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  • beach45
      Post count: 178

      I had my first 4 weeks post RAI endocrinologist visit yesterday.

      One of the issues discussed was that once I become stabilized post RAI that I will only need TSH testing. I had questions about where free T3 and Free T4 levels should be once the patient is stabilized post RAI. My endocrinologist said that once you are stabilized, that levothyroxine dosage is based on TSH testing alone. That the Free T3 and Free T4 levels would be right for me if my TSH is in the right range. For instance, if TSH was too high then it would affect the Free T3 and Free T4 levels to most likely go lower.

      I did research here on this forum from past posts and I concluded from what I read that once stabilized, that TSH testing is what is most important to go by.

      Or am I incorrect at my conclusion? I thought it would still be important after stabilization that Free T4 and Free T3 is still looked at? That TSH can fluctuate easily and that some people’s Frees can still be off even when TSH is within a certain range. Or say in the case of people who may not convert right from T4 to T3 which I understand is not very often from studies.

      We agreed that my TSH should eventually end up somewhere below 2.5 yet no lower than 2 (except I’m not sure why as he said TSH of 1 is too low for a person over 50). I am not there yet of course, yet I get confused because I read in other places that not only TSH should be tested even for those who have been on Levothyroxine for a while.

      Thank you for any responses in advance.

      beach45

      Bobbi
        Post count: 1324

        TSH does not fluctuate easily. It is a sort of running average of our thyroid hormone levels. They fluctuate more fluidly than does TSH.

        There is no universal agreement among doctors as to what level of replacement hormone is best. My own endo has recently — well in the past five years or so — changed her mind about keeping my TSH at 2. And I’m well above 50. But I may be asking her about your doctor’s belief. I would just as soon not risk bone loss, or whatever else might be a possible hazard of too low a TSH.

        beach45
          Post count: 178

          Bobbi, Thank your for the quick response!

          My endocrinologist is also a professor at a Medical University. Apparently, these medical practitioners in this endocrinology group are up on the lastest and greatest. His concern is just that; bone loss and heart rate levels for over 50s. Keep the TSH at a reasonable level. Some endocrinologists want to keep TSH at 1 and I know of two, one practicing for many years and a Harvard Graduate, another a Thyroid doctor. The latter is not in my area.

          I am seeing there is no universal agreement like you say about replacement hormone being the best.

          I am actually too ahead of this anyway. Yet I like to know ahead of time. Right now I’m still very hyperthyroid at 4 weeks yet of course it is too early and I know some endocrinologists do lab test post RAI every 6 weeks. This is a very different story though and I may post about my post RAI journey thus far. I know it takes a while. My endo said that some start going hypothyroid about 6 weeks post RAI, some much longer and he will give me up to 6 months. TSH right now is just about 0. Joy!

          Thanks again. I always get great information here!

          beach45

          mvk
            Post count: 33

            Dear Beach45,

            You and I are almost on the same track post RAI. I too am very concerned about my first labs. My free T4 was down (good!) but my TSH was .001 and in March was .002. I know it’s too early to be fretting but I can’t help it! I am getting labs again at the end of June. I’d love to hear from someone’s experience in this post RAI time. How long is this going to take to change? I know every one is different. Am I totally jumping the gun on this? I really do feel better. Less muscle pain, less heart palpitations for sure. Tremor seems less and less as well. I am taking those as good signs. Hang in there.

            mvk

            beach45
              Post count: 178

              That is cool mvk! Well my TSH is low too and Free T4 and Free T3 elevated. I’m kind of upset right now as it’s like I’m going in the wrong direction yet my doctor says this happens post RAI with some people and that don’t worry it will calm down in time; or else another dosage of RAI if by 6 months no improvement. That is questionable because if that ever happened, I think I’d go with the thyroid surgery. He is concerned yet said he has to see me every month to make sure my heart rate is okay and I cannot take a beta blocker if my heart rate is not consistently over 100 bpm yet it is around 96-98. My blood pressure is lower so he doesn’t want to introduce something until I have consistently high heart rate. So June 20th is the next blood work. I felt better here and there and then I get these spikes of anxiety. It was 20 months on Methimazole up and down and now this post RAI and I think I’m just losing patience. Plus my doctor did not tell me about what happens post RAI and I know other patient’s who have similar yet I think it is better if they advise patients first. I’m glad to hear you are doing well and I am being optimistic I will get there too in time!…beach45

              mvk
                Post count: 33

                Dear Beach 45,

                I’m with you. I’m not sure at all I would do the RAI a second time. There has to be something to be said about all the restrictions after you do this procedure. I hope we both don’t have to make this decision. Hopefully in a short time we will be able to say this RAI worked. Until then, I am thankful I can talk to you about it online. I cut my betablocker down to .25 mg /once a day yesterday and so far, so good. In a week, I am supposed to stop it altogether. It makes me nervous but I will do it if I am stable.
                I, too, am having anxiety at times over stupid things but I guess we just need to breathe!

