[MilkMoney]

#1059312

Hello all.

I was diagnosed in May of 2011 and had RAI in July 2011. Went severely hypo within about 6 weeks and was put on 125 mcg of levothyroxine. I think my tsh was like 99 or something outrageous. After about a month on 125 mcg everything had been fine for about a year. My bloodwork was being tested every 6 weeks to 3 months and was showing normal.

About 2 months ago I started feeling hyper again. I was having all the classic symptoms. Sweaty, headache, achy joints, tremors, heart palpatations etc. I had more lab work done and talked to my endo who said my TSH was low (.4) so she was reducing my levothyroxine down to 112 mcg and I was to have labs done again in 6 weeks.

It’s been 4 weeks on the 112 mcg and I am feeling WORSE. All symptoms are the same but more severe. My guess is when I go see her in 2 weeks, my lab results will show even higher t4 than before.

My question for the experts here is this. How can this possibly happen? If my thyroid was ablated completely (I had a very large dose of I-131) and my original TSH after the RAI was showing basically a nonfunctioning thyroid, how can my body start needing less and less levothyroxine? I could see possibly needing more, but not going the other direction.

I asked my endo if it were possible the RAI didn’t work and she that was absolutely not possible because of where my T-levels and TSH were 6 weeks after my RAI. What she didn’t say is exactly how this can happen? I asked on here a few weeks ago if people had ever heard of thyroid “regeneration” and nobody had. What the heck is going on here?

[Bobbi]

#1174027

What you will get from us is guesses, which isn’t necessarily helpful. There ARE situations which would necessitate more/less replacement over time. Losing/gaining a lot of weight. Going through menopause. Perhaps other situations. There have also been discussions occasionally on this board about the regeneration of thyroid tissue after surgery. I’ve not heard of it after RAI.

I will tell you that at one point in time I gradually went from 125 to 0 replacement hormone, over a few months. I was considering calling my thyroid after the Terminator, because it seemed to have come out of the RAI “truck fire” skeletal but still lethal. Then, after about three months on no replacement hormone at all, I had to go back on it, and gradually increase it over time, back up to 125. Go figure.

The only explanation I got at the time was that the disease is autoimmune; that “some” thyroid cells could still be present, functioning, and that the antibodies were revving it back up. Not a comforting thought at the time. But since then I have only had to have minor adjustments of the replacement hormone from time to time, both up, and down. I’ve been on mostly the same dose for the past 12 or 13 years.

[LR16661]

#1174029

I too am having the same problem right now. This is actually my first post. I was diagnosed with Graves in January 2012, had my RAI treatment in Feb.2012, went hypo, started meds..blah, blah. Right before our vacation in June, something just didn’t feel right, so I requested to have labs done. Of course they were off, so they lowered my dosage. 6 weeks later, same thing..lowered them again. This time I was only taking 100mcg, 5 days a week. 2 weeks later, was my scheduled apt with the endo, and what do you know…..they were still off. He was and is puzzled to say the least. He took me off meds completely, and ordered blood work for 2 weeks in case I went hypo. Well…..my two weeks are up, and I am still hyper! I will get my blood work tomorrow, and get the results the following day. I felt rushed into the RAI in Feb, and I won’t make that mistake again. My endo said I would need another treatment if my labs came back as low. I just don’t want to put that junk back into my body AGAIN. He said it is very rare, but does happen. I have to say, it is much nicer being hyper than hypo, at least I want and feel like doing things. Husband is supportive, but tired of the constant mood swings. I have to say to him…sorry, but sometimes…I just have to ride my broom, let me ride, then it will be done and over with. lol

[spenanelson]

#1174030

I am that rare case where my thyroid did come back 4 years later and it was pissed at me. I tried PTU and it only made it worse and grew at an even faster rate. Plus the PTU did a number on my liver and white blood cells. I had no choice but to do RAI for a second stronger dosage. I still worry when my labs are off and I have annual ultrasounds to monitor my non existent thyroid.

I wanted to manage my GD with out the second RAI. And I fought it tooth and nail. It is still a struggle but the long term affects of being hyper are far greater than the struggles with being hypo.

Best of luck to you. I know it is rough. But I LOVE your broom analogy. I have to share that with my husband and family. They all think I am NUTS.

Good luck!

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