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Do you gain more weight with RAI therapy or the surgery? Or is the weight gain the same for both because you go hypo?
Thanks
Weight gain seems to be an individualized thing as I read the archives here on this forum. I got a lot of good information searching past posts here.
Plus I know people who gained minimal post RAI and TT and lost it once made eurothyroid on Synthroid post RAI or TT in time; that is, with decent diet and exercise too. I also know people who still struggle with weight both post RAI and TT as levels matter, how we take care of ourselves matter and working with a good doctor matters.
For myself I had RAI 5 months ago; I’m currently on Synthroid 125 mcg for 10 days; total 40 days as I started on 75 mcg and then 100 mcg yet 10 days ago endocirnologist saw the need to increase me to 125 mcg. I struggle with weight gain; I gained a ton on Methimazole, antithyroid first being on it 20 months and being drug induced hypothyroid two times; then I gained another additional 10 lbs after RAI; my endocrinologist told me this is average weight gain; yet doesn’t hold for everyone; yes hypothyroid will slow our metabolism yet I know of those who after time do maintain their weight and I know a woman living by me who had RAI in her 30s seven years ago and told me the weight she gained post RAI came off within a year once they got her Synthroid dosage right. I am also going into menopause which does not necessarily help my situation and all my weight is in the middle and I expect a lot of it is water retention; and my sugar is slightly high as I had testing done. Yet I believe in time and effort and working with a good doctor is what will help me get back to a somewhat normal weight.
I had to not worry so much about weight as that was a fear of mine prior to RAI and I chose not to do TT; I could have had a heart attack with the Graves and antithyroid was not getting me under control so now I will work best over time to get back to where I need; my objective was to get healthy and this is definitely a process; only thing with TT what I hear is that you will get on the right amount of Synthroid sooner than with RAI which is definitely an interesting journey for me yet not all as my husband has a cousin, a doctor who had RAI 20 years ago, went hypothyroid in a year, never gained a significant amount of weight and did not have similar to what I am going through and at 60 now looks great no other problems. We are all so different yet I had to focus on first getting Graves under control; now I’m working the weight issue.
Good luck with whatever you choose as there are many here on this forum who have very good information, expereince and comments….beach
Hello – As Beach45 said, this is a very personal issue. I’ve known patients who have had no issues with weight following treatment with Anti-Thyroid Drugs, RAI, or Surgery…and patients who did struggle with weight, regardless of treatment option.
If you use the “Search Posts” feature in the top right-hand corner of the screen and search for the keyword “weight”, you can read experiences from other patients.
ALL three treatment options have risks and benefits…but there doesn’t seem to be any research indicating that one treatment option is better or worse than the others in terms of weight issues.
Take care!
Thanks Beach 45 that was very helpful. I know worrying about weight gain should not be my main focus. My focus should be on getting better and not my weight. I have always been a thin person, so when I lost my weight with hyperthyroidism, I lost 22 pounds and weighed as low as 101 lbs. I am now 105 lbs, but that has remained the same for many months. So if I gain that weight back, I will be okay. I just don’t want to gain weight and not be able to control it.
I’m having my RAI Wednesday at 1:30. Did you feel okay after your RAI?
Mariaboo,
Your welcome.
My friend here who had RAI did gain back the weight lost with Graves hyperactivity yet anything which she gained after RAI, she lost in time like I mentioned. We know with the hyperthyroid situation we do lose weight without trying as I lost 10 lbs; then I gained about 15 with Methimazole and about 10 more post RAI. I just lost 5 lbs and I do not count the 10 I lost with Graves hyperactivity because that was not my realistic normal weight for the recent years. I hope to lose 20 lbs to get back to my normal weight yet it seems like the RAI also may have thrown me into menopause (I am in my early 50s) and I am sure my hormones are all over the place. I met people who had RAI and were a normal weight and looked good; we do need patience and give ourselves time to normalize also post RAI.
I actually felt pretty good post RAI; a little hyperactivity the first 3 weeks yet nothing like when my Graves was in full swing! It was close to my 4th month post RAI that I went very hypothyroid and I recognized the symptoms. I’m still battling with that like I mentioned with the weight and bad muscle and joint pain which I am hoping with being on my T4 for a while that I will feel better in time. As time goes on, I see overall that things are turning out well yet also taking time. Worst part immediately post RAI was for me to isolate 2-3 days. Please keep us posted and best of luck this Wednesday!
Thanks again.
What is T4? I’m going to be on Synthroid. And how did you know you went hypothyroid? What are the symptoms?
Before you RAI where you feeling at your worst? Because I am not at my worst, I’m actually having some good days (not great) but I don’t feel at my worst?
Sorry for so many questions, but it’s countdown time for me . .27.5 hours until RAI time, and I’m just trying to get as many questions in as I can.
At the hospital, does Nuclear tell you what you have to do when you are quarantined? And I know what you are talking about – I’m not looking forward to isolation.
Maria.
Mariaboo,
T4 is a thyroid hormone which is Levothyroxine which Synthroid is one of them.
I was feeling terrible with Graves symptoms and undiagnosed for 4 months in 2010; then up and down not feeling well on antithyroid drug Methimazole which doctors could not get the dosing right for me; I never really felt good over those 24 months yet pockets of okay; and I’m just feeling okay now as I’m waiting on more blood testing in about 2 weeks to see where my levels are now being on Synthroid/Levothyroxine (T4) for about 40 days. That is only my story though and I feel I wasted time on antithyroid Methimazole as I never looked like I was going to achieve remission; I know people who got diagnosed, had the RAI and did just fine. Every story is different and I’ve been researching medical articles and talking with doctors all about thyroid over 2 years now.
