Blood results

[Jacq1969]

Had ongoing problems since late last year, levels up and down, levo up and down, dr has just called to say levo needs to drop again and she wants me to have a thyroid scan, getting really fed up of feeling so ill all of the time! She thinks it may just be age related - I’m 53 as I’ve been stable on 100mcg for years. Really worried it’s something more serious though and they’re still refusing to do other bloods.

[SlowDragon Administrator]

Refuse to reduce dose levothyroxine based just on TSH testing

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

Do you always get same brand of levothyroxine

Which brand

What vitamin supplements are you currently taking

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 NOW

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 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/

Also vitamin D available as separate test via MMH

Or alternative Vitamin D NHS postal kit

vitamindtest.org.uk

[Jacq1969 in reply to SlowDragon]

This blood test was done 8.20 Monday morning on an empty stomach, I had my last dose of levo Sunday morning so assume that’s optimal gap, I’ve been taking 100mcg accord every day and 25mcg Mercury pharma every other day since December - before that I had 25mcg teva but felt awful on it and changed pharmacy. I did request a full thyroid panel but was told it wasn’t needed, I’m going to have to bite the bullet and find the money for a private test, I’ve added other bloods from Oct that have been added to my patient access account, I’m taking a combined vitaminD/k2 spray 3000iu per day. It’s like getting loud out of a stone trying to get any tests done, I added today if I should retest thyroid in 6 weeks and was told that’s too soon and 8 weeks or so is fine! I feel awful, no energy, breathless, anxiety is through the roof and can’t sleep till gone 3am most nights!

Vit D

[Jacq1969 in reply to SlowDragon]

D3

D3

[Jacq1969 in reply to SlowDragon]

Bloods

Bloods

[SlowDragon Administrator in reply to Jacq1969]

So vitamin D was still too low in October

You probably need to retest to see if results improved since then

If not improved you will need higher dose vitamin D

[Jacq1969 in reply to SlowDragon]

Bloods

Bloods

[Jacq1969 in reply to SlowDragon]

Bloods

B12

[SlowDragon Administrator in reply to Jacq1969]

B12 and folate were both too low in October

Have you been taking any B vitamins since this test?

[Jacq1969 in reply to SlowDragon]

Free t4

Bloods

[SlowDragon Administrator in reply to Jacq1969]

For levothyroxine to work well we need optimal vitamin levels

Vitamin D at least around 80nmol and around 100nmol maybe better

Folate at least half way through range

B12 at least over 500

No ferritin test?

Getting all four vitamins optimal often improves conversion of Ft4 to Ft3

[Jacq1969 in reply to SlowDragon]

Serum ferretin is just above, it was 54 ug/l last time, never had any b vitamins - there is family history, my sister aunt and cousins all have injections, Dr said I don’t need any as my levels are normal. I bought the vit D myself, dr said after last test I didn’t need supplements I just needed to eat foods rich in vit d, I’ve asked for a retest and been told it’s not required. 🤷‍♀️ Feel like they’re not listening to a word I say!

[SlowDragon Administrator in reply to Jacq1969]

GP can’t test vitamin D more than once every 2 years due to budget restrictions

On vitamin D supplements we should test twice year

How much vitamin D are you currently taking

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

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

NHS Guidelines on dose vitamin D required

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

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

ncbi.nlm.nih.gov/pubmed/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 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 Administrator in reply to Jacq1969]

To improve low folate and low B12

supplementing a good quality daily vitamin B complex, one with folate in (not folic acid) may be beneficial.This can help keep all B vitamins in balance and will help improve B12 levels too

Difference between folate and folic acid

chriskresser.com/folate-vs-...

Many Hashimoto’s patients have MTHFR gene variation and can have trouble processing folic acid.

thyroidpharmacist.com/artic...

B vitamins best taken after breakfast

Igennus Super B is good quality and cheap vitamin B complex. Contains folate. Full dose is two tablets per day. Many/most people may only need one tablet per day. Certainly only start on one per day (or even half tablet per day for first couple of weeks)

Or Thorne Basic B is another option that contain folate, but is large capsule

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

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

endocrinenews.endocrine.org...

Low B12 symptoms

b12deficiency.info/signs-an...

