Hi from UK. Trying to be brief. I was really poorly for about a year from Sept '17 with a plethora of 'unexplained' symptons (which I now know all fit under pretfy much every possibility for B12D). Was not able to work & really debilitated by it all physically & mentally/emotionally. I had a couple of ultrasounds, several blood tests checking everything, and even a CT scan on my torso. All 'ok'. I did my own research, of course, and had concluded B12D seemed the most likely thing, with a few bits better by now, but severe fatigue, near-daily headache, scrambled brain, joint & muscle pain & weakness, "IBS", and others still ruining my life. Then by chance discovered my older brother had just been found to be B12D (i now know his B12 was 87).
Returned to Dr and didn't take the "I think I have" route, but told her I was still suffering. She repeated blood tests and, to my relief, I got a call to go for 5 loading jabs of B12.
My B12 was 113. My intrinsic factor test was negative apparently. On asking, my B12 6 months prior, when still very ill and before being sent for CT scan, was at 190. This had cone back 'normal ' from lab so Dr hadn't looked at this.
I was excited - jabs in mid-Sept '18, and after 3rd I began feeling a little improvement - a kind of rewiring in my brain. After all 5 I felt slightly better again, my all over the place digestive system felt better after a few days, like how I think normal might be! I had a bit more energy and felt more mobile. Was told re-test in 6 months.
Feeling better lasted 10-14 days and then I had a weekend of sickness (bug from school i think). Since then I have gradually gone downhill again -there are some other things I would like to ask about but will save for another post!
So, went back & asked for another blood test which they said could only be after 3 months. Had on Mon & result just back as 'ok', but asked (receptionist) and my B12 is now at 273. I think this seems low because obvs had huge doses just in Sept? Am I right??
I am going to speak to Dr tomorrow, it may be that she says she considers it low too and to have more jabs, but I would just like to be ready with right things to ask about/say!
Any advice will be helpful, thanks in advance!
Erry
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eclilley
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You will be able to find evidence to show to your doctor that the Intrinsic Factor Antibodies Test is extremely unreliable , and just because you tested negative does not mean that you do not have P.A. Your symptoms are the most important clues to your health problems , and need to be addressed ASAP .The IBS symptoms are also indicative of low/no stomach acid(Hypochlorhydria/Achlorhydria) which can be caused by PA. Low stomach acid upsets the gut flora , causing bloating and stomach pain . Acidic drinks and pro with prebiotic capsules can help or fermented foods like sauerkraut and Kimchi .
You know that the B12 injections had a positive influence on your symptoms . You now have to try to get B12 injections regularly enough to keep your symptoms at bay . Injections are very cheap , so it does not cause great expense to the NHS . ( my self -injection costs me just over £1.00 )Failing this , you may need to self-inject , which is what many PA patients have to do ( I have to ) if they can’t get enough injections .Also mention to your doctor that your brother has very low B12 . PA often runs in families . Also it would be a good idea to supplement with a folic acid tablet -say 400 mcg . B9 works with B12 . And eat vegs and fruit high in folate .
Make a list of your symptoms and present this to your doctor and ask him to treat you according to your symptoms and (perhaps) even start you on loading doses "until there is no further improvement" according to the B.N.F guidelines below:
Prophylaxis of macrocytic anaemias associated with vitamin B12 deficiency
By intramuscular injection
For Adult
1 mg every 2–3 months.
Pernicious anaemia and other macrocytic anaemias without neurological involvement
By intramuscular injection
For Adult
Initially 1 mg 3 times a week for 2 weeks, then 1 mg every 2–3 months.
Pernicious anaemia and other macrocytic anaemias with neurological involvement
By intramuscular injection
For Adult
Initially 1 mg once daily on alternate days until no further improvement, then 1 mg every 2 months.
Point out the second highlighted paragraph as applicable to you.
As wedgewood says above it is also important that your Folate level is monitored as this is essential to process the B12.
There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.
Symptoms of a folate deficiency can include:
symptoms related to anaemia
reduced sense of taste
diarrhoea
numbness and tingling in the feet and hands
muscle weakness
depression
Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body.
I am not a medically trained person but I've had Pernicious Anaemia (one of many causes of B12 deficiency) for more than 46 years.
In summary IFA isn't very sensitive and gives false negatives 40-60% of the time. It is quite specific, ie doesn't give false positives very rarely. This means that a positive is good at confirming you have PA but a negative is a long way from ruling out PA.
It would be useful to know where you are based as protocols for treating B12 absorption vary from country to country.
It sounds as if you are probably US based but would be useful to know just because of the variation.
