I have changed doctors and he has changed my frequency of injections I have to be between 192-683 but get symptoms back in 383 help

[Angie47]

does anyone else have this problem

[Gambit62 Administrator]

are you based in the UK?

it is unfortunately not an unusual situation, and this is true in the UK despite the fact that current guidelines say that monitoring levels isn't necessary though they do stop short of being clear that serum B12 levels don't tell the whole picture so they can't be used to monitor post loading shots

[Angie47 in reply to Gambit62]

Yes am based in the UK and my previous doctors would give me a injection every two months but I moved areas and my new doctor is fixated on the belief of the levels of B12 between 192 and 683 my problem is that under 500 and my symptoms start coming back

[Gambit62 Administrator in reply to Angie47]

sorry to hear that GP is so (mistakenly) fixated - I need my levels permanently over 2000 to function so ended up treating myself as I couldn't get through. B12 is a lot more complicated than many medical professionals realise.

In addition to the materials highlighted by Sleepybunny below you could also try pointing your GP at the area of the PAS website specifically geared to medical professionals

pernicious-anaemia-society....

the next step is probably to write to your GP pointing out that current guidelines do not recommend treatment on the basis of serum B12 levels as, whilst these are useful for identifying an absorption problem (through falling levels) they are not a good guide to treatment as having a B12 injections introduces a new factor - the chances of a functional deficiency as a result of raised serum B12 levels.

If you join and contact the PAS they may also be able to advise more precisely on content.

[Sleepybunny]

Hi Angie47,

I am not medically trained.

It would be helpful to know what country you are in as treatment patterns for B12 deficiency vary from country to country.

What was the original frequency of your B12 injections?

What has the frequency been changed to?

Do you have neuro symptoms eg tingling, tinnitus, tremors, pins and needles, memory problems, balance issues plus other neuro symptoms?

pernicious-anaemia-society....

b12deficiency.info/signs-an...

In UK, people with B12 deficiency with neuro symptoms are supposed to get more frequent injections than those without neuro symptoms.

If you're in UK, I'd suggest reading following 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...

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.

PA (Pernicious Anaemia)

Do you have a diagnosis of PA? If yes, may be worth joining and talking to PAS. PA requires lifelong treatment.

PAS (Pernicious Anaemia Society)

Based in Wales, UK but has members from around the world.

pernicious-anaemia-society....

PAS tel no [phone] answerphone

B12 Deficiency Info website (some info may be UK specific)

b12deficiency.info/

Return of Symptoms

Symptoms coming back before next B12 jab is something many forum members experience. Link below mentions this.

pernicious-anaemia-society....

Some people resort to self treatment.

More B12 info in pinned posts on this forum.

[Angie47 in reply to Sleepybunny]

Thanks for all that info am based in the uk and yes my symptoms are coming back before my next injection and my new doctor is if fixated that my levels should be 192 and 683 as that apparently is the b12 levels of 1000 people, at the moment my level is 383 and although I tell the doctor I'm feeling them as far as he is concerned my level isn't low enough to warrant another injection

[toph]

Get your b12 ACTIVE level checked first at https: //nutris.viapath.co.uk an NHS LABORATORY 0costs £40?. ?best £40 quid you will ever spend

[Sleepybunny]

Just to add that having an Active B12 test while having B12 injections, means results of Active b12 test are likely to be affected.

active-b12.com/frequently-a...

I'm not sure that people who already have a diagnosis of b12 deficiency or PA would benefit from having an Active B12 test although I feel that it can be useful for people who are not supplementing B12 and are seeking a diagnosis.

"my new doctor is if fixated that my levels should be (between?) 192 and 683"

I think PAS would be interested hearing about this. Contact details in above post.

If B12 ref range for your area is 192 to 683 ng/L then a result of 383ng is not very high if you have been on regular B12 injections. Some people on here have blood results above 1000ng or even 2000ng.

If you join PAS there are several PAS support groups in UK.

pernicious-anaemia-society....

I hope GP has excluded possibility of further problems which might affect B12 levels. See links about risk factors.

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

PA is an auto-immune disease. Sometimes having an auto-immune condition increases the chances of developing another one.

Have you ever had tests for Coeliac Disease?

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) recommends that anyone with unexplained B12 deficiency, folate deficiency or iron deficiency should be tested for Coeliac disease.

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

Coeliac Blood tests

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

Thyroid Disease

Quite a few on here have thyroid problems. May be worth putting any thyroid results on Thyroid UK forum on HU. In UK, often only TSH is tested which won't give a full picture of thyroid function.

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

Have you had recent tests for folate and ferritin? I've read that it is helpful to have good levels of iron and folate when on B12 treatment.

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-...

UK B12 treatment (See BNF link and BSH Cobalamin Guidelines link)

For those with B12 deficiency without neuro symptoms...

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

For those with b12 deficiency with Neuro symptoms

A B12 loading jab every other day for as long as symptoms continue to get better then a jab every 2 months.

My understanding is if you have neuro symptoms you should be on the neurological treatment regime. GP can find info on this in

1) copy of BNF British National formulary Chapter 9 Section 1.2 (probably on their desk)

Also possible to get own copy.

2) copy of BSH Cobalamin and Folate Guidelines. I gave my GPs a copy.

Neuro Consequences

Some forum members with neuro symptoms, who were not getting the recommended treatment pattern, have passed on info in discussion or in a letter to GP about potential neuro consequences of under treatment.

PAS news item about Neuro Consequences of PA

pernicious-anaemia-society....

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

pernicious-anaemia-society....

Blog post from Martyn Hooper's blog, mentions SACD

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

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

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

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/

I gave my GPs a copy of Martyn Hooper's book "What You Need to Know About Pernicious Anaemia and B12 Deficiency"

I am not medically trained.

[RaJender9666]

what are your symptoms?

[Angie47 in reply to RaJender9666]

when I get low on B12 I get a lot more sensitive to pain and the tingling and burning sensations I get in my head and back get worse I already take folic acid and vitamin D

[RaJender9666]

Hope you get well soon..