Please help a confused bean - Pernicious Anaemi...

Pernicious Anaemia Society

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Please help a confused bean

TheSheriffofCardiff profile image

Hi,

So I've been experiencing symptoms of what I think is b12 deficiency but I haven't had it confirmed yet.

I'd been progressively getting more run down this last year and felt myself getting more anxious. I was vegan for this year just gone until recently, I've always had a bad lactose intolerance and been on and off veggie most my life. Until recently I didn't really know anything about b12 and I had never taken supplements.

In September I got the flu and my world turned upside down.

I suddenly got severe anxiety, brain fog and confusion. Everything felt alien to me, like I'm living in a dream. I now get breathe less and weak, and I heart palpitations just from the slightest activity. I look pale and I've lost my appetite. I get pins and needles and muscle ache in my arms and legs and my hair is starting to go gray and fall out (I'm 23 so it's a bit early ahaha). My tinnitus has gotten worse and i feel very dizzy most of the time. Most of all I am just extremely tired, I sleep a lot and i struggle to wake up. And its not long before I need to sleep again, but often have trouble actually dropping off to sleep, something Ive put down to the heart palpitations.

I started taking 1000ung b12 supplements a month ago and the cognative symptoms got a lot better. However, I've now paid for a private Active b12 test because my doctors are really dragging their feet (I think they think I'm a hypochondriac). My test came back at 70.8 pmol/l which it said is in the normal range.

Does anyone know if the supplements I'm taking could've affected the test? Or am I barking up the wrong tree and this isn't b12 at all.

11 Replies

hi i was feeling the same being older put it down to age , At first ive got low vitamin d levels as well ,seen another Dr she low at my blood tests ,ordered another came back as vitamin b12 reading low.

Worth asking for blood test to check as ide never heard of it

good luck and the test will tell you or not it horrible feeling crap best wishes

Hello Mr Bean

That certainly sounds like it could be B12. That figure seems very low, do you know the range it should be in.

To put it simply, most of your symptoms sound like B12, Iron, Folate and Vitamin D either low or deficient.

I would first get a blood test for these and get a copy of the results and either post on here or look at the range on the printout so you know what the problem is.

Then take the next step.

That’s the easiest way.

Am not a great expert on B12 but if you took B12 supplements for a month before the test it would have affected your blood test result. Can you post the range of the active B12 test as well as result. I would ask your doc for a full blood count test - get him to check your iron too & a thyroid panel test would be a good idea as well as your symptoms could be indicative of an underactive thyroid or anemia.

Hi,

"Does anyone know if the supplements I'm taking could've affected the test?"

It's possible, see links below.

b12deficiency.info/b12-test...

active-b12.com/frequently-a...

The symptoms you have listed all appear on one or more of the lists below.

Symptoms of B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

Have you given your GP a list of all your symptoms especially any neurological symptoms?

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

GPs are likely to assume that your symptoms are due to your diet as being vegan or vegetarian can be a risk factor for developing B12 deficiency. However it is possible to have more than one cause of b12 deficiency at the same time eg diet and an absorption problem in gut.

I suggest writing out a week's typical diet; food and drinks for GP to look at.

In UK, B12 deficiency due to diet is often treated with low dose B12 tablets.

You have described neurological symptoms eg tingling , tinnitus, pins and needles.

Don't let your GP fob you off with low dose B12 tablets.

In UK, guidelines suggest that anyone with B12 deficiency with neuro symptoms should be on injections even if cause is dietary. See next link to BSH Cobalamin and Folate Guidelines for more info.

BSH Cobalamin and Folate Guidelines

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

Has your GP tested you for PA (Pernicious Anaemia) and Coeliac disease?

Is there a family history of auto -immune conditions?

If yes then make sure GP knows as this could increase the chances of you having an auto immune condition such as PA or Coeliac, both conditions that can lead to B12 deficiency.

Link about "What to do next" if B12 deficiency suspected

b12deficiency.info/what-to-...

If you suspect you have PA then worth joining and talking to PAS. Some of the info on the website is applicable to other causes of b12 deficiency besides PA.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no 01656 769717 answerphone

PAS office may be closed for part of holiday period but you should be able to leave a message on the answerphone.

