Thyroid information

[Rosie2021]

I have an under active thyroid and last year I had half of my thyroid taken out. I don’t get any information or explanation about my tests other that they are ok and come back in 6 months. I’m really fed up and depressed because I do t feel that I’m having any support from my GP. I have gone from someone who was very active to not being able to do much anymore and my weight has increased massively. I still try and get out most days for walks but I just feel helpless and confused as to what is going on with my thyroid, when I do speak to the DR because everything is online now, I’m just referred to other places and I’m made to feel like a burden. How do I get more help on this?

[SlowDragon Administrator]

Welcome to the forum

How much levothyroxine are you currently taking

Which brand of levothyroxine

What vitamin supplements are you currently taking

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

All thyroid tests 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

Essential to regularly retest vitamin D, folate, ferritin and B12 at least annually

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 too often only TSH is tested and is completely inadequate

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 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 with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)

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 all relevant vitamins

List of private testing options

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

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

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease).

About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s. Gluten intolerance is often a hidden issue to.

Link about thyroid blood tests

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

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

List of hypothyroid symptoms

thyroiduk.org/if-you-are-un...

[Rosie2021 in reply to SlowDragon]

Thank you Slow Dragon for your reply, it’s all very confusing and this makes my anxiety worse I’m feeling over whelmed! I’m on 175g since December 2020 and it did make me feel more energetic, I have different makes all 3 packets are never the same. My last bloods were in February 2021 and I was told they were fine and with in range but I don’t know what it is and they only give one reading. Apparently that is the only one they do! I have had several other tests, endoscopy, barium meal, scans, colonoscopy, I think I have had them all , I have a wheezing chest sometimes and I paid private to see someone for that and they said I had a dust allergy, this was before I had my thyroid out so I don’t know if that was the allergy or the lump that was growing on my thyroid, I will book an appointment tomorrow and get some more bloods and also look at the private one because at the moment I have hit Rick bottom with all of this and a recent bereavement of my mum. So all too much going on.

[SlowDragon Administrator in reply to Rosie2021]

I have different makes all 3 packets are never the same.

Which brand of levothyroxine have you got

Generally best to get same brand at each prescription

Some/many people can’t tolerate changing brands. Teva brand especially upsets many people

Just testing TSH is completely inadequate

Breathlessness is often low iron/ferritin

First step is to ideally get on same brand levothyroxine for 6-8 weeks.then get FULL thyroid and vitamin testing done

[Rosie2021]

Hi Crabtrees, they will only do the one TSH and that came back normal! Whatever that is, I’ve decided that I need to get some private ones done and will go from there as it might make more sense then. Thank you

[pennyannie]

Hello Rosie and welcome to the forum:

First of all a " big hug " and I'm so sorry you have lost your Mum :

Ok :

It is essential that you are dosed and monitored on your T3 and T4 blood test levels :

Currently in primary care you are likely only getting a TSH reading, which used in isolation, doesn't say very much of any value :

The TSH was originally introduced to help diagnose a patient with hypothyroidism and was never intended to be used as a measure of anything once a patient was on any form of thyroid hormone replacement.

What is important is the interaction between your T3 and T4 blood test levels:

T4 - synthetic Levothyroxine is a storage hormone and needs to be converted by your body into T3 the active hormone that the body runs on. T3 - synthetic Liothyronine is said to be about 4 times more powerful than T4 with the average person needing to convert / utilise / and need about 50 T3 daily, just to function.

Your own abilty to convert the T4 into T3 can be compromised by low vitamins and minerals, and though your ferritin, folate, B12 and vitamin D maybe in the NHS ranges, they may not be at a high enough level for someone dealing with living with reduced thyroid capacity and function and convertng thyroid hormone replacement medication.

The thyroid is a major gland respnsible for full body synchronisation, including your physical, mental, emotional, psychological and spiritual well being, your inner central heating system and your metabolism.

I would think you may well deserve a referral to an endocrinologist, but to one on Thyoid UK recommended list who are known to be understanding, supportive and knowledgeable about all thyroid treatent options, other than just monotherapy with T4 - Levothyroxine.

But first I would suggest going into the Thyroid UK website, who are the charity who support this forum and looking at the private companies who can run the correct full blood test for you, some even offer a nurse to visit you at home to draw your blood.

When with the full thyroid panel results post everything back on here, including the ranges, in a new post, and you will be talked through what it all means and what your next best step is to better health.

Read up all you can, you are not alone, and we all start this way, get ourselves back on track, and come back on here to help others in a similar situation.

[Rosie2021 in reply to pennyannie]

Thank you so much fir this info, I do have an endocrinologist and he said the same that my thyroid levels were ok! This is why I get confused. I was taken vitamin D, B12 and magnesium but was told to stop, so I only take my levothyroxine now and some times omeprazole for my silent reflux.

[pennyannie in reply to Rosie2021]

Well, yes, that is why I suggested that when the time is right, you'ld be best served going to see an endocrinologist who is on the ThyroidUK recommended list.

First we need to see your T3 and T4 blood tests, plus inflammation, and ferritin, folate, B12 and vitamin D as you can turn some of this around for yourself, with advice here from forum members.

Just a thought, but if the Omeprazole is for acid reflux it is quite likely, as someone dealing with hypothyroidism, that you are actually dealing with low stomach acid and I'm not sure this medicine actually helps that much - either way, it should be taken well away from any thyroid hormone replacement.

If you put Omeprazole in the search bar - top right hand corner - you can read of other questions regarding this medication on the thyroid community research tool.

[humanbean]

When a doctor (or a receptionist) tells you that a blood test is normal this is fairly meaningless without seeing the actual results and reference ranges.

Imagine three patients, A, B and C having a ferritin (iron stores) test... This is the test that doctors often use to check for iron deficiency.

The reference ranges for tests are important and they can change from lab to lab. The reference range given with a test result must be used - people can't pick and choose which reference range they want to use.

These ranges tell you where the lab thinks "normal" is, and is generally what doctors look at. Anything outside the normal range, above or below, is normally indicated on many blood test results by an exclamation mark.

So, suppose the reference range for ferritin is 13 - 150 mcg/L. (This is a common range for this test.)

Patient A has a result of 13 mcg/L = bottom of range

Patient B has a result of approx 82 - 100 mcg/L = roughly mid-range

Patient C has a result of 150 mcg/L = top of range

Doctors will usually consider all these results to be normal because they are all within the reference range and won't be highlighted with an exclamation mark. They might not even notice that Patient A has a bottom of range result and Patient C has a top of range result.

But which of these patients will feel best and worst?

Patient A is likely to feel dreadful.

Patient B is likely to feel the best with a result which is mid-range or a bit over.

Patient C is likely to feel better than A but a bit worse than B. A high in range ferritin may indicate that the patient has some inflammation somewhere.

So this is why we all talk about the ranges and why they are so important. It is important to note that different tests have different levels which are "optimal". It isn't always mid-range - it could be that some levels are best to be high in range, some to be low, some to be upper half of the reference range, and some tests have separate ranges for people based on gender or age etc. Many of the optimal levels mentioned on this forum are from a mixture of patient experience and findings from research papers.

...

Just a note about the bottom of range for ferritin...

The NHS in England is currently in the absurd position where many lab reference ranges for ferritin start at 13 or 15. And this would be regarded as "normal". But if you read this link from NICE :

cks.nice.org.uk/topics/anae...

it says :

In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency.