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Should Folate be treated with folic acid with out B12 injections

Pascha1 profile image
4 Replies

I asking this for a friend who is not yet in this group, I will try to get her to join up soon as think she will learn lots from all you who know much more than most of gps in the uk....

so any help will be appreciated as know very knowledgeable people on here :)

Should Folate be treated without B12 when their is strong evidence of neuropathy I suspected PA

Blood test results are

Folate 1.5 under range 3.1- 20 ugl

B12 serum 316 range 187-883ng

Fullblood count

whitecalls 7.5. range (3.5-9.2)

Heamogloben 114 Low. range (125-155 g

Platelets 244 range (140-400)

Red cells 3.8. range (3.9- 5.1

Heamocrit 0.356 Low Range (0.37 0.46

MCV 92.3 range (80-106

MCH 29.5. (28.5 - 33 pg

Neutrop 4.6. ( 1.7-6.2)

Lymphocytes. 2.3. 1-3.4

Monocytes. 0/56 . 0.2- 0.8

Eosinphil . 0.15 0.0 -/0.4-

Basophll. 0.08. 0.0-1.1

Nuecleated RBC 0.00.

comment FBC Thisis a validated assay but not currently UKAS accredited

She has unexplained neuropathy, many signs of B12 deficiency, History Hashimotos iron deficiency although not tested this time not sure why

she has history of family having PA

I know the FBC show some sort of anaemia

she went to GP testerday and they have given her folic acid 5mcgs to take daily

I fell with all her symptoms they should maybe of given her a trial of B12 injections I have never heard of treating folate deficiency on own, I may be wrong on her needing b12 but thought I would ask you lovely knowledgable peeps on here what you think is right as know you lot know more than the average GP

I would appreciate any info you can give friend and if you have evidence to what you say if she does need anything else so she can go back to GP with it,, :)

My feelings are they should tested ferritin iron sores and maybe given a trip of B!2 with folate,,I just never heard of isolated low Folate treated with folic acid,, especially when she is showing signs of PA for years, she also has been on PPIs for many years

So all answers will be appreciated,, I am out for a wile so will check back inl later.

I thank you all for taking time to read this message and thank you in advance for any info on above bloods

Pascha :)

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Sleepybunny profile image
Sleepybunny

Hi,

I have read that it's important to treat any co-existing B12 deficiency at same time as having folate treatment.

Both folate and b12 deficiency can lead to macrocytosis (enlarged red blood cells).

Macrocytosis is one of the signs that GPs look for in people with suspected b12 deficiency although lots of people with b12 deficiency do not have macrocytosis.

If folate treatment is given without also treating a co-existing B12 deficiency then the red blood cell size may appear to be normal size and the effects of B12 deficiency on RBC will be masked and neurological damage from B12 deficiency may continue.

See next link about folate deficiency which mentions need to treat co-existing b12 deficiency. See "Management" section.

Folate Deficiency

patient.info/doctor/folate-...

I recommend your friend joins and phones PAS (Pernicious Anaemia Society) if she suspects she has PA especially if she's in UK. They can suggest info to pass on to GP.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no 01656 769717 answerphone

PAS support groups in UK

pernicious-anaemia-society....

There are 16 PAS support groups in UK. You do not have to have a confirmed PA diagnosis to got to meetings but do need to be a PAS member. Good source of emotional support and local info about helpful GPs etc.

Blog post about how PAS can support PAS members seeking PA diagnosis

martynhooper.com/2017/06/24...

PA tests

Intrinsic Factor Antibody (IFA) test

labtestsonline.org/tests/in...

Parietal Cell Antibody (PCA) test

labtestsonline.org/tests/pa...

PCA is not recommended as a diagnostic test for PA in UK.

Both these tests can be unreliable.

It is still possible to have PA with a negative result in IFA or PCA test.

About 50% of people with PA test negative on IFA test.

About 10% of people with PA test negative on PCA test.

B12 Deficiency Info website

b12deficiency.info/

BSH Cobalamin and Folate Guidelines

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

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

Flowchart outlines process for diagnosing PA and Antibody Negative PA in UK

Has she been tested for Coeliac disease?

NICE guidelines Coeliac Disease (2015 version)

nice.org.uk/guidance/ng20/c...

