Viewing 15 posts - 1 through 15 (of 22 total)
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  • spenanelson
      Post count: 33

      Am I going crazy? I know I am not the only one who struggles with thyroid numbers but why can’t I have a normal and stable sting of blood test? I hear tales of people who have been on the same dose for years, never having any issue or problems. But even though I feel normal my labs are all over the place.

      I will be 42 in less than 8 weeks and have been struggling with Graves and related affects from 2 RAI treatments for over 7 years. I have yet to get a blood test or doctors visit (from my endo, to my general, to my heart specialist and now my RE/fertility specialist) with out them having to “watch” or adjust my meds(only my endo adjust but after a conference with one of my other doctors).

      I have been on every does both generic and name brand. I have changed the time of day that I take it and with what other meds I take it with. But still it is never consistent. They think I may have an issue with absorption and or a sensitivity to the generic formulation that causes my body to become resistant to the dosage.

      In January i was on the 137 dose and my labs came back too low – TSH and fT4, so they changed it to 150. Then in June my labs came back low TSH and normal fT4.

      Now I am trying to do IVF and my blood test came out TSH .113 and fT4 of 1.4. So I was “hyper”? a low TSH and a normal fT4? Now the lowered my synthroid from 150 to 137 and I am 6 weeks out. My RE needs my TSH to be at least .4 but what if my fT4 is much lower? I am on pins and needles waiting for that dreaded phone call. It always seems to be something!!!

      so, is it better to have normal TSH and low fT4? What has the greater affect on the body … the TSH or the fT4?

      I have a bad feeling that my test results will either come back that way, or even worse my TSH will still not be high enough and I have to wait another 6 weeks to begin my shots.

      any words of advice? I just need to be reassured that I am not going to living this horrible roller coaster of blood test the rest of my life.

      Thank you! I can always count on this community to offer the advice and support I need.

      Kimberly
      Online Facilitator
        Post count: 4290

        Hello – Having below normal TSH but normal T3/T4 is referred to as “subclinical hyperthyroidism”.

        The preference is to get TSH back in the normal range (as well as keep T3/T4 in the normal range), as there are concerns that remaining in a subclinical hyperthyroid state over the long term can increase the risk of bone fractures and atrial fibrillation.

        Hopefully, you will get good news with this latest dosage change. If not, I don’t know if you and your doc have tried alternating doses every other day, but some patients find that their “sweet spot” of medication is somewhere in between the commercially available doses.

        Take care!

        Carito71
          Post count: 333

          Hello.

          I completely feel your pain. I saw an RE for 6 months last year before I was told I had GD. The whole process tired me out and I personally think that all the estrogen, progesterone, HCG, etc treatments pushed me over the edge into GD. I was doing fine before all that. I felt healthy but after the 6 months I started to feel tired so I stopped the treatment and decided to wait a while to get my strength back. Little did I know that a few months later I would be told I have GD. Anyway, yes, the lab work can go up and down with all that treatment. It did with me (I’m talking about your hormones other than thyroid hormones). It is frustrating waiting on calls and lab results and then getting a result your were not desiring and having to wait for the next round. I’m sorry to hear that your thyroid #s are also not what you need for your IVF. Our bodies are very complicated. The hormones have to be just right for the IVF to work … actually for any pregnancy to work. Everything is so well timed. Hang in there. Remember to find something at least once a day that helps you feel relaxed and like yourself. I don’t know about you but during the whole RE treatment I felt like a guinea pig and I really needed some time to myself once a day. Hang in there. Please keep us posted. I hope your #s soon get to where they need to be.

          Smiles,
          Caro :)

          spenanelson
            Post count: 33

            Update…

            So after 6 weeks of being at the lower 137 does my numbers came back not so positive.

            My new TSH is 3.38 and my new fT4 is 1.35.

            it just blows my mind how my levels can go from a TSH of .113 to 3.38 in with the such a minimal change in dosage.