Your tests show that you have an absorption problem and PA is the most likely cause.
There is a lot of variation in the way individuals respond to PA meaning that some people do need B12 much more frequently than others - and it does sound as if you are probably at the week-fortnightly end of things.
Unfortunately serum B12 isn't a very good test for monitoring whether a B12 absorption problem is being treated adequately and the BCSH guidelines mentioned above actually state that testing after loading doses isn't necessary. Many people need much higher B12 levels post loading shots - even way off the top of the normal range - to function properly - so basically loading shots mean that something fundamental changes in the human body and the normal range for people who haven't had loading shots doesn't apply.
Metabolism of B12 is much more complex than just absorbing B12 from your food.
Not sure if it will help but you could try suggesting that your doctor takes a look at the area on the PAS website at the area that is specifically aimed at helping medical practitioners improve the diagnosis and treatment of PA and B12 absorption issues.
thanks beginner1 - was thrown by the reference to doctor rather than GP and missed the statement at the start.
eclilley - suggest you write to your GP asking them to treat you in accordance with the national guidelines/best practice as updated for latest research - they can access them through the BNF.
It is extremely irritating that local guidelines are often so out of date.
If you don't get anywhere with writing (copy to practice administrator) then suggest you contact (and join) the PAS and ask if they can follow up with your GP on your behalf. You could also point them to the area of the PAS website specifically aimed at helping medical practitioners improve standards of diagnosis and treatment of PA and other B12 absorption problems
Do any of above risk factors apply to you and if yes does GP know about them?
Have you been asked questions about/tested for
1) Diet?
Vegan/vegetarian diets and excess alcohol intake can be possible risk factors in developing B12 deficiency
2) PA (Pernicious Anaemia)?
In UK, this would be an Intrinsic factor Antibody test. IFA test is not always reliable and it is still possible to have PA even if IFA result is negative.
"My intrinsic factor test was negative apparently."
Your GP may not be aware that it is possible to have Antibody Negative Pernicious Anaemia. See BSH flowchart link at top of my post and check GP has followed diagnostic process for PA and Antibody Negative PA.
There is more about Antibody Negative PA in Martyn Hooper's book listed below.
3) Coeliac disease?
NICE guidelines Coeliac disease recommend anyone with unexplained B12, folate or iron deficiencies should be tested for Coeliac disease.
Fish tapeworm can lead to severe B12 deficiency. One potential sign of fish tapeworm infection is an increase in eosinophils ( a type of white blood cell). Eosinophil results can be seen on Full Blood Count test results.
My personal preference was to write short, polite letters when I wanted to raise an issue with GP. In UK, letters to GPs are supposed to be filed with a patient's medical records.
In my opinion letters to GP are less likely to be ignored than something said directly to GP which may get forgotten or not recorded in notes.
"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 is up to date with most UK b12 guidelines.
"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".
If finance is an issue then local library service may have copies.
If you think PA is a possibility then worth joining and talking to PAS.
I note you have a family member with low B12. PA can run in families ( so can other auto-immune conditions such as Coeliac disease).
PAS (Pernicious Anaemia Society)
Based in Wales, UK. Offers support and info about PA.
Do you have any neuro symptoms eg migraine, tinnitus, tremors, restless legs, tingling, pins and needles, numbness, memory problems, balance issues, confusion, word finding difficulties etc?
If yes to neuro symptoms, have you given a list of all neuro symptoms to GP and have you been referred to
1) a neurologist?
2) a haematologist?
NICE CKS link at top of my post indicates that GPs should seek advice from haematologist for patients with B12 deficiency with neuro symptoms
I hope your GP is aware of the potential neurological consequences of untreated or under treated B12 deficiency.
If you have gastro symptoms, have you been referred to a gastro-enterologist?
A gastro specialist should be able to spot signs of gut damage from PA, Coeliac H pylori etc.
I was pro-active and sent short polite letters to GP requesting relevant referrals. I included supportive evidence in letters eg symptoms, test results, family history, extracts from UK documents etc.
GPs do not have to agree to a referral request.
I am not medically trained. More B12 info in pinned posts on this forum.
My experience has been that some GPs and specialists lack understanding of B12 deficiency so be well prepared for any appointments and do some B12 homework in case doctor has not done theirs.
I saw multiple neurologists and other specialists and only one neuro raised the possibility of B12 deficiency
Best piece of advice I ever had was to always get copies of all my test results.
I learnt to do this after being told everything was okay/normal and then finding abnormal/borderline results when I got copies.
