Thyroid Q and A or Running Hot and Cold

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I'm back! (Read 322 times)

    and happy to report that the trip was well worth it Smile I was very happy with the endocrinologist that I saw in LA. Finally, answers - without me saying anything about my "theories", he validated everything I have been saying for the last 2 years. I'm special and apparently my body is working in a very unique way. He is the first doctor I have been to who has said that the thyroid is a very complex organ, and that getting people optimized is very tricky business and that the tests that are currently available are not always the best way to determine this. He considers himself a mainstream endocrinologist and goes with TSH and FT4 as the first line standard, but he doesn't stop there if symptoms continue to be a problem. He ran a 3 part thyroid function study that I had never heard of before, and bottom line, my brain is taking up large amounts of thyroid hormone, leaving the rest of my body deficient - so yes, I have been hypothyroid for most of the last 2+ years. He also agreed that my losing weight, gaining muscle, and bumping up my training caused me to out pace my thyroid dose. Since the level of T4 in your brain is what determines your TSH - my TSH will always be very suppressed and not a reliable indicator of being hyperthyroid or not. The same goes for the FT4 levels - he said that in my unique case, what we need to track is my FT3 levels - let me tell you, I was rendered speechless - you have no idea how unusual that is for me This is exactly what I suggested to my endo here that we try as an experiment. It also means, that I will require very frequent monitoring of my levels and clinical status, and that he does not expect my dose to remain static, especially given my activity levels. He did not forsee any real problems with this, as he feels that I have a good knowledge base, am well-versed in the complications of excess thyroid and am reasonable in my plan for increasing doses. He approved a dose increase and wants to see only my FT3 levels in 2 months. He also suggested that living in Alaska for so long could mean that I had a selenium defiency - which apparently is critical to thyroid hormone function, and that I need to get my ferritin levels up. It could be that once those issues are resolved, I'll be able to back down on my dose. Of course, he can't monitor me from a distance, but he is willing to talk to my docs here and explain his rational. I just got a call form my endo's office saying that she had time to see me on Monday. So, it will be interesting to see how this will go. The last thing she said to me was that she was no longer going to run FT3 tests and only regulate my dose with TSH and FT4. Perhaps given new information, she will be open to this new plan, particularly since the LA doc is willing to be backup and available to answer questions that might arise. If not, then at least I will have closure with her. It still means finding another doc to monitor and order meds here, and I'm not sure how comfortable my PCP will be with that given the unusual circumstances. She is out of town, so I won't be able to discuss it with her for a few weeks. As it stands now, my levels were checked again in LA and my FT3 had dropped 20 points from the January labs and I am feeling the difference. Tired, but determined to get back to my strength training and running again. Ah, but at least I know I have someone on my side, and don't have to fear anymore cutbacks on my doses for right now. I'm also going to start looking into more of the nutritional support aspects for thyroid. Thanks again for your support and kind wishes! Smile Cheryl

    Life is not measured by the number of breaths we take, but by the number of moments that take our breath away...(unkown)




    Go With The Flow
    Thyroid Support Group

      Wow! I'm SO happy for you that you finally got to the bottom of what's going on! I think that if your current endo has any common sense, she'll go along with the plan and appreciate being able to coordinate management of your case with a specialist...in an ideal worldSmile I look forward to hearing the outcome after Monday's appointment. Good luck!

      Use your momentum...keep going.  You know you can make it.


      Driver, Runner, Bestie

        That is great Cheryl. Just in time for spring training. Please keep us in the loop about any nutritional information you learn to work with the thyroid.
          Hmmmm....saw my endo. I had the LA endo fax her a copy of his report. Her response? "I don't buy that". Then she tells me that she spoke to another expert about my case this morning - he does some kind of thyroid gene research, and apparently he does not agree with the LA doc, but did suggest trying Cytomel. So, now 2 experts, both involved with research with opposing opinions. One says I'm overmedicated, one says I'm not. I said, I don't care what my labs are or what my dose is - I just want to be normal again and in 26 months, I have only felt well for about 5 months. So this is where we stand - we will continue to run the FT3 labs (which she has no faith in), and I told her that I had increased my dose to 125 mcg 4x/wk with 112 mcg 3x/week. She wanted to recheck labs in 4 weeks, but I said I wanted to wait the full 6 weeks to make sure I am at a stable level, but that I would let her know if I felt I was going hyper. In the meantime, I will try supplementing with selenium and ferritin and we will see what happens. I have appointments booked every 2 month through October, and as long as I get treated by symptoms, I guess I will continue on with her. In the meantime, she still wants an answer for the low TSH( still.03) - she is now suspecting that I have active thyroid tissue left over from my surgery. So I will have an ultrasound to check for thyroid tissue. She is also contemplating an I-131 test - (radioactive iodine), but I won't have to go off my synthroid for it. When I asked why she would want to do that test, she said if there was active thyroid tissue, she might want to give me an ablative dose of radioactive iodine to kill off the tissue that "might" be secreting excess hormone and that there was a possibility that my dosing might be easier as a result. I already told her "no,thanks". I'm betting there will be no tissue found in the ultrasound.

          Life is not measured by the number of breaths we take, but by the number of moments that take our breath away...(unkown)




          Go With The Flow
          Thyroid Support Group

            ugh Cheryl... that stinks that she doesn't want to follow the advice of the LA doc. The idea of radiating leftover tissue seems not too smart, so hopefully there won't be any so you can avoid her pushing that. I wish your treatment process could be smoother, but at least she is willing to treat symptoms for the time being.


            Driver, Runner, Bestie

              Cheryl: Are you locked into this doctor by a health care plan or limited resources in Alaska? Maybe its time to make a change. Radiation seems to be extreme.
                It's my best option here in town - but no worries, I have no intention of having the I-131 test done - no point since even if it did turn up positive, I would not act on it. As long as she is willing to monitor me through these dose adjustments, I think this last dose increase is going to do the trick for me - at least for now. She seems to need reassurance that she is "doing no harm" - I think the report from the LA doc, and what ever the ultrasound shows will go along way towards this. CYA??? Wink Shaunna: it's a big deal that she is still treating me - I half expected her to say that she wouldn't after I told her I increased my dose - I know she is not in favor of it. It's all going to come down to what my labs are in 6 weeks - if my free's are still in the normal range - and I am feeling good, I don't think there will be any question about cutting my dose.

                Life is not measured by the number of breaths we take, but by the number of moments that take our breath away...(unkown)




                Go With The Flow
                Thyroid Support Group

                  Had my ultrasound this morning....no thyroid tissue found. That's the last test I'm doing other than my routine thyroid labs. I consider this good news. When 2 experts disagree on the cause of my low TSH while I remain without any evidence of clinical hyperthyroidism, it only goes to prove that more research is needed, and we just don't have all the answers yet. Fingers crossed, but I really do think I'm starting to feel better Smile

                  Life is not measured by the number of breaths we take, but by the number of moments that take our breath away...(unkown)




                  Go With The Flow
                  Thyroid Support Group


                  Driver, Runner, Bestie

                    Cheryl: Good news about the tissue. I hope the medication adjustment works. And I am glad you are feeling better for now.
                      I'm glad your ultrasound was negative and that you're already feeling better. Coming out on the other side of all these stressful appointments helps, no doubt. I hope that over the next 6 weeks you show an improvement in response to the increased dosage and that your endo bends your way a bit more. Keeping my fingers crossedSmile

                      Use your momentum...keep going.  You know you can make it.