B12 advice needed: Hi everyone. I posted a while... - Thyroid UK

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B12 advice needed

crabapple1 profile image
17 Replies

Hi everyone. I posted a while back and you were all so helpful. I've taken a lot of advice from this forum, and my blood test results from last week show that all your advice has really improved my thyroid function. I got on top of my supplements and increased my Levo to 200mcg a day. My test results from last week were:

TSH 0.45 mu/L [0.3-5.0] - down from 3.86 in July

T4 14.5 pmol/L [7.9-16.0] - up from 10.9 in July

T3 4.7 pmol/L [3.8-6.0] - up from 3.2 in July

However, my ferritin is really bad:

Serum ferritin 10 ng/mL [15.0-300.0] - it was 28ng/mL when I last had it tested in Sep 2020

I also had a pernicious anaemia screen done last week, and the note from the GP on this was:

"The pernicious anaemia screen was negative, therefore you do not have pernicious anaemia and should not need to have B12 injections. Your B12 was not done on this occasion but the last test was on 14th July and the level was 233 which is well in the normal range."

They also checked my folate last week:

Serum folate 9.6 ug/L [2.5-9999.0]

I know that there is a link between iron and B12 but I'm confused as to what it could be if I don't have pernicious anaemia?

I also recall the advice that B12 under 500 can cause symptoms, so am basically ignoring the GP's comment that my B12 is "well in the normal range".

Should I push on the B12 issue? There really is no reason for my ferritin to be so low - I eat a decent diet with a decent amount of iron-rich foods, and I've been taking the pill back-to-back all summer so I've only had about four periods this year so far (previously the GP put my anaemia down to menorrhagia but that resolved itself once my thyroid levels improved a bit last year).

I suppose my question is: do I go out and get B12 injections on my own, or just start the Thorne Basic-B complex plus some of those sub-lingual lozenges that you have recommended?

I have been taking ferrous fumerate over the last few months and the GP has suggested I carry on, which I will of course, but could there be some other reason that my ferritin level is so low?

Thank you so much in advance, and apologies for the essay!

Nicola xx

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17 Replies
SlowDragon profile image
SlowDragonAdministrator

I suppose my question is: do I go out and get B12 injections on my own, or just start the Thorne Basic-B complex plus some of those sub-lingual lozenges that you have recommended?

Start on separate B12 supplement…..then after 10-14 days add Thorne vitamin B complex

Low B12 symptoms 

b12deficiency.info/signs-an...

With serum B12 result below 500, (Or active B12 below 70) 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.

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 drops 

healthunlocked.com/thyroidu...

B12 sublingual lozenges 

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

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

B12 range in U.K. is too wide

Interesting that in this research B12 below 400 is considered inadequate 

healthunlocked.com/thyroidu...

How other member saw how effective improving low B vitamins has been 

healthunlocked.com/thyroidu...

Low folate

supplementing a good quality daily vitamin B complex, one with folate in (not folic acid) 

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

Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules.

(You can tip powder out if can’t swallow capsule) 

IMPORTANT......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...

In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate methyl folate supplement and continue separate B12

crabapple1 profile image
crabapple1 in reply toSlowDragon

Thanks so much SlowDragon.

Cornwaller profile image
Cornwaller in reply toSlowDragon

I am in awe of your knowledge and the advice you give on this forum.

With your permission there is one detail which might be a mute point, namely, when blood serum b12 reaches 500 to stop b12 supplementation and use the multi B. This is great advice for many but for someone prone to b12 deficiency and rapid onset when supplementation ceases there is a case for continuing supplementation to ensure serum levels remain above 500 and clinical symptoms don't return,

There is a clinical review paper called The many faces of cobalamin deficiency which you can google which discuses the importance of maintaining supplementation.

With best wishes.

SlowDragon profile image
SlowDragonAdministrator in reply toCornwaller

Yes….true ….if next test after going to just vitamin B complex shows drop in B12….will need to add separate B12 back in ….perhaps 3-4 days week….trial and error how many days per week

Vegetarian or vegans invariably need to continue with separate B12 as well as vitamin B complex at least a few days a week

It’s important to retest B12 and folate few months after any changes in supplement levels

greygoose profile image
greygoose

You probably have low stomach acid - most hypos do - so digesting food and absorbing nutrients will be difficult for you.

crabapple1 profile image
crabapple1 in reply togreygoose

Thanks so much Grey Goose. Can you remind me of the remedies / treatments for low stomach acid?

