Starting SI without PA or B12 def diagnosis. Anyone else done this?

[Beck71]

Has anyone gone straight to self injecting without PA or B12 deficiency diagnosis? I have 29 of the 32 symptoms on PAS list. GP has made neurologist referral but says they’ll be a waiting list. B12 results I suspect are false positive because of taking supplements. IF test being done tomorrow. I had half colon and half ileum removed 15 years ago. PA symptoms been progressive over 2-3 years. Neuropathic pain, brain fog and balance issues very bad for 4 months. Is there any benefit in waiting for neurologist before I start SI? I’m worried about permanent damage.

[Gambit62 Administrator]

The surgery seems likely to have affected your B12 absorption as B12 absorption happens in the terminal ileum. It can take a long time for compromised absorption to have lead to deficiency - years or even decades so the time delay certainly wouldn't rule out the surgery as the causal factor.Have your B12 levels been monitored at all in the 15 years since surgery? - dropping levels over time would be good confirmation that you have an absorption problem.

I haven't been in your position and I'm not a medic.

There is a lot in your history that would suggest B12 and standards do recognise the need for aggressive treatment and prompt treatment if there is neurological involvement.

Have you tried sharing the BCSH standards with GP and asked for a trial?

onlinelibrary.wiley.com/doi...

B12 isn't toxic

[Beck71 in reply to Gambit62]

Nobody’s ever mentioned or checked my B12 in 15 years since surgery. I fell across PA or B12 deficiency by accident Googling symptoms. I’m going to wait for my IFA test results and then give my GP the NHS guidance on treating symptoms. Thank you for you help

[fbirder]

There is no such thing as a 'false positive because of taking supplements'.

If your blood levels go up significantly by taking oral supplements then you can absorb oral B12.

[Beck71 in reply to fbirder]

Hiya,

Is there not a difference between active and inactive B12 in blood?

[fbirder in reply to Beck71]

B12 in the blood is bound to one of two proteins - haptocorrin (HC) or transcobalamin (TC). Only the TC-B12 can be brought into the cells. This is known as 'Active' B12 (or holotranscobalamin or holo-TC). Nobody is quite sure what the purpose is of HC-B12.

The normal serum test measures both Hc-B12 and TC-B12. The active test measures only TC-B12.

Normally there's about 4 times as much HC-B12 as there is TC-B12, which is why the 'normal' range for the two is different.

There doesn't seem to be much point in the 'active' B12 test. Although it seems to be a little more precise and accurate than the serum test, there is still the problem of a big overlap between 'people with 'normal' B12 who are actually deficient' and 'people who aren't deficient but have 'low' B12.

I've never heard of anybody with a normal serum test and a very low 'active' test. Some people have a genetic defect that results in problems making TC. But those people show symptoms as infants.

I only know of one person with a functional deficiency who has had a cause looked for. But there were no obvious genetic anomalies that could be found.

[Sleepybunny]

Hi,

I'm surprised you are not already receiving B12 from GP if you are symptomatic for B12 deficiency and your GP has ruled out other causes of your symptoms.

UK guidelines suggest that patients who are symptomatic for B12 deficiency with other causes ruled out should be treated.

Do you mind me asking what your current B12 level is?

Some links that may be of interest....

Some links may have details that could be upsetting.

I'm not medically trained.

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

b12deficiency.info/what-to-...

Symptoms of B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

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

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.

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Point 1 is about being under treated for B12 deficiency with neuro symptoms.

Point 5 is about being symptomatic for B12 deficiency with an in range serum b12 result.

Point 5 mentions Functional B12 deficiency, where there is plenty of B12 in the blood but it's not getting to where it's needed in the cells.

The link has letter templates on a variety of situations linked to B12 deficiency that people can base their own letters on.

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

Best to keep letters as brief, to the point and polite as possible. It's harder to ignore a letter in my opinion.

CAB NHS Complaints

citizensadvice.org.uk/healt...

Might be worth talking to your local MP if struggling to get treatment.

Retention of UK medical records

bma.org.uk/advice-and-suppo...

Don't rely on there being evidence of a past diagnosis of PA (Pernicious Anaemia) or other cause of B12 deficiency in current medical records.

If you get proof of diagnosis eg positive test result/letter from specialist confirming diagnosis etc keep a copy in a safe place.

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

Can be interesting to see what GPs have written about you in the past....

