Advice needed! : I'm at my wits end with these... - Thyroid UK

Thyroid UK

140,892 members166,004 posts

Advice needed!

neesie profile image
9 Replies

I'm at my wits end with these GPs

my thyroid results months ago, High t4/tsh low t3, they have tried reducing and increasing my levothyroxine the results are never right, t3 never above 3.1, I have restless legs, insomnia, freqent night time waking, exhaustion, freezing cold feet and hands the list goes on. I had my last blood test after 6 weeks of the new dosage results TSH 5.1 T4 23.1, i reported hyper and hypos symptoms and they want me to carry on with the same dose for another 4 weeks depite me saying i had insomnia, palpitations and restless legs is this right, what would you do? i cant carry on like this

blood cortisol done by GP 309 two weeks later 320, they now want to do another blood test before they are able to refer to endo

Written by
neesie profile image
neesie
To view profiles and participate in discussions please or .
Read more about...
9 Replies
Mollyfan profile image
Mollyfan

It sounds to me as though you might have a T4 to T3 conversion problem... I found a full thyroid profile including TSH, T4 and T3 very helpful. If you have all these results to hand, post them ( with reference ranges) and the fantastic people on here can have a look. If not, it may be worth paying for a private test via Medichecks or another provider. Good luck

neesie profile image
neesie in reply toMollyfan

This was the blue horizons thyroid panel, probably 6 months ago the GP reults are above, thank you for replying much appreciated. Test Patient Result Normal Range Units Comment

Biochemistry

hs-CRP 0.68 <5.0 mg/L

Ferritin 69.8 13 - 150 ug/L

Magnesium H 1.03 0.7 - 1.0 mmol/L

Hormones

Cortisol (Random) 448.0 6am - 10am 113 - 456 nmol/L

4pm - 8pm 58 - 278

Midnight <64

Thyroid Function

TSH 0.56 0.27 - 4.20 mIU/L

T4 Total 130.0 66 - 181 nmol/L

Free T4 H 29.0 12.0 - 22.0 pmol/L

Free T3 3.78 3.1 - 6.8 pmol/L

Immunology

Anti-Thyroidperoxidase abs <9.0 <34 kIU/L

Anti-Thyroglobulin Abs 15 <115 kIU/L

Vitamins

Vitamin D (25 OH) 87 50 - 175 nmol/L

Vitamin B12 524 Deficient <145 pmol/L

Insufficient 145 - 300

Consider reducing dose >569

Serum Folate 26.80 8.83 - 60.8 nmol/L

shaws profile image
shawsAdministrator

You need an increase in your dose. Unfortunately the people we deal with (GPs usually) seem to know absolutely nothing about how to improve our health or relieve clinical symptoms.

I doubt if they actually know what a TSH means. It means Thyroid Stimulating Hormone and it rises when our thyroid gland is struggling to produce thyroid hormones. The aim is a TSH of 1 or lower with Free T3 and Free T4 that should be in the upper part of the ranges - both rarely tested.

Levothyroxine is T4 alone. It is supposed to convert to T3 but may not do so effectively for us who feel very unwell.

In case you're unaware - this is the process for blood tests for thyroid hormones:-

1. The earliest possible appointment - fasting (you can drink water) and allow a gap of 24 hours between last dose of thyroid hormones (usually levo) and the test and take it afterwards.

2. Ask for B12, Vit D, iron, ferritin and folate to be tested. All should be optimum.

3. Always get a print-out of your results, with the ranges, for your own records and post if you have a query.

4. Our aim is a TSH of 1 or lower with a Free T4 and Free T3 in the upper part of the ranges.

SlowDragon profile image
SlowDragonAdministrator

Welcome to the forum

How much levothyroxine are you currently taking

Do you always get same brand of levothyroxine

Which brand

What vitamin supplements are you currently taking

When were vitamin D, folate, ferritin and B12 last tested

Do you know if the cause of your hypothyroidism is autoimmune thyroid disease also called Hashimoto’s diagnosed by high thyroid antibodies

About 90% of primary hypothyroidism is autoimmune thyroid disease, so it’s likely

Low vitamin levels are extremely common when on levothyroxine

For good conversion of Ft4 to ft3 we need good vitamin levels

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

Far to often only TSH and Ft4 are tested, completely inadequate

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 .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

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

Is this how you do your tests?

