tsh level 0.03

[BulldogHC]

daughter has just had bloods back.

they just keep giving her more tablets.

Diagnosed last year . She’s 20. They don’t refer to a specialist.

What should we be saying to gp ?

[Hedgeree]

Hi BulldogHC,

Welcome to the forum 😊

Can you post your daughter's blood test results and their ranges for forum members to comment on them?

What was her diagnosis?

Also is she able to join the forum herself? It makes it easier when posting and getting replies.

[SlowDragon Administrator]

welcome to the forum

Is she hypo…..or hyper

What is she prescribed…..dose and brand

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 tested

Also both TPO and TG thyroid antibodies tested at least once to see if hypothyroidism is autoimmune

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

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG thyroid antibodies

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.

Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)

NHS only tests TG antibodies if TPO are high

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

Essential to test vitamin D, folate, ferritin and B12

Lower vitamin levels more common as we get older

For good conversion of Ft4 (levothyroxine) to Ft3 (active hormone) we must maintain GOOD vitamin levels

What vitamin supplements are you taking

Also VERY important to test TSH, Ft4 and Ft3 together

What is reason for your hypothyroidism

Autoimmune?

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

T3 ….day before test split T3 as 2 or 3 smaller doses spread through the day, with last dose approximately 8-12 hours before test

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

Post all about what time of day to test

healthunlocked.com/thyroidu...

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

Only do private testing early Monday or Tuesday morning.

Tips on how to do DIY finger prick test

support.medichecks.com/hc/e...

If she normally takes levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test

If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal

[Jazzw]

Really hope TSH isn’t all that was tested. Would be really inappropriate to raise (presumably hyperthyroid meds?) just on the basis of a suppressed TSH result.

We need lots more information really. Any FT4 and FT3 results? Is the diagnosis Graves?

[tattybogle in reply to Jazzw]

bulldog has replied below Jazzw SlowDragon Hedgeree

BulldogHC they were not alerted to your reply . you need to use the reply box directly underneath the reply you are responding to . You used the one at the bottom of the page so you were in effect 'replying to yourself'

They will see it now as i have tagged them for you

[BulldogHC in reply to tattybogle]

Sorry! Newbie

[BulldogHC]

Yes the others are

Triiodothyronine level 7.2

T4 30.8

All abnormal

Gp just keeps giving levothyroxine increases.

Nothing me toned about graves

Hashimotos was discussed on initial diagnoses by a private consultant who said just take the meds and eat what you like. Through reading , she shouldn’t have soy or gluten.

I’m lost with it all

[SlowDragon Administrator in reply to BulldogHC]

Triiodothyronine level 7.2

T4 30.8

All abnormal

please add ranges

These look above range

Was test early morning

Exactly what is she taking

If she’s on levothyroxine for hypothyroid then dose levothyroxine should be REDUCED

If on Carbimazole for HYPER she needs dose increase

Can she see different GP at the practice

Can you go with her

[BulldogHC in reply to SlowDragon]

I’ll get her to go back on initial findings records .

I did go with her last time and asked questions to the GP who didn’t really like the fact I’d gone in with her kept fobbing us off to just take the tablets and go private if we feel a specialist is needed as they don’t refer through nhs!

[SlowDragon Administrator in reply to BulldogHC]

Exactly what is she taking

Levothyroxine for HYPOthyroid

or

Carbimazole for HYPERthyroid

ALL hyperthyroid patients get referral to endocrinologist

[BulldogHC in reply to SlowDragon]

She’s on levothyroxine. They upped it last time to 75mg one day, 100mg the next

She was initially underactive, now looks like it’s gone the other way. They won’t refer under the nhs to an endocrinologist, we’ve asked several times as I know a retired nurse who told me this is what’s needed .