I was already drug induced hypothyroid on Methimazole twice so I knew what to look for. Did you happen to ask your doctor? There may be information here too in the archives or in the General information portion. I felt sluggish, gained weight, bloated, fogged, confused, achy, dry skin, and clumsy. I got hit hard as I had a discussion with my doctor to test me earlier as I knew it was coming and he waited so I did not have a good time going hypothyroid July/Aug 2012. Yet there are people I know who had an easier time so you may have an okay time of it and keep in touch with your doctor as I did; he blood tested me every month post RAI instead of waiting even longer as some endocrinologists do; some do more frequently like mine. I ask my doctor(s) a lot of questions.
The nuclear doctor/techs should give you a sheet of instructions; I had a RAI Uptake the two days prior to receiving my I-131 and it was all pretty straightforward. Many people do just fine with the whole ordeal through getting onto their Synthroid.
We are all so different reading here in archives and other places and talking with people in person who had RAI and I find it depends on the severity of the Graves prior, age, other health circumstances, how many Millicuries of the I-131 the patient receives and other factors which all make a difference in how the patient does later on. I believe for myself once the doctor(s) get my thyroid hormone right, that I will start to feel much more like myself yet it is a process and for some it has been easier than for others from what I have found out.
Best of luck and please keep us posted!…beach
Hello – I have not been treated with RAI, but a couple of general comments…
1. Synthroid is a brand-name replacement hormone that contains T4. There are other brand-name T4 drugs, as well as generic options, that are available. (Doctors generally prefer a brand name such as Synthroid, Levoxyl, Unithroid, etc., unless cost is a significant issue).
2. The nuclear medicine team should provide you with some guidance, but it’s a good idea to be prepared ahead of time. I’ve heard from patients who didn’t find out until after the fact about the need for disposable dishes, keeping distance from others, etc.. It’s a little late at that point to do any proper planning. Here is some *general* guidance from the ATA (be sure and use the table for hyperthyroidism, as opposed to the table for thyroid cancer), but if there is a conflict, follow your own nuclear medicine team’s guidance.
(Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).
http://thyroidguidelines.net/sites/thyroidguidelines.net/files/file/thy.2010.0403.pdf
Take care!
Thank you Kim. This is all great information.
I have started to prepare my room and this will definitely help me. 23.5 hours to go. Yikes!
Hi Mariaboo,,
I had RAI 5 months ago. Since then I now have gone hypothyroid and am in the stage of trying to regulate my dosage of Levothyroxine. I went to the doctor this morning and my TSH went from 72 to 38 this past month (she wants me below 2) and my Free T4 is within normal limits at 1.2. We had a discussion about the “process” of getting within normal limits and feeling better. It seems really long to me right now but I am trying my best to be positive about it. This forum is a blessing to help me with this attitude. I am gaining small amounts of weight along the way since losing 35 pounds while I was hyper. I think in total over 5 months it is just over 5 pounds. Ugh! I am being extremely diligent about my diet and exercise. I don’t think I can do any better quite frankly. Beach45 is almost on the exact same timeline as me and it is great to share information with her but keep in mind, we are all a different story to be told. I always will wonder if I chose the right course of treatment but I did not want surgery. I also should tell you that I am 62 years old and that makes a difference as well. Best of luck to you and keep us informed.
mvk
Wow Beach, seems like you have had a difficult time. I hope that you will find your comfort zone soon. This is not an easy disease, that’s for sure.
I also ask my doctor questions, non-stop. And he is wonderful in answering them. He will see me in 3 weeks after my RAI, so I’m hoping, from what I’m reading, that he will catch my hypothyroidism on-time/early, so that I don’t have issues.
I have never been on any other meds. I feel that I have had Graves disease for years and just chalked a lot of it up to getting older. Glad I never took Methimazole.
Kimberly gave me a site that I can go to that will help be prepare for the RAI. I watch my granddaughter in the daytime, so I will be glad when this is over so that I can take care of her again.
Thank you for your information and thoughts. I will keep you posted on how I do tomorrow.
Maria
Mariaboo,
Your doctor sounds really good and that he will follow you closely so that you don’t have too much problem post RAI; if at all.
Just for myself, I think because I am going into menopause, my entire hormonal system is out of whack as we know the endocrine system is all tied together thyroid/female hormones. A nurse practitioner from up north where I came from who I have dealt with for years told me I have a double whammy plus she said that my Graves was most likely triggered by my going into menopause. This can happen and I have read about that also.
I was told that the weight will probably start coming off in time as the thyroid hormone does not work overnight; plus it is not a weight loss medication; just to balance our thyroid and then of course we have to watch both diet and exercise which I already do diligently.
I compared notes with some women going into the change who had RAI and they had the same exact issues with the weight.
It is neat that MVK and I are on the same timeline and can compare notes.
We are all so different and I was always the type that had problems with any medication or treatments or surgeries as I had minimal in my lifetime and I get impacted very strongly as why I was against RAI for myself and surgery was 100% out for me yet I had to accept that if I wanted to live, I needed to do something about my Graves symptoms. So many do just fine though as you can read the archives here also as maybe just takes some longer than others to get back to feeling normal.
Good luck tomorrow….beach45
Thanks MVK for the positive feedback. I am scheduled for my RAI at 1:30. I, like you, have constantly struggled with which treatment is the right treatment. I am going in today and still thinking “should I have had surgery”. That doesn’t help with the positive side of this. Even after researching and researching, I have second guessed myself right up to the moment. Crazy isn’t it?
I am 59 and hope to maintain a comfortable weight gain. Sounds like you are doing well with that.
Thank you and I will keep everyone posted. You are right. This site has been a real lifesaver to me. The internet answers to your questions, tend to freak me out.
Maria
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