Had a B12 deficiency was told it was ... - Pernicious Anaemi...

Pernicious Anaemia Society

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Had a B12 deficiency was told it was sorted but I feel like it's come back.

Samsmi profile image
Samsmi

Hi,

So about 3 years ago (almost 4 I believe) I started getting really bad dizzy spells, one even scared my mum so much she called a paramedic out to see me cause I was so dizzy that I couldn't move for 3 days. I had test at the doctors so many times until they finally decided to check my vitamin levels after hearing of some of my other problems I was having (vision going funny but perfect eyesight, irregular bowel movements, constant bloating, pins and needles in fingers and toes, fatigue, slight confusion especially while at college, joint and muscle pain)

The results came back as very low vitamin B12 & D (not that uncommon cause I live in the UK) as well as slight iron. I was given supplements for the B12 & D for 3 months then brought my own for a futher 2 months and I felt like everyting was good but recently I feel as if my symptoms are back again.

Some of my symptoms I know can be caused by the depo contraceptive injection which I'm on but I feel as if thought everything's been slowly going back to how it was instead of it just being because of the depo.

Can a B12 deficiency randomly come back? Lately my family have been asking me if I'm okay cause I'm a lot paler than usual and because I've got very fair skin and natural really light blonde hair, I've always been super pale.

Sorry it went on for so long and id be grateful for the help :) I just want to know If going back to the doctors would be worth it?

Thanks

13 Replies

Hi,

My experiences of being ill for many years have taught me two things

1) B12 deficiency is not as well understood as it could be amongst some doctors, so it pays, in my opinion, to do some B12 homework.

2) I always get copies of all my blood test results. I learnt to do this after being told everything was normal then finding abnormal and borderline results on the copies.

Access to Medical records (England)

nhs.uk/NHSEngland/thenhs/re...

england.nhs.uk/contact-us/p...

nhs.uk/chq/Pages/2635.aspx?...

"Can a B12 deficiency randomly come back?"

Link about what to do next if B12 deficiency is suspected

b12deficiency.info/what-to-...

Were you ever tested for PA (Pernicious Anaemia)? Did you have an IFA Intrinsic Factor Antibody test? PA requires lifelong treatment with B12.

IFA test can help to diagnose PA but test is not always reliable and it is still possible to have PA even if IFA result is negative or normal range.

At the time your low B12 was found, what did the doctors think was causing it?

Were you tested for Coeliac disease?

If you're in UK, did you have both recommended first line tests, tTG IgA and total IgA?

People with IgA deficiency will need alternative tests for Coeliac disease.

coeliac.org.uk/coeliac-dise...

NICE guidelines Coeliac disease (2015 version) specifies that people with unexplained B12, folate or iron deficiency should be tested for Coeliac disease.

nice.org.uk/guidance/ng20/c...

Were you eating a diet rich in B12 eg meat, fish, shellfish, dairy and eggs when low B12 was found?

Have you had any surgery involving nitrous oxide recently?

gov.uk/drug-safety-update/n...

Have you ever been tested for H Pylori infection as this can lead to B12 deficiency?

Risk factors for PA and B12 deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

b12deficiency.info/who-is-a...

Symptoms of B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

PAS (Pernicious Anaemia Society) website

If you think PA is a possibility then may be worth joining and talking to PAS.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769 717

B12 Deficiency Info website

b12deficiency.info/

B12d.org website

b12d.org/

B12 books I found useful

"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book is up to date with 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 book about B12 deficiency with lots of case studies.

UK b12 articles/documents

I'd recommend reading all of them if in UK.

BMJ B12 article

bmj.com/content/349/bmj.g5226

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

BNF British National Formulary Chapter 9 Section 1.2

bnf.nice.org.uk/drug/hydrox...

Link about writing letters to GP about B12 deficiency. I found lots of useful info in this link.

b12deficiency.info/b12-writ...

More B12 info in pinned posts on this forum including a useful summary of B12 documents in third pinned post.

Blood test links

B12 testing

b12deficiency.info/b12-test...

Have you got recent results for B12, folate, ferritin and full blood count?

Macrocytosis

patient.info/doctor/macrocy...

Full Blood Count

labtestsonline.org.uk/under...

Folate Deficiency

patient.info/doctor/folate-...

Blood film

labtestsonline.org.uk/tests...

patient.info/doctor/periphe...

Iron tests

labtestsonline.org.uk/tests...

