Newly diagnosed with low VitB12 - Pernicious Anaemi...

Pernicious Anaemia Society

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Newly diagnosed with low VitB12

BigH70 profile image
12 Replies

Went to the GP a few months back with menopause symptoms. Mainly sleep issues, anxiety, brain fog and fatigue. The doc ordered a full fasting blood count which come back with me having low vitamin B12 (175), low vitamin D. (live in Scotland so most people are) and folic acid levels on the low side although I am not technically anaemic. I eat a diet that should be rich in Vitamin B12 so the GP has prescribed a supplement to me and I am going for repeat bloods to check I don't have an absorption problem (which I assume could be PA). Can you be diagnosed with PA without actually being anaemic though which the doc says I am not? I am a bit confused. On the supplements a month though and starting to feel better. Like a switch in my head.Anyone got advice or similar experiences

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12 Replies
Nackapan profile image
Nackapan

The menopause was my trigger.A known risk factor for b12 deficiency.

You don't need to have megobolastic anaemia to be diagnosed with PA or b12 deficiency.

Both affect absorbtion of b12 from your food .

Lots of links below to read through

BigH70 profile image
BigH70 in reply toNackapan

Thank you

Tiredycake profile image
Tiredycake

Hi, I’m sorry I don’t have any advice but I’m in the same situation as you. I have had same symptoms, menopausal, found to have low B12 and folic acid and on supplements which has raised them. Like you I eat a diet rich in B12 foods but can’t seem to absorb the B12. Had gastric biopsies etc as I also have bad reflux acid but I don’t have PA apparently. So for me I just have to take B12 and folic acid regularly and iron too. Still have brain fog and anxiety but that’s probably peri menopause and they won’t give me HRT hère in France but that’s another issue! So no advice but you’re not alone and I hope you continue to feel better with the supplements !

BigH70 profile image
BigH70 in reply toTiredycake

Thank you

Nackapan profile image
Nackapan in reply toTiredycake

I tried HRT .Only lasted 2 weeks as went into a 6 day migraine.

Gp was trying to persuade me to try for months . Mainly for migraine and other menopausal symptoms.

Alot of my symptoms were not caused by the menopause but b12 deficiency symptoms.

Tablets work for those that need a dietary too up as absorbtion slowed if caught in time . But most with absorbtion issues need b12 injections .

My diet had always been good and kept me healthy before the menopause.

On no other meds and nothing else found to treat to date

No definitive test fof PA

Some only get a positive result after many IFAB tests

So a negative does not rule it out.

Vit D deficiency the first sign for me in Hindsight .

Folate never dropped that low and very easily remedied.

Ferritin and iron took alot longer .

I think used in repair with b12 .

As ferritin only dropped after b12 started .

In theory shouldn't but bloods said differently.

Any big dose of any vitamin puts your body put of kilter .

BigH70 profile image
BigH70 in reply toNackapan

Thank you

Hockey_player profile image
Hockey_player in reply toTiredycake

I don't think that there are any tests that can be used to confirm someone does NOT have PA. The intrinsic factor test has a false negative result about 50% of the time. So if it is negative, you still have a high chance of having PA.

Narwhal10 profile image
Narwhal10

Hi Big70,

Welcome here. I do hope you join the Pernicious Anaemia Society as there are lots of myths around P.A./B12Deficiency. There are 5 organisations in the U.K. dedicated to B12D.

Please get copies of your blood results, keep a symptoms diary and make notes of times, dates and appointments.

I will point out that this,

‘Can you be diagnosed with PA without actually being anaemic ?’

There are over 200 anaemias. I am not a haematologist but I know a few. Most people mean Iron Deficiency Anaemia or Megaloblastic Anaemia.

To answer your question, yes you can have B12 deficiency in isolation or with low folate and/or low ferritin (iron stores).

Now, you commenced on [date] a supplement of [dosage] [name of medication] [oral].

Was this just B12 ? Or was folate and vitamin D addressed too ?

You have had a biological response to that [dosage] [name of medication] oral of ‘starting to feel better’ compared to original symptoms of ‘sleep issues, anxiety, brain fog and fatigue’.

We are all completely different regarding our P.A./B12 deficiency and your symptoms are yours. The reasons for deficiency are vast. Some people respond to oral cyanocobalamin whilst many of us need intramuscular injections and have been or are severely disabled.

It unfortunately is not a one size fits all.

Best wishes.

🐳

BigH70 profile image
BigH70 in reply toNarwhal10

I was given only an oral dose of cyanobalamin and advised to take a vitamin Supplement and up my red meat consumption. I decided to throw everything at it vitamin wise and now take the Cyanobalamin, vitamin D, Calcium, Magnesium, and a multivitamin with iron. After a month I already feel better. Previously I was also having other odd symptoms including headaches and I felt my dexterity in my fingers when I was typing was affected like I didn't have the same control. I have no idea if that was related but I can only explain that some kind of fog in my brain is lifting and the other symptoms seem to be subsiding. I have repeat bloods this Wednesday to check for absorbtion so will see what results I get. Blown away by so many responses to my query so thank you all

palmier profile image
palmier

Long before b12 was known, lack of b12 was only noticeable as a certain kind of anemia named pernicious anemia. Nowadays pernicious anemia stands for an autoimmune condition that leads to a severely reduced capacity to absorb b12. You can have this condition without being anemic.

BigH70 profile image
BigH70 in reply topalmier

Thank you

BigH70 profile image
BigH70 in reply topalmier

Thank you

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