Last April I had a B12 test done and the Dr actually rang me and told me I had low B12, very low B12, it was 57. So I had a course of the 5 injections and was advised to just take b12 supplements and eat more meat.
In September there was no real improvement and i was tested again and my reading was 165, just carry on takin* the supplements and change of diet you’ll be ok. I’ve been tested for pernicious anaemia and it came back negative. (Could this come back as a false negative?)
Anyway just had the test done again and I’m now at 136, and starting another course of 5 injections.
Dr is flummoxed as to why it’s dropping so now having bowel cancer tests and a possible endoscope.
Has anyone else had falling b12 even with supplements and diet change? Or being a male am I just being awkward??
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Lemon1230
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Hi, first don’t blame your concerns on your gender. All of us who suffer from B12 deficiency are together in this. The group here is supportive. I’m about to find out if my B12 has gone up after taking sublingual B12 only. I’m most definitely NOT a doctor but your doctor seems to be misleading you. Your levels are very low. It really sounds like you are not absorbing well enough through food and oral supplements. (Yes maybe false negative on PN, but the bottom line is to treat to reduce symptoms) That last drop in your blood test was an indicator. Glad you are doing injections but it seems you may need more than 5 here and there but a consistency of injections until there is NO more improvement with how you feel. Then you would begin a maintenance schedule determined by you and you doctor. It will be good to hear from others. Keep reading others’ posts and what PAS has to say. Possible to find a doctor more knowledgeable about the subject? Many of us learn and self advocate with our doctors. How are you feeling by the way?Wishing you well!
Anyone at any age, can become B12 deficient. However, certain people are at an elevated risk. They include the following:
Vegetarians, vegans and people eating macrobiotic diets.
People aged sixty and over
People who’ve undergone any gastric and/or intestinal surgery, including bariatric surgery for weight loss purposes (Gastric bypass).
People who regularly use proton-pump- inhibitors. H2 blockers, antacids, Metformin, and related diabetes drugs, or other medications, or infections such as h-pylori that can interfere with B12 absorption.
People who undergo surgeries or dental procedures involving nitrous oxide, or who use the drug recreationally.
People with a history of eating disorders (anorexia or bulimia).
People with a history of alcoholism.
People with a family history of pernicious anaemia.
People diagnosed with anaemia (including iron deficiency anaemia, sickle cell anaemia and thalassaemia).
People with Crohn’s disease, irritable bowel syndrome, gluten enteropathy (celiac disease), Pancreatic insufficiency, or any other disease that cause malabsorption of nutrients.
People with autoimmune disorders (especially thyroid disorders such as Hashimoto’s thyroiditis and Grave’s disease) Type 1 diabetes, vitiligo, lupus, Addison’s disease, ulcerative colitis, infertility, acquired agammaglobulinemia, or a family history of these disorders.
Women with a history of infertility or multiple miscarriages.
Can you "see yourself" among any of the above people?
Sadly the IFA test is unreliable in that it gives false negatives in people with PA half the time. So a negative result doesn't mean that you don't have PA. However, a positive result is a sure-fire, 95% certain indicator of PA.
it sounds as if your problem is an absorption problem - like PA - the fact that the result of the test for PA was negative is a long way from ruling PA out as IFA test gives false negatives 40-60% of the time (depends on exact test method) - so a negative is a long way from proving that you don't have PA. The most likely explanation for what you are experiencing is that the test result is a false negative
The serum B12 test is only accurate to 20% so the difference between the two tests could in theory have just been down to the accuracy of the test - though the fact that your levels had fallen to that point after the injections also suggests an absorption problem - otherwise the injections would have replenished your B12 stores in your liver and you would be able to use them to maintain your levels (that mechanism is broken if you have a B12 absorption problem).
I suggest you point your Dr to the BCSH standards on diagnosis and treatment of cobalamin and folate disorders which can be found here, highlighting the comments on the anti-body tests and the fact that the standards refer to IFAB-negative PA as a result of the problems with false negatives
Thank you for the response I'm obviously going to have to badger this Dr because he seems to move on very quickly after a test to try something new. I have pins and needles in my hands, its almost like having a layer of glue on my fingers when I touch things sometimes. It's like I'm feeling through something, if you know what I mean. Turns out I've got degenerative disc disease and arthritis in my neck, all c 1 - c6 are damaged. that is now the sole reason for the pins and needles even though if my B12 has been dropping long enough to reach 57 it might be nerve damage through that not just the snipe issue.
