Hello! I have had anaemia for about a year and my GP has been trying to work out what is causing it. I initially had low-ish b12 so had the b12 injections and my anaemia improved somewhat; since then I have been on the b12 pills instead (as we wondered if i had a dietary deficiency). The anaemia has got progressively worse since the last injection in Feb, but my b12 test results have been normal = I have intrinsic factor (ie don’t have PA), b12 at 526 in June and 845 as of yesterday.
I haven't really been symptomatic for several months. However, this week I have suddenly felt terrible: my heart rate is much higher when I try and go for a run, extreme fatigue, and breathlessness.
The blood test yesterday found a normal level of b12, suggesting that if the test is reliable, this isn't the cause of my worsening anaemia. I have been reading that the test is not that reliable though? In the course of a year, the only thing that has improved my symptoms is the b12 injection, and whilst I know that's post hoc reasoning, I do also have a family history of PA. Iron deficiency anaemia has been ruled out. Should I be insisting on the injection?
Also, should i be concerned about the sudden increase in symptoms? My GP said to call if I felt any worse or have chest pains and I have declined a physical exam for now. I just don't understand how I can suddenly feel so much worse? I ran 8 miles a week ago and now I am struggling to jog at all (indeed to walk!) Thank you for any advice
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greatcrestedgrebe
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I haven’t explained it very well! I meant I have the intrinsic factor, and therefore don’t have PA according to the test. PA= absence of intrinsic factor. Thanks for replying in any case.
"but my b12 test results have been normal = positive intrinsic factor"
Do you mean that you had a positive result in Intrinsic Factor Antibody test?
If your IFA result was positive then it is very likely that you have PA especially as you have a family history of PA. It is possible to have false positive result in the IFA test I think if blood is taken close to a B12 jab or supplement.
"I initially had low-ish b12 so had the b12 injections and my anaemia improved somewhat; since then I have been on the b12 pills instead (as we wondered if i had a dietary deficiency)."
If you had a positive result in IFA test, I don't understand why you are on B12 pills instead of having B12 jabs. PA requires lifelong treatment with B12 and injections are recommended in UK.
Recommended UK treatment for B12 deficiency without neuro symptoms is....
6 B12 loading jabs over 2 weeks followed by a jab every 2 or 3 months
Recommended UK 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 pattern of treatment applies whatever the cause of b12 deficiency even diet, if neuro symptoms present.
"we wondered if i had a dietary deficiency)"
Do you eat plenty of B12 rich food eg meat, fish, shellfish, eggs, dairy, foods fortified with B12? Being vegan or vegetarian can be a risk factor for developing B12 deficiency.
If yes, then dietary deficiency is unlikely and it becomes more likely that there is an absorption problem in the gut eg PA, Coeliac disease, H Pylori or other gut condition.
In UK, proven dietary deficiency is sometimes treated with low dose oral B12 (cyanocobalamin ) tablets although jabs are recommended if neuro symptoms present/B12 deficiency severe.
The small amounts of B12 in low dose cyanocobalamin tablets are unlikely to be enough to treat B12 deficiency due to an absorption problem.
"initially had low-ish b12 so had the b12 injections"
How many injections did you have at start of treatment?
Some more links about B12 deficiency that may be of interest...
Link about "What to do next" if B12 deficiency suspected
Any chance of internal parasites eg fish tapeworm. Do you ever eat raw fish?
Are you on any medication that can affect B12 levels ( or folate levels)?
Do you get copies of all your blood test results?
I learnt to do this after being told everything was normal/no action and then I found abnormal and borderline results on the copies. It affected my trust in doctors.
"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".
There is a recently published book ""Vitamin B12 deficiency in Clinical Practice" (subtitle "Doctor, you gave me my life back!" by Dr Joseph Alexander "Chandy" Kayyalackakom and Hugo Minney PhD " by a retired doctor associated with B12d.org but I haven't read it yet.
Do you have any neurological symptoms eg tingling, pins and needles, numbness, tinnitus, balance problems, memory problems, word finding difficulties, brain fog, restless legs syndrome, vertigo, migraine plus others....?
Have you been referred to a neurologist if neuro symptoms present?
2) Haematologist
NICE CKS link (up page) suggests GPs should seek advice from a haematologist for patients with B12 deficiency with neuro symptoms. Did your GP do this if neuro symptoms present?
3) Gastro enterologist
Do you have gut symptoms? Gastro specialist should be able to spot signs of gut damage from PA, Coeliac, H Pylori etc
I am not medically trained. More B12 info in pinned posts on this forum.
Thanks so much for your detailed reply. I'm going to have a read of the links tomorrow. The good news is my GP is quite reasonable so I think she will be okay with me having the injections, I think she has just been worried that there has been no obvious cause of anaemia. Being armed with the facts about PA will be extremely helpful when I talk with her on Monday!
First to clarify - I tested as normal on intrinsic factor; I have it which is good/healthy, and not indicative of PA. According to the test, anyway. Sorry for the confusion, I have edited my post.
I am semi vegan/vegetarian, when I looked up b12 I realised I may well be dietary deficient. So that's why we trialled the b12 pills. I started these in Feb and my b12 has gone up a bit but my anaemia has got progressively worse. Hence wondering if the b12 test is just wrong.
Re: differential diagnosis. When diagnosed with anaemia last year, I was immediately screened for coeliac - fortunately that was negative. I did have the six loading doses. Fairly sure I don't have tapeworm etc. I have recently got the patient access app which has been invaluable for looking up my exact blood test results. We did wonder whether my taking omeprozole could have contributed, so I stopped that six weeks ago, and I also stopped ibuprofen which I was taking regularly, just in case of a stomach/colon bleed causing anaemia. But anaemia has got worse since then, so i don't think that is causal. I declined the camera assessment for now (gatroscopy? down your throat/up the colon!)
