For heavens sake!

[CaroleM-A]

Is it any wonder we are always battling ignorance?

This is the advice on the patient info website

It doesn’t matter if you have taken your thyroid medication just before the blood test!

#%€$¥*>#

[humanbean]

Doctors like ignorant patients - they are so much easier to manipulate and dismiss.

[buddy99 in reply to humanbean]

I find that doctors like to find a reason to blame the patient. If the patient is ignorant their ignorance caused whatever problem arises. If the patient is well informed they are "non compliant" (meaning a pain in the rear end) and thus cause whatever problem arises. In addition informed patients are a wonderful excuse to unload all of the physician's frustrations and stress on the patient in one giant hissy fit or similarly unpleasant action. Even though doctors believe themselves to be superior they are painfully human.

[helvella Administrator Thyroid UK]

Ages ago, I did complain to patient.info about something. Just can't remember what! But certainly a good idea to contact them.

Feedback

We encourage user feedback on a simple form available from the bottom of every clinical page we publish on our website. All constructive feedback is considered and investigated and, if necessary, the authored content is revised as soon as possible.

patient.info/editorial-policy

[CaroleM-A in reply to helvella]

Found what I was looking for. I knew I’d read it somewhere. Not much use though as it’s in the shared care agreement for Liothyronine prescribing (not T4!)

“Monitoring is by TSH levels measured from blood tests taken prior to the morning medication.”

[Hashihouseman]

Why does it matter? Particularly for t4, it’s immediate effects on tsh are supposed to be negligible (but debatable) and if you subscribe to that view, that t4 is a buffer pro-hormone with 7 day half life, then taking a blood test after a regular dose of levothyroxine shouldn’t have any implications and indeed is perhaps important to know what the patients levels are during normal replacement, without fiddling the test! T3 on the other hand will undoubtedly skew a blood test if too close together.

[helvella Administrator Thyroid UK in reply to Hashihouseman]

But it would have a significant impact if they do a Free T4 test!

Whilst we continually complain that only TSH is tested on many occasions, as soon as you assume that, they seem to suddenly do a Free T4 test.

No-one can satisfactorily allow for time between ingestion and blood levels - in the way that would be needed to make some sort of adjustment.

[Hashihouseman in reply to helvella]

In which case the whole paradigm for t4 dosing is flawed….. either ft4 responds quickly to ingested t4 or it doesn’t , if the theory that it does holds then you wouldn’t want to test after a t4 dose that is 24HRS worth of t4 in one hit but in the same analysis you wouldn’t want to take enough t4 to screw up your ft4 etc in one big dose. This is why t4 should be split into 3 or 4 so that the effects on plasma free t4 aren’t disrupted beyond physiological norms and there is then therefore no need to be concerned about the timing of a blood test. Alternatively believe the theory that ft4 is stable in the face of more or less any size dose of t4, take your whole daily dose in one hit and don’t bother with changing that to avoid influencing a blood test!

[Hashihouseman in reply to helvella]

Also… if our replacement thyroid dosing regime is the direct driver of our thyroid status 24/7 one could we’ll argue that we should test levels at any time because that shows our managed thyroid status as it is every day of our replacement regime. If we avoid testing after a dose we are then blind to what is going on for a significant part of our daily response to replacement.

[helvella Administrator Thyroid UK in reply to Hashihouseman]

In which case, repeat tests 24 (or more) times a day?

The peak of Free T4 from taking a tablet is so sharp that even hourly testing might not reflect it accurately. Whereas the trough as we approach our next dose is very slow-changing and testing then removes the significance of the peak.

[Hashihouseman in reply to helvella]

Where’s the evidential proof on that? If it’s so sharp we shouldn’t be dosing it like that because it disrupts homeostasis not least in retarding t4-3 conversion via t4 ubiquination. Actually I have seen some data showing the 2-5 hr peak after ingestion and it does indeed give a concern about how that would affect a test but the bigger concern should be if that’s the case then it’s much more significant for our every day allostatic response than it is for the occasional blood test. If you only 25mcg doses there is no peak.

