B12 Levels. Please Help: Just wondering... - Pernicious Anaemi...

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B12 Levels. Please Help

RiskiestEnd profile image

Just wondering if anyone can help please as can’t get any info from my doctor and don’t see the immunologist until 6th August.

For the last two weeks I have felt like I did before my loading doses in May. So I called to get the results of my B12 from last week - before B12 injections my levels were 121ng/L. Bloods from last week were 1068ng/L.

Anyone else had anything similar. Presuming since the 19th they couldn’t have dropped massively, yet I’m just like I was before the injections and getting increasingly worse. Should I try self injecting to see if this makes any difference?

15 Replies

Your B12 will be high such a short after your loading doses. The NHS guidelines say there is no point in having blood tests after having injections.

As for feeling worse, I did not feel better until about my 11th injection.

Others, better qualified, on here will give you advice I'm sure.

Thank you for your reply. Did you have 11 for loading doses? My gp would only give me six despite the fact not all symptoms had gone. Palpitations and tingling has never stopped, and now getting worse.

No mine would only give me 5 and then a blood test. ( Some areas do not follow the NHS guidelines) and then refused me any more. So I went to a private doctor.

This has happened to many people on here. GP's seem to know little about PA and B12 deficiency so those who cannot get treatment self inject or go private. I do both.

They are such a nightmare. May I ask who you went privately with please?

B12 levels in the blood seem to have zero relationship to symptoms after treatment has started. That’s why sensible doctors don’t test, because it’s a waste of time and money.

You could try keeping a diary of your symptoms to see how they vary with your injections, but it’s likely your doctor will ignore it and refuse to give you injections with the required frequency.

In which case, self-injection might be the best option.

I would go see my doctor ASAP and ask for more frequent jabs. If they refuse mention that you can get injectable B12 in Germany without a prescription and that you’re considering ordering some for yourself.

RiskiestEnd profile image
RiskiestEnd in reply to fbirder

Hi Fbirder. my doctor is now sending me for a folate test (and yet another B12 test). Having a B12 injection on Monday and on Monday they will book in the rest. Still remains to be seen how many they will give me.

I did point out that retesting of B12 doesn’t mean much. It was a battle, but as soon as I mentioned ordering, and putting in a complaint that they were not following NICE guidelines I got a little way. Let’s hope they now actually follow the guidelines.

Thanks so much for your help

HI there - I never had palpitations with my many other B12 deficiency symptoms, but after a while, when I began to also become folate deficient, then started the shortness of breath and terrible palpitations. I bet if you start folate supplementing, it will help. Take note of how you feel after supplementing (Google side affects) - most people will start with folic acid, which I did but started feeling worse, and I started to get concerned that I would have my symptoms forever! So, after reading many, many helpful and informative posts from this site, I realised I should get my MTHFR gene tested. Blood tests revealed I was positive for a mutation (compound heterozygous A and C) and now know why I can't use folic acid - or why even with my folate rich diet didn't help me. I've been on a folinic supplement (tried Methylfolate - made me crazy in four days of taking it) for the past week and the palpitations have all but gone - as well as that terrible shortness of breath!

Please also note - I saw a naturopath who helped me immensely and knew to delve deeper and test for copper, zinc, etc. which GPs mostly never test. You might find you're deficient/high in other things too. Worth checking.... Good luck x

fbirder profile image
fbirder in reply to designer8

Folinic acid is converted to methylenetetrahydrofolate which is then reduced to methyltetrahydrofolate - by the MTHFR enzyme. So any problems with MTHFR would affect folinic acid to the same extent as it would affect folic acid.

There is no evidence that being compound heterozygous for any combination of MTHFR mutations (and there are over 45 of them) has any noticeable effects, apart from a slight decrease in the stability of the enzyme for the C677T mutation.

clivealive profile image
clivealiveForum Support

Hi RiskiestEnd

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 re-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...

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

Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body.

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.

Thanks so much for all the info. Will try to get an appt and see what they say. In the meantime I’m going to order some from Germany to self inject.

I’m not sure if they’ve ever checked my folate and iron, so will ask when I eventually get an appointment if all three are in balance.

So fed up of feeling like this. It took them two years to give me the first round of injections, despite numerous letters from the hospital.

I totally agree with Clive’s advice about the folate. You really need to keep that at a good level to work with your B12. Google symptoms of folate deficiency (palpitations) and see if you relate.

Hi Clive, my doctor is now sending me for a folate test (and yet another B12 test). Having a B12 injection on Monday and on Monday they will book in the rest. Still remains to be seen how many they will give me.

Your info and info from everyone has been so helpful and certainly helped me get to this point. It’s ridiculous how much we have to battle. Pointing out the NICE guidelines certainly helped.

Hi,

Some B12 info that may be of use.

UK B12 documents

If you're in UK, I'd suggest reading all these documents.

BSH Cobalamin and Folate Guidelines

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

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

BMJ B12 article

bmj.com/content/349/bmj.g5226

BNF

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

NICE CKS

cks.nice.org.uk/anaemia-b12...

1) UK B12 treatment for b12 deficiency without neuro symptoms

6 B12 loading jabs over 2 weeks followed by a jab every 3 months

2) UK B12 treatment for b12 deficiency WITH neuro symptoms

A B12 loading jabs every other day for as long as symptoms continue to improve, followed by a jab every 2 months.

