Any help appreciated: Hiya all I take 350mg daily... - Thyroid UK

Thyroid UK

137,154 members160,843 posts

Any help appreciated

MrsAB2020 profile image
19 Replies

Hiya all

I take 350mg daily and have now been told this isn’t doing anything at all for me. Today I have been for a scan to be told my thyroid gland is 3 times smaller than it should be. I’m always tired, it’s killing me working 32-40 hours a week. Has anyone else had this?

I’m basically waiting for my results now to see what the next step is as last week I was told I have no T3 and it’s not been present in my bloods for a while now

Written by
MrsAB2020 profile image
MrsAB2020
To view profiles and participate in discussions please or .
Read more about...
19 Replies
SlowDragon profile image
SlowDragonAdministrator

Welcome to the forum

Which brand of levothyroxine are you currently taking

Do you always get same brand

What time of day do you take levothyroxine

Do you take levothyroxine on empty stomach and nothing else apart from water for at least an hour after minimum

No other medications within 2 hours

Some need to be four hours away - iron, HRT, calcium, magnesium, vitamin D

What vitamin supplements are you currently taking

Bloods should be done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

MrsAB2020 profile image
MrsAB2020 in reply to SlowDragon

This is taken 6am every day with no food or caffeine until at least an hour after. (I work in the medication industry so know the in’s and outs) My blood tests are every month and I’ve tried several brands now but none is doing anything

:)

helvella profile image
helvellaAdministratorThyroid UK

Do you have any blood test results?

To be on such a high dose of levothyroxine, but have no T3, would appear to have one explanation - you are not converting the levothyroxine to T3. (Though there is an outside possibility you have virtually no ability to absorb the levothyroxine.)

The obvious direction would be for you to be prescribed T3 (liothyronine). Have you ever discussed this?

MrsAB2020 profile image
MrsAB2020 in reply to helvella

It was -19 for T4 and he said that there was no T3 being produced if that’s any help

SlowDragon profile image
SlowDragonAdministrator in reply to MrsAB2020

Many people on levothyroxine have vitamin deficiencies, essential to test vitamin levels

We need optimal vitamin levels for good conversion of Ft4 to Ft3

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. 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)

If/when also on T3, make sure to take last third or quarter of daily dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test

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/thyr...

helvella profile image
helvellaAdministratorThyroid UK in reply to MrsAB2020

You are entitled to get your full results. I suggest and recommend that you ask your surgery (or the hospital/consultant) for a print of them. I think you really need to have the results and the reference intervals (ranges) for

If there is no T3 being produced, why have they not offered liothyronine to you?

T3 is the active hormone and, to a large extent, it is the only thing that matters. (T4 can get transported into your brain, and get converted within your brain.)

If your T4 is 19, and that is on the sort of range that is widely used in the UK, that would be a perfectly reasonable sort of level. Which suggests you are absorbing some levothyroxine. But with a dose as high as 350 micrograms, I am surprised it isn't higher.

I am not at all surprised you are always tired - you must be having to force yourself to work full time!

By the way, it isn't just thyroid blood results that are important. Id' hope you have also been tested for iron (ferritin and others), vitamin B12, Full Blood Count, and possibly many others.

Please do add some background such as how long you have been unwell, your path from initial diagnosis to now, etc.

Marz profile image
Marz in reply to MrsAB2020

Was the FT3 actually tested ? Did you see the results ? - or were you just told ? Were you born without a thyroid ... which could explain a little more.

MrsAB2020 profile image
MrsAB2020 in reply to helvella

I’ve been told T3 isn’t available on the nhs and my dr was looking into how much this would cost me privately. I see him again this week

helvella profile image
helvellaAdministratorThyroid UK in reply to MrsAB2020

T3 can be available in the NHS.

In general, GPs find that they are unable to prescribe it due to local rules (the CCG overseeing their local polices). But endocrinologists are more often able to prescribe.

