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Serum B12 levels compared to active B12 levels

Supermisshelen profile image
19 Replies

Hi everyone

I am new to this forum as have hypothyroidism , but struggle to raise my serum b12 levels over 450 ( in a range of 209-900). Whilst I’m working on my medication, a trichologist did say to me a while ago that B12 deficiency could easily be the root cause of my hairloss.

What I’m trying to understand, is how the active B12 test levels correlate to serum B12. I have not yet had an active serum B12 test, but my sisters came out as 137p/mol ( minimum was <25)?

I’ve been reading more and more about how the function of B12 can be impaired, in spite of negative tests for PA for people, and as my levels have always been low for a decade or more and as a meat eater, I’m really wondering if this could apply to me.

Thanks in advance!

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Supermisshelen
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19 Replies
Nackapan profile image
Nackapan

Low ferritin levels can also give hair loss.How low have your b12 levels been.

Keeping them above 450 you say a struggle? Sone operate on alot lower levels. After my experience I got my family ti get their b12 levels checked . All different numbers.

Active b12 is a different test the NHS dosent do.

Serum b12 levels shows all the b12 in your blood . Active and inactive.

I've never had an active b12 test

Also have no idea at what level I was functioning on before getting deplete as it had never been tested before

So I would get a full iron panel and ferritin dine as well as folate and vitamin D if you havent already.

Hooe you get some answers

Supermisshelen profile image
Supermisshelen in reply to Nackapan

Thanks Nackapan! I had a B12 of 200 for years and years but iron went to 11, but I’ve had that up in the 90’s for a long time now. I’ve heard that link about ferritin and hair loss. I keep the iron up without supplementation, but the B12 drops a lot if I stop supplementing, I find.

Nackapan profile image
Nackapan in reply to Supermisshelen

Good the supplements work. It's high enough Remember iron is complicated . But if your ferritin level is normal is your thyroid medication right?

Or folate ect .

Depending what measurement if b12 used it coukd be you were operating okay on that level.

I think I mustve been.for years okay on a similar level. As it usually decreases slowly. (first ever b12 done in a range if 200-900 mine was 106.Thr tipping point for me.

My husband was tested. 180 but like you takes b12 tablets and keeps it in the 300's to be on the safe side . He never has had symptoms though.

So varied

JanD236 profile image
JanD236

If your serum B12 levels are around 450 I wouldn’t consider this a low reading (as it’s half way up the range). Do you have other B12d symptoms?

Just to mention that I would also add a test for zinc to those mentioned by Nackapan.

Supermisshelen profile image
Supermisshelen in reply to JanD236

I did manage to get my levels to the 450 mark after lots of supplementing although they dropped back once I stopped. I have a variety of other symptoms, the main ones being fatigue, dizziness, neutropenia but it’s difficult to tell if they are directly related to B12 or hypothyroidism !

Gambit62 profile image
Gambit62Administrator

active usually 1/5 of serum so your sisters active would equate to serum around 700 - ie near the top of the range.People normally sit at a pretty constant point in the normal range because levels are regulated from stores in the liver. If you have an absorption problem this mechanism stops working and serum levels start to drop. If your levels were around 200 'for years' that implies it is your natural level.

Supermisshelen profile image
Supermisshelen in reply to Gambit62

Ahhh that’s interesting , thank you Gambit! The thing about my levels were that I only started having record of them 10-12 years ago, once my hair loss had become an issue I was aware of.

Gambit62 profile image
Gambit62Administrator in reply to Supermisshelen

whilst it is possible that the hair loss is related to B12 there is actually nothing to suggest that you have a B12 absorption problem as your levels would have continued falling.Unfortunately there are many things that can cause hair loss. B12 is one but only one of many.

Supermisshelen profile image
Supermisshelen in reply to Gambit62

I see that.. there are a lot of reasons for it. It was the second trichologist that I saw that suggested it, as my iron had been long corrected and my hair loss is diffuse. But I’ve learnt it’s not a straight forward problem! Thank you for your help here, it’s useful to understand B12 a bit better.

Cherylclaire profile image
CherylclaireForum Support in reply to Supermisshelen

I had hair loss: overall thinning and receding at temples, rather than patches like alopecia. It would go very frizzy and then come out -every single time I washed it- like a handful of cobwebs. Partner compared getting in the bath after me to sitting on a nest !

My B12 was just below range, my folate and ferritin were low within range- and all three were treated. My MMA was found to be raised. Osteoporosis of the spine was also found and I was given vitamin D on prescription.

My GP thought it most likely that folate or ferritin were to blame for this particular symptom -although it is on B12 deficiency lists.

It took a couple of years to get my folate and ferritin levels to be stable at a good level and both are still checked regularly (about once a year now). I have frequent B12 injections, now by self injection. My MMA level dropped to within range in 2019 for the first time in 3 years. Finally, my latest blood test, at the end of last year, showed the best results generally for five years.

Although some still remain, many of my original symptoms are now rare- including hair loss, which hasn't occurred since early December.

Difficult to determine the cause - but it did take a long time to improve. Perhaps a combination: B12, folate, ferritin ?

I have seen, when I Googled B12 deficiency and hair loss, some extreme cases, but also a patient who, on having B12 deficiency addressed, amazingly found her "lost" hair return - but in it's original colour (no grey). This resulted in a front to back two-tone effect that I found fascinating.

