[cath2284]

#1019747

Dear All,
I am getting a radioactive scan next week and if my "uptake" is good enough then I will get RAI a few days later, but I am having second thoughts. Two big concerns–first, not to be vain but I have always been a super active good in shape person and the thought of eating carrot sticks and working out but still having weight issues when I have never been overweight in my life really concerns me; second, I have heard from several people who have had their thyroid out that they would NEVER do it again and to do everything you can to save it, mostly because of how hard it has been to get the correct dosage of thyroid, so many visits to the endo, lifelong meds, etc. From those who have done RAI, what has been your experience both with overall weight/health post-RAI and how hard or not it has been to figure out dosage?

Thanks, Catherine

[Katherine]

#1073827

Hi Catherine,

Here is my story in regards to weight: I was one of those who gained weight while hyperthyroid — about 10 pounds. I started taking ATDs and gained another 10 pounds. As we started to get my TSH back to normal, the weight slowly came off. I don’t excercise (bad, I know, but I was SO tired all the time) and I didn’t change my diet too much after being diagnosed. Out of the 20 pounds I gained, I eventually dropped 15.

After 2 years on ATDs, I decided to have RAI done (June 2008). I lost about 5 pounds after RAI and before starting the synthetic hormone (Aug 2008). I gained it right back but haven’t gained any more. So, my net weight gain through all this is only 5 pounds.

As far as getting the dosage figured out, my inital dose was a little high so my doctor changed it in Dec 2008. I’ll go in for a blood test in late May/early June to see if this gets me to where she wants me to be. Overall, though, I feel so much better on the synthetic hormone then I ever did on ATDs. It’s really easy to take and very affordable, so don’t let the idea of having to take a pill every day stop you from choosing RAI.

It’s really up to you regarding which treatment you choose, as long as your endo can provide you with guidance along the way. I was so scared to have RAI done but in hindsight I’m very happy with the choice, especially after trying ATDs. The nice thing about the ATD treatment is that you can always change your mind and go with surgery or RAI if it isn’t working out.

I know other people on this board haven’t been so fortunate with the weight gain and having an understanding endo, so it’s important that you hear their stories too. Hopefully it’ll give you an idea of what to expect, although your experience could be completely different.

Good luck,
Katherine

[Mickey65]

#1073828

I did the RAI about 2 months ago (Dec 12th) and feel SO much better now. I’m not hypo yet – according to my endo, but feel like I did before all the Graves symptoms really hit me. I kind of feel as if I’m at the "jumping off" point before I go hypo now that my runaway thyroid has been curtailed.

My endo said RAI was the safest way to go – and I’ve talked to others (including a co-worker) who highly recommended it.

If you have Grave’s disease, your thyroid is "diseased/dying" – so there’s nothing you can really do to "save" it. You might as well face it and take care of things.

Heck, I lost my gallbladder 10 years ago and I’m doing fine without it. I know I’ll manage just fine without a functioning thyroid too.

I’ve gained back about 10 lbs since the RAI (I had lost about 20 I think), but I was told once I get on the replacements, everything will "even out" – altho I know I have to start watching what I eat anyway! Which I’m not really doing right now anyway!

As for the dosage for the replacements – I’m not on them yet. I had a post 3-week appointment with my end after the RAI, and now I have to see her every two weeks 3 to 5 times and get a check-up and do bloodwork each time and she’s monitoring my T3’s and T4’s and the other things to see where I am and when I go hypo.

I just did my 2nd appt with her on Friday, so I’ll know soon when I go on the pills for life!

RAI was a breeze. Took a big blue pill with a big cup of water and was told to go home and stay home and away from other people for the weekend (I did mine on a friday – 45 minutes after the scan. I had a 60% uptake!). So I just went home, watched movies all weekend and enjoyed myself. I didn’t feel any different, sick or anything else. I might as well have taken an aspirin – no difference!

I just didn’t want to get my throat cut open, nor did I want to waste my time and money taking all those same pills you did and then find out I’d have to do the RAI anyway. Just got it done and over with.

