After correcting a folate deficiency at the beginning of the year my B12 levels were borderline in April (212). I decided to wait things out rather than supplement or pay for private PA testing.
Folate and B12 levels have dropped again:
B12 184 (211 - 911 ng/L)
Folate 4.6 normal = above 5.4 ug/L
Ferritin 15 (10 - 291 ug/L )
Serum transferrin 2.5 (2.5 - 3.8 g/L)
Serum iron level 17 ( 9 - 30 umol/L)
Transferrin saturation index 27%
FBC normal so no anaemia.
I eat a whole-food plant-based diet that includes eggs, dairy and fish so don’t think it’s diet related. Also dx with Hashimotos, endometriosis and fibromyalgia.
I’ve been instructed to book a call with my GP and would be grateful for any advice about what I should do next. Thank you! 😊
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Check the local B12 deficiency guidelines used by your ICB (Integrated Care Board) or Health board as treatment patterns may be different to those in NICE CKS document.
May also be worth checking ICB/Health Board Anaemia/Macrocytic anaemia guidelines as well.
2) find out why your B12 levels are dropping.
If it's not linked to diet then I would expect them to at least test you for PA (Pernicious Anaemia) and Coeliac disease.
You may need to prove to them that it's not diet related.
You could write out a typical weekly diet, all food and drink and highlight B12 rich and folate rich foods.
Some laboratories suggest leaving at least 48 hours after a B12 injection before testing IFA and some say up to two weeks after.
A negative result in Intrinsic Factor Antibody test (IFA/IFAb) does not rule out PA. Some GPs may not realise it's possible to have Antibody Negative PA.
Diagnostic flowchart from BSH Cobalamin and Folate Guidelines which mentions Antibody Negative PA.
PAS website has a members' helpline, lots of useful leaflets and a page for health professionals. PAS membership is separate to membership of this forum. You do not need a PA diagnosis to join.
"After correcting a folate deficiency at the beginning of the year my B12 levels were borderline in April (212)."
I hope your GP is aware that treating a folate deficiency without treating a co-existing B12 deficiency may lead to neurological problems.
From NICE CKS B12 deficiency and Folate deficiency
"Check vitamin B12 levels in all people before starting folic acid — treatment can improve wellbeing, mask underlying B12 deficiency, and allow neurological disease to develop."
B12 deficiency (and folate deficiency) may lead to macrocytosis (enlarged red blood cells).
Iron deficiency may lead to microcytosis (small red blood cells).
In a person with both B12 deficiency ( or folate deficiency) and iron deficiency, MCV (Mean Corpuscular Volume) on Full Blood Count (FBC) may appear to be normal range as the effects of iron deficiency mask the effects of B12 (or folate) deficiency.
Some of your iron tests appear borderline or not very far up the range.
Point 1 is about being under treated for B12 deficiency with neuro symptoms present.
Time is of the essence in treating B12 deficiency. Delayed or inadequate treatment increases the risk of developing permanent neurological damage. In severe cases the spinal cord can be affected.
If you are concerned about inadequate treatment, may be worth discussing risks of permanent neuro damage with doctors in a letter and face to face. Maybe show them this PAS article about SACD, sub acute combined degeneration of the spinal cord...it may make them take more notice of your concerns.
PAS article about SACD, sub acute combined degeneration of the spinal cord
Sleepybunny thank you for all of this information.
I’ve eaten the same kind of diet all my life so don’t think it can be the cause unless adding HRT into the mix has been enough to make my levels drop so drastically. Folate and B12 have been trending downwards over the past 3 years. It’s the second time within a year that I will need to correct low folate. My GP has tested twice for coeliac within the last 18 months but never thought to ask if I eat gluten - I’ve been gluten free for at least 5 years so doubt it would show up.
Discussions about symptoms have been minimal to say the least - my GP is always keen to test and go from there.
I’ve just had a text saying my B12 and folate are a little low but need further tests (imagine for PA) before discussing replacement needs so that’s encouraging. 🙂
!My GP has tested twice for coeliac within the last 18 months but never thought to ask if I eat gluten - I’ve been gluten free for at least 5 years so doubt it would show up."
Might be worth disussing with GP that you are gluten free and whether you need a referral to gastro-enterologist.
