B12 reading of 87 and Folic Acid defi... - Pernicious Anaemi...

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B12 reading of 87 and Folic Acid deficiency

Fatigueisme profile image
15 Replies

I've been feeling bad for some months now , fatigued, palpitations, extreme anxiety, breathlessness, depressed but put it down to long history of fighting MRSA infections from leg injury and operation. I've just been told today my VB12 is low at 87 and I have a folic acid deficiency, is that a low reading and would it cause these symptoms?

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Fatigueisme
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clivealive profile image
clivealiveForum Support

Hi Fatigueisme

Having been told that you are B12 and Folate deficient what treatment are you being offered/given?

Symptoms of B12 deficiency tend to develop slowly and may not be recognised immediately. As the condition worsens, common symptoms include:

Weakness and fatigue

Light-headedness and dizziness

Palpitations and rapid heartbeat

Shortness of breath

A sore tongue that has a red, beefy appearance

Nausea or poor appetite

Weight loss

Diarrhoea

Yellowish tinge to the skin and eyes

If low levels of B12 remain for a long time, the condition also can lead to irreversible damage to nerve cells, which can cause the following symptoms:

Numbness and tingling in the hands and feet

Difficulty walking

Muscle weakness

Irritability

Memory loss

Dementia

Depression

Psychosis

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 and your B12 level is below the bottom of the range.

You may well need to supplement with folic acid.

Make a list of your symptoms and present this to your doctor and ask him to treat you according to your symptoms and (perhaps) even 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...

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 a medically trained person but I've had Pernicious Anaemia (a form of B12 deficiency) for more than 46 years.

I wish you well.

Fatigueisme profile image
Fatigueisme in reply toclivealive

Hi Clivealive

Thank you for the response.

They've put me on to Folic Acid tablets and say I'll need B12 supplement but they want me to monitor my blood pressure in a morning and on a night and for 2 weeks first and provide that information.

Because I have been feeling so fatigued and I've got an almost constant ringing/whistling noise in my head and I get pins and needles in my hands, I'm just concerned about the possibility of long term nerve damage as suggested by your post and others I've read.

clivealive profile image
clivealiveForum Support in reply toFatigueisme

Please do as fbirder says and demand treatment by B12 injections.

Polaris profile image
Polaris in reply toFatigueisme

There is a lot of research to prove that Folic acid should never be taken while B12 is very low as it gets 'trapped', cannot be used, and could make neurological symptoms worse :

"High levels of folate are normally okay as long as your vitamin B12 level is also normal. Cells need vitamin B12 to use folic acid and when vitamin B12 levels are too low, folic acid cannot be used and builds up in the blood." :

gbhealthwatch.com/Nutri...

.............

youtu.be/BvEizypoyO0

Haemotologist's quote from the above I:

"If you treat someone with B 12 def. with folic acid, you can either precipitate neurological abnormalities or, if the patient already has neurological abnormalities, you can make them worse. So folic acid should never be given empirically unless the B12 status is normal."

cmim.org/pdf2014/funcion.ph.... :

"If there is noncomitant B12 and folic acid deficiency, then B12 must be started first to avoid precipitating sub acute degeneration of the spinal cord.

fbirder profile image
fbirder

Your B12 is very, very low. You need supplements now, in the form of a course of injections. You need three a week for at least three weeks.

And you need them now!

Some people think that taking folic acid with an untreated B12 deficiency can exacerbate the neurological degradation caused by the low B12. It may not be true, but it’s better not to take the risk. Tell them you want B12 injections to start ASAP.

Fatigueisme profile image
Fatigueisme in reply tofbirder

Thanks for the response, obviously some of what I'm reading is quite worrying. If I start on the injections next week, have you any idea how long it takes to start feeling improvements? Even as I type this I'm getting tingling and pins and needles in my left hand, this has been going on for several months on and off, in both hands and sometimes briefly numbness in my lower leg.

My concern is that some of the sites talk about irreversible damage, is that only in extreme cases?

Gambit62 profile image
Gambit62Administrator

what was the test? - 87 is very low if the test was serum B12 but would be a good result well in range if the test was active B12.

