Hi, bit of a long winded post. I was diagnosed last month with low b12 (150) fbc and ferritin normal. I was told to self supplement, which I am with a b12 spray. I eat a normal well balanced diet with meat products. I am on PPI's for a hiatus hernia so this may have some relation after reading a few posts.
My question is why do I still feel rubbish, even though supplementing. I have brain fogs, exhaustion even after sleeping for 8-9hrs.
In the last 2 weeks I have been having palpitations to the point iv had a 24hr ecg, starting to get anxious and had a ?panick attack at work last week. Could this all be related? The gp said it wasnt yesterday and said I need to wait another month before having my b12 checked.
I'm at my wits end with this and would appreciate some advice and support. Thanks
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flowerpower87
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I suppose the Gp is seeing if you are absorbing b12 orally.
If you continue to feel so ill I would go back and insist on the blood test and if level the same ask for Injections
just my opinion
Anxiety and panic attacks can be symptoms of low b12.
PAS can help you.
Bnf guidelines they can read online.
Your doctor should k ow about the effect of PPi's write down tour symptoms. Ask for another explanation of your symptoms??
Just keep going back. I had alot of anxiety at the start . Totally alien to me . Doctors repeatedly wanted me on antidepressants. Even A and E said I was having a panic attack.
Just sounds like you need more b12 . Of course I could be wrong as many causes .
Do you have a diet with lots of B12 rich food eg meat, fish, shellfish, dairy, eggs, foods fortified with B12?
If yes to B12 rich diet then B12 deficiency is less likely to be due to diet and more likely to be due to a gut absorption problem eg PA (Pernicious Anaemia), Coeliac disease, H Pylori infection and other gut conditions.
Has GP tested you for PA (Pernicious Anaemia) and Coeliac and other gut problems?
Do you have any neuro symptoms eg
tingling, numbness, pins and needles, burning sensations, insect crawling sensation, tinnitus, muscle twitches, muscle fasciculations, flickering eyelids, restless legs syndrome RLS, vertigo, migraine, clumsiness, dropping things, bumping into things, strange gait (unusual way of walking), word finding problems, balance issues, brainfog, memory problems, proprioception problems (problems with awareness of body in space) etc?
If yes to neuro symptoms I'm very surprised GP has suggested a spray as UK guidelines recommend injections.
1) UK recommended treatment pattern for B12 deficiency without neuro symptoms is ...
6 B12 loading jabs over 2 weeks followed by a jab every 2 or 3 months
2) UK recommended treatment pattern 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
"My question is why do I still feel rubbish, even though supplementing. "
I suspect you may not be getting enough B12.
"Could this all be related? The gp said it wasnt yesterday "
Short answer - yes.
All the symptoms you mention can be found on the symptoms lists below.
Thank you for you reply. I eat a varied diet rich in b12 foods. I was tested for coeliac which was neg, along with h pylori when I had my endoscopy late last year.
I do have several of the neuro symptoms you describe. Especially noted lately that I'm forgetful and struggle to get my words out. I did explain this to the gp but she is set on me waiting for another b12 test in month.
Are my b12 levels likely to go up with the spray supplement if it is a gut absorption issue?
They may go up enough for GP to assume that your low B12 level was due to diet which will make it harder for you to get B12 injections.
You say you are eating a balanced diet. It may be a good idea to write out a typical weekly diet, food and drinks for GP so GP can see you are eating a diet with plenty of B12 rich foods.
Has your GP got a list of all your symptoms especially every neurological symptom you have?
Have a look at links to lists of B12 deficiency symptoms in my other post.
GPs often look for symptoms of peripheral neuropathy in patients with B12 deficiency so mention any symptoms suggestive of peripheral neuropathy.
If you have neuro symptoms related to B12 deficiency you should be on treatment pattern below, whatever the cause of B12 deficiency. GP can find this info in their BNF book Chapter 9 Section 1.2
A B12 loading jab every other day for as long as symptoms continue to get better then a jab every 2 months.
Oral B12 supplements are unlikely to be enough to start healing in someone with neurological symptoms caused by B12 deficiency.
