Would really like some help please 🙏 - Thyroid UK

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Would really like some help please 🙏

SarahJane1471 profile image
9 Replies

I seem to have hit a brick wall. Could anybody help with ideas about what to do next please.

Dec 2021 nhs

TSH 0.59 (0.3-5.0)

FT4 16.5 (12-22)

FT3 4.6 (3.1-6.8)

Bad symptoms so Levo upped to 100mcgs

Feb 2022 medichecks

TSH 0.04 (0.27-4.2)

FT4 19.1 (12-22)

FT3 5.22 (3.1-6.8)

Felt really well

April 2022 blue horizon

TSH 0.21 (0.27-4.20)

FT4 15.8 (12-22)

FT3 4.24 (3.1-6.8)

Starting to feel bad again

May 2022 nhs

TSH 0.27 (0.3-5.0)

FT4 14.6 (12-22)

FT3 3.9 (3.1-6.8)

Feeling really bad 🤦‍♀️

I’m still on 100mcgs. All tests done as advised here.

Ferritin 117 (13-150) April

Vit D 99 (75-200) April

B12 456 (145-569) April

I’m so tired. With below range TSH I can’t see anyway of getting a Levo increase from my GP.

Any ideas gratefully received

Sarah

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SeasideSusie profile image
SeasideSusieRemembering

SarahJane1471

I’m so tired. With below range TSH I can’t see anyway of getting a Levo increase from my GP

First of all, I would say just refer to NHS tests when discussing with your GP, they often wont accept private tests anyway.

Dec 2021 nhs

TSH 0.59 (0.3-5.0)

FT4 16.5 (12-22)

FT3 4.6 (3.1-6.8)

Bad symptoms so Levo upped to 100mcgs

So with that test FT4 was 45% through range and regardless of a TSH low in range your increase in dose was correct due to your low FT4. Your FT3 was 40.54% through range

May 2022 nhs

TSH 0.27 (0.3-5.0)

FT4 14.6 (12-22)

FT3 3.9 (3.1-6.8)

With this test your FT4 has reduced to just 26% through range and FT3 is now only 21.62% through range

Calculator here: thyroid.dopiaza.org/

So I would list your symptoms to discuss with your GP (pile it on, say how it affects your life, your job, your relationship, etc), point out that your FT4 and FT3 are now considerably lower than your December results and could you please trial an increase in your Levo. If your GP wont give you 25mcg increase then see if he will compromise on 12.5mcg.

Also, it might be worth mentioning that Dr Anthony Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine (the professional publication for doctors):

"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).*"

*He confirmed, during a talk he gave to The Thyroid Trust, that this applies to Free T3 as well as Total T3 and this is when on Levo only. You can hear this at 1 hour 19 mins to 1 hour 21 minutes in this video of that talk youtu.be/HYhYAVyKzhw

You can obtain a copy of the article which contains this quote from ThyroidUK:

tukadmin@thyroiduk.org

print it and highlight Question 6 to show your GP.

Ferritin 117 (13-150) April

Vit D 99 (75-200) April

B12 456 (145-569) April

I didn't see your post a month ago when you posted these Blue Horizon results.

Your ferritin is good and your Vit D is getting close to the level recommended by the Vit D Society and Grassroots Health - 100-150nml/L with a recent blog post on Grassroots Health recommending at least 125nmol/L.

Your B12 at 456pmol/L equates to 617.88pg/ml and according o an extract from the book, "Could it be B12?" by Sally M. Pacholok:

"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".

"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."

You also asked in your previous post about advice regarding your high cortisol level at the time of that test. If you are concerned about this then I would suggest that you do a 24 hour saliva adrenal test that measures both cortisol plus DHEA to get an overall picture, either with Regnerus or Genova Diagnostics:

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

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

SarahJane1471 profile image
SarahJane1471 in reply to SeasideSusie

Thanks SeasideSusie much appreciated.So keep going with B12 and VitD?

And ask for Levo increase.

Saliva test.

👍

Lulu2607 profile image
Lulu2607 in reply to SeasideSusie

Hi SeasideSusie. I agree with everything that's quoted in the advice about dosage etc. Just wondering if I can get the GP (random Dr at the Surgery, usually locum) to listen. 🤔. Will save your post as it's extremely useful thanks.

SarahJane1471 profile image
SarahJane1471 in reply to SeasideSusie

SeasideSusie I had forgotten Dr Tofts quote. Thank you for reminding me 👏

SarahJane1471 profile image
SarahJane1471

I’m the other way round. HRT 5 yrs ago, Levo last July. Thank you for your reply tho’ x

SlowDragon profile image
SlowDragonAdministrator

Are you taking any other medications that might affect TSH

Ft4 and Ft3 suggest you need dose increase in levothyroxine

Approx how much do you weigh in kilo

If GP won’t increase dose levothyroxine Email Thyroid U.K. for list of recommended thyroid specialist endocrinologist and doctors

tukadmin@thyroiduk.org

SarahJane1471 profile image
SarahJane1471 in reply to SlowDragon

Thank you SlowDragon . I should be on 140-150mcgs by weight. I take Sertraline/Pregabalin/HRT gel/zopiclone. All well away from the Levo.

I’m going to try for an increase.

I just can’t understand how FT4 and FT3 can go DOWN since increasing Levo in December. So frustrating.

Two days before the last test I did have some horrifically sad news which affected my PTSD levels and I’m wondering if it’s possible that would effect FT levels 🤷‍♀️. Is that possible?

SlowDragon profile image
SlowDragonAdministrator in reply to SarahJane1471

Possibly, stress can affect……..but as we increase dose levothyroxine the body adjusts and realises what it’s been missing…..and then is ready for next dose increase in levothyroxine

SarahJane1471 profile image
SarahJane1471 in reply to SlowDragon

Thankyou. I’ve managed to get an appointment with my GP of 22 yrs. I’ll take on board all the advice.

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