New to asking for help: Hi, I was... - Pernicious Anaemi...

Pernicious Anaemia Society

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MissKota profile image

Hi, I was diagnosed with B12 deficiency in May. Not told anything about it except my number was quite low (128)

I was given the six loading dose and then on to three monthly injections.

I also have peripheral neuropathy which may or may not be connected for which I’m taking gabapentin. My GP hasn’t said anything about getting this checked out.

I’m really confused about the whole thing.

How do I know if my numbers are going up?

I get really exhausted by around week 8/9 and some days can barely make it out of bed. Is this normal?

Should I be seeing someone about the neuropathy? It hasn’t improved with the injections.

Thanks.

27 Replies

Have you been tested for the instrinic factor to see if you have a problem with absorbing b12?

You also should have all other vitamins tested aswell as thyroid, do you know if this result was total b12 or active? What neuro symptoms do you have? Also you usually feel worse before better after injections and can take along time for recovery, theres alot of people on here that can give you more advice

MissKota profile image
MissKota in reply to sbadd

Hi, thanks for replying.

No, I haven’t had any other checks. It was pure chance that I was tested for B12. I have been complaining about excessive tiredness and PN for two years but they kept putting it down to my diabetes.

In May I went to the GP with gastric problem and again mentioned the exhaustion and PN. She suggested blood tests (but didn’t say what for) and referred me for a colonoscopy which came back clear as did the bloods which I later found out were to check for coeliac and anaemia. Two weeks later I got a phone call from the receptionist to say the final blood result was back and the Dr wanted me to have B12 loading dose. And so it has gone from there.

Today I managed to book to get my next injection two weeks early. 👏🏻👏🏻👏🏻👏🏻👏🏻

joseph01 profile image
joseph01 in reply to MissKota

Wow ... what a fluke. It will be worth keeping a strict eye on your bloods now: from now on you are in charge of your own health!!!!

PLEASE have your INTRINSIC FACTOR checked..that one test could explain everything..if you've ever been or ARE on stomach meds, the meds will deplete your intrinsic factor...

Thank you, I’m trying to get a list of questions together for my GP so this will help.

If you have problems with doctors, like I did(they are CLUELESS about it) don't be fooled...I have a friend who sells methocobalamin B12 powder thru oxford labs..all you have to do, is add saline to it, self-inject, keep it covered in foil and in the dark...B12 is water soluble..it will NOT hurt you, even in high doses...doctors know nothing about it..it is now illegal to sell in injectable form..but the powder is exactly the same..just reconstitute it with any vial of saline...IF it makes you feel better, DO IT..we all know our own bodies better than the doctors..

Absolute exhaustion is a common symptom of b12d - I would go to bed, get up and go back to bed throughout the day. My exhaustion was intermittent and tended to end soon after treatment began.

MissKota profile image
MissKota in reply to Alfabeta

Hi, thanks for replying. I have several weeks after the injection when I’m okay and have reasonable energy but it goes downhill from there.

Sounds like you could do with trialling more regular injections??

Go back to Gp with list of symptoms.

Definitely get referred to a specialist? Neurologist if symptoms persist.

In my experience theye rule out other nasty things but don't seem to know Much about the b12 defiency .

That is only my opinion. You have to push .

I hope you gain a better quality of life soon.

MissKota profile image
MissKota in reply to Nackapan

Hi, thanks for replying.

I managed to book an earlier dose (only by two weeks but it’s a start)

I’ll definitely take your advice about taking a list of symptoms and questions to the GP. Thank you.

Hi,

1) UK recommended treatment pattern for B12 deficiency without neuro symptoms is ...

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

2) UK recommended treatment pattern for B12 deficiency WITH neuro symptoms is ...

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

You appear to have been put on the first pattern when my understanding (I'm not medically trained) is that you should be on second pattern as you have neurological symptoms.

Mild dietary B12 deficiency is sometimes treated with low dose oral b12 tablets. More severe dietary deficiency with neuro symptoms should be treated with B12 jabs.

Vital to get adequate treatment as there is a risk of permanent neurological damage including spinal problems if under treated.

Do you have any other neurological symptoms eg

tingling, numbness, pins and needles, burning sensations, insect crawling sensation, tinnitus, muscle twitches, muscle fasciculations, flickering eyelids, restless legs syndrome RLS, vertigo, clumsiness, dropping things, bumping into things, strange gait (unusual way of walking), word finding problems, balance issues, brainfog, proprioception problems (problems with awareness of body in space) etc?

