It is often said that FT4 and FT3 are not tested due to costs.
This seems to be confirmed by several papers which proudly claim how they have reduced costs by not doing FT4 and FT3 tests - just TSH. As well as the attitudes of medics and labs towards FT4 and FT3 testing which dismiss their importance but never actually provide any basis for claiming they positively should not be done. (Quite often, there is even some suggestion that because most of the time TSH-only is fine, that justifies almost never doing FT4 and FT3.)
I wonder what the reaction would be if a significant lab tried to negotiate with a major lab analyser to supply the tests as a bundle, TSH, FT4 and FT3?
Is there any possibility that the bundled cost wouldn't actually be any greater? At present we see so many repeated tests because FT4 and/or FT3 were not done, that itself must add to costs - phlebotomy as well as analysis. (Especially if the repeat test redoes TSH as well as adding FT4 and/or FT3.)
The analyser company might even see some advantage to supplying as a bundle. One package of reagents to be managed instead of three. Pushing themselves as a "better" supplier than the other analyser manufacturers. Increasing volume of FT4 and FT3 tests required thus reducing unit costs.
After all, we already see this approach for Full Blood Count where numerous factors are all measured without any discrimination between patients. It helps that many of the constituent tests are capable of extremely low cost implementation. But nonetheless it does suggest itself as a precedent.
Many might see advantages in other areas. No need for each and every test request to be considered and a decision made. No need for a questionable cascade/reflex approach to decide which tests. No arguments with patients. Collect a history of all three which might be of future interest even if that is not currently realised.
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helvella
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Isn't that a shame. TSH does not tell the story. They are missing the largest puzzle to our well-being. I was dosed by TSH many a times and felt it too. The only difference was that back then I didn't know better. Now I make sure that they test The FT-4 FT-3. Thank you Helvella for bring a very important issues to the forum. My question is why bother testing all together? They can save even more money. Why not go by how the patient feels? Maybe that would be a far better way to go.
I do think it worth testing both for undiagnosed/untreated and when treated - as a guard against misinterpretation of symptoms if you rely entirely on how you feel.
Imagine your FT4 is stable for years, then suddenly shoots up, or drops to the floor. Good to have some confirmation your current issues, why you went to the doctor, might be due to thyroid. Or an indication definitely to also consider non-thyroid issues.
Doctors are trained to believe that patients, particularly female ones, are attention-seeking hypochondriacs who just don't understand how a normal body feels and we attach too much importance to "normal bodily sensations".
Also, a patient who says they feel fatigued or tired is often told that "everyone feels tired sometimes".
A woman with excruciating period pains is told that "periods always hurt".
Every symptom has a way of being disbelieved and dismissed. Doctors have a dismissive answer on tap for every symptom that is invisible.
I really think that "how the patient feels" is, in the opinion of doctors, the least important thing a patient can tell them.
I agree with you. But being that patients many of them not getting the right and proper care by their Dr's are now finding themselves doing it on their own. Going by TSH is just one of the reasons. One can not expect to feel well by testing the TSH alone. There are many components to our well-being. FT-4 FT-3 and nutrients.
Oh yes, I know that self-help is vital for those who don't get better with the standard treatment.
After a lifetime of being disbelieved by doctors about every invisible symptom I've become completely cynical about them, and distrust their knowledge about just about everything.
I couldn't agree with you more. Great minds think alike. Thank you for validating not only my feelings but many others too. Health and Well-being to all.
you're so right about invisible symptoms.. i got an astonishing amount of attention last week for a probably harmless 'big purple thumb' .. got 2 real life GP's (in person!) on the same day i asked about it , a follow up phone from GP number 1 ,two days later , and some blood tests. It even made them agree to do my overdue TFT's. (once i reminded them)
But go in and say "i can't function anymore, and my life's going down the pan".... and you get .. Nada.
Maybe we should all stain our thumbs purple in future if we want anyone to listen.
I must admit I try and avoid going to see doctors about invisible things because, mostly, they assume I'm attention-seeking and/or drug-seeking, and just gaslight me. I will do everything possible to treat myself for everything.
But visible things? At least they will treat me if they have to. But I can still see sometimes that it annoys them that I have a good reason to be there and they can't ignore me. I've always assumed that my medical records have lots of warning flags on them and that is why I can tell a receptionist my name and address, and having found me they scowl at me.
I’ve definitely got a note against my name - I have some ideas what it might be but I’m far too polite to proffer my suspicions here! 😂👍. My symptoms are starting to creep back after about 10 weeks of stability- but I’m still slightly off dose if we use the guide 1.6 µg/ kilogram of levothyroxine. I think I may be one of the lucky ones I’m keeping my fingers crossed🤞
Doing a blue horizon tomorrow so we will see. I’ve been able to argue the case for an increase in dose despite being within range and (guffaw guffaw) ‘normal’.
Only joking .. it went down a bit and stopped hurting .. then popped again two days later when washing up and just putting a plate in the rack .. and swelled up massive all over again .. hence GP now wants to see if my bloods too thin .. they didn't do anything intelligent like check my blood pressure though, or ask for my overdue TFT;s to be done ..so i did that bit for them .