I've written a very detailed reply in another thread on this forum with links to lots of other B12 info eg

more UK B12 documents

more B12 websites

B12 books

B12 deficiency symptoms

causes of b12 deficiency etc.

Might be worth her having a look.

See link below.

healthunlocked.com/pasoc/po...

I am not medically trained.

If she feels she's not being treated appropriately I suggest looking at this next link

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Pascha1 profile image
Pascha1 in reply to Sleepybunny

Thank you so much for all this Info, I have passed it all on, the lady who justsnt it to says a huge thank you and shes reading and sending her GP all info for her appointment next week :)

Sleepybunny profile image
Sleepybunny in reply to Pascha1

Hi again,

Glad she found the info helpful.

A bit I forgot to mention is that b12 ( and folate) deficiency can lead to macrocytosis but iron deficiency can lead to microcytosis ( smaller red blood cells RBC).

A person with both iron and b12 (and/or folate) deficiency may appear to have normal size RBC on Full Blood Count tests because effects of iron deficiency on RBC is masking effects of B12/folate deficiency.

Sometimes a blood smear (also known as blood film) may show both macrocytic and microcytic RBC in someone with iron deficiency plus B12 (and/or folate) deficiency).

Link about blood film

patient.info/doctor/periphe...

At her appointment, it might be worth her mentioning to GP that PAS website has a section for health professionals and it is free for them to join PAS as associate members.

pernicious-anaemia-society....

If she is a PAS member she might be able to arrange for her GP to talk to PAS but she'd need to liaise with PAS first.

I suggest she talks to PAS before her appointment who can guide her on best info to pass onto GP. They'll probably suggest their leaflet " An Update for Medical Professionals: Diagnosis and Treatment" plus other info.

pernicious-anaemia-society....

Does she keep a symptoms diary? This can be useful evidence and may also be worth considering filming neuro symptoms if they are visible eg periodic limb movements, flickering eyelids, twitching muscles etc.

Probably worth her having a symptoms list with all her symptoms ticked and any extras added to list. I suggest she records all her neurological symptoms. She could use PAS list below and add any extras to that.

pernicious-anaemia-society....

May also be worth having a typical weekly diet of meals/drinks written out in case GP thinks any B12 deficiency symptoms are due to diet.

Doe she eat plenty of B12 rich food eg meat, fish, shellfish, dairy, eggs, foods fortified with B12? A vegan or vegetarian diet may be a risk factor for developing B12 deficiency.

She may get asked about alcohol intake as this can have an impact on B12 levels in some cases.

You mention a family history of PA. PA is an auto immune disease and having auto immune diseases in the family can increase the chances of developing other auto immune diseases.

I hope GP does tests to check for PA and other auto immune diseases. There are forum members on here with Thyroid disease, Coeliac disease, Lupus, Hughes syndrome also known as Antiphospholipid syndrome, diabetes plus others. Many conditions have symptoms that overlap with those of B12 deficiency.

Has she had thyroid tests? In UK GPs often only test for TSH which won't give a full picture of thyroid function. There are other tests that GP can order, see links underneath.

thyroiduk.org/tuk/testing/t...

thyroiduk.org/tuk/testing/i...

I suggest she puts any thyroid results she has on Thyroid UK forum on HU. It's a very active, supportive forum.

She also needs to be aware that some GPs don't take kindly to assertive patients and that GP /patient relationship can come under severe strain.

Does she have someone supportive who can go with her? Even better if they have read up about B12 deficiency/PA. It's my impression that Gps are sometimes kinder with a witness present.....

Pascha1 profile image
Pascha1 in reply to Sleepybunny

HI sorry missed this but will forward now Thank you,, Yes I got her in with an ENDo he added T3 before he knew her bloods so he could see she was suffering, but lowered her T4 and she was at bottom end of range, she has an appointment in New year,, he wasnt really interested in her vitamins but I pushed for him to test and thats the results above, , I will go back to Endo with her in the new years think she could do with an increase in meds,, TSH was 2.5. and T4 was low and T3 was 2.9 which was bottom of range 2.9-5.9 he had lowered T4 from 150 to 100 added T3 20mcgs so she will still be under medicated probably///

Thank you so much for all your help, I have passed info on and the lady said Thank you very much :)

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