Might try and see another Dr but with this covid it's hard enough to see one let alone a different one.
I was diagnosed with degenerative disc disease 25 years ago and so when I got pins and needles in my hands and feet I had been expecting it. Fast forward I tried out B12 patches and it turns out I am B12 deficient. I self inject every other day and have done so for 6 months. Pins and needles are rare these days!
PCA is not recommended as a diagnostic test for PA in UK.
It is still possible to have PA with a negative result in IFA or PCA test but some GPs and specialists in UK seem unaware that it is possible to have Antibody Negative PA.
About 50% of people with PA test negative on IFA test.
About 10% of people with PA test negative on PCA test.
If PA is a possibility...
have you considered joining PAS who can offer support and info about PA?
Point 1 in above link is about being under treated for b12 deficiency with neuro symptoms present.
Point 5 in above link is about being symptomatic for b12 deficiency with an in range B12 result.
The link above has letter templates that people can base their own letters on.
Letters avoid face to face confrontation with GP and allow patient time to express their concerns effectively.
Best to keep letters as brief, to the point and polite as possible. It's harder to ignore a letter in my opinion. My understanding is that in UK, letters to GPs are supposed to be filed with medical notes so are a record of an issue being raised.
Above guidelines indicate that anyone with unexplained B12. folate or iron deficiency should be tested for coeliac.
I suggest you read the guidelines even if you've been tested for coeliac in the past as some GPs don't order all the recommended tests.
Each CCG/Health Board and NHS Hospital Trust is likely to have its own local guidelines on treatment/diagnosis of B12 deficiency. I suggest you get hold of a copy of the local guidelines for your area and compare them with the BSH, BNF and NICE CKS links.
I hope that you are not in the UK area mentioned in blog post below. It has very unhelpful guidelines on the treatment of B12 deficiency.
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). BNF treatment info in this book is out of date, see BNF Hydroxycobalamin link in this reply for up to date 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 (US authors)
Very comprehensive with lots of case studies.
"Vitamin B12 deficiency in Clinical Practice" (subtitle "Doctor, you gave me my life back!" by Dr Joseph Alexander "Chandy" Kayyalackakom and Hugo Minney PhD
B12 Deficiency Misconceptions
It's not uncommon for GPs and specialist doctors to have misconceptions about B12 deficiency so be prepared.
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.
If you have any neuro symptoms, have you been referred to
1) a neurologist?
2) a haematologist?
NICE CKS link in this reply suggests GPs should seek advice from a haematologist for patients with b12 deficiency with neuro symptoms. Has your GP done this?
"and a possible endoscope"
3) a gastro enterologist if gut symptoms present?
A gastro specialist should be able to spot signs of gut damage from PA, coeliac disease, H Pylori infection and other gut conditions that could affect absorption of B12.
Some UK forum members have reported their treatment has been affected by the pandemic.
If you feel that this has happened to you, have a look at these links below.
I've written some very detailed replies with more B12 info that you may find of interest eg more B12 articles, more info about blood tests, more on symptoms of B12 deficiency etc.
I gave my GPs a copy of Martyn Hooper's book "What You Need to Know About Pernicious Anaemia and B12 Deficiency". Anyone who does this might want to point out to GP that BNF treatment has been updated since this book was published.
Thank you that's a lot to read through. I've been tested for celiac and that also came back negative, I did ask it that could be a false negative and I got the answer virtually no chance of that happening. I do appear to be gluten intolerant though. I have started on a gluten free diet where possible. I've had stomach pains and loose bowls movements since the 90s and I did see a Dr about it then and was advised just to up my roughage which didn't work bit I never bothered going back to him about it. I'm now obviously paying the price.I did say to this Dr about it, that my intestines wouldn't heal overnight after potentially 30 years of abuse. And he shrugged his shoulders and yeah probably not but its not PA. When I speak to him next I think I'll ask him for another test just to rule it out, unless I read something in your links.
