Viewing 10 posts - 1 through 10 (of 10 total)
  • Author
    Posts
  • TedyLeo
      Post count: 5

      Good morning,

      In 2006 I was diagnosed with Graves disease and shortly after that did the radioactive iodine albation.

      My lab results for my T4 (high) and TSH (low) have always been slightly out of suggested lab range when I have felt the best.

      My doctor does not have a problem with having me running abit “Hyper” to feel better right now though he is concerned about the long term effects of doing this.

      He has thought about referring me back to the Endo who treated my Graves but is not sure of the value of this. The Endos in my part of the country are in high demand and it could be up to a year to see one.

      Basically all we are wondering is if anyone has any experience of being allowed to run “hyper” after RAI? and if so does any one know if this is an acceptable treatment?

      My basic research does show that it is not unusual for Graves patients who have had RAI to require more synthroid to feel “normal” but are wondering also if this is common?

      Any and all input would be appreciated.

      Thanks!

      Kimberly
      Online Facilitator
        Post count: 4288

        Hello – Hopefully, you will get some responses from others who have had RAI, but just a quick note that hypER is associated with *low* TSH and *high* T4. HypO is the opposite.

        I know the preference is certainly to get patients within the “normal” ranges, but that would be a call for you and your doctor to make if the only place you feel well is slightly outside the “normal” ranges.

        Take care!

        TedyLeo
          Post count: 5

          Sorry I mixed the T4 and TSH numbers when typing. I have now corrected it so not to confuse others.

          Thanks Kim for noticing this error and correcting it!:)

          I am just looking for anyone’s experience who might be running “hyper” by lab reports and if so for how long?

          Looking forward for others to share their stories.

          adenure
            Post count: 491

            Hi,

            My story doesn’t quite fit along the lines of your question. I had a thyroidectomy 8 weeks ago and am on 112 mcg. of Synthroid- trying to get the dose right, doing labs every 6 weeks.

            I have read though that people who have had a thyroidectomy due to cancer are often given enough hormone replacement to keep their TSH pretty low- almost around 0- to avoid having any cancer grow back. I think it’s referred to as TSH suppression. I am not a doctor and am in no way suggesting you keep your TSH that low, but I just remember reading about it quite a bit. So, I suppose that there are people out there who have their TSH suppressed very low for medical reasons through out their lives. Maybe it’s something to ask your doctor about? Just a thought. If it is a risk for osteoporosis or heart problems though, I wouldn’t risk it.

            Alexis

            beach45
              Post count: 178

              Hello,

              Like Alexis said I know that they keep TSH suppressed for the cancer patients.

              I do know from my own endocrinologist who am I told is one of the best in the state I live for treating thyroid problems and also a professor at a Medical University and I would imagine is up on the latest medical information, that for myself, being over 50, that TSH is best between 2-3. Yet I have spoken to another endocrinologist, a thyroid specialist online and a couple of other medical professionals (MDs also) and they say regardless of my age TSH should be at least 1. The reason why my endocrinologist says TSH between 2-3 is due to preventing heart problems such as afib and bone loss, especially in the case of women who may have or are going through (like myself) menopause. He got upset when I said my internist suggested keeping my TSH at 1! Do I feel best TSH 2-3. From my past records not at all and I am talking way before Graves issues started. My best was TSH under 2 and I have lab reports from the past showing this. I keep all my lab records and a chart of where my TSH and FT3 and FT4 has been since Graves treatment. I suspect your TSH is low as you mentioned TSH high yet I think you meant the opposite. Yes I also heard that for some Graves patients that more Synthroid is needed yet not all in my discussions with patients post RAI. I have a friend who had RAI 7 years ago and constant changes of Synthroid year after year and even on a very high dosage, still is what you could consider hypothyroid by what AACE suggests as her TSH is over 3.0.
              Truthfully, I am getting all kinds of different information and now 14 weeks post RAI I am still not on Synthroid and I am gaining more weight and believe I may be getting close yet I am concerned there is no real consistency and see studies now that lower TSH does not necessarily mean heart or bone issues yet I also need to listen to my doctor as he is the MD not I! Yet I also want to have a good quality of life and feel my best. I’m not there yet though.
              And hopefully I will feel better once on Synthroid and per doctor recommendation what I consider t0o high a TSH because for 26 months since this started (and on MMI 20 months of that time) I have not felt well and just keep gaining weight!
              Good luck with all this!

