Advice needed please

[Fallingapart0627]

Hi, I have been experiencing various problems over the years but the last couple of months I seem to have crashed. I tested positive for Parietal cell and Intrinsic Factor antibodies about 5 years ago but I didn't think too much about it at the time and my GP dismissed it as not important. I suffer from gastritis, fibromyalgia, asthma, hypothyroid and have had problems with posterior scleritis. It was actually the eye hospital who ordered the IF blood tests. I have now been suffering from, among other things, numbness in legs and feet and extreme tiredness, feeling freezing cold and very anxious and depressed. I am going to ask my GP for a trial of B12 injections but I am not optimistic. Can I insist? Thank you.

[JanD236]

Yes I think you should be optimistic and indeed should insist not to a trial but to proper treatment as per guidelines. You’re showing many symptoms of vitamin B12 deficiency and have tested positive for intrinsic factor antibodies. In addition, you also have another autoimmune illness, assuming your hypothyroid is hashimotos and it’s not uncommon to have both PA and thyroid problems.

Has your level of vitamin B12 ever been tested?

You need to see your GP as a matter of urgency. Your folate level should also be tested together with ferritin and a complete blood count.

[Fallingapart0627 in reply to JanD236]

Hi, thank you for replying. I have been low in folate on quite a few occasions and have just been given a 3 month supply of folic acid with no real explanation. My blood count has always been within range so maybe that’s why the GP dismissed the positive IF and PCA test. I will ring the society in the morning for advice before I go to see my GP about the injections. Thank you so much. Take care.

[Sleepybunny]

Hi,

Please consider joining the PAS (Pernicious Anaemia Society) and talking to them as soon as possible.

You could leave a message on their answerphone.

PAS office is open on Tuesday am and some other mornings.

Don't delay seeking support as untreated B12 deficiency from PA and other causes can lead to permanent neurological damage including SACD, sub acute combined degeneration of the spinal cord.

"I tested positive for Parietal cell and Intrinsic Factor antibodies about 5 years ago but I didn't think too much about it at the time and my GP dismissed it as not important. "

I am shocked by your GPs attitude.

Positive results in both parietal cell antibody PCA test and intrinsic factor antibody IFA test in my understanding (I'm not medically trained) mean a diagnosis of PA (Pernicious Anaemia).

Have they really left you untreated for 5 years?

I'm surprised you're still walking.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no 01656 769717 answerphone

PAS support groups in UK

pernicious-anaemia-society....

Blog post about how PAS can support PAS members seeking PA diagnosis

martynhooper.com/2017/06/24...

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.

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.... See Page 2 of articles.

Blog post from Martyn Hooper's blog, mentions SACD

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

"I am going to ask my GP for a trial of B12 injections but I am not optimistic. Can I insist? "

I strongly recommend talking to PAS first before tackling GP as they can point you to useful info to pass to GP. If you join they may also be able to intervene on your behalf.

If you join PAS you can access articles/leaflets such as "An Update for Medical Professionals: Diagnosis and Treatment"

pernicious-anaemia-society....

I also suggest you have a thorough read of info on next website link.

B12 Deficiency Info website

b12deficiency.info/

I also suggest that you consider putting your concerns in a letter to GP and copied to practice manager. See letter writing link down page. Keep copies for yourself.

Before tackling GP you might want to get a copy of your medical records which hopefully will have proof of your PA diagnosis. If GP surgery senses the possibility of a complaint they can become very protective of their staff.

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

In UK, letters to GP are supposed to be filed with medical notes so are less likely to be ignored than info passed on verbally or on photocopies.

Letters could include symptoms list, test results, relevant personal and family medical history, extracts from UK documents, referral requests.

CAB NHS Complaints

citizensadvice.org.uk/healt...

HDA patient care trust

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

hdapatientcaretrust.com/

I suggest reading all of these documents below

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.

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".

Referrals

You describe symptoms that are usually considered to be neurological eg numbness.

Have you been referred to a neurologist?

A haematologist?

A gastro enterologist if gut symptoms present?

Make sure you tell or write down for them that you had positive results in PCA and IFA tests 5 years ago.

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...

Link below is to another thread on the forum where I wrote very detailed relies with lots of b12 info. I suggest having a look when you have time.

healthunlocked.com/pasoc/po...

Sorry but I've run out of energy to write more other than to say again please think about speaking to PAS.

[Fallingapart0627 in reply to Sleepybunny]

Hi, thank you so much for your reply. I started with left leg numbness 2 years ago and it was put down to herniated disks so was just referred to physio. I did ask about possible PA but the Doctor just said no as my bloods were ‘normal’ I have felt really unwell now for about 5-6 weeks and it started with back pain, weight loss, nausea and upset stomach. The numbness is also going worse. I will take your advice and ring the number first tbing tomorrow. Thank you again and take care.

[Sleepybunny in reply to Fallingapart0627]

Hi,

"have just been given a 3 month supply of folic acid with no real explanation"

See Management section in next link which explains that giving folate treatment for folate deficiency without treating a co-existing B12 deficiency can lead to neurological damage .

Folate Deficiency

patient.info/doctor/folate-...

Your GPs should be aware of this possibility.

There will also be some info on this in BSH Cobalamin and Folate Guidelines.

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

Might be worth either putting relevant quotes into a letter to GP or printing out a copy of complete guidelines and circling relevant bits.

I feel so angry on your behalf.

Take someone supportive with you to next appointment with GP; preferably someone who has read about b12 deficiency and PA.

If you join PAS, I suggest printing out their article on SACD to give to GP and requesting a referral in letter to GP to a neurologist to be assessed for SACD .