                mvk

                beach45
                  Post count: 178

                  MVK,

                  It definitely is something to think about. My book here that is also recommended by the GDATF “The Complete Thyroid Book” by Kenneth Ain, M.D. and M. Sara Rosenthal, Ph.D., chapter 12 says that “about one-third of the time a second treatment with I-131 is needed to provide sufficient treatment.” Well I kind of wish I had taken that more seriously prior to my decision and I wish I had really read that paragraph provided in this book. I was treated 20 months with Methimazole prior and I hope even though they say that stopping the medication 7 days prior to RAI should make the I-131 work, I am now wondering. It now is 1 day past my 1 month post RAI and I do not feel well at all and feeling more hyperthyroid still. I feel my endocrinologist did not go over very well what can happen post RAI as he did this past week after the fact. I was told now even do not exercise until I start to go hypothyroid and get balanced. That moods can go up and down for 1 year post RAI and that with the TT you get on thyroid hormone right away and acted like well you should have known all this. I only knew stuff because I researched through good books and solid medical journals and talking with other medical practitioners yet if I had all the facts given to me out on the table, and I asked about how well his patients did and I did not get a good answer pre-RAI. Well after I do get better, someone is going to hear from me and I will make sure moving forward, that patients are made more aware so they can make the most informed choices. I also realize that there is no perfection with any of the treatments and given my extreme sensitivities to medications and treatments and surgeries, I was on the fence myself what to do. I personally think that doctors need to take individuals into consideration and not that we are all lab values. I will not go into any more details because I do not want to influence others who may want to take RAI eventually because there are people I know who it went very smooth for and then some who it did not.

                  Well I hope you do get off the beta blocker soon. My bp is too low to consider right now yet I keep checking my pulse. I’m having terrible insomnia again so it is like when I was hyperthyroid. Also terrible headaches which it is very rare in my 50+ years to ever have gotten a headache ever! So I have to give this time and patience and know enough if I feel too miserable to either go to the ER or my primary doctor as my endocrinologist is 1-1/2 hours away. I have a friend here who had RAI 7 years ago and she did not have a fun time the first few months post RAI so I know I’m not alone and I keep saying this too shall pass and it will be much better before I know it!

                  So best of luck with this and keep us posted!….beach45

                  NLBatten
                    Post count: 47

                    Beach45 – you could still turn hypo very quickly. My TSH at 4 weeks post-RAI was <.008 (same as before RAI). I was tested again 3 weeks later because I felt strongly I had Hypo symptoms and in just 3 weeks had shot to 7.8 TSH. So hang in there. My understanding is not everyone reacts as quickly as I did, but it can happen, so try to wait it out. I felt not great for first 3 weeks after RAI, then really good for about 2 weeks and then not so good again which is why I asked to be tested early. It is a rollercoaster ride for sure!

                    beach45
                      Post count: 178

                      NLBatten, Thank you for sharing that as it does make me feel better about this post RAI situation.

                      My TSH prior to RAI was 0.130 and then with the blood test 3 weeks later was 0.005. Worse than even in 2010 when started Graves/hyperthyroid as it was 0.007; well not that big a difference!

                      Worried that 20 months on Methimazole was not a good thing. Although my doctor said if I stopped the medication 7 days prior to RAI, this should work.

                      My endocrinologist said like what you are saying; it is going to be up and down; now he told me for a long while in fact maybe a year. He’s a real honest guy! Did not want to hear that as I am finding out he likes to give a worse case scenario. He said some people go hypo at 6 weeks some much later. Not to worry and stop being anxious he told me yet I’m a worrier as partially because of so much up and down for months on Methimazole I’m ready to get off this rollercoaster. Why he said to me, well you could have done surgery! Well he did not discuss in such detail before RAI as he is now post RAI yet I won’t get into that.

                      I appreciate that as yes I’ll hang in there. As we know, this is not easy yet I think there is a rainbow out there somewhere! My endo said like you all of a sudden you will start going hypothyroid and he said in between you will probably feel pretty good. I know hypo being there twice on Methimazole and one time especially it was miserable. He said don’t get a gun! LOL! I know it takes time and that my doctor is testing me every 4 weeks as some of the endos wait 6-8 weeks in between and my internist if he had given me RAI would have waited every 3 months between testing. My endo said that is not good.

                      So please keep us posted. I will try to share my story too as right now I’m in a bad mood about all this yet I will get over it. Lots of patience needed! Good luck in your journey!…beach

                      Jules
                        Post count: 85

                        I had20 MCI RAI in November 2010 was checked at 4 weeks and was euthroid ad in 4 more weeks 11/29 I was extreamly hypo 79 tsh.

