Pernicious Anaemia Society
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Diagnosis

Hi, I’m after some advice as I’m totally confused! Symptoms are extreme fatigue, low mood, emotional, depression, brain fog, confusion, lack of energy, balance and dizziness issues, heavy restless legs, pins and needles in arms, numbness in toes, pale complexion (almost like a death mask some days) sickness and breathlessness.

Had blood tests which showed extremely low levels of B12, Iron and Viamin D. Started tablets for these deficiencies on 28/11/17. Had blood test on 21/12/17 and just got the results which the doctor said was ‘normal’ I was convinced it was PA and was banking on getting injections today as I’ve had an awful few weeks.

Doc (not my usual one, my appt with him wasn’t until the 15th Jan and I couldn’t wait that long) refused saying I’m not anaemic, my levels are all fine and have increased from 1.9 to 5.3 since taking the B12 tablets (whatever that means) yet I feel worse not better.

I don’t know what to do. She wants to treat me for depression with tablets and counselling but I’m only down because of my symptoms. I’m self employed and can’t work most days because I feel so bad yet I’m not getting any benefits or sick pay etc so I need this sorting ASAP.

I’ve been made to feel like I’m making it up. She even said ‘I wish people would stop going on about B12, it isn’t that and it’s not a miracle cure!’

I don’t know where to go from here. I said I’d think about the anti depressants and let her know. Should I just try that? (By the way, I have felt this way for 4 years now, it’s steadily getting worse and I gave up my career because of it)

Thanks in advance for any help offered...

19 Replies
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Hi Turnerpie

Sorry to hear you are feeling so bad and your GP isn't being supportive.

Could you post your blood results so we can see what your situation is? We need to see the range and the units too. If you don't have the results, you should be able to ask the receptionist for a printed copy although there may be a small charge.

We are all (in UK) entitled to any test results, including bloods. What the GP calls 'normal' isn't always what is really 'normal', or 'with range'. It's also very much about where on the range which may indicate something that needs further investigation ;)

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Thanks so much for replying. I didn’t know you could do that! I’ll go and get the results tomorrow and add it to the thread.

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Once you've posted results, you'll be in a better position for people to try to help you :)

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Hi,

I've assumed you're in UK.

Sorry to hear you are struggling to get treatment. There are details of UK b12 treatment in BSH Cobalamin and Folate Guidelines (link further down page).

"Doc (not my usual one...... refused saying I’m not anaemic"

Quite a few with B12 deficiency do not have anaemia. See BSH Cobalamin and Folate Guidelines for more details. These guidelines and the BMJ article (link further down) make it clear that people with B12 deficiency symptoms should be treated whether or not they have anaemia. Delaying treatment increases the risk of permanent neurological damage.

Article about Misconceptions about B12 deficiency from Dutch b12 website (in English).

stichtingb12tekort.nl/weten...

Access to medical records (England)

If you're in UK, you may need to put a request for copies of blood test results in writing and sign it. It can take a few days to get copies ready as I think GP has to approve request. In UK, I think the only reason for refusing is if GPs believe that giving someone copies could cause the patient harm.

Some UK GP surgeries have access to an online summary of test results and medical records but it is only a summary. If you're in UK, should be something on your GP surgery's website about online access.

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

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

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

B12 Deficiency Symptoms

pernicious-anaemia-society.... See Checklist PDF on right of page

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

Risk factors for PA and B12 deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

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.

"Had blood test on 21/12/17 and just got the results which the doctor said was ‘normal’ I was convinced it was PA"

PAS

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769 717 answerphone

If you suspect PA , might be worth joining PAS (Pernicious Anaemia Society). They can offer support and info on PA.

Is the blood test you mentioned in above quote, an Intrinsic factor Antibody test (IFA)?

It's possible to have a negative or normal range result in this test and still have PA (called Antibody Negative PA).

UK B12 articles/documents

If you're in UK, I'd suggest reading all of these.

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...

Flowchart outlines when PA and Antibody Negative PA can be diagnosed in UK. Makes it clear that people who are symptomatic for B12 deficiency should have an IFA test and start initial b12 treatment.

BNF British National Formulary Chapter 9 Section 1.2

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

NICE

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

There is a useful summary of mainly UK B12 documents in third pinned post on this forum.

UK B12 blogs

Martyn Hooper's blog about PA

martynhooper.com/

B12 Deficiency Info blog

b12deficiency.info/blog/

Link about What to Do Next if b12 deficiency is suspected

b12deficiency.info/what-to-...

Links about Blood tests

In relation to B12, I look at B12, folate, ferritin and full blood count

b12deficiency.info/b12-test...

Macrocytosis

patient.info/doctor/macrocy...

Full Blood Count

labtestsonline.org.uk/under...

