Hi All I have coleliac's disease and had always believed that my low b12 was due to this. I was a little casual about getting my 3 monthly b12 shot as I've been super-busy setting up a new business for the last couple of years. My last blood test showed b12 of 112 and I'm now having 6 shots every other day as a loading dose. The nurse casually mentioned my lack of intrinsic factor and it turns out that I had been tested for intrinsic factor antibodies and found positive and given a diagnosis of pernicious anaemia without anyone actually telling me this. I am feeling really unhappy about that - no wonder I have been feeling so awful. I saw on another thread that there may be other supplements I should be taking - can anyone advise what else I may need? Should the doctor be prescribing these? Thanks so much for any advice you can give.
Just got diagnosis, what else should ... - Pernicious Anaemi...
Just got diagnosis, what else should I be taking
For the first month and a bit your potassium levels may drop as your body starts making new red blood cells.
You will also find it difficult to absorb other vitamins and minerals. The PA will affect absorption of Vitamin D, folate and iron. You should take pills for the Vitamin D and folate (400 mcg a day of folic acid) and ask your doctor to check your levels or iron and other things as too much of things like iron can be as bad as too little. So ask for a blood test first rather than taking everything under the sun.
Thanks for your reply, much appreciated. Just had a phone conversation with doc and looks like Vitamin D level is really good (91) and folate also good at 9.3 - so somehow managing to absorb these despite the PA and Coeliacs. Didn't ask about potassium - do people supplement while having the loading dose?
Hi,
"turns out that I had been tested for intrinsic factor antibodies and found positive and given a diagnosis of pernicious anaemia without anyone actually telling me this. I am feeling really unhappy about that"
Sad to say that you are not the first person on this forum to have been diagnosed with PA by doctors but not told.
May be worth accessing medical records/test results.
Access to Medical Records (England)
nhs.uk/NHSEngland/thenhs/re...
england.nhs.uk/contact-us/h...
Most UK GP surgeries have online access to a summary of results/records. See your GP surgery website for details; look for Patient Access/Online Access/Emis Access.
Best advice I ever got was to always get copies of all test results. Learnt to do this after being told everything normal/no action and then finding abnormal and borderline results on copies.
Unhappy with Treatment (UK info)?
Letters to GPs about B12 deficiency
b12deficiency.info/b12-writ...
Point 1 is about under treatment of B12 deficiency with neuro symptoms.
CAB NHS Complaints
citizensadvice.org.uk/healt...
HDA patient care trust
UK charity that offers free second opinions on medical diagnoses and medical treatment.
Have you considered joining and talking to PAS (Pernicious Anaemia Society)?
PAS (Pernicious Anaemia Society)
Based in Wales, UK.
pernicious-anaemia-society....
PAS tel no 01656 769717 answerphone
PAS support groups in UK
pernicious-anaemia-society....
There are currently 13 support groups in UK.
Blog post about how PAS can support PAS members seeking PA diagnosis
martynhooper.com/2017/06/24...
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.
Coeliac Disease
NICE guidelines Coeliac Disease (UK document)
nice.org.uk/guidance/ng20/c...
Coeliac Blood Tests
coeliac.org.uk/coeliac-dise...
Coeliac support groups UK
Other B12 websites
B12 Deficiency Info website
B12 Awareness (US website)
B12d.org holds support meetings near Durham, UK
Stichting B12 Tekort (Dutch website with English articles)
stichtingb12tekort.nl/weten...
UK B12 Blogs
Martyn Hooper's blog about PA
B12 Deficiency 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-...
Iron Studies
labtestsonline.org.uk/tests...
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
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...
Neurological Symptoms
Vital to get adequate treatment. Untreated or under treated B12 deficiency can lead to permanent neurological damage including spinal problems.
Do you have any neurological symptoms eg tingling, pins and needles, insect crawling sensations, migraine, restless legs syndrome, memory problems, balance problems, word finding problems, clumsiness, dropping things, tinnitus, brainfog, confusion plus others?
If yes to neuro symptoms
1) Have you been referred to a neurologist?
2) Has your GP sought advice from a haematologist. See NICE CKS link up page.
3) Is your GP aware that BNF British National Formulary recommends following pattern of treatment for B12 deficiency where neuro symptoms are present? Sadly many UK members of the forum with neurological problems struggle to get this pattern of treatment.
A B12 loading jab every other day for as long as symptoms continue to get better then a jab every 2 months
For patients without neuro symptoms, recommended treatment is...