            This now means that they will have to come up with another dosage option to get my TSH down to the range around the 1.5 – .4 range and of course put off my IVF cycle for another 6 weeks.

            I can not get a break.

            Carito71
              Post count: 333

              :(

              Sorry to hear this. It can get very frustrating and that is the last thing someone who is trying to conceive needs. I hope they find the right dose soon.

              Caro

              spenanelson
                Post count: 33

                Thanks, I think I also need to get a new Endo. I have what doctors consider to be the best Endo in town and is the hardest one to get into. But I cannot get him or his staff on the phone when I am having any issues. And I know that once he gets my labs from the fertility clinic it will take him a week to respond. I am think about going over to my general physician to get his input on this. maybe he can get my Endo to call him back.

                and isn’t a TSH of 3.3 considered to be in the normal range anyway? Or does that now make me hypo? And could this be more of a pituitary issues? I know that in the past they were worried about that. Then 6 months later my they found out my thyroid was back. I hope it has not come back for a third time. If it has I am donating my body to science. hahaha!

                Carito71
                  Post count: 333

                  I got a new Endo b/c I stopped trusting the first one I had after he wanted to stop the Methimazole cold turkey and not see me again until 8 weeks later.

                  My new Endo has his nurse call me back a day or two later. My labs are sent to me the next day so I get a chance to look at them the day after I get labs. My RE experience was different. His nurse would call me hours after labs but that was b/c in that scenario you need to know #s and what to do right away in case you are ovulating, etc.

                  What does your RE think about the delays from the Endo? It seems to me your RE needs faster results so as not to miss any opportunities to start the IVF.

                  Without a normal range reference it is impossible to know if your TSH of 3.3 is in the normal range. It is different for each lab. You have a lot of other #s to worry about since you are also having RE treatment. With estrogen, progesterone, HCG shots, etc, I’m assuming things can fluctuate even more. It could be pituitary related but you would have to ask your Dr. It most be hard keeping both endocrinologists in synch. I hope it hasn’t come back either. Please don’t donate your body just yet :) Lets have hope that the Endos will get things square out for you.

                  If you feel your general Dr can help you should give it a try. I couldn’t handle the stresses of the RE treatments at the end and I sure could not have handled them along side thyroid treatment. You are a trooper. I wish you the best.

                  Keep us posted.

                  Caro :)

                  spenanelson
                    Post count: 33

                    Good point on the lab ranges. I need to get that from the RE. I do like my RE and the clinic has great success rate for women my age. As for my other fertility number, they were almost perfect and much better than most women my age. I even had more than expected follicles when they did my ultrasound.

                    I know that most RE would discourage me from using my own eggs even but they are very encouraged by all my numbers with the exception of my thyroid.

                    I am going to call my General today and get my RE to fax over all the records. He has been my advocate for the past three years and has been able to really get my health issues all in order. If anything he can help me back away from this cliff I feel I am standing one.

                    As for medical science… the funny thing is that my body has an amazing way of regenerating tissues. The big surprise last year was that I had atropic pancreatic cells in the lining of my stomach. They normally find this in polyps and ulcers. but I had neither. so my Gastroenterologist was completely stumped on what to even do. So I am know as the girl who grows organs. it’s pretty funny. If only I could have a baby.

                    I’ll keep y’all posted!

                    Carito71
                      Post count: 333

                      That is wonderful about your follicles. I couldn’t grow many :( but the ones I grew look good. It seems like you are all set and just waiting on the thyroid stuff. I’m so glad you have a good general Dr. who has helped you before. Go for it … give your general Dr. a call. Funny about the growing of organs. Maybe once you get going with the thyroid situation and get pregnant you can grow a beautiful healthy baby … or two … o three??

                      Alright … we’ll read you more later then.

                      Caro :)

                      Kimberly
                      Online Facilitator
                        Post count: 4290

                        Hello – There is still some controversy over the “normal” range for TSH. Many doctors believe that the upper end should be around 2.5 or 3.0, but many labs are still using outdated ranges.