Does your GP have a list of all your symptoms, especially any neurological ones?

Symptoms of B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

In relation to B12 deficiency, GPs often look for signs of peripheral neuropathy PN especially signs of sensory neuropathy so worth mentioning signs of PN.

Link about PN

nhs.uk/conditions/periphera...

Link about writing letter to GP if under treated for B12 deficiency with neuro symptoms

b12deficiency.info/b12-writ...

I feel it is more effective to put queries about treatment in a brief as possible, polite letter to GP. Letters to GPs in UK are ,as far as I know , supposed to be filed with medical notes so harder for GP to ignore them.

Letters could contain symptoms list, test results, relevant personal and family medical history, extracts from UK B12 documents, any other supportive evidence.

Worth mentioning that GP can find treatment info in their BNF book Chapter 9 Section 1.2

although possible that some GPs may be using an out of date BNF book.

You could draw your GPs attention to consequences of under treatment.

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

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

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

Blog post from Martyn Hooper's blog, mentions SACD

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

Referrals

With neuro symptoms present, have you been referred to

1) a neurologist?

If you see a neurologist, ask them to check your proprioception sense. Two tests that help to do this are Romberg test and walking heel to toe with eyes closed. Problems with proprioception are associated with B12 deficiency. Vital that these tests are only done by a doctor due to risk of loss of balance. If no tests are done with patient's eyes closed then unlikely that proprioception has been fully tested.

2) a haematologist?

NICE CKS link recommends that GPs seek advice from a haematologist for patients with b12 deficiency with neuro symptoms. If GP won't refer you, they could at least contact a local haematologist by letter and ask for advice.

Don't expect better treatment from a specialist, ignorance about B12 deficiency exists among specialists as well as GPs. I just hope you are lucky and get one who knows about B12.

If gut symptoms present, have you been referred to a gastro enterologist?

Gastro specialist should be able to spot signs of gut damage from PA, Coeliac, H Pylori etc.

PA (Pernicious Anaemia)

Do you have a PA diagnosis or do you suspect you have PA?

If yes then worth joining and talking to PAS (Pernicious Anaemia Society).

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a telephone helpline for members to ring.

PAS support groups in UK

There are currently 15 support groups in UK so may be one close to you.

pernicious-anaemia-society....

Blog post about how PAS can support PAS members seeking PA diagnosis

martynhooper.com/2017/06/24...

Has your GP tested you for PA?

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.

Both these tests can be unreliable.

It is still possible to have PA with a negative result in IFA or PCA test.

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

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

If there is PA or other auto immune conditions in the family, does your GP know?

Symptoms of B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

As well as being tested for PA, have you been tested for

Coeliac disease?

UK guidelines below recommend that anyone with unexplained B12, folate or iron deficiency should be tested for Coeliac, so should anyone who has a first degree relative with Coeliac.

If you were tested in past...

1) Did GP order both recommended tests tTG IgA and Total IgA?

2) Did GP tell you to eat plenty of gluten in more than one meal per day for several weeks before blood taken?

A person with Coeliac disease can have negative results on tTG IgA test if

1) They have IgA deficiency. Total IgA test checks for IgA deficiency.

2) They were not eating enough gluten prior to tests.

People with IgA deficiency will need alternative tests for Coeliac.

NICE guidelines Coeliac Disease (2015 version)

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

Coeliac Blood Tests

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

Tested for H Pylori infection?

patient.info/digestive-heal...

Any exposure to Nitrous Oxide?

gov.uk/drug-safety-update/n...

Nitrous oxide is in gas and air mix, used in pain relief for labour and sometimes as part of anaesthesia for operations. Nitrous oxide inactivates B12 in the body.

Any chance of internal parasites eg fish tapeworm? Do you ever eat raw fish eg sushi or smoked salmon?

One potential sign of fish tapeworm infection is an increase in eosinophils, a type of white blood cell WBC. Eosinophil result can be found on results for Full Blood Count FBC.

If you need to know more then search online for " B12 deficiency parasites"

"for which I’m taking gabapentin"

Some drugs and medications can interfere with B12 levels (and folate levels). Please discuss this with GP if you have any concerns.

