I apologise in advance as this post will be quite long but I want to give as much info as possible about my situation.
I have an autoimmune disease and take immune suppressing medication for it. Consequently I have regular blood tests, looking at, among other things, my WCC. Over the past few years my WCC has been in general decline and my neutrophil count has regularly dipped to 1.6. It recovers, but it doesn't recover as much each time. The level only went back up to 2 last time before dropping again to 1.6. My rheumatologist has said if the level goes down to 1.2 I will have to stop the immune suppressing drugs, which I really do not want to do.
I researched on the web to see if there was anything I could do to boost my neutrophil level and B12 came up as a possible solution. I could not, however, find anything to say whether this would work if the low neutrophils were drug induced.
In December 2018 I had tested as B12 deficient (result 157pg/mL, range given as 180-914pg/mL) and I was given 6 loading injections over 2 weeks then 12 weekly injections for a year. I was told I was "not that low" but I was experiencing numbness and pins and needles at night in my little and ring fingers on both hands going up to my elbows, extreme fatigue etc. so the GP agreed to inject. She ordered the intrinsic factor test but the nurse messed up and did not take enough samples so I ended up having that test on 9/JAN/2019. My last B12 injection had been 7/JAN/2019 which was one of the loading doses. The result of the test was 3u/mL.
In Feb 2020 my B12 was tested again and the result was 534pg/mL (normal range now 145-914) and I was told not to continue with injections as I did not have PA.
Which brings us to the current time. After reading that B12 may help my neutrophil level I remembered that my neutrophils had been low when my B12 was found to be low so I visited my GP to discuss. Amazingly I got a female GP who treated me like an intelligent woman and not like I was suffering with hysteria. She decided to test my B12 and folate to see what my levels were.
The latest tests results were 189pg/mL (range still 145-914) so within "normal" limits - but it means in 2.5 years I have lost over 90% of the B12 I had received from the injections. This makes me wonder if I have been absorbing anything at all from my diet as I read that the body stores B12 for between 2-4 years. At this rate I will be back down the pre-injection level before 3 years have passed.
I am not vegetarian or vegan. I discovered I am lactose intolerant about 18 months ago, so I do not have milk, but I use Oatly (which is fortified with B12). I do have small amounts of cheese which is naturally low lactose and I also add fortified nutritional yeast to dishes. I eat eggs, red meat and poultry, so I feel that my diet should provide at least some if not all my B12 requirements.
So, all this has made me question a few things:
Are the low neutrophils actually drug induced - could they be linked to a B12 absorption problem?
Did I have a false negative IF result - especially as the blood was taken 2 days after an injection (possibly just over 48 hours between the two but my patient record does not record the time!)
I DO have gastro problems that have been brushed off for years. In the end I paid to see a gastro privately who thankfully agreed to take me on his NHS list. The first test he ordered was B12, B9 and Vitamin D. This test was taken a week before the GP test but I do not have the results yet. The GP test showed my folate was 15ng/mL. I already take 1000iu of Vitamin D daily as I have latent TB and have to ensure I keep my vitamin D level up. So, it may be I am not absorbing the B12 because of a gastro problem but I am not convinced that PA has been conclusively ruled out.
I have a lot of the symptoms listed on the PAS website (I think about half of the symptoms listed) including a number of the neurological symptoms.
Should I be pushing for another IFAB test? Should I ask for a different test or to see a specialist? Any advice is greatly appreciated and thank you for reading to the end!
Yes B12 levels look low & yes it can cause the symptoms you describe. IFAB can be negative in 50% of people with PA so it's not foolproof. Clinical symptoms should guide even in the absence of demonstrated B12 deficiency. What you describe does sound a lot like PA. I'm not medically trained.
Tests you can get include: active b12, homocysteine, MMA, folate, and of course you can retest antibodies.
Neurological symptoms call for every other day injections (hydroxo) or daily (cyano) until no further improvement! You can also self-inject in the absence of help from specialists.
Can you share what country you're in, as each country has their own guidelines and such.
Hopefully other members will be around to provide some links.
I suggest that you find the local B12 deficiency guidelines for your area.
One way to find them is to submit a FOI (Freedom of Information) request to Mid and South Essex ICS asking for a copy or a link to local B12 deficiency guidelines.
The best proof for P.A. to your doctor is a positive result for the Intrinsic factor antibody test . But this only happens in about 50% of P.A. patients . Although it is medically acknowledged that a negative IFAB test is not proof that you don’t have P.A. ,many doctors do not accept this . Most doctors also believe that if your B12 blood serum result is within normal range , that you can’t have P.A. ( another fallacy !) Doctors should really go by your symptoms , but mostly do not . Also at the moment many GPs are trying to eliminate giving as many B12 injections as possible , by insisting on B12 testing and wanting positive IFAB tests from patients who are receiving B12 injections . A member on this forum ( Nackapan) has received a letter from her surgery to this effect There is no 100% reliable test for P.A.
