TT and TSH: I am curious to know about patients... - Thyroid UK

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TT and TSH

annnsandell profile image
9 Replies

I am curious to know about patients who have had a Total Thyroidectomy and whether it is actually ever likely to have a TSH test above .0 with normal doses of Levothyroxine. I know after Thyroid Cancer Consultultants like it to be below .0 but has anyone ever had it go above? This might well affect where patients have their T4 reduced to increase TSH and end up on too little because of it. Anyone on 100 mg or less T4 and unwell?

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annnsandell
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helvella profile image
helvellaAdministrator

I think you might have a typo in your post.

TSH cannot be below .0

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annnsandell profile image
annnsandell in reply tohelvella

Yes it can. Mine is currently .02 mU/L (0.30-4.50) and always is as it is supposed to be to suppress cancer.

helvella profile image
helvellaAdministrator in reply toannnsandell

But that isn't below .0! :-)

Below zero would be negative.

I understand that the wisdom is TSH should be suppressed (which itself has various interpretations).

annnsandell profile image
annnsandell in reply tohelvella

Obviously a confusion here over negative numbers. Suppression is usually aimed at below 0.02.

SlowDragon profile image
SlowDragonAdministrator in reply toannnsandell

To feel well the most important results are Ft3, followed by Ft4

Often TSH is below range when Ft3 is at good level

How do you feel?

For full Thyroid evaluation you need TSH, FT4 and FT3 tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common on just levothyroxine, especially if you have poor conversion of Ft4 to Ft3

Low vitamin levels tend to result in poor conversion of Ft4 to ft3

Ask GP to test vitamin levels

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)

Is this how you do your tests?

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

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 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...

annnsandell profile image
annnsandell in reply toSlowDragon

Yes thank you, I know most of the principles and tests. I am thinking hyperthetically about whether it is actually possible with no Thyroid to raise TSH in range or will TSH never come in range? I don't actually want to achieve it. There must also be a Levothyroxine dose under which a person without a thyroid should not go. As you know many doctors swear by TSH without fully understanding the subject.

2020kel profile image
2020kel in reply toannnsandell

Hi there only just seen post you can increase TSH I had TT in 2017 been well and unwell since. Had a rough time this last 12 months

May TSH was 6.5 GP increased my thyroxine to 175mg

June TSH was down to 1.5

August still 1.5 leaving me on 175mg now.

So to answer your question it is possible to have a higher TSH with no thyroid

annnsandell profile image
annnsandell in reply to2020kel

Thank you, All interesting stuff. Wish you well.

annnsandell profile image
annnsandell

Thanks JaneyJanuey

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