So what seems to the usual path of feeling awful (fatigue, brain fog, no oomph) and trying to get a GP to do extra tests because TSH is "normal" led me in 2015 to get my blood work done privately. I should add that I had been diagnosed as hypothyroid as far back as 1996.
My private results:
Total Thyroxine (T4) 72 (range 59 -154)
TSH. 1.83 (range 0.4 - 4.5)
Free Thyroxine 16.3 (range 10 - 24)
Free T3. 3.8 (range 4 - 8.3)
Thyroglobulin antibody. 28.7 (range 0-115 (negative))
Thyroid Peroxidase Antibodies 65.5 (range 0-34)
The GP's NHS results:
Free T4 16.5 (range 9 - 24)
TSH 1.43 (range 0.34 - 5.4)
It was interesting to note that at least the meagre NHS results were similar values!
I gave my private results to my GP with what I thought was blindingly obvious Hashimoto's because of the TPO result and she said that because the NHS TSH value was "within range" there was no need to change treatment. I was on 125mg of Levothyroxine.
I decided I had to do something (anything!) and found a source of T3 (Tiromel) over the internet. I gradually increased to 3 x 25mg which definitely made a noticeable difference. My family said I seemed more "with it". I ended up taking 2.5 x 25mg + my 125mg of Levothyroxine and felt more energetic and sharper than I had in a long time. It took a year and nicely I also lost weight. I did of course change my GP.
I have since moved and my new GP wants to tinker with the settings. He knows I self medicate with T3 and after the first tests with him I agreed about lowering my Levothyroxine to 100mg (can't lay my hands on those results). I thought he made a good point about the risks of over medicating etc. Now I believe I have been patronised with "me doctor, you listen, you no ask questions" attitude. He insists my bloods are done again after 6-8 weeks.
The results from late October are:
TSH <0.010 (range 0.20 - 4.50)
Free T4. 11 ( range 9-21)
He's freaking and lowers my NHS Levothyroxine prescription to 75mg. I'm still taking my 2.5 x 25mg Tiromel. This is now worrying me as I don't feel as sparky as I used to and my family say I appear rather scatter brained. I go back and see the GP and tell him that I want to go back to taking 100mg of Levothyroxine as I don't feel as good as I did and he said no. To his slight credit he ordered up more blood tests to investigate and these were done in December. I haven't been able to get my copy yet but I was told over the phone:
T3 3.1 (no idea of range, just told it's high).
First time I'd EVER had the NHS do a T3 test.
vitamin D was low (prescription provided) and iron was high. The iron was re-tested and now is ok (such technical terms) and another set of TSH was done too.
Btw, I am trying to get copies of these but I have to fill out a GDPR form for action by the practice manager and they won't send via email!
So, and sorry this is long winded, I was told that the GP wants to discuss the results as my levels suggest the dosages need to be lowered. I'm assuming he will now say to put me on 50mg.
Now I come to what's (mainly) bothering me about all this. I have been feeling great on a combination of T4 and T3 (125mg and 62.5mg respectively) and want to know how or what treatment and monitoring should be done for Hashimoto's? I am alarmed that my dosage is being altered on just TSH and no TPO and until I read this forum I had been told that GPs couldn't do TPO. I have no confidence that my treatment is heading in the right direction.
I'd welcome advice and feedback. Thank you
[My advice to myself is find a good private endocrinologist, but in the meantime...]