Please help me to take control of my life - 9 years+ since diagnosed with underactive thyroid

[paze]

Hi, I'm not familiar with the etiquette on this site so forgive me if I get anything wrong.

As the title says I've been diagnosed with underactive thyroid for over 9 years and I've blindly followed my GPs and am on levothyroxine 100mcg. Stumbling on this website and reading some of the posts I realise how utterly ignorant I am about my own health condition. I want to take control of my health. Please can you advise me what steps I need to take to do this. I'll chat to my GP about blood tests - although I'm pretty sure I've never seen T3 on there. Please can you let me know what I should request I want to be tested for.

Thank you.

[shaws Administrator]

Welcome to our forum paze.

On your personal page, you can copy your above details into it so that, in future, members can read your history without you having to repeat.

This is the method when getting a blood test for thyroid hormones:-

Always make the earliest possible time for blood draw.

It is a fasting test but you can drink water.

Do not take thyroid hormones before it but take afterwards. with one glass of water.

Wait an hour before eating as food can interfere with the uptake of the hormones.

Also request B12, Vit D, iron, ferritin and folate to be tested.

Always get a print-out of your results, with the ranges for your own records. You can post them if you have a query.

[SlowDragon Administrator]

Are you based in the U.K.?

Do you always get same brand levothyroxine at each prescription

First thing is, do you have any actual blood test results? if not will need to get hold of copies.

You are legally entitled to printed copies of your blood test results and ranges.

The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results

UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

Link re access

healthunlocked.com/thyroidu...

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

Important to see exactly what has been tested and equally important what hasn’t been tested yet

Far too often only TSH is tested and is completely inadequate

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)

About 90% of primary hypothyroidism is autoimmune

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis.

Both are autoimmune and generally called Hashimoto’s.

In U.K. medics never call it Hashimoto’s, just autoimmune thyroid disease (and they usually ignore the autoimmune aspect)

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water 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

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...

If you can get GP to test vitamins and antibodies 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/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

First step….get copies of all your results from GP

Next get further testing

Come back with new post once you get results from GP and/or further testing results

[paze in reply to SlowDragon]

Thank you Shaws and Slowdragon. I'll do all that you both mentioned. I read somewhere on this forum not to take levothyroxine for 24hours before the test so I'll do that too. This is assuming I even get a repeat blood test!I'm so excited to finally be in control of my health.

[SlowDragon Administrator in reply to paze]

You will see by reading this forum….thousands upon thousands of U.K. thyroid patients are forced to test privately to make progress

How long since GP last tested

Medichecks results

healthunlocked.com/search/p...

Blue Horizon results

healthunlocked.com/search/p...

Thriva results

healthunlocked.com/search/p...

[shaws Administrator in reply to paze]

Also get the earliest possible blood draw and it is a fasting test (you can drink water) - even if you have to make it weeks ahead and ensure you are well-hydrated a couple of days before. The reason being that the TSH (thyroid stimulating hormone) reduces during the day. Most doctors only seem to look at the TSH (thyroid stimulating hormone) as I'm positive that many doctors know nothing at all (that's through my own experience with a GP in the surgery). I told him he was wrong.