Researching from scratch: Hi, I have been treated... - Thyroid UK

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Researching from scratch

Hufflepuff3 profile image
15 Replies

Hi, I have been treated for hypothyroidism for the past 9 years but I am currently going through some challenges with my doctors. I had a blood test 3 months ago and the doctor increased my levothyroxine from 100mg to 150mg saying my levels were too low. I have been sleeping through the days and struggled with brain fog. I cannot function normally and have had an ear, nose and throat infection since Christmas (3 weeks ago) I saw a different doctor yesterday who looked at the same test results from 3 months ago and said I was over medicated not under medicated and has reduced my dose drastically. My result 3 months ago was TSH 0.02 apparently. How could two doctors with the one test result have such opposing decisions ? Instead of doing another blood test to define my current levels he changed my medication and told me to test again in 3 months. I live alone and have no one to help me - I'm struggling to look after myself- 3 months is a long time to carry on like this. I was struggling with exhaustion when I did the test 3 months ago.Any advise would be helpful thank you.

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Hufflepuff3
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15 Replies
helvella profile image
helvellaAdministrator

A three month old test result has no current relevance - only historic! But I'm not quite clear which result was from 3 months ago and which is current?

And increasing from 100 to 150 is heavy handed and usually poor practice.

Usually best to change doses by at most 25, preferably 12.5. (Or something like that.)

Hufflepuff3 profile image
Hufflepuff3 in reply tohelvella

Hi, Thank you for replying - I have only had the one blood test that was 3 months ago and the result was TSH 0.02

helvella profile image
helvellaAdministrator in reply toHufflepuff3

That is appalling.

It is also confusing because a TSH result of 0.02 suggests somewhere between adequate and slight over-medication.

So why he raised your levothyroxine by the huge 50% is difficult to understand.

It is also difficult to understand why another doctor, three months later and without any further test results, would change your dose at all.

You absolutely MUST have another test. Even your GP should manage both TSH and Free T4 tests.

(I'll keep it simple and not go on about all the other things that would, ideally, be tested.)

What is your current dose?

Hufflepuff3 profile image
Hufflepuff3 in reply tohelvella

Doctor wanted to reduce dose to 100mg from 150mg but I disagreed and said I wanted to go to 125mg first, then gave me a lecture on TSH which I didn't understand and reluctantly gave me 125mg until April when I get my next test.

helvella profile image
helvellaAdministrator in reply toHufflepuff3

Even if you end up on 100, and that is a better dose for you, I agree better to do it in more modest steps.

SlowDragon profile image
SlowDragonAdministrator

I had a blood test 3 months ago and the doctor increased my levothyroxine from 100mg to 150mg saying my levels were too low.

I saw a different doctor yesterday who looked at the same test results from 3 months ago and said I was over medicated not under medicated and has reduced my dose drastically. My result 3 months ago was TSH 0.02 apparently.

ALWAYS get actual results and ranges

And ALWAYS test early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

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

Dose Levo should only be increased or decreased by maximum of 25mcg

So increase from 100mcg to 150mcg was too much

And possibly didn’t need increasing at all

First step is to see exactly what both test results were

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

patients-association.org.uk...

healthunlocked.com/thyroidu...

In reality some GP surgeries still 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.

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

For full Thyroid evaluation you need TSH, FT4 and FT3 tested

Also both TPO and TG thyroid antibodies tested at least once

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

said I was over medicated not under medicated and has reduced my dose drastically.

So what dose Levo are you now taking

Are you currently taking any vitamin supplements

Dose levo should not be based on TSH …..essential to always test Ft4 and Ft3

Hufflepuff3 profile image
Hufflepuff3 in reply toSlowDragon

Hi, Thank you for replying - I have only had the one blood test that was 3 months ago and the result was TSH 0.02- the doctors will only test for TSH here - I asked for another blood test but they will not do it until mid April - I am currently on high dose vitamin D3 4000iu & Vitamin K 2 (as ordered by doctor) and Vitamin B Complex. I have other medications for heart disease, fibromyalgia and hypertension which I take daily (an hour after levothyroxine)

SlowDragon profile image
SlowDragonAdministrator in reply toHufflepuff3

I have only had the one blood test that was 3 months ago and the result was TSH 0.02

