Thyroid question

[Bombletwig]

Hi i'm new to the forum and have a quick question.

I had my thyroid totally removed some years ago, is checking my TSH level now a waste of time and just my T4 level matters?

[SlowDragon Administrator]

Welcome to the forum

Most important question is how do you feel.

Do you feel well?

Just testing TSH and Ft4 is completely inadequate

Essential to regularly test TSH, Ft4 And Ft3

On levothyroxine we need OPTIMAL vitamin levels to help get best conversion of Ft4 to Ft3 possible

What was reason for thyroidectomy

How much levothyroxine are you currently taking

Do you always get same brand levothyroxine at each prescription

Many people find different brands are not interchangeable

For full Thyroid evaluation you need TSH, FT4 and FT3 tested

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

Low vitamin levels are extremely common, especially if under medicated

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

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins 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

Link about thyroid blood tests

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

[jimh111]

Checking TSH, fT3 and fT4 (all three) would be useful although signs and symptoms are more important.

[Bombletwig]

I had my thyroid removed due to Graves disease, i was massively overactive. Since then ive never felt 100% and my tsh level has fluctuated wildly over the years which the doctors can't explain. I take my Levo same time every day and am currently on 200mg per day. Whenever i have had my blood done in the past they only ever tested Tsh but this last test they also did t4 which was 15.6.

The lady who rang me from the doctors told me this time that she didnt know why they bothered testing my tsh as now i had no thyroid it would be like sending a letter with no address on.

This is the first time anyone has said this about tsh in about 7 years so im guessing she is completely wrong? Even the specialists at the hospital adjusted my dose from my tsh level.

As it happens i dont actually feel too bad and would be loathe to change my dosage at the mo but im a little concerned about what this woman has said re tsh levels.

[helvella Administrator Thyroid UK in reply to Bombletwig]

The TSH that you are producing cannot change the amount of thyroid hormone - if you have no thyroid tissue. That is, I think, the letter with no address reference.

But the TSH will rise and fall depending on how much thyroid hormone you are taking. Though we should not expect it to behave exactly as it would in someone with a thyroid.

In particular, TSH levels might never fully recover from severe hyperthyroidism, and can take a long time to rise from being suppressed.

More importantly, though, TSH alone is never sufficient to manage dosing. Many here regard Free T4 and Free T3 as being far more important for dose management. As well as symptoms - as jimh111 said.

Your FT4 being 15.6 is only part of the picture. You need to know the reference interval (range) as well.

[Bombletwig]

Thanks for the replies by the way

[helvella Administrator Thyroid UK in reply to Bombletwig]

Meant to add, TSH can affect the rate at which you convert T4 into T3!

[pennyannie]

Hello Bombletwig and welcome to the forum :

Well the TSH is the least reliable of all the thyroid tests.

The TSH test was actually introduced as a diagnostic tool to help identify a patient suffering with hypothyroid and was never intended to be used once the patient was on any form of thyroid hormone replacement.

Since you haven't a thyroid gland and especially since you have Graves Disease the TSH is an even more unreliable measure of anything.

So what blood test is this doctor wishing to run ?

Ideally a T3 and T4 with a TSH alongside - a test many of us have been refused on the NHS.

Sadly though in primary care, the yearly thyroid function test is just that, a TSH, and maybe a T4, and a total waste of time and money if you, the patient are not well, as you'll likely be told whatever ails you, it isn't thyroid and suggested you have some anti depressants, implying it's all in your head.

A fully functioning working thyroid would be supporting you daily with trace elements of T1. T2 and calcitonin plus a measure of T3 at around 10 mcg plus a measure of T4 at around 100 mcg.

T4 is a storage hormone and inert, and it needs to be concerted by your body into T3 the active hormone that the body runs on and is said to be around 4 times more powerful than T4 with the average person needing to convert/find around 50 T3 daily just to function.

Your conversion of the T4 into T3 can be compromised by low levels of vitamins and minerals, especially those of ferritin, folate, B12 and vitamin D and conversion can also be compromised by inflammation, any physiological stress, emotional or physical , depression, dieting and ageing - so while we can't turn back the clock, we can do much to ensure our bodies are well equipped to fully utilise any form of thyroid hormone replacement.

Some people can get by on T4 only : some people find T4 seems to be as effective as it once was and need the addition of a little T3 - Liothyronine, making a T3/T4 combo : some people can't tolerate T4 and need to take T3 only : whilst other people feel at their best when they switch to Natural Desiccated Thyroid hormone replacement.

I'm with Graves but given RAI thyroid ablatio in 2005 and became seriously unwell around 8 years after ingesting this toxic substance and was virtually housebound with no resolve after over 2 years going around various O/P departments.

I found the Elaine Moore Graves Disease Foundation website an excellent starting point in my understanding of Graves, and read of all the symptoms I was the currently dealing with that the NHS " knew nothing about " ??

Finding this amazing forum helped me understand further everything thyroid and I feel totally indebted and why I come back here trying to help others in a similar situation.

I failed in my request for either NDT or T3 - Liothyronine on the NHS so now I self medicate and buy my own thyroid hormones, and am managing lingering Graves, thyroid eye disease, caused by the RAI, and hypothyroidism.

However if you feel well with your thyroid hormone replacement treatment and are simply asking is this doctor right or wrong in her comments - I'd say I wish she were my doctor as I might not have had to go through all I have gone through trying to get better through the NHS. and I like her analogy of the dead letter box - very apt .