Folate Deficiency

patient.info/doctor/folate-...

Unhappy with treatment?

Link about writing letters to Gps about B12 deficiency

b12deficiency.info/b12-writ...

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

Point 5 is about being symptomatic with an in range B12 result.

CAB NHS Complaints

citizensadvice.org.uk/health/

HDA patient care trust

UK charity that offers free second opinions on medical diagnoses and medical treatment.

hdapatientcaretrust.com/

I am not medically trained.

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Yes I’m in the UK and it’s my first post on here...thank you for all those sources of info. That’s my evening of reading sorted! 👍 most helpful, thank you.

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Turnerpie - the results you are quoting sound more like the results for folate than the results of B12 - so would be really useful if you could get hold of a copy of your results.

If you have B12/folate and iron deficiency going on at the same time then interpreting blood results can be a bit tricky as you may have a mix of microcytosis (smaller red blood cells, from the iron deficiency) and macrocytosis (larger red blood cells from folate/B12 deficiency) - which would be likely to show up as a high RDW (Red blood cell distribution width) though that isn't always tested.

25% of people who are B12 deficient present without anaemia so absence can't be used to rule out B12 deficiency. Normal range for serum B12 will also result in missing 25% of people who are B12 deficient if that is used as a single measure.

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That’s so helpful and gives me a basis to work from. It’s all a bit of a foreign language to me at the moment so will have to read up about it all. Thank you. Gives me hope that I may be able to seek help, I’m trusting my gut on this one and know it isn’t depression.

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It's so much easier and cheaper to diagnose depression and prescribe anti depressants than to do further tests and refer to specialists especially when there are so many people with these symptoms. I think (I hope) people will look back one day on this period of medicine with horror and disbelief, in relation to this and other similar physical illnesses which largely go untreated, or mistreated, with terrible effects on people's lives (eg migraine, thyroid).

I don't want to malign the profession and the many excellent practitioners within it. But there are some glaring holes in the current system.

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Thanks for your reply. I totally agree, and this is what I most fear. I ended up crying during the consultation which to the doctor compounded her argument for depression but it was purely out of frustration and desperation because of how bad I’ve felt and I’m not being taken seriously.

I was diagnosed with depression in 2014, put on medication and paid a fortune for therapy privately over the course of 8 months. It didn’t really help and looking back I had all these current symptoms.

I feel that now that is on my records it’s the go to easy diagnosis yet I’m questioning whether it was this (whatever ‘this’ is) starting all along.

Another doctor told me my symptoms were ‘all in my head’ a year ago (and offered anti depressants again which were refused)

I resigned from my career two years ago that I’d worked hard for because of not being able to manage and I’m now a self employed mosaic artist.

If I can’t convince any of the doctors at my surgery (I’ve seen 4 so far) then I will have to accept medication for depression and just hope it helps enough to get me through each day. It’s starting to feel like I’m a problem they just want rid of. Yet if I had the B12 injections we would all know once and for all.

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Hey Turnerpie,

Just to let you know I had B12 deficiency (with all the symptoms you listed + anxiety + joint and back pain) but no anemia, it is totally possible (it is even frequent in vegetarian population because folates compensate B12D).

Do you think your deficiency comes from your diet (are you vegetarian or vegan?) or from an absorption problem?

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Hi,

Well I had recently stopped eating meat for three months before seeing the doctor in November and he advised I start eating it again as he thought my dietary change had impacted on my vitamin levels.

I’ve begun eating meat again and eat a very varied diet so I’m convinced it’s an absorption issue.

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Hi,

Were you eating plenty of fish, shellfish, dairy (milk, cheese, yoghurt) and eggs before being tested as these are likely to be good sources of B12?

Is the GP planning to test your B12 levels again after you've been eating meat again for a few weeks? Might be worth keeping a diary of a typical weekly diet as evidence of what you have been eating.

B12 Deficiency and Mental Health

b12deficiency.info/b12-and-...

martynhooper.com/2017/01/22...

Coeliac Disease

NICE guidelines on Coeliac disease below specify that anyone with unexplained B12, folate or iron deficiency should be tested for Coeliac disease.

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

Have you had tests for Coeliac disease? In UK, two first line tests for Coeliac disease are recommended.

1) tTG IgA

2) Total IgA

My experience is that the second test, total IgA is not always done. It's an important test as people who are IgA deficient need different tests for Coeliac disease.

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

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Yes I was eating really well. I started taking B12, Vit D and Iron on 28th November following my blood results showing the deficiencies.

When I went to the doctors last night it was to get the results which were taken on 21st December.

The doctor I saw though wasn’t my usual doctor so I’ve booked to see him on 15th Jan where I’ll be begging for injections.