NICE guidelines coeliac disease suggest that people with suspected coeliac disease should be referred to gastro-enterologist if they have already cut out gluten from their diet.
Maybe you could show section 1.1.5 to your GP and point out you weren't eating gluten when GP tested you.
"If people who have restricted their gluten intake or excluded gluten from their diet are reluctant or unable to re‑introduce gluten into their diet before testing:
refer the person to a gastrointestinal specialist and"
and section 1.3.3
"Refer people with negative serological test results to a gastrointestinal specialist for further assessment if coeliac disease is still clinically suspected."
Gluten is in so many things....how strict are you with the GF diet?
I'm also GF and avoid malt vinegar, beer etc.
Some coeliacs are also sensitive to the protein arvenin in oats which is similar to gluten.
More info on Coeliac UK website. They have a useful helpline.
"I’ve just had a text saying my B12 and folate are a little low but need further tests (imagine for PA) before discussing replacement needs so that’s encouraging."
If you have symptoms consistent with B12 deficiency, treatment should start soon.
See Links to symptoms lists in one of my reply.
If they are slow about starting treatment you could show them these quotes from Summary of BSH Cobalamin and Folate guidelines...
"The clinical picture is the most important factor in assessing the significance of test results assessing cobalamin status since there is no "gold standard" test to define deficiency"
"In the presence of discordance between the test result and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment"
Thank you Sleepybunny I’m sure I’d have experienced more severe GI symptoms if I was coeliac - have had dx of IBS in the past but digestive issues, whilst in the picture, are minor compared to other symptoms. I eat oats and have had two beers this year but am otherwise strictly GF.
Appreciate the extra info - it’s somewhat academic when the next blood test appointment is 8th December! The only way I can speed things up involves a trip to the surgery for paperwork then the hospital for a blood draw which, alongside juggling full time work and caring for elderly parents with health issues and dementia, feels like a major hassle, but I do need answers…
Your doctor might recommend a B-12 test if you have:
tingling in the hands and feet
problems with balance
a racing heart
confusion
dementia
weakness
loss of appetite
You may also take this test if your doctor suspects you might have pernicious anemia. Pernicious anemia is a reduction in red blood cells. It occurs when your intestines can’t absorb vitamin B-12, which is necessary for red blood cell production. Symptoms are not often seen in people younger than 30 years old. The average age of diagnosis is 60.
Symptoms of this condition include:
diarrhea or constipation
exhaustion
loss of appetite
pale skin
inflamed red tongue, or gums that bleed
High serum folate levels
Your doctor might also test your vitamin B-12 if you have high serum folate levels. High serum folate levels may mask vitamin B-12 deficiency and worsen the symptoms, according to the National Institutes of HealthTrusted Source (NIH). Serum folate measures the level of folic acid in the blood. Folic acid is necessary for your body’s growth and development and the production of red and white blood cells and platelets."
---------
Reality - (atrial fibrillation patient)
Before I had my stroke, my Locum doctor had already spoken to my doctor and said that my vitamin b12 readings were far too low for my health, Unfortunately, my doctor did not really look at the problem that I had a low vitamin b12 reading - even in pill remit, - and between 2014-2015, I then had a stroke. After the stroke - , the Locum doctor again noted that my vitamin b12 stroke was still far too low - therefore, my doctor - noted that my vitamin b12 readings were still to low, thus, did put me on a course of vitamin b12 injections -otherwise, my health levels were deteriorating rapidly.
Consequences :
The affects of vitamin b12 and other correlated studies are not always observed intentionally - thus, therefore, insisting that when a patient is vulnerable - it the patients automatically right to be observed by the whole health picture - andis vital for every patients remit.
mary70 thank you for your kind reply and am so sorry it took a stroke for the medics to pay proper attention to your B12 levels. I hope that treatment has improved things for you. 🌸
What is relevant is that after the stroke, I did receive vitamin b12 injections plus warfarin . And since I am against antiBeta blockers, I avoid being offered different types of medicinal pros and cons. The reason that I wrote about the important affects of vitamin b12,, is because it saved my life.
