Can high B12 levels actually turn out... - Pernicious Anaemi...

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Can high B12 levels actually turn out to be B12 deficiency.

gerrycrilley1 profile image
35 Replies

Hi M54

Have recently got bloods back from medichecks was an advanced thyroid test.

Have basically suffered from an under active thyroid for over 4 years, symptoms including fatigue, depression, insomnia and always feeling cold.

However recently have suffered from memory and concentration problems and was wondering if these new symptoms could be a result of B12 deficiency as they seemed to have a lot of similarities even though my previous test for B12 was 1400. Was thinking if it could be false due to absorption issues.

To cut a long story short I got my bloods done again here are the results.

TSH. 0.664

Free T3. 4.6

Free T4 23.3

Thyroglobulin anti. 309

Thyroid peroxidase anti 584

CRP 3.66

Ferritin 75.2

Folate 7.2

Active B12 134 pmolL

Vitamin D 34.2

Have also posted results on healthunlocked.com

Thanks

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35 Replies
Technoid profile image
Technoid

It's always difficult to exclude B12 deficiency especially if thyroid issues may also be involved. Your Vitamin D does seem to be quite low - it should be supplemented over the winter to stay in a good spot. I don't know enough about thyroid to make any comments on your results there.

gerrycrilley1 profile image
gerrycrilley1 in reply toTechnoid

Thanks Technoid just started to supplement with Vitamin D hopefully this might help somewhat. Thanks for replying.

Technoid profile image
Technoid in reply togerrycrilley1

I am not medically trained but I have some nutrition training and would say try at least 2000IU until the summer months. This is well within safety parameters and indeed you might need more but I wouldn't try to get through winters at this latitude without a regular vitamin D supplement.

Narwhal10 profile image
Narwhal10 in reply toTechnoid

Technoid,

Nutrition is Biochemistry. I always look to you for advice.

Polaris profile image
Polaris

Dr John Campbell always posts excellent videos with information on Vitamin D, as it is generally found that NHS information and recommended doses are completely inadequate. This is just one of them:

youtu.be/au6FKi8aAsA?si=G_o...

Personally, when I eventually discovered my own levels were very low, I took very high doses with K2, leading to excellent and only beneficial result.

gerrycrilley1 profile image
gerrycrilley1 in reply toPolaris

Hi PolarisThanks for the Vit D Videos really interesting will do more research.

Thanks

FancyPants54 profile image
FancyPants54 in reply togerrycrilley1

You don't need more research. Your vitamin D is way too low for a hypo patient. We need good levels to help us utilise the thyroid meds. You need to take a quality high strength supplement until end of March. Then check again and see where it is sitting ready for summer. Personally I supplement D all year round. We don't spend enough time outdoors in summer these days.

The Better You Vitamin D3 + K2 is a very easily absorbed and quality supplement. And it has the K2 in it that should be taken with vitamin D.

Your folate is quite low too. Do you take a B Complex supplement? If not, you might want to do that. It will help keep your B vitamins balanced. Look for one with Folate in it, not folic acid.

gerrycrilley1 profile image
gerrycrilley1 in reply toFancyPants54

Hi FancyPants54.Have just started to supplement Vitamin D with K2. Have going to add folate today.

Definitely agree these two Vitamin deficiencies need to be addressed.

Will Also look into getting a good vitamin b complex.

Thanks for all the advice.

Technoid profile image
Technoid in reply togerrycrilley1

Dr. John Campbell posts a very solid stream of misinformation and conspiracy mongering.

en.m.wikipedia.org/wiki/Joh...

This scientist does a tireless job of debunking his nonsense :

m.youtube.com/@Backtothesci...

FancyPants54 profile image
FancyPants54 in reply toTechnoid

But nevertheless Vitamin D and K2 are important vitamins (apparently Vitamin D is a hormone not a vitamin) to have at optimal levels for all sorts of reasons, but especially for hypo patients.

Technoid profile image
Technoid in reply toFancyPants54

They are important but their importance can be (and often is) overstated in the alternative health space. The evidence for the usefulness of supplementing K2 seems to be quite poor but supplementing seems unlikely to do any harm.

Mixteca profile image
Mixteca in reply toPolaris

I'm a fan of him too :-)

Polaris profile image
Polaris

More excellent information on how vital it is to have optimum levels of vitamin D - which is actually a hormone, with receptors all around the body:

youtu.be/zCmW5bLcE9s?si=sys...

am111 profile image
am111

If you are supplementing with B12 injections or high dose B12 tablets (>= 1000mcg/day), your serum B12 will come out high. Your active B12 is also high, which means low B12 is not a problem. High B12 can be a sign of low iron or folate, as these are needed for utilisation of B12 and a deficiency of these can increase B12 levels. Your folate seems to be on the lower side, so you may wish to supplement this.

