Advice on blood testing: I am extremely... - Thyroid UK

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Advice on blood testing

Bambam22 profile image
9 Replies

I am extremely frustrated and need help to deal with GP.I have started showing symptoms again, fatigue, tiredness and increased brain fog.

My recent medichecks results (previously posted) has shown a TSH value above 2.. whilst this is only a tiny piece of the picture unfortunately GP is requesting a blood test.... clearly only testing TSH.

I have been offered a blood test for 3.20pm tomorrow... i have told the receptionist that guidance informs testing before 9.00am.

I have been told it doesn't matter and she has never heard of this before. In any event the phlebotomist does work before 9.30 😒

From the little knowledge I have I tried to explain that the result would not reflect an accurate picture.

Please can you wonderful people please arm me with something to enable a reasonable discussion.

What impact would 3.30pm blood have on my TSH?

Should I still delay taking levothyroxine?

I am so frustrated 😞

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Bambam22
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9 Replies
SeasideSusie profile image
SeasideSusieRemembering

Bambam22

What impact would 3.30pm blood have on my TSH?

It will be considerably lower than a 9am blood draw, plus you will have eaten and may have drunk tea, coffee, etc, and this will also lower TSH.

Here is a graph of the circadian rhythm of TSH in a healthy thyroid which shows it is highest at around midnight to about 4am then lowers then climbs again with the next highest at 9am, then it lowers throughout the day with the lowest point being around 1pm. At 3.30pm it will have started to climb again but doesn't reach the same level as 9am.

If your GP adjusts dose by only looking at TSH then you should point out that TSH is a pituitary hormone which is a signal to the thyroid. The actual thyroid hormones are T4 and T3 and it's the FT4 and FT3 which tells us our thyroid status. TSH is a tool for diagnosis but doesn't have much use once diagnosed and on replacement thyroid hormone, dose should be adjusted according to any symptoms we have and FT4 and FT3 levels (with FT3 being the most important result as T3 is the active hormone that every cell in our bodies need - low T3 causes symptoms)

TSH
Bambam22 profile image
Bambam22 in reply to SeasideSusie

Many thanks.... the constant battle with GP's is soul destroying.Experience tells me I have my bloods taken, result shows TSH in range.. i get a text telling me no change in medication. Trying to speak with the GP is mission impossible.

It seems like a pointless exercise.

SeasideSusie is there anything else in NICE or thyroid foundation literature?

SeasideSusie profile image
SeasideSusieRemembering in reply to Bambam22

SeasideSusie is there anything else in NICE or thyroid foundation literature?

Not that I know of. Maybe someone else does or maybe you can do some research, I'm not in a position to do that myself at the moment. If you do find anything then do post it as it would help others.

I have the problem of a TSH obsessed GP who wont discuss FT4/FT3 - in fact I think she may have upped and left our surgery so I may have an opportunity at some point to discuss it with a newer, younger GP. But just as the original GP kept banging on about TSH being suppressed and I am overmedicated, I just kept banging on about looking at the FT4 and the FT3 because they are well within range so I can't be overmedicated. And I just do my own thing - Levo, self sourced T3, regular private tests to keep an eye on my levels, and ignore the GP when they want to reduce my Levo dose.

Jaydee1507 profile image
Jaydee1507Administrator

If one GP is being tricky then try a different one at the same practice. There is a pinned post about getting TSH under 1.

For blood test timing tell them you work and can only do certain times. Wait a week or 2 if necessary.

I know all this is a total pain but keep plugging away at it and don't back down.

Bambam22 profile image
Bambam22

You are both amazing and have just sparked my determination..thank you x

SlowDragon profile image
SlowDragonAdministrator

Just testing TSH completely inadequate anyway

Thousands of members just test privately

Test including vitamin D, folate, ferritin and B12 once year minimum

Do you always get same brand levothyroxine at each prescription

What vitamin supplements are you currently taking

Personally I would reschedule test or test privately

all thyroid blood tests early morning, ideally just before 9am and 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

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins then 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/

Monitor My Health also now offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65 

(Doesn’t include thyroid antibodies) 

monitormyhealth.org.uk/full...

10% off code here 

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

Only do private testing early Monday or Tuesday morning. 

Watch out for postal strikes, probably want to pay for guaranteed 24 hours delivery 

Bambam22 profile image
Bambam22

Slowdragon having found your forum i do test privately every 8-12 weeks however my GP chooses to be dismissive of the test results. My associated vitamins B12, folate and D3 are greatly improved, ferritin is on the way up but is a little stubborn. I am pleased with those result and have this forum to be thankful of the guidance. I now only supplement with D3 oral spray and thorns B complex.My levothyroxine brand has remained consistent.

I will take your advice and reschedule as tomorrow test is a waste of time to achieve what I need which is an increase in my levothyroxine.

tattybogle profile image
tattybogle

Hi Bambam22

This post contains references which are helpful if wanting to get GP to agree to TSH between 0.4 and 2/2.5 (some are taken from GP 'update' sources , including one by NHS specialist registrars in cardiology and endocrinology ) healthunlocked.com/thyroidu... my-list-of-references-recommending-gp-s-keep-tsh-lower

also contains a reference lower down in it's replies re. testing early a.m. / before taking Levo .... sadly NHS don't have anything at all written in their guidelines about this , and they will insist time of day doesn't matter for thyroid tests and will try and save those blood test slots for tests that do need a 9am test ( in their opinion). ~ often the only way to get 'first thing in the morning' thyroid tests is to be "sadly unable to attend an appointment later than 9.30 am due to work commitments," and say you'll wait a few weeks until they can find you a slot one at that time

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

For information to help with conversations with GP's when TSH is lower than 0.5 ~See my reply to this post (3rd reply down ) healthunlocked.com/thyroidu... feeling-fine-but-tsh-is-low

it contains a link to the paper about patients on levo that N/I/C/E guidelines use as evidence of risks of low TSH ,, however N/I/C/E failed to point out that the paper actually says the risks increased when TSH is below 0.04 , but "low but not supressed" TSH of 0.04 to 0.4 DID NOT have increased risks.

It also contains a link to a recent paper showing that long term supressed TSH on levo did not have a significant effect on bone density .

also links to useful discussion in the subject of low TSH / Risk vs Quality of Life

Bambam22 profile image
Bambam22 in reply to tattybogle

Thank you hugely for your reply. Amazing I do feel confident armed with your advice.

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