If in UK, I suggest you read all the following documents

UK B12 documents

BSH Cobalamin and Folate Guidelines

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

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

Flowchart outlines process for diagnosing PA and Antibody Negative PA in UK

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

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

BNF guidance on treating b12 deficiency changed recently.

pernicious-anaemia-society....

BNF Children

bnfc.nice.org.uk/drug/hydro...

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 does not show updated BNF info.

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

Has several case studies. I cried when I read this as it was as if I was reading about myself.

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

Very comprehensive with lots of case studies. There is also a paediatric version of this book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".

I also plan to read

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

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-...

Iron Studies

labtestsonline.org.uk/tests...

B12 Deficiency Info website

b12deficiency.info/

B12 Awareness (US website)

b12awareness.org/

B12d.org holds support meetings near Durham, UK

b12d.org/event

Stichting B12 Tekort (Dutch website with English articles)

stichtingb12tekort.nl/weten...

UK B12 Blogs

There may be stories on these blogs that are relevant to you.

Martyn Hooper's blog about PA

martynhooper.com/

B12 Deficiency Info blog

b12deficiency.info/blog/

Warnings

1) B12 deficiency is not always well understood by GPs and specialists so it pays to be well prepared for any appointments.

2) Some GPs are not able to cope well with assertive patients so be prepared for GP/patient relationship becoming strained and have a back up plan eg another GP surgery to go to.

nhs.uk/common-health-questi...

3) Best piece of advice I ever got was to always get copies of all my blood test results.

I am aware of forum members who have been told everything is normal/no action on blood tests when there are actually abnormal and borderline results. It happened to me.

Access to Medical Records (England)

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

4) Local Guidelines

Some parts of UK are using out of date local guidelines on treating B12 deficiency. Worth tracking down your local area guidelines and comparing them with national guidelines eg BNF, BSH and NICE CKS links.

Support

Do you have someone who can go with you to any appointments that might be challenging eg supportive friend or family member? Even better if they have read about B12 deficiency and understand what you are going through.

PAS support groups can offer emotional support and are a great way to find out useful info eg helpful GPs.

My impression is that GPs and specialists are likely to be kinder if a witness is present.

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/

Local MP

If you're still struggling to get recommended level of treatment in a few weeks then may be worth talking to MP although at moment in UK they are busy with election.

Help for GPs

PAS website has section for health professionals that your GP may find useful

pernicious-anaemia-society....

PAS website has section with useful leaflets that some forum members pass on to their GPs eg

"An Update for Medical Professionals: Diagnosis and Treatment"

pernicious-anaemia-society....

You would need to be a PAS member to print these out.

I am not medically trained.

Good luck.

Wow, thanks for such an in-depth comprehensive reply.

I hopefully won’t have to go down the MP route as my GPs are pretty good. I think the main issue is that I have other health conditions which are blurring the view.

The exhaustion was the first symptom I had but I have heart failure so it was put down to that.

Then came the PN which began with the tingling and pains, first in my feet and then in my hands. The pain and burning feelings were unbearable so I was prescribed gabapentin. This was attributed to my diabetes despite the podiatrist disagreeing. I do have other symptoms including restless legs which is a nightmare especially when twinned with muscle spasms

More recently (the last week or so) I’ve been experiencing dizziness and light headedness to the point where I’m a bit unsteady when walking, bumping into things. At the moment my cognition is good although I sometimes (several times a day) struggle to find words that I’ve been using all my life.

I hadn’t realised that these things could be linked to B12 so, as Nakapan also suggested, I need to write a list to take to my GP and ask for referrals.

Sleepybunny profile image
Sleepybunny in reply to MissKota

"as my GPs are pretty good"

I'm pleased to read you have a good GP but I do think they should have known that the recommended treatment for B12 deficiency with neuro symptoms is

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

This is more intensive than you are currently receiving. I hope your GP is aware that under treatment can lead to permanent damage including spinal damage (SACD).

All UK GPs have access to BNF info in a BNF book and online BNF so to my mind no excuse for not knowing what it says in BNF Chapter 9 Section 1.2

It could be as simple as the GP not reading the whole BNF entry as the bit about treatment for those with neuro symptoms is further down the page.

Maybe your GP is being constrained from treating according to national guidelines because they are in an area of UK that has out of date local guidelines.

