B12 and folate deficiency: I was told... - Pernicious Anaemi...

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B12 and folate deficiency

Poodoo profile image
9 Replies

I was told by GP that I had b12 deficiency and iron deficiency anemia. Given 6 loader jabs for b12 (last one today) and iron tablets. Now told by another GP that I am not b12 deficient (286 reading) but that I am folate deficient so now been given folic acid 5mg a day for 3 months and then another blood test. GP thinks cause is diet but did not ask me about my diet at all. I am not celiac. I'm confused. Why would gps be giving me differing views? Do further tests need to be done. I do feel a little brighter but still very tired and irritable with tinnitus which is driving me nuts!

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Poodoo
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clivealive profile image
clivealiveForum Support

Hi Poodoo how long after the injections did they test your B12 level? There needs to be many months between them to be of any use.

Folate is "used up" processing the B12 you were having injected so that is probably why you are deficient in that.

B12 can only naturally be got from eating red meats, fish, eggs, seafood, poultry and dairy produce (& Marmite!!) whereas your Folate comes from eating leafy green vegetables, sprouts, broccoli, asparagus, beans etc although some breakfast cereals are now supplemented with folic acid.

Are you on any other medications?

I wish you well and goodnight

Poodoo profile image
Poodoo in reply toclivealive

2 weeks ago I was told I was b12 deficient and also iron deficient so jabs and iron tabs. I have only just had my 6 jabs with last one today. I was concerned that perhaps I needed more jabs due to tinnitus but told by another GP yesterday that I was not b12 deficient! She has put me on folic acid with no more b12 jabs ever again. So I am now taking iron and folic acid and have to have further blood test in 3 months. Not sure of folate or ferritin levels but b12 was 286. I'm so confused with all of this and stress makes matters worse!

Poodoo profile image
Poodoo in reply toPoodoo

Forgot to say I take lansoprozole PPI which causes loss of b12 absorption

pvanderaa profile image
pvanderaa in reply toPoodoo

Ask for a copy of all your blood tests. You are entitled to them. There are others on this site who can help interpret them.

clivealive profile image
clivealiveForum Support in reply toPoodoo

Hi again Poodoo the worst thing you can do is worry yourself sick about this.

Your first doctor thought it may be your diet - so what do you eat on a day by day basis?

Why are you being prescribed Lansoprazole? Was your second doctor aware of this because as you say it can affect absorption of B12 by lowering stomach acidity.

Apart from feeling "very tired and irritable with tinnitus" do you have any other symptoms? If so list them and monitor their improvement or otherwise so that you can show this to your doctor when you go back in three months for the blood test.

Please come back on here if you have any more questions

deniseinmilden profile image
deniseinmilden

GPs have differing views because mostly they know so little about the subject that they do incompetent things like blame your diet when they don't know what you eat!

It's maddening but have confidence in yourself and read what you can from people here.

Folate supplementation can mask the symptoms of B12 deficiency so make sure you are getting adequate B12 (every other day injections until neurological symptoms are resolved) before, and as well as, supplementing with folate.

See posts by Gambit62 , Foggyme , Sleepybunny and others who are hugely knowledgeable and helpful.

Sleepybunny profile image
Sleepybunny

"but that I am folate deficient so now been given folic acid 5mg a day for 3 months and then another blood test."

Giving treatment for Folate deficiency without treating a co-existing B12 deficiency can lead to neurological problems. See Management section in next link.

patient.info/doctor/folate-...

"I am not celiac"

It is possible to have Coeliac disease even if test for transglutaminase antibodies is negative.

See next link for more info.

coeliac.org.uk/coeliac-dise...

"Now told by another GP that I am not b12 deficient (286 reading)"

It is possible to have severe B12 deficiency with a serum b12 result that is within normal range. For more info see following....

1) BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/ click on box that says "Diagnosis of B12 and Folate Deficiency" should be on page 3, or put "cobalamin and folate guidelines" in search box.

2) BMJ B12 article. See 5th summary point.

bmj.com/content/349/bmj.g5226

3) B12 deficiency Info website

b12deficiency.info/b12-writ... Point 5 may be of interest.

4) PAS website

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769 717

5) fbirder wrote a summary of B12 documents that I have found very useful when faced with a medic who hasn't done their homework on B12. link to his summary in third pinned post on this forum (last link in list).

6) book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper. Martyn is the chair of the PAS.

7) book "Could it Be B12" by Sally Pacholok and JJ. Stuart.

"GP thinks cause is diet"

Link about causes of b12 deficiency

b12deficiency.info/what-are...

pernicious-anaemia-society....

Have you had an IFA (Intrinsic Factor Antibody) test? The IFA test can help to diagnose PA (pernicious anaemia but is not always reliable...it's possible to still have PA even if IFA test is negative.

My understanding (I'm not a medic) of the "BSH Cobalamin and Folate Guidelines" is that anybody with low b12 and/or who is symptomatic for B12 deficiency should have an IFA test. Link below to flowchart in "BSH Cobalamin and Folate guidelines" that indicates when UK doctors should order an IFA test. The flowchart also mentions Antibody Negative PA (PA where IFA test is negative).

stichtingb12tekort.nl/weten...

I am not a medic just a person who has spent years trying to find answers.

Marz profile image
Marz

There are many different types of Iron - and some are better than others. The NHS one is possibly not the best. Not able to advise you as I do not have a problem. Sometimes people forget that we are - not what we eat - but what we absorb :-)

Poodoo profile image
Poodoo

Spoken to another GP today. I am low in iron (only just) and folic acid but not b12 deficient (267). GP referring me to gastroenterologist for colonoscopy! My diet could be better but no real change and no apparent reason for low folate and ferritin. At least I will get some peace of mind hopefully.

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