[SlowDragon Administrator in reply to BulldogHC]

She’s on levothyroxine. They upped it last time to 75mg one day, 100mg the next

So presumably she has autoimmune thyroid disease also called Hashimoto’s

Hashimoto’s, especially in early days levels can swing up and down…..this is because excess thyroid hormone can be released as thyroid cells breakdown….known as a Hashimoto’s swing

So it could be her high result due to that……

Or she could be taking too much levothyroxine …..but 75/100mcg alternate days is not a high dose

Approximately how much does she weigh in kilo?

which brand of levothyroxine is she taking

Many people find it important to be on same brand Levo at each prescription

and exactly what vitamin supplements

Low vitamin levels extremely common when hypo

Essential to test vitamin levels at least annually…..

More frequently in early stages

Suggest you get new test asap

Test the morning after taking 75mcg

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

Only do private testing early Monday or Tuesday morning.

Tips on how to do DIY finger prick test

support.medichecks.com/hc/e...

If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test

If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal

Come back with new post once you get results

They won’t refer under the nhs to an endocrinologist, we’ve asked several times

Even if you got a referral it’s at least a years wait and if TSH within range referral will be refused

Vast majority of endocrinologists are diabetic specialists and frequently useless for thyroid

Here’s link for how to request Thyroid U.K.list of private Doctors emailed to you, but within the email a link to download list of recommended thyroid specialist endocrinologists

Ideally choose an endocrinologist to see privately initially and who also does NHS consultations so that might eventually transfer to NHS

thyroiduk.org/contact-us/ge...

[BulldogHC in reply to SlowDragon]

She was hypo initially- hashimotos when we went for a private meeting on first diagnosis we spent £350 on the private consultant who said to just take the tablets abd don’t need to change diet etc

The initial symptoms were mainly tiredness, hair loss, thick neck, bowel issues. She’s read a lot and change her diet to not include gluten:/soy/ dairy, abd increased protein and exercise.

When we had her first results consultant was amazed she could actually function and even get out of bed to do her job each day due to the blood readings, he said most people would be staying in bed at those readings.!

[SlowDragon Administrator in reply to BulldogHC]

has she had full iron panel test for anaemia

Low iron/ferritin often linked to hairloss

Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing.

It’s possible to have low ferritin but high iron

Test early morning, only water to drink between waking and test. Avoid high iron rich dinner night before test

If taking any iron supplements stop 5-7 days before testing

Medichecks iron panel test

medichecks.com/products/iro...

[BulldogHC in reply to SlowDragon]

She’s had no vitamin tests. Or iron either.

[SlowDragon Administrator in reply to BulldogHC]

So get full thyroid and vitamin testing

Test early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

Only do private testing early Monday or Tuesday morning.

Tips on how to do DIY finger prick test

support.medichecks.com/hc/e...

If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test

If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal

Monitor My Health (NHS private test service) offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65

(Doesn’t include thyroid antibodies)

monitormyhealth.org.uk/full...

10% off code here

thyroiduk.org/testing/priva...

[BulldogHC in reply to SlowDragon]

They’ve put her back down to 75mgs each day. She’s asked for same brand as she’s got 2 different ones for 50 and 25mg, one which contains gluten and a load more rubbish. Testing again in 4 weeks.

[SlowDragon Administrator in reply to BulldogHC]

No Levo contains gluten

Some contain lactose

Which two brands has she got

Testing should be 6-8 weeks after any dose or brand change

[SlowDragon Administrator in reply to BulldogHC]

Get retested privately

[FallingInReverse]

Triiodothyronine level 7.2

T4 30.8

All abnormal

Gp just keeps giving levothyroxine increases.

Can you provide more history and context?

What and when was the situation that led to diagnosis.

What were bloods before treatment?

When providing blood test results please include the blood test range with each.

What has her dosing and treatment history been? Do you have a list of doses + corresponding blood results on those doses?

What has her symptom history been.

|

The part of your reply I bolded above appears to be the opposite of the treatment those blood test results call for.

But we need more info to provide better replies for you.

[BulldogHC in reply to FallingInReverse]

I’ll get the numbers off her