TSH going wrong way and no ft4 tested. - Thyroid UK

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TSH going wrong way and no ft4 tested.

sobs1962 profile image
13 Replies

I've just had my bloods done again, please see last 2 results below

08/07/22

TSH 1.9 (0.35 - 5.50)

No FT4 result

04/08/22

TSH 5.1(0.35 -5.50)

No FT4 result.

08/07/22

B12 1204ng/L (211- 911ng/L)

04/08/22

B12 978ng/L 211 - 911ng/L)

was taking Igennus super B complex,which states on label that B12 contained is 36000% of NRV,so must take a while for levels to drop to within normal range,however, having googled raised b12 levels, I've discovered that it could be a sign of leukaemia, so needless to say,I'm more than a little worried, as I have no energy and have lost a considerable amount of weight in the last few months,but was sure it was because,as they put it I was "overmedicated" but my dose was halved from 100mcg to 50mcg back in February, for my TSH to go up to 14 and was then increased to 75mcg in April again,it's all a very confusing picture and it's giving me no end of worry as I still have no energy and find myself hit by a wall of exhaustion most nights and struggle to get upstairs to go to bed.

Any thoughts,suggestions or comments gratefully accepted.

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13 Replies
SeasideSusie profile image
SeasideSusieRemembering

sobs1962

so must take a while for levels to drop to within normal range

If you want to know what your body is holding on to then you stop supplementing for 4 months. Testing whilst supplementing will tell you what the amount of B12 you take is achieving.

however, having googled raised b12 levels, I've discovered that it could be a sign of leukaemia, so needless to say,I'm more than a little worried,

High B12 without supplements needs investigating to see what the cause is.

High B12 when taking supplements is caused by taking the supplement.

04/08/22

TSH 5.1(0.35 -5.50)

Suggests undermedication.

Looking back at previous posts, you have Hashi's and this causes swings between being stable/hypo/hyper episodes.

Do you always do tests as we advise, each time:

* Test no later than 9am

* Nothing except water before test

* Last dose of Levo 24 hours before test

* No biotin/B Complex or any supplement containing biotin for 3-7 days before test

If all GP will test is TSH then consider a private test. You don't need antibodies retesting so just go for the basic thyroid panel - TSH, FT4 and FT3 - which is £26.10 with Monitor My Health:

thyroiduk.org/help-and-supp...

sobs1962 profile image
sobs1962 in reply toSeasideSusie

Unfortunately, I completely forgot about the blood test and took my levo at 7am on day of test but explained this to nurse who took my bloods and she put a note on system, have had a lot going on recently and being stressed and worried only makes you forget things, I had a colonoscopy on Wednesday this week and initial report says showing signs of early diverticular disease, so something else to worry about and it appears the NHS, have now decided that testing FT4 is no longer necessary and are going for TSH as the only test necessary, it's way beyond a joke now and as far as b12 is concerned have stopped taking b complex but not for as long as 4 months yet. The NHS don't understand the importance of correct conditions to be met in order to get most accurate thyroid blood test results, it would appear it's only something us thyroid patients understand. As usual it's a constant battle to try to get adequate treatment for thyroid disease, as they(the medical so called experts don't have a clue.

SeasideSusie profile image
SeasideSusieRemembering in reply tosobs1962

sobs1962

Unfortunately, I completely forgot about the blood test and took my levo at 7am on day of test but explained this to nurse who took my bloods and she put a note on system,

It's of no importance if all they are testing is TSH. If FT4 was tested then it's important to take last dose 24 hours before test otherwise the FT4 result would be a false high if taking dose before blood draw.

sobs1962 profile image
sobs1962 in reply toSeasideSusie

Thanks for reply, have a telephone appointment with doctor next week, so will make sure I let her know I'm not happy about my TSH or the fact that ft4 hasn't been tested and see what she has to say about it all, has the NHS really got to the point where they're cutting back so much that they won't do even what are essential thyroid blood tests, quite frankly, it's pathetic.

