I just had the results back for my recent blood tests. I had asked the nurse to add "taking T3" on the form and she did, but said it would not make any difference, they would not test it. She said all the GPs in the practice had tried to alter this, but it seems the labs go by what the local endo says.
I dont think this is true, as there must be an Endo somewhere who knows the importance of testing T3. NHS Wales said they do not have a policy to not test T3. So where did the directive come from?
We are giving you this dangerous drug, very reluctantly, but when you are taking it, we wont test it!
Anyway my T4 was 14.8 (11-25) and my TSH was 0.01 (0.27-4.20), which does not tell me much. Apparently the GP is going to the Endo to ask for advice. The Endo in question will not prescribe T3 at all, and he is a top bod in the Endo world.
I emailed the lab and had a very nice reply, saying they had been told not to do the test unless the T4 was out of range. When asked who had given this directive, she would not say.
GP refused point blank to test for iron/ferritin/vits, but did want to follow up with testing for diabetes. I dont have diabetes. So lets test for something you dont have, but not test for something you do have.
I am sure it makes sense somewhere....
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serenfach
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GP's get set targets by the NHS which they get paid for hitting. Thats probably why they are keen to test you for diabetes.
Thyroid testing and treatment is in a whole different category and we all know how terrible that is. Going forward, if your local NHS are letting you down then private testing is the only sure and certain way to know whats going on if you want to be well. Sad but true.
Free T4 (fT4) 14.8 pmol/L (11 - 25) 27.1%
How do you feel?
What are you taking?
Your FT4 is far too low for the majority of people although some do OK at that level.
No help to you but my GP surgery and lab will test for T3 if you are on T3 meds. And if for some reason the results come back with only TSH and FT4 (usually for my annual review and they forget) then I am given another blood test.
I upped my NDT last week from 2.5 to 3 as a few symptoms were creeping in, but there is other health stuff going on which complicates things.
I will order my own test, as I need to know, and if the GP comes back with a drop in dose, as the TSH will trigger them. They even said my high blood pressure showed I was overdosed! I will have facts to fight back. My vits seem OK and I have a vit D spray.
Just picked loads of blackcurrents, redcurrents and gooseberries from the garden, so summer pudding coming up!
My issue is ironically the reverse to most. I can always get FT3 tested by my GP's surgery (by writing 'patient medicating T3' on the blood bag) but the CCG withdrew by T3 meds twice. Where is the sense in that!
They were tested in December last year, which was why the GP refused to test again, but then they were all mid range. Thanks for thinking about it though.
You had a reply at the time with recommendations for supplements. Your folate was pretty low and B12 not optimal. We need OPTIMAL vitamin levels for our thyroid hormone to work well.
Last year I went straight to the top - NHS Wales, and asked for their policy on testing T3. They said there was no policy. So I went to the labs, who would not say who implemented the policy, after I told them there was no policy.
I contacted my MP, pointing out that the test costs around 90p and could save a life. He got nowhere...
I think I will now do a FOI to Hywel Dda to see what they have in the way of a policy. It seems deny, deny and then ohh look over there, a butterfly is the answer...
I get the distinct impression that the lab people (at some level) are making these decisions. But they are doing so on their own and without proper discussion with clinical staff - probably not endos, certainly not GPs.
Of course, given their workload, trying to get things changed really isn't feasible for most doctors.
I suggest a combination of ignorance and attempting to keep within budgets. They might understand the science around the testing processes, but they are not thyroid specialists. So lack of endo input is critical. And they will never understand that lack of historical test results has, and is continuing to have, profound impacts. Both on individuals and across populations in terms of research.
I suspect they are also missing that if they did something like agree all thyroid tests would include TSH, FT4 and FT3, they might get a deal with a test supplier that would minimise the cost.
And this is not limited to the UK. In recent years i have not been able to get FT3 tested unless TSH is out of range, even when the GP marks it! Luckly my Tsh is always low enough but hubby was not so lucky. This is through a private lab my GP uses. I think the local hospital might be different - if a hospital doc orders it, they should run it. So this is purely lab policy. It makes zero sense.
I was thinking it may have to do with insurance reimbursement, but that's also not it, because for example Hba1c is not covered if you're not diabetic, but they always run it for me and i just pay out of pocket. So why can't i do that with FT3. Bizarre.
Before I started typing, I had been going to say something about that.
I have read of healthcare professionals in several countries going on about the cost of thyroid testing. Not only is levothyroxine one of the most prescribed medicines, but thyroid tests are among the most demanded lab tests. (I think the basic Full Blood Count, Us&Es, blood sugars, etc. might be much higher but they are so embedded that no-one even notices them.)
Truth is, we don't need less testing, we need more. Far, far more.
But all they can see is the cost of the blood tests. The appointments. The phlebotomists. The delivery to the lab. The analysis. The management of results. And the need for doctors to understand and care.
Imagine the new Apple Watch in 2035 includes continuous thyroid level monitoring. As people start using them, doctors will slowly start to see that you literally cannot have too many tests! They will see parallels to blood glucose which has, by then, been available for way over a decade. They will see that if you have two dots on a graph, separated by 6 weeks or 6 months, you actually know precisely NOTHING about what happened between them. They will see that, in most cases, if you adjust a dose, you can actually know quite quickly if that new dose will overshoot the target. They will see that very small changes to dose are required.
If you don't believe the Apple Watch could ever do TSH, FT4 and FT3 many times a day, you could well be right. But a host of things that are readily measurable might prove to be sufficient.
Various compounds that can be detected through the skin (e.g. by some sort of laser device).
Muscle changes - delayed relaxation being a key sign of hypothyroidism.
Temperature (which exists) and how bodily and environmental temperatures interact with each other.
Voice analysis.
Gait analysis.
Sleep analysis.
(Other smart devices are available. But the Apple Watch is likely the best known, hence easiest to discuss.)
At the crudest level, consider how many cars now have some sort of tyre pressure monitoring. Before that, you could be losing pressure from a nail you've just picked up but be unaware. Even with the feel of the car changing, you have to notice, then find somewhere safe to stop, by which time you probably have a damaged tyre. The earlier you know, the greater the window for getting to safety and, maybe, fixing the tyre.
To add to the Apple Watch, how about other smart tech possibilities?
Urine dipstick tests which you photograph with any phone - and the app identifies the colours - accurately, repeatably. A small code printed on them identifies the strip used, hence the appropriate way of reading them. Collect data into your health app.
I think we need a positive effort to extract all the known physical characteristics of diseases and establish correlations between them and their presence in real patients.
Where possible, extending that to how the signs come about - i.e. the causal mechanisms.
Not rely on what individual authors decided to note. But a really comprehensive approach.
I think it’s a lottery. I get my T3 tested through my NHS GP surgery every 3 months without fail. The blood form is printed but they have to hand write ‘test T3’ on it. It’s always done at the hospital lab. If it wasn’t done I’d phone pathology and ask why not. This did happen once. I explained I’m on T3 medication from the hospital pharmacy and it needs to be checked. They did it. There shouldn’t be any reluctance to test T3 across the NHS. My belief as to the reason they won’t check in some areas is in case they need to prescribe it. As we know it’s very difficult to obtain a T3 prescription from the NHS. In my recent consultation with my NHS Endo he asked me.. do you realise how lucky you are to be prescribed T3 liothyronine. I thought to myself… lucky? I don’t feel lucky having this illness. But I definitely know I need it. I just replied… Definitely! Terrible how they are with thyroid poor converter patients.
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