Feel hypo but tests are 'normal to high T4'

[ShatteredofLee]

Hello, I'm new to this site, and wonder if anybody had advice about finding help outside of going to the GP. My blood test from the GP only tested T4, which apears if anything high. However I've been on levothyroxine for 28 years now, and feel progressively worse on it. ALL my symptoms are hypo: tired, fatigued, dry hair/eyes/skin, low temperature, slow heart beat (very). After reading some posts here, I suspect I can no longer convert T4 to T3 very well. If anything my GP is going to recommend dropping my dose, which will make me feel worse if I've got nothing else in place. How do I start the process of finding a friendly endochrinologist who's willing to explore other options to T4?

[ShatteredofLee]

Hi Scrumbler, thanks for getting back. The GP has them. I could ask to see them (why can't they just give them to you?). I'll post them when I have them.

[greygoose in reply to ShatteredofLee]

Don't ask the doctor. They don't like you to know too much - you might prove them wrong! lol Ask the receptionist for a print-out - it's your legal right to have one!

[SlowDragon Administrator]

First step is to get hold of results from GP

Frequently they only test TSH, which is completely inadequate

How much levothyroxine are you currently taking

Do you always get same brand of levothyroxine

Many people find different brands are not interchangeable

What vitamin supplements are you currently taking

Thyroid testing should ALWAYS be done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

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

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

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

About 90% of primary hypothyroidism is autoimmune thyroid disease

Ask GP to test vitamin levels (and thyroid antibodies if never been tested)

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)

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 antibodies and vitamins

medichecks.com/products/adv...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

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

[ShatteredofLee in reply to SlowDragon]

Wow, thank you for all this great info. I know I’m low on vit D and Iron, have been for years. But it gives me a good starting point to start taking vitamins. I know from looking at the form prior to my blood test that there’s nothing on there about T3 ☹️

[SlowDragon Administrator in reply to ShatteredofLee]

Come back with new post once you get most recent vitamin results

Important to supplement to maintain OPTIMAL vitamin levels

What vitamin supplements are you currently taking

Important to stop taking any supplements that contain biotin a week before all blood tests

If you took levothyroxine before test ...that's a false high FT4 result

[shaws Administrator]

I'm sorry you're not feeling so good. Do you allow a gap of 24 hours between last dose of levo and the test and is blood drawn at the very earliest possible?

Do you follow this method when getting a test for thyroid hormones:-

1. Make the earliest possible appointment.

2. It is a fasting test - so don't eat but you can drink water.

3. Allow a gap of 24 hours between last dose and test and take afterwards.

4. Ask GP to test B12, Vit D, iron, ferritin and folate and aslo Free T4 and Free T3 (probably wont do the last two which you can have privately if you wish).

Always get a print-out of your results, with the ranges, and post if you have queries.

[ShatteredofLee in reply to shaws]

I wasn’t told it was a fasting test. I wish the dr had said. I also took my dose an HOUR before the test! I’ve got an appointment in three weeks to discuss results (which he knows and I don’t), and I suspect he will say they’re fine. Still thank you for letting me know, I’ll be better prepared for the next test,

[shaws Administrator in reply to ShatteredofLee]

Doctors are unaware that it is a fasting test. It is known by those who have hypo but you will increase in knowledge like many members who learn more on this forum than the 'professionals'.

It's how I learned and it's good that we get more knowledgeable.

You will be prepared for the next blood test. Also doctors seem to be poorly trained in dysfunctional thyroid glands unless they themselves have the condition. Always get a copy of your results, with the ranges. Ranges are important as labs differ and it makes it easier for members to respond.

The professionals are also seemingly unaware that TSH is highest early a.m. and drops throughout the day.

Maybe get a private test following the procedure above i.e. early blood test etc as your doctor (going by the results above) I doubt he'll increase your dose'. It is a private test and it is done at home. Make sure you ae well-hydrated a couple of days before if you decide to do so. A Full Test is:- TSH, T4, T3, Free T4, Free T3 and thyroid antibodies..

thyroiduk.org/

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

Always make sure you are well-hydrated for blood tests.

Also on you own ;page' copy and paste some of your hypo information into it. Members will then be able to read it if they wish and you dont have to repeat often.

[ShatteredofLee]

Many thanks