[Julie3588]

#1067708

I received RAI in June 2009 and went hypo in August (2 months later). I gained about 10-15lbs while hypo but now that my TSH is "normal" (1.82) due to taking Synthroid (.112mg/day), I am back to my normal weight. I did not change any lifestyle habits so I assume it had to be the meds bringing by levels back to normal that brought my weight down. I had a similar weight gain when I went hypo after being on methamizole but as soon as I went off of it I returned to my normal weight. I can only speak for myself, but I have found that as long as I am in the normal range and feel decent, I do not have a great deal of trouble maintaining my weight. The weight just seems to melt off after I am no longer hypo. Hopefully this helps, I too was terrified by weight loss horror stories before I got RAI ” title=”Smile” />

[Nick]

#1067709

Lucy wrote:…But, I am even more worried about RAI. I was told that I would only need to be in isolation for about 20 minutes following the treatment, and shouldn’t be around many people for 3 days. But I just read about someone who was alone for a week. Can I hear from others what their length of isolation was. I also am a teacher and worry about how I will feel immediately after. Should I wait until school is out. Help, please!
Lucy

Lucy,

Some studies suggest to follow at least the distance limitations for a min of 3 days, and for a week sleep in a seperate bed, use a different bathroom and avoid any contact with children and pregnant women. These studies are avaliable online.

Good luck

[Shazzer1976]

#1067710

Hi!
I’m new to this board. I came across it while looking for information about orbital decompression surgery but I have also read some other posts with interest. It has been more than ten years since I was diagnosed with Grave’s disease and I too was treated with RAI.

I would like to reassure you that this treatment was successful for me and I have had no negative side effects from the treatment. My weight is stable although I can be prone to gaining weight – more due to my lack of exercise and large appetite! My energy levels are much better than when I was hyper – I am now slightly hypo, taking 50mc of thyroxine daily. This is much more preferable to having to take block and replace therapy and the other concoction of drugs I used to take along side that – beta blockers, iron tablets and so on.

From what I can remember of my treatment I had to flush the toilet twice after using it and stay away from public spaces for a while. I was allowed into public after about a week but was to stay away from pregnant ladies and not hug people! I was also told not to get pregnant for at least four months after the treatment, but as a 22 year old student, I really wasn’t interested in that! I can remember being a little weepy after the treatment but that went away and pretty soon as I feeling really well again! I continued to take the carbimazole treatment after the RAI – infact I think I took an even higher dose. I had quite a severe case and my doctor wanted my thyroid well and truly zapped into submission!

I was advised not to have surgery due to scarring, possible damage to my voice and I was also told that surgery is not as accurate as RAI. I have heard of people ending up being very hypo after surgery and I really would have to live with that long term. I raised issues about having radio-iodine as a young woman and possible longterm consequences. I was reassured that there really are no long term effects.

I hope your treatment goes well and you see the same improvements in your well-being that I have experienced.

Sharon

[julies]

#1067711

Hi Lucy

Please do not worry about RAI.. I had this treatment on September 4th this year. Although I had some side effects that where on the worse side of things. My thyroid was sucking in at 90%, so when it started to die off, my blood presure and anxeity went through the roof. I had pain in my neck, that made me cry the day after the RAI pill. I went through all of that and still believe it was the best thing I could have done for myself. The three days I spent away from everyone in my family was nice. You can be around your pets, so do not worry about them, if you have any. I spoke to my vet. It has been almost two months. I feel great. No weight gain, I watch what I eat. You should speak to your endo, and really get some facts about this treatment. It is worth the time, and research. I hope you feel better soon.

Julie ” title=”Razz” />

[enough3]

#1067712

I’m scheduled to have RAI the end of this week. My Endo told me that I DID NOT have to be away from my 3 children and dear hubby. She said that I should sleep in another room for the first 3 nights, flush the toilet, no kisses, if I sweat…then take a shower:), and not to cuddle with my children to wear they are near my neck. That is it. I guess we all have different advice from our Endos.