If you have no T3, if needed your doctor should put in to be allowed to prescribe T3. From what I have seen so far, this is urgently required.

I don't know why your doctor has to spend more than a few seconds finding the cost of T3! The British National Formulary has a list of prices for most medicines. Private prescriptions are usually the NHS price plus a bit. But if you do go down that route, ring round and ask prices - don't just accept the first price.

bnf.nice.org.uk/medicinal-f...

SlowDragon profile image
SlowDragonAdministrator in reply to MrsAB2020

T3 is available on NHS

Email Dionne at Thyroid UK for list of recommend thyroid specialist endocrinologists who will prescribe T3.......NHS and Private

tukadmin@thyroiduk.org

Roughly where in the U.K. are you

Link showing prescriptions on NHS in England

openprescribing.net/analyse...

You can search by CCG

SlowDragon profile image
SlowDragonAdministrator in reply to MrsAB2020

Before considering adding T3 you need to get all four vitamins tested and supplement to optimal

Do you have autoimmune thyroid disease also called Hashimoto’s diagnosed by high thyroid antibodies?

SlowDragon profile image
SlowDragonAdministrator in reply to MrsAB2020

A GP can not initiate prescription for T3

You need to see NHS endocrinologist to be prescribed T3 initially....3-6 month trial prescribed via NHS hospital pharmacy

As wait for NHS endocrinologist is typically many months, best option is to pick one who is NHS and Private and see them privately first

Obviously all malabsorption possibilities and vitamin deficiencies need sorting BEFORE trial of T3

Coeliac blood test

Endoscopy possibly too

Was your pregnancy and labour trouble free?

barb62 profile image
barb62 in reply to MrsAB2020

I am on T3 through the nhs

SlowDragon profile image
SlowDragonAdministrator

How long have you been on levothyroxine How long at this high dose?

MrsAB2020 profile image
MrsAB2020 in reply to SlowDragon

All of my life. The high dose is since I had my little girl three years ago

SlowDragon profile image
SlowDragonAdministrator in reply to MrsAB2020

What was dose before birth of your daughter

Presumably dose was increased slightly during pregnancy

Malabsorption of levothyroxine is common issue

academic.oup.com/edrv/artic...

Have you had testing for Gut infections like SIBO or H Pylori

hypothyroidmom.com/hashimot...

JAmanda profile image
JAmanda

Why have you not been referred to an Endocrinologist for full testing and assessment? It is absolutely required if you are so unwell and your symptoms have not alleviated with meds. To put you on such a high dose without looking closely at everything is reckless. I'd defo get full private tests done so you have a clear picture of where you are (thyroid and vitamins) but I'd ask for that referral now.

Lots of Endo's in uk prescribe T3. Good luck.

Beani2 profile image
Beani2

350mg is a very high dosage. But what is it your taking?

Miffie profile image
Miffie

I strongly recommend you push for a referral to an endo in the hope off getting help. Ido know it doesn’t always happen. My GP was very happy to prescribe 550mcg of levo a day with no thought if a referral. I was told only Hashi patients can be referred. My thyroid was destroyed over sixty years ago so I could not be referred. The next boy I saw thought that it would be “harmful” to my health to see an endo. I took matters into my own hands but only because I had studied thyroid health and taken advice from this forum. Whilst waiting to see an endo sort out vitamin levels and malabsorption possibilities before you see someone, then you will be good to start on T3 as needed.

You may also like...

any help and advice appreciated😉

with a gp as it’s all done on my gp.com, just looking for any advice really, do I have Graves for...

Any help would be appreciated

I’m sorry to rant but I don’t know who else will understand how I feel. I have stage 4 endometriosis

Any help would be appreciated

Levothyroxine. Most of the time do not feel well. Have been reading posts and do not understand...

Any help appreciated

years ago I started getting ill, sore joints, tired all the time, depression, being cold,...

Latest blood result any help appreciated

10.00 - 22.00 Ferritin 15ug/l range 15-400 I have been taking iron tablets since my last blood...