I am finding it difficult to think, particularly at work, but I would say that seems more fatigue than neuro, as first thing in the morning I am okay (before deprived of oxygen I guess). I have unrelated, preceding neuropathic pain and numbness- but this hasn't got worse. My GP has consulted with a haematologist as I have also had decreased white cell count, so perhaps when I discuss PA with her, I can ask her to speak to them again. I don't have gut symptoms. i do have quite a strong family history of PA with my sibling, parent, grandparent and some cousins experiencing it.
Do you have any ideas about why i might suddenly go from quite good functioning, to barely coping? I have found this quite alarming, it is difficult to walk or even sit up for long periods, whereas a week or so ago, I was running long distances.
thank you again and I will definitely be reading all of your links, and I expect I will feel more informed when discussing with my GP.
"I was immediately screened for coeliac - fortunately that was negative"
I suggest checking whether you had both these Coeliac tests..
1) tTG IgA
2) Total IgA
tTG IgA test checks whether patient has a particular antibody to gluten.
Total IgA checks if patient has IgA deficiency. IgA is an immunoglobulin.
Patients with Coeliac disease who have IgA deficiency will not make the antibodies to gluten that the tTG IgA test looks for so their results in tTG IgA test will be negative despite having Coeliac. Patients with IgA deficiency need alternative tests for Coeliac disease...see NICE guidelines and Coeliac UK links for more info.
UK GPs sometimes forget to order the Total IgA test. Did your GP remember?
Before you had tests for Coeliac disease, did the GP tell you to eat plenty of gluten in more than one meal per day for several weeks before blood tests?
One reason for a negative result in Coeliac test is that patient was not eating enough gluten prior to tests so not enough gluten antibodies were circulating in blood to register a positive result.
"Being armed with the facts about PA will be extremely helpful when I talk with her on Monday!"
I suggest trying to speak to PAS before Monday appointment. Best to phone. You will probably need to be a PAS member to access support.
PAS office is open 8am till 12 noon on Sat, Tues, Wed, Thurs. May vary during holiday periods.
Although your IFA test result is "normal" it is still possible to have PA.
I suggest speaking to PAS about Antibody Negative PA (where IFA result is negative or normal range) and looking at BSH flowchart link in my other post which mentions Antibody Negative PA.
Local Guidelines
Something to be aware of is that most areas of the UK have their own local guidelines on treatment and diagnosis of B12 deficiency including PA. Unfortunately some of these local guidelines have not been updated for many years and some of them do not take account of the national guidelines and info in BSH, BNF, NICE CKS links. I suggest tracking down local guidelines for your area of UK and comparing them with national guidelines.
"good news is my GP is quite reasonable "
Help for GP
1) PAS website has section for health professionals. It is free for them to join PAS as associate members.
3) I believe the PAS has access to a GP who understands PA. It may be possible for your GP to speak to this GP but you would need to liaise with PAS.
"We did wonder whether my taking omeprozole could have contributed."
PPI drugs have been associated with B12 deficiency in some studies.
"I declined the camera assessment for now (gatroscopy?"
Gastroscopies may be helpful for spotting signs of gut damage from PA, Coeliac, H Pylori and other gut conditions.
If you have a traditional gastroscopy then there may be parts of the digestive system that are not seen. Down throat and up colon could leave a part in the middle unexamined. There is another sort of gastroscopy called a capsule gastroscopy which I think examines more of the digestive tract.
In the gut, b12 is absorbed in a small area called the terminal ileum. If you have a gastroscopy I suggest asking if the terminal ileum is going to be examined. Damage to the terminal ileum may lead to B12 deficiency.
Were you tested for H Pylori infection?
Neurological Symptoms
If you have neurological symptoms then my understanding of the guidelines (I'm not a medic) is that B12 deficiency with neuro symptoms present should be treated with B12 injections whatever the cause, even diet.
B12 deficiency can lead to cytopenia, where the number of blood cells is reduced. Pancytopenia is where all three types of blood cells, white, red and platelets are reduced.
Cytopenia may involve just one or two types of blood cell being reduced. Thrombocytopenia , where platelets are reduced. Leukopenia, where white blood cells are reduced.
"I have unrelated, preceding neuropathic pain and numbness"
Is your GP sure this is unrelated to B12 deficiency?
What does your GP think caused the neuropathic symptoms?
Some people with b12 deficiency present with neuro symptoms first before any haematological symptoms. Neuropathic symptoms eg tingling, pins and needles , intermittent numbness in body extremities were among the first symptoms I noticed. I had fibromyalgia type pain in muscles, joints, bones etc early on.
If you do an internet search for B12 deficiency and neuropathy, there are plenty of articles.
Many people with pernicious anaemia , do not have anaemia...the name is rather confusing. See BSH Cobalamin and Folate guidelines.
B12 deficiency whether due to PA or other cause can develop very slowly over years and symptoms are sometime put down to menopause (women) or normal ageing.
If you have neuropathic symptoms and numbness then I don't know why you are not on B12 injections.
If neuropathic symptoms are in your feet, have you been referred to a podiatrist?
I believe in some cases , UK podiatrists with appropriate training can prescribe B12 injections.
Has your GP got a complete list of all your symptoms? See links to Symptoms lists in my other post. Probably worth emphasising any neurological symptoms on the list as hopefully GP would pay attention to these.
I hope your GP remembers under treated B12 deficiency may eventually lead to permanent neurological damage including damage to spinal cord, SACD.
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