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  • mgelsimino
      Post count: 3

      I was recently diagnosed with graves disease, but have put on 40 pounds in quite a short period of time and am heavier than I have ever been in my life. I thought I was supposed to lose weight. Has this happened to anyone else? If I don’t treat it, will I eventually lose weight? I realize I am being superficial and vain for focusing on the weight rather than all of the other symptoms, but I don’t have much else to live for, so I think I’d rather take a chance with my life than accept being and feeling fat. If anyone has any experience with gaining weight with Graves, please let me know how you treated it. Thank you.

      Kimberly
      Online Facilitator
        Post count: 4290

        Hello and welcome – I totally understand having frustrations over weight…I used to lead meetings for Weight Watchers and had to quit because my own weight became such a struggle. However, your #1 priority right now is to get your thyroid hormone levels stabilized, which will get you back on the path to good health. A professional counselor might be of assistance in helping you sort through the shock of being diagnosed and the complications that you are currently dealing with.

        Unfortunately, weight issues and hyperthyroidism are not well understood. Some patients actually do gain while hyper. Others may struggle with weight gain during or after treatment. Still other patients have no issues at all with weight. For now, focusing on whole foods like fruits, veggies, whole grains, and lean proteins is a good idea, as is keeping a food journal to track intake.

        Graves’ is a condition that is likely to get worse over time if not treated. Is it possible you might lose weight by going without treatment? Possibly, but any weight loss is likely to be muscle mass, and that can have severe consequences. I’ve heard from patients who went untreated for long periods of time and lost so much muscle mass that they could not longer do simple tasks like walking up a couple of stairs or holding up a hairdryer.

        I would encourage you to please research the three available treatment options and get started with one of them. And if you need a place to vent, please stop by…we all understand what you are going through!

        Darcy43
          Post count: 125

          Yes I too gained while on Methimazole. It was strange. Without it I was very hyper, sweats, heart palps, and cranky as heck. when they put me on a high does at first 30mg a day, it regulated my symptoms but then I was told to cut it down wayyyyy low to 5mg. I was becoming borderline Hypo and those symptoms include weigh gain. I do not the Methi slows down the metabolism, but doesn’t take away the appetite you may have had when you were full blown hyper. Add the fact that muscle wasting occured and you may not have the energy to be quite as active = weight gain.

          Of course my endo swears the meds have nothing to do with weight gain…right.

          My advice, is once you get your labs stable (which is most important) then start slowly by walking or yoga. It keeps you tone and will help you maintain and at least not gain. And as aways watch what you eat even more so. It is hard (I have some pounds to shed and my spiteful mother even joked “I thought Graves Disease folks were skinny”…I’ve posted about her but I have since solved that problem.

          Self love and really taking care of yourself is the best advice I can offer. It gets better…slowly….but it does get better. One day at a time.

          Good luck.

          paleblue
            Post count: 18

            I met a woman who gained weight with Graves, and when she finally figured out she had Graves and got treatment, she actually lost weight and returned to her normal size. I was the opposite–got very thin w/ Graves, and then w/ treatment gained a little beyond what I am used to. Now that I’m off meds (thyroid levels and antibodies are all back to normal), I am back to my usual weight. Every story is different it seems. Good luck getting your health back.

            beach45
              Post count: 178

              For me this disease has not been easy in regards to weight; I lost 10 lbs suddenly in Spring 2010; I started eating a bit more since I realized my metabolism was speeded up (at the time I had no clue it was Graves) and I gained 10 lbs. Then in August 2010 after questioning my internist what was going on as I never had it so easy to lose weight, I was confirmed with Graves; I wish I had watched my diet when I had initially lost because from then on, going on Antithyroid drug Methimazole for 20 months I gained almost 20 lbs more.

              Like Darcy said the doctor(s) both my internist and endo said Methimazole had nothing to do with the weight gain; diet and exercise; NOT because I was exercising and eating like a bird and all the right foods; very little carbs if any. So part of that was being left drug induced hypothyroid on Methimazole too long and then even when I flipped flopped back to going toward hyperthyroid for a while with a reduction in medication, I never lost the weight gained.

              Plus I had issues prior to Graves where I gained weight as I showed hypothyroid from my blood test results and all of a sudden took a 360 turn and went hyperthyroid. I had all the antibody tests in August 2010 and it indeed showed Graves.

              For me though, the most important thing for my health was to get this disease under control and with Methimazole I could not 20 months later it was too much of a rollercoaster so I opted for RAI. Here I am 3+ months later, in range now, yet not hypothyroid yet and waiting anxiously so I can get on Synthroid because I hope once I finally maintain certain thyroid levels, that hopefully it will be easier to lose weight with diet and exercise; which I am already doing anyway.

              Do not get discouraged as this is a difficult disease at times. For me I just want to stabilize in weight so I do not have to go into yet a larger size as with not being able to afford it anymore and plus I know I must be changing toward hypothyroid again as I’m puffing up in the middle again like I was hypo in past. It is important too for our self esteem to want to be a normal weight yet also like for me, to help minimize pain in my back which already has some degenerative disc disease and the arthritis in my knees as more weight, more pain. Plus other health problems that could arise as I am in my early 50s so sometimes with age weight in itself can become an issue.

