Feeling dreadful : Feeling ill for months now... - Thyroid UK

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Feeling dreadful

Bellmitzi profile image
Bellmitzi

Feeling ill for months now doctors refused bloods months ago as he said they were fine last July had results back today but I can only find my Serum TSH level 0.34mU/l (0.27-4.20). Also VitaminD is 25(OH ) of 25 -50 I have lots of other blood tests done I’ve been to weak to stand up but they seem ok B12 is saying high but that’s normal for me as I get injections every 3 months hope somebody can guide me thanks

25 Replies
SlowDragon profile image
SlowDragonAdministrator

If vitamin D is below 75nmol it’s too low

If Vitamin D is below 50nmol your GP should prescribe 1600iu vitamin D daily for 6 months

If vitamin D is below 25nmol you should be prescribed LOADING dose vitamin D. That’s 300,000iu in total over 6-8 weeks

NHS Guidelines on dose vitamin D required

ouh.nhs.uk/osteoporosis/use...

GP will often only prescribe to bring vitamin D levels to 50nmol.

Some areas will prescribe to bring levels to 75nmol or even 80nmol

leedsformulary.nhs.uk/docs/...

GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)

mm.wirral.nhs.uk/document_u...

But with Hashimoto’s, improving to around 80nmol or 100nmol by self supplementing may be better

pubmed.ncbi.nlm.nih.gov/218...

vitamindsociety.org/pdf/Vit...

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

Test twice yearly via NHS

vitamindtest.org.uk

Vitamin D mouth spray by Better You is very effective as it avoids poor gut function. There’s a version made that also contains vitamin K2 Mk7

amazon.co.uk/BetterYou-Dlux...

It’s trial and error what dose we need, with hashimoto’s we frequently need higher dose than average

Calculator for working out dose you may need to bring level to 40ng/ml = 100nmol

grassrootshealth.net/projec...

Government recommends everyone supplement October to April

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

Taking too much vitamin D is not a good idea

chriskresser.com/vitamin-d-...

Web links about taking important cofactors - magnesium and Vit K2-MK7

Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

2 good videos on magnesium

healthunlocked.com/thyroidu...

Vitamin D and Covid

Notice how much vitamin D many of these medics are taking

vitamind4all.org/letter.pdf

SlowDragon profile image
SlowDragonAdministrator

Suggest you get FULL thyroid and vitamins tested after you finish loading vitamin D prescription

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

Is this how you do your tests?

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/

Bellmitzi profile image
Bellmitzi in reply to SlowDragon

Hi thanks for the reply I haven't been given a prescription and I asked for a thyroid full test and I haven't had one so should I ask for vit D test and is the serum Tsh level out so I can email and say I've been so unwell for months Thanks for replying x

Bellmitzi profile image
Bellmitzi in reply to Bellmitzi

Sorry vitamin D prescription I mean x

SlowDragon profile image
SlowDragonAdministrator in reply to Bellmitzi

When was vitamin D last tested?

Please add photo of results

Bellmitzi profile image
Bellmitzi in reply to SlowDragon

This week I'll add now ty

Bellmitzi profile image
Bellmitzi in reply to Bellmitzi

D results

Letter
SeasideSusie profile image
SeasideSusieAdministrator in reply to Bellmitzi

Bellmitzi

25OHD is the name of the test. Your actual result is 32nmol/L as shown one line up from the bottom of the report.

Some CCGs class Vit D deficiency as <30, some as <25. Whichever is appropriate to your CCG you are not far above deficiency, most certainly in the "Insufficiency" category.

Awe ty I'm useless with the results so I should get some vit D which are the best do you have any idea ty for taking time to reply

SlowDragon profile image
SlowDragonAdministrator in reply to Bellmitzi

So your vitamin D result is 32nmol

GP should prescribe 1600iu per day for minimum of 6 months

Likely to be better to self supplement at higher amount yourself

Better You vitamin D mouth spray works well

Suggest you get the one that includes vitamin K2

One spray = 1000iu

Start on 2-3 sprays per day

Retest in 8-10 weeks

Bellmitzi profile image
Bellmitzi in reply to SlowDragon

Thanks I will look to buy one now I'd be lost without this forum your all so kind ty ps do you know my serum TSH is that low or high or can't say without full result