Thank you all so much for your really helpful answers. Apologies for posting just one reply to you all for now, and if it is rambling and unnecessary, I am not finding it easy to concentrate and use my computer again Need to try and have a few more things jotted down before a call from GP -prob a short call as I am going to make an appt. to have a proper discussion!
Spot on beginner1, I am indeed in Gloucestershire (well, my GP practice is, I am near the border just in Warks & almost in Oxfds!). How very frustrating that I have one of the short straws in terms of how the County tackles things for B12/PA.
I haven't really had what I could call a 'proper' conversation at all with GP about my results, the deficiency, what it means, causes, the way forward, etc. Initially all started with a really bad 'migraine' that would not go with my usual tablets for nearly 10 days. Was treated for it being a kidney infection due to some of the odd symptoms with this headache & white blood cells when my urine was dipped by GP. Had 2 courses of different antibiotics, but things continued, further symptoms came in and overall I worsened. Blood tests done, 2 x ultrasounds for kidney stones and then gall stones, various things considered & ruled out, put on Omeprazole (i stopped after 3 weeks), CT scan, poss all emotional stress (which I had had & lot of stuff not dealt with), suggestions of trying exercise & counselling, going for physio & chiro myself to see if some of the back pain could be alleviated, taking myself to the GUI clinic to check out all that, and eventually basically self-diagnosing B12D, & then going back to get bloods done again..... At the end I just got a call from receptionist asking to 'book in for 5 x B12 jabs as it was quite low'.
I asked nurse at jab 1 and she told me it was 113(or was it 130?), & had been 190 in Dec '17. She said the IFA was negative. Told by nurse that I should come back in 6 months for bloods again to see if dropped, and if it had then I'd be given 3 monthly.
I have read quite a bit of info about B12D & PA over the last 6 months, so already had the impression that this may well not be the end of the story!!!
But I waited as wanted to see what would happen after this initial treatment and see if things improved.
However, I went back in late Nov as felt I was really on the slide down again (& now worse), the Dr wasn't really interested in discussing symptoms or anything to do with it at that appt, said I had to wait til 3 months had passed from the loading shots for an 'early' blood test, and that was that really. So, having had my 'early' blood test done, I happened to be in surgery with my daughter last week & asked recep could they tell me the B12 = 273, which I am pretty sure is classed as a 'moderate deficiency' in itself according to some things I have read, let alone if the patient has huge quantities injected 3 months before?!
Fatigue and overall exhaustion, feeling immobile and aches and pain in joints, fogginess and lack of brain engagement and feeling 'I cant', "IBS" and headaches are the worst things back again so far.
Yes, I have some neurological symptoms coming back, and had a number before being diagnosed/loading. Migraines - a funny one for me. I have had really badly debilitating hormonal migraines since I was about 20. Whilst feeling really poorly from 2017 - 18 had far less of these, but had a kind of low-level pressure headache more often than not which was really horrible. As soon as had the B12 jabs I got the hormonal migraine back from end Sept to Xmas, and fewer daily headaches. Now, feeling more 'B12D/PA' again, 2 wks agao did not get migraine with cycle but have had the low-level headaches back again.
So Q: does B12 interplay with endocrine system and kind of kickstart your hormones or something?!?
Yes, I had, and have back, gastro symptoms badly. They were worse c. 12 months ago, but certainly I could be described as having IBS all the time really. I was amazed how quickly after the 5 x jabs I felt that maybe this was how other people's bowels behaved!?!?!
As I say, no actual discussion with GP, so no referrals of any kind.
(As a slight defence of them, it is the same practice, but the GP I went to see to say I was still not right & get bloods repeated in July, which then found B12D, is not my 'usual' one who I had been seeing throughout the 'unexplained' year of symptoms prior. But this one did find my brother's B12D, and I swapped partly due to that and partly because I had lost faith in previous one a bit and felt she was fed up of me still claiming to be ill....! I'm thinking maybe I should change to another practice in Warwks or Oxfds!!)
Loads of great info and help from you all. Thank you so much for all of it and all the links and advice - I have a lot of reading to do! I think letters are a good idea, I will see how this first proper discussion goes and take it from there.
I just want to be able to get on with my life. I have not been able to work (properly) for nearly last 18 months, I am a now-single Mum of a 9 yr old, (though am lucky to have nearby family and a mostly decent ex!), and mostly responsible for looking after my Mother too. I was already at a bit of a crossroads and thinking about career change and working more, having been mostly self-employed for nearly 10 years. This has consumed things for a year and things have been really hard, so I am very pleased to at least have a (partial) diagnosis, I can see it's just getting the right treatment and management is the next stage to contend with before I can gradually head towards normal.
