Dreading Blood Test Aaaaaah. : I've just been for... - Thyroid UK

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Dreading Blood Test Aaaaaah.

Sparklingsunshine profile image

I've just been for my 3 monthly B12 jab and whilst I was there the nurse told me I was due thyroid bloods on April 1st. I honestly didn't know they were due and no one told me, I've had quite a lot of contact with my surgery recently for various things. I thought someone might have mentioned it.

But the crux of the matter is when I privately tested in December my TSH was 0.03. But both frees were well in range and I don't feel over medicated.

I was hoping to stay under the radar tbh as I know if these results are replicated by the NHS test my GP will freak out and immediately reduce my Levo. I'm hoping to stall as long as possible but just wondering if I should reduce Levo myself to try and get TSH up a bit. I'm on 125mcg of Levo currently. Any advice please.

My results 20.12.21 were

TSH 0.03 (0.27 to 4.2)

FT 4 17.1 (12-22)

FT3 4.7 (3.1-6.8)

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Sparklingsunshine
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23 Replies
Buddy195 profile image
Buddy195Administrator

If you have a knowledgeable GP, up to date with thyroid medication. they will be ok with a suppressed TSH. as Ft3 and Ft4 are well within range. Alas, as many of us know, enlightened GPS are often in short supply!

Remember you can refuse any Levo reduction / ask to see an endocrinologist.

Also remember to book the first morning blood draw at your surgery and not take Levo dose until after the test.

How are you feeling on your current Levo dose?

Sparklingsunshine profile image
Sparklingsunshine in reply toBuddy195

Hi

Yeah I feel ok, certainly no signs of over medication. I dislike my new GP so have no faith that she will be one of these mythical enlightened ones you talk about. And Endos at my hospital are diabetes specialists so no point is asking for a referral to them.

greygoose profile image
greygoose

Just don't go. They might forget about you. If anyone says anything, pretend you clean forgot! Oh, my! What a silly girl! lol

Your TSH is very low compared to your Frees. They're only mid-range. But forget about reducing your levo to try and raise your TSH. Very unlikely that would work because you haven't got time. The TSH could take weeks to adjust - or even months.

Sparklingsunshine profile image
Sparklingsunshine in reply togreygoose

Hi

Is there a reason why my TSH is so low, I must admit I was a bit shocked when I saw it in December, bearing in mind it was over 6 in October. If I need to reduce Levo to try and even my results up a bit then I'm happy to do that.

Just don't want meddling GP to come along, reduce Levo, announce hurrah I'm in range and leave me feeling like crap. I must admit my results baffle me rather.

greygoose profile image
greygoose in reply toSparklingsunshine

What time of day was the blood draw for those results from 20.12.21?

If you reduce your dose to 'even up your results' - although I can't imagine why you would want to do that - your TSH would eventually rise - but might take a long time, and you might have to reduce your dose A LOT! - your FT4 and FT3 will drop and you risk becoming ill again.

The thing is, the TSH isn't even that important - it's certainly not the most important number, that's the FT3. But doctors have this idea that the TSH 'tells them all they need to know'. It doesn't. In fact, once it's below 1, it doesn't tell you much at all. But they insist on dosing by it and keeping their patients sick.

I understand you don't want the GP meddling - no-one does! That's why I self treat. But, it's very difficult to avoid, unless you can convince them that it's really not necessary.

Sparklingsunshine profile image
Sparklingsunshine in reply togreygoose

Hi

I took it around 8.30 am, fasting and Levo 24 hours previous, as per instructions. As I get my Levo via NHS I can't really avoid them lol.

greygoose profile image
greygoose in reply toSparklingsunshine

Yes, I know. So, you're just going to have to fight your corner, explaining that whilst your TSH is low, your Frees are only mid-range, and they are more important than the TSH.

Sparklingsunshine profile image
Sparklingsunshine in reply togreygoose

Is there a reason why TSH is suppressed when the frees are only mid range? Does it mean poor conversion or something?

greygoose profile image
greygoose in reply toSparklingsunshine

More likely to mean that the pituitary isn't running on all cylinders. But doctors tend to think that everyone has a perfectly functioning pituitary, for some unknown reason. But, I say, if thyroids can fail, so can pituitaries.

SlowDragon profile image
SlowDragonAdministrator

Frequently messing about with dose just makes TSH drop lower

Suggest you test yourself see where results are

After all GP only likely to test TSH

When did you last test vitamin levels

all thyroid blood tests early morning, ideally before 9am last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/

If NHS test does come back “too low” according to GP

You can show your full test and that Ft4 and Ft3 are well within range

If GP says " I have to reduce your dose because the guidelines say i can't let you have a below range TSH" .....

The first paragraph in the NICE (NHS) Thyroid Disease, Assessment and Management guidelines says :

nice.org.uk/guidance/ng145

"Your responsibility

The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian. "

Sparklingsunshine profile image
Sparklingsunshine in reply toSlowDragon

Hi

I had folate and full iron panel done in October 2021, folate was low so on advice here I supplement with methylfolate. I get B12 jabs anyway as I often mentioned lol so GP won't test that, they assume once on jabs you are OK. I also take a vitamin B complex.