Supermisshelen profile image
Supermisshelen in reply to Cherylclaire

Hi Cherylclaire thank you soo much for sharing your story as it is so useful...I think I read that about grey hair returning to normal colour in case studies too! Im trying to go over advice Ive read and been given with a fine tooth comb now, because I know that the reality is that healing for these things is slow, even once I'm on that right path. Thanks again x

Cherylclaire profile image
CherylclaireForum Support in reply to Supermisshelen

The "root cause" of your hair loss ?Going over advice "with a fine tooth comb" ?

Had to smile.

Made me think of you, clivealive !

Supermisshelen profile image
Supermisshelen in reply to Cherylclaire

😂😂

sunset212 profile image
sunset212 in reply to Gambit62

Hi sorry for jumping on your reply to supermisshelen, but just zoomed in on the point on 'active is usuallt 1/5 of serum level. My active b12 last week came out at 256 pmol/l so that would equate to 1280 right? Does that put me in a dangerous category? I had been supplimenting and also had an injection but over 4 months ago? If i stopped all suppliments can i feasibly bring level down in 3 weeks? thanks for reading

Gambit62 profile image
Gambit62Administrator in reply to sunset212

sunset212 how are you feeling? If you have had an injection then serum B12 levels - active or not - are pretty hard if not impossible to interpret.An injection will put your levels off the measurable scale and then they will fall over time - how fast actually varies a lot - early studies showed an average of 2 months (hydroxo) or 1 month (cyano) for levels to fall down to normal range or below - however there was variation with some people retaining cyano longer than hydroxo and some actually retaining levels a year or more after the injections. One reason why you need to pay more attention to symptoms than blood levels in deciding frequency of injections.

There is some confusion about high serum B12 levels because it can be an indicator of some nasties - but it is the nasties that cause the high serum B12 not the other way round (kidney problems meaning you don't clear excess B12 or liver problems leading to dumping of B12 stores). However, if you have had an injection and been supplementing that is going to be the cause of the high levels.

sunset212 profile image
sunset212 in reply to Gambit62

Thank you so much for your detailed reply much appreciated

Sleepybunny profile image
Sleepybunny

Hi,

From personal experience... it is possible to have severe B12 deficiency with results that are well within normal range.

Some people have Functional B12 Deficiency, where there is plenty of B12 in the blood but it's not getting to where it's needed in the cells so they experience symptoms of B12 deficiency.

One of my symptoms was hair loss from head and other areas of body.

Symptoms of B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

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

I'm assuming you're in the UK.

Patterns of treatment, type of B12 etc can vary between countries.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

Link about "What to do next" if B12 deficiency suspected

b12deficiency.info/what-to-...

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Point 5 in above link mentions being symptomatic for B12 deficiency with an in range serum B12 result. Functional B12 deficiency is mentioned.

Letters avoid face to face confrontation with GP and allow patient time to express their concerns effectively.

Best to keep letters as brief, to the point and polite as possible. It's harder to ignore a letter in my opinion.

UK B12 documents

BSH Cobalamin and Folate Guidelines

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

BMJ B12 article

bmj.com/content/349/bmj.g5226

Emphasises need to treat patients who are symptomatic even if their B12 level is within range.

BNF Hydroxycobalamin

bnf.nice.org.uk/drug/hydrox...

NICE CKS

cks.nice.org.uk/anaemia-b12...

B12 books I found useful

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

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). BNF treatment info in book is out of date...see BNF link in this reply.

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies.

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

Very comprehensive with lots of case studies.

B12 article from Mayo Clinic in US

ncbi.nlm.nih.gov/pmc/articl...

Table 1 in above article is about frequent misconceptions about B12 deficiency.

I've written some very detailed replies with lots of B12 info eg symptoms lists, causes of b12 deficiency, more B12 books, more B12 articles etc.

See links below.

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

I am not medically trained.

Supermisshelen profile image
Supermisshelen in reply to Sleepybunny

Thank you ever so much sleepybunny....this is basically what I believe may apply to me, I've read about functional B12 deficiency and I'm not sure if its been caused by low thyroid or even if its the other way round, but you've put so so much useful info on this thread and I'm going to see if I can approach my endocrinologist about this (even my GP has said that if they get a letter from a specialist, they will basically action it) as I need to cover all bases, and B12 won't harm me so worth a go. Thank you again xx

Sleepybunny profile image
Sleepybunny

Hi,

I hope you find the answers you need.

Some links about Functional B12 Deficiency

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

pn.bmj.com/content/9/1/37

ncbi.nlm.nih.gov/pmc/articl...

ncbi.nlm.nih.gov/pmc/articl...

academic.oup.com/qjmed/arti...

stichtingb12tekort.nl/engli...

Have you ever had a MMA blood test as this may be of some help in diagnosing functional B12 deficiency?

labtestsonline.org.uk/tests...

Link about MMA

stichtingb12tekort.nl/engli...

Link about serum B12 test - mentions causes of falsely normal/high levels of B12.

stichtingb12tekort.nl/engli...

I also wondered what your folate levels were like?

Symptoms of folate deficiency can overlap with those of B12 deficiency.

See BSH Cobalamin and Folate Guidelines link for more info.

BNF Folic Acid

bnf.nice.org.uk/drug/folic-...

Folate Deficiency

patient.info/doctor/folate-...

There are various potential causes of neutropenia (low levels of neutrophils, a type of white blood cell).

Both B12 deficiency and folate deficiency can lead to various types of cytopenia.

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