You do not need to have a confirmed PA diagnosis to join PAS. It can be very difficult to get a PA diagnosis. There are stories about this on Martyn Hooper's PA blog.
Have you asked GP, if it is possible that you might have Antibody Negative Pernicious Anaemia?
If they look blankly at you, you could show them the BSH flowchart (link in post above) from BSH Cobalamin guidelines or Martyn Hooper's book "What You Need to Know About Pernicious Anaemia and B12 Deficiency " which mentions Antibody Negative Pernicious Anaemia in one of the chapters.
PAS website has a section for health professionals which GP might find helpful. Health professionals can join PAS for free.
If you join PAS, they have a helpful document in library section on website " An Update for Medical Professionals: Diagnosis and Treatment " which some forum members have passed to their GPs.
Have you checked your medical records to see if GP tested you for Coeliac disease?
Some UK GP surgeries have online access to a summary of records/results. Details on GP surgery website. This is just a summary and may not have all info wanted. May be worth asking for access to paper records.
If yes to Coeliac tests, which tests did you have?
NICE guidelines Coeliac Disease recommends two tests
1) tTG IgA
2) Total IgA
Did you have both tests?
tTG IgA test checks for a particular type of antibody to gluten.
Total IgA test checks which patients have IgA deficiency.
Patients with IgA deficiency do not make the antibodies to gluten that the tTG IgA test checks for. Their results on tTG IgA test will be negative even if they have Coeliac disease. Patients with IgA deficiency need different tests for Coeliac disease.
Thyroid Problems
There are quite a few on this forum who also have thyroid problems.
In UK, GPs often only test TSH which won't give a full picture of thyroid function. Might be worth putting any thyroid results on Thyroid UK forum on HU.
"As I say, no actual discussion with GP, so no referrals of any kind."
There's nothing to stop you politely requesting a relevant referral. I preferred to put referral requests in a short letter to GP.
Any chance your brother could go with you? This might encourage GP to consider causes of B12 deficiency that can run in families eg PA/Coeliac plus others.
"some neurological symptoms coming back, and had a number before being diagnosed/loading"
Recommended UK B12 treatment for B12 deficiency without neuro symptoms is
1) 6 B12 loading jabs over 2 weeks followed by a jab every 2 or 3 months.
Recommended UK B12 treatment for B12 deficiency WITH neuro symptoms is
2) A B12 loading jab every other day for as long as symptoms continue to get better (could mean loading jabs every other day for weeks even months)
then a B12 jab every 2 months
See BNF, NICE CKS, BSH links for more info on UK B12 treatment
After all 5 I felt slightly better .....as told re-test in 6 months.
If you only had 5 loading jabs with no more jabs afterwards then my understanding (I'm not medically trained) is that you have not had the pattern of treatment recommended in UK guidelines.
As you have neuro symptoms, my understanding is that you should be on second pattern of treatment outlined above. BSH Cobalamin guidelines indicates that this pattern of treatment applies, whatever the cause of the B12 deficiency, if neuro symptoms are present.
In a nutshell
low B12 diagnosed
neuro symptoms present
every other day B12 jabs recommended in national guidelines
I suspect your area of UK is using outdated local B12 guidelines rather than more up to date national ones.
BSH Cobalamin guidelines indicate that testing B12 levels after treatment has started is irrelevant.
There is a useful summary of b12 documents in third pinned post on this forum which mentions retesting after starting treatment.
If you are not getting recommended NHS treatment, might be worth contacting your local MP.
You may have to fight really hard to get appropriate B12 treatment so worth seeking support.
I think your best bet is to talk to PAS. Contact details in my post above.
PAS can sometimes intervene directly on behalf of members.
If you find GP unhelpful then might be worth getting a free second opinion from HDA patient care trust. They use a network of specialists around UK. See link in my post above.
I would add a caution that private consultations are no guarantee of better treatment. Sadly ignorance about B12 deficiency exists in both private sector and NHS .
I lived in London area when they discovered I low b12 nhs had literally changed goal posts so no b12 then moved to Suffolk still no better doc even refused b12 blood test folic only so b12 is often missed I also have intrinsic factor much of my bowel removed also under active thyroid what more I have have to get b12 I don’t know.one of my doctors said 20yrs ago I would had injections so now I buy it give to myself but I don’t know when or how much.had a few injections but not notice difference as yet..I really hoped I be feeling better within days but I getting no medical help so I in the dark.
It sound like you will be treated better than me,very unfair system as I thought nhs guide lines were same every where.
Good luck hope all go well and get the treatment you rightly deserve
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Need to try and have a few more things jotted down before a call from GP -prob a short call as I am going to make an appt. to have a proper discussion!
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