared this study from 2008, which was part of the Framingham study, a large study that was initially organized to identify risk factors in cardiovascular disease. These researchers found that participants tended to gain weight as their TSH increased – even if TSH remained within “normal” levels.

http://www.ncbi.nlm.nih.gov/pubmed/18362250

That’s not to say that everyone who is treated for Graves’ will gain excessive weight. Some Graves’ patients in the thyroidectomy study did lose weight after surgery. But personally, I think the limited research shows that there is more at play than just simple “calories in vs. calories out” when it comes to Graves’ and weight issues.

Bottom line, it’s important to continue fighting the good fight and make healthy choices, rather than just giving up, which is *certain* to make our weight increase even more. But personally, I take some comfort in the fact that there very may well be a physical reason for what I’ve experienced — rather than some sort of personal failing on my part.

[ncpatches]

#1171599

You guys are the best! thank you so much for the input.
Bless you.

[mvk]

#1171600

Hi Bobbie,

I am curious about the muscle mass returning after treatment. I am 12 days post RAI and am feeling better overall. I still have heart palpitations and am very dependent on my betablocker and still have hand tremors but I am better! My muscle weakness doesn’t seem improved at all. I have been walking a limited amount the past couple of days. Does some of the muscle strength come back on its own or are you saying with lots of exercise we’ll get muscle back? I nanny my granddaughters and lifting the 2 year old is really hard for me right now. My leg strength and arm strength are just gone. I was training for a half marathon when I was diagnosed and was really getting strong and now I just feel so weak. Thanks for your help. I know I’m asking for too much, too soon but would appreciate any info you have.

mvk

[ncpatches]

#1171601

Good questions MVK, would be interested in opinions on that too.
I can’t believe how weak I have become in the last 6 months. I truly think that the muscle weakness is why I tore my shoulder up doing something I have done every day for years. I know, by the end of my shift, my legs shake, my thigh muscles and arms are just noodles anymore.:o I’ve always been physically strong and worked demanding jobs. 8 years ago I was hanging and finishing drywall! Now I can barely make it thru an 8 hr shift on my feet. I hope, when my numbers are better, I can start building up a little strength. I haven’t had RAI but have just started meds, so I guess I have a long way to go yet. I so hope you are feeling stronger soon!

[Bobbi]

#1171602

Well, the muscle didn’t get weak overnight (although some times it feels that way) and it won’t come back and get strong again quickly either. Also, according to one of the endos that spoke at a Graves conference long ago, the muscle that comes back is “mushy” muscle at first, not strong muscle. So, we have to exercise to strengthen it. We also don’t know if all the muscle loss is returned. I felt that I had to wrap myself up in patience during the recovery period. Nothing happens as quickly as we would like.

[Anaisfan]

#1171603

Hi, new here…had RAI June 4, I feel ok and not hyper at this point, but do feel tired most times, which feels weird since was always super hyper! This morning got very freaked out to see scale says I am over 5 lbs heavier within the last three days, but i keep fitting ok on my regular clothes and don’t feel heavier, have my first endo appointment after RAI 6/19…. I have been following weight watchers point count and eating healthier than ever, very thirsty since treatment so drink a ton of water, I am swimming daily and I am feeling so depressed about weight. Read posts here and i am feeling glad to have found you….

[Bobbi]

#1171604

Do not freak out about the number on the scale. If the clothes are still fitting fine, it means your weight gain is likely to be muscle, not flab. Muscle weighs more than other body tissues, but it burns more calories — even at rest — than the others do, so having muscle weight is good weight.

[beach45]

#1171605

Hello, I had RAI May 3, 2012, and did not put any weight on just yet. I am still hyperthyroid now 7+ weeks out post RAI. I gained about 20 pounds on antithyroid, Methimazole prior and never was able to take it off. I was told by my endocrinologist because I am still hyper, do not exercise except for slow walking.

I ask a lot of questions of my endocrinologist which weight gain was one of them prior to RAI; he told me that most people may gain up to 10 pounds post RAI once they go hypothyroid and that once the patient goes on the proper amount of Synthroid, that weight should even out. I was also told that I cannot eat the same as I did when I was hyperthyroid where I did not gain easily. That was me though as everyone is different. I had to adjust my diet. I went too hypothyroid at one time on Methimazole not being monitored more carefully. It is good to be monitored closely post RAI as I get blood tests every 3-4 weeks now and my endocrinologist said I should not have many problems post RAI if we catch me going hypothyroid in enough time. Plus he warned this is a slow process to get my body balanced so not to expect miracles and for some it can take up to a year to get balanced once the patient goes on thyroid hormone. I asked about TSH and where he keeps the patient and he said for me, over 50, that he plans to keep it around 2-3 which is actually where I know in past where I feel the best yet again everyone is different. Some doctors/endocrinologists keep TSH closer to 1. And some go by the older guidelines although the ones I know do not.

I just know for me it was a big effort to keep my weight down when I went hypothyroid on Methimazole and I am prepared now for when I do go hypothyroid post RAI yet levels make a difference too.

Wishing you the best of luck with this….beach

[Author]

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