Low memory and concentration could be thyroid related also. Your FT3 seems to be on the lower side.

gerrycrilley1 profile image
gerrycrilley1 in reply toam111

Hi am111

Am not taking any B12 injections or supplements .

However was under the impression that even though your B12 levels come back normal this could be due to a number of factors and therefore it is recommended to treat the symptoms if they are indicative of a b12 deficiency first and foremost.

Had my B12 checked on the

20/072023 and the Serum Vitamin B12 was 1339pg/m/L normal range 197.0 to 771.0 . NHS.

Then when checked for Active B12 couple days ago level was 134 pmol/L range 37.5 - 188. So a bit confused.

Medichecks.

But totally agree about the thyroid and T3 being a possible issue.

That's for your reply.

am111 profile image
am111 in reply togerrycrilley1

You don't have any neurological problems, so I doubt it is B12. Also, while serum B12 is unreliable, especially in the presence of supplementation, active B12 is much better.

You should note that an underachieve thyroid can lead to lesser utilisation of B12 by the body and an increase in B12 levels. There are studies that show that B12 levels decrease upon starting levothyroxine therapy, so I do believe that your problems are related to thyroid issues and that B12 is not the problem right now.

gerrycrilley1 profile image
gerrycrilley1 in reply toam111

High am111. I do have neurological problems such as memory loss , cognitive decline and some confusion. Theses symptoms can all be caused by B12 deficiency.

But definitely agree that my problems could equally be due to my thyroid problems.

Thanks for the quick response and all the information will definitely take every thing you have mentioned anboard .

Thanks so much.

am111 profile image
am111 in reply togerrycrilley1

Once-a-month B12 shot or some small orals (<= 1000mcg/day) wouldn't harm. If you feel better after a shot, then it could be B12, but based on your test results, I doubt so.

Good luck.

gerrycrilley1 profile image
gerrycrilley1 in reply toam111

Thanks am111

Polaris profile image
Polaris in reply togerrycrilley1

I’ve had an underactive thyroid since the menopause - B12def. has far worse symptoms, being primarily neurological…….

It creeps up v. slowly over time and is much more difficult to manage or for doctors to diagnose correctly, especially as there is no reliable test in an era when doctors rely principally on tests, not symptoms.

This is why most of us end up having to manage it ourselves with self injections.

BMJ Research Document :

bmj.com/content/383/bmj-202...

…………..

UKNEQAS :

onlinelibrary.wiley.com/doi...

gerrycrilley1 profile image
gerrycrilley1 in reply toPolaris

Hi Polaris.That's my thinking the tests are unreliable and you have to go by the symptoms especially with

neurological problems.

Have taken things into my on hands and am getting vitamin B12 injections starting from today, wish me luck.

Polaris profile image
Polaris in reply togerrycrilley1

Very best of luck to you gerrycrilley1 🤞🤞

You won’t regret it and so many knowledgeable people here and at the PAS will help and support.

Sleepybunny profile image
Sleepybunny

Hi,

Welcome to the forum.

Might be worth looking into Functional B12 Deficiency if your symptoms suggest B12 deficiency.

This is where there is plenty of B12 in the blood but it's not getting to where it's needed in the cells so person develops deficiency symptoms.

MMA, homocysteine and Active B12 (holotranscobalamin) may help to diagnose Functional B12 deficiency.

I've read it's possible to have B12 deficiency symptoms with above range B12 results.

Are you taking B12 supplements or having B12 injections?

High levels of B12 in the blood without taking B12 supplements can be associated with a serious health condition and I would expect a doctor to at least test liver and kidney function and full blood count.

It's helpful to post reference ranges for blood tests if you have them.

Your folate result looks like it's probably less than half way up the normal range.

Have you asked your GP if you would benefit from a higher folate result, maybe discuss diet and whether it's worth taking a low dose folate supplement with RDA (recommended daily amount).

Two useful B12 books

I think functional b12 deficiency is mentioned in both.

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the former chair of PAS (Pernicious Anaemia Society).

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)

Very comprehensive with lots of case studies.

A few B12 websites

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

B12info.com

b12info.com/

Stitchting B12 Tekort

stichtingb12tekort.nl/our-e...

Dutch website with English articles

B12 Institute - Netherlands

Has useful lists of symptoms and causes.

B12 Awareness (US)

b12awareness.org/

UK B12 documents

NHS article about B12 deficiency (mentions Functional B12 deficiency in Causes section)

nhs.uk/conditions/vitamin-b...

