How can it I not have an underactive thyroid? - Thyroid UK

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How can it I not have an underactive thyroid?

Curry123 profile image
10 Replies

Hi All,

I'm at the end of my nerves and looking for your advice.

I am 51 year old woman, who has had various health problems from 13 starting with abnormal hormone levels.

Everything I have seems to point to thyroid but the GP says I'm within the normal bracket.

I have 4 people in my family with underactive T including my mother.

Has anyone else found this?

The GP in UK normally just do the basic tests on T levels.

Love to hear from you!

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Curry123 profile image
Curry123
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10 Replies
SlowDragon profile image
SlowDragonAdministrator

Welcome to the forum

Just testing TSH is completely inadequate

Do you have any recent thyroid and vitamin results you can add

First thing is, do you have any actual blood test results? if not will need to get hold of copies. 

You are legally entitled to printed copies of your blood test results and ranges.

The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results

UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

Link re access

healthunlocked.com/thyroidu...

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

Important to see exactly what has been tested and equally important what hasn’t been tested yet

 

For full Thyroid evaluation you need 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

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high 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.

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

Low vitamin levels tend to lower TSH…..so if GP only testing TSH this is useless

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 just before 9am

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 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

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning. 

Watch out for postal strikes, probably want to pay for guaranteed 24 hours delivery 

Link about thyroid blood tests

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

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism 

thyroiduk.org/wp-content/up...

SlowDragon profile image
SlowDragonAdministrator

See you have recently been diagnosed with poor functioning kidneys…….extremely common HYPOTHYROID symptom that should improve significantly as low thyroid levels are increased

ncbi.nlm.nih.gov/pmc/articl...

The GFR is reversibly reduced (by about 40%) in more than 55% of adults with hypothyroidism[40] due to several reasons. 

GP unlikely to be aware of the interconnection

Curry123 profile image
Curry123 in reply toSlowDragon

Hi Slowdragon,

Wow thank you for the advice! Yes I do have have low B12, D and folate. GP just gave me a course of Folic Acid which lifted levels from 43 back to my normal kidney level of 51. So im atage 3 CKD.

Do you know how the NHS react to having a private test done? Do they take it at face value or argue the result?

SlowDragon profile image
SlowDragonAdministrator in reply toCurry123

What are your most recent vitamin D and B12 results

NHS only tests and treats vitamin deficiencies

Down to us to self supplement to maintain OPTIMAL vitamin levels

Vitamin D at least least 80nmol minimum and between 100-125nmol may be better

Serum B12 at least over 500

Any ferritin result?

What’s your diet like

Are you vegetarian or vegan

Gluten free or dairy free

What were thyroid results ?

was this recent test done early morning?

We recommend testing FULL thyroid and vitamin levels once a year

Then testing TSH, Ft4 and Ft3 after any dose change in levothyroxine

Getting all four vitamins tested and at optimal levels quite likely to increase TSH so you can get started on levothyroxine

ESSENTIAL to test thyroid antibodies. GP should test

NHS currently only tests Thyroglobulin (TG) antibodies if TPO antibodies are high/abnormal

Significant minority of Hashimoto’s patients only have high TG antibodies so struggle to get diagnosed

Similarly approx 20% of Hashimoto’s patients never have high thyroid antibodies at all. So a negative antibodies test doesn’t rule Hashimoto’s out. Ultrasound scan of thyroid can get diagnosis in these cases

SlowDragon profile image
SlowDragonAdministrator in reply toCurry123

Do you know how the NHS react to having a private test done? Do they take it at face value or argue the result?

If results are abnormal, GP obligated to retest to confirm

If vitamin results low …..but within range…..you need to self supplement

Thousands upon thousands of U.K. members test privately to make progress either in getting diagnosed or for ongoing management

Examples of Medichecks results

healthunlocked.com/search/p...

Blue horizon

healthunlocked.com/search/p...

Tips on how to do DIY finger prick test 

healthunlocked.com/thyroidu...

or can pay extra for private blood draw at close to you clinic

Only do private testing early Monday or Tuesday morning

Post back immediately

Watch out for post strikes

Curry123 profile image
Curry123 in reply toSlowDragon

Hi Slow Dragon,

Thank you again for your advice, I have a kit on its was to me as we speak from Medichecks. I will let you know the outcome.

SlowDragon profile image
SlowDragonAdministrator in reply toCurry123

meanwhile get hold of last test results done by GP

You’re legally entitled to copies

Curry123 profile image
Curry123 in reply toSlowDragon

Will do, thank you!!

DippyDame profile image
DippyDame

Sounds like another medic with little thyroid knowledge!

They are wrongly trained to view TSH as a reliable marker....which it absolutely is not, and research underlines this.

This article both explains and gives reference to the myth...

thyroidpatients.ca/2021/07/...

This medic is possibly seeing your labs sitting within the ref ranges and assuming all is well....No!

Instead, he should be looking to find the exact spot within the ranges, where you feel well again.

SlowDragon has given you excellent info re private testing...this is possibly the only way you can start to make in-roads into your health issues.

FT3 is the most important reading followed by FT4.

T3 is the active thyroid hormone and for good health it must flood almost all the cells in the body ....and must be available in a constant and adequate supply.

Low cellular T3 = poor health!

Kidney and bladder issues are often hypo symptoms....this has developed with me after decades of no, then wrong, thyroid medication

onlinelibrary.wiley.com/doi....

Post any labs you can obtain and members will help

Can you see another GP because this one needs to learn a few facts about thyroid disease!

Good luck!

Curry123 profile image
Curry123 in reply toDippyDame

Thank you!

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