latest results

[Bigthensmallthenbig]

for the collective wisdom please:

Radio iodine ablation 13/12/19

21/11/23

Mono treatment T4 @ 175mcg

TSH below range

FT3 5.23 (3.5-6.8)

FT4 16.8 (7.8-18)

Doctor reduced dose to 150! Without consultation

My 2 cents: TSH not relevant still only mid range FT3. So need combined T3/T4 treatment. Time to find an endo.

Happy to be wrong.

Thanks all

[SlowDragon Administrator]

First of all REFUSE to reduce dose and request current dose is reinstated immediately while you organise a consultation with endocrinologist of your choice

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. "

Was test done as recommended early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

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

Assuming yes

FT4: 16.8 pmol/l (Range 7.8 - 18)

Ft4 currently 88.24% through range

FT3: 5.23 pmol/l (Range 3.5 - 6.8)

But Ft3 only 52.42% through range

So poor conversion rate

When were vitamin D, folate, ferritin and B12 last tested

What vitamin supplements are you taking

As you have Graves’ disease are you on gluten free diet

[Bigthensmallthenbig in reply to SlowDragon]

Thank you

Tests carried out in accordance with the guidelines you set out in your reply. I am almost gluten free. Very rare bread etc.

I will push back on the dose and I’m on a broad range of supplements which I can’t remember totally now.

No other tests were done.

Oh and by the way: when I last tried to explain “% within range” to my GP he just said “I don’t recognise the parameters you are quoting”.

[SlowDragon Administrator in reply to Bigthensmallthenbig]

Test vitamin levels yourself privately as next step

You need all four vitamins at OPTIMAL levels before considering adding T3

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...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

thyroiduk.org/testing/thyro...

Tips on how to do DIY finger prick test

See detailed reply by SeasideSusie

healthunlocked.com/thyroidu...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

I am almost gluten free. Very rare bread etc.

there’s no point being almost GF. It takes 3-4 months for gut to recover each time you eat gluten

[Bigthensmallthenbig in reply to SlowDragon]

On another point: would you agree that it’s time to go for combined treatment through the list of endos? And surely in response to the GP: as my thyroid is “dead” production of TSH might well be low or non existent. It’s not in the loop to respond to stimulus anymore.

[SlowDragon Administrator in reply to Bigthensmallthenbig]

TSH is made by pituitary

High Ft4 will suppress TSH

[pennyannie]

Hey there again :

Yes - I think you're got as far as your going to get within primary care and refuse the dose reduction and try and get your dose reinstated.

If still symptomatic the next step is a referral to an NHS endocrinogist - and I believe, if the first referral is a no - you are in your rights to ask for a second opinion of your choice on the NHS.

Do you have the list of sympathetic endo and thyroid consultants NHS and Private that Thyroid UK hold -

if not just emal admin @ thyroiduk.org and see who is on there - many still do video consults - one benefit of lockdown - so distance doesn't need to be the issue.

Have you checked your your CCG/ICB area and aware of how supportive, or not, your catchment area is -

if not - check out on openprescribing.net then go into analyse and see be surgery and area how supportive your area is -

use Armour as the drug for NDT and Liothyronine as the T3 drug.

For reference a 25 mg dose reduction in T4 for me resulted after 2 years with a similar in low suppressed TSH - just scraping into the bottom of the range.

but my T3 that had been at around 66% through the range was now down at 25% through the range and I had to pay for my own T3./T4 blood tests to find out why I was so ill and told i was very lucjt to have any T3 at all and my symptoms ' something else ' as my TSH was now just coming into the range but told I was still over medicated by doctor and hospital endo - so now I self medicated.

[Bigthensmallthenbig in reply to pennyannie]

Thanks. I think it’s the endo list for me now. I’ve got enough results and my gp will refer me to any nhs endo who will prescribe t3 at least. I will pay if need be.