I am not medically trained.

Samsmi profile image
Samsmi in reply to Sleepybunny

I am seafood intolerant as well as lactose intolerant. I've been intolerant to all seafood since the age of 8 and haven't eaten any since (also don't like the smell of it) and I became lactose intolerant around the same time as my b12 was low but it never went away.

I never found the reason, my doctors are actually quite shit. One doctors took me off all of my medication without checking any of it just because my dad was a drug addict. They're the reason it's now super hard for me to get a doctors appointment and to be tested for anything because they think I'm lying.

Gambit62 profile image
Gambit62Administrator

Do you know what caused the original B12 deficiency? and can you remember what was the strength of the tablets you were given.

B12 is stored in your liver in quite good quantities which means it tends to take a very long time for a deficiency to develop.

B12 is only found in animal products or foods that have been fortified with B12 - so if you don't eat meat/fish/dairy/eggs then you will develop a dietary deficiency - but this is likely to take a long time to develop. This can be treated with a dose of B12 of around 50mcg then going on to doses of upto 10mcg on a daily basis.

However, it sounds like your original problem may have been an absorption problem - particularly as you also had iron deficiency.

The mechanism that your body uses to release the B12 stores in your liver is the same one as you use to absorb B12 in your food - so if you have an absorption problem the storage mechanism no longer works properly and you will become deficient again. The most common absorption problem is PA but, unfortunately the test for this (IFA) isn't as sensitive as it could be so it gives false negatives 40-60% of the time. It may be that it was done the first time you had problems, came back negative, so the erroneous decision was made that the problem wasn't an absorption problem.

The contraceptive you are using seems to contain progestin - this can interfere with the metabolism of B12 in some people so it may be that that isn't helping things.

Samsmi profile image
Samsmi in reply to Gambit62

My doctors didn't ever explain anything about PA or anything thing else. The anemia was also the last thing they tested because I described my symptoms as "it's like I've become intolerant to everything I eat" cause it was true. I spent most of my life on the toilet when I was at its worst.

After i was given my tablets/supplements, I lost half stone in body weight simply because I was that bloated all the time but I coudlnt never tell that I was bloated because I don't remember when it started but now I can tell that I'm starting to be bloated all the time again.

I said in my comment the the one above that I don't eat any seafood as I am seafood intolerant and I am also now lactose intolerant but that doesn't stop me from eating dairy products. I've grown up from the age of 8 not eating sea foods so I'm use to that but not use to not being allowed to eat dairy stuff so I tend to eat it any way and regret it later.

Gambit62 profile image
Gambit62Administrator in reply to Samsmi

I think you need to read up a bit on B12 absorption problems as your GP may well not know much so you need to understand it for your self so you know what questions to ask and where to refer them on to.

It would be useful to know what country you live in as treatment varies from country to country.

You didn't say if you eat meat. I'm assuming that you do - which would make it highly unlikely that what is going on is dietary.

The bloating may well be a sign that you have low stomach acidity - which could well be related to PA.

You can find symptoms of PA/B12 deficiency here and lots of information on B12 - though you will need to join to access a lot of it.

pernicious-anaemia-society....

Samsmi profile image
Samsmi in reply to Gambit62

Yeah I eat meat, mainly chicken though.

I live in the UK but my local doctors you have to have a phone call appointment before you can actually see one. They made a new rule that if they don't think your symptoms are bad enough you don't be seen so it's really hard to even get to see one. You also have to wait around a week to get a phone call.

I'll defiantly research a little more before I get a phone call and hopefully they'll see me

Gambit62 profile image
Gambit62Administrator in reply to Samsmi

you may want to pay particular attention to the BCSH guidelines on diagnosis and treatment of cobalamin and folate disorders. Your GP can access these through the BNF

they can also be accessed here

onlinelibrary.wiley.com/doi...

Astridnova profile image
Astridnova in reply to Samsmi

I live in Australia. I am amazed at the problems people in the UK have with their doctors. It seems incredible to me that they actually expect to interview you on the phone and then can tell you that you are not sick enough. It is shameful.

clivealive profile image
clivealiveForum Support

Hi Samsmi did you ever find out what caused the Vitamin B12 deficiency in the first place because if not, and you have continued with the same lifestyle, diet, medications etc you were on before then it is quite likely that you will have become deficient again.

