Help and Support Needed: Hello, I am looking for... - Thyroid UK

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Help and Support Needed

Countryman31 profile image
6 Replies

Hello, I am looking for some support and advise.

In August 2019 I was diagnosed with thyroiditis which settled after taking carbimazole and propranolol. I was monitored and my levels fluctuated but was advised to reduce the meds etc. Fast forward to now and I am still feeling unwell and the last few weeks it has got progressively worse.

My latest bloods showed (Nov 29):

TSH 2.35 my/L (0.35-3.5)

Free T4 12 pmol/L (8.0-21.0)

Free Triiodothyronine 4.0 pmol/L (3.8-6.0)

I also have low B12/Folate and Vitamin D.

Thank you in advance for any advice.

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Countryman31
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6 Replies
SlowDragon profile image
SlowDragonAdministrator

Sounds like autoimmune thyroid disease also called Hashimoto's.

Hashimoto's frequently starts with transient hyperthyroid symptoms and blood tests before slowly becoming increasingly hypothyroid

Have you ever had TPO and TG thyroid antibodies tested for Hashimoto's (and Graves' disease)

Or TSI or TRab antibodies tested for Graves' disease

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

How low were B12 and vitamin D

Are you on B12 injections

What dose vitamin D?

Ask GP to test folate and ferritin levels

You may need to get full Thyroid testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative

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)

Is this how you do your tests?

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies

thyroiduk.org.uk/tuk/testin...

For thyroid including antibodies and vitamins

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

Cheapest option for just TSH, FT4 and FT3 £29 (via NHS private service )

monitormyhealth.org.uk/thyr...

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all primary hypothyroidism in Uk is due to Hashimoto's.

Low vitamins are especially common with Hashimoto's and Graves' disease

Food intolerances are very common too, especially gluten.

So it's important to get TPO and TG thyroid antibodies tested at least once . Plus TSI or TRab antibodies tested if Graves' disease is suspected

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Link about antibodies

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/about_...

List of hypothyroid symptoms

thyroiduk.org.uk/tuk/about_...

Come back with new post once you get antibodies test results

Countryman31 profile image
Countryman31 in reply to SlowDragon

Thank you for you reply, I really appreciate it.

My antibodies were tested in August at the time when I was suffering with the thyroiditis, I was informed that they came back clear of antibodies. Can that change over time?

B12 240 ng/L (187-883)

Folate 7.5 ng/mL (2.7-15)

Vit D 43 nmol/L (50-120)

Ferritin 37.5 ug/L (10-291)

I will contact my GP tomorrow to see if they can access the levels from the antibodies test although that was taken when I was a hospital inpatient so I might need to speak to my endocrinologist.

SlowDragon profile image
SlowDragonAdministrator in reply to Countryman31

So all your vitamins are too low

B12 - you now have injections? Or daily supplements?

folate on the low side. Supplementing a good quality daily vitamin B complex, one with folate in not folic acid may be beneficial.

chriskresser.com/folate-vs-...

B vitamins best taken in the morning after breakfast

Igennus Super B complex are nice small tablets. Often only need one tablet per day, not two. Certainly only start with one tablet per day after breakfast. Retesting levels in 6-8 weeks

Or Thorne Basic B or jarrow B-right are other options that contain folate, but both are large capsules

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

Vitamin D - gP should have prescribed 1600iu daily for 6 months

Local CCG guidelines

clinox.info/clinical-suppor...

GP will only prescribe to bring vitamin D up to 50nmol. Aiming to improve by self supplementing to at least 80nmol and around 100nmol may be better .

Ferritin - borderline low. Ideally Gp should do full iron panel testing for Anaemia

If antibodies were negative Ask for ultrasound scan of thyroid

20% of Hashimoto's patients never have raised antibodies

healthunlocked.com/thyroidu...

Countryman31 profile image
Countryman31 in reply to SlowDragon

I have raised my concerns with two GP’s but they are not interested.

They wouldn’t even consider me for injections and didn’t offer any supplements just said if I wanted to to get an over counter supplement.

Same applies with the Vitamin D too, not interested.

I did have more bloods taken yesterday as my last FBC showed high white cells and other high levels, I had to ask them to do it though. They just keep saying all my symptoms are down to anxiety.

I have had an ultrasound and that was clear too apparently.

SlowDragon profile image
SlowDragonAdministrator in reply to Countryman31

Not surprised. GP's learn virtually nothing about importance of vitamins

So you need to self supplement vitamin D and good quality daily vitamin B complex

Only start one at a time and wait 10-14 days before adding another supplement

Perhaps vitamin D first

Vitamin D mouth spray by Better You is good as avoids poor gut function.

It's trial and error what dose each person needs. Frequently with thyroid we need higher dose than average

Government recommends everyone supplement October to April

gov.uk/government/news/phe-...

Then look at getting full Thyroid and vitamin testing in 2-3 months privately

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies

thyroiduk.org.uk/tuk/testin...

For thyroid including antibodies and vitamins

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

Cheapest option for just TSH, FT4 and FT3 £29 (via NHS private service )

monitormyhealth.org.uk/thyr...

Countryman31 profile image
Countryman31

Thank you so much for such informative reply’s I really do appreciate it.

I will definitely start with some supplements and continue to read the spots on here.

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