[helvella Administrator Thyroid UK in reply to Hashihouseman]

I happen to agree that once-a-day dosing is far from optimum.

The problem is achieving other dosing regimes given the tendency of levothyroxine absorption to be affected by so many foods, drinks, supplements and other medicines.

If someone devised an implantable device which could be programmed to dose every ten minutes, half hour or hour (or whatever makes sense), that might be a much better approach. But take into account safety, reliability, adjustability, and - most importantly - cost, and I think it isn't going to happen.

[RedApple Administrator in reply to Hashihouseman]

It matters because so many doctors do not understand and account for the relationship between TSH, FT4 (and the circadian rhythm) in patients on replacement hormone.

We have seen members have their levothyroxine dose reduced on the basis of a high FT4 number, regardless of an accompanying high or in range TSH.

When queried, it has typically been the case that the member took their levo within a short time of having the blood draw for thyroid function. Hence the 'peak' FT4 level was recorded, rather than their average or lowest FT4 level. Ideally, FT4 is perhaps better tested at the mid point i.e. 12 hours before or after a dose of levo.

Consistency in testing time of day is also important, in order to facilitate comparison from one test to the next. Most especially when titrating dose.

Granted, dose reduction based on false high FT4 reading may happen a lot less often these days because labs so rarely test anything other than TSH.

[Hashihouseman in reply to RedApple]

So you’re advocating fiddling the blood tests? Like you I think consistency in timing of tests is the most import factor because of circadian variables - you simply can’t compare results taken at different ends of the rythym, well you can but only with each other not against any kind of clinical yardstick of unknown timing, like a doctors semi-ignorant guess about where you should be compared to the lab-range.

[RedApple Administrator in reply to Hashihouseman]

Hashihouseman, So you’re advocating fiddling the blood tests?

How can it be 'fiddling' the test? It is recording the lowest level of FT4 that the patient has. If we advised not to take T4 for more than 24 hours before a test, then that could be considered 'fiddling'.

[Hashihouseman in reply to RedApple]

But t4 is ‘supposed’ to be almost inert because of its long half life according to the endos……. My point is that some posts on here advocate skipping or delaying a dose before a blood test to be sure of presenting a low t4/high tsh so the doctors don’t thing they are candies for reduced prescription and yet patients (and clinicians) should be interested in levels more or less any time in their dosing regime cycle. Again as I said that doesn’t hold for t3 replacement which is much much more pesky than t4.

[tattybogle in reply to Hashihouseman]

" My point is that some posts on here advocate skipping or delaying a dose before a blood test to be sure of presenting a low t4/high tsh so the doctors don’t thing they are candies for reduced prescription and yet patients (and clinicians) should be interested in levels more or less any time in their dosing regime cycle."

I agree .... they (and we) should be interested in BOTH the high and the low points of fT4... but until i meet a GP with whom i can have a thoughtful ,intelligent, informed discussion ,about whether an unexpectedly high fT4 level is high due to time of last dose, or high due to my thyroid chucking more out, or high due to some other cause which a mystery to both of us, and how interesting it is that splitting my dose seems to have raised my TSH... then there's no point allowing them to see a fT4 test that might include 'the peak' ... since they might just say "you're overdosed . reduce to X". regardless of what the real reason might be, and regardless of whether the reduction will mess you up.

So 12 or 24 hrs after last dose is at least consistent, and avoids having to try and converse with someone who hasn't even noticed that TSH is circadian and fT4 has a peak after ingestion.

I don't see '24hrs' as 'fiddling it' .. it is 'choosing to test the low point' ... if they don't know enough about it to realise there IS a low point.. that's their problem.. and if we can use their ignorance to our advantage... so be it.

[Hashihouseman in reply to tattybogle]

Allow them to see the high points and then debate with them the reasons?….. Nobody should be changing a prescription on the basis of one TSH snapshot, we should be pushing for more frequent testing until we can see the patterns and trends and responses to changes over time BASED ON TESTS FROM CONSISTENT BLOOD DRAW TIMES…. While they haul us in for so called routine testing at random times to suit appointments diaries they are failing to establish baselines of comparable data and since their prescriptions are based on this flawed data set it’s not surprising it’s a contentious, woefully inexact and yes sometimes unfair and hazardous way of managing this condition in primary care. That said DIY monthly testing for all three TFTs is not so expensive in the scheme of things and after all it’s our condition and the nhs do provide the drugs, even the t3, for free. If we really want to mange it better and not be in so much tension or despair or disappointment with the nhs we can do better ourselves and collect more than enough evidence of our Thyroid function to understand it better ourselves and make unassailable cases for the treatment we know we should have by virtue of all that. When we control our testing we can isolate any variable we want or need to and make sure that the results are comparable and establish the trend data that is so important. As things become stable we can back off the testing frequency and only do routine or SOS checks thereafter.

[tattybogle in reply to Hashihouseman]

I agree with all the point's you make... but. it's one thing for those of us who've been studying the subject, (and observing ourselves) for long enough, to be confident in arguing a case with a GP..... to 'show them the high point and debate the reasons'... but it's an entirely different situation for those who haven't got that level of knowledge /confidence yet. And usually the people who come here for advice have not got that yet . hence why they came here .

I can do it easily now, and either win the argument, or at least, firmly decline to do as i'm asked if they won't listen, or negotiate a compromise to wait for a further test in 6 months etc., and i always have enough spare Levo built up that i could actually do what i want with my dose without running out.

But that was not the case until i'd spent a long while learning the subject in depth. and making my own observations about the symptoms of hundreds of other people., and developed confidence in my own understanding.

If you send people in to argue the case of a high fT4 taken after a dose, when they can't produce the right answer from on the tip of their tongue, when they make a mistake and call something the wrong name, or with misunderstandings about how something works , and without the confidence to withstand being made to feel like a neurotic idiot ... then it's just a lose /lose... They get their dose inappropriately reduced, and they get made to feel like an idiot into the bargain.... and the GP will have got the impression they don't know what they're on about ,and may not change his opinion in future.

So expecting everyone to be able to have that debate with the GP in the early days is not realistic, and some people will never feel able to.

£30 for a cheap TSH/fT4/3 isn't too expensive in the scheme of thing's.. but it's a lot if you're living on £48.32 /week indefinitely, and plenty of people who come here do just that.

So i still think that the best advice to give people initially, is that which allows them to avoid the 'High Peak' debate in the first place.

By the time they are confident /knowledgeable enough to win it , they wont be reading the answers to the "should i take my Levo before the test ?" questions anymore., they'll be planning their own timing based on their needs.

[Hidden in reply to Hashihouseman]

So you’re advocating fiddling the blood tests?

I get your arguement here but to word it like this is deliberately antagonistic.

Regardless, when so many of us have had to fight for so many years, sometimes decades, to even have a hypothyroid diagnosis even considered then yes, we play the system to ensure our health is restored.

Your profile doesn't give any information about your own thyroid journey but your handle suggests you're male, so you've probably had a much easier time with the GP than the rest of us so perhaps you've not had to 'fiddle the tests' to get results.

When you're ignored for years by medics you do what you can to get well. I'm not sure you should be calling judgement on that.

[Hashihouseman in reply to Hidden]

Firstly I was not being antagonist, it’s important debate to further understanding. People should t take it so personally. And second you have no basis for saying that men get an easier ride on this! I mean that’s just sexist nonsense. Men and women face a horrendous battle with the system over this and male hormone complications are no more or less complicated and sensitive than women’s. I have never had an easy ride from a any doctor of any sex. The medics ignore, diminish disparage and ridicule everybody who doesn’t come quietly.

[RedApple Administrator in reply to Hashihouseman]

Hashihouseman ' it’s important debate to further understanding'

Agreed, but it's not us you need to 'debate' this with. We are at the mercy of the medics, who in your own words, 'diminish disparage and ridicule everybody who doesn’t come quietly.' So patients learn to do whatever they have to do, according to individual circumstances.