I suggest tracking down a copy of the local NHS guidelines on B12 deficiency treatment. Search online for " Name of local area NHS B12 Deficiency Guidelines"

If you can't find them then you could...

Look on local NHS website under haematology policies.

You could submit a FOI Freedom of Information request to local NHS website.

Ask practice manager for a copy of local policy being used in the area (this might irritate them though).

Ask MP to help.

Join nearest PAS support group and ask them if anyone knows what policy is in your area.

(You would need to join PAS to access contact details for support groups)

GPs may also be reluctant to give jabs more often because

1) Budget Constraints

If you suspect this the reason you could ask to be taught to self inject. Nurses' time is expensive but B12 jabs are not.

2) GP is under the impression that giving high doses of B12 may lead to toxicity.

Show them this article ...

Treatment with high dose vitamin B12 been shown to be safe for more than 50 years

stichtingb12tekort.nl/weten...

Misconceptions about a B12 deficiency

stichtingb12tekort.nl/weten...

In a nutshell try to think of all the reasons why GP has not given you jabs more often and have the evidence to hand to refute what they say if necessary.

I think at very least the GP should explain to you why you are only having jabs every 3 months.

If you join PAS, have a copy of their leaflet " "An Update for Medical Professionals: Diagnosis and Treatment" " in your bag at next appointment.

If your GP is unhelpful at next appointment, I suggest you consider writing a letter. See letter writing link in my other post.

Have you looked to see if there are any links between heart problems and B12 deficiency?

I am not medically trained.

Hi I have just found out I have b12 deficiency and had my first loading injection yesterday but I found I have been getting acid reflux for the last 2 weeks can this be because of the deficiency?

Hi,

See links to lists of symptoms in my first reply on this thread.

Might be best for you to start a thread of your own on the forum as that way you'll get more responses. Click on blue tab with pencil at top right of screen.

As suggested it is so important to always obtain copies of all your test results with ranges so you can monitor your progress and check what has been missed ! You are legally entitled to these. When your GP says Fine/Normal/OK they mean in range - but it is where you are in the range that is the key to wellness.

Diabetes can be linked to low thyroid too so hope you have been correctly tested 🤔

I have Hashimotos and PN and a B12 issue due to extensive gut surgery for TB and Crohns.

MissKota profile image
MissKota in reply to Marz

Thanks for your reply. I’ve always asked for copies of letters sent to my GP and they usually send me a print out of my diabetes annual bloods etc but I’ve never thought to ask for the others to be written down.

I will ask my diabetic nurse when I see her on Tuesday.

Marz profile image
Marz in reply to MissKota

You can request at Reception for printed copies. Sometimes mistakes can be made when writing down results. Good Luck !

fbirder profile image
fbirder in reply to MissKota

Also, try to get electronic access. Much easier and more reliable. nhs.uk/using-the-nhs/nhs-se...

MissKota profile image
MissKota in reply to fbirder

Thanks. I didn’t know there was such a link. I’ve signed up and on Monday I’ll phone the surgery and ask for access to my test results.

Marz profile image
Marz in reply to MissKota

From reading many posts it seems not all surgeries have on-line access. Also you may need enhanced access to view results. Surgeries do vary ...

MissKota profile image
MissKota in reply to Marz

I’ve managed to get access to medication/allergies and appointments so I will have to ask about test results. I might not get it but ‘shy bairns get nowt’

MissKota profile image
MissKota in reply to MissKota

UPDATE

I now have access to my patient record (with GP comments omitted of course) and my test results. not that I understand what half of them mean but it makes it easier when asking for advice 😊

Sleepybunny profile image
Sleepybunny in reply to MissKota

Hi,

I'm assuming you mean you have digital access.

You are, as far as I know, entitled to ask for access to written records.

This may require a formal written request to practice manager.

MissKota profile image
MissKota in reply to Sleepybunny

Yes, I have access to all my GP record digitally with exception of the Dr’s actual notes and tbh I don’t actually need those. The diagnosis, treatments and referrals are all there, as are GP requested test results.

I need one injection every 20 days (hydroxycobalamin).Many patients need more injections when they start their therapy.Some go on for a year or more ,with injections on alternative days.

Don't check your b12.The status of Homocystein shows whether your b12 is enough or not .Check it!

Thank you for responding. What is homocysteine and how do you check it? Can you do it yourself?

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