PAS support groups in UK

pernicious-anaemia-society....

There are currently 16 PAS support groups in UK including 2 in Wales.

Link to a letter about B12 deficiency in vegans

vegansociety.com/resources/...

B12 book I found useful

"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's BNF info on treatment is not up to date.

BNF

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

BNF guidance on treating b12 deficiency changed recently. Your GP may not know this.

pernicious-anaemia-society....

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.

nhs.uk/common-health-questi...

Take someone supportive with you to appointments that might be challenging.Even better if they have read up about B12 deficiency.

3) Best piece of advice I ever got was to always get copies of all my blood test results.

I am aware of forum members who have been told everything is normal/no action on blood tests when there are actually abnormal and borderline results.

nhs.uk/using-the-nhs/about-...

In relation to B12 deficiency, I look particularly at serum B12, folate, ferritin or other iron tests, Full Blood Count FBC.

4) Don't be shocked if they stick a label of ME/CFS on you and then send you down the mental health route.

b12deficiency.info/misdiagn...

martynhooper.com/2018/02/10...

Many of us on here have had prior diagnoses of ME/CFS, hypochondria, psychosomatic symptoms, depression etc.

5) None of the tests used to help diagnose B12 deficiency and conditions such as PA and Coeliac disease are totally reliable. It is possible to have severe b12 deficiency with a serum b12 result that is well within normal range.

If you struggle to get adequate treatment from NHS then have a look at link below.

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Consequences of under treatment can be severe

PAS news item

pernicious-anaemia-society....

Have you thought about keeping a symptoms diary which tracks how your symptoms change from day to day? Can be useful evidence of deterioration and of any improvement if you get B12 treatment .

There are stories about young adults with b12 deficiency on these blogs. Sometimes the stories can be upsetting.

Martyn Hooper's blog about PA

martynhooper.com/

B12 Deficiency Info blog

b12deficiency.info/blog/

I wrote a very detailed reply on another thread with links to more B12 websites, B12 books, UK B12 guidelines and other b12 info which I suggest you have a look at.

healthunlocked.com/pasoc/po...

I am not medically trained.

Good luck

Thank you so much for your replies! They've given me such a boost I was feeling so fed up when I posted this.

The range was 37.5 - 187.5 as considered normal. Im nervous to stop taking the supplements for another test because although they haven't helped the physical symptoms they have loweded the cognitive problems and I'm too scared to stop taking them and go back to how I was feeling.

I've been told my vitamin d is low and ice been taking supplements for that, my doctors also gave me iron tables even though my results were low just incase they made a difference. I've also had my thyroid tested, along with full blood count and a few other things like diabetes. I'm going back tomorrow morning to ask them about b12 as they haven't tested it yet and I'll definitely print off the documents sleep bunny attacked (thank you so much) and my fiance is coming too because she doesn't want them to just keep brushing it off as anxiety.

Fingers crossed it goes well, thank you for all your help!

Your Active B12 is certainly well within the normal range. Which is good news.

Yes, the supplements that you took almost certainly affected the result.

Your symptoms sound very much like a B12 deficiency. The fact that oral supplements have fixed some of the symptoms means that the deficiency was almost certainly caused by a lack of B12 in your diet.

Keep taking the 1000 mcg supplements until you feel that the symptoms are no longer improving. After that you should be able to cope with lower doses, such as you'll find in supermarket multi-B vitamins.

When you see the doc explain that -

You thought the symptoms may have been caused by a lack of Vitamin B12 caused by your diet, so you've started taking supplements. They seem to have started making improvements so you want to continue them for six months to see if they are the fix you need. And can you come back for a blood test and a discussion in six months time?

The doc will probably be amazed that you seem to have sorted your problem out and have proposed a sensible plan of action. They will be happy that it turns out to be such a short consultation and will hope that the results in six months will be good.

Lurcher-lady profile image
Lurcher-lady in reply to fbirder

Hopefully, not like my docs, who twisted my words when I said I felt better after treatment, more or less saying ‘I trained 6 years to get where I am. I’m still saying you have polymyalgia. How many times do I have to tell you your B12 levels have risen so you are NOT deficient’. Made me feel very small 😭 Luckily felt confident enough to SI and now getting there slowly 😉

I strongly recommend Dr David Brownstein's book on B-12 deficiency. I had every single symptom you describe and now I am following his protocol and am so much better! I had to push my doctor to do what I wanted and then resorted to begging the help of my brother-in-law who's a doctor, and together I am getting what I need. Good luck to you!

