[beach45]

#1059089

I am on the other side of the fence as far as treatment for my Graves disease. After being on Methimazole many months and going up and down in levels and not stabilizing, I decided on taking RAI (15 millicuries) early May 2012. I did have the option of having TT though.
My endocrinologist said that maybe by 6 months I will know how much Levothyroxine (T4) (i.e, Synthroid or generic) I will need to take. I know some people do get balanced sooner and some later as I know of people a year or more post RAI.

I am a bit confused for future where my levels should be post RAI and also for those who take TT to feel my best. I know the American Association of Clinical Endocrinologists (AACE) recommends that TSH lab values ranges for patients should be 0.3-3.0. Then I hear of other endocrinologists, and a thyroid doctor who is on another medical forum, that TSH should really be around 1. My endocrinologist and I discussed this prior to RAI as that was a question I asked and he said for me, over age 50, my TSH range should be between 2-3. I know for a fact that if my TSH is 3.3 and this is with a normal Free T3 and Free T4, that I feel lethargic, cannot lose weight and depressed because this happened before I became hyperthyroid back in May 2010. I also read that Free T3 and Free T4 are better for the patient in the mid range or a little higher or is this correct?

I realize from reading here that people feel better at different TSH levels and there is not necessarily one size fits all and that the lab value ranges for TSH recommended by the AACE seem to work for most people post RAI or TT?
My endocrinologist told me immediately he does not go by symptoms only lab values. I feel he is a very good doctor yet a bit disturbed he doesn’t go by symptoms also (and on some of his reviews others had this concern also). Why I am asking these questions. I meet with him this week and if there is any advice from people of what I should discuss or question I appreciate it. I did not go over Free T3 or Free T4 with him yet he does testing for that. I only have TSH, Free T3 and Free T4 tested now every 3-4 weeks post RAI. Prior while on Methimazole, I had extensive blood work done yet only the antibodies back when I started this journey in 2010. That is when I found out my TSI was high.

Why I am concerned about symptoms as when I went hypothyroid two times on Methimazole, I got so depressed that I did not recognize myself and in my 50+ years of living, even with going through life tragedies, I never was so depressed. This is another reason why I am concerned about where my post RAI levels should eventually end up. I realize that I may not know this until I get on some T4. Yet I am concerned after feeling so depressed two times as described above and I will mention to my endocrinologist yet I know a lot of these doctors just prefer to place the patient on antidepressants (which I am against) instead of keeping thyroid levels balanced for the individual. I realize also getting to that balance post RAI sometimes people temporarily may go on antidepressants.

I am also am limited to good endocrinologists who work with thyroid in this area and I know of one who is further away from me who supposedly works with both lab values and symptoms and keeps TSH around 1. Yet I do not know post RAI if it is good to be switching doctors especially if I do not know when I may go hypothyroid and actually if I go hypothyroid as I know some people need to take RAI more than once and myself being over 3 weeks post RAI (I just had my first blood test to check thyroid levels), I still feel hyperthyroid. I know that does not mean that I will not go hypothyroid as it probably is too early in the game for me. If I for some chance did need to take RAI again, I may opt for surgery (TT) instead.

If anyone could please give advice on this matter, I really appreciate it. I know that two people may not feel exactly right at the same levels.
I will not be seeing my endocrinologist after my visit this week as he said moving forward that we will do my blood work every 3 weeks post RAI and he will call with results and prescription if needed. He is almost a couple of hours from my home and I get blood testing close to home. He is very difficult to get in touch with as he is extremely busy and travels to different locations. The office squeezes me in which I typically get maybe 10 minutes top with him so I need to make the best of my visit and I write my questions and concerns down in advance, yet I would please like to hear from others post RAI or TT as maybe there are questions I have not thought of.

I have read many past posts here on lab values and depression post RAI or TT, yet I feel there are always some people who may not have shared yet on this topic and I know the facilitators here always have very good advice.
Thank you in advance. (Sorry for such a long post)….beach45

[Bobbi]

#1172062

Please try to take one day at a time. Typically, that is more than enough for any of us to handle. Right now you are worrying, in advance, about something that may not happen. Don’t get me wrong, you might indeed find yourself hypo, and feeling depressed. But, you might not. I can only give you anecdotal comments of my own — which are no more or less valid than your own anecdotal experiences. But I have felt hyper/hypo/completely fine –at different points in time, obviously — when I have had blood work done, and found out that my TSH level was 2.0. I have felt completely OK, and found out that I had a TSH of 13 — most definitely way, way over the line into hypoland. I was not gaining weight, either. Go figure.

Anyway, if we go in feeling hypo, and the tests show that we are in fact hypo, then we begin to think that we know when we are hypo. Or hyper. Or just fine. The tests reinforce our subjective opinion, in other words. My experience (16 years worth of blood tests) has been that occasionally I am “right” and my levels are off. More often than not, however, I don’t know what my TSH levels will show. I also thought — for a long, long while — that I felt better at the hypo end of normal than at the hyper end. I have been proven wrong on that score as well.

Essentially, there are too many things that go on in our bodies and in our lives that impact how we feel. We are really complicated beings. TSH is not the end all and the be all for how we feel going forward.

[beach45]

#1172063

I definitely need to take things one day at a time. It has been difficult ever since diagnosis of this disease and the up and down for months on Methimazole and I am on my 3rd endocrinologist since the one I liked left my area. I have not been having a very good time yet who does with this disease?

I realize that I am worrying about things that may never happen and it is good to hear this from you Bobbi; someone who has a lot of experience with this thyroid business for years post RAI. I like this quoite: “Do not anticipate trouble, or worry about what may never happen. Keep in the sunlight.” ~ Benjamin Franklin.

I read a lot of negativity about people on forums having problems post RAI or TT or even being on Methimazole and even some past posts on this forum. I do feel bad for people who have been or had been experiencing problems. I know too there are people I know personally who had RAI and have been put on thyroid hormone and living productive lives without much trouble.

I look at my own blood work when on Methimazole and it seemed that the TSH lagged behind the Free T4 and Free T3 levels. I was very hypothyroid on MMI once with very low Free T4 and yet my TSH was 1.1; then I reduced dosage 5 mg and my TSH went all the way up to 13 in 3 weeks time. I only know from past blood work prior to Graves when my TSH was steady at 2.5 I felt pretty good.

It is good to hear Bobbi that you are not having problems with weight. I know that I hear some do; some do not; I have two friends here who are normal weight post RAI and one who had RAI 30 years ago has struggled for years with weight.
She also had a much lower dosage of the I-131 than I did which I do not know if that matters.

I thank you for sharing your experiences. I always love to hear positive outcomes and I realize that on most forums, we will hear more from those who are having problems as the purpose of the forums in the first place.

I will try not to project about negative outcomes and think positive moving forward. One day at a time!

beach45

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