[Nick]

#1067713

Just wanted to give an update on how things are going for me so far. Today I am day 14 (2 weeks) post RAI. I had a couple of days of hyperactivity (during the 1st week), but nothing more that the usual graves symptoms we experience all the time.

My weight is stable (added 2lb so far), heart rate in the mid 70s-80s, BP 125/70 and respiration rate normal at 18.

I am still on Metoprolol (25mg/day) and Tapazole (10mg/day) – same dose from before the RAI. Will have a follow up labs for the first time post RAI next week. I expect to see a slight improvement with TSH moving higher based on the way I feel.

So far I have not experienced any salivary gland dysfunction, thyroid pain, eye problems or any new symptoms.

No dumping so far either, let’s hope this will continue the same way long term. I will keep you posted.

Nick

[Ski]

#1067714

Thanks for the update, this is much appreciated! I wish you a smooth journey in your healing! ” title=”Very Happy” />

[elf]

#1067715

Nick, nice to hear. I had my "dump" 3 months after RAI (10 mci, too). I started my TED symptoms before RAI, so my eyes just kept on going after RAI. Good wishes in your recovery!

[enough3]

#1067716

Well, I did it. I took my 15mci pill on Friday. I decided to isolate myself from the kiddos till Monday:( I’m very bored:(

Last night I felt terrible. My eyes hurt, and I had a terrible headache. Today I feel fine..a little tired, but okay.

Seems like my dose for RAI is a lot higher than everyone else’s…..kind-of worries me.

Anyway, I’m on the other side now…..

[Ski]

#1067717

That’s not a much higher dose really, in the large scope of things. I had 10 (later, my endo said I should’ve had 15 to deal with it properly), then I had to have 22 the second time (2 years later) in order for enough to remain in my thyroid to finish the job. Sorry you’re lonely ~ that was hard for me too! Vegging out and watching TV is something I usually like to do, but when I was forced to, it wasn’t as much fun….. I hope you’re feeling "healed" very soon!

[ewmb]

#1067718

I had 15 millicuries too. It did the trick. Took me about 4 months to go hypo. Keep drinking and sucking on something to keep your salivary glands clear. Hope you feel even better tomorrow.

ewmb

[Bobbi]

#1067719

How much RAI anyone gets is really variable. Someone with a slightly lower uptake, but a large gland, will get a different dose than someone with a high uptake and a small thyroid. So we cannot compare, really. What matters is that you were given enough for the RAI to affect YOUR thyroid. If you got slightly too big a dose? If the RAI is not taken up by your thyroid, it is eliminated from you body in a very few days. To help that along, drink a lot of water, and suck on some hard candies.

I do hope you are feeling much better soon.

[enough3]

#1067720

Thanks.

I feel totally fine today (Monday).

I’m little concerend about potential weight gain, so I’m going to start eating like I used to before I had graves. I have had the freedom to eat whatever I want these past 2 years…so back to lower fat foods:)

P.S. I do have a weird metalic taste in my mouth…yuck.

[ewmb]

#1067721

I had that same taste. I thought it was from the RAI but was never sure. It didn’t last too long.

ewmb

[jetskichic77]

#1067722

Hi,

I was diagnosed with Graves over a year ago.. I could not tolerate the PTU, due to leg cramps and swelling. I switched Endo’s and now see a specialist in Boston, MA. I was off all meds for some time while I searched for a new doctor, and when I saw her, she has put me now on Methimazole and has asked me to see her again in six weeks so we can discuss RAI treatment. Since starting this new medicine, I feel better than I have in years, so I am fearful also of having this treatment done as I havent really given oral meds a chance. However, I have noticed in the last few weeks that one of my eyes is starting to appear more "open" than the other, and I dont know whether that’s due to the graves, or the new medicine.. I certainly do not want the bulging eyes, or the weight gain.. So, I wonder what is the best treatment for me.. I know its all indivudual, but very very scary. I have heard the meds cause you to gain weight, lose weight, and all this information is overhwhelming!!!

[Author]

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