How low is LOW

[Joyce61]

I had some recent blood tests following a visit to my gp due to SOB ,worsening peripheral neuropathy, headaches, brain fog, Extreme tiredness. Results Show B12 as 90 ng/L. I have been prescribed folic acid b9 for over a year. Gp now says I need B12 loading injections over 2 weeks in addition to B12 tablets. My only information is from the receptionist and google nothing from the Dr. My question is how low is low . is this level why I feel atrocious . Thank you in advance. And how soon can I look forward to an improvement . Also why. I have a reasonably heathly diet eat meat and fish along with dairy so would have though I would get all the vitamins I need from that.

[Nackapan]

Firstly get s copy of your blood results on paper.

on the right in brackets it gives the 'range'

usually a serum b12 test.

The 'in range' I think more of s guide as we all function ag different levels

For me the b12 of 106pg/mL (200-900)

 was very ill too at that level .

Got loading doses and continued since .

Did you get reason?

dietary medication operations coeliac.

lots if othef reasons.

PA being thd most common for sn abdorbtion problem.

Some have functional b12 deficiency with 'normal' b12 levels.

b1w is normally treated before folate.

another reason your symptoms may be horrid.

plenty of threads to read through on here giving lots of links

sleep bunny posts alot

hope you ard on the road to recovery

[Nackapan]

Also get . gp consult .

IFAB test

iron

vitD

Thyroid

May have all been tested.?

Some Gps atd lacking in knowledge about Pernicious anaemia or sny absorbtion problem.

Get a referral to neurology.

Also if improvements start ask for every other day b12 injections to continue as per NICE guidelines.

Your Gp shoukd read.

[Sleepybunny]

Hi,

I hope you find support and some useful info here.

I tend to post a lot of information so I suggest taking a week to read through it all so it's not so overwhelming.

Some links I post may have details that could be upsetting so you may want to read through this with someone who's supportive and interested in helping you.

I'm not medically trained just someone who suffered for years from unrecognised and untreated B12 deficiency and who wants people to have the info they need in case they have doctors who don't understand B12 deficiency.

"Results Show B12 as 90 ng/L"

If that result is for serum (total) B12 that seems really low to me.

Have you had other low B12 results in the past?

"I have been prescribed folic acid b9 for over a year."

"Gp now says I need B12 loading injections over 2 weeks in addition to B12 tablets. "

What strength B12 tablets have you been taking?

What strength folate?

It's vital that a person with both B12 and folate deficiency has both deficiencies treated adequately. Treatment with b12 would be started first.

Treating a folate deficiency without treating a co-existing B12 deficiency can lead to neurological problems. See BNF, BSH and NICE CKS links in this reply.

Inadequate treatment of B12 deficiency increases the risk of developing permanent neurological damage including damage to spinal cord. This can also happen with folate deficiency but I think this is rarer.

Have you got recent results for folate, ferritin (and any other iron tests) and Vitamin D?

Forum members often report deficiencies in these as well as B12.

Thyroid

Many forum members here also have thyroid issues.

I suggest putting any thyroid results along with an outline of your story on Thyroid UK forum on Health Unlocked.

UK GPs often only test TSH which won't give a full picture of thyroid function.

There are other thyroid tests a GP or specialist can order.

thyroiduk.org/thyroid-funct...

Link about "What to do next" if B12 deficiency suspected or recently diagnosed

b12deficiency.info/what-to-...

PA

Have you been tested for PA (Pernicious Anaemia)?

It's possible to have more than one cause of B12 deficiency at the same time.

If you suspect PA or have a PA diagnosis, worth joining and talking to PAS who can offer support and pass on useful info.

PAS membership is separate to membership of this forum.

You do not need a confirmed PA diagnosis to join PAS.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

PAS support groups in UK

pernicious-anaemia-society....

Testing for PA

pernicious-anaemia-society....

I've also read that a pepsinogen test may be useful.

PAS website has useful leaflets/articles and a page for health professionals that your GP may find interesting.

pernicious-anaemia-society....

pernicious-anaemia-society....

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Link above has letter templates covering a variety of situations linked to B12 deficiency.

Point 1 is about under treatment of B12 deficiency with neurological symptoms present.

1) Letters avoid face to face confrontation with GP and allow patient time to express their concerns effectively.

2) Keep letters as brief, to the point and polite. Harder to ignore a letter in my opinion.

