TSH Levels

[Lilykaren1347]

My daughter’s TSH was 1.0 and in the last few months has come down to 0.3. Does this mean she is having too much thyroxine or not enough?

Does this mean she decreases her dose or increase?

Thank you.

[SlowDragon Administrator]

Just testing TSH is completely inadequate

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 Thyroid antibodies are raised or if under medicated

Many of us struggle to get high enough FT3 on just Levothyroxine. Then gut is affected and vitamin levels drop

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Last Levothyroxine dose should be 24 hours prior to 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)

Insist on GP testing vitamin levels

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

Blue Horizon will allow testing of minors. Best to pay extra for private blood draw at local to you clinic, rather than DIY finger prick test

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Link about antibodies and Hashimoto's

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/about_...

List of hypothyroid symptoms

thyroiduk.org.uk/tuk/about_...

NHS guidelines on Levothyroxine including what foods to avoid (note recommended to avoid calcium rich foods at least four hours away from Levo)

nhs.uk/medicines/levothyrox...

NICE guidelines

cks.nice.org.uk/hypothyroid...

The initial recommended dose is:

For most people: 50–100 micrograms once daily, preferably taken at least 30 minutes before breakfast, caffeine-containing liquids (such as coffee or tea), or other drugs.

This should be adjusted in increments of 25–50 micrograms every 3–4 weeks according to response. The usual maintenance dose is 100–200 micrograms once daily.

Did you get list of recommended thyroid specialists from Dionne at Thyroid Uk yet?

please email Dionne at

[e-mail]

[Lilykaren1347 in reply to SlowDragon]

Thank you for replying so quickly. I managed to get an appointment with an Endo in London, for today.

My doctor refuses to check anything other than TSH. He says that a level of 0.3 shows too much thyroxine and has lowered her dose.

She takes all vitamins apart from vitamin D. She was low 2 years ago and was prescribed a high dose for 60 days. When she finished the dose I asked for her to have another blood test for vitamin D and they said that it wouldn’t be necessary and there was no need to continue taking them.

Can you advise on what strength I should buy her?

Also, can you advise what I should ask the endo?

Thank you again for your valuable information

[dodge1979 in reply to Lilykaren1347]

I use this daily

betteryou.com/dlux3000?gcli...

[dodge1979 in reply to Lilykaren1347]

Do own test £29

vitamindtest.org.uk

[Lilykaren1347 in reply to dodge1979]

Thank you very much for this! She’s 16 so hopefully is ok to have this?

[SeasideSusie Remembering in reply to dodge1979]

It's actually £29 - just letting people know as they might think £40 is expensive.

vitamindtest.org.uk/

[SlowDragon Administrator in reply to Lilykaren1347]

GP should have retested afterwards if she had loading dose vitamin D

Local CCG guidelines

clinox.info/clinical-suppor...

Government recommends everyone supplement October to April

gov.uk/government/news/phe-...

We would always recommend getting tested at least annually for low vitamin D

Budget cuts mean GP will only test every two years

Don't start supplementing without testing first

Postal kit from NHS £29

vitamindtest.org.uk

If she is taking any supplements that contain Biotin (eg most vitamin B complex) then this should be stopped a week before ALL blood tests as biotin can falsely affect test results on many blood tests

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

It's also recommended to get FULL Thyroid and vitamin testing BEFORE seeing any consultant, especially if paying for private consultation. Otherwise they have little information to work on.

[SlowDragon Administrator in reply to Lilykaren1347]

GP should NOT have changed her dose just as she is about to do GCSE's.

Drop in dose can cause significant increase in symptoms

Did you get private tests as advised in previous post? So that you have full results for this consultation

Is this a private consultation? They can charge significantly more than Blue Horizon for testing.....make sure to get an estimate of price of blood tests first

[SlowDragon Administrator in reply to Lilykaren1347]

At endocrinologist appointment

If not had full testing she needs TSH, FT3 and FT4 plus both TPO and TG thyroid antibodies tested

All vitamins retested

But if been on biotin need to stop this for a week first

Coeliac blood test too if not already gluten free

[Lilykaren1347 in reply to SlowDragon]

Thank you again for taking the time to message me.

The appointment was a disappointment. He didn’t send my daughter for any blood tests and when I mentioned T3 and T4 he said it was not important as it’s all about the pituitary gland and the end result (TSH) If the T4 is being supplemented with thyroxine that’s all fine.

He changed her dose so instead of 50 every day she takes 75 only at the weekend and 50 weekdays

And that’s it.

I asked if she could have an ultrasound as she hadn’t had one in 3 years and they had spotted a nodule.

He reluctantly said he would request one through my doctor so I feel that sadly it was a waste of time😞

[SlowDragon Administrator in reply to Lilykaren1347]

Is this an increase in dose of Levothyroxine?

How much is she taking at moment?

Was this endocrinologist from the Thyroid Uk list of recommended endocrinologists?

Obviously just testing TSH is completely inadequate. That's why we always recommend getting full private testing BEFORE any consultation

you need to organise private vitamin testing of vitamin D at £29.

vitamindtest.org.uk

Thyroid levels need testing 6-8 weeks after each dose increase or change in brand of Levothyroxine too

strongly suggest you get full Thyroid and vitamin testing via Blue Horizon paying extra for private blood or nurse

Thyroid plus ten if already done vitamin D by then or thyroid plus eleven if not done vitamin D separately

This will test TSH, FT3 and FT4 plus both TPO and TG antibodies, B12, folate and ferritin

Blood test should be as early as possible in morning and fasting, last dose of Levothyroxine 24 hours prior to blood test

Make sure to stop taking any B vitamins a week before

Stop iron supplements a week before too to test where levels are

[Lilykaren1347 in reply to SlowDragon]

Good Afternoon 😊

I am not sure if he is on the recommend list but he used to be the Former President of the British Thyroid Association so I presumed he would be the one to go to.

She was on 50 a day and now he has increased to 75 only Saturday and Sunday.

I will look into Blue Horizon blood test as soon as possible.

Thanks as always for your advice.

I have found the Thyroid group on Facebook so helpful.

[shaws Administrator in reply to Lilykaren1347]

Doctors who adjust our dose of thyroid hormones just because the TSH is 'low' cause symptoms to return. They are fixated upon the TSH and if someone who has been diagnosed as hypo - suddenly doesn't become hyPERthyroid. If they were given too high a dose I'm sure the patient would be at the surgery asking for a reduction with unpleasant symptoms of too much. Her doctor should have checked daughter's free T4 and free T3 levels as they are far more informative than a TSH. T4 is inactive - it has to convert to T3. T3 is the active thyroid hormone and we have millions of T3 receptor cells that need T3 in order for us to function normally. Heart and brain need the most.

thyroiduk.org.uk/tuk/thyroi...

[jimh111]

A TSH of 0.3 is OK, possibly taking a little bit more levothyroxine than she needs but OK. I would pay more attention to her signs and symptoms if she has any. The blood test should be interpreted and not the overriding factor. Of course in the case of the very young it has a greater importance as they can't yet communicate but the blood test, especially TSH is not definitive.

[Lilykaren1347 in reply to jimh111]

Thank you for replying. She doesn’t feel very well. Exhausted all the time, body aches, not sleeping well. She has her GCSE’s next week so trying to get her feeling as well as possible

[jimh111 in reply to Lilykaren1347]

There's nothing you can do thyroid wise within a month or two so I'd just concentrate on getting the best sleep she can and having time for some gentle exercise.

[Lilykaren1347 in reply to jimh111]

Thank you 😊