SlowDragon profile image
SlowDragonAdministrator in reply to Bellmitzi

Low vitamin levels tend to lower TSH

On levothyroxine we frequently have low TSH

Most important results are ALWAYS Ft3....followed by Ft4

Many people on levothyroxine need addition of T3 prescribed alongside levothyroxine if Ft3 is too low

First step is to get all four vitamins tested and optimal by supplementing

This should improve conversion of Ft4 to Ft3

Frequently Essential to always get same brand levothyroxine at each prescription

If you have autoimmune thyroid disease also called Hashimoto’s diagnosed by high thyroid antibodies then likely to need to be on strictly gluten free diet

But get coeliac blood test done before cutting gluten out

Bellmitzi profile image
Bellmitzi in reply to SlowDragon

Thanks very much I've just orderd the spray with k2 I will let you know how I get on Thanks for your help .

SlowDragon profile image
SlowDragonAdministrator in reply to Bellmitzi

Looking at previous posts I can see you have had coeliac blood test few years ago (negative)

Have you been strictly gluten free since that test .....if not...strongly recommend trialing strictly gluten free diet

Bellmitzi profile image
Bellmitzi in reply to SlowDragon

Yes that was negative test I was reading about this im also on blood thinners now Edoxaban I think it's called was on wafrin but couldn't stabilise it but my gp s aren't interested everything you ask is covid twice I've said aches weakness straight away im told this .

SlowDragon profile image
SlowDragonAdministrator in reply to Bellmitzi

Only 5% of Hashimoto’s patients are coeliac, but over 80% of Hashimoto’s patients find strictly gluten free gluten free diet helps or is absolutely essential.

It’s ALWAYS worth trying strictly gluten free diet....minimum 3-6 months

Bellmitzi profile image
Bellmitzi in reply to SlowDragon

I'm goin to have a look at gluten free now I'm getting desperate to be honest I'm not even living at the moment I'm existing day to day gluten free is all new but I will look now ty Charmain

SlowDragon profile image
SlowDragonAdministrator in reply to Bellmitzi

So that’s nothing that contains wheat, barley or rye

Lots of gluten free options available

If toasting gluten free bread, you need separate toaster.

Bellmitzi profile image
Bellmitzi in reply to SlowDragon

Good Morning ,thanks for this advice im goin change my asda shop now online and try this plus my vit D arrives lunch time I'm goin ring my private health as well now last nite I took 200 mg of thyroxine and no change ty kind regards Charmain

SlowDragon profile image
SlowDragonAdministrator in reply to Bellmitzi

You should NOT ever increase levothyroxine without getting full thyroid testing done

Maximum dose increase should only ever be 25mcg

It takes minimum of 6-8 weeks for each dose increase in levothyroxine to have full effect

Strongly recommend staying on 150mcg levothyroxine

Always ensure you get same brand of levothyroxine

Getting all four vitamins optimal

Then retest thyroid levels via Monitor My Health

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

Bellmitzi profile image
Bellmitzi in reply to SlowDragon

Fab thanks I don't feel as if I've taken any to be honest just emailing the surgery now as I can't get to speak to a doctor thanks for all your help I will put my levels up when I get them kind regards Charmain

SlowDragon profile image
SlowDragonAdministrator

Looking at previous posts you are on 150mcg levothyroxine?

Do you always get same brand of levothyroxine

Which brand

Absolutely essential to regularly retest vitamin D, folate, ferritin and B12

Plus Ft4 and ft3

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

Low vitamin levels suggests thyroid is not correctly treated

Bellmitzi profile image
Bellmitzi in reply to SlowDragon

Sometimes brands are changing im on activa North star it says on box ty

SlowDragon profile image
SlowDragonAdministrator in reply to Bellmitzi

Northstar 50mcg and 100mcg tablets are Accord brand

25mcg Northstar is Teva brand

Teva brand upsets many people

Accord used to be called Activis. When it’s name changed in theory tablets remained identical.....but there are a few members on here who have noticed difference and reacted badly

Bellmitzi profile image
Bellmitzi in reply to SlowDragon

Well I will ask for a different brand as last 6 mths I've really gone down hill ty so much im goin to order the spray now I just wish I had your knowledge too kind regards

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