              Beach

              Methimazole 20 months no remission
              RAI May 3, 2012 (waiting to get on T4)
              Not an MD just opinions formed from reading medical journal articles and speaking to many physicians, endocrinologists included.

              TedyLeo
                Post count: 5

                Thanks everyone for the input and sharing of your experience.

                My Dr. does not have a problem with keeping the TSH low, as he says it is not “too low” but is slightly out of lab ranges as is the T4 slightly above range. Keeping it at the range it is right now I have no symptoms of hyper or hypo. When he changes the synthroid dosage down to the next level I have full blown hypo issues.

                So for the next six months we are keeping the synthroid dosage where it is though he is wondering if I should be referred back to my endo for consultation on if it is acceptable to continue on after that. As it takes up to a year to get into see the endo, as I really don’t have an issues it wouldn’t be urgent, I don’t want him to put me hypo during this time before we get the blessing from the endo to continue on with me being “slightly hyper” long term.

                I have had all the heart testing and bone test done and everything is fine.

                From my readings I do see that it is not unusual after you have been treated with RAI to require a synthroid dosage that makes you slightly hyper according to the lab reports to feel “normal”.

                I am just wondering is there anyone else out there who requires to be kept slightly hyper to be symptom free and if so have they been doing it long term?

                Thanks!

                TedyLeo
                  Post count: 5

                  Thank you Alexis for your response.

                  I am actually working with my Dr. and see him on an ongoing basis for other issues (kidney donation to my brother requires that I see him on a regular basis).

                  The conflict has always been getting the synthroid dosage correct. I have yet to go six months without it being changed. Others that I speak to go on one dosage and are on the same dosage most of their life.

                  Good luck with your recovery!

                  TedyLeo
                    Post count: 5

                    Thank you Beach for your response and comments.

                    It did take me four months to go hypo after RAI so hopefully you will shortly and they will get you on synthroid to make you feel better.

                    As for weight issues, don’t even start me on that story. LOL! I was told by my endo that I would probably end up about 20-30 lbs overweight for the rest of my life. That shocked me and it hasn’t been true though I have to exercise and watch my diet very diligently to ensure it doesn’t happen.

                    Best of luck on your recovery!

                    beach45
                      Post count: 178

                      Your welcome TedyLeo! I am glad to hear you had success at four months and got on Synthroid. I have heard that some on Synthroid do need more to feel better yet mostly keeping the TSH 1 although guidelines suggest 0.3-3.0. I think best what doctor and patient can work out together with thyroid levels and Snythroid dosing where the patient has the best quality of life yet I am not an MD.

                      My endocrinologist told me maybe a 10 pound weight gain. Why some people struggle with more and some do not I do not know as is it the amount of Thyroid hormone (Snythroid), adding T3 or just some people are not as fortunate and the weight hangs around; that is too with diligent diet and exercise. I just know I am very uncomfortable and on a healthy diet and exercise plan yet hoping maybe with some T4, that I will get there slowly back to a more normal weight for me.

                      Thanks for sharing and best of luck in your journey!…beach

                      elf
                        Post count: 181

                        Yes, my TSH has been low (quite low actually) for a while now. Free Ts are within the ranges, but pushing on the higher end. I also wondered about the long-term effects – but my personal feeling is that if anything, I need more Synthroid, not less. I, too, wondered about the usefulness of an appointment with an Endo – since he/she would be pushing for less Synthroid, trying to fit my labs into the number box. I think my personal feeling of well-being overrides the numbers. That’s how I calm myself anyway!!

                      Viewing 10 posts - 1 through 10 (of 10 total)
                      • You must be logged in to reply to this topic.