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 antibodies and vitamins

medichecks.com/products/adv...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

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

neesie profile image
neesie

Hi I will post my recent results, i had a test done by Blue horizons and the t4 was 29, t3 3,1 went to the GP with this and got further tests but they have not been able to get things right, so now im taking 100 twice a week and 75 5 times, i had a total thyroidectomy 25 years ago due to thyroid cancer, i have always taken thyroxine in the morning before blood tests, (thanks for the tip) I have had a genetic test done which shows a SNP on the Dio 2 gene so im a poor converter i am taking extra Selenium and vit D, last tests for B12, Vit D, 4 months ago, b12 600, Vit D 87, ferritin in latest results 78

Thyroid function test

Comment: (rich) - Please make routine phone appt (not urgent)

Serum TSH level 5.1 mIU/L 0.27 - 4.2 mIU/L

Report Comment:

Comment: Possible irregular compliance? Advise review this and consider repeat in 8-12 weeks. Dr N Cantley. 01174148432

Serum free T4 level 23.1 pmol/L 12 - 22 pmol/L

Comment: (rich) - Please make routine phone appt (not urgent)

CORTISOLMore information icon

Comment: (rich) - Please make routine phone appt (not urgent)

Serum cortisol 337 nmol/L - nmol/L

Comment: Adrenal insufficiency is unlikely. Please note 9am cortisol should not be used in shift workers and those taking long term steroids or oestrogens. Dr N Cantley. 01174148432

Report Comment:

Comment: NOTE: Cortisol results are unreliable in patients taking prednisolone.

Serum TSH level 5.1 mIU/L 0.27 - 4.2 mIU/L

Comment: (rich) - Discuss at Planned follow up

18-Feb-2021

Serum ferritin 78 ug/L 30 - 470 ug/L

Comment: (CJE) - Normal

CORTISOLMore information icon

Comment: (rich) - Please make routine phone appt (not urgent)

Serum cortisol 309 nmol/L - nmol/L

Comment: If there is ongoing clinical suspicion of adrenal insufficiency a repeat cortisol is advised. Please ensure sample is taken between 8-10am and provide any relevant clinical history. P. Beresford. Tel 0117 414 8415

Report Comment:

Comment: NOTE: Cortisol results are unreliable in patients taking prednisolone.

25-Jan-2021

Serum free T3 level 3.1 pmol/L 3.1 - 6.8 pmol/L

Comment: (CJE) - Normal

Serum TSH level 3.32 mIU/L 0.27 - 4.2 mIU/L

Comment: (CJE) - Normal

Serum free T4 level 18.1 pmol/L 12 - 22 pmol/L

Comment: (CJE) - Normal

08-Jan-2021

Serum TSH level 2.25 mIU/L 0.27 - 4.2 mIU/L

Comment: (rich) - Normal

Serum lipids

Comment: (rich) - Normal

Fasting Sample?

Comment: No

Serum cholesterol 4.9 mmol/L - mmol/L

Serum triglycerides 0.8 mmol/L 0.5 - 1.70 mmol/L

Serum HDL cholesterol level 2.2 mmol/L - mmol/L

Serum cholesterol/HDL ratio 2.2 -

Serum LDL cholesterol level 2.3 mmol/L - mmol/L

Se non HDL cholesterol level 2.7 mmol/L - mmol/L

Lipid comment :

Comment: Please refer to NICE guidance CG181

HbA1c level (DCCT aligned)

Comment: (rich) - Normal

HbA1c levl - IFCC standardised 38 mmol/mol - mmol/mol

Any advice appreciated, they are going to retest cortisol

thank you

neesie profile image
neesie in reply toneesie

Im on Teva and Accord

Stourie profile image
Stourie in reply toneesie

Hi did you say that you always took your levo before the blood test, because that is the opposite of what you should be doing. The only thing you should have before a thyroid blood test is water. Take your meds after. Jo xx

neesie profile image
neesie in reply toStourie

Yes ive always done that but this time i will wait until after the blood test, what difference will it make?

Stourie profile image
Stourie in reply toneesie

Hi Neesie if you take your meds before your blood test your t4 and t3 will be raised and your tsh could be lower so the dr might want to reduce your dose. I always think that you want your bloods good after 24 hours because you still want to feel well before your next dose of levo. Hope that helps. Jo xx

Not what you're looking for?

You may also like...

Levothyroxine only or mixed therapy T4/T3; my experience...

My opinion is based on my own personal experience and I have no medical training at a level above...

Feeling Terrible – Advice Needed

Hi All, Would be grateful for advice since posting blood test results recently. Diagnosed with...
Mikegov profile image

Urgent advice needed please. Blood test readings advice. Very high T3

Ive received my blood test results from Blue Horizon this morning and Im very concerned. I take T3...
Numberone1 profile image

Looking for advice

Been underactive for about 8 years had a routine blood check 6 weeks ago then doc called said...
shazthescot profile image

Advice, please?

Hello, Looking for some advice, please? I've had the following blood results- 28/10 TSH 0.72...
BuenoReeses profile image

Moderation team

See all
Jaydee1507 profile image
Jaydee1507Administrator
RedApple profile image
RedAppleAdministrator
SlowDragon profile image
SlowDragonAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.