I’ve run out of B12 tablets too but if they’re not being absorbed via stomach anyway I guess it doesn’t matter!

I have a lot more reading to do before then so I’m well prepared. It was my main doc who investigated further as he didn’t think I had depression so fingers crossed!

Reply

Hi,

"I’ve run out of B12 tablets too"

Taking supplements without a diagnosis can make it very difficult to get a diagnosis. See link below.

b12deficiency.info/b12-test...

"have increased from 1.9 to 5.3 since taking the B12 tablets"

Did GP advise taking b12 tablets?

B12 results that low (1.9 to 5.3) could mean people were bedbound or possibly worse........

What strength B12 are they?

Do you have neurological symptoms eg tingling, pins and needles, tinnitus, tremors, memory issues, balance problems plus other symptoms.

UK treatment for B12 deficiency without neuro symptoms

6 loading jabs over 2 weeks then a jab every 3 months

UK treatment for B12 deficiency with neuro symptoms

A loading jab every other day for as long as symptoms continue to get better (could mean loading jabs for weeks even months) then a jab every 2 months.

See BNF and BSH Cobalamin and Folate Guidelines links above.

Blood results

Do you have blood results for B12, folate, ferritin and full blood count (FBC)? People may be able to comment on the numbers.

PAS

I'd suggest talking to PAS before your next appt if possible.

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That is so helpful, honestly I can’t thank you enough.

I have most of those symptoms plus my eyesight is suddenly blurred, I had to get some cheap reading glasses. I have a very grey tone to my skin. I get funny looks I look so bad. Dry skin patches, really painful gums. Dizzy spells, I’ll topple when putting shoes on or suddenly walk into the wall. Breathlessness with any exertion. If I walk the dogs I spend the next day on the sofa. The worst part for me is that it’s like someone’s pulled the plug. I’m so lifeless and struggle to remember things and desperately want my life back.

I used to be very active.

My doctor didn’t say what my levels were before starting the tablets but he commented that I was ‘Severely deficient’ and urged me to eat well and take the cyanocobalamin 50mcg x3 daily to get my levels up. He didn’t mention injections or anything it was a friend who has the injections that pointed me in this direction.

I’m going to get my blood results and then print off some of the info given on here to take with me to my next appointment. Hopefully he will willingly look further into it rather than agree with his colleague regarding depression.

You’ve been so helpful...thank you.

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I wonder if someone here can recommend a decent doctor for you to go to?

Remember that high does sub-lingual B12 tablets work for most people. (I know there are some on this forum that they don't work for, but they work for everyone in my family.) You absorb them from under your tongue or placed between cheek and gums - and the B12 goes directly into the bloodstream via the mucous membranes. You can get them online in all kinds of places. I take B12 5000 iu sublingual. You can also get nasal sprays from chemists, usually only about 1000iu. It all varies from country to country. It sounds like you should also check your thyroid; often thyroid and B12 problems go together. You then need to have your T4 and T3 checked, not just your TSH, although that is what most doctors do.

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Hi again,

"Dizzy spells, I’ll topple when putting shoes on or suddenly walk into the wall."

My understanding of the BSH Cobalamin and Folate Guidelines and BMJ B12 article is that people who are symptomatic for B12 deficiency with neuro symptoms should be on the neurological B12 treatment regime outlined in my post above.

"he commented that I was ‘Severely deficient’ and urged me to eat well and take the cyanocobalamin 50mcg x3 daily to get my levels up. "

So, if I understand correctly, the GP acknowledged you were severely B12 deficient and put you on 3 oral cyanocobalamin 50mcg a day. This is not the UK recommended treatment for someone who is B12 deficient with neuro symptoms.

Oral b12 has to go through the digestive system so only a very small amount gets into the blood stream which may not be enough to start nerve repair in someone with neuro symptoms.

If GP opens their copy of the BNF , a slim book and there is probably a copy on their desk or bookshelf and turns to Chapter 9 Section 1.2, they can see the neurological B12 treatment regime. It's possible to get your own copy of BNF from good bookshop or internet retailer.

BSH Cobalamin and Folate Guidelines makes it clear that people who are symptomatic for B12 deficiency with neuro symptoms should be on neurological treatment regime whatever the cause of their deficiency.

Under treatment of B12 deficiency

The neurological consequences of untreated or under treated b12 deficiency should not be taken lightly. There is a risk of further deterioration including spinal problems.

Is your GP aware of the possible consequences of under treatment? Some forum members have put info in letters to GPs about this.

Link about writing letters about under treatment of B12 deficiency with neuro symptoms

b12deficiency.info/b12-writ...

PAS news item about Neurological Consequences of PA

pernicious-anaemia-society....

Blog post from Martyn Hooper's blog which mentions SACD, sub acute combined degeneration of the spinal cord.