BSH Cobalamin and Folate Guidelines

Aimed at health professionals

b-s-h.org.uk/guidelines/gui...

NICE CKS B12 deficiency and Folate deficiency

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

NICE are developing new B12 deficiency guidelines to be published in 2024.

nice.org.uk/guidance/indeve...

I often urge UK forum members to track down the local B12 deficiency guidelines used by their ICB (Integrated Care Board) in England or Health Board in Wales/Scotland.

I've written other more detailed posts on this forum which may be worth looking at.

There is a pinned post "Various B12D/PA resources" with lots of B12 info.

I'm not medically trained.

gerrycrilley1 profile image
gerrycrilley1 in reply toSleepybunny

Hi Sleepy bunnyDefinitely agree to what your saying will definitely look into Functional B12 deficiency. Have not had B12 injections or supplements.

My previous b12 vitamin serum test came back as 1339 Pg/mL normal range 197.0-771.0 this was done on NHS. A few months ago.

My liver and kidneys have both come back fine. Am starting to supplement my folate as I believe it low. Thanks for all the links.

B12life profile image
B12life in reply togerrycrilley1

What are the ranges on your test for folate.

I think sleepy bunny nailed it.

I have had experienced both extremely severely low vit d and b12 deficiency but independently. I didn't get confusion with vit d just extreme fatigue.

Do as tech kid said, take the vit D

Sleepy bunny of course nailed the info on b12.

I've never seen a high b12 like that without injections, so that seems unusual. Again sleepy bunny explained how that can happen.

gerrycrilley1 profile image
gerrycrilley1 in reply toB12life

Hi B12life.

Ranges for my folate was 8.83-60.8 my level was 7.2.

Will definitely take on board what sleepy bunny has said. She has a lot of good information.

Cheers.

B12life profile image
B12life

one more thing.

The most important thing is to keep searching for the answer. You must advocate for yourself. And by the fact you found this forum means you are. Keep it up. Keep doing as much objective research as you can!

Litatamon profile image
Litatamon

Since you had a high b12 reading without supplementation on an NHS test, did no one come up with a reason why this has occurred. Or did I miss something?

I see your liver & kidneys were checked and were fine. But it must be investigated to cross off reasons.

gerrycrilley1 profile image
gerrycrilley1 in reply toLitatamon

Hi Litatamon.

Totally agree going to get more bloods done and change my doctor.

Try to get to the bottom of it.

Thanks for the reply.

Sleepybunny profile image
Sleepybunny

Hi,

I'm glad that you said liver and kidney function tests came back fine.

Have you seen the actual results?

I learnt from some difficult experiences to always check results myself after being told everything was normal/no action needed and finding abnormal and borderline results when I checked.

Compare recent blood test results with older results if you have them and look for trends...are any results increasing or decreasing over time?

Your ICB (Integrated Care Board) or Health Board may have published guidance on what investigations should be done if serum B12 is high without supplementing.

Do you have recent results for Full Blood Count (FBC), sometimes known as Complete Blood Count? Might be useful to post these on forum if you have the time and energy. Take care to remove any details that might identify you or health professionals if you do post them.

Full Blood Count

patient.info/treatment-medi...

Research and health articles may have details that could be upsetting.

If you search online for "elevated serum B12 deficiency symptoms" or "nhs raised B12" that should show some research or health articles about high serum B12 without supplementing.

gerrycrilley1 profile image
gerrycrilley1 in reply toSleepybunny

Hi Sleepy bunny.I haven't actually seen the full results relating to my liver and kidney tests. Will chase them up.

Will look out for my full blood count results think I have them somewhere.

Thanks again for all your help Sleepy bunny your a star.

Sleepybunny profile image
Sleepybunny in reply togerrycrilley1

Have you also checked other iron tests besides ferritin?

Link about iron tests

See section on what test result means.

labtestsonline.org.uk/tests...

gerrycrilley1 profile image
gerrycrilley1 in reply toSleepybunny

Hi Sleepy bunny.That's really interesting as my family have a history of Haemochromatosis. Brother and sister have it.

Going to look into the symptoms of Haemochromatosis great find.

Sleepybunny profile image
Sleepybunny in reply togerrycrilley1

Haemachromatosis UK (charity)

haemochromatosis.org.uk/

NHS Haemachromatosis

nhs.uk/conditions/haemochro...

There is a Haemachromatosis forum on HU.

healthunlocked.com/haemochr...

gerrycrilley1 profile image
gerrycrilley1 in reply toSleepybunny

Thanks for the links Sleepbunny going to check them out.

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