If you have neurological symptoms that are not being helped by oral B12 (breathlessness, heart palpitations, pins and needles, muscle aches, tinnitus, dizzyness) you should be pushing as hard as possible to get hydroxocobalamin injections every 2nd day until symptoms stop improving. Oral B12 might increase your serum levels slowly, but, for reasons that are not well known, oral B12 does not always successfully treat symptoms.

See b12-institute.nl/caution-no...

Neurological symptoms that are left too long may not reverse.

Hi,

A few more links

UK B12 documents

BSH Cobalamin and Folate Guidelines

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

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

Flowchart outlines process for diagnosing PA and Antibody Negative PA in UK

Look carefully at the bottom right of this flowchart where it suggests that treatment should be continued if patient has shown clinical improvement even if second line tests such as MMA, Homocysteine, Active B12 are negative/normal range.

BMJ B12 article

bmj.com/content/349/bmj.g5226

Emphasises need to treat patients who are symptomatic even if their B12 level is within range.

BNF

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

BNF guidance on treating b12 deficiency changed recently.

pernicious-anaemia-society....

BNF Children

bnfc.nice.org.uk/drug/hydro...

NICE CKS

cks.nice.org.uk/anaemia-b12...

B12 books I found useful

"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.

"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 the following book

"Vitamin B12 deficiency in Clinical Practice" (subtitle "Doctor, you gave me my life back!" by Dr Joseph Alexander "Chandy" Kayyalackakom and Hugo Minney PhD

Some of the above books may be available from your local library service.

I hope you'll update the forum as to how you get on at the GPs. If you do, might be worth starting a new thread as replies on older threads sometimes get missed.

Even though your B12 deficiency is likely to be due to vegan/vegetarian diet, it is still possible to have an absorption problem as well so I would expect your GP to at least test you for PA (Pernicious Anaemia) and Coeliac disease.

PA tests

Intrinsic Factor Antibody (IFA) test

labtestsonline.org/tests/in...

Parietal Cell Antibody (PCA) test

labtestsonline.org/tests/pa...

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.

NICE guidelines Coeliac Disease (2015 version)

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

Coeliac Blood Tests

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

Other possible causes of B12 deficiency include diet, H Pylori infection, fish tapeworm infection, damage to terminal ileum (B12 is absorbed at terminal ileum), low acidity in stomach (hypochlorydia), Crohns's disease plus others.

H Pylori infection?

patient.info/digestive-heal...

Any exposure to Nitrous Oxide?

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

I agree with Martin_12 that you should be pushing for B12 loading injections every other day due to the presence of neurological symptoms.

GP can find the info on treatment for patients with b12 deficiency with neuro symptoms in their BNF book Chapter 9 Section 1.2

Your GP will almost certainly have a copy of BNF book on desk or bookshelf. I suggest taking a copy of BNF online info with you as well. See BNF link up page.

GP may argue that you do not need B12 treatment if your RBC Red Blood Cells are not enlarged/showing signs of macrocytosis.

If they say this,

1) worth referring them to relevant passages in BSH Cobalamin and Folate Guidelines which indicates that 50% of patients with b12 deficiency do not have macrocytosis.

2) pointing out that wording in BNF talks about hydroxycobalamin injections for the prophylaxis of macrocytic anaemia which means for the prevention of macrocytic anaemia.

In a nutshell, B12 jabs should be given to prevent macrocytic anaemia in patients with b12 deficiency.

It's vital to get adequate treatment to avoid neurological damage becoming permanent.

If GP is reluctant to consider treatment, you could refer them to info on SACD.

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

PAS article about SACD, sub acute combined degeneration of the spinal cord, access to PAS members only.

pernicious-anaemia-society....

Blog post from Martyn Hooper's blog, mentions SACD

martynhooper.com/2010/09/21...

"I'm going back tomorrow morning to ask them about b12 as they haven't tested it yet"

Might be worth writing letter to GP to express any concerns about treatment/diagnosis. You could take letter to appointment or write it as a follow up after appointment.