The reality is finding out is to what are the best source of vitamins that are relevant according to ones life style and available that includes Vitamin D + ++
Peripheral neuropathy can be associated with B12 deficiency and sometimes with folate deficiency.
If they seem unaware that B12 deficiency with neuro symptoms requires more intensive treatment, you could ask them to look at their BNF book Chapter 9 Section 1.2 or at online BNF entry for hydroxycobalamin.
Sleepybunny thank you for all your support. My GPC test has come back negative so intrinsic factor anti-bodies were not tested. I’m not sure what my next step should be. I don’t have profound neurological symptoms but do have tinnitus, nerve pain, tingly fingers and worse muscle spasm and fatigue than usual. My TSH is over 2 again so an increased dose of Levo is indicated. I have actually increased the amount of dairy, fish and eggs in my diet since a borderline B12 test in April - I can’t understand why B12 has fallen so fast and why I’m folate deficient again within a year - can this just be the consequence of a struggling thyroid?
"I have actually increased the amount of dairy, fish and eggs in my diet since a borderline B12 test in April - I can’t understand why B12 has fallen so fast"
I'm not a health professional but if you have increased dietary B12 but your levels are falling that to me hints at some kind of absorption issue in the gut.
If you're in UK, I'm surprised that you were tested for GPCA (Gastric Parietal Cell antibodies) first and that a negative result in GPCA meant you were not tested for IFA.
GPCA test is sometimes called PCA (Parietal Cell Antibody test) and Anti- Parietal Cell Antibody test.
The usual test in UK is IFA (Intrinsic Factor Antibodies) test although GPCA is sometimes done as well.
This UK link below from NICE CKS (Clinical Knowledge Summary) for B12 deficiency and Folate deficiency, explains some of the issues with both GPCA and IFA tests.
"Antibodies to IF are very specific for pernicious anaemia, however, they are present in only 50% to 70% of people with the condition.
Anti-parietal cell antibodies occur in 90% of people with pernicious anaemia, however, they are less specific and common in older people"
If half of people with PA don't have a positive IFA result and 10% of people with PA don't have a positive GPCA result then I suspect there are a few people who have negative results in both of these tests.
Does your GP know that it's possible to have Antibody Negative PA? See flowchart below.
"Patients negative for intrinsic factor antibody, with no other causes of deficiency, may still have pernicious anaemia as a result of poor sensitivity of the test and should be treated as anti-intrinsic factor antibody negative pernicious anaemia. Lifelong therapy should be continued in the presence of an objective clinical response."
I think you should push for a IFA test. This is available privately in UK. A high street chain of chemists (not Boots) offer this privately.
If you're in UK, check your ICB(Integrated Care Board)'s B12 deficiency guidelines (or Health Boards if in Wales/Scotland) to see if it recommends testing IFA in suspected PA cases.
Some laboratories suggest leaving 48 hours after a B12 injection and some say leave as much as two weeks before testing IFA.
There are other tests as well as IFA and GPCA that can help to diagnose PA (Pernicious Anaemia.
Have you had a gastrin test?
Maybe you could ask GP to do this or ask to be referred to specialist who can order it if GP can't. I think it's possible to get it privately in UK but expensive.
When a patients tests negative for antibodies, but Pernicious Anaemia is likely, this test can be used. 85-90% of patients with Pernicious Anaemia will have a high serum gastrin."
Any chance of internal parasites eg fish tapeworm?
Have you eaten raw or uncooked fish in past eg in sushi, smoked salmon etc.
Have you lived or stayed in an area where internal parasites are common?
One potential clue that an internal parasite might be common is a rise in eosinophils, a type of white blood cell. Eosinophil result will be part of FBC (Full Blood Count).
Search online for "parasites B12 deficiency" for more info.
Medicines/drugs
Has your GP reviewed any medication you are on. There are some drugs eg metformin, a diabetes drug, PPI drugs, some anti-epileptic drugs and others that have been associated with low B12 levels and some with low folate levels. Any concerns about medication should always be discussed with your GP. Local pharmacist may also be useful to talk to.
PA is a condition that often occurs in people with auto-immune thyroid disease.
Might be worth joining and talking to PAS if not already a member. It's open to people worldwide and you do not need a PA diagnosis to join.