              I patiently wait though that once I get balance for me, that then I will have some weight loss success. Others have had the success too with time and effort yet I find this disease takes a lot of time and patience, at least for me! Some have it easier than others as we all have a different journey and I have heard of others gaining weight with Graves no treatment yet and then those who were on higher doses of Methimazole for a while like myself.

              I laugh my endo says, no more than a 10 lb weight gain post RAI; I cannot afford to gain any more! At least now that I’m in normal range in my last post RAI blood work I can exercise a lot again (my heart rate is down) and I am doing so. Before that, only slow walking. I go to therapy and acupuncture (which all my doctors are okay with) to help with my moods to deal with this and I believe there is a light at the end of this tunnel somewhere. There is some good sharing here on this forum on weight issues too from past postings which I have read that helped me. Good luck!…beach
              P.S. I do keep a food / exercise journal too so when a doctor says the old diet and exercise wording to me, I have my proof with me.

              demita
                Post count: 2

                Hi, yes I too have gained about 30 pounds and it does’nt seem to be slowing down.I’ve had Graves for almost a year now and am having new systems show up daily. Now I’m having issues with walking,bending etc. I’m miserable and don’t know what else to do!

                demita
                  Post count: 2

                  Thank you for posting.
                  I’m on treatment meds but the weight is worse than before.My tsh levels are through the roof at 9.6 and should be 4.0/dr.said this morning that now my thyroid has gone hypo and has decreased my meds.
                  I now have to take a folic acid supplement because mine was so low it barely registered on blood work.I don’t sleep but in 2 hour intervals and if I eat any less I’ll be on bread and water!
                  I just don’t know what else to do to get better…

                  mgelsimino
                    Post count: 3

                    that is horrible. i can’t imagine how you can get through the day on so little sleep and food. but i’m sure that’s what’s in store for me too. i don’t know how people are coping but it’s so depressing to think of suffering for the rest of your life. i’m grateful to everyone for replying, but i don’t understand how everyone carries on. good luck.

                    susanf
                      Post count: 12

                      My weight gain was one of the things that let me know something was going on. I was constantly hungry and nothing I ate made me feel satisfied. When I talked to my doctor about not losing when I was hyper he said that is what we all believe, but typically in this country we don’t lose weight and sometimes even gain. I started Weight Watchers and so far have lost 14 pounds. Last week on a low-iodine diet I lost 6 pounds! Not the way I wanted to lose it, but hopefully it won’t be back :-)

                      mgelsimino
                        Post count: 3
                        susanf wrote:
                        My weight gain was one of the things that let me know something was going on. I was constantly hungry and nothing I ate made me feel satisfied. When I talked to my doctor about not losing when I was hyper he said that is what we all believe, but typically in this country we don’t lose weight and sometimes even gain. I started Weight Watchers and so far have lost 14 pounds. Last week on a low-iodine diet I lost 6 pounds! Not the way I wanted to lose it, but hopefully it won’t be back :-)

                        The low iodine diet is for hyperthyroidism?

                        Harpy
                          Post count: 184

                          The weight issues associated with thyroid disease are not fully understood at this stage.
                          The usual response is in line with the changes in metabolic rate so Hyperthyroid individuals usually lose weight while Hypothyroid individuals usually gain weight and this is primarily related to FT3 & FT4 levels, but there are a number of other hormones including Leptin, Insulin & TSH itself also play a role in body mass management.
                          There are TSH receptors (TSHR) present in fat (adipose) tissue as well as other body tissues outside of the thyroid, my reading of this information is that stimulation of TSHR results in Lipolysis so theoretically higher levels of TSH should result in weight loss and lower levels to weight gain. This is the opposite to what is normally seen and may well be explained by excessive TSHR stimulation by the TSHRab’s (antibodies) in the adipose tissue of Graves patients, hence causing weight loss even while TSH levels are extremely low.
                          Many GD patients experience Hypo symptoms and can cycle quite a few times before the go into full blown GD.
                          So the issue is not that simple, weight gain/loss is just a symptom of the autoimmune disease that does need to be treated, so please do not defer treatment in the hope of losing weight.
                          The review of studies below goes into TSHR functions in the body not just weight gain, this information reinforces the fact that TSH plays many roles in the body, not just management of Thyroid hormone levels.
                          http://joe.endocrinology-journals.org/content/204/1/13.full

                          susanf
                            Post count: 12
                            mgelsimino wrote:
                            The low iodine diet is for hyperthyroidism?

                            Oh no, sorry to confuse you. I had RAI yesterday and I had to be on that prior to that treatment:)

                            Kimberly
                            Online Facilitator
                              Post count: 4290

                              Hello – Just a quick note that not all docs require a Low Iodine Diet (LID) prior to RAI. Those who do believe that depriving the thyroid gland of iodine for a period prior to treatment will cause the thyroid gland to take up more of the radioactive iodine.

                              The LID is commonly recommended for patients who are receiving higher doses of RAI for thyroid cancer.

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