Dose levo should never be changed based on just TSH

And very low TSH suggests possibly you might have been on slightly too high a dose (not too low) so it seems unlikely that dose needed increasing

Never ever agree to change in dose without getting FULL thyroid and vitamin testing done……privately if necessary

How much levothyroxine are you now taking

Which brand

SlowDragon profile image
SlowDragonAdministrator in reply toHufflepuff3

I am currently on high dose vitamin D3 4000iu & Vitamin K 2 (as ordered by doctor) and Vitamin B Complex. I have other medications for heart disease, fibromyalgia and hypertension which I take daily

Low vitamin levels suggests you perhaps did need dose increase in Levo

Perhaps test 3 months ago did include Ft4 and Ft3 ….get copies of all test results from last 2-4 years

Do you always test early morning as recommended

Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after

Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime

verywellhealth.com/best-tim...

markvanderpump.co.uk/blog/p...

markvanderpump.co.uk/blog/p...

No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.

Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away

(Time gap doesn't apply to Vitamin D mouth spray)

If you start to take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test

If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal

Hufflepuff3 profile image
Hufflepuff3 in reply toSlowDragon

I will take this into account with future medication doses - I just wondered why we are not told of this information by the doctors as they have all the information in front of them ? The leaflets don't mention other medications and just say on empty stomach and wait 1 hour for food and drink. I will write to my doctors practice manager explaining the history and ask for a second opinion as I think 3 months is too long to "wait and see" - I can't even stand at the cooker long enough to not burn everything. I will request a full test of all the levels and let you know the outcome - ps, I am in the UK 🇬🇧 - does the private testing cover us here ?

SlowDragon profile image
SlowDragonAdministrator in reply toHufflepuff3

Probably the majority of U.K. patients end up testing privately to make progress

Sadly it’s increasingly common to only get TSH tested

examples of posts discussing private testing

Medichecks results

healthunlocked.com/search/p...

Blue Horizon results

healthunlocked.com/search/p...

GP’s rarely know enough to correctly test and manage hypothyroid patients

Hence this is by far the busiest forum on Healthunlocked - over 135,000 members…..vast majority are U.K. based

Jaydee1507 profile image
Jaydee1507Administrator

How very confusing for you. I really don't like being passed around doctors with different opinions myself as the continuity of care is non existent.

Was it just TSH that has been tested? Do you have those results?

Suggest you get your own private blood tests done 6-8 weeks from your last dose change to include TSH, FT4 & FT3. We cant really tell whats happening just from TSH alone.

What are you supplementing with?

What are your latest results for ferritin, folate, B12 & D3?

I hope you feel a bit better soon.

Hufflepuff3 profile image
Hufflepuff3 in reply toJaydee1507

Hi, Thank you for replying - I have only had the one blood test that was 3 months ago and the result was TSH 0.02, doctors will not do blood tests by request here, only if they find something themselves. My Vitamin D was done about a year ago and I have been on high dose Vitamin D3 ever since. I cannot get my thyroid test again until mid April

Jaydee1507 profile image
Jaydee1507Administrator in reply toHufflepuff3

Exactly what dose is a 'high dose' vitamin D3? Some that claim to be really aren't at all.

Vitamin D3 should be tested every 6 months at least until you know what dose you require in summer and winter.

Vitamin D should be around 100 - 150. Buy one that includes vit K2 to help it go to your bones. Some are available in oil or you can take it with an oily meal for better absorption. Many members like the ‘Better You’ range of mouth sprays that contain both bit D & K2. Use this calculator to work out how much to take to get your level to 100-150. wildatlantichealth.com/vita...

You could test yourself privately with a private test in 6-8 weeks from when you last changed dose which is what I would strongly recommend you do. See instructions and places to buy in SlowDragons reply to you.

SlowDragon profile image
SlowDragonAdministrator

Didn’t realise this was your first post …..welcome to the forum

Suggest you get FULL thyroid and vitamin testing 6 weeks after changing dose levothyroxine

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

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

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

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.

Link about thyroid blood tests

thyroiduk.org/testing/thyro...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/signs-and-sym...

Tips on how to do DIY finger prick test

support.medichecks.com/hc/e...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

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