3) When a letter is sent to GP, worth including a request that GP practice sends written confirmation to letter writer that they have received letter.

Proof a letter was received may be useful if there is a need for a formal complaint in the future.

4) My understanding is that in UK, letters to GPs are supposed to be filed with medical notes so are a record that an issue has been raised. I included a request in letters that a copy of letter was filed with medical notes.

Useful to have a paper trail in case there is a need for a formal complaint. Keep copies of any letters sent or received.

5) Letters could contain some of the following

relevant test results

date of diagnosis

relevant family/personal medical history

quotes from UK B12 documents

requests for referrals to relevant specialists

The shorter the letter, the more likely the GP is to read it in my opinion.

NHS Complaints

patients-association.org.uk...

Care Opinion website

People can leave reviews of their health experiences.

careopinion.org.uk/

Local MP/devolved representative may be worth talking to if struggling to get adequate treatment.

A few go to Press/other media if unhappy with treatment.

Newspaper article about patient struggling to get B12 treatment in Scotland

eveningtelegraph.co.uk/fp/i...

And a positive follow up story

eveningtelegraph.co.uk/fp/b...

I will be adding more to this thread when I have time.

[Sleepybunny in reply to Sleepybunny]

I think that there is a good chance of improvement providing you get enough B12.

Some UK forum members resort to treating themselves if NHS treatment is not enough.

I feel this is a last resort but I had to when NHS refused to treat me.

[Joyce61 in reply to Sleepybunny]

I have been looking over my history in feb 2021 my b12 was 200ng/L and folate 2.2ug/L. thats when I started the folic acid 1 a day 5mg. I have just read that treating with this can mask the B12 issue. a little bit annoying if thats true

[Technoid in reply to Joyce61]

You're quite correct, the folic acid would correct the anemia but allow the neurological damage from B12 deficiency to progress unhindered. If a patient presented with B12 symptoms at 200 and low folate, and their doctor prescribed only 5mg of Folic Acid and ignored low B12 I would have the doctor fired on the spot for malpractice and endangering the patient. Correction of folate should happen after B12 treatment starts as there are reports of folate treatment alone not just masking but precipitating neuropathy. That folate alone may exacerbate B12 neuropathy is not fully agreed upon in the literature but there are enough warning signs to make it clear that the safe approach is that B12 should be treated first then folate.

[Sleepybunny]

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

b12deficiency.info/who-is-a...

Next link about causes is from a Dutch B12 website

b12-institute.nl/en/causes-...

Symptoms of B12 Deficiency (folate deficiency also mentioned)

pernicious-anaemia-society....

b12deficiency.info/signs-an...

cks.nice.org.uk/topics/anae...

b12-institute.nl/en/symptom... (B12 Institute Netherlands)

Symptoms of Peripheral Neuropathy (damage to peripheral nerves)

nhs.uk/conditions/periphera...

Peripheral neuropathy can be associated with B12 deficiency and sometimes with folate deficiency.

PAS article about SACD, sub acute combined degeneration of the spinal cord

pernicious-anaemia-society....

Blog post from Martyn Hooper's blog about PA and B12 deficiency, mentions SACD

martynhooper.com/2010/09/21...

Neuro symptoms

Do you have any neuro symptoms?

These are a few of the ones I had...

tingling

pins and needles

electric shock sensations

burning sensations

insect crawling sensations

memory problems

balance problems

clumsiness

dropping things

bumping into things

problems with proprioception

Proprioception is awareness of where the body is in space.

Worth looking into, search online for "proprioception B12 deficiency" as I always struggle to explain it.

If your balance is worse when eyes closed, it's dark or your view of surroundings is blocked then that is suggestive of possible problems with proprioception.

For example I used to fall off the pavement when someone walked directly towards me because my view of surroundings was blocked.

tinnitus (noises in the ear)

migraine

periodic limb movements

restless legs syndrome (RLS)

eyelid flickering

muscle twitching

There were others as well.

Make sure your GP has a list of all your neuro symptoms and definitely any that affect your spinal area.

Referrals

If neuro symptoms present, have you been referred to a neurologist?

NICE guidance Suspected Neurological Conditions

nice.org.uk/guidance/ng127

NICE when to refer B12 deficient patient to neurologist/haematologist/gastro enterologist

cks.nice.org.uk/topics/anae...

Other UK B12 documents/articles

NHS article about B12 deficiency (simply written)

nhs.uk/conditions/vitamin-b...