I do supplement vitamin D and have done so for years, I used to get supplements on the NHS but these were withdrawn by most CCG's and patients told to buy their own. One of many cutbacks. My ferritin was surprisingly good, I can only assume menopause has prevented anaemia.

tattybogle profile image
tattybogle

i'm with Grey goose .. just 'forget' to book a blood test ... they might not actually 'do' anything about it for a long while ~ i often get repeat prescriptions that say 'medication review due... next month ' ....' medication review overdue' .... 'medication review overdue' .... and then nothing actually happens and the next prescription goes back to saying 'medication review due... next year sometime'

OK ...sooner or later you'll have to give them some blood , once somebody gets a bee in their bonnet about it... but chances are the nurse for the b12 jab was just reading off the computer... doesn't mean anybody else will go out of their way to contact you about it just yet...hopefully they're all far too busy :)

Sparklingsunshine profile image
Sparklingsunshine in reply totattybogle

Hi

You'd think so but they've been bugging my poor hubby to provide a up-to-date blood pressure reading for ages now. My husband has no history of blood pressure, has never taken any medication for it, in fact takes no regular medication whatsoever.

If anything his blood pressure has always been very slightly low. Me on the other hand, I take list of medication as long as your arm, including HRT, which if memory serves, means blood pressure needs checking periodically. And yet not a dickie bird.

Its just bizarre. They assume once you're over 40 you just happen to have a blood pressure machine to hand doing nothing that you can use. Unless you have blood pressure concerns its not very likely.

rick2525 profile image
rick2525 in reply toSparklingsunshine

Hi. I've just read your blog with interest. My advice would be if you are feeling well on your current meds leave alone. "Why spoil a good thing" Regarding the NHS nowadays particularly at GP surgeries they are "driven" and directed by computers telling them what patients should and shouldn't have done have done. It is no more than a tick box exercise to them because the "system" is highlighting you. We live in a power society very much driven by robots who sadly cannot think outside the box

MirandaIV profile image
MirandaIV

I just ignore the requests and they seem to go away. I’ve been doing that for years.

StitchFairy profile image
StitchFairy in reply toMirandaIV

Some surgeries say they won't renew your prescription unless you have the routine test. Are they really allowed to do that for an essential med such as thyroid hormone?

tattybogle profile image
tattybogle in reply toStitchFairy

I don't think it's 'some surgeries' , as such . i think it's done on a more 'individual circumstances'/ individual GP' basis. In my experience ,if results are stable at levels the GP has previously been happy with , or at least 'prepared to allow' . then often these notifications are just annual review reminders , automatically generated and they do just 'go away if ignored'. and nothing further happens , until the next automatically generated 'annual review prompt' adds another notification next year.

My reminders have disappeared with no problem even when previous TSH result on file was 0.05 and fT4 highish, because GP was aware that was my 'usual ' level, and had been for years, on stable dose.

But in different circumstances . ie. GP notices the previous few TSH level's have concerned them / GP notices patient hasn't been in for annual test for a couple of years / GP has some suspicion patient is self medicating/ overmedicated etc .. then in those cases the GP who gets the prescription to renew will say they won't keep renewing indefinitely without seeing some bloods fairly soon.

Sparklingsunshine profile image
Sparklingsunshine in reply totattybogle

I'm wondering g if I might get a stay of execution as I had a recent meds review with the surgery pharmacist and he was more focused on my asthma Inhaler use. He barely mentioned my Levo and all my repeat meds got passed through. So in view of that maybe the GP won't flag it up. Here's hoping.

SarahJane1471 profile image
SarahJane1471

Ignore it! All GP practices are so overwhelmed at the moment they won’t chase it up 🤷‍♀️

Sparklingsunshine profile image
Sparklingsunshine in reply toSarahJane1471

Hi

I've never wanted to be ignored so badly 😀

TickTockTock profile image
TickTockTock

I was able to raise my TSH by splitting my medication into two doses, one right after I woke up and one right before I slept. I take them sublingually to avoid chances of non-absorption. By doing that I also eventually was able to lower my dose quite a bit and still feel good.

tattybogle profile image
tattybogle in reply toTickTockTock

Funny you should say that about splitting Levo raising your TSH. I strongly suspect it has had the same effect for me, but don't have any conclusive evidence cos i haven't done further tests 'properly' to confirm .... and i haven't wanted to revert to single doses to see if it would then go down again... cos i'm enjoying this unusual break from the doctor disliking my TSH results .

But my TSH was always between 0.05 - 0.6 for many many years no matter where my fT4 levels were ,.. usually between 75%-130% .

Since i 've been splitting my Levo into 2 doses am/ bedtime my TSH came back at 1.9.. which astonished me .. and my fT4 is still over range. i had previously lowered the dose very slightly from 125 to 112.5mcg, but this was done a year before the TSH rose, and even at a lower dose of 100mcg for a few months TSH was still only 0.5. but on raising back to 112.5mcg and splitting the dose am/pm ... the next TSH result was 1.9

On my results, this it is a MUCH bigger effect on TSH than would have thought possible or logical just from splitting Levo ... but i didn't change anything else to bring it about.

Of course it could be totally unrelated , but it's interesting to hear other people noticing the same effect.

I'm not convinced that dissolving them in the mouth is any guarantee of avoiding poor absorption ...as i think the dissolved tablet will still need to get down to into the gut to be absorbed .. because the iodine molecules from Levo are just too big to be absorbed via the the gums , if i remember it right.. can't remember where i read that now though ,sorry

wellness1 profile image
wellness1 in reply totattybogle

I find this fascinating. I've been tempted to try it, but I like to have the option of taking other things at bedtime and there are only so many hours-away-from-food-opportunities in the day. Hmmm...maybe that tells me something. ;)

I wonder if it suits people who get the recommended 8 hours sleep better than those of us who, unfortunately, do not.

I also wonder if it would have that effect for someone on combination therapy.

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