TSH level: Hi, my daughter has just got TSH level... - Thyroid UK

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TSH level

BRITT1DENMARK profile image
27 Replies

Hi, my daughter has just got TSH level at 0.08. Her GP wants to reduce her medication. I thought this level would indicate over active thyroid but she has symptoms of under active ie gaining weight. Has any one else had this issue. She goes to the gym everyday and is really strict with her calorie intake. She is so miserable. Can anyone help?

Many thanks

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BRITT1DENMARK
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27 Replies
Lalatoot profile image
Lalatoot

There are many posts and replies on here as to why TSH is not a good marker of hormone status once you are on replacement hormones. Your daughter needs to know what her ft4 and ft3 results are. These are the thyroid hormones. TSH is not a thyroid hormone. Going to the gym every day and restricting calorie intake are not beneficial if a person still has hypo symptoms. I would suggest gentler exercise. Her body is struggling to maintain all its functions (hence the hypo symptoms) so hard exercise just puts a further strain on the body.

You need calories to convert T4 (what is taken in form of levo or produced by thyroid normally) into T3 (hormone used by our cells). On a restricted calorie intake you can disrupt conversion resulting again in hypo symptoms. This can ironically lead to weight gain.

If you can get blood tests for TSH, ft4, ft3, ferritin, folate, vit D and B12 then those results will give a better picture of what is happening with your daughter. Post the results on here and you will get helpful advice.

Many of us have been in the same position.

BRITT1DENMARK profile image
BRITT1DENMARK in reply to Lalatoot

Hi, her levels are THS 0.08T4 15.4 and Triiodothyronine 5.1.

Her vit D and B12 are ok. Don’t think she’s had ferritin and folate tested.

SlowDragon profile image
SlowDragonAdministrator in reply to BRITT1DENMARK

Her vit D and B12 are ok

What are actual results?

SlowDragon profile image
SlowDragonAdministrator

Is she already diagnosed as hypothyroid and on replacement thyroid hormones, eg levothyroxine

Assuming yes, how much levothyroxine is she currently taking

Does she always get same brand levothyroxine at each prescription

Just testing TSH is completely inadequate

As Lalatoot says…..over exercising will use up her (limited) levels of thyroid hormones if on levothyroxine

Restricting calories can slow conversion of Ft4 (levothyroxine) into Ft3 (active hormone)

ESSENTIAL To regularly retest vitamin D, folate, ferritin and B12 at least once a year

What vitamin supplements is she taking

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

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

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

Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis. Both are autoimmune and generally called Hashimoto’s.

In U.K. medics never call it Hashimoto’s, just autoimmune thyroid disease (and they usually ignore the autoimmune aspect)

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

On T3 or NDT - day before test split daily dose into 3 smaller doses, spread through the day at approx 8 hour intervals, taking last dose 8-12 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 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

If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease). Ord’s is autoimmune without goitre.

About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s.

Gluten intolerance is often a hidden issue too. Request coeliac blood test BEFORE considering trial on strictly gluten free diet

Link about thyroid blood tests

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

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

List of hypothyroid symptoms

thyroiduk.org/if-you-are-un...

Please add any other test results if have them

Or come back with new post once she has full results

BRITT1DENMARK profile image
BRITT1DENMARK in reply to SlowDragon

Many thanks for your reply

BRITT1DENMARK profile image
BRITT1DENMARK in reply to SlowDragon

Hi yes she is on levothyroxine. 150mgHer t4 is 15.4 and Triiodothyronine is 5.1

Her gp wants her to reduce to 125mg.

Thanks for any advice

SlowDragon profile image
SlowDragonAdministrator in reply to BRITT1DENMARK

Was test done 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

When were these last tested

What vitamin supplements is she currently taking

Has she had thyroid antibodies tested

fuchsia-pink profile image
fuchsia-pink

The simple answer is that TSH is not enough to dose by. She needs to have her actual thyroid hormones tested too, to see how she is doing. Many of us have low (suppressed TSH) without also having an adequate level of free T4 and free T3 - and so need our meds increasing not reducing ... Remember you are ONLY over-medicated when free T3 is too high - not when free T4 is over-range or if TSH is under-range.

Most of us need free T4 and free T3 to be in the top third - or higher - to feel properly well - regardless of what that dose to TSH - and I for one can't lose weight unless they are.

It's also important that she checks key nutrients - ferritin, folate, vit D and B12 - at least once a year, and supplements any that are low. GPs don't know anything about nutrients, as it's not included in GP training, but I've had some success with mine by saying that these are the tests recommended by Thyroid UK

Finally, she may be making things worse if she exercises too much or restricts calorie intake too severely WHILE she is under-medicated. You need a certain number of calories to convert the inactive free T4 into the T3 that is needed in every cell in our bodies ...

Good luck x

BRITT1DENMARK profile image
BRITT1DENMARK in reply to fuchsia-pink

Many thanks for your reply

BRITT1DENMARK profile image
BRITT1DENMARK

I would like to thank you all for your knowledge and replies. What a great group x

BRITT1DENMARK profile image
BRITT1DENMARK

These are her blood results

Blood test
BRITT1DENMARK profile image
BRITT1DENMARK in reply to BRITT1DENMARK

Hi All, do these levels seem ok?

pennyannie profile image
pennyannie in reply to BRITT1DENMARK

Hello there :

New information generally requires a new post as once a post has been replied to it is seen as actioned :

Unless you reply to someone specific to draw their attention back to your post, you may not receive an answer, through no fault of anybody.

It's just how this rolling screen is, and suggest you start a new post with these results as we can all look back at the previous details if we need to refresh our memories.

BRITT1DENMARK profile image
BRITT1DENMARK in reply to pennyannie

Many thanks

pennyannie profile image
pennyannie in reply to BRITT1DENMARK

I see you've now kick started this post - you should get picked up :

BRITT1DENMARK profile image
BRITT1DENMARK in reply to pennyannie

Thank you x

SlowDragon profile image
SlowDragonAdministrator

Ft4 is only 34% through range

Ft3 is 53% through range

Helpful calculator for working out percentage through range

thyroid.dopiaza.org

Most people when adequately treated on just levothyroxine will have Ft3 between 50-70% through range. Usually Ft4 is a little higher

academic.oup.com/jcem/artic...

Interestingly, patients with a serum TSH below the reference range, but not suppressed (0.04–0.4 mU/liter), had no increased risk of cardiovascular disease, dysrhythmias, or fractures. It is unfortunate that we did not have access to serum free T4 concentrations in these patients to ascertain whether they were above or within the laboratory reference range. However, our data indicate that it may be safe for patients to be on a dose of T4 that results in a low serum TSH concentration, as long as it is not suppressed at less than 0.03 mU/liter. Many patients report that they prefer such T4 doses (9, 10). Figure 2 indicates that the best outcomes appear to be associated with having a TSH within the lower end of the reference range.

BRITT1DENMARK profile image
BRITT1DENMARK in reply to SlowDragon

Hi thanks for your reply. I will get all her results and let you see them. I asked her about leaving 24hours since meds to blood test. She takes it in a morning so has been taking it before the blood test x

SlowDragon profile image
SlowDragonAdministrator in reply to BRITT1DENMARK

So if been taking levothyroxine before test this gives false high Ft4 result ….so likely Ft4 would be 12 or lower if left 24 hours between last dose levothyroxine and blood test

Ft4 almost certainly too low …ie needs dose INCREASE in levothyroxine

THS 0.08

Ft4 15.4 and

Triiodothyronine 5.1

It won’t affect TSH

NHS England Liothyronine guidelines July 2019 clearly state on page 13 that TSH should be between 0.4-1.5 when OPTIMALLY treated with just Levothyroxine

Note that it says test should be in morning BEFORE taking levothyroxine

Also to test vitamin D, folate, B12 and ferritin

sps.nhs.uk/wp-content/uploa...

BRITT1DENMARK profile image
BRITT1DENMARK in reply to SlowDragon

Thank you so much x

BRITT1DENMARK profile image
BRITT1DENMARK in reply to SlowDragon

Hi, her B12 level was 553 (197-771)Serum total 25-hydroxy bit D level 96.8

nmol/L

She hasn’t had folate or ferritin checked.

Do these results look ok ?

Many thanks

SlowDragon profile image
SlowDragonAdministrator in reply to BRITT1DENMARK

Yes both good …..does she supplement or is this natural levels?

BRITT1DENMARK profile image
BRITT1DENMARK in reply to SlowDragon

Hi, no she doesn’t supplement

BRITT1DENMARK profile image
BRITT1DENMARK in reply to BRITT1DENMARK

Hi, her GP has told her that taking her meds before test make no difference to results because of type of blood test it was. Makes no sense to me. Do you know if over medicating can lead to weight gain? X

tattybogle profile image
tattybogle in reply to BRITT1DENMARK

just tagging SlowDragon so she sees your reply . her GP has told her that taking her meds before test make no difference to results because of type of blood test it was. Makes no sense to me

GP is only half correct :

The TSH test isn't affected by the time of last dose .

The fT4 test is affected.

But .... from GP's point of view , in this instance the TSH result of 0.08 is the one she's looking at when she's saying the dose need reducing.

We are looking at fT4 , we know that TSH0.08 is not an increased risk for anything, and we're taking symptoms into account too .

You may be able to argue the case for GP not to reduce the current dose if you show them the study slow dragon quoted above: academic.oup.com/jcem/artic...

" patients with a serum TSH below the reference range, but not suppressed (0.04–0.4 mU/liter), had no increased risk of cardiovascular disease, dysrhythmias, or fractures. .... our data indicate that it may be safe for patients to be on a dose of T4 that results in a low serum TSH concentration, as long as it is not suppressed at less than 0.03 mU/liter."

..... but realistically , with TSH at 0.08 it will be extremely unlikely they would consider an increase in Levo dose .. even if you could get them to understand about time of last dose levo /fT4 result. ( GP's aren't often taught about this , as they mostly just learn about TSH tests , but it's true )

BRITT1DENMARK profile image
BRITT1DENMARK in reply to tattybogle

Thank you for the tag. I’ll soon get the hang of this 😂Thanks for the info, it’s a struggle with the GP X

SlowDragon profile image
SlowDragonAdministrator in reply to BRITT1DENMARK

Get folate and ferritin tested

Never supplement iron without doing full iron panel test for anaemia first

Medichecks iron panel test

medichecks.com/products/iro...

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