If they're reluctant to refer you, you could point out that 5 years without B12 treatment could already mean there is spinal damage .

If they are still reluctant then consider getting a private neurological assessment.

Consider following up any appointment with GP/specialist with a letter especially if you're unhappy with appointment. This creates a paper trail which can be useful if there is a need to make a formal complaint in future.

After the election, you could also talk to your local MP about how you've been treated or in your case, how you have not been treated.

If all else fails some people on forum choose to self treat. Hopefully the GP surgery will be so scared by the possibility of a formal complaint that they'll agree to start treatment straight away.

Having thyroid issues and PA can also mean an increased chance of other auto immune conditions eg Coeliac disease, lupus , hughes syndrome and otehrs.

Has GP excluded possibility of other health conditions?

In UK, anyone with unexplained B12, folate or iron deficiency should be tested for Coeliac.

NICE guidelines Coeliac Disease

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

Coeliac Blood Tests

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

"I suffer from gastritis"

Have you ever seen a gastro enterologist and have you ever had an endoscopy?

Link about Endoscopy

nhs.uk/conditions/endoscopy/

Gastro specialist should be able to spot signs of gut damage and may be able to say what has caused them. It could be further evidence of PA.

[Fallingapart0627 in reply to Sleepybunny]

Hi, thank you so much for the information. I am really angry too and so worried that the GP may still try to fob me off tomorrow. If they refuse to treat me then I don't really know where to turn.

[Sleepybunny in reply to Fallingapart0627]

You could write a letter containing relevant info to hand in at GP surgery and asking for treatment to be started immediately due to your neuro symptoms.

As you have neuro symptoms my understanding is that you should be put on every other day loading jabs for as long as symptoms continue to improve then a jab every 2 months. See BNF link. GP can also find info in their BNF book Chapter 9 Section 1.2

There is no time limit on how long every other day loading jabs can continue; don't let them fob you off with just 6 over 2 weeks which is what is recommended for those without neuro symptoms.

Try to take someone with you who can be a witness.

The sad thing is you are not alone. See stories on blogs below.

UK B12 Blogs

Martyn Hooper's blog about PA

martynhooper.com/

B12 Deficiency Info blog

b12deficiency.info/blog/

[Fallingapart0627 in reply to Sleepybunny]

I will take my partner with me as he is also really worried. Thank you again.

[fbirder]

You have Pernicious Anaemia.

You need to be treated with injections, for life.

You need to be referred to a neurologist.

You should not start the folic acid until the B12 treatment has started - b12science.com/B12Science/D...

[Fallingapart0627 in reply to fbirder]

Hi, Thank you for taking the time to respond. I think it is definitely PA too after reading up on it. I have also bought a couple of books mentioned above. I just need to try and get my GP to agree to injections. Thank you and take care.

[Sleepybunny in reply to Fallingapart0627]

One thing I forgot to mention is that some parts of UK are using local area guidelines on treating b12 deficiency which are years out of date and do not match what is in national guidance.

Worth getting hold of local guidelines for your area and comparing them with BSH, BNF , NICE CKS links. It may help to explain why GP has not started treatment.

[Fallingapart0627 in reply to Sleepybunny]

I will try and find this information. Thank you so much!

[Sleepybunny in reply to Fallingapart0627]

If you join PAS, you can then access details of PAS support groups.

There are 16 in UK so may be one close.

pernicious-anaemia-society....

It's good emotional support and also a way to find out if there are helpful GPs in area.

B12d.org also has support meetings near Durham.

b12d.org/event

I hope you'll update us on how you get on. May need to start new thread if you do update as people can miss responses on old threads.

[Fallingapart0627 in reply to Sleepybunny]

I will definitely be joining and I will keep you updated, hopefully with some positive news if GP agrees to injections tomorrow. I will also be insisting on a referral to Neuro. Thank you for all your advice!

[Sleepybunny in reply to Fallingapart0627]

Ways to find local guidelines

1) Internet search eg "B12 deficiency guidelines + name of your area"

2) Request to practice manager for a copy of local guidelines; this may irritate them.

3) Search on local NHS website, try under haematological policies.

4) Freedom of information (FOI) request to local NHS website

5) Local MP may be able to help you track them down

[Sleepybunny]

Hi again,

"My blood count has always been within range so maybe that’s why the GP dismissed the positive IF and PCA test."

B12 and/or folate deficiency can lead to enlarged red blood cells RBC. Medical term is macrocytosis.

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

What are your iron results like eg ferritin?

A person with both B12 and/or folate deficiency who also has iron deficiency may appear to have normal results on Full Blood Count FBC because the effects of iron deficiency on RBC mask the effects of B12/folate deficiency.

Have you got access to FBC results? Look particularly at MCV, MCH, MCHC, RDW.

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...

Some GPs mistakenly believe that you have to be showing signs of macrocytosis to have B12 deficiency. I think about 50% of people with B12 deficiency do not show macrocytosis.

There is info about this in BSH Cobalamin and Folate Guidelines so might be worth circling relevant info about macrocytosis in a copy.

There is a useful summary of B12 documents in fifth pinned post on this forum which I think mentions macrocytosis .

Misconceptions about a B12 deficiency

(English language article from Dutch B12 website)

stichtingb12tekort.nl/weten...

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

(English language article from Dutch B12 website)

stichtingb12tekort.nl/weten...

Best advice I ever got was to always get copies of blood test results. I learnt to do this after being told everything was normal/no action on more than one occasion and then I found abnormal and borderline results on the copies.

These days I don't trust what I am told about results unless I have a copy in my hand or on screen.