All symptoms of under active thyroid but ‘norma... - Thyroid UK

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All symptoms of under active thyroid but ‘normal’ blood test

Penelope1978 profile image

Hi, I wonder if someone could please advise me on the following.

When I was 10 years old I got diagnosed with underactive and enlarged thyroid.

I was on medication for 11 years then I moved countries and was told by GP there was nothing wrong with my thyroid except being enlarged, it worked normally according to the blood tests.

I’ve put up with the fatigue,cold,constipation,brain fog for more than 10years.

In the last 5 months I’ve had swallowing issues, choking on food and burning mouth syndrome(my mouth and tongue are constantly burning).

I had blood tests and again all coming back normal. I wasn’t offered scan or ultrasound on my neck , no ENT.

I was told I had acid reflux and I’ve been on omeprazole for over a month but I still have all the symptoms.

I never smoked,I don’t drink alcohol.

I was told in the past that each country has different guidelines when to start treating someone for thyroid issues.

I’m now wondering whether I should pay privately for more detailed blood test and a scan on my neck?

Sorry it’s so long and thanks for reading.

12 Replies

Hi Penelope

Welcome to the forum 😊

Can you post your blood results on here and then lots of people will help and support you. You can get them by asking your practice. You’re entitled to have them so there shouldn’t be any problems.

Sadly the medical interpretation of ‘normal’ means nothing. Your blood levels need to be optimal for you to feel well. You could well be hypothyroid with ‘normal looking’ bloods.

Penelope1978 profile image
Penelope1978 in reply to

Hi Scrumbler,

thank you for the welcome and very fast reply.

I will ask again for the copy of my blood test and hope they will give them to me.

I tried once and all I was told all I needed to know it was normal. 😟

Thank you

in reply to Penelope1978

That’s the sort of answer most of us here would expect.

Your practice may have Patient Access. If not already, get signed up to it. The Standard version gives you access to ordering repeat scripts and making appointments. The enhanced version gives access online to medical record and results.

If you can’t get them online, ask again. If anyone’s awkward put request in writing. If they’re still awkward, come back here and we’ll point you in the right direction 😊

Penelope1978 profile image
Penelope1978 in reply to

Thank you for your help

I have Patient access and also NHS app but all I can see in my medical history are the prescribed medications I was given over the years.

I’ll have to request access to my test results.

in reply to Penelope1978

My test results have also disappeared from my Med Records online. I wrote to Patient Access Tech support who told me that this was because some doctors had not secured their internal systems to prevent patients seeing letters from Consultants etc.

God forbid that we should see those. We have an entitlement to those too.

I sometimes feel as though I’m living in Russia. Can’t be though. They have two Covid vaccines now because the first one had ‘horrific side effects’ when trialled. Putin’s daughter (who was part of the trial) didn’t have any side effects though as she was given the first batch which was ok 🤣🤣

Hi Penelope!

Is seeing an endo in your home country a possibility? That’s what I have been doing after being let down by the NHS. I had to have my first appointment in person but thereafter, I have been having a mixture of online and face-to-face appointments. I am lucky that si far levothyroxine has worked for me and it is so cheap to buy in my home country too. My consultations cost €60 and are much more affordable.

I really cannot fathom the wait-and-see approach taken in the U.K. I was even told by my NHS endo that Hashi meant my thyroid would slowly deteriorate but simultaneously told I cannot be treated before things get worse...

SlowDragon profile image
SlowDragonAdministrator

Sounds like a very ignorant GP ...of course results look “normal” on levothyroxine

Now your symptoms all scream hypothyroidism

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 you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Ask GP to test vitamin levels

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 .

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

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

List of private testing options

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

Medichecks Thyroid plus vitamins including folate (private blood draw required)

medichecks.com/products/thy...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

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 if go on thyroid uk for code

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

monitormyhealth.org.uk/thyr...

Medichecks - JUST vitamin testing including folate - DIY finger prick test

medichecks.com/products/nut...

Medichecks often have special offers, if order on Thursdays

Most hypothyroid patients have LOW stomach acid...very similar symptoms to high stomach acid ....but very different treatment

Low stomach acid can be a common hypothyroid issue

Thousands of posts on here about LOW stomach acid (Frequently misdiagnosed)

healthunlocked.com/search/p...

nutritionjersey.com/high-or...

articles.mercola.com/sites/...

thyroidpharmacist.com/artic...

stopthethyroidmadness.com/s...

healthygut.com/articles/3-t...

naturalendocrinesolutions.c...

Protect your teeth if using ACV with mother

healthunlocked.com/thyroidu...

Long term Ppi leads to even lower vitamin levels

pulsetoday.co.uk/clinical/m...

gov.uk/drug-safety-update/p...

Come back with new post once you get existing results from GP and/or new results

Sorry I’m not sure if it was clear in my post but I’m currently not on Levothyroxine and I haven’t been since about 2004.

Unfortunately I have no connections to my home country anymore so that’s not an option.

My GP also suggested anxiety/stress which I don’t have.

Also because of COVID-19 I was diagnosed with acid reflux by telephone consultation.

I was send for blood test due to choking/swallowing problems and family history of thyroid problems.

Thanks for all your help

Jazzw profile image
Jazzw in reply to Penelope1978

I’m going to take a punt and suggest you’ve had a thyroid issue all along and that you’ve had a numpty doctor who’s only looked at your TSH level and decided you’re fine. Which is absolutely the wrong test to be looking at.

The acid reflux will almost certainly be related to this. It’s absolutely classic too for doctors to decide you have anxiety/stress instead of a thyroid disorder. It sometimes feels borderline criminal that they can get away with this.

If you can’t get the blood tests you need from your doctor, I’d strongly recommend going down the private blood test route. You shouldn’t have to—but you’re a long way from being the first person here who’s had to gather evidence at their own expense before getting a doctor to take notice.

Penelope1978 profile image
Penelope1978 in reply to Jazzw

Thanks for your advice

I will look into private blood tests and a scan on my neck.

SlowDragon profile image
SlowDragonAdministrator in reply to Penelope1978

Yes it was clear that they (inappropriately stopped) your levothyroxine

Sorry to say thyroid treatment and understanding is often woefully inadequate

Hence over 110,000 members on here

Acid reflux is EXTREMELY common hypothyroid symptom due to LOW stomach acid

healthunlocked.com/search/p...

nutritionjersey.com/high-or...

articles.mercola.com/sites/...

thyroidpharmacist.com/artic...

stopthethyroidmadness.com/s...

healthygut.com/articles/3-t...

naturalendocrinesolutions.c...

Protect your teeth if using ACV with mother

healthunlocked.com/thyroidu...

Ppi lowers vitamins further

pulsetoday.co.uk/clinical/m...

gov.uk/drug-safety-update/p...

Low vitamin levels highly likely

Come back with new post once you get results

Thanks for your advice

I really appreciate it.

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