1) Letters avoid face to face confrontation

2) If letters reach GP before appointment they give GP time to do their own research.

3) In UK, letters to GP are supposed to be filed with patient's medical notes. I always included a request in letter to place a copy with my medical notes. Hopefully this means that info in letter is less likely to be ignored than info passed on verbally or on photocopies.

4) Letters create a paper trail which can be useful evidence in case of future complaint. Always keep copies of any letters sent.

5) Letters could include symptoms list, relevant personal and medical history, test results, extracts from UK B12 documents/articles, requests for referrals to specialists.

Referrals

As neuro symptoms present, have you been referred to

1) a neurologist?

2) a haematologist?

NICE CKS link up page suggests GPs should seek advice from a haematologist for patients with b12 deficiency with neuro symptoms. If GP won't refer you to a haematologist perhaps you can ask them to write to a local haematologist for advice.

3) If gut symptoms present, have you been referred to a gastro enterologist?

Gastro specialist should be able to spot signs of gut inflammation (gastritis) due to PA, Coeliac etc.

FBC

Get hold of a copy of your FBC Full Blood Count results. There can be useful clues on this as to whether B12, folate or iron deficiency is present.

GPs often look for enlarged RBC Red Blood Cells when they suspect B12 and/or folate deficiency. The scientific name for this is macrocytosis.

Iron deficiency can lead to small RBC, term is microcytosis.

A patient with both B12 (or folate) deficiency and iron deficiency may appear to have normal size RBC on FBC becuase the effects of iron deficiency on RBC can mask the effects of B12/folate deficiency.

Some UK GPs may not be aware that not everyone with B12 deficiency will have macrocytosis. See BSH Cobalamin and Folate Guidelines for more info and have a copy in your bag when you see GP with relevant bits circled.

Useful English articles from Dutch B12 website

Misconceptions about a B12 deficiency

stichtingb12tekort.nl/weten...

Treatment with high dose vitamin B12 been shown to be safe for more than 50 years

stichtingb12tekort.nl/weten...

Blood tests

b12deficiency.info/b12-test...

Macrocytosis

patient.info/doctor/macrocy...

Full Blood Count and Blood Film

labtestsonline.org.uk/tests...

patient.info/doctor/periphe...

Folate Deficiency

patient.info/doctor/folate-...

Iron Studies

labtestsonline.org.uk/tests...

Help for GP

1) PAS website has section for health professionals. Although dealing with PA (Pernicious Anaemia) some info will be applicable for people with other causes of b12 deficiency.

pernicious-anaemia-society....

It is free for your GP to join PAS as an associate member.

2) PAS website has section with useful leaflets. PAS members can print off the leaflets/articles eg "An Update for Medical Professionals: Diagnosis and Treatment"

pernicious-anaemia-society....

3) I gave one set of GPs a copy of Martyn Hooper's book " ". Bear in mind that BNF info on UK treatment in this book is not up to date. I suggest putting a copy of up to date BNF info in book if you give them a copy.

4) PAS members may be able to arrange for their GPs to talk to PAS.

Have a look at the Mayo Clinic article mentioned in this link to another forum thread which suggests that none of the tests used to help diagnose B12 deficiency eg serum B12, MMA, homocysteine, Active b12 (HoloTC) are infallible.

healthunlocked.com/pasoc/po...

Another Warning

Some parts of UK are using local guidelines on treatment/diagnosis of b12 deficiency that are years out of date and do not match what is in BSH Cobalamin and Folate Guidelines.

I suggest trying to track down the local guidelines for your part of UK and comparing them with national guidelines/articles eg BSH, BNF, NICE CKS, BMJ etc.

If GP is following out of date local guidelines you may have a real fight to get adequate treatment.

You could ask GP what guidelines they are using but take care as some GPs do not respond well to being questioned. I am pleased that you are taking someone with you.

Having a witness to what is said can be useful...I had some very unpleasant experiences with doctors and had no-one to back me up.

Good luck

Fingers crossed for you.

What was the MCV (mean corpuscular volume, size of red blood cells) on your full blood count? MCV may get high when b12 is low, though less so if you get lots of folate from veggies.

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