With B12 result below 500, recommended to be taking a B12 supplement as well as a B Complex (to balance all the B vitamins) initially for first 2-4 months, then once your serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.

B12 sublingual lozenges

amazon.co.uk/Jarrow-Methylc...

cytoplan.co.uk/shop-by-prod...

healthunlocked.com/thyroidu...

healthline.com/nutrition/me...

[SlowDragon Administrator in reply to Jacq1969]

Ferritin Aim to keep at least over 70

Look at increasing iron rich foods in diet

Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption

List of iron rich foods

dailyiron.net

Links about iron and ferritin

irondisorders.org/too-littl...

davidg170.sg-host.com/wp-co...

Great in-depth article on low ferritin

oatext.com/iron-deficiency-...

drhedberg.com/ferritin-hypo...

This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.

Thyroid disease is as much about optimising vitamins as thyroid hormones

[Jacq1969 in reply to SlowDragon]

At present I’m using the better you vitD/k2 spray 3 sprays a day - 3000iu, I’ve got some capsules from an old prescription that are still in date so might add 2 of those to bring vit d up to 5000iu per day. I bought the better you magnesium flakes at the same time and have been having daily foot baths, someone recommended mag 365 powder to drink but I’d rather not add too many things all at once, I’ve also read that magnesium lotion is good. I’ll definitely look into buying the b vitamins, even though Dr said my levels are good! I can testify to the hair loss, mine comes out in handfuls every time I comb it or wash it, this was the main reason I originally saw the dr back in October as I assumed my iron levels had dropped again - been on and off ferrous fumarate for years before menopause but only thing flagged up was my tsh level, she didn’t mention the 19.7 free t4 at all! do you know of any tests I can pay for to check for the mthfr gene? Thank you so much for all of the recommendations, I wouldn’t have had a clue where to start and would probably have just purchased inadequate vitamins over the counter!

[SlowDragon Administrator in reply to Jacq1969]

This dna test

mthfr-genetics.co.uk

the dna test this company offers is comprehensive

I used this company to evaluate an Ancestry DNA test (£15) I had previously done for genuine family history reasons (not as comprehensive but still was worth it)

[tattybogle]

I was reading some of your history earlier from your 'replies' . but didn't get round to writing a reply . I think that if i were you' i'd be asking Doctor about only reducing to half way between the previous dose you were on for years and what you were increased to a few months ago , So 112.5mcg rather than putting it all the way back down to 100mcg.

My reason for this is two fold , partly because looking at your TSH history above it seems to have been 'up and down' quite a lot even when you were on 100mcg , and on the times it was high it was quite a lot higher than 1 which is what most healthy people have, and this makes me think that 100 mcg might have always been not quite a large enough dose for you.

No idea what caused the dramatic increase in TSH last year , but 100mcg was obviously not enough then and it was correct to increase dose to 125.

So even if TSH is now continuing to fall indicating a reduction might be needed i'd try 112.5 rather than go straight back to 100.

I also think that changing dose has a dramatic affect on mental state, as well as physical state , and so it might be better to do a smaller adjustment.

I'd be reassured rather than scared about them offering to do a scan of thyroid, they should do it on more people and we might end up getting better treatment.

If it helps to put your mind at rest i was 'stable' on the same dose Levo for many years and it all started to get much more messy dose wise after i hit 50.

Im 54 now and it didn't end up being anything 'nasty' wrong with me at all, despite feeling ill enough to end up with investigations for cancer and all sorts.... i think maybe thyroid just goes through a bit of a wobble around menopause.

So don't panic , and try and be pleased you'll actually get to find out what state your thyroid is in , if it's still there.

Sorry that turned into a long waffle , hope it makes some sense.

And pleased you found your way here , i bet like me, you wish you'd found it years ago

x

[Jacq1969 in reply to tattybogle]

Thank you for replying, as you say I’m hoping this is just an age thing and it all settles down eventually, I just feel so ill at the moment, I have days when I struggle to find the energy to get up and walk downstairs as I’m so breathless and exhausted, it’s quite scary as I’m generally quite fit. I’m glad they’ve requested a thyroid scan just to put my mind at rest if nothing else, to be honest my Dr seems totally clueless as to what to do now other than the scan, wish i had the money to go private!