Hi, I've been on thyroxine for 12 months now (currently on 100mg) and had a blood test this morning because I've been feeling very cold lately.
Anyway, when I said can you make sure they test for T4 not just TSH the nurse said the lab have stopped testing T4, WTF? How can they do this?
I want to send a letter to the GP practice to complain, is this unreasonable? I know they often 'forget' to test things that have been requested, but to just say an outright 'we no longer test for it' is outrageous! My reducing T4 levels are what got my diagnosis in the first place (with antibodies), we all know we can't look at TSH alone, so why don't they?
I'm in the Portsmouth area and wondering if anyone else has this issue too?
Sorry for the rant, thank you in advance for any responses from a long time lurker :o)
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josnaps
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So this issue appears to be that your nurse is not understanding the real state. The lab might have said that they will not routinely perform FT4 tests for GPs. This is pretty much what happens across the country. If TSH is in range, then FT4 is very often not done - even if requested. (At the same time, labs sometimes do FT4 when TSH is out of range even if the doctor did not request it.)
If I wanted to complain, it would be through through the hospital complaints procedures (e.g. PALS) rather than a single GP surgery - who might be ignorant of the real situation and pretty much unable to help. (Though this itself is not good enough, it is not the real problem.)
I am perfectly aware that this is not a satisfactory state of affairs - and complaints about it are required. So go ahead - do your best!
I have it in writing from our lab in Coventry that provided TSH is within range they will not check FT4, because it is not necessary. Also they told me there was no need to check FT3, which is 'of little diagnostic value'.
They have lots of little internal rules as well. For example they will only check Vitamin D for a GP annually because it is 'a very safe supplement' and they will only check ferritin once every three months.
They seem to think it's OK to over-ride a GP or consultant's clinical judgement.
I have had a lively correspondence with them since I complained.
I think it's down to money, but they won't admit it.
Hi josnaps - I too live in Portsmouth and realised yesterday that my January thyroid check was for TSH only and not T4. I called the GP this morning to ask why. He explained: if already taking Levothyroxine, TSH level alone is a fairly good indicator of whether you are getting enough replacement T4. If TSH levels are a cause for the concern (I believe he said less than 0.1 or above ? can't remember) then they would also test for T4 but at the moment only Endocrinologists, not GPs, can require direct T4 testing due to a national shortage of the necessary lab reagent! Apparently this situation was estimated to last about 6 months. The GP couldn't remember exactly when they were first notified about this but guessed it would probably go back to standard T4 testing in about June. I suggest you call your GP and discuss, if you are really concerned about your other symptoms. I believe the situation is: if you're not getting enough T4 then your TSH would be elevated. What was is TSH level? How does it compare to your last test results? Is it going up?
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