Are you sitting down? Do you have something soft you can throw? Get ready to be infuriated....
Reply from the labs (I have not included the first paragraph as it was how brilliant, how well trained, how important they are and I did not want any of you to have to resort to blood pressure tablets!) :-
"Royal College of Pathologist guidance encourages laboratories to regularly review and update their test repertoire in light of the appropriateness of tests and clinical testing protocols for specific conditions. In combination with the Prudent Healthcare guidance from the Welsh Assembly Government regarding reducing unnecessary and inappropriate tests, a number of strategies have been developed within the All Wales Laboratory computer system and locally with regard to ensuring appropriate testing is available to patients when needed. Primary care colleagues are regularly informed of any changes in testing strategies or availability and are aware of the importance of providing relevant clinical information with the tests requested. When requests are held, the clinician is given the opportunity to contact the laboratory to discuss the indication further.
With regards to thyroid function monitoring the testing strategies comply with the British Thyroid Guidelines from 2006 and more recently the NICE NG145: Thyroid Disease: assessment and management guideline from 2019. When indicated on a request form that a patient is hypothyroid and on thyroxine, as was your most recent request, then TSH is the first line test, and often the only test that is required. FT3 testing is reflexed when other thyroid hormone results indicate it is needed.
Vitamin D testing is restricted and repeat testing is only indicated in certain patients undergoing specific osteoporosis treatments. Repeat testing is not required for patients on routine supplementation of vitamin D. This complies with 2015 guidance from RCPath (National minimum retesting intervals in pathology. A final report detailing consensus recommendations for minimum retesting intervals for use in pathology) and local HB guidelines (Vitamin D Deficiency: Diagnosis and Management in Children and Adults). "
The lab is wrong on two counts in my case, as my TSH was way below the range, and the NICE recommendation was to do the T3 test. I do take Vit D but I buy this and it not on my notes. They have refused before and when the results came through after the 3rd test, my Vit D was below the bottom of the range. Considering the recent recommendations to take Vit D, how many could be still underdosed or overdosed?
It looks like they are moving to test the TSH only. Why? Just why? We are going backwards...
I have resorted to opening a bottle of red, and making some bread just so I can pummel the hell out of something....
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serenfach
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I am in North Wales and my health board is BCUHB. My TSH is always suppressed (has been for very many years) and my FT4 is always in range when it's a planned test, and for the last few years the lab has always done TSH, FT4 and FT3. FT3 isn't specifically requested, just TFT. I wonder why the difference
I'm lucky in respect that all tests are done but although it gives me the information I need it doesn't help because my GP is totally TSH obsessed and refuses to discuss FT4 and FT3 levels anyway.
Well done on all your hard work but it must be very frustrating for you ☹️
Just to add my ha’peth worth, I’m in mid-Wales under the Powys Teaching health board and I have a full TFT done too when it is requested by the endo. They don’t tend to test Vit D here though, even though I have specifically requested it several times.
I’m not sure whether the testing is done locally, because the endo services we use are based just over the border in England (Shrewsbury) and I believe all the lab testing is done there too although the test itself is done at my GP surgery.
Whichever, I always make sure I have a Medichecks test at the same time so I have two sets of results which do tend to correspond.
On the few occasions that my GP has raised concerns about my almost non-existent TSH I’ve always explained that that is to be expected because I’m taking T3 and she’s been quite happy to let me trundle along saying I probably know more about the thyroid than she does.
Just testing TSH with 'reflex' to do fT3 or fT4 comes from this document british-thyroid-association... . It's very frustrating, I submitted a freedom of information request ibshypo.com/index.php/cost-... which shows how cheap the fT3 and fT4 assays are. Even worse many labs now program their machines to only do TSH and reflex to fT3 or fT4 based on an algorithm so the operator has to specially override it to get fT3 or fT4.
I submitted a polite complaint to the hospital on the basis it would encourage them to do fT3, fT4 in future (as they take the least work option). I have an arrangement with the hospital lab but my GP has to remember to enter a special request - and it has to be in the right box.
I can understand doing just one vit D per patient, it should be enough to get an idea of how much you need to supplement.
They wont agree with you as they seem to be taught that it is only a matter of prescribing levothyroxine and we'll be symptom-free. We, the patients, know better although many do recover their health on levo alone. I couldn't.
I am currently picking apart the Prudent Healthcare Wales to fire back at them. The first point is appropriate tests, treatment and medication, followed by "At an individual level, the health professional and patient must work together". My GP and I were working together, the lab put an end to that!
Maybe put in a Freedom of Information request to the lab/hospital/board in order to find out the incremental cost of a Free T4 and/or Free T3 test?
At least you would then know what they claim to save by refusal. If they can't give that to you, I suggest it rather undermines any case they make based on cost savings.
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Update since last post
Update on BH Bloods and GP visit
Updated results TSH, fT3 & fT4, ferritin and folate
2nd UPDATE 
Endo update.