With the MTHFR gene - if I got tested and I do have that - would it change anything in terms of the supplements I need to take? What would knowing I have it change for me?

greygoose profile image
greygoose in reply tocrabapple1

Sorry, I know nothing about MTHFR.

Have a look at this article for treatment of low stomach acid:

healthygut.com/3-tests-for-...

crabapple1 profile image
crabapple1 in reply togreygoose

Thanks so much, I'll have a read.

greygoose profile image
greygoose in reply tocrabapple1

You're welcome. :)

susanmhall62 profile image
susanmhall62 in reply tocrabapple1

I recently tested positive for the MTHFR gene defect (C677T heterozygous) which can result in a 30-40% loss of function. My doctor recommended supplementing with the methylcobalamin form of B12 as opposed to the synthetic Cobalamin. He also wrote me a lab order for a homocysteine test as the blood serum test is unreliable.

A high homocysteine level may be an early indicator of vitamin B12 deficiency.

I'm currently supplementing with Integrative Therapeutics   B12-Active™ Cherry - 30 Chewable Tablets and Thorne  B-Complex #12.

SeasideSusie profile image
SeasideSusieRemembering

crabapple1

I understand the tests for PA can give false negatives.

PA is only one cause of B12 deficiency.

It is important to go by symptoms, not numbers, where B12 is concerned.

Do you have symptoms:

b12deficiency.info/signs-an...

b12d.org/submit/document?id=46

If so did you list them to discuss with your GP?

You could pop over to the PA forum here on HealthUnlocked, list all your symptoms. test results, GP comments, etc, and see what suggestions they have.

healthunlocked.com/pasoc

crabapple1 profile image
crabapple1 in reply toSeasideSusie

Thanks SeasideSusie. I do have some of the B12 symptoms, mostly in the mental health category but also things like glossitis and tinnitus . I'll try the PA forum - thanks so much for the suggestion.

SlowDragon profile image
SlowDragonAdministrator

Low ferritin

Exactly what iron supplements are you currently taking

With Ferritin at 10…..GP should be doing full iron panel test for anaemia

likely to need iron transfusion rather than supplements

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

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

Also See page 7 on here 

rcn.org.uk/-/media/royal-co...

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

An article that explains why Low ferritin and low thyroid levels are often linked 

preventmiscarriage.com/iron...

 

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

healthunlocked.com/thyroidu...

restartmed.com/hypothyroidi...

Post discussing just how long it can take to raise low ferritin 

healthunlocked.com/thyroidu...

Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing. It’s possible to have low ferritin but high iron 

Medichecks iron panel test 

medichecks.com/products/iro...

Iron and thyroid link

healthunlocked.com/thyroidu...

Excellent article on iron and thyroid 

cambridge.org/core/journals...

Posts discussing why important to do full iron panel test

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Chicken livers if iron is good, but ferritin low

healthunlocked.com/thyroidu...

Heme iron v non heme

hsph.harvard.edu/nutritions...

Here’s absolutely excellent reply by @humanbean

on iron and ferritin panel test results for another member 

healthunlocked.com/thyroidu...

Good explanations of iron 

theironclinic.com/iron-defi...

theironclinic.com/ironc/wp/...

Helpful info on iron infusion and supplements 

healthunlocked.com/thyroidu...

Excellent reply by Blearyeyed about iron in this post

healthunlocked.com/thyroidu...

crabapple1 profile image
crabapple1 in reply toSlowDragon

This is so great - thank you SO much! My bedtime reading for tonight!

SlowDragon profile image
SlowDragonAdministrator

Are you now on absolutely strictly gluten free diet

What about dairy free?

Which brand of levothyroxine are you currently taking

crabapple1 profile image
crabapple1 in reply toSlowDragon

Not strictly either yet...I keep falling off the wagon. I manage to be strictly DF and GF for about three weeks at a time, and when I am strictly GF and DF I really notice a difference for the better! But I keep getting these regular episodes of feeling very depressed - tired, sad, angry, insomnia, etc - and then I lose all my willpower and treat myself, for example, to enormous slices of sourdough and butter with a large glass of red wine :-(

I know it's not great and I am trying to address this. It's really hard.

I'm currently taking the Teva 100mg tablets. I take 200mg a day.

SlowDragon profile image
SlowDragonAdministrator in reply tocrabapple1

Find a nice GF bread …there are lots of very good options these days

My favourite is Waitrose brown seeded.

Keep it in the freezer …defrost as required…or pop straight in the GF toaster

I have yet to find a decent butter replacement…..but Sainsbury’s marmite equivalent on GF bread or toast is delicious

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