I am new to this website and do not know if I have PA? Went to see Gp in June 2019 as feeling worn out,dizzy spells and generally feeling unwell. (taking into account I have a failed spinal fusion back syndrome and Fibromyalgia). First time I had B12 checked and it showed 79 - told I would need 6 injections over 2 weeks and had to wait a month for this. My Gp cannot diagnose as to why this is low and my intristic factor was normal. After the initial injections in July, I queried this with another GP and asked if I need the injections once every three months in the future or to take tablets,told that as I've had the above 6 injections I am no longer B12 deficient, asked should I take tablets or go on a B12 diet, told to diet. Taking into account I eat meat and fish anyway and am slim and not overweight. Went back to see the first GP and told to continue to diet as I am currently not deficient and to have a B12 re-test in a years time. Told them not to bother. Will this correct itself, or will I just get worse over time. The initial injections did not help me at all. I do not get any help with my back problem or fibromyalgia either.
B12 deficiency not treated: I am new to... - Pernicious Anaemi...
B12 deficiency not treated
Go back to the doctor and demand you get proper treatment.
Your B12 was very low. It would not go that low without a very good reason. If you're not vegan then it is almost certainly because you have PA. The test they did for IF antibodies is worse than useless.
If you do not get proper treatment then you stand a good chance of suffering nerve damage, which may be permanent.
Print this out - onlinelibrary.wiley.com/doi... - and read through it thoroughly.
Print out another copy and highlight the bit on page 501 that says
Patients negative for IFAB, with no other causes of
deficiency, may still have pernicious anaemia and should be treated as anti-IFAB-negative pernicious anaemia. Lifelong therapy should be continued in the presence of an objective clinical response
Write a letter to the doctor with that included. Ask why you were deficient and why you are not being given the recommended treatment.
Unfortunately, many doctors are very poorly informed about PA/B12d. There are many here who will be able to offer you a great deal of information. Sleepybunny posts a lot of links so you may want to look up their replies: healthunlocked.com/user/sle...
Here are some past posts with some very useful links:
healthunlocked.com/pasoc/po...
healthunlocked.com/pasoc/po...
Based on everything that I have read, the test for intrinsic factor antibodies is quite unreliable, presenting with a lot of false negatives. A positive diagnosis is quite reliable but a negative one, not so much.
If you have PA (or any other form of B12d due to poor absorption), then injections will need to be for life and on a regular basis based on your personal requirements. Quite honestly, some will feel a difference with just a few injections, others may need many, everyone is quite different. If you have neurological damage/symptoms, then the NICE guidelines state every other day injections until symptoms stop improving. I was diagnosed with fibromyalgia 20 years ago, PA just a few months ago. I have a lot of neurological damage as the PA went undiagnosed/unaddressed for nearly 20 years and am hoping that if B12d/PA is among the contributing factor to your health concerns that you pinpoint it soon. It took me dozens of injections before I felt even a slight difference in my symptoms. You are wise in seeking your own answers to your health problems, not just relying on a brief assessment from your GPs who are probably under qualified in properly diagnosing this malady. (I am not a medical professional, just a PA patient who had do their own investigation and was fortunate enough to find the PAS and this forum otherwise I would not have the answers that so many of us require.)
Hoping that others will provide more info for you and wishing you the best in getting the proper diagnosis and treatment. Please don't be bullied into giving up on your quest for proper treatment!
thank you for your reply. As you are aware after you have had Fibromyalgia for twenty years, Doctors do not know anything about this either. I had a spinal fusion operation 6 years ago, which they said worked but failed as I am worse than before. I am sure this condition caused the Fibromyalgia, which was diagnosed two years ago and now low B12. I am sure they are all related, but Gp's will not confirm this and have said my ongoing symptoms are due to my Fibromyalgia. (isn't it funny how Gp's latch on to this and then everything you see them about is blamed on Fibro). Thanks for your advice
I hear you, once you get the "fibro" label, you are kind of stuck for life!
Hi,
I've written a very detailed reply on this thread on the forum which may have useful info for you.
I must learn to stop ranting about how uneducated some "Professionals" are about B12D & PA, but every time I read similar stories, where people like this are left to suffer, along with many others, I just want to grab these so called professionals & shake them! 😠😠
Your B12 level was very low as fbirder says. The usual reason (and there has to be one) for a very low result is PA.
