So, followed the different courses to pursue this issue. Finally found the right PALS to complain to. Explained to them all of how I have been stuck on a low dose of levothyroxine because my tsh was high normal. How the GP is blocked from even requesting a T4 test thus won't prescribe more. Quoted the NICE guidelines.
They said they would investigate....
You know what response I got back???
"I have been advised that your tests were processed within the lab and are now available to you on your NHS App/ Patient know best account and to your GP too.
Please do let me know If I can be of any further assistance"
I swear they must have completely glossed over everything I said. Tests that have never been allowed to ne run cannot be accessible.
Yes, I have written back.
How do you people go years with this nonsense???
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Obsdian
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ps. labs do keep samples for a certain time after initial tests.. so depending on how long ago the sample was taken it is theoretically possible that the lab HAVE now done further tests on same sample. Unlikely , but ,worth checking.
my feeling is that labs are trying to save money and will test the TSH and that is very high/low only then will they test T4 and if that is abnormal test T3. It’s all a cost cutting exercise
That's what my doctor said basically, that the lab blocks it as nhs cost saving. Only difference is she added only an endocrinologist can request the t3 test be run.
The analysis machines are often preprogrammed to test TSH and then fT3 if TSH is low and fT4 if TSH is high.I had to put a polite request to PALS a few times and eventually got a letter from the chief biochemist saying to get my GP to refer my blood test requests to them so I could get fT3 and fT4 tested. They have to manually override the machine.
Blood tests for endocrinologists are done locally at the hospital and all three hormones are done.
Blood tests for GPs are sent off to Blood Tests London who implement the above algorithm at the request of the ICB. Blood Tests London are the same company that runs TFTs for patients as exhorbitant cost. A few years ago I did an FOI request that revealed the hospital pays 92p for an fT3 or fT4 assay
Regards cost. NICE are a bit vague and if memory serves me they quote 5 different sources for the price of measuring TSH varying from under a pound to over £5. I put in a FOI to my local health authority in Scotland asking the differential cost between the lab measuring TSH alone to adding in FT4 and FT3. They replied they didn't have that info so I don't see how they can refuse on cost grounds. Fortunately, my GP does ask for full thyroid panel. The few times FT3 hasn't been done I have asked for them to repeat it. My GP admits to not understanding the role of T3 and goes along with what I say probably to keep me quiet !
Thats how much respect (not) we are entitled to. It’s less than £1 for each of the three basics we need. So saving on testing £2. Spending on drugs for Co-morbidities £XXXX.
Adding insult to injury of course, many of us test privately which is much more expensive.
Have gone back and forth with PALS today until they finally contacted the right people. According to them, GPs have had access all along but they agreed GPs probably don't know how to access it.
They gave me instructions to pass on to my GP surgery. My surgery has been in contact already and are going to arrange to meet and explore the instructions on accessing T4 tests.
Using the information I finally got via PALS, my GP is now able to request T4 tests and it has been added to my record to have them done.
They were offering to run one right away and schedule a blood test. I reminded them I paid privately this time but said when mt next test is due to be done I'd like both done then so the doctor can consider my dosage.
(I probably still need to pay to get my t3 done but that doesn't seem a battle with any hope or supporting NICE guidelines).
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