                        My symptoms see,Ed hyper with hypo feelings mixes together. Shakey tired headache muscle aches racing pulse etc…

                        Still trying to get back to my normal. TSH only testing is not the golden rule when you do not have a thyroid IMO

                        I request t4 ft4 and ft3 when the doc does blood. My tsh is suppressed but my ft4 is at low range normal as well as my ft3. It is hard to get the doc to chech the tests I want run. My endo was a joke. I’m allergic to synthroid and he was telling me tough $#|+. Now I go to my primary and beg for the correct testing. I an going on my symptoms and I am still hypo. Once my frees get to mid to high normal I expect to see lower cholesterol normal heart rate, no anxity no joint pain and lose some wight. I cn not eat for 7 days and still gain weight when I never had a weight problem before.

                        Waiting on finding the most perfect doc thT will help me to get back to normal. I have been through 4 endos and 3 primaries. Sooner rather than later I plan on getting on the right path.

                        Kimberly
                        Online Facilitator
                          Post count: 4290

                          Sending {{{hugs}}} your way, Jules…you are surely due for a run of *good* luck soon!

                          Have you talked to your doc about switching to the non color-coded dose of Synthroid and adjusting the number of tablets you are taking accordingly? I’ve heard of a few patients reacting specifically to the dye that creates the color-coding. Just a thought…

                          Take care!

                          beach45
                            Post count: 178

                            Jules, sorry to hear you going through all this and thanks for sharing.
                            I have no clue now at 11 weeks post RAI if I will be still hyperthyroid like at 7 weeks yet my right hand still shakes although I seem to be gaining weight. The weight issue though started when I was on Methimazole 20 months and through that timeframe even when I went back hyper, I was never able to lose. I think maybe I am having a cross of symptoms, hyper and hypo. The Methimazole seemed to do something to mess up metabolism as I too never had problems with weight control either. I get tired of doctors saying diet and exercise as there is more to it. I’m sitting and waiting to see if I am going eurothyroid or hypothyroid soon. Doctor gives me 6 months and then if not, I get to choose to have another small amount of RAI or TT. Now both endos I saw said if by 3 months you are not looking like you are going in the right direction, I may need more RAI. They said most people go hypothyroid by 3 months post RAI and then it is a slow die off after that 3 months to 3 years after. Around here TSH is the only thing tested for hypo and told if the TSH is good the Frees should be also. I felt best on my journey with Methimazole like you with Frees middle range to higher. No one listened though when I went hypothyroid on that Methimazole and then I could look at food and gain weight. I am hoping that I don’t get to that point again post RAI. I have a lot of allergies and asked if someone is allergic to the Synthroid what to do; endocrinologist said what Kimberly said that this is an alternative without the dye. Well I’m not there yet except. I hear you about the doctors as I’ve had my share of troubles. I don’t want to go there though and trying to be positive that things will turn out well. Good luck to you on your journey.

                            Jules
                              Post count: 85

                              Actually there are the natural Meds I take Armour made from Pig thyroid. Works great for me. It took me going to a primary doc and get away from my endo that I have gone to for over 20 years for my hubs situation. He finally tried rx Armour and I felt better almost instantly. Hives were gone nausea etc. gone. I tried all of the different combs of synthroid name brand and generic dye free etc…

                              As soon as I get the frees up just a bit more I will be extreamly happy.

                              beach45
                                Post count: 178

                                Oh yes; I have heard of the natural thyroid hormone and all except one endocrinologist is for it. The one that was for Armour, etc., has left my area back in 2011. The other endocrinologists say that it is not consistent and the dosages could vary from one batch to another. Plus they are not big on the “T3” thing as they do not want to potentially recreate a hyperthyroid condition. Of course in all my readings there is much controversy on this subject and yes many do feel better yet there may still be the risk of heart or bone problems if the dosing is not done correctly. In that book “The Thyroid Solution” by Ridha Arem, MD, they talk about people feeling better on T3 as far as depression and weight control yet to be very careful because they gave an example of a woman who did become hyperthyroid on an incorrect dosage of the T3 and then she had all kinds of mental issues; once off of it she was fine. I have no clue though what I will do as after almost 3 months post RAI I am not hypothyroid just yet so with all my allergies I hope that I take to Synthroid and covert the T4 correctly to T3 yet I talk to many who do swear by Armour or other natural thyroid hormone; time will tell and I have regular doctors who would give me Armour if I wanted it yet I was also warned.

                                Bobbi
                                  Post count: 1324

                                  My bit of unsolicited advice is this: take the synthroid first and expect it to work. The vast majority of us who had our thyroids removed live well on synthroid type replacement products alone. And these products are much, much safer for the body than adding a jolt of T3. I was one of the people who listened to all the internet mumblings about needing additional T3. And even though I was on a minimal dose of it, for only about a year or two, it eventually — not right away, but eventually — made me thyrotoxic and the blood tests showed nasty elevations of T3. And now there are funky heart waves on EKGs that raise doctor’s eyebrows.

                                  So, it isn’t worth it. Don’t assume your doc is a stick-in-the-mud because he/she doesn’t want to experiment with Armour or Cytomel first. They KNOW that T4 replacement works without the extra jeapardy for the vast majority of patients.

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