6 B12 loading jabs over 2 weeks followed by a jab every 2 or 3 months
Your GP may not be aware that patients without any neuro symptoms can still have jabs every 2 months after loading. This change is recent and some GPs may be using an copy of BNF book that has not been updated.
"was a little casual about getting my 3 monthly b12 shot ....last blood test showed b12 of 112 ...now having 6 shots every other day as a loading dose."
I suspect you have been put on the treatment pattern for those without any neurological symptoms. Has GP got a list of any neuro symptoms you have?
GP can find treatment pattern for those with neuro symptoms in BNF book Chapter 9 Section 1.2
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....
Blog post from Martyn Hooper's blog, mentions SACD
martynhooper.com/2010/09/21...
If you see a neurologist, worth asking them to check your proprioception sense ( awareness of body in space), Problems with proprioception can be associated with B12 deficiency.
two tests that check proprioception are
1) romberg test
2) walking heel to toe with eyes closed
Vital that these tests are only carried out by a doctor at medical premises due to risk of loss of balance, videos of these and other propriocetion tests on Youtube.
If no neuro tests are done with patient's eyes closed, it's possible that proprioception sense has not been fully tested.
Help for GPs
1) PAS website has section for health professionals. It is free for them to join PAS as associate members. Might be worth drawing GPs attention to this as lots of helpful info for them.
2) PAS website has section with useful leaflets eg
" An Update for Medical Professionals: Diagnosis and Treatment "
"Treatment is for life"
pernicious-anaemia-society....
Access to PAS members only. Some on forum have passed leaflets onto GPs.
3) If you join PAS, you may be able to arrange for your GP to speak to PAS chair, Martyn Hooper. Would need to discuss with PAS first.
Symptoms of B12 Deficiency
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...
Some other causes of b12 deficiency besides PA
H Pylori infection
patient.info/digestive-heal...
Exposure to Nitrous Oxide
gov.uk/drug-safety-update/n...
Internal parasites eg fish tapeworm
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...
I am not medically trained. More B12 info in pinned posts on this forum.
Thanks for your comprehensive reply, lots of resources to look into. I have finished the 6 injection loading dose and I am feeling worse now than I ever have in my life before and am so pale I look like I'm dead. The GP has said the laboratory will not allow them to repeat blood tests now for 3 months (sounds like total nonsense to me, the lab tells the GP what to do?) Is there anything else I could / should do? I am wondering when I am going to feel better and 3 months seems like an awfully long time to struggle on like this. In all honestly I haven't had obvious neural symptoms except perhaps a bit of struggling to find the right word (I'm a teacher so this is obvious when it occurs).
Hi,
"I haven't had obvious neural symptoms except perhaps a bit of struggling to find the right word"
Have you mentioned this symptom to GP? Worth giving them a list of all your symptoms.
Nominal aphasia (word finding problem) is usually considered a neurological symptom.
I suggest checking these symptoms lists below to see if you recognise any neuro symptoms that you have. It's vital GP knows about any as it could affect the level of treatment you receive. See BNF link in other post.
Some more I can think of are
bumping into things
numbness
muscle twitches
vertigo
Do you feel wobbly when it's dark or your eyes are closed or you lose sight of your surroundings?If yes, proprioception could be affected.
I used to fall off the pavement if someone walked directly towards me.
Do you ever do daft things eg put keys in the fridge, boil the kettle without any water in it?
I found my ability to do mental arithmetic was affected.
Symptoms of B12 Deficiency
pernicious-anaemia-society....
b12deficiency.info/signs-an...
b12d.org/admin/healthcheck/...
"am so pale I look like I'm dead"
Have you had your iron levels checked?
Do you have results for Full Blood Count tests? There can be useful clues on this.
"I'm a teacher"
Might be worth joining a union if not already a member as employers don't always understand how B12 deficiency including PA affects people and may not be
as understanding as they could be.
Good luck
Thanks very much Sleepybunny, really appreciate the advice.
"I am feeling worse now than I ever have"
Forgot to ask before if your GP had checked your potassium levels? Some people can experience a drop in potassium levels (Hypokalaemia) at start of treatment.
See BNF link in my other post.
If you suspect this might be an issue it's important to discuss it with your GP.
PAS membership
pernicious-anaemia-society....
If there is an issue with employers then PAS membership gives access to PAS advocacy services.
UK recommended treatment for B12 deficiency without neuro symptoms is
6 b12 loading jabs followed by a jab every 2 or 3 months
UK 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
Both patterns of treatment allow for a maintenance jab to be given every 2 months whether neuro symptoms are present or not but GP may not know this.
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