Intrinsic factor antibody test is 40 - 60% accurate, giving false negatives. So unless they are prepared to continue in case you get a positive (95% accurate) there is no point hoping for first-time accuracy if your GP is unaware how unreliable this test really is and so a result can be used erroneously to "prove" that you do not have PA . Martyn Hooper (founder of the Pernicious Anaemia Society) had success on 3rd attempt !
Perhaps you could persuade GP to test MMA level - this, if high, would give a second reason to suspect PA as the cause. Or ask why s/he thinks B12 got as low as that. If you eat meat and fish, where did all that extrinsic factor go to ?
Find one good GP at the practice that you can trust and stick to that one.
My GP will not do any further tests. I have also seen 3 different doctors and each one has said that as I have now had the initial 6 B12 injections over two weeks I am no longer B12 deficient. They did suggest me continuing a diet with B12 and having a further B12 test in a years time. They have said all my symptoms are due to my Fibromyalgia and I am no longer B12 deficient. I not sure how long these 6 injections last in the blood for? So I cannot get any further help.
Write a letter as I suggest in my first reply.
Include the BCSH paper - onlinelibrary.wiley.com/doi...
Ask them -
What was the cause of your B12 deficiency, and what evidence led them to that conclusion.
Why are you not receiving treatment as recommended in the British National Formulary.
Why are they sure that you will not suffer neurological damage as a result of being undertreated.
Send copies to the doctor, the head of the practice, the local paper, the local TV.
How can they know whether or not you have Pernicious Anaemia if they refuse to run any of the tests ? Despite the fact that they are in the main unreliable, which I doubt they are aware of anyway.
If you do have PA, it is incurable and needs ongoing treatment in the form of B12 injections to manage the condition. Forever.
The loading doses - the 6 injections - were supposed to be an initial boost and the first one should have been administered as soon as possible. All 6 within 4 weeks. Then the treatment begins: guidelines state 2-3 months. If you already have neurological symptoms, they should continue with frequent injections: every other day until no more improvement - to be reviewed after 3 weeks.
These are guidelines, and patients should be treated as individuals - some people get more than every 2-3 months. My cousin gets her injection every 6 weeks and is doing well on this frequency.
I had my first loading injection in February 2016. The first injection I actually felt at all was 2 days before Christmas that year. No feeling and nothing was happening to my symptoms either, so I was beginning to think they weren't even injecting me at all !
When I was first found to have B12 deficiency, my level was 196 ng/L, the range started at 197 ng/L. Your B12 was below half that level. Please ask them why.
I think, as fbirder does, that this question should be in writing. Read Sleepybunny 's reply above and have a look at the link first. Good luck.
Hi,
Link about "What to do next" if B12 deficiency suspected
b12deficiency.info/what-to-...
Unhappy with Treatment (UK info)?
If you need help with how to phrase a letter, this link below has letter teplates that you can abse your own letter on.
Letters could contain symptoms list (especially any neuro symptoms, test results, relevant family/personal medical history (helpful if GP knows about relatives with PA /other auto immune conditions), extracts from b12 documents etc.
In UK, letters to GPs are supposed to be filed with medical records so less likely to be ignored.
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.
I suggest reading all of these documents/articles below.
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
Has your GP followed process on above flowchart?
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...
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.
"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".
If you think there's a possibility of PA, worth joining and ringing PAS office.
PAS office is open Sat am and some other mornings.
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....
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.
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
If you have neuro symptoms eg tingling, pins and needles, numbness, burning sensations, insect crawling sensation, weakness in limbs, memory problems,balanceproblems plus others, worth drawing attention to risk of damage to spine if untreated or under treated.
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...
I had a spinal fusion operation 6 years ago, which they said worked but failed as I am worse than before
Did you have nitrous oxide during operation?
Nitrous Oxide
gov.uk/drug-safety-update/n...
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...
Coeliac Disease
NICE guidelines Coeliac Disease suggests people with unexplained B12 deficiency should be tested. There are two tests that are recommended tTG IgA and Total IgA, GPs sometimes forget to order both.
nice.org.uk/guidance/ng20/c...
Coeliac Blood Tests
coeliac.org.uk/coeliac-dise...
H Pylori infection?
patient.info/digestive-heal...
Any chnace of internal parasites eg fish tapeworm? Do you ever eat raw fish eg sushi/smoked salmon etc?
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...
Access to Medical Records (England)
nhs.uk/NHSEngland/thenhs/re...
england.nhs.uk/contact-us/h...
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...
If GP needs help then PAS have section for health professionals.
pernicious-anaemia-society....
I am not medically trained.
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