It would be helpful to know which country you are in as patterns of treatment and diagnostic process for B12 deficiency and PA can vary between countries and it would help people to post the most relevant info.
"I don’t have profound neurological symptoms but do have tinnitus, nerve pain, tingly fingers and worse muscle spasm and fatigue than usual. "
Has your GP got a list of your symptoms? I used list below and added extra symptoms at bottom.
I think BSH Cobalamin and Folate guidelines (UK health document) make it clear that people who are symptomatic for B12 deficiency should be treated without delay to avoid neurological damage.
Has your GP suggested taking any iron supplements? Maybe you could ask f you would benefit from taking a low dose iron supplement with RDA (recommended daily amount) in it. Local pharmacist may also be worth talking to.
See link about iron tests in my first reply.
I learnt a lot from reading about other people's experiences so might be worth reading other threads and searching forum posts if you have the time and energy.
Thank you so much Sleepybunny I don’t have time for a long reply right now but to answer some of your questions:
I’m in the UK. I do have thyroid autoimmune disease - Hashimotos. The lack of an IFA test seems to be down to lab policy not to test if GPA negative.
This the second time within a year that my folate levels have become deficient so, like you, I suspect it’s an absorption issue.
I have eaten sushi and smoked salmon in the past but not lived in an area known for intestinal parasites. Eosinophil count is low side of normal so no clues there.
The only meds I’m on are Levothyroxine and a daily antihistamine.
GP is more interested in blood results than discussing symptoms but I’m hopeful I can discuss further in a follow up consult. No-one bats an eyelid about low ferritin when my haemoglobin levels are ok.
I have read posts across the site avidly and can access medical journals so will keep up my reading!
"but I’m hopeful I can discuss further in a follow up consult. "
Might be worth expressing concerns to GP in a letter before next appt or after next appt if unhappy and may be helpful to send to practice manager as well.
Some of the potential advantages of writing a letter are
1) Letters avoid face to face confrontation with GP and allow patient time to express their concerns effectively.
2) Harder to ignore a letter in my opinion. Keep letters brief, to the point and polite.
3) Proof a letter was received may be useful if there is a need for a formal complaint in the future.
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.
4) Letters are proof that an issue has been raised.
My understanding is that in UK, letters to GPs are supposed to be filed with medical notes.
I included a request in letters that a copy of letter was filed with medical notes. Useful to have a paper trail in case there is a need for a formal complaint.
Keep copies of any letters sent or received.
Letters could contain some of the following but in my opinion, the shorter the letter the more likely GP is to read it.
relevant test results
date of diagnosis
relevant family/personal medical history
quotes from UK B12 documents
requests for referrals to relevant specialists
There are potentially disadvantages too...
Writing letters may irritate them and affect GP/patient relationship. I gave up worrying about upsetting GPs after deteriorating to the point of dementia and spinal symptoms.
"No-one bats an eyelid about low ferritin when my haemoglobin levels are ok."
Have a look a section on what test result means in link below. It has a summary chart worth looking at.
If you have time, try to find your ICB or Health Board's guidelines on iron deficiency anaemia and macrocytic anaemia.
Relatives
Might be worth talking to your blood relatives about low B12.
PA and Coeliac can run in families as can some other health conditions that affect the gut. Tell your GP about any gut conditions in family as this may give them clues.
Have a look at these conditions
SIBO (Small Intestine Bacterial Overgrowth)
Crohn's disease
Diverticulitis
There are other conditions that can affect absorption in the gut.
The website GUTS UK discusses many conditions affecting the gut.
With auto-immune thyroid disease, I still think PA and/or coeliac disease might be possibilities.
When I was at my worst with over 50 typical symptoms, I had a set of GPs who wouldn't listen to me.
I tried really hard to exclude every possible diagnosis I could and in the end, only B12 deficiency was left as a possibility but I still couldn't get treatment.
I was forced to treat myself as are many UK forum members on this forum when NHS treatment is not enough.
Some get extra B12 injections from private GPs or beauty salons, some try high dose oral tablets (1000mcg or above) but these don't work for some people and some as a last resort turn to self injection (SI). There is a pinned post and forum posts about this.