BSH Cobalamin and Folate Guidelines (aimed at health professionals)

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

Summary of BSH Cobalamin and Folate Guidelines

pernicious-anaemia-society....

Diagnostic flowchart from BSH Cobalamin and Folate Guidelines which mentions Antibody Negative PA.

stichtingb12tekort.nl/engli...

BNF link below outlines two patterns of treatment in UK for B12 deficiency.

1) for those without neuro symptoms

2) for those WITH neuro symptoms

BNF Hydroxocobalamin

bnf.nice.org.uk/drug/hydrox...

If you have neuro symptoms, my understanding is that you should be on the second pattern , for those with "neurological involvement" .

GP has access to this info in online BNF, will also have a BNF book and can look in Chapter 9 Section 1 subsection 2.

NICE CKS B12 deficiency and folate deficiency

cks.nice.org.uk/topics/anae...

There are currently new NICE guidelines in development for Pernicious Anaemia and B12 deficiency. These should be published in 2023.

nice.org.uk/guidance/indeve...

If you click on "project documents" then on "consultation comments and responses" it gives a good insight into current issues around diagnosis and treatment (over 40 pages).

BNF Folic Acid

bnf.nice.org.uk/drug/folic-...

See Cautions section in above link which says that folic acid should never be given on its own for PA (Pernicious Anaemia) or other megaloblastic anaemias caused by Vit B12 deficiency as this may lead to SACD, subacute combined degeneration of the spinal cord.

Local B12 deficiency guidelines

I urge UK forum members to find out what's in their local B12 deficiency guidelines.

Read blog post below if you want to know why.

b12deficiency.info/gloucest...

I sincerely hope you are not in the area discussed in above blog post as it has a poor reputation on this forum as to how b12 deficiency is managed.

Coeliac disease

Have you been tested?

Check guidelines below. they suggest anyone with unexplained b12, folate or iron deficiency should be tested.

NICE guidelines Coeliac Disease

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

If you were tested in past and had a negative result, check doctors followed recommended diagnostic process....some don't.

People with coeliac disease may get a neagtive result in coeliac test if

1) they have IgA deficiency

IgA is an immunoglobulin.

2) they were not eating enough gluten prior to blood being tested

More info on Coeliac UK website

coeliac.org.uk/home/

Two useful B12 books

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).

BNF info in book is out of date. See BNF hydroxocobalamin link.

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)

Very comprehensive with lots of case studies.

Misconceptions

A lot of us on this forum have met health professionals who lack understanding of B12 deficiency.

I think it's useful to know some of the common wrong ideas health professionals may have in case you meet ignorance.

B12 article from Mayo Clinic in US

(Aimed at researchers and health professionals)

The Many Faces of Cobalamin (Vitamin B12) Deficiency

ncbi.nlm.nih.gov/pmc/articl...

Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.

Misconceptions about a B12 deficiency

(From Dutch B12 website - units, ref ranges, treatment patterns may vary from UK)

stichtingb12tekort.nl/engli...

Blog post that mentions misconceptions about B12 deficiency

b12deficiency.info/a-b12-se...

Diagnosis and Treatment Pitfalls(From B12 Institute in Netherlands - units, ref ranges, treatment patterns may vary from UK)

b12-institute.nl/en/diagnos...

[Sleepybunny in reply to Sleepybunny]

There is a petition to get injectable B12 available over the counter in UK.

change.org/p/dr-june-raine-...

Tracey Witty of B12 Deficiency Info website has campaigned on this issue for 8 years.

b12deficiency.info/eight-lo...

Please pass on any of the info I've posted to other people you think might have B12 deficiency.

I suspect it's massively under diagnosed in UK.

Misdiagnosis of B12 deficiency as other conditions

b12deficiency.info/misdiagn...

[EiCa]

i had very frequent episodes of shortness of breath during the night for years. It was scary and awful. After being dismissed as “anxiety”, with a full work-up of heart and lungs, I started pursuing the B12 deficiency path. I still get it occasionally but it is much less frequent and intense. I am sure it will be completely gone soon as I heal more. This is a huge win for me. Someday I plan to write all the doctors, who failed to test my B12 level, a victory letter…my tests don’t lie. My SOB was not anxiety. My anxiety was caused by the doctors. I hope you pursue B12 supps, and shame on your doctor for advising folic acid supplementation and not B12 at all.

Best of luck on your journey.