No FT3 tests again any lobbying can be done by Thryoid UK?

Hi I wondered if, since ThyroidUK now has many more members than the BTF they might speak up to the NHS on behalf of patients who are taking some kind of T3 containing med about the labs taking it upon themselves to not do the test even when Dr asks for it? I do not relish having the needle stuck into me extra times especially since I suffer from Addison's syndrome, I find it extra stressful. The Dr did put on that I needed it testing and that I was on T3 containing meds.

Can you think of anything can be done to alter this common practice? She says the surgery will have paid for it since it was ordered.


11 Replies

  • This is something that Lyn raised at the Scottish Parliament round-table discussion.

    Unfortunately, it is not clear who the labs have to answer to (if anyone). There is also no consistency across the country in this matter.

    Obviously, this is something that Thyroid UK believes should change, however, despite having more members that the BTF, we have far less staff!

    We also have a strategic plan that we are working to and do not have the time or funds to step outside of that at this current time.


  • Sorry .. My previous post was meant to be in reply to Ladydawny. The labs usually work within a Hospital Trust and will be given a budget to work with, they then decide how best to juggle their money, so it looks like cutting down on some tests is one way they balance their budgets! I do think that although this has been raised at the Scottish Parliament it does need highlighting again as it's now getting to be the norm- even T4 is not being tested in many labs around the Country it's only TSH. I think that GP's need to be contacting their Hospital Trusts to complain that tests that they deem important enough to request are being ignored. Maybe Thyroid UK could flag this up to GP's. I understand it takes a lot of admin resources but at least me need to give it some thought and look at how we the members could help out

  • Part of the problem is that there is no guarantee that anything Thyroid UK produces for GPs would be taken seriously. To them, we are just yet another thyroid support group... This is something that we are working towards changing...

    I am not saying that we do not think this is important, just that we are not necessarily in the right place at the moment to do anything about it...

    I will show Lyn this thread for her thoughts...



  • I agree with your comments totally- thyroid patients are getting a raw deal anyway and now this- even if someone is not taking T3 it is important to know what FT3 levels are like on T4 replacement esp if the person feels unwell.

  • I agree wholeheartedly. It was only after years of T4 only and feeling ill but always "normal" on the TSH test, that I asked GP to test T3. It came back under range. Probably had been for years. I now take T4/3 combo. (Still trying to get that right however!)

  • Just wondering how the BTF manages to get the staff, is it volunteer members? Is it funding from the Society of Endocrinology and their Pharma sponsors? If not the latter, could Thyroid UK do the same as the BTF? Just a thought for the future, very little you can do without the manpower I can understand that.

    hugs xx

  • I would be very unhappy to find a patient advocate support forum sponsored by big pharma or the Soc of Endocrinologists. I believe BTF lack credibility because of this and act like lackeys in case they lose their funding.

  • I have just read the answer from The BTF to the Scottish Parliament. It makes for very dismal reading. Amongst other things:

    "1. We ask for the inclusion of tests for Free T3 (FT3) and Reverse T3 (RT3)

    thyroid hormones, as these are the strongest indicators of cellular thyroid


    The BTF informs enquirers that these tests are not useful in the diagnosis of

    hypothyroidism. Our medical advisors inform us there is no reliable scientific

    evidence to the contrary. "

    There are lots more like that :

  • Oh no, in no way suggesting any sponsorship like the BTF have.

    With regards to their Scottish Parliament response, not surprised as one of their 'experts' is Dr Williams who cherry picked his studies at the meeting. He specializes mostly in thyroid activity in bone. Why oh why when they have a a lot of knowledge about a tiny area of a subject do they get called on to say that they know everything that is necessary to diagnose and treat us? I hate the sham of so called evidence based medicine they try to put across nowadays, waste of time.

  • We have responded to the Parliament about the October Roundtable meeting and you can see it on this link if you sroll down three items as it's not published on the parliament website yet.

    We shall be responding to the BTF letter in detail when they furnish us with the name of who wrote it, as other organisisations have done ;-)

  • Great reply, just hope the parliament are not blinded by the so called 'experts', expert status'. Also it is telling about the efficiency (not) of the BTF that their letter isn't signed by the person who wrote it. They seem to be there as more of a mouthpiece for 'them' than for we who are suffering from the illness.

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