[elizabethlenz]

#1059304

Hi! Back in 1998 I had my thyroid removed. They left a little tiny piece so they didn’t damage my vocal cords. Upon removal I was told it was the best decision I could have made, since it was Graves with Hashimoto tendencies. They claimed that it wouldn’t have been killed with the RAI. I have no idea if that’s true or not. So, here I go, taking Synthroid all these years. I was a terrible pill taker, and missed doses all the time. Sometimes I didn’t take it for weeks. Yet, my blood work was always borderline OK. Yeah. That’s because the stupid thing has now grown back in its entirety! To quote my test results, “Thyroid is of normal size and texture”. Seriously? All these years dealing with mood swings, psoriasis (didn’t know that Graves is autoimmune, too), and generally feeling like a wench all of the time, it was a great feeling to know that there was at least a reason. After having to undergo a total hysterectomy (or ooverectomy, as my hubby constantly points out), I thought I would start to feel better. Instead, I was feeling worse. Especially after I ate. As soon as my body starts to digest my food, my heart pounds. 200mg of beta-blockers has certainly helped. I have a few questions, and my addled little brain needs assistance. How long after RAI do you typically start to feel changes? It’s been 3 weeks for me, and I haven’t had a single side effect, nor have I felt even the slightest change. Should it work on Graves with Hashimoto tendencies? Anyone else go through anything like this with the thyroid growing back? Have a great day!

[Kimberly]

#1173979

Hello – Sorry to hear that you have found yourself back on the Graves’ rollercoaster ride!

We’re fellow patients here, not docs, but the one thing I am aware of that could affect RAI with Hashi’s is that with Graves’, the thyroid will literally gobble up iodine, whereas in Hashi’s that is not the case. So potentially, this could affect the amount of iodine that is taken in by the thyroid after treatment.

I read one article from the New England Journal of Medicine that said it can take 6-18 weeks for RAI to fully take effect. This article also mentioned that if the patient is nearing the 90-day mark with little or no result, that’s when they start thinking about a second treatment. So it’s likely much too soon to tell at the 3-week point.

Hope that you can get some relief soon!

[genuinruby]

#1173980

@Elizabeth, Wow! you are the first person who has proof that the gland can rejuvinate. How did the doctors determine that this has happened? Because my labs are still unstable after nearly two years, I keep asking my doctors if this is possible and they say they have never heard of a single case. So, please tell me more!

[spenanelson]

#1173981

I too had my thyroid come back several years after RAI! They said it was not probable but was possible. My did not come back as normal size and texture and we did another RAI. It took about 12 weeks before I hit bottom and when I did it was not pretty. One day I woke up and could barely move. Then it was back to synthroid and back on the roller-coaster.

What I was told is that if there is even one cell left after surgery or RAI, there is a chance it can come back. But that chance is so rare that the majority of people will not experience that.

So, at least I know of someone else know that has had the same experience as I did! I see it as a very exclusive club of very extraordinary people.

[wenaroo]

#1173982

Wow! This may just explain my latest lab results. I’ve been very stable since my surgery 12 years ago, but I recently started feeling all my hyper symptoms again and lo and behold! I just got my lab results today telling me my T4 is above normal again. I will definitely have my doctor do what it takes to see if my thyroid is regenerating – my surgeon also left a tiny bit to protect the parathyroid.
Thanks for sharing and letting me know I’m not a paranoid freak – although possibly an oddball.

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