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

PAS article about SACD, available to PAS members.

pernicious-anaemia-society.... See Page 2 of articles/leaflets.

Haematologist

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

See section headed "Referral" in above link.

Link mentions that GPs should seek advice from a haematologist for people with b12 deficiency with neuro symptoms. Has your GP contacted a haematologist?

Neurologist

Have you been referred to a neurologist? There can be many causes of neuro symptoms and there may be other conditions that need to be excluded.

People with B12 deficiency sometimes have problems with proprioception (awareness of body in space). I don't think any of the neurologists I saw, tested me for proprioception problems.

Two tests that can help to identify proprioception problems are walking heel to toe with eyes closed and a romberg test. It's very important that these tests are only carried out by a doctor due to the risks associated with losing balance.

Word of Warning

Just as with some GPs, B12 deficiency is not always as well understood by some specialists as it could be, so I suggest being well prepared for any haematology or neurology appts.

It's not unknown for people with b12 deficiency to be told their problems are due to ME/CFS or depression or psychosomatic causes.

Misdiagnosis of b12 deficiency

b12deficiency.info/misdiagn...

martynhooper.com/2015/08/04...

Probably worth joining PAS and talking to Martyn Hooper at PAS. Costs £20 for a year.

There are stories on Martyn Hooper's blog about people trying to get a PA diagnosis and how PAS has supported them.

martynhooper.com/2017/07/01...

If you look at the flowchart I gave a link to in one of my posts, then you can see guidelines on when PA or Antibody Negative PA can be diagnosed in UK.

I suspect your GP has assumed your deficiency is due to diet. Although you weren't eating meat, my understanding is that you were eating eggs, fish, shellfish and dairy products.

Were you also eating plenty of folate rich products eg fresh oranges, baked beans, egg yolks, milk, fortified breakfast cereals, broccoli, brussel sprouts, chick peas etc?

My understanding is that folate metabolism has an impact on B12 levels.

It's possible to have more than one cause of b12 deficiency at the same time. See link about Risk factors in one of my posts above.

I will be surprised if you haven't been given an IFA Intrinsic Factor Antibody test. Perhaps you can check your copies of results when you get them and remember even if IFA result is negative or normal range it is still possible to have PA.

I gave the following to my GPs

1) Copy of Martyn Hooper's book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency"

2) Copy of PAS Symptoms Checklist with all my symptoms ticked plus I added other symptoms not on list

3) Copy of BSH Cobalamin and Folate Guidelines

Doctor /Patient Relationship

Some GPs find it difficult to cope with assertive patients who ask questions. You may find your relationship with the GP is affected. Mine was...but I'd got to the point that I felt I had nothing to lose.

My Experiences

I believe I have been left with some permanent symptoms due to the length of time it took for B12 deficiency to be acknowledged as a possibility. I am unable to cope with full time employment and tire really easily.

I had to be my own detective as my GPs, at the time my symptoms were at their worst ,were unhelpful and in the end I had to resort for a time to self treatment.

It's worth fighting for the correct treatment.

Some people on forum take a supportive friend or family member with them to appts. My feeling is that GPs are sometimes kinder when a witness is present. Another person can take notes or ask questions (with patient's permission) on patient's behalf. Even better if that person has read up about B12 in my opinion.

Good luck

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Please start keeping a journal of your symptoms. Back date information will also be relevant. Take this along to your Dr and s/he might be convinced. Also, I recommend taking a close family member who knows you well so they can advocate for you - a B12 deficient brain is often not up to the arguments required.

Good luck!

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Hi all,

Just back from my appointment with my usual GP. I explained my ongoing/worsening symptoms and that another doctor said I was depressed and that I need to accept it and stop delaying treatment for it! I’m not depressed. Just down because I’m so unwell.

He said that my B12 levels are within range (didn’t give me a copy but read out that they were 180 before the course of tablets and 590 after)

He’s told me he doesn’t think I have a deficiency but after I asked if I can try it anyway, agreed to a course of B12 injections once a week for a month then he’ll review it.

I know usually you’re supposed to have loading shots of one every two days for the first two weeks then it gets spaced out.

My husband had already ordered shots for me (I don’t mention this to my GP) which should arrive this week but I don’t know what to do now. Not sure if I should give myself the extra shots or do as my doctor says and go once a week to see how I get on?

He’s advised taking B12 tablets too to ‘top me up’ but if I’m not absorbing them I don’t see the point?

Very, very confused. He said he really doesn’t think it’s PA but has no idea what else it could be. At least he’s agreed to let me try the shots I suppose.

I’m also still taking my prescribed Vit D and Iron tablets. I’m still getting no ease from sleep, still confused, still absolutely exhausted and wobbly plus pins and needles etc etc...

Thank you for reading...

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