What do people think about lobbying Nice and CCGs regards this arbitrary stopping of T3 testing?
It's still in the guidelines last time I looked. So appears to be decisions made at local levels without formal ratification.
T3 testing: What do people think about lobbying... - Thyroid UK
T3 testing
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Algic
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Hi i would like my gp to test Free T3 too. So any tips or advice to have it tested would be greatly appreciated ☺
My next gp test is in 6 months. I will ask as i know that's the most important test. I think gps won't know that. What reason could I give?
The body does everything it can to keep T3 stable and within very tight parameters, so it’s obviously key to proper health. The rest is the apparatus needed to serve this purpose they are looking at it from the wrong perspective!
You could try an article to help switch on a few much needed lights in the very darkened room of GP thyroid knowledge! Some of DrTania Smith's are very illuminating and well written . Depends if your GP is a thinker or a horse which you can take to water but can’t make it drink, as to whether you can get anywhere further than blind adherence to TSH worship.
These two are quite good:
thyroidpatients.ca/2019/12/...
thyroidpatients.ca/2020/05/...
Thanks so much. I have 6 monthly tests so i will ask when my next one is due. I've read that although the gp asks for it the lab often refuses it which is annoying.
Totally agree. Leaves us with only two options, to remain ignorant or to pay for our own test. Rubbish isn’t it?
Yes I agree completely. I had private tests done in march. But the recent nhs ones are totally different. So not sure which is accurate.
Perhaps they are both accurate but your levels are fluctuating unless they were done at exactly the same time. It was mentioned here on another post they are allowed quite a wide margin of error for individual tests I think it was about 8% leeway so that could account for differences from different labs.
OK thanks. I'm not sure. My t4 on private labs was 18.3 last time. It's 13 on nhs. Same with tsh 3,52 and nhs was 2.5 both done at 8.15 with only water.
We they done from the same blood draw then? I’ll see if I can find the thread about testing accuracy and margins of error to see if this discrepancy could account for those differences. They seem a lot but the TSH is too high whichever you take. I’m useless on T4.
No. The private blood draw was done in march and the nhs was done last Monday. I expected my tsh to get higher not lower as trying to get diagnosed.
That’s a blow - it can go up and down quite a bit. The insanity is letting it rise to 10 before doing anything you might get somewhere at 5 if you have a good GP - it’s 3.5 in Germany and most other places but not medieval Britain stuck in the thyroid dark ages. They couldn’t argue with mine it was 110 two weeks after being undetectable 😳 I was very poorly indeed. That’s not to say you can’t feel truly awful with much lower numbers - in some ways it was worse as there’s more awareness. I was just getting through moment to moment which uses a lot of energy and I was incapable of any type of reflective thinking. I hope you get treatment soon.
Wow! You must have felt really poorly with those levels. I only just realised i was supppsed to have 6 monthly thyroid checks after coming across paperwork from rheumatology (2018) Due to very high tpo antibodies. So i chased it up last week. Just keeping my fingers crossed my levels change on the next test. 6 months seems so long away 😔
It is an eternity away if you are ill with thyroid problems they are so wide ranging and debilitating. At least it’s better than annual check ups. Good luck with it.
Yes that's very true. Will get a better picture on the next test hopefully. Thanks for taking the time to reply.
Best wishes ☺
Dr Tania Smith has just done a new blog that I think you’ll find very interesting about T3 and why it so important.
Or protest!
Not sure who I could protest to. Have written to MP who is very sympathetic but powerless to do much about it. GP leaves me to my own devices. There’s been things mooted here before but it has never gone anywhere. In fact protesting seemed to ensure more draconian measures were taken making NDT very difficult to buy and T3 effectively withdrawn as a treatment as if to slap us down for having the temerity to complain about the injustice of it all
I'm not very good at being assertive and generally just go by what my gp says. I will have a look for an article though.
Great advice from Hidden . If you aren't good at being assertive, can you take someone (ideally a MAN) with you, to help out?
PS my understanding is that the free T3 test is no more expensive than eg TSH - it's getting a "bad" result that's expensive, as they would really REALLY prefer not have to do anything about poor conversion - like acknowledge it even exists!