Unless you can show a positive IFAB test , most P.A. patients here in U.K. will have difficulties in getting treatment l And even if they get that far , and need more that the arbitrary 1 injection in 3 or 2 months ., they will find that almost impossible .
I realise this sounds very negative , but I don’t want to paint a rosy picture I have read too many stories from PA patients in difficulties.. You may be lucky and have an enlightened GP, who thinks out of the box . I wish you all the luck in the world
If you have difficulties , come back here to get help . 👍
Thank you for your reply. I am very used to battling with healthcare professionals - it took 25 years to get anybody to take me seriously and refer me to rheumatology where I was swiftly diagnosed with an autoimmune condition. I would be shocked if this was going to be easy! They already seem to move the goalposts (the normal range is now starting much lower than it was 3 years ago) and I suspected it was because there was a drive to reduce the number of injections given on the NHS. I will request a second IFAB test I think - if my GP won't do it I will ask my rheumatologist or gastro if they can order it. The GP who ordered the B12 test was very good but unfortunately she is going on maternity leave, so I am trying to get as much as possible in place with her before she goes.
If you click on "project documents" then on "consultation comments and responses" it gives a good insight into current issues around diagnosis and treatment (over 40 pages).
See Cautions section in above link which says that folic acid should never be given on its own for PA (Pernicious Anaemia) or other megaloblastic anaemias caused by Vit B12 deficiency as this may lead to SACD, subacute combined degeneration of the spinal cord.
Local B12 deficiency guidelines
CCGs (Clinical Commissioning Groups) in UK were replaced by ICBs (Integrated Care Boards) on July 1st 2022.
It's likely that ICBs will take on the clinical guidelines of the CCGs they replaced. If you can't find the local b12 deficiency guidelines for your ICB, search online for the CCGs guidelines.
Each ICB/Health Board/NHS hospital trust in UK is likely to have its own local guidelines on treatment/diagnosis of B12 deficiency.
Worth tracking down the local guidelines for your area of UK and comparing the info with BNF, BSH and NICE CKS links.
Some local guidelines have been posted on forum so try a search of forum posts using terms "local guidelines" or try an internet search using "name of ICB/CCG/Health Board B12 deficiency guidelines" or submit a FOI (Freedom of Information) request to ICB/Health board asking for a link to or a copy of local B12 deficiency guidelines.
Read blog post below if you want to know why I urge UK forum members to find out what's in their local guidelines.
I think it's helpful to know some of the common wrong ideas that health professionals have about B12 deficiency in case you meet a GP or specialist who has misconceptions.
B12 article from Mayo Clinic in US
The Many Faces of Cobalamin (Vitamin B12) Deficiency
Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, more UK B12 documents, B12 books, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.
Some links may have details that could be upsetting.
Thank you, I will take a look at all of these! I am hoping that my case will be considered a little differently as my biologic medication is at risk of being stopped if my neutrophil count doesn't go up and there is evidence that B12 and neutrophils are linked. I think it's quite sensible to propose that another IFAB test is done, I take a supplement for a while and then test B12 again to see if the number has increased. I know from experience though that the NHS doesn't always deal in sensible!
I know! Why 180 was the lowest figure but now it's 145 can only be some kind of cost cutting exercise. I had neurological symptoms at 157 and I have them now at 189. It seems very short sighted to refuse injections, surely the problems caused when the B12 levels get really really low will cost a lot more to rectify. What also concerns me is that my low neutrophils were immediately said to be caused by my medication with no investigation - even though it is actually quite rare for the meds to cause neutropenia. Thank goodness for Google and forums!
Ps I have the neurological symptoms as well, it’s shocking what’s going on when it comes to pernicious anemia or vit b12 deficiency, I’m blown away that they actually get away with this!😳🤬
I got the same neutrophil 12.3 9/L way above 2.0-7.0 I’m at 199 ng/l vit b12 was 186/ng/l in July have taken supplements as GP won’t replace, seeing private consultant who says 100% I have PA! it’s all about money shocking really they’d cure loads of people no doubt if they gave Vit b12 injections, big Pharma would lose out massively! Pays to keep dishing us multiple pillls to treat things we really don’t have than to actually make us better🤷♀️
I do find there seems to be a knee jerk reaction "let's treat the symptoms" rather than "let's find out why these symptoms are occurring". And nothing seems to be shared with other health professionals either! If I don't have PA it's my gastro problems that are stopping me from absorbing B12, which is potentially lowering my neutrophils which in turn will mean I have to stop my immune suppressing drugs which means my immune condition will flare up which will mean hospital treatment! Why has it taken me, medically untrained, to point this out? It's not hard!
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