In my previous (and first) post I shared how there was no consistency from one review to another, in terms of which blood tests were repeated.
Today I had my "repeat" thyroid "tests" (quoting words used by the GP at the time), and having heard your experiences, I was not surprised when the only thing tested was TSH.🙄 The phlebotomist reminded me of how my FT4 was "normal" in January (FT4 11.8 pmol/L [9 - 19]).
So while I await this result, I thought I would consult and research the forum for frequency of blood tests, whether that is FT4, FT3, or any other, for someone who has just started treatment on Levo, following antibodies going through the roof, TSH going up to 12.7 miu/L [0.4 - 4.9]) and is seeing minimum improvements. I appreciate this will take time.
My "shopping list" includes the following with the last time I had it tested, values and ranges:
FT4 11.8 pmol/L [9 - 19] - Jan 23
FT3 3.92 pmol/L [3.1 - 6.8] - Feb 23
Vit B12 549 ng/L [187.0 - 883.0] - Jan 23 (serum level and not active?)
Vit D 97.8 nmol/L [> 49.9] - Oct 22 (finished supplement in November)
HbA1c 37 mmol/mol [20.0 - 41.0] - Oct 22
Ferritin 141 ng/mL [15.0 - 204.0] - Aug 21 *later edit, after it was pointed out I missed it.
I am aware that the lab will specify a certain "validity" for each type of blood test and I have no desire to do any more frequently than required. If I recall correctly, for the purpose of dose increase, thyroid bloods were recommended roughly every 2months or so.
Could you please let me know if you see anything key that I missed to include and for those above, what is the recommended frequency? Or what is a minimum/year? I imagine this would be dependent of concerns investigated, but at the moment, apart from thyroid specific values, I cannot say I am worried about anything, apart from wanting to keep an eye on cholesterol and the vitamins/minerals recommended.
I must mention that I have not started any supplement as I wanted to see how it goes with the treatment and have some sort of baseline. My intention would be to go with D+K2, B12 and Mg, depending on the conversation with the GP and any other blood tests. Also, I very much doubt she would agree to re-test any of the above.
Whilst adjusting dose the frequency of tests would be every 6-8 weeks. Always test at 9am or close as that is when TSH is highest. Take Levo that day AFTER the test. Pause any biotin containing supplements 4-7 days before the test.
You are missing ferritin from your list.
I see you previously were folate deficient and your numbers were good following taking folic acid. You may well find that you level plummets again now you have finished the course of treatment. people here need to supplement continuously to keep levels optimal.
Thank you Jaydee1507, I did forget to add Ferritin to the post indeed, though it was on my list. I am aware of the above, the question was regarding frequency of testing of all those vitamins and minerals. Apologies if I was not clear.Thank you for your help
Vitamins and minerals should be tested around 3 months after starting supplements to see if you are taking enough. Once you are taking the right dose then annually is enough, other than D3 that should be tested twice a year.
(whatever the phlebotomist thinks , clearly your pituitary didn't think fT4 11.8 was 'normal/ enough' for you , as it had sent out loads of TSH (12.7)to ask the thyroid to try it's hardest to make more ... and it had been asking for more since 2021 !) .
This one is a list of links recommending GP's keep TSH below 2/2.5 in patients on levo:
(Useful of GP's say they don't need to adjust dose any further once TSH is anywhere within range )
The absolute minimum you should expect from the NHS is a repeat TSH at least 6-8 weeks (ish) after any dose change, until the TSH has been in range twice in succession.. ( that will be considered 'stable') .. and then they should offer annual TSH testing to monitor .(hopefully they do fT4 as well , but some areas just do TSH now .. )
They should also be willing to re-test TSH at other times eg. if you go back with worsening hypothyroid symptoms , or symptoms that could be due to overmedication etc .. as long as it is more than 3 months since the last 'in range' TSH test . (lab may have a policy limitation to refuse a repeat within 3 months of an in-range TSH result)
The NHS may not automatically do any more than that for you unless you push them to get your treatment 'optimal' , but it depends on the doctor ... some are better than others ,.. however some seem to need reminding that they need to do more than just 'getting the TSH in range' and that the object is to get you feeling better and staying that way.... which is where those lower TSH recommendations for GP's will come in handy .
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