SlowDragon profile image
SlowDragonAdministrator

With TSH over 2 you’re under medicated

Request 25mcg dose increase in levothyroxine….or perhaps 12.5mcg dose increase

Retest in 6-8 weeks

Request GP retest thyroid levels including Ft4. Vitamin D, folate and ferritin

sobs1962 profile image
sobs1962 in reply toSlowDragon

Thanks for that, will definitely ask for increase, but may refuse as TSH is in range, don't understand why it's gone back up again as have been on increased dose since April, can see me ending up on 100mcg again, but apparently I was "overmedicated" on that dose, my thyroid is so unstable, it's driving me to distraction.

SlowDragon profile image
SlowDragonAdministrator in reply tosobs1962

With Hashimoto’s we need TSH low to reduce the swings in levels

Dose probably should never have been reduced at all. What were the results that caused GP to reduce dose levothyroxine

You’re only over medicated if Ft3 is over range

If you needed dose reduction…..it should have been reduced a tiny amount….eg if on 100mcg daily…..reduce to 100mcg 3 days week and 87.5mcg 4 days a week

Essential to test vitamin D, folate, ferritin and B12 at least once a year

Vitamins likely to drop significantly when levothyroxine dose was reduced inappropriately

Are you on gluten free diet and/or dairy free

sobs1962 profile image
sobs1962 in reply toSlowDragon

I can't remember what the exact numbers were but my ft4 was over 22(10 - 20.0) and I was losing weight rapidly, think it was a knee jerk reaction to be honest and dose should have been reduced not halved. Clearly these doctors have still got a lot to learn and should stop thinking that hypothyroidism is easy to diagnose and simple to treat, as apparently that's what they're taught in medical school but they seem to conveniently forget that autoimmune diseases are very unpredictable and stop thinking they know it all, because clearly they don't seem to know or understand how it works at all.

SlowDragon profile image
SlowDragonAdministrator in reply tosobs1962

Not necessarily over medicated ….could have been a Hashimoto’s flare, temporarily increasing levels

sobs1962 profile image
sobs1962 in reply toSlowDragon

That did occur to me however, doctors don't understand that is how it works and they just panicked, but as the NHS won't test ft3 ,I don't how they can possibly arrive at a diagnosis of hyperthyroidism without ft3 being over range and that's what they were basically saying it was,the whole thing is a huge battle against the ignorance of the so called experts and we thyroid patients are suffering and being incorrectly treated.

SlowDragon profile image
SlowDragonAdministrator in reply tosobs1962

If it happens again…refuse to reduce dose without testing TSH, Ft4 and Ft3…..and all four vitamins

Almost certainly would need to test privately

Levothyroxine needs very fine tuning …never more than 25mcg at any one time

Frequently….just tiny reduction, if necessary ….eg reducing by 12.5mcg twice a week

sobs1962 profile image
sobs1962 in reply toSlowDragon

I'll make sure they can't make me more ill by making them do their jobs properly and not relying on blood test results instead of symptoms to guide their treatment, it's simply unacceptable that their laziness is keeping thyroid patients from having a decent quality of life.

SlowDragon profile image
SlowDragonAdministrator

TSH should be under 2 as an absolute maximum when on levothyroxine

gponline.com/endocrinology-...

NHS England Liothyronine guidelines July 2019

sps.nhs.uk/wp-content/uploa...

Page 9

Test for Deficiency of any of the following: Vitamin B12, Folate, Vitamin D, Iron

See page 13

1. Where symptoms of hypothyroidism persist despite optimal dosage with levothyroxine. (TSH 0.4-1.5mU/L)

Graph showing median TSH in healthy population is 1-1.5

web.archive.org/web/2004060...

Aim is to bring a TSH under 2.5

UK guidance suggests aiming for a TSH of 0.5–2.5

gp-update.co.uk/SM4/Mutable...

from PULSE magazine for GP's... The article is available from ThyroidUK

If you want a copy of the article then email tukadmin@thyroidUK.org

and ask for a copy of the Dr Toft article in Pulse magazine.

The quote is in answer to question 6.

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine:

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance.

But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

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