I finally convinced my GP to send me for a full set of thyroid bloods tests (after 20 years and 8 GP's)Yippee! BUT then she said 'but the lab might not do all the tests'. I said 'What? I want the them as the patient, you want them as the doctor but the lab has the right to refuse? Are you kidding me?' She back-tracked and said she was sure they would all be done (next week). I have since read that GP practices have 'arrangements' with labs not to test futher if TSH is normal.
Question: Is this correct? (If so it cannot be legal) Who makes these 'deals' and who is responsible when (as has to happen) patients are left ill or worse? And finally, who is ultimately responsible for this practice and who has the authority to put a stop to it?
I could go for private blood tests. I might consider self medicating. But most of all |I would like all participating GP practices and laboritories held to account.
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noquitter
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Not the GPs fault. It is an agreement between the endocrinologists and biochemists that they will restrict GPs' blood test requests. Supposed to be based on efficiency and cost saving but is pure arrogance. Best you can do is to complain to the hospital if the blood test is not done. The GP is not to blame.
Thank you for your response. I'm glad that the GP's are not to blame, but I'm surprised that the situation continues. I've had my blood taken today - and we'll see what comes back - ie just TSH or more. Is there a 'protest' or lobbying group addressing this?
Very unlikely to get more than TSH ....unless TSH is out of range
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Has GP requested to test vitamin levels and thyroid antibodies?
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
Thank you so much for your response. I have requested vitamin levels be tested, and I have asked for all the thyroid tests you mention - backed by GP. I have also insisted that the test be taken before 9am. I was aware that there is a huge problem with thyroid testing where a patient's TSH falls within range. And I know that the ranges vary from lab to lab. Also that in the US and many Europan countries treatment starts with a TSH of less than 3 pmol/L but uniquely in UK the upper end of the range is 4 or even 5. Like many others I have all the symptoms but a 'normal' TSH. I also have a family saturated in thyroid problems. So, blood tests done tody and we'll see..
Thanks particularly for the info re: private blood testing - that's plan B.
Reading around this Forum you will soon see how poor the testing is and then even poorer the understanding of results.
Western Medecine is a business model and not about Preventative Medicine. Keeping patients poorly creates an opportunity for the myriad of symptoms to be treated individually and making money for Big Pharma.
As more and more is privatised in the NHS it needs to look attractive to the buyer, so keeping costs down is key. Getting us familiar with phone/video appointments is just the start 🌻
Thanks for your reply. Yes, I know about Big Pharma and the profit motive. And I agree about the telephone appointments etc. But is there someone somewhere spear-heading the fight for better? Surely we patients have some clout? It's wonderful that people are willing to reply to posts like mine with comment and info - truly wonderful - but I feel there should be some big well publicised campaign. I mean I know we're all exhausted (joke) but surely we can do more.
I have been an active member here since 2011 - and things have not changed hugely. There is a FB Group - ITT - Improve Thyroid Treatment - set up by 2 members here. There was a recent post here on their success ...
Most people share and support here and slowly find wellness.
Regarding your testing - your GP may well request everything thyroid - that does not mean the Lab will oblige.
Thanks for reply. Yes, I can see that the fight is unequal, and thank you for info about ITT. I realise that the lab may only do the TSH if it is 'within normal range', but intend to follow through one way or another. Too important to let go. I am angry (have been for a long time) that this treatment (or lack of it) is allowed to continue. The support on this site is tremendous - but it shouldn't be necessary. It's an injusice affecting a lot of people. It's wrong.
I stopped being angry a long time ago ! Best to paddle your own canoe and find wellness. Take a quick look at my Bio - click onto my username - as you can others for a quick read 🌻
I can see that a lot of people are doing what you suggest - I'm heading that way myself. No option at the moment. And it's certainly better not to waste too much energy when you haven't got much. Doesn't mean the injustice should be ignored.
You might have got more help if you'd given more details. Do you have a hypo diagnosis? Are you taking levo? Etc. etc. etc. The more details the better. Try again with a new post, so that more people see it.
Thank you for responding. I was diagnosed 25 years ago by a doctor associated with Thyroid UK. I then emigrated and that doctor stopped prescribing (|I don't know why) So, now back in UK, I do not have a diagnosis, and not taking medication. Getting a GP beyond a 'within range' TSH has been a big first hurdle in spite of having every symptom possible. My plan B is to get blood tests done privately.
I am apalled that this situation has gone on for so long. If patients were treated it would be cost effective in the long term for the NHS - but not for the drug companies, presumably?
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