I’m sorry you had such a long and tough journey towards a diagnosis. Had GP consult today - she’s definitively ruled out PA due to negative GPA test and thinks my levels are a ‘bit low’ due to combination of being on HRT, hypothyroidism and possibly diet. I asked about malabsorption but she said she’s not concerned as I’m not complaining about ‘everything running through me’ so supplements (B12, folate and iron) all round and retest in 3 months. I ‘don’t meet the criteria’ for B12 injections.
I'm not medically trained but I don't think she should rule out PA although I think that a negative result in GPCA test probably makes it less likely.
These days I'm quite confrontational after my bad experiences in past.
In a similar situation, I would be tempted to write GP a letter explaining why I thought PA could still be a possibility and I might include some or all of the below.
1) NICE CKS B12 deficiency and Folate deficiency says in Background - Causes section
"Anti-parietal cell antibodies occur in 90% of people with pernicious anaemia, however, they are less specific and common in older people (for example, 16% of women aged over 60 years) who do not have pernicious anaemia."
My point would be that 10% of people with PA do not have parietal cell antibodies.
2) PA can lead to gastritis which leads to loss of parietal cells.
No or few parietal cells means no or few parietal cell antibodies.
3) Folate and B12 results trending downwards over three years (worth including results in any letter) which providing you haven't radically changed your diet is suggestive of a possible absorption issue.
Push for a IFA test but bear in mind this can be negative in people who have PA.
" It’s the second time within a year that I will need to correct low folate. "
Did GP prescribe folate treatment?
It's vital that in someone with both B12 and Folate deficiencies, B12 treatment should be started first. Treating folate deficiency without treating a co-existing B12 deficiency can lead to neurological problems.
NICE CKS for Anaemia - B12 deficiency and Folate deficiency says in Management section
"Check vitamin B12 levels in all people before starting folic acid — treatment can improve wellbeing, mask underlying B12 deficiency, and allow neurological disease to develop."
If you're a PAS member, think about ringing their helpline to see if they can suggest any useful info.
I still don't have a diagnosis of PA just an agreement with current GPs that my symptoms are typical of B12 deficiency and B12 injections improve them.
Although I think at one point I should have been diagnosed with Antibody Negative PA, these days I suspect I have a rare problem in metabolising B12 rather than PA. I need far more B12 than NHS allows me, to function.
"she’s not concerned as I’m not complaining about ‘everything running through me’"
I don't think everyone with PA has obvious gut issues at the start of illness. Some people with B12 deficiency present with psychiatric and/or neurological symptoms rather than gut or blood symptoms.
Some people like me have experienced alternating constipation and diarrhoea. I didn't have everything running through me.
I ‘don’t meet the criteria’ for B12 injections."
I'd want to know what those criteria were.
Apologies if I asked before but have you found your local B12 deficiency guidelines?
Thank you as ever for such a thoughtful and comprehensive reply Sleepybunny . I'm not used to challenging the medical profession so it feels very uncomfortable.
I dug the following article out of the med journals and it's quite emphatic that GPA testing is a valid screening test for PA and rules out the need for IFAB:
"Of 847 samples identified in the retrospective study, 4 (0.47%) were positive for only intrinsic factor antibodies, 731 (86.3%) positive for GPC alone, and 112 (13.2%) for both. ... 91 consecutive patients with low B12 levels were tested for both autoantibodies; all were negative for gastric parietal cell antibodies. Only one sample was positive for intrinsic factor antibody using the porcine intrinsic factor assay, but was negative by a human recombinant intrinsic factor-based ELISA."
Khan S, Del-Duca C, Fenton E, et al Limited value of testing for intrinsic factor antibodies with negative gastric parietal cell antibodies in pernicious anaemiaJournal of Clinical Pathology 2009;62:439-441.
More details in the downloadable PDF. It's confusing as the ranges used for my tests don't correspond to those in the document. Current ranges for B12 are 211 - 911 ng/L and folate above 5.4 ug/L. GP considers 184 ng/L to be mildly deficient.
GP has prescribed folic acid and has recommended that I supplement with 1000/500 B12 plus iron daily.
Like you I feel I may need to accept that I won't get to the bottom of falling levels and, with the odds set out in the above article, I could be embarking on expensive testing for nothing.
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