Good luck! It’s a breeze – don’t worry! ” title=”Wink” />

[Ski]

#1073829

I just wanted to jump in and say I’m another RAI success story ~ the only thing I would change is that I would have a talk with the dosing doctor to make sure that we were on the same page, with complete ablation as the goal. Once I had a dose with that as the desired result, everything went fairly quickly, and one day, after starting the replacement meds (a few months out), I found myself actually skipping into the grocery store (no spring chicken, me!), and I knew I was on the road to real health as I knew it before.

Now I feel pretty much completely well, though I’m 12 years older than when this all began, so SOME amount of "less than" is to be expected.

TOTALLY off topic, I think we actually have an advantage, having a thyroid condition, because many people suffer tiny deficiencies in thyroid hormone levels as they age, but no one makes a big deal about it (or even notices, in many cases), and that can result in long term effects of subtle hyPOthyroidism which again, are taken for "just getting older." At least we’re on the road to finding our perfect level, we’ll notice when and if we leave it, and we’ll also know what to do to fix it.

[dsarmien]

#1073830

Hi, Catherine — I was diagnosed with Graves disease at 35 years of age and chose to have RAI treatment. I’m now 50 and have been on the same thyroid medication dosage for as long as I can remember. My doctor and I were able to establish the correct dosage for me right away. My son, who also has the same disease, as well as TED, is still working on getting the right dosage. I’m confident that this will happen soon. My son & I will need to take a little pill for as long as we live, which is not a problem. I’m just grateful that we have easy access to the medication here in the U.S., as I know that this is not true if you live in another foreign country. I experienced some weight gain & hair loss after the RAI treatment, but lost the weight & stopped losing hair right after I started taking the thyroid medication. I’m glad to say that I’m at the right weight for my height & still have lots of hair even at the age of 50. I have no problems physically or emotionally that is thyroid related. Currently, I’m very busy trying to help my son get the right treatment for his TED.

I wish you luck, & I’m very confident that the RAI will also be a success for you, should you choose this type of treatment. Take care.

Regards,
Dolores

[meb]

#1073831

I was told that it would be simple to maintain good thyroid levels after RAI, but after several years mine are not perfect. I have had inexplicable weight gain and loss, but it has been within 10 pounds so we’re not talking about really unhealthy (or unbecoming) levels. I used to maintain an extremely stable weight so it is noticeable to me, but my doctors don’t seem to think it’s a big deal. I also fluctuate between needing to use the bathroom constantly and having constipation. And most recently I’ve developed carpal tunnel, which may potentially have some connection.

That said, I believe most doctors will tell you the risks associated with hyperthyroidism are much greater – including serious heart, lung, and sight problems. I was allergic to the meds for hyperthyroidism as well. And for those who are considering pregnancy, your ob/gyn will thank you for having RAI now, because I’m told it is much easier to handle pregnancy after RAI.

In the end I think I’m glad I did the RAI, I just wish the treatment for hypothyroidism were more precise, and that doctors were better educated about Graves in general.

[elf]

#1073832

"I have heard from several people who have had their thyroid out that they would NEVER do it again and to do everything you can to save it, mostly because of how hard it has been to get the correct dosage of thyroid, so many visits to the endo, lifelong meds, etc. "

I had RAI, and what I notice all the time is struggle of people determined to keep their thyroid and never feeling well even if their tests are all within limits. How do you help a person who has all her freeTs, antibodies tests and TSH normal yet her hair falls out, she can’t eat, has terrible anxiety?

I went hypo 5 months after RAI (was eurothyroid for 5 months so wasn’t taking anything), I never noticed that hypo stage, nothing like you hear sometimes of "hypo crash". Started taking 100mcg of Synthroid and was taking it for 2.5 years. Just recently lowered to 88mcg. That’s all!!

I was afraid of lifelong threat of my thyroid ruling my life. Having to watch medication, diet, herbs, vitamin ingredients, tests much more often that once every 6 months or once a year with Synthroid. Never sure how long your remission would last, if you ever get to that stage. It was just too much for me.

[Author]

Posts