Folate barely within range - Pernicious Anaemi...

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Folate barely within range

Katiea100 profile image
10 Replies

I have b12 injections every 2 months at the advice of my haematologist, I have it in writing that this should be lifelong. If I have them every 3 months I become very symptomatic for the last 4 weeks and struggle to function.

Recently I’ve started to feel unwell. Dizzy spells, extreme mood swings, cold hands and feet. So my dr did a range of blood tests, including ferratin, thyroid, liver and kidney function, diabetes. Along with b12 and folate.

I expected my b12 levels to be high since I had my injection only 12 days ago.

The bloods have of course flagged high b12, in the 2000 mark, so my dr has asked to see me next week.

My folate was 4.2 in a range of 3.6 - 26. Could the fact my folate is on the low end of ‘normal’ be the reason I am feeling so ill? Is it advisable to take a folate supplement to ensure my body can use the b12 fully?

Any advice gratefully received!

Thank you

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Katiea100
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10 Replies
Nackapan profile image
Nackapan

I take folic acid daily. The doctor okayed ot at 400mg.There is a post on here with symptoms on folate defiency. Iron folate and B12 work together. Hope your other blook test results were okay and you start to feel better soon.

Katiea100 profile image
Katiea100 in reply toNackapan

Thanks a lot, I have an appointment next week so I will ask him if I should do the same. My other results, including iron were fine thanks. I’ve been on the injections for 4 years now so know that something is definitely up somewhere as I normally feel perfectly well on my every 2 month doseage.

wedgewood profile image
wedgewood in reply toKatiea100

It’s also possible that you now need more than 2 monthly B12 injections. But try the folic acid supplement first , and see if it helps.

It would be difficult to get more regular B12 injections , that’s why so many of us are obliged to self-inject ,

.

Katiea100 profile image
Katiea100 in reply towedgewood

Thank you, I definitely will try it. The letter from my haematologist does say that if I still feel ill when having them every 2 months that I should be allowed a two week loading dose every 6 months. Until now I’ve been perfectly fine on the 2 month doses. So i can hopefully fall back on the loading doses if the folate doesn’t do the trick! Thank you for your advice!

fbirder profile image
fbirder in reply toNackapan

I hope you meant 400 mcg, not mg. 😀

Nackapan profile image
Nackapan in reply tofbirder

Yes ! My mistake or autocorrect. I doubt you can get 400 mg

Katiea100 profile image
Katiea100 in reply toNackapan

Sorry yes :) it’s 400 ug so 0.4 mg

fbirder profile image
fbirder in reply toNackapan

Oooh, I'm sure there are some people that would try.

clivealive profile image
clivealiveForum Support

Hi Katiea100 You may be "entitled to have your B12 injections every two months according to the updated B.N.F. guidelines below:

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

"Pernicious anaemia and other macrocytic anaemias with neurological involvement

By intramuscular injection

For Adult

Initially 1 mg once daily on alternate days until no further improvement, then 1 mg every 2 months."

There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.

Symptoms of a folate deficiency can include:

symptoms related to anaemia

reduced sense of taste

diarrhoea

numbness and tingling in the feet and hands

muscle weakness

depression

Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body.

I am not a medically trained person but I've had Pernicious Anaemia (one of many causes of B12 deficiency) for more than 46 years.

I wish you well.

Katiea100 profile image
Katiea100 in reply toclivealive

Thank you for taking the time to reply! I currently have them every two months, so I think it’s the lack of folate that seems to be making me feel so rough. I Appreciate your help :)

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