Hi sadly no i dont have a male to take with me. It will be a request over the phone though. When i next arrange my appointment.
Yes that's true. I wonder what the reason is for not doing it. Maybe is too expensive.
I think it was jimh111 who asked his local lab how much the various thyroid-related tests cost. If I remember correctly a Free T4 and a Free T3 test cost about the same, within one or two pence. And they each cost between 90p and a pound.
OK thank you. I'm just curious to see what my free t3 levels are as nhs have never tested them.
That's correct. Also, the NICE guidelines nice.org.uk/guidance/ng145/... (see page 7) quote costs of assays.
For example, the cost of TSH + fT4 varies between £1-80 and £11-05. Don't these NSH hospitals benchmark? When I worked in industry every cost was benchmarked and we demanded to pay the lowest cost. I sometimes think the NHS budget should be reduced by 50% overnight so that they get a kick up the backside and seek good value.
My local hospital costs are: -
TSH £0.90
fT3 £0.92
fT4 £0.92
There's no reason why any hospital should pay more.
Beware that if the GP orders fT3 the lab often doesn't do it. The trick is to get hold of the results within a few days and if fT3 hasn't been done complain to the lab so they get fed up and start behaving.
Many labs now program their machines so that fT3 is only done if TSH is very low, so any request has to be blunt so the thickies can understand they need to override the machine settings.
Yes i thought that. I will speak to my gp when arranging my next test. My levels are being monitored every 6 months by request of rheumatologist as he says due to high tpo antibodies i'm at risk of developing autoimmune thyroid disease.
Oh really? I feel annoyed with myself now for not asking before. I had my first one on monday but they only did tsh and free t4.
When my rheumatologist tested my levels before he also only did tsh and ft4 🤔
SlowDragonAdministrator
If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3
£29 (via NHS private service ) and 10% off if go on thyroid uk for code
thyroiduk.org/getting-a-dia...
monitormyhealth.org.uk/thyr...
Thanks for the info.
That is what it seems people are doing but it seems so wrong to me.
The NHS should be providing it free at the point of delivery etc. It's not as if anyone can give a clear answer as to why plus it appears the Drs who stopped it haven't a clue what it does. That was the overall impression I got .
I haven't got that £29 spare I'm one of the women who has lost her right to state pension at 60 and I had to take medical retirement which was a battle.
I know you mean to be helpful but I can't understand why we are standing for such treatment. Things are not going to change unless we start saying I'm paying x pounds a year to get the necessary medical tests done to manage my condition, because my drs can't order them but they will listen to the results. Until 2019 I didn't have topay in other parts of the country they have drs who understand the importance of this test. It's about successful management not about the politics of prescribing . That is a different issue but it remains a useful indication of if the patient is well.
I might as well write to the CCG and inform them they will be sent the invoice if I have to have private testing
Unfortunately NICE guidelines are quite clear
ONLY test Ft3 if TSH is BELOW RANGE
nice.org.uk/guidance/ng145/...
Tests when thyroid dysfunction is suspected
1.2.8 Consider measuring thyroid-stimulating hormone (TSH) alone for adults when secondary thyroid dysfunction (pituitary disease) is not suspected. Then: if the TSH is above the reference range, measure free thyroxine (FT4) in the same sample if the TSH is below the reference range, measure FT4 and free tri-iodothyronine (FT3) in the same sample.
1.2.9 Consider measuring both TSH and FT4 for: adults when secondary thyroid dysfunction (pituitary disease) is suspected children and young people.
If the TSH is below the reference range, measure FT3 in the same sample.
NICE don’t consider the possibilities of poor conversion of Ft4 to Ft3 on levothyroxine
Nice are not fit for purpose it seems to me
This appears to have been altered in Jan when it was mooted that treatment with T3 only was putting patients at risk. It's still not being done in adherence to these guidelines. The labs have been instructed in my area to not test Inc A&E requests.
Many laboratories now have automated set up so that Ft3 test is only done if TSH below bottom of range ....even if GP requests it will often be ignored
Would someone be willing to draft a letter we could send quoting the right research , that could be sent to mps, ccgs, and hospital chief executives .This is a practice used by many groups such as change , 38 degrees etc it removes the confrontation that nobody wants to make with their gp.