[Hashihouseman in reply to RedApple]

Of course ‘we’ should debate this we need to better informed and more open minded and more practised in the arguments than the medical professionals.

[TSH110 in reply to Hashihouseman]

Oh haven’t we?m.huffpost.com/us/entry/us_...

[TSH110 in reply to Hashihouseman]

I would beg to differ on the claim that male hormones are just as complicated as female hormones, they are not. The ability to give birth comes with serious hormonal consequences for the female of the species that the male simply does not have to contend with. The low incidence of auto immune disease in men demonstrates that when it comes to hormones men are not the same as women who are far more afflicted.

[Hashihouseman in reply to TSH110]

Until they are…… and then when males are afflicted it’s just as complex and significant as it is for females. This shouldn’t be about seeking to claim who’s the greater victim but recognition that these are human conditions without division. Being female is not a pathological weakness. We are all liable to different difficult challenges by virtue of any genetic variation whether that’s sex, race, blood type whatever…… so we would better all be equally compassionate to the human condition whatever it’s nature.

[TSH110 in reply to Hashihouseman]

I didn’t say thyroid disorder was any less serious for men than it is for women. All of us deserve the best treatment possible, that was never in question.

You simply do not seem to get my point, which is valid.

[NIKEGIRL in reply to Hashihouseman]

When you say people “shouldn’t take it so personally” well it is personal by the very nature of the condition. It affects the very being of a person.

You say “men and women face a horrendous battle with the system”, this should not be the case although I understand it is. The very battle as u call it is responsible for the negative attitudes and experiences felt by many here. Battle is a term used for war. This is a not a war.

You say “the medics ignore, diminish disparage and ridicule everybody who doesn’t come quietly”. You cannot use a statement that uses the word “everybody” as u cannot speak or represent for “everybody”.

I’m not saying that some of your points are not valid but the choice of words is critical.

[Hashihouseman in reply to NIKEGIRL]

Well I can use those words because that’s how I choose to make a point, clearly it’s not a phrase to be taken literally and I’m the first to acknowledge when something isn’t proveable, which that obviously wasn’t but still, you knew what I was getting at. Oh and by taking personally I meant taking offence or getting indignant, I’m not writing anything here to take a pop at anyone and I didn’t, that’s what I meant about taking it personally!

[NIKEGIRL in reply to Hashihouseman]

You are entitled to the freedom of speech. I am entitled to ignore you.

[Hashihouseman in reply to NIKEGIRL]

So why aren’t you!!!!!!

[TSH110 in reply to RedApple]

They should be looking at Free T3 to check it’s optimal, the other two are supporting keeping it at a healthy level, and consider any symptoms the patient has. The whole business is upside down small wonder so many feel disgruntled and not optimally treated for their condition, monitoring is woefully inadequate with cherry picking of the most unhelpful of measures looked at in complete isolation.

[CaroleM-A]

I will write to them

Somewhere else in one of the other guidelines for doctors it says to do the blood draw before taking thyroid meds and fasting, so the guide for patients and the guide for doctors contradict them selves!

I just have to remember where it is!

[tattybogle in reply to CaroleM-A]

This perhaps ?

sps.nhs.uk/wp-content/uploa... RMOC-Liothyronine-guidance-

NHS England Liothyronine guidelines July 2019 clearly state on page 13 that TSH should be between 0.4-1.5 when OPTIMALLY treated with just Levothyroxine

Note that it says test should be in morning BEFORE taking levothyroxine

Also i once found teaching instructions for vets to 'make certain to take time of last dose of Levothyroxine into account' when testing fT4 in hypothyroid horses .. So if it's good enough for horses.. it's good enough for me.

[TSH110 in reply to tattybogle]

It’s a no brainer it’s the NICE guidelines and that page is plain WRONG - end of story. Hypothyroid horses for courses indeed!

[CaroleM-A in reply to tattybogle]

Yes that’s where I saw it!

[Tythrop]

Ffs