Help please

[Marnold1980]

Hi All, I have ME and Fibromyalgia, all brought on from Glandular Fever (EBV) however, have long since thought there was issue with my thyroid as I have a lot of symptoms which relate. These are my most recent set of results which my GP as said are “normal”

Whilst normal I suspect they’re not optimal and so I’m hoping to address this but I have no idea where to start? Any advice please? Thank you

Ps. Have started increased Vitamin B and D supplements.

[SlowDragon Administrator]

Well there's lots of tests there ...but you also need

TSH, FT4 and FT3 tested together. Always get any thyroid test done as early as possible in the morning and before eating or drinking anything other than water

You need TPO and TG thyroid antibodies tested for autoimmune thyroid disease

Clearly your FT4 is very low

B12 is low

Vitamin D

Presumably your GP prescribed LOADING dose of vitamin D in 2016 when result was extremely low?

Were you advised that you would need ongoing daily maintenance dose after getting levels up ?

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 .

Once you Improve level, very likely you will need on going maintenance dose to keep it there.

Retesting twice yearly via vitamindtest.org.uk

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

It's trial and error what dose each person needs.

Local CCG guidelines

clinox.info/clinical-suppor...

Government recommends everyone supplement October to April

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

Ferritin and vitamin D need retesting

[Marnold1980 in reply to SlowDragon]

Thank you so much for your response. Can you advise where I can Get the TSH,FT4 & FT3 teats? My GP won’t test as says these results above are normal.

Also. The TPO and TG tests? Is there somewhere that does these? I’m happy to pay to get answers.

Yes I got 800iu from GP to take daily when first tested, which I now know is next to nothing! I am now taking that daily (they’re on repeat prescription) as well as just starting a weekly stronger dose to try to bring levels up.

Thanks

[SlowDragon Administrator in reply to Marnold1980]

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

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

You need TSH, FT3, FT4 plus both TPO and TG thyroid antibodies tested

Medichecks or Blue Horizon 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

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 .

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.

It's also possible to have Hashimoto's and never have raised antibodies, in which case an ultrasound scan of thyroid can help

But get blood tests as first step

Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .

Link about thyroid blood tests

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

Link about different antibodies and Hashimoto's

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

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

List of hypothyroid symptoms

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

Vitamin D

You should have had high loading dose in 2016

300,000iu over 6-8 weeks. That's equivalent to 5000iu daily for 8 weeks or 7000iu daily for 6 weeks. So you have not been well treated by GP

Likely to need ongoing maintenance dose everyday. Retesting annually by GP or via NHS postal kit

vitamindtest.org.uk

Government recommends everyone supplement vitamin D October to April

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

If vitamin D is low, B vitamins may be too. As explained by Dr Gominack

drgominak.com/sleep/vitamin...

healthunlocked.com/thyroidu...

Your B12 and 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...

Low B12 symptoms

b12deficiency.info/signs-an...

EBV and Hashimoto's

thyroidpharmacist.com/artic...

drhedberg.com/epstein-barr-...

hypothyroidmom.com/hashimot...

drchristianson.com/epstein-...

[Marnold1980 in reply to SlowDragon]

This is really useful, thank you. I will definitely get the tests done. Do you think my GP will look at the results? How do you treat if the GP won’t?

I’ve joined a vitamin D group who have suggested K, magnesium and Boron cofactors to help the vitamin D be absorbed better but haven’t felt good since taking the boron.

Also take what you have said re vitamin B on board also though I do currently supplement with vitamin B complex. Will look into the ones you suggested as just taking some from Holland and Barrett at present.

Really appreciate your reply, thanks for taking your time to do that.

[SlowDragon Administrator in reply to Marnold1980]

Come back with new post once you get results and ranges