[WWWI2]

#1060451

I know that having Graves, I’ve lost weight that I will gain back, but I’ve heard, specifically that weight gain is common with RAI.

Is weight gain guaranteed? Is there anything, other than just the common sense things, (eat right, exercise etc) that anyone would suggest?

Any help or input is appreciated. Thanks!

WWWI

[Kimberly]

#1182693

Hello – I don’t think that *anything* is guaranteed with Graves’ disease! Regardless of treatment option, I know patients who have had no issues with weight, and others who *have* struggled with weight gain.

I saw a poster presentation at a conference a few years ago of the American Association of Endocrine Surgeons that looked at weight gain following thyroidectomy. The study looked at patients who had been treated with thyroidectomy at the University of Wisconsin. For Graves’ patients, the average weight gain after 2+ years was around 9 pounds, but the range among all the study participants went from *losing* 4 pounds to *gaining* approx. 22 pounds.

Hopefully, others will jump in with their personal experiences.

[SueAndHerZoo]

#1182694

Nope, not always weight gain. I had my TT on July 16, 2013, and I am 5 pounds less than when I went into surgery. I seem to fluctuate about 2-3 pounds, up and down, but that’s pretty normal for everyone whether they have thyroid issues or not.

I feel better, therefore I am more active and I tend to eat better. When I felt lousy, I was always looking for comfort food and junk food. I could lose more if I were trying but am happy with the weight right now.

Like she said – no guarantees with this disease! Some of it is out of our control, but some of it is totally in our power.
Sue

[WWWI2]

#1182695

Kimberly,

thank you for your response. That is very helpful information.

Sue,

I have been unable to log in for several days but have been reading posts and have read your journey. Right now I’ve come out of remission, I have tried to take meth and I am not doing well on it. Therefore there is a chance in the near future that I am going to have to make a decision. I’m pretty much set on TT if that’s at all possible. Still trying to find a new endo so not sure when or what’s going to happen.

I thought I read something about things going pretty well and then not so well for you. Do you recall that? I’m foggy tonight and can’t find what I’m referring to.

Thanks in advance!

WWWI2

[ChristinaDe]

#1182696

Another vote for TT not necessarily causing weight gain. My experience is similar to Sue’s, once I felt better it was easier to be active & eat well. Because I was so worried about the whole weight thing…I jumped into an exercise regimen the second my surgeon cleared me (which was when my heart rate had slowed to normal w/o any beta blockers – about 6 weeks).

I think in cases where weight gain occurs after RAI or TT (despite healthy eating alongside an active lifestyle & otherwise good health) it’s more likely to be because of being under medicated & hypo than due to the procedures themselves. During the month or so I was hypo after my TT, I gained 4 lbs w/o eating much. That came off just as quickly when I reached normal levels. Now I weigh exactly what I weighed when I had my TT (& that’s after regaining the muscle I lost while hyper & we all know how heavy muscle is – so that would mean some fat was lost along the way). Thus far (1 1/2 yrs), it’s easier to stay at a healthy weight when my thyroid levels are consistently in the right place.

[Talley]

#1182697

Just to give another perspective…I went into my TT at a good weight – 114 (I’m only 5′ tall). I have always been active – workout daily, eat well, etc.

I gained 15 pounds within the first 8 weeks post TT. I started working out on day 9 post-TT, earlier than recommended, but I was already concerned that I had gained 5 pounds. I was eating very healthy since I was concerned about weight gain.

My endo started me on 100 mcg Synthroid the day after my TT. Since they can’t test your levels for around 8 weeks, by the time they checked my levels I had gained 15 pounds. Unfortunately I didn’t see my endo until 6 months post-TT, I wish I had seen him earlier since he raised my Synthroid as soon as he saw my numbers. My Synthroid was raised to 112, but I still felt bad.

My endo has been great, I asked to change to Tirosint since I have gastro issues and he changed. I asked to add Cytomel to raise my T3 and he did. I believe you saw him in the past and didn’t like him, but I have to say he has been great through this post-TT process with me.

I am still struggling to lose the added weight – I am eating gluten-free now due to my intestinal problems, low/no sugar, low carb, etc. I am now seeing a holistic doctor in Boulder and have a follow-up with her next week – I am curious what she has found in my blood workup, I think my T3 and adrenals are causing the problems with my weight gain (or inability to lose).

Overall, my surgery was great – I loved my ENT and my scar is non-existent. I wish I had a better “plan” for post-TT tx and had started on a higher dosage – although based on my weight, the dose was “good”. My only complaint about the TT is the weight gain.

Be sure your endo will check your T3 and T4 levels after you have your thyroid removed – TSH is not adequate to base your medications on. I am very happy with the added T3 – my body doesn’t seem to like to convert the T4 to T3. I may end up requesting increase in T3 and lower T4 (Tirosint) depending on my next blood results.

Who knows why some people gain and some don’t. I started off at a great weight and now am overweight. I’m glad for the TT since they found cancer, but there are many days where I wish I hadn’t had the surgery…It took almost a year before I felt “normal”…and taking medication every day for the rest of my life is depressing.

[SueAndHerZoo]

#1182698

Hi WWW.
I haven’t read my journey in quite a while so, off the top of my head, I can’t recall if I ever mentioned doing well and then having things go bad again. At least not since I had the TT. BEFORE the TT yes, I had ups and downs, remissions and crashes, and fluctuations were very common. After the TT, even my worst days were still better than my best days before TT.

Perhaps what you read was that I seem to have symptoms each time we change my dose of Levothyroxine. Some people notice, some don’t, but I’m one of the unfortunate ones who experiences some discomfort for a few weeks after we change doses.

Good luck in whatever you decide.
Sue

[beach45]

#1182699

I had RAI May 2012; I gained about 30 lbs on antithyroid Methimazole in 2011 when they raised my dosage for approximately 3 months from what I was taking in 2010; I never lost that weight; I gained about 5 lbs after the RAI, the 5 came off; went down a little more and now of recent I’m up to where I was almost post RAI; total 35 lbs. Do not seem to convert well T4 to T3; having issues with different types of thyroid hormone and dosages; working some adrenal issues and gut issues, so I’m kind of in a limbo; yet I think when the patient is on the proper thyroid hormone and dosage for them, that with proper diet and exercise, the person will drop and maintain the weight; the thyroid hormone is not a weight loss drug; it is to stabilize our levels for us and hoping to get to the most optimal levels in range for us and then it makes it easier to take the weight off that might have been gained as a result of treatment. I believe possibly if I had not gone on the antithyroid drugs for 1.5 years prior to RAI, maybe I’d not have gained that much post RAI; What a couple of my doctors say I’m in a metabolic syndrome right now; I’m very conscious of my diet and exercise so I cannot say I’m gorging myself or eating bad food selections and I’ve had all kinds of blood work and not gluten sensitive yet I’m still careful. In speaking with different people who were treated for Graves disease it is not a one size fits all as I’m finding out; I know people in my town now who had RAI or TT and some are struggling still years later post treatment with excess weight. I know people who gained minimal post RAI or TT and got on the proper type and dosage of thyroid hormone and weight was not a concern. I personally wish I had not had the RAI yet not much choice as antithyroid was not getting me balanced as I was up/down and my endocrinologist(s) were very concerned about my heart. They wanted to prevent the potential for a thyroid storm as I was in pretty bad shape. I am not happy with the weight gain or low energy levels, yet I have hope with my good doctor(s) I’m going to get to balance at some point in time. I suggest to people work with a good doctor and become as balanced as you can be with thyroid hormone (testing FT3 and FT4 and not just TSH) and your own good health efforts, and it should be okay in time even if there is some weight gain, in my opinion. Best of luck!