Mine did keep trying and was told it was the labs. As part of my run in with the "strange" endos they told me it was them who stopped it. But they were presenting a case based on their research to prescribe t3. I kept saying about the medical need to test not that I was seeking T3.she insisted on telling me about the research. Which as they aren't testing was a major flaw
But a standard letter even if it goes through one of the big petition groups will show we have a voice and are not prepared to be further abused.
Why are we being marginalized all the time , is it because a large percentage of us are women or is it because we don't have a condition that makes the hospital look good or do they think it's so simple anyone can deal with it?
Other conditions don't get ignored the way we do. So sorry but I'm now getting angry that I can get better treatment for asthma because we fought, recognition for fibromyalgia and clinicians are starting to learn it's based in the body not the mind because people made the choice to make a stand but we are treated as if we are hysterics. One endo said we don't know much about how the thyroid works! You have got to be kidding . The people on this group are very knowledgeable so I wonder what's being taught.
Ok rant over going back to blanket fort to do deep breathing but if I have to pay for a private test I'm sending the bill to CCG on the grounds that I'm not being properly assessed in lines with NICE guidance.
Fibromyalgia is dustbin diagnosis
Frequently linked to poor conversion of Ft4 to Ft3 and low Ft3
healthrising.org/blog/2019/...
thyroiduk.org/tuk/research/...
stopthethyroidmadness.com/f...
prohealth.com/library/new-t...
chriskresser.com/low-t3-syn...
holtorfmed.com/download/chr...
It's actually now thought to be a brain chemical disorder. I've just seen one of the leading exoerts. I can ask his opinion it might lend weight to getting a test . So thanks for The links. The mitochondrial theory was based on some research based on hand muscle tissue biopsies . This couldn't be replecated. We are known as fibro warriors as we don't take anything on face value. Your absolutely right it was the dustbin diagnosis but that's now CFS. The brain charity library houses 60 books alone on fibro. Our group leader regularly publishes up to date research and education plus awareness raising posters. So far research has identified 200 plus symptoms . I'll ask our moderator as well in case any links are useful to post. Thanks
Fibromyalgia group on health unlocked won’t allow any mention of possible thyroid connections to fibromyalgia
I have tried and I actually joined the party to try to get my local MP to ask Matt Hancock about this but they are not interested in doing anything to change the blood tests or anything else.
Here is the thread I started about the reply I got from my local MP who has now been promoted and is in London all the time.
Just to add I am now getting 3 emails a week asking me to donate to the party because of the coronavirus .... I have no intention of giving them a penny after the shambles they have made with track and trace etc.
healthunlocked.com/thyroidu...
Email direct. I complained direct about being asked 3 times to chat my husband because he was from a nursing home despite no provision of medical reasons. Also the hospital was so short of ppe that I was part of a group making scrubs. It was read .I didn't get a response but the hospital got a huge delivery of old and scrubs within a week. They half listen but copy in your mp to keep things going.
Right some idiot with the bright idea of stopping the debate persuaded Nice that some research stated that treatment with only T3 increased the risk of cancer and bone loss. I treat all research as let's see it replicated. But that is no reason to stop the rest to give a better diagnostic result. I've joined ITT. It's also very inconsistent across trusts so I suggest that your Gp is only obeying orders. It's a waste of energy and will upset you and your gp badgering for the test. Go to the top. Complain to your CCG and ask why it's been stopped for DIAGNOSTIC purposes. Talk about the need for the testing to be done to give accurate amounts of levo. That way it avoids the controversy of T3.
Inc any thing that indicates why ( It won't be read ) but accurate references matter. Explain simply that you want accurate treatment.
now if it indicates you need treatment with T3 and it's only offered privately then another letter stating in order to be treated successfully it's not provided on the NHS in this area which is a post code lottery. Could they explain this as they are not treating you with equity. Throw in some refs to human rights act , right to family life , not to be subjected to abuse.
Several areas have won!
Then we start with getting the test reinstated for accuracy of diagnosis and T4 treatment.
OK thanks. I can only ask i suppose. Even if gp requests it the lab might still refuse.
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