Why TSH alone isn't enough?

[KristinCC]

Hello everyone! My sister just had some thyroid bloodwork done and I was dismayed to learn her doctor only tests TSH and has in fact never tested her Ft4 or Ft3. Her TSH is elevated. I don't have her numbers in front of me, but the top of the range was around 6 and she is at 14. Her doctor wants to change her prescription from 125 mcg to 137 mcg and then retest. She's been on levothyroxine for several decades.

I would like to point her towards some literature that explains why testing TSH alone isn't enough so she can present it to her doctor if he refuses to do it. Does anyone have any good links they can share with me? Thanks in advance!

[SlowDragon Administrator]

Presumably you and your sister have autoimmune thyroid disease

On levothyroxine TSH should always be below 2

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 hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

Recommended on here that all thyroid blood tests early morning, ideally before 9am last dose levothyroxine 24 hours before test

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

Your sister should request GP test vitamin D, folate, ferritin and B12 plus coeliac blood test too if she’s not already on strictly gluten free diet

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

List of private testing options and money off codes

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...

[KristinCC in reply to SlowDragon]

Thanks for that info! We've both been tested for hashimoto's and it was negative for both of us. Her antibody tests were conducted years ago so things may have changed for her. Her doctor is reluctant to do more than the bare minimum for her, though.

With her latest blood panel her doctor did test her B12, since I have PA and my dad had chronic low b12, and she was in the upper third of the range. She doesn't test her vitamin d since her health insurance won't pay for it and she can't afford to pay out of pocket (We're in the US).

[SlowDragon Administrator in reply to KristinCC]

As you have PA and autoimmune gas tips your hypothyroidism is almost certainly autoimmune

Have you had BOTH TPO and TG antibodies tested

Significant minority of Hashimoto’s patients only have high TG antibodies.

20% of Hashimoto’s patients never have high thyroid antibodies

healthunlocked.com/thyroidu...

Paul Robson on atrophied thyroid - especially if no TPO antibodies

paulrobinsonthyroid.com/cou...

Obviously it’s essential to test vitamin D annually

Testing thyroid etc in USA

stopthethyroidmadness.com/r...

Please add USA as country on your profile

[KristinCC in reply to SlowDragon]

Interesting...I'll have to search for my antibody test results. I'm not sure if both TPO and TG were tested.

[SlowDragon Administrator in reply to KristinCC]

Well one in 5 (20%) of Hashimoto’s patients never have high thyroid antibodies

Have you had ultrasound scan of thyroid?

[KristinCC in reply to SlowDragon]

No, I've never had a scan. It's never been mentioned.

[SlowDragon Administrator in reply to KristinCC]

Suggest you do so

Here in U.K. costs around £100

[Maggie0652]

Hi KristinCCThe NICE guidelines say that, if you’re still symptomatic after starting levothyroxine, the doctor should test t4 as well as TSH.

See 1.4.4

nice.org.uk/guidance/ng145/...

[Batty1]

Depending on where your sister lives in the US she can pay for her own testing through walk-in labs …. Its pretty simple and not terrible expensive you can pick from couple of lab companies and location take in form and get your blood and walkin labs will email you your results and account. I use them because Endo’s won’t test FT3.

[KristinCC in reply to Batty1]

Thank you!