There is a window of opportunity to avoid permanent neurological damage in someone with B12 deficiency so vital that you get adequate treatment.
If you are elderly you may have to fight against age prejudice. I think too many things are put down to ageing when there could be a treatable cause of symptoms (eg b12 deficiency) in some cases.
Dementia
GPs are encouraged to look out for dementia signs in elderly patients but may be unaware that B12 deficiency can lead to dementia type symptoms.
Try to take a supportive person who has read about B12 deficiency/PA etc and who is willing to speak up on your behalf at appointments.
Unhappy with Treatment (UK info)?
Point 1 in the next link is about writing a letter to GP if you think you are under treated for B12 deficiency with neurological symptoms present.
If you think you are not being given the right level of treatment and your GP is unhelpful then your MP may be interested in your story.
Local Guidelines
Sadly some parts of the UK are using out of date local guidelines which can make it difficult for people to get a proper diagnosis of B12 deficiency.
Forum members from Gloucestershire have reported that guidelines in Gloucestershire are out of date and there are other UK areas with similar problems.
If you can, try to find a copy online of the local guidelines for your part of UK and compare them with guidelines in BNF, BSH and NICE CKS links in my other post.
Referrals
With neuro symptoms present, have you been referred to
1) a neurologist?
If you see a neurologist, ask them to check your proprioception sense.
Vital that tests to check proprioception are only done by a doctor at medical premises due to risk of loss of balance.
Two tests that help to do this are Romberg test and walking heel to toe with eyes closed. Problems with proprioception are associated with B12 deficiency.
If no tests are done with patient's eyes closed then unlikely that proprioception has been fully tested.
2) a haematologist?
NICE CKS link in my other post recommends that GPs seek advice from a haematologist for patients with b12 deficiency with neuro symptoms.
If GP won't refer you to a haematologist, you could ask them to contact a local haematologist by letter for advice.
Don't expect better treatment from a specialist, ignorance about B12 deficiency exists among specialists as well as GPs. I just hope you are lucky and get one who knows about B12.
Gastro specialist should be able to spot signs of gut damage from PA, Coeliac, H Pylori etc.
As you had an endoscopy recently, have you read the report/letter that specialist would have sent your GP?
It might be helpful to see if the report/letter mentioned any gastritis, inflammation of the gut.
Endoscopies don't always examine the whole of the gut. B12 is absorbed in part of the gut called the terminal ileum.
"I was tested for coeliac"
What tests for Coeliac did you have?
Coeliac can be diagnosed by blood tests and sometimes by a gut biopsy.
Sometimes blood tests for Coeliac are not reliable. If they did blood tests for Coeliac, they should have done at least two tests
1) tTG IgA (tissue transglutaminase IgA)
2) Total IgA
People can have a negative result in the tTG IgA test if they have IgA deficiency. Total IgA test checks who has IgA deficiency.
It's also possible to have a negative result in tTG igA test even if patient has coeliac disease, if patient was not eating enough gluten before blood was taken.
If you had blood tests for coeliac disease, were you told to eat plenty of gluten in more than one meal per day for several weeks before blood taken?
Tests for PA
Is there a family history of PA or other auto immune conditions and if there is, does your GP know about the family history?
Having auto immune conditions in the family increases the chances of developing one.
Have you looked at your medical records/test results to see if you've been tested for PA (Pernicious Anaemia)?
In UK it would usually be an Intrinsic Factor Antibody test (IFA).
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.
If you had an IFA test for PA and it was negative I hope your GP knows it is possible to have Antibody Negative PA. See flowchart link in my other post.
If you suspect you might have PA or there is a family history of PA, I recommend you think about joining and ringing the PAS (Pernicious Anaemia Society).
They can offer support and pass on useful information about PA.
"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. See BNF links in my other post.
"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".
I also plan to read Vitamin B12 deficiency in Clinical Practice" (subtitle "Doctor, you gave me my life back!" by Dr Joseph Alexander "Chandy" Kayyalackakom and Hugo Minney PhD
Wow thank you for all the information I will start reading through it all.
