Hi Everyone,

I am almost 5 moths post RAI and definitely hypo now. I started taking Levothyroxine about 2 months ago at a low dosage of .025. The next time I went to the endo my TSH was 72! and she upped the levo to .1. I felt better for about a week and thought things were on the upswing. That lasted about a week and then I went right back to feeling very hypo and all the same symptoms that go with it. So this Monday I went and drew my labs early and yesterday heard from the endo office to up the levo to .15 which I did this morning. I see the endo in the office in less than two weeks. Is this a typical course of what happens? This is really wearing on me. I guess I need a pep talk from someone out there that is past this stage. Thanks for your help.

mvk

Hello - Hopefully, you will get some other responses from those who have had RAI, but dialing in to the right dose of replacement hormone is definitely a trial-and-error process, as each patient is different. Hopefully, this latest adjustment will finally get you some relief!

Hello MVK,

Sorry to hear your struggles; I had RAI too about 5 months ago May 3, 2012; went hypothyroid around August 20, TSH was 54, FT4 0.22 and FT3 just about non-existent; went on 75 mcg Synthroid; horrible; went on 100 mcg Synthroid and TSH is 30 yet FT4 is now in range 1.08 and just yesterday went on 125 mcg now Levothyroxine; I cannot shake off any weight as I was already heavy from 20 months on antithyroid MMI. Well okay I lost 5 lbs yet I blew up especially in my stomach area; now I am having very bad lower leg pain, muscle cramps, pain in my feet which I am guessing is all associated; what my endo told me this past Wednesday it takes time; cholesterol went sky high; hanging in there as seems like a process and for some more than for others! You will get there with the careful monitoring of your endocrinologist and in time as my doctors tell me it takes a while to get to where we need to be post RAI. For me I am getting a little impatient as unfortunately I do not feel well; my endocrinologist said he doses me based on 1.6 mcg per kg of weight; yet Synthroid literature says 1.7 mcg per kg of weight for the T4 dosing. Good luck with all this! beach

Dosing of thyroid hormone is certainly not anything I am familiar with, except at the time it is time to first begin administering thyroid hormone. And my endo did not do it then, either. My endo always goes by how I am feeling, plus the labs. AND if decisions are being made about
to change the of Synthroid, in any time less that six weeks to three months, I have learned that is terribly wrong, and you and your doc will not be working with accurate decision tools, either by how you are feeling, and/or by the labs.
I look forward to the facilitators's comments here, too. There have been some very good explanations of how it takes way longer than we want it to take to know “where we are” with our dosing of thyroid hormone, and as I said previously, it is determined by labs AT THE VERY LEAST six weeks apart, two months+ is preferable.
Kimberly, Ski and Bobbi, please chime in on this subject.
And, of course, ask your ends these issues I have raised, too.
Shirley

If I had known the struggle post rai was going to be. I would have just state on the pills it's more easier. I'm already impatient enought as it is!!! Or I would have just had surgery because with that you end up with faster results !!!!

I would just start getting angry at the doctors they know nothing!

Sorry, in my post i omitted the most important phrase.
"Dosing of thyroid hormones BY WEIGHT OF THE PERSON. That is the point of my entire post.
Sorry again
Shirley

My endocrinologist is a professor at a pretty large Medical University who goes by lab values only and he makes that clear; he tries to bring the person up to where they need to be pretty quickly post RAI yet then moving forward he waits 2 or 3 months to see how the person is responding. He goes by the American Association of Endocrinologists guidelines which gives the information on dosing by weight. He also had a TT himself. Seems that some doctors do things differently as I've had consulted with 4 different endocrinologists in my area and they are not all on the same page. What I have heard from most being treated is that 6 to 8 weeks is about average of in between testing as I had this same when I was on Methimazole myself 20 months and I know that it takes that long at least for me to see significant changes. This is a slow process and no cannot be rushed. Plus it is better in my opinion if the patient can be treated based on both lab values and symptoms.

Hi Beach 45,

I am sharing your pain it sounds like right now with these adjustments. I just feel awful. Hopefully, this last increase in meds will help all of our symptoms. I totally agree with you that I appreciate my endo listening to both me and my symptoms and the lab values whenever I recognize that things are not going well. My levothyroxine dose started at .025 in July when my TSH went to 7.74 (norm .4 - 4.5) and I felt horrible for the next month till my next appointment and it showed. My TSH went to 72. No wonder I felt so bad. She increased the levo to .100 and I felt OK for about a week and then plummeted again and this time I had the good sense to go get labs again and she increased the levo to .150 three days ago. There is no way waiting a month between doing labs worked for me. I, too, am having lots of muscle pain and my eyes seem much more irritated (which scares me a lot!). My weight is impossible to deal with right now. I am trying really hard to eat very healthy and exercise. I feel so weak right now and I hate all of this. I sincerely hope you start feeling better soon and I hope I do too. Keep in touch.

mvk

MVK,

I thank you very much for sharing this as I thought it was not really happening to me; I have very similar; yesterday I was in so much pain in my lower legs and feet that I thought I'm going to end up as a criple. Yet I realize it is levels and all I keep hearing from people who had RAI that it does get better once you get balanced; some even say even after balancing it takes some time to feel more normal. It certainly is a process! My doctor and I had discussions on whether to put me on 112 mcg or 125 mcg yet then he said okay we'll try the 125 yet if it looks like I'm going too hyperthyroid again in a month, then down to 112 mcg. He told me originally it can sometimes take a year to normalize for some, that is; then I talked with people where it took almost 2 years to normalize. People I know who had RAI said why is your doctor putting you on only 75 mcg? I felt fine to start then I crashed. I then went on 100 mcg yet then I started feeling yucky again like I have this spurt of energy to start then it goes downhill fast. I don't even like to think of weight as I listen to people who say I had no problems with weight yet I sure the heck have problems myself and it all started for me on MMI prior to months. I never had any weight problem even after quitting smoking 9 years ago and I diet and exercise too as I do more than some people who are probably in best of health! Seems like we all have unique experiences with this; you and I sound very similar. I do hope that you will start feeling much better soon as I hear you! Sounds like you are working with a good doctor! Take care!