I had a GP appointment today, and he confirmed that the labs are no longer testing T4. He was not happy with this, as he said "we do not get a good picture of what is going on" I replied that it must be a bit like only taking one reading on a blood pressure, as the main diagnostic of this is the gap between the two readings. He agreed.
So, why is this happening? Does it really cost that much to test for T4? Who made this decision, and where was it published? The practice nurse did not know.
More importantly, what can we do about it? I cannot afford private tests, but is this a sign of things to come, to drive us into paying for basic needs?
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serenfach
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I think this sort of thing is only going to get worse - there are more "high profile" illness's that need funding before thyroid illness. First they stopped testing FT3 and now its FT4 and as your doctors said, how can they make an informed decision with half the information missing. The NHS is flat broke (to busy paying extortionate price for drugs and over inflated wages for consultants) and its going to be joe public that are going to bare the brunt. Getting really worrying isn't it.
The endocrinologists and biochemists have ganged together and written 'guidelines' which basically say just do the TSH for GPs and the full tests for 'us' (endos.). I had this problem. You have to find out where the tests are done (local hospital?) and then make a formal complaint to them. If you do not complain nothing will improve. This document has a good overview "patient.co.uk/doctor/thyroi... . Note the bit on " so an additional request of FT3/FT4 should be considered where there is persistent fatigue with a normal TSH".
My GP specifically requested T3 & T4 at my insistence and they still didn't do it! my TSH was 3.3 & I feel dreadful. I am going to have it done privately just to confirm I am not going mad!
I could not get the link to work, jimh, but did find this from the Royal Surgery bods - most of the report is rubbish, but even they say "The only validated method of testing thyroid function is on blood, which must include serum TSH and a measure of free thyroxine (T4)."
I live in Hywell Dda Health Trust region (West Wales) and have always believed they do the tests for all the local GPs. I will investigate, I am already waiting for a reply from The Welsh Health Minister after I asked the MP formally about the cost of T3! The letter to the Minister was sent on the 17th December, so I should have a reply by the spring!
I'm very confused by the document cited as it contradicts info on the Thyroid UK site - the document states that normal or low TSH + low FT4 or FT3 = hyperthyroidism, but the Thyroid UK site says normal or low TSH + low FT4/FT3 = hypothyroidism (thyroiduk.org.uk/tuk/testin....
Regarding the T4 tests, it does seem as though patients are being forced to pay privately, which is unacceptable.
The document mentions "Recent treatment for hyperthyroidism", not hyperthyroidism. The thyroid has been treated (radio iodine, drugs or surgery) to correct the hyperthyroidism but the TSH takes time to recover. The key word is 'recent'.
I was forced to pay for a full thyroid profile as I have had many symptoms of hypothyroidism for years and my GP said my TSH of 3.5 was in range. When I returned with a low FT 4 of 11(12-22) I was told that under the NHS she could not treat me until my TSH reaches 10. She has however referred me for an ultrasound as she agrees that my neck is rather puffy. I dont think they realise the impact it can have on a persons health and life.
I think the phrase "He who pays the piper calls the tune" has a certain relevance here.
If a lab is paid a sum to perform "blood testing", then they might well have to decide how much to allocate to each of the many tests they have to run. But if they are paid for each TSH test, for each FT4 test, etc. then the decision moves back to the people making that payment.
We are in the era of the CCG. If they hold the purse strings, as I think they do, they can tell the lab what to test.
As I understand, CCGs have a handsome representation of GPs. Perhaps your GP should be pointing his finger at some of his colleagues rather than the lab?
This article, from 2011 so possible a bit out of date, says quite a lot about these issues:
When did you have your tests done? I had mine just over a week ago and they tested tsh and ft4. Is this a brand new thing? Is it national or does it depend on the lab doing the test? It's nonsense though, tsh doesn't give enough of an indication. I hardly know anything about all this stuff but even I can figure that one out! Stupid guidelines *shakes fist*
The Royal Berkshire hospital lab in Reading refuses to test for T4 if the TSH level is within the reference range. Even when my GP wrote on my form that the Endo had specifically requested that they test for it they still didn't!
Desperation! Since taking T4 I was becoming sicker, Fibro, COPD, unrelenting palpitations, tremors etc. until I was almost continuously bed bound. I was convinced it was T4.
Stopping it proved it to me as the above symptoms & others improved until they ceased. I was so pleased to know that i could feel relatively well.
Starting it again, albeit a different generic, symptoms were returning. ive added T3 which is helping. I dont care for the troughs on T3 only & ive yet to trial NDT which i may do next month.
Thyroid Function Tests get ordered all the time. I suppose they have decided that by restricting all TFTs to a TSH reading only they can save a small fortune. Not only do they save the cost of doing T4 and T3 testing but they also save the associated time it takes as well.
It wont be long before (in all areas) the only people that can get a proper TFT done are hospital consultants and even then only if they specifically request the T4 & T3 levels.
The NHS is wonderful but as the backdoor privatisation continues we are going to see more and more rationing like this. More medical decisions will actually be made by business managers with one eye on cost.
It is shocking that people have to pay privately to get a basic screen test performed properly.
This link "patient.co.uk/doctor/thyroi... should work if you cut and paste it, not sure why it isn't working normally. In an attempt to save money the biochemists and endocrinologists came up with a scheme where they only carry out fT3, fT4 in certain situations such as elevated TSH (unless THEY want the test done themselves). The basic idea is they reckon a GP is too stupid to know what they should be requesting. This process fails on two points. 1. Many GPs have more knowledge of hypothyriodism than endocrinoligsts (they treat more hypothyroid patients). 2. They are only looking at their budget, they don't give a toss how much money is wasted in other unnecessary investigations and care, let alone the cost to the patients.
To everybody. There's no point having a moan about this. If you do not make a polite formal complaint you are part of the problem. Sorry to be so blunt, but there is a process for getting change and it doesn't take much effort to follow it.
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