Do you have any neuro symptoms eg tingling, pins and needles, numbness, tinnitus, tremors, memory problems, balance issues plus others? If yes, my understanding is that in UK, you should be on second pattern of treatment.

Inadequate treatment may lead to further deterioration including potential spinal problems.

Neuro Consequences of B12 deficiency

PAS news item

pernicious-anaemia-society....

PAS article about SACD, sub acute combined degeneration of the spinal cord, available to PAS members only.

pernicious-anaemia-society.... See Page 2.

B12 Deficiency Symptoms

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/... (may need to be B12d.org member)

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

What does GP think is causing low B12?

Do you have a PA diagnosis? PA is an auto-immune disease. Having one auto-immune condition can increase possibility of developing another auto-immune condition. Has GP excluded possibility of other health conditions eg Coeliac disease, Thyroid problems?

Coeliac Disease

NICE guidelines suggest anyone with unexplained B12, folate or iron deficiency shoudl eb tested for Coeliac disease.

In UK, two first line tests are recommended.

1) tTG IgA

2) Total IgA

My experience is that Total IgA test is not always done but I think it's an important test as people with IgA deficiency will need different tests for Coelaic disease.

NICE guidelines Coeliac Disease (2015 version)

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

Coeliac blood tests

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

Thyroid disease

May be worth putting any thyroid results on Thyroid UK forum on HU. In UK, GPs often only test TSH which won't give a full picture of thyroid function.

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

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

H pylori infection?

patient.info/health/dyspeps...

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

CAB NHS Complaints

citizensadvice.org.uk/healt...

HDA patient care trust

UK charity that offers free second opinions on medical diagnoses and medical treatment.

hdapatientcaretrust.com/

B12 books I found useful

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

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book is up to date with UK b12 guidelines.

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies.

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

Very comprehensive with lots of case studies.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769717 answerphone

PAS support groups in UK

pernicious-anaemia-society....

B12 Deficiency Info website

b12deficiency.info/

UK B12 Blogs

May be stories that are relevant to you.

Martyn Hooper's blog about PA

martynhooper.com/

B12 Deficiency Info blog

b12deficiency.info/blog/

Link about "What to do next" if B12 deficiency suspected

b12deficiency.info/what-to-...

Blood tests

b12deficiency.info/b12-test...

Macrocytosis

patient.info/doctor/macrocy...

Full Blood Count and Blood Film

labtestsonline.org.uk/tests...

patient.info/doctor/periphe...

Folate Deficiency

patient.info/doctor/folate-...

I am not medically trained.

Thank you so much. Yes have neuro symptoms 😔. Also am Coeliac. I have put in an online request to the GP to start injections against and pointed out the NICE guidelines to them. I’m not sure it will do any good but can but try.

What sort of spinal issues. I had a bone density scan recently, and whilst my density is fine, there is a curve in my lower spine. And when they measured my height I’ve lost two centimetres in height 🙄.

Did the calculator thing. I have 9 body systems being affected.

"have put in an online request to the GP to start injections against and pointed out the NICE guidelines to them. I’m not sure it will do any good but can but try. "

Might be worth following up online request with a signed, dated, brief as possible, polite letter. My understanding is that in UK, letters to Gps are filed with medical notes so are arecord of issue sraised. I always keep copies of any letter I have written. I sometimes included extracts from UK b12 documents.

See letter writing link below. It has letter templates and lots of useful b12 info.

b12deficiency.info/b12-writ...

Point 1 in link is about Under Treatment of B12 deficiency with neuro symptoms.

In my opinion letters are less likely to be ignored than something said in an appointment.

"What sort of spinal issues."

Severe B12 deficiency can sometimes lead to sub acute combined degeneration of the spinal cord (SACD).

Neurological Consequences of B12 Deficiency

PAS news item, mentions SACD

pernicious-anaemia-society....

PAS article about SACD, available to PAS members only.

pernicious-anaemia-society.... See Page 2.

Blog post from Martyn Hooper's blog, mentions SACD

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

"Also am Coeliac"

Coeliac disease is an auto-immune disease, so is PA (Pernicious Anaemia).

Has GP tested for PA?

In UK, this would usually be an Intrinsic Factor Antibody test. See BSH Cobalamin and Folate Guidelines link in my post above for more info on IFA test and diagnosis of PA.

Flowchart link in my post above outlines when PA or Antibody Negative PA can be diagnosed in UK.

IFA test is not always reliable and it is still possible to have PA even if IFA result is negative or normal range.

If IFA test is done close to a b12 injection or B12 supplements it may give a false positive result.

labtestsonline.org/tests/in...

Help for GPs.

1) PAS website has section for health professionals, they can join PAS for free as associate members.

2) PAS article "An Update for Medical Professionals: Diagnosis and Treatment" , available to PAS members only.

pernicious-anaemia-society.... See Page 1.

Some forum members have passed this on to GPs.

3) I gave my GPs a copy of book "What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper.

Best advice I ever got was to always get copies of all test results.

Access to Medical Records (England)

nhs.uk/NHSEngland/thenhs/re...

nhs.uk/chq/pages/1309.aspx?...

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