Pernicious Anaemia Society
16,348 members11,365 posts

Advice please

Ferritin - 31 (30 - 400)

Folate - 2.2 (2.5 - 19.5)

Vitamin B12 - 197 (190 - 900)

Vitamin D total 25 OH - 55.3 (50 - 75 suboptimal)

Intrinsic factor antibodies - positive

These were checked in April 2018. I take 3000iu vitamin D since September 2017 and 1 iron tablet since February 2017. GP said folate only just under range, no action required. My folate has been under range twice. Also have low calcium.

Symptoms list from the pernicious anaemia site -

Shortness of Breath

Extreme Fatigue

Brain Fogs

Clumsiness/Lack of coordination

Brittle, flaky nails & Dry Skin

Neurological Symptoms

Balance Problems

Dizziness/Feeling Faint

Numbness/Tingling/Pins and Needles

Burning Legs and/or Feet

Neuropathic Pain/Fibromyalgia

Vertigo

Tinnitus

Sensory Impairment

Behavioural Changes

Irritability/Frustration/Impatience

Sudden Mood Swings

Depression

Loss of Libido

Sleep Disturbance

Confusion/Dementia

Oral Cavity Symptoms

Mouth Ulcers

Swollen, ‘Beefy’ Tongue

Cracked Tongue

Gastrointestinal Symptoms

Sudden Unaccountable Diarrhoea

Poor Digestion

Loss of Appetite/Weight Loss

Other Reported Symptoms

Hair loss

Premature grey hair

Menstrual Problems

Infertility

Vision Problems

Incontinence

I have been told my diet is awful because I eat a lot of chocolate/sugar. I get a lot of trouble swallowing and this is why my diet is often loaded with sugar and not enough meat (chicken and lamb I find are ok) and I do eat enough vegetables and fruit when I can - 1 banana per day, handful of spinach/kale, 1 orange per day if not a banana, fish once a week provided it is in a sauce/dressing.

I don't think my problems are diet related because of the intrinsic factor antibodies result, advice welcome, I also have Hashimotos, thank you

5 Replies
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Hi Jaye8

Are you not being given B12 injections for your P.A?

If not make a list of your symptoms and present this to your doctor and ask him to treat you according to your symptoms and start you on loading doses "until there is no further improvement" according to the N.I.C.E guidelines below. Click on the link, then on "Scenario: Management" and scroll down to "Treatment for B12 deficiency"

google.co.uk/url?sa=t&rct=j...

P.A. is for life and so too are the B12 injections.

It is also important that your Folate level is monitored as this is essential to process the B12.

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

Replacing B12 will lead to a huge increase in the production of blood cells and platelets (which occurs in the bone marrow) and can lead to rapid depletion of folate and iron stores; this can then limit the expected recovery of Haemoglobin . Both iron and folate may be needed.

If possible take someone with you who can validate your neurological symptoms as the doctor is less likely to pooh pooh you in front of a witness.

I am not saying that this is an easy thing to do but try to stay calm, write out what you want to say and keep to the script and be confident that you are "in the right" and your facts are correct.

I am not a medically trained person but I've had Pernicious Anemia (a form of B12 deficiency) for more than 46 years.

I wish you well.

1 like
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Thanks, I am receiving B12 injections once every 3 months.

Reply

How much is your b12 level one injection every 3 months is Not enough at all

Reply

Jaye8 - I missed the IFA positive result in your earlier post on TUK.

IFA positive means you do have PA

This is a link to the BCSH guidelines on diagnosis and treatment of cobalamin and folate disorders

onlinelibrary.wiley.com/doi...

your GP, assuming you are UK based, can access this through the BNF

things to point out

a) serum B12 is not a gold standard test and will miss 25% of people who are deficient if taken as a single measure - symptoms are important

b) macrocytosis (larger rounder red blood cells) is a common symptom of B12 deficiency/PA but it isn't a defining characteristic. It isn't present in 25% of people when they first present with B12 deficiency.

c) you have neurological symptoms so treatment should not be delayed

d) treatment for folate deficiency should start 24-48 hours after treatment for B12 deficiency.

It might be best to do this in writing and then follow up with an appointment.t

Unfortunately it is not uncommon for GPs to have a very poor understanding of PA and how it and B12 deficiency really work and often think that anaemia has to be present. They can also be unaware of the links to other vitamin and mineral deficeincies - including folate and iron - though iron deficiency is also common amongst hypothyroid patients without PA. If you are both iron and B12/folate deficient it is even more likely that there won't be clear signs of macrocytosis in a full blood account as the iron deficiency will tend to make red blood cells smaller and theB12 and folate deficiencies will make them larger - so averages will not give a clear reflection of what is going on.

Reply

No point in anyone rubbishing your diet---- positive for intrinsic factor means you have PA.. With the best diet in the world you won't feel well until you have your loading injections followed by regular injections.

I'm not a fan of big meals and I'm veggie so I gave a lot if smoothies. You can get fibre and vitamins into them with milled seeds from Lidl. Use more veg than fruit to avoid too much sugar and they're really filling.

I hope you start to feel much better when you start your B12 injections.

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