Help with blood results please

[Molly139]

Hi, In July I had a private test for thyroid and vitamins as I’d been feeling unwell for years. The results showed I was over medicated. I’m hypo and at the time was taking 125mcg of levothyroxine. Prior to this test numerous visits to the doctor and A&E got me nowhere! I took the Private test results to my GP and he reduced me to 100mcg and requested bloods mainly to rule out coeliac disease. At my appointment for these bloods the nurse said I was due a thyroid test so while I had the needle in she’d do that too. The thyroid results are, unfortunately, after breakfast and after 100mcg of levo. GP rang today and has reduced me to 75mcg. I’ve been feeling like a normal person on 100mcg and supplementing with Vit D, K2 and magnesium so I’m really scared to drop again in case it starts the symptoms again palpitations, anxiety etc etc etc

[SeasideSusie Remembering]

Molly139

The thyroid results are, unfortunately, after breakfast and after 100mcg of levo. GP rang today and has reduced me to 75mcg. I’ve been feeling like a normal person on 100mcg

In your position I would contact the doctor and say that as you had taken 100mcg Levo before the test your results will be inaccurate, it will be showing a high FT4 due to Levo peaking in the blood 2-4 hours after ingestion. You wish to stay on your 100mcg dose and, if necessary, retest before taking your daily dose of Levo.

This happened to me when a surprise test was sprung on me. When the results came back over range I explained that it was high due to taking my dose of Levo, I was retested and it came back within range and everyone was happy.

At my appointment for these bloods the nurse said I was due a thyroid test so while I had the needle in she’d do that too.

You can always refuse you know, they have to have your informed consent for any medical procedure. If you don't say no then they assume consent. If ever that happens again just say you've taken your dose of Levo and you prefer to make another appointment to have blood drawn before you take your dose. I have got into the habit of asking the nurse what tests have been requested by the GP, if she says thyroid is included and I don't want it done at that time then I just say "No, not thyroid today" and give the reason. If they go ahead after you have refused the test they are breaching medical ethics and your human rights.

[Molly139 in reply to SeasideSusie]

Thank you, I’ll message him tomorrow. I’ve been taking 100mcg for 20 days now when would it be best to test again?

Also, do you know what test covers coeliac disease? It says tTG-Iga online but I can’t see it on my report

Thank you

[SeasideSusie Remembering in reply to Molly139]

Molly139

We always say retest 6-8 weeks after a dose change, no sooner.

I'm not good with gut-related stuff and what the tests are called, SlowDragon should be able to help if she is around.

[SlowDragon Administrator in reply to Molly139]

That’s far too soon to retest

Refuse to drop dose and get FULL Thyroid and vitamin testing after 6-8 weeks on 100mcg levothyroxine

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

Also EXTREMELY important to test vitamin D, folate, ferritin and B12

What vitamin supplements are you currently taking?

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Presumably you have Hashimoto’s?

Ask GP to test vitamin levels or test privately at 6-8 weeks

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 .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins

List of private testing options

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

Medichecks Thyroid plus vitamins including folate (private blood draw required)

medichecks.com/products/thy...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

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 if go on thyroid uk for code

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

monitormyhealth.org.uk/thyr...

Medichecks - JUST vitamin testing including folate - DIY finger prick test

medichecks.com/products/nut...

Medichecks often have special offers, if order on Thursdays

[SlowDragon Administrator]

Looking at previous post you clearly have Hashimoto’s

healthunlocked.com/thyroidu...

Chase up coeliac blood test result...not on there

Keep eating high gluten if testing hasn’t been done yet

healthcheckshop.co.uk/store...?

Assuming test is negative you can immediately go on strictly gluten free diet

(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)

[Molly139 in reply to SlowDragon]

Unbelievable!!!! GP said I needed testing for coeliac and that’s why I was booked in for bloods. I’ve just started gluten free today, so that will have to stop. Back to the GPs I go

[Molly139 in reply to SlowDragon]

I’ve had my test result for coeliac and it’s negative so I’m continuing with a strict gluten free diet.

So after speaking with my GP he wants me to reduce to 75mcg based on my TSH. I’m really getting confused now because my first TSH was 0.02(0.27-4.2) on 125mcg and I reduced to 100mcg TSH 0.09 same range. Surely this is an improvement so if I lower to 75mcg TSH will go up?

[SlowDragon Administrator in reply to Molly139]

Never reduce dose based just on TSH and Ft4

ALWAYS do all thyroid testing as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

Essential to test vitamin D, folate, ferritin and B12

Come back with new post once you get FULL Results

[SlowDragon Administrator in reply to Molly139]

Getting vitamin D, folate and B12 tested is next step

Plus Dio2 gene test can help persuade Endo to prescribe T3 on nhs - assuming you test positive

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

Email Dionne at Thyroid UK for list of recommend thyroid specialist endocrinologists who will prescribe T3

[e-mail]

Likely to need to go private initially unless going to wait about a year forNHS consultant