Sorry to bombard you with so much information. I suggest you read it over a few days.
I suffered for many years with untreated b12 deficiency and got to the point of dementia symptoms and symptoms affecting my spine.
I can't bear the thought of someone else suffering in the way I did.
"I've been tested for celiac and that also came back negative, I did ask it that could be a false negative and I got the answer virtually no chance of that happening."
I recommend you get access to or copies of your test results and check for yourself.
Your GP surgery website should have info on how to access medical records/test results online.
You might want to check if GP ordered both tests below.
1) TTG IgA which checks for antibodies to gluten.
2) Total IgA which checks which patients have IgA deficiency.
Patients with coeliac disease may get a negative result on TTG IgA test if
1) They have IgA deficiency
There are other tests for coeliac disease that GP/specialist can order if a patient has IgA deficiency.
2) If they weren't eating enough gluten before blood was taken for testing.
If patient is only eating a small amount of gluten prior to having TTG IgA test then it's possible that there will not be enough antibodies to gluten circulating in the blood to register a positive test result.
Did your GP tell you to eat plenty of gluten in more than one meal per day for several weeks before your blood was tested? See section 1.1.4 in guidelines below.
People with persisting symptoms suggestive of coeliac disease after a negative test result should be referred to a gastro enterologist. Coeliac disease is sometimes diagnosed by a gut biopsy.
If GP did not test for IgA deficiency and did not tell you to eat plenty of gluten for several weeks prior to blood being tested then it's possible that your coeliac test result is not reliable.
"he shrugged his shoulders and yeah probably not but its not PA"
You could ask him politely and directly why he says it's not PA although some GPs don't enjoy being questioned.
If he says it's because the test was negative, you could then discuss the reliability of the Intrinsic Factor Antibody test and the possibility of Antibody Negative PA.
I suggest putting any queries about treatment/diagnosis into a letter. See letter writing link below.
Letters avoid face to face confrontation with GP and allow patient time to express their concerns effectively.
Best to keep letters as brief, to the point and polite as possible. It's harder to ignore a letter in my opinion.
When a letter is sent to GP, may be worth including a request that GP practice sends written confirmation to letter writer that they have received letter.
I included a request in letters that a copy of letter was filed with medical notes.
My understanding is that in UK, letters to GPs are supposed to be filed with medical notes so are therefore a record that an issue has been raised.
Useful to have a paper trail in case there is a need for a formal complaint over treatment in future.
Letters could contain relevant test results, date of diagnosis, brief family and personal medical history, extracts from UK B12 documents, requests for referrals to relevant specialists but keep letter as brief as possible.
Keep copies of any letters sent or received.
"I do appear to be gluten intolerant though"
There are other forum members who have reported benefits from going gluten free even if they are not coeliac. My IBS symptoms stopped after I went gluten free.
Another name for pernicious anaemia is Autoimmune Metaplastic Atrophic Gastritis (AMAG)
Any chance of internal parasites eg fish tapeworm?
Do you ever eat raw or uncooked fish eg sushi/smoked salmon etc?
One of the potential signs of fish tapeworm infection is an increase in eosinophils, a type of white blood cell. Eosinophil result can be found among Full Blood Count results.
Have you ever lived or stayed in an area where internal parasites are common?
Search online for "B12 Deficiency parasites" for more info.
When people tell me they live in Gloucestershire, my first instinct is to suggest they move to another county if they want effective treatment for B12 deficiency.
Link to the old Gloucestershire guidelines from 2004/2005 which your GP may still be using...
This blog post explains about the new treatment protocol Gloucestershire has introduced which I feel is potentially disastrous as appears to put most patients onto oral tablets.
Gloucestershire has a bad reputation on this forum for how B12 deficiency is diagnosed and treated.
You might want to point out to your GP in a brief letter that BNF (British National Formulary) suggests that patients WITH neuro symptoms should be treated with
A B12 loading injection every other day for as long as symptoms continue to improve then it's a maintenance injection every 2 months.
There is no set time limit as to how long the every other loading day jabs can continue if neuro symptoms present. It could be weeks even months of every other day loading jabs.
You've only had 5 loading jabs!
Your GP can find this info on treatment in their BNF book Chapter 9 Section 1.2 or in this BNF link below.