Accessing Health Records (England)

patients-association.org.uk...

bma.org.uk/media/1868/bma-a...

In UK, patients can register to access test results/health records online. Should be details on your GP surgery website if you're in UK.

UK B12 documents

BSH Cobalamin and Folate Guidelines

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

Summary of above document

pernicious-anaemia-society....

BMJ B12 article

bmj.com/content/349/bmj.g5226

Emphasises need to treat patients who are symptomatic even if their B12 level is within range.

BNF Cyanocobalamin

bnf.nice.org.uk/drug/cyanoc...

BNF Hydroxycobalamin

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

See section on "neurological involvement" in above link if you have neuro symptoms.

NICE CKS B12 and Folate Deficiency

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

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

Local Guidelines

Each CCG/Health Board/NHS Hospital Trust in UK will have its own local guidelines on treatment/diagnosis of B12

I suggest you track down the guidelines on treatment/diagnosis of B12 deficiency for your area of UK and compare them with BSH,NICE CKS and BNF links above .

Some areas of UK have guidelines that can be unhelpful. See blog post below.

b12deficiency.info/blog/202...

Have you considered joining PAS who can offer support and info on PA?

PAS (Pernicious Anaemia Society)

Based in Wales, UK. Has some members in other countries.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring and an online contact form.

PA tests

Intrinsic Factor Antibody (IFA) test

labtestsonline.org/tests/in...

Parietal Cell Antibody (PCA) test

labtestsonline.org/tests/pa...

PCA is not recommended as a diagnostic test for PA in UK.

It is still possible to have PA with a negative result in IFA or PCA test but sadly some doctors may be unaware that it is possible to have Antibody Negative Pernicious Anaemia.

About 50% of people with PA test negative on IFA test.

About 10% of people with PA test negative on PCA test.

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). BNF treatment in book is out of date. See BNF link in this reply.

"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.

"Vitamin B12 deficiency in Clinical Practice" (subtitle "Doctor, you gave me my life back!" by Dr Joseph Alexander "Chandy" Kayyalackakom and Hugo Minney PhD

Copies of above books may be available from local library services.

Vital to get adequate treatment or there is an increased risk of permanent neurological damage including problems with spinal cord.

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

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

pernicious-anaemia-society....

B12 article from Mayo Clinic in US

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

Table 1 in above article is about frequent misconceptions about B12 deficiency.

Testing B12 during treatment

In UK, national guidance suggests that testing B12 levels after treatment has started is irrelevant. See links below.

Testing B12 during treatment (PAS article)

pernicious-anaemia-society....

Testing B12 during treatment (English article from Dutch B12 website)

stichtingb12tekort.nl/engli...

Misconceptions about a B12 deficiency

stichtingb12tekort.nl/engli...

Referrals

Has your GP/doctor got a list of all of your symptoms especially any neuro symptoms? See links to symptoms lists up page.

If neuro symptoms present, has your doctor referred you to a neurologist?

Some UK forum members who cannot get treatment from NHS or whose level of NHS treatment is not enough to keep symptoms at bay, resort to self treatment using B12 ampoules sourced from Europe and some use private GPs and other sources.

I feel that self injection is an absolute last resort but some on here feel there is no other option.

There are posts on this forum from people who treat themselves.There may be legal and ethical issues involved.

I've written some very detailed replies with more B12 info eg more B12 articles, b12 websites etc

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

I hope you find the answers you need.

[Beck71 in reply to Sleepybunny]

Thank you for all this info. I am PAS member now. I intend to give GP the PA NHS guidance at next appointment after IFA test results next week. She was implying I need to wait for neurologist before getting injections but I guess I need to be more assertive. Difficult when your so ill though.

[Hedgeree]

Hi Beck71,

From my reading on this forum it is usually advised to have your initial B12 injection in a medical setting administered by a nurse in case of an adverse reaction.

Although it seems to be rare for this to occur, it is better to do it this way.

I'm not sure from your post if you've already had your loading doses?

Best wishes.

[Chucknz]

I'm doing exactly the same I,m 62 had PA for âagesâ have terrible memory which is only getting worse.Having a CT on head soon

Started weekly SI 2 weeks ago trying to get the boost that having b12 gives most people.

It,s something I have never experienced

[Beck71 in reply to Chucknz]

Are you injecting daily? I’m not sure if I need to know what my iron and folate levels are before starting to SI