[JEH]

#1182700

I am 71 and was diagnosed at 55. I am 5’9″ and weighed 148 at the time my weight loss occurred (10# in 3 months). After TT began in 1998 I immediately went up over 150 and am now near 170, even with normal activity and earting habits. I have not taken TT since 2006, but the weight gain happened even when I was on TT. When I complained the doc told me to eat a low carb diet. Since I am also bulimic, diets don’t work and set me up for binging and purging, so that suggestion was not helpful. One thing I am clear about is that I retain water since TT. I can’t even wear my wedding ring any more except occasionally when my fingers aren’t swollen. At my age my weight also shifts into my trunk from my extremities so my size 10 waist bands are too tight most of the time. I live in south FL in the winter and a mediterranean climate in the summer, so I am mostly in temps over 80F, which cause discomfort and water retention. But that was also the case when I was on TT. Going off TT hasn’t really changed much. People still refer to me as thin, even though I haven’t weighed this much since active bulimia in the 1970’s. I would just like to be back around 150 but I doubt that’s ever going to happen.

[snelsen]

#1182701

Hi JEH, really enjoyed your post! And we are in the same demographic decade! But soon, next year, I will be in the next one~

Just one question for you, and I think it is terminology with all those darned abbreviations~ TT means total thyroidectomy, the surgery to remove your thyroid. Are you referring to ADT?? Which is antithyroid drug? Like methimazole? Or do you mean levothyroxine, which is Synthroid, Tirosint, a few of the brand names for thyroid replacement?
Just checking!
Shirley
I have to give away a lot of clothes, cause of bigger abdomen and larger waist, too, but not heavy or overweight. Don’t like that!

[Kimberly]

#1182702

@Shirley – I started gaining weight around the middle shortly after being diagnosed with hyperthyroidism, but before I got the GD diagnosis. Was only a couple of pounds over my previous weight, but all of a sudden, pants wouldn’t fit anymore. Now it’s even worse…super frustrating! I’ve already given away a bunch of clothes and still have another couple of boxes that I’m not quite ready to part with!

I’ve informally heard the same complaint from other patients, so would be really interesting for researchers to take a look at this!

[JEH]

#1182703

Thank you so much Shirley. I thought TT meant thyroid treatment verses radiation or surgery. Opps. Although my endo did say if it were him he would do TT, he was great about helping me through ADT. In fact he recommended ADT due to the beginning of opthalmapthy in my right eye. He felt that radiation could cause thyroid storm which would make the eye situation worse. Really glad I followed his advice.

[snelsen]

#1182704

Hi JEH<
Soooo…when we have Graves’ all of us begin with an ATD, anti thyroid drug, to decrease our crazy irrational thyroid production. Then we can actually THINK!
And, if heart is really racing, and/or BP really high, meds for that accompany the ATD> That is what an ATD is for. But it is not the permanent treatment for Graves. Now that I realize you are on an ATD, it makes perfect sense that you might need more…or less.

Soooo, though, one of the treatments IS ATD, the other two are radiation (your endo is so right that this is not for you, there is enough literature out there now that says it exacerbates TED, or can) So for you, your choice are ATD or sugary. Until recently, ATD was not considered a treatment. In recent years, a few people, Kimberly is one of them, has “stayed” on ATD’s with good luck, and that was her choice. But if”we” continue to revert to hyper again and again, it is time for a TT (total thyroidectomy,) which is why you endo mentioned it.

All tired tonight. Signing off!
Love hearing from you
Shirley

[JEH]

#1182705

So I went off all my thyroid meds in 2006 at the recommendation of new endo. Heart rate and BP remained normal. No noticeable weight gain other than what had happened since GD diagnosis. Still suffer mainly from thickened waistline, heat sensitivity, mild constipation, moderate mental confusion, etc. but stopping the meds didn’t seem to make much of a difference with those symptoms. However, it has been 10 yrs since I’ve had comprehensive labs done. My endo watches me via yearly TSH. I will be in San Francisco next month and hope to get an appointment with my original endo there who did much more extensive lab workup when I was treating with him. I’ll post what happens with all that after I meet with him, if I’m able to get an appointment after all this time.

PS Do you guys all have to read your posts over to be sure they make sense? I do. Guess it’s part of the mental confusion (or else my fingers have a mind of their own).

[Kimberly]

#1182706

JEH wrote:

PS Do you guys all have to read your posts over to be sure they make sense? I do. Guess it’s part of the mental confusion (or else my fingers have a mind of their own).

I always re-read, whether it’s a post, e-mail, or some other communication. I suspect that if we did a poll, the response would be close to 100%.

[Author]

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