I wonder if that is a symptom of thin blood then tattybogle ? I was asked at last NHS blood test if I had been on blood thinners as my blood was thin too.
My doctor just puts “tired all the time” on the notes that I can read on patient access.Goodness knows what she writes on the bits I don’t get access to…….
Getting your basic nutrients checked could show up low levels. And people with thyroid disease really, really, really need optimal levels to have any hope of feeling well. There is a huge difference, for example, between having a serum vitamin B12 level of 200 and having a level of 1000. Ferritin of 20 is going to make anyone feel fatigued, whereas a level of 100 could transform energy levels.
So if you haven't had nutrients tested it could make all the difference to how you feel.
Now that you mention this, it is astonishing that no lab has already seen this route to more business, as it would increase their turnover of blood tests significantly and it could be “sold” to GPs as a huge benefit to the practice. All they need to do is figure out a price to please both sides.
seriously though, it would be such a good idea for NHS to always do all three at once. We would all , patient's , GP's, and researchers have much better information to go off , and much might be learned by everyone without having to go to all the trouble and expense of getting research trials set up. I must be lucky .... (or perhaps it's because my TSH was usually either very low in range or slightly below range) ..... but i've always had both TSH and fT4 done by NHS, (and a few fT3's too, but never when they would have been most interesting)
If they did all 3 routinely, they might understand why i had overmedicated symptoms when T4 was 119% but didn't have any at all when it was 242% ,, but of course they didn't do fT3 on those occasions.
Whereas if they hadn't done fT4 last time due to TSH being fine at 1.9 ...they would assume my fT4 levels were fine ... when in fact they were 142% ..
Guess what, I had all three tests done at the same time on the last bloods I had, but although blood was taken by, and the testing done at an NHS Lab, it was via a Private Doctor. Definitely no cost saving to me, as I had to pay. Will get it done by Blue Horizon next time as at least I get a discount from them!
TSH-only testing on therapy or when untreated hypothyroidism exists have very different relationships to FT4 and FT3. The papers always make this assumption. That the relationship between TSH and FT4/3 on treatment is the same as in health. Not only is this an untested (by them) assumption but it is factually wrong when no thyroid exists. They make the further assumption that TSH is related closely to FT3 levels on T4 therapy. It is not. It's becoming clearer to me that the problem is that these advocates of TSH-only either are ignorant of the literature condeming their position or possibly have read it and don't understand. I think the first alterantive is correct. There is also the patient perspective. Leese boasted that in 11000+patients on T4, only a tiny minority had abnormal TSH out of the healthy range. All I can say to that is that 11000+ patients were consequently inadequately treated and any persisting problems were linked to the dreaded Weetman somatic illness idea. ie if they weren't cured by the regime, that's the patient's fault and not the doctor's.
I find it appalling that he uses the term "normal" as in:
People with a normal free T4 and free T3...
Moreso that he does that in the context of an endocrinology establishment which appears to do pretty much everything it can to ensure that FT4 and FT3 are rarely tested. It is they who have advised labs, and acquiesced in the limitation of testing beyond TSH.
Any consideration to writing a short article for somewhere like the BMJ - which seems to often be as far as most GPs ever go?
Obvious answer to that has to be 'we shouldn't have to'.
That said, my experience of 'going private' for endocrinology wasn't a good one anyway. Of course, things may have changed over the last fifteen years. That said, if a private endo can recognise that there are 'seven billion versions of normal on this planet' why can't an NHS endo? After all, most endos work in both sectors!
And there really is no excuse for 'ignorance of the latest literature' if they are writing papers about a condition .. no excuse at all .... if all these brain numbed thyroid patients, most of whom who have to read each sentence 3 times, can have a passable stab at understanding new papers showing how TSH is different on treatment ... what excuse can these guys possibly have for not being aware of any new ideas. It's hard to come up with any explanation other than 'chronic lack of interest in their job'
which usually means it's time to 'get out of the way, and find a different job that does interest you'
and they are not being fussy who they take either .. one of my daughter friends .... (who we all love dearly , but ya know .... one of those who needed 8 goes at passing the driving test and has already had so many bumps in so many different cars that you already feel sorry for the next car she gets her hands on ) ... has just come back from the Job centre having been advised to become a lorry driver.
I can drive a lorry , but only on a good day and i need a little nap every 60 miles.
My lads got an HGV class 1 licence , but he packed it in cos the conditions of employment were bloody appalling in most agencies he drove for , and he saw the poor state of health of all the older guys . Don't think he'd want to go back to it no matter how much they offered.
Thanks for that, Tattybogle. Just checking my emails before going to bed and am still laughing. Have a very early start for travel tomorrow and will now have a good night’s sleep with a grin on my face.
I think doctors do medicine- I’m not entirely sure they understand science and how to interpret data and understand stats. As far as I can see the surgery that I am registered at most of the GPs there think the range is a cup and the patient is a ping-pong ball and if you get the ping-pong ball into the cup you win a prize.
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