Hi everybody I'd like some advice from anyone who might know whats going on with my hypothyroidism. I have been a member on here for about 18 months and have read many letters and answers and advice members have given to other people, and have found it very helpful, now I think I need advice myself, here is my situation.
I have been having TSH tests for various reasons since 2002 and of course my results have always been normal. However in July 2016 my TSH level was 6.27 range (0.4 - 5.00) this came back as satisfactory. The nurse who had taken my blood had just been on a course about hypothyroidism and saw that my TSH had been rising steadily over time especially over the last few years and she persuaded the doctor to start me on a course of levothyroxine, I started on 25mcg and although this is a small amount the initial impact was enormous, I felt my thick black brain fog lifting and it made me feel fantastic and alive. This feeling sadly subsided but I didn't go back entirely into the gloom. Since that time I have read that most people feel better when FT4 & FT3 are in the top quarter of the range and TSH is low. I asked my doctor of we could try and achieve this and she agreed. She said she will increase my levothyroxine by 25 mcg every 8 weeks after a blood test until I get the results I wanted. This took a very long time, I was on 50mcg on 19.6.17 and my FT4 was 10.7 (9.0 - 19.0) and my FT3 was 3.4 (2.60 - 5.70) in September my FT4 was 11.1 and FT3 2.9 and TSH 0.95 November FT4 11.7 FT3 3.24 TSH 1.39 so my FT3 & FT4 were creeping up even if it was very slowly, by this time I was on 125 levothyroxine and was feeling better and was thinking its working, unfortunately my January results flagged up that my TSH was now too low 0.25 FT4 was 12.3 and FT3 3.88 the lab questioned was I over medicated and the doctor told me she had to reduce my levothyroxine she reduced it to 112.5 now my latest results on the 17th of April are TSH 0.54 FT4 12.9 and FT3 2.3 the report points out that the FT3 range has changed from (2.60 - 5.70) to (2.89 - 4.88) either way my FT3 is now out of range and low. I'm not sure what this means and what I should do next. I know you usually ask about B12 and I have had that tested as well in June 17 it was 151 (150 -650) November 17 it was 325 and April 18 it was 315. I am taking cyanocobalamin 100 mcg each day. Sorry this is so lengthy I'm just trying to give as much info as i can. So there you have it any advice will be much appreciated.
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The problem here is not your B12, it's your doctor! She should not be dosing by the TSH. The TSH is irrelevant when you are on thyroid hormone replacement, unless it goes high. It doesn't matter how low it goes. And, no matter what the lab says - they are not thyroid experts - a low TSH does not, on its own, mean that you are over-medicated. If that's what your doctor believe, then she is incapable of making you well.
You are only over-medicated if your FT3 is over-range. Yours is under-range, meaning that you are very hypo. So, hardly surprising that you don't feel well. I don't know how you are going to get that through to your doctor, but if you can't, then you will either have to find another doctor that knows what s/he's doing, or self-treat.
It's not uncommon to be ineffectively treated for hypo. So many of us have been there and many still are. I was overmedicated with t4 for years by a very high levo dose but not coverting and it wasn't changed til I was in the hospital diagnosed with atrial fibrillation. I recently (early April) found a new endo who 'gets it' and found I wasn't converting well. So he did a thorough workup and added T3 Even though it is a small starting dose it will probably be raised at my next appt in early June. Though doses are not yet optimal I already feel better from the horrible fatigue and crying jags etc. I'm very hopeful. So stick with trying to find a knowledgeable and caring doc. They are out there and don't put up with those who can't or won't help you feel well again. Worth the search and sometimes you have to kiss a lot of frogs before you find a prince. When the connection was made between my a-fib diagnosis and my thyroid situation my electrophysiologist called in an endo who solved the problem. At the time I could have had him as my endo and probably saved myself a lot of grief but my PCP/GP said she could handle my thyroid issues and I (foolishly) chose to do this. My bigger mistake was staying with her for so long after I began to learn what questions to ask and realized I wasn't getting better but worse. One of the things that will help you is learning what good thyroid care involves and you will learn it here. Then don't be afraid to let go of ineffective caregivers. One thing that helps is browsing around the site and reading other posts even older ones. Pretty soon I believe you will know more about good thyroid treatment than many docs. Stay with your search. BTW the new endo that my cardiac doc referred me to and is now my new endo is the same one that diagnosed the problem in the beginning. Good luck and take care. Feeling so bad from thyroid sx can be worse than many other healthcare problems. xx irina 🐱
Thanks for the support Irina it means a lot. I’m going to see what this new doctor says and if he doesn’t give the answers I want I’m going to ask to be referred to an endo.
Were all your thyroid tests done under the same circumstances, we always advise here
° Earliest appointment of the monring
° Fast overnight - ie you can have your evening meal as normal but delay breakfast until after the blood draw. You can drink water.
° If you take your Levo in the morning then delay until after the blood draw. Levo peaks in the blood up to 6 hours after taking it, if you test after taking Levo it reflects that and not what normally circulates in the blood.
Have you had your thyroid antibodies tested?
When your B12 was 151 you really should have been tested for B12 deficiency/pernicious anaemia.
Cyanocobalamin is the wrong form of B12, we should take sublingual methylcobalamin
Yes all tests were done under the same circumstances following the instructions on here not had antibodies tested will request that at next appointment. Had folate it was 8.6 (3.1 - 19.9) in July 17 and 6.4 in April 18 ferritin was 285 (20 - 300) in July 17. I don’t know if that’s good or bad and I’ve not had Vit D tested at all. As my B12 is now 315 do you think there’s any point now requesting a test for pernicious anaemia. Thanks for helping with this by the way 👍
I will discuss B12 with doc next time, at the time of my ferritin test I ate a lot of spinach I think that’s high in iron. And I’ll ask for a vit D test at the docs as well. Thanks for your advice I’ll be back with my results when I get them.
Yes I should be free of symptoms I didn’t bother to list them as I have nearly all of them 😂 my latest being piling on weight and breathlessness 🙄 I’m going to the docs next week. Seeing a different doctor as mine has left.
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