Fatigueisme profile image
Fatigueisme

The Doctor didn't tell me, I had no real idea about this before reading information on this site. It was my first blood tests for the fatigue symptoms which I had been told previously was probably down to stress so I assume the serum B12, the Dr said my reading should be over a hundred or higher so this was quite low.

I didn't know enough to ask any questions as this was the first time this had been raised, I will request a copy of the results next week. I'm back for a further blood test next Wednesday, should I try and get the results prior to then?

After the blood test was returned to the GP's they wrote to me to ask me to attend for an appointment which as classed as 'non urgent' but they booked me in within a couple of days. Because I've had this ringing in my head (like a high pitched whistling) for a few months, I've felt really stressed and depressed, I feel like I'm struggling to think straight and my vision is quite blurry when reading, I've been getting quite concerned.

Gambit62 profile image
Gambit62Administrator in reply toFatigueisme

sorry - didn't see your reply earlier - from what you describe the test result was definitely serum B12 - in my opinion your GP is actually mistreating you at the moment - with a level that low you should definitely have been started on B12 injections - regardless of the cause of the B12 deficiency as your serum levels need to be raised as a matter of urgency.

Whilst most damage will reverse there is a risk of permanent damage if neurological symptoms/memory issues are allowed to go untreated for more than 6 months so they shouldn't be delaying things any further. I would be inclined to ring the surgery - or ask a friend to ring the surgery with you present and try to get through that you need B12 shots as a matter of urgency to minimise the risk of any permanent damage and to start healing. If they are dithering because you don't have any signs of macrocytosis then you need to point out that this is a symptoms not a cause and it isn't present in 25% of people when they first present with B12 deficiency - source for this is the BCSH standards on diagnosis and treatment of cobalamin and folate deficiencies

onlinelibrary.wiley.com/doi...

Your GP (assuming UK) can access this through the BNF

Fatigueisme profile image
Fatigueisme

Gambit 62, thanks for the advice.

After everything I've read on this in the mast few days I completely agree.

Currently the plan is another blood test on Wednesday, which will be another week for results and by then I would have been taking Folic Acid supplement for 2 weeks, without any B12 supplements or injections. I've stopped taking the tablets (only taken 2) and I will call the surgery in the morning to state my concerns. I have a friend linked to the medical profession who said the same and can get me some B12 injections if necessary but I assume I need to make sure the Dr's properly diagnose me before considering that.

I can't understand when my reading was so low and I've been feeling so ill, why the DR sent me away to measure blood pressure twice daily for a fortnight before considering any medication??

Thank you, this is a steep learning curve.

terrybraden profile image
terrybraden

Hi Fatigueisime,

I suggest that you do something ASAP for your deficiency. I used (and still do) transdermal B12 patches and sublinguals as well. (Methylcobalamin). If your doctor will give you injections that’s great. Some people choose to self-inject. That’s ok too.

I had the symptoms that clivealive mentioned, I don’t know for how long. But as I told another person on this forum, once I started supplementing I recovered completely. I did other things too, I changed my diet. I eliminated gluten and dairy. Have your ferritin and thyroid checked along with your folate level. Its like clivealive says, a complex interaction between them all.

Please do not lose hope. You have come to the right place for advice. The people on this forum are very knowledgeable and helpful.

Fatigueisme profile image
Fatigueisme in reply toterrybraden

Hi terrybraden, thank you for the response, getting in to the Doctors to get a course started is not proving easy. I have found someone who will give me the injections privately and I am going to see them today.

I assume the next step is to push the Doctors to then attempt to diagnose the underlying cause for the low reading.

It should not take a week for blood tests to be returned. Are you in England? If so have you asked your practice to have access to your records online. You are entitled to have that if you ask and get registration details. My blood test results are usuall back within 2 days, and I can look at them online.

Fatigueisme profile image
Fatigueisme

Thanks Chris193, I got told this time 2 days after I asked numerous questions of the person taking the sample following what I have read on this site. I am told that their standard practice is 6 injections for 2 weeks then once every 12 weeks. I got the results from my original test and my the test was a serum B12 with a range of 110 to 1000 pmol and this is where my reading was 87.

I took matters into my own hands by getting my first injection privately yesterday and I'm going to have an injection every other day until I see the DR next week.

TomPlatz profile image
TomPlatz

Hi guys! what about B12 at 950 and folic acid at the very low end?

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