                        In particular, for pregnancy, a TSH of between 0.5 and 2.5 is recommended. Here’s a bulletin from the GDATF that addresses this issue:

                        (Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

                        http://gdatf.org/about/about-graves-disease/patient-education/graves-disease-and-pregnancy-planning-2010/

                        Hope that you can get things stabilized soon so you can get started with the IVF.

                        spenanelson
                          Post count: 33

                          Kimberly,

                          Thank you for the link and the response. I am still waiting on my Doctor to call me back with next steps. I know that my Endo will take their sweet time to look at the results and get back to be, but at this point I have no idea what they will do to adjust the levels. I am trying not to stress about it. It will happen when it is meant to.

                          As for my RE he likes them in the lower range. And I trust him more than my Endo at this point.

                          I have a lot of questions and until they are answered I know that this journey will continue to full of bumps and road blocks.

                          spenanelson
                            Post count: 33

                            So my lab uses the range for tsh at .4 -4.5

                            So I am in “normal range”.

                            But my RE want it to be in the range of 0.4-2.5. So I’m in normal range for regular management but not for IVF. so my RE is reviewing my numbers to see if he is comfortable with proceeding. But he is on vacation till Monday.

                            I now have so many questions and I’m hoping that next week I can get answers. I have an appointment with my general to go over all my results. But I’m still wondering if it is better to have a high fT4 over a lower TSH when it comes to pregnancy . this has always been my challenge with my labs since the second RAI. It has rarely been on the low end of the labs.

                            more than likely I will have to wait another 6 weeks on the IVF.

                            Thank you for listening and offer such great words of comfort and advice.

                            Carito71
                              Post count: 333

                              Hello again.

                              Yes, 3.3 is within the normal range of 0.4-4.5. I guess your RE wants you more on the high side than the low side of the normal range. Do your Endos agree on the normal range being 0.4-4.5? Or does your RE use a different lab and is not taking into consideration the difference? Just something I personally would like to know if it was me.

                              I hope your RE is comfortable with proceeding but if not don’t feel discouraged. I’m thinking that it will be less stressful and you will have a greater success rate when the #s are where the RE needs them to be. I know how frustrating it can get. I used to get so sad when I was told “not this cycle … we’ll try again next cycle”. Hang in there though. I’m glad you are seeing your general Dr. and getting some of your questions answered. If you have to wait 6 more weeks, use the time to relax a little bit so that you are good and ready for next cycle.

                              Wishing you all the best,
                              Caro :)

                              spenanelson
                                Post count: 33

                                Update…

                                So last week they ran new labs at 7 weeks post new dosage.

                                they came backed mixed again! I just got my results 30 min ago.

                                TSH: 2.1 Range .4-4.5
                                T4 14.7 Range: 4.4-12.4
                                T3 26.5 Range: 20-38.5
                                (forgot to get fT4)

                                So my TSH is in range for IVF – needed to be .4-2.0, but my T4 is high. Is this bad? will I ever have normal labs again? Could birth control pills cause issues? I have even changed how I take my levoxyl again (4am on an empty stomach with out any other meds).

                                And for getting pregnant, is the TSH the number to be concerned with or is there still a greater risk for miscarriage with a high T4?

                                I am hoping to start my shots on Friday and I still waiting on the RE to call with his decision.

                                Kimberly
                                Online Facilitator
                                  Post count: 4290

                                  Hello – Your RE will need to make the call on whether TSH or T4 is the more important measure.

                                  Certain substances, such as birth control pills, can “bind” thyroid hormone, thus making it unavailable for the body’s use. I’ve heard of patients who went off of birth control pills and subsequently required adjustments in their dose of medication. This type of change wouldn’t show up in a total T4 test, but should be picked up in a Free T4 test.

                                  Hope that you get good news!

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