A patient who is untreated or under treated for B12 deficiency is at increased risk of developing spinal damage as B12 deficiency can lead to the myelin layer around nerves being damaged.
Folate deficiency can also lead to spinal cord damage in some cases.
See info about sub acute combined degeneration of the spinal cord (SACD) in my first reply.
There have been news stories in the Gloucestershire press about patients unhappy with their B12 treatment.
I'd never heard of B12 deficiency when I was diagnosed at a level of 129. I could barely get out of bed and had to literally grit my teeth to do basic tasks like brush my teeth so goodness only knows how you're feeling. I just wanted to say that my deficiency is caused by microscopic colitis but treatment is still the same as pa i.e. injections for life. I now run 5-10km every day and work. There is hope, I hope you get the care that you need.
Thank you Karen. For some reason I feel worse this time round than I did when my level was 57. I work nights as a lorry driver and work has been really good, they give me routes where I dont have to tip the load, (last time I did that it took me 3 days to recover). I'm confident they'll sort it for me, it's just the wait as you are all well aware of that gets you down.
Re your running I could never manage over 400m. I was a sprinter, 20 cigs a day and a sub 11 sec 100 meters in my prime. Gave up cigarettes started living a healthier life hit 50 and my body said sod it I'm off lol.
Wow, that's an impressive 100m! Yep, all goes wrong once you hit 50 eh?! Going back to your original post, if you have an absorption problem for whatever reason, all the meat and supplements in the world won't address your deficiency. Can you find another Doctor with more knowledge in this area? There's so much knowledge and support available to you here. Let us know how you get on ♥️
Hi, Lemon, I was diagnosed with a level of 50 pg/ml at the beginning of 2017. Pins and needles, balance problems, walking with a stick. Several hospitals, peripheral neuropathy.
I realise that i have to self inject, now i am much better , i have more than 700 shots. I wish you well , dont be afraid, you have to be patient and have to struggle.
I think that you had a false negative, it happens around 50% of the time. Unless you were on a vegan diet it's very unlikely you would have such low levels unless you have PA. If you have neurological symptoms you should continue with every other day injections for longer than the 5 they're giving you. My level was the same as yours and my symptoms worsened after starting treatment, it was only after starting to self inject that I saw much improvement. If I had been given more frequent injections at the beginning of treatment I may not now have large fibre neuropathy which a neurologist has said is unlikely to improve after 2 years of injections. Look up all the links you've been given by others on here and don't hesitate to start self injecting, it won't do any harm at all and could save you from permanent neurological problems.
Scientist, not medic. Your IFAb test may have come back as negative, but you can have PA without IFAb. 50% of folks do, it's not the test that's at fault, it's just the way things are. It's the best we have. If it goes up on injections then more injections seem to be the way forward. Good luck.
A very low initial B12 serum test result, an inability to improve on tablets or by dietary changes, a subsequent deterioration - your GP should not be flummoxed by this. No-one here seems to be !
It does sound like pernicious anaemia, whatever the anti-intrinsic factor antibody (IFA) test result showed. In that case, tablets would not help you any more than a B12-rich diet would. You would struggle to absorb sufficient B12 this way - which is the most likely cause for your serum B12 level dropping again, although not the only possibility.
I remember having bowel cancer ruled out at an early stage, not because my GP believed that I had cancer, but that some of the symptoms I presented with had flagged up a warning on her computer. Good to have this eliminated as a possibility.
Perhaps your doctor could be persuaded to give you a trial of every other day injections to see what effect that might have on your neurological symptoms ?
Put your case together- any autoimmune conditions in your close family, for example. A list of your symptoms, the medical guidelines in Gambit's link, reading Sleepybunny's links and suggestions, all of this could help. Your GP won't find something s/he isn't aware of, not without help.
While you are asking, try for folate, ferritin and vitamin D blood tests as these are the most likely to also be affected. Thyroid too, although generally GPs only get TSH tested, and free T4 if you're lucky. For a more thorough thyroid investigation, you can have a private blood test done by post that include two tests for autoimmune thyroid conditions.
Martyn Hooper, founder of the Pernicious Anaemia Society, had three IFA tests before getting a positive result.
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