B12 low then high 3 months on - Pernicious Anaemi...

Pernicious Anaemia Society

32,140 members23,302 posts

B12 low then high 3 months on

Mazcan profile image
3 Replies

So my B12 & Folate was low 3 months ago

(Dad had pernicious anaemia)

Had my loading shots, 6 in 2 weeks

Nearly 3 months on and now my B12 seems high but folate is even lower

Still have high MVC aka large red blood cells

Feel run down n crappy

Do I defo not have it now I'm back up?

What else could be messing with my bloods?

Written by
Mazcan profile image
Mazcan
To view profiles and participate in discussions please or .
Read more about...
3 Replies
Sleepybunny profile image
Sleepybunny

Hi,

Have you been tested for PA?

PA requires life long treatment.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

Testing for PA

pernicious-anaemia-society....

Link about "What to do next" if B12 deficiency suspected or newly diagnosed.

b12deficiency.info/what-to-...

I am not medically trained but I think your B12 levels would be expected to be high if you're on B12 injections.

"Had my loading shots, 6 in 2 weeks"

If you have neurological symptoms, I would expect you to have had more loading injections than this.

BNF link below has two treatment patterns

1) for those without neuro symptoms

2) for those WITH neuro symptoms

BNF Hydroxocobalamin

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

"So my B12 & Folate was low 3 months ago"

If your folate was low were you prescribed folate treatment or did the GP suggest you start taking a folate supplement?

Have you got the actual results for b12, folate and ferritin ( or other iron tests) and full blood count?

"Still have high MVC aka large red blood cells"

Both B12 deficiency and folate deficiency can lead to macrocytosis (enlarged red blood cells). There can be other causes of macrocytosis besides B12/folate deficiencies.

What has your GP said about the high MCV?

I'm wondering if you're getting enough B12.

Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, UK B12 documents, B12 books, more B12 websites, B12 articles and a few hints on dealing with unhelpful GPs.

Some links may have details that could be upsetting.

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

Gaudygoat profile image
Gaudygoat

Hi Mazcan

As Sleepybunny has said, PA requires lifelong treatment but that is true for virtually all causes of low B12 (unless it was down to diet).

Have you had further doses of B12 since your six loading doses? You should be getting them every 3 months (if not more depending on symptoms).

Your bloods can show good levels of B12 but it has to be active B12 for your body to use it. I don't fully understand the difference (other than the body is only able to use active B12) but it seems that if people that are on injections get retested, their levels often show as normal or high, even when they are suffering the effects of low B12.

The long and the short of my response is that even with your blood results showing high levels of B12, you could still be deficient and unless there was a specific reason for your levels being temporarily low, you should still be getting regular B12 shots.

Gambit62 profile image
Gambit62Administrator

Treatment on serum B12 levels after loading shots is not recommended in the most up to date standardsonlinelibrary.wiley.com/doi...

Treatment of cobalamin deficiency

....Maintenance treatment for patients presenting without neurological deficit is with hydroxocobalamin 1000 μg i.m. every 3 months. Those with initial neurological deficit should receive hydroxocobalamin 1000 μg i.m. every 2 months. No further testing for cobalamin levels is required ....

The whole concept of the normal range doesn't apply after loading shots because of the way the shots work - they raise serum B12 well above the normal level and then it falls over time - how fast it falls varies considerably from individual to individual. The average may be 1 month with cyanocobalamin and 2 months with hydroxocobolamin but the early studies showed that in some patients blood serum levels were still high 4 years after loading shots. Unfortunately they don't record how the patients reported feeling during those 4 years.

You may also like...

Low 'normal' B12 and high folate - B12 deficient?

possibly had B12 deficiency, although no-one in my family has pernicious anaemia. I had a blood...

B12 * Help Please* High then low. I’m puzzled!

I have B12 injections every 3 months and it was flagged that my B12 level was very high. I didn’t

GP will only agree to 3 monthly injections unless I have a blood test showing low b12 levels.

let alone 3 months! I will not agree to further b12 testing as my levels are bound to be high. It’s...

GP Stopped my 3 monthly B12 Injections

Suspect Functional B12 deficient. GP agreed to loading doses and then 3 monthly injections. My...

High liver levels and low B12

safe to take b12 5000 mcg when one has elevated level of liver. I’m new to low level b12 and have...