I'm 32 years old. The report from the endoscopy just referred to a sliding hiatus hernia, they did not go any further than my stomach. No reference to gastritis which was surprising as I suffer terribly from acid reflux even on PPI's.
I just had the tTG IgA blood test which was negative. My mum has coeliac disease, so I was half expecting it to be positive. I dont avoid gluten/wheat in my diet as have two pasta loving children!
No one in the family has any auto immune disorders. Also my instrinsic factor was never checked. Is this something that I could ask for now even being on supplements? Or would it affect the result?
I have another appt with the gp in 2 weeks for follow up so it would be great to go in with some better insite and ammo! Thanks so much for helping me.
Nitrous Oxide is in "gas and air mix" used as pain relief in labour ans soemtimes as part of anaesthesia for operations.
I have read articles suggesting that health professionals exposed to nitrous oxide eg midwives, may be at risk of B12 deficiency.
Parasites
Fish tapeworm infection can lead to B12 deficiency. Do you ever eat raw or uncooked fish eg in sushi, smoked salmon etc?
One potential sign of fish tapeworm infection is an increase in eosinophils, a type of white blood cell WBC. Eosinophil result can be found with Full Blood Count results.
There are other parasites that are associated with B12 deficiency eg other tapeworms, also Giardia Lamblia etc. Search online for "parasites B12 deficiency" for more info.
PPI drugs
I found articles that linked taking PPI drugs with B12 deficiency.
" just had the tTG IgA blood test which was negative. My mum has coeliac disease"
There's still a possibility that you could have Coeliac disease. If you are IgA deficient then your body will not make the antibodies to gluten that tTG IgA test looks for .
Perhaps you could ask GP for a Total IgA test and if this shows you have IgA deficiency maybe they would check for Coeliac again. If you are IgA deficient, then there are other Coeliac blood tests that can be done eg
1)Immunoglobulin G (IgG) EMA
2)IgG deamidated gliadin peptide (DGP)
3) IgG tTG
Had you been eating lots of gluten in more than one meal per day for at least 6 weeks before blood was taken for tTG IgA test?
If not, your result for tTG IgA test may not be reliable ...you may have had a negative result because there weren't enough antibodies to gluten circulating in your blood to register a positive result.
I'd like to say I'm shocked but sadly I'm not...the lack of knowledge about B12 deficiency and Pernicious Anaemia and other causes of B12 deficiency among some medical professionals amazes me.
The fact that your mother has an auto immune condition (Coeliac) increases your chances of developing one. Pernicious Anaemia (PA) is an auto immune condition.
Does your GP know your mum has Coeliac?
If you think PA is a possibility, I recommend joining and talking directly to PAS as they can suggest info to pass to GPs. Probably best to speak to PAS before your next GP appointment.
Vital that any co-existing B12 deficiency is treated if patient is receiving folate treatment.
If person with both B12 and folate deficiency has only folate treatment this may mask the effects of B12 deficiency on the red blood cells but the neurological damage from B12 deficiency may continue undetected.
See Management section in above link about Folate Deficiency.
See also BSH Cobalamin and Folate Guidelines link in one of my other posts on this thread for more info.
"my instrinsic factor was never checked. Is this something that I could ask for now even being on supplements"
You would need to be off B12 supplements for a while as there is a possibility of a false positive result if blood taken close to a B12 injection or B12 supplements.
See section on "Anything else you should know" in Common Questions section in next link about Intrinsic Factor Antibody test.
Just remember that the IFA test is not particularly reliable, many people with PA get a negative result. Martyn Hooper, the chair of PAS, tested negative more than once on IFA test before finally testing positive.
If GP is reluctant to test you, it is possible to get some blood tests done privately.
NHS sometimes won't accept results from private blood tests.
"would be great to go in with some better insite and ammo! "
Might be worth putting concerns in a brief, polite letter to GP . If it reaches GP before next appointment it gives GP time to do their own research.
Letters could contain symptoms list, test results, relevant family and personal medical history, extracts from UK B12 documents, requests for referrals etc.
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.
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Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
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