It may be that you have an underlying cause such as an absorption problem with your stomach and the "quick fix" supplements for the B12 & D for 3 months then brought my own for a further 2 months restored your levels back to normal and now, if you haven't remedied the cause, you've become deficient again.

I think you do need to go back to your doctor and as Sleepybunny comments ask to have yourself tested for P.A. as well as your serum B12 and Folate and D levels.

I am not a medically trained person but have had P.A. (a form of B12 deficiency) for 46 years.

I wish you well.

Hi again,

" if they don't think your symptoms are bad enough you don't be seen so it's really hard to even get to see one. "

Might be worth writing a polite, short letter which includes symptom list, diet info, maybe info from UK b12 documents, blood test results.

Link about writing letters to GPs about B12 deficiency.

I'd suggest looking at this link, even if you don't want to write a letter, as there is some very helpful info.

b12deficiency.info/b12-writ...

Point 1 in letter link is about under treatment of B12 deficiency with neuro symptoms.

Point 5 in letter link is about having symptoms of B12 deficiency with a b12 result that is within the normal range.

Point 3 is about what to do if doctors are refusing to order tests to check for B12 deficiency.

Writing a letter before an appointment means a patient can take their time, rather than a short telephone call or short appt at surgery. GPs may ask a patient to come in for an appt if a letter shows a person could have serious problems.

Do you have any neurological symptoms eg tingling, pins and needles, tremors, tinnitus, memory problems, balance problems plus others?

Dizziness would usually be considered a neurological symptom.

Some people on forum have pointed out to their doctors that untreated or under treated B12 deficiency can lead to permanent neurological damage.

PAS news item on Neurological Consequences of PA

pernicious-anaemia-society....

Local MP

Might be worth talking to local MP if it is difficult to get appts in your area.

parliament.uk/mps-lords-and...

This flowchart

stichtingb12tekort.nl/weten...

makes it clear that in UK, people who are symptomatic for B12 deficiency should have an Intrinsic Factor Antibody test and start initial B12 treatment. It also outlines when Pernicious Anaemia and Antibody Negative Pernicious Anaemia can be diagnosed in UK.

Some UK doctors may not have seen the flowchart or read the BSH Cobalamin and Folate Guidelines

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

Sounds like you may have B12 absorbtion problems...not very easy to diagnose apart from standard IFA blood test which is not 100% accurate.

B12 deficiency may return if you stop treatment and you may be suffering from PA and need injections for life.

You may need to go back on B12 and Vit D.

Get tested for Folate and Iron also.

If your problems went away with B12 and Vit D previously then it sounds quite obvious that is the case again.

It’s usually B12, Vit D, Iron and folate so get blood test done again.

I have bloating issues which are only now much better with B12 injections. I was also low on Folate and Vit D.

B12 injections help greatly with bloating issues and IBS type symptoms but most people don’t know.

If your doc is refusing B12 injections just self inject. B12 ampules are easy to purchase, cheap and effective.

I inject every 2 weeks as symptoms start to return in 3rd week. Since self injecting I haven’t had much problems and can carry on with daily activities which was impossible without the injections.

All your symptoms seem to be pointing out to low B12 issues.

B12 also helps greatly with vision problems.

Get your blood tested as soon as possible and get a print out of your results and post it on here and you’ll get further help and go from there.

See what your doc says about your results and what treatment you may need...if he’s not helpful you’ll get help here on this site.

Best wishes.

Samsmi profile image
Samsmi in reply to Ryaan

The time I was tested they said that my iron was low too but never gave me tablets for that just for the B12 and D. I had another blood test not long ago but cause the levels didn't drop much they said I didn't need anything and that I would be fine.

My dizzy spells are also consistent. I've been going dizzy for 4 years and my doctors keeps telling me it's a 2 week virous and it will go soon.

I'm tempted to change doctors surgery if I'm honest

You need tablets for Iron if it’s low . Take low dose Iron as too much is no good, take daily recommended dose...but why didn’t your doc give you I don’t understand....you need to ask him.

Levels of what didn’t drop....B12 ?

How long after you stopped taking B12 did you have the blood test ?

Do you have any other symptoms of low B12 ?

If you think it’s not B12 your dizziness can be treated by taking medication for Vertigo.

The doctor red to treat your symptoms not looking at your B12 levels.

All depends on how long you been taking B12, how low it was when you started to supplement B12 and how high your levels got and how much your symptoms (if any other than Vertigo) improved or went away....Also what your levels are now.

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