Update. Daughter with B12 Deficiancy - Pernicious Anaemi...

Pernicious Anaemia Society

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Update. Daughter with B12 Deficiancy

nano2
nano2

So my Daughter had her last loading dose on Friday 29 March. Took her Drs on 1 April to discuss the guidelines which she wasn’t aware of. She gave us a form for Blood Test I said it shouldn’t be done until 2 months after loading dose as it will give high reading. She couldn’t make her mind up to send her to see Haematologist or Neurologist because she’s still got all the same symptoms and a few more. So Haematologist it is. But no appointments for months.

5 April. Back to docs after a rough few days no weeks. I asked for her to be put back on to the B12 injections got a point Blank No as her Blood reading was 2000. She suggested to get her seen quicker going back to hospital on the EMU and she would contact to say she needs to be seen by the Haematologist. My daughter refused and we have decided to get a private consultation I’m going to upload her results so advice would be welcome and any questions we need to ask the Haematologist. Sorry for long post

11 Replies
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You will notice 12 March where B12 & Folate low My Daughter got admitted to hospital on the 14 the same day as she’s received a letter from The GP asking her to make an appointment to discuss this but stated no urgency

Gambit62
Gambit62Administrator

sorry but it is very difficult to read anything on the test results.

I hope that the private haematologist is more clued up on B12 than your GP but it is probably worth taking the guidelines with you just in case and hope that they are prepared to listen.

Other actions to consider

a) writing to GP and copying to practice administrator re where daughter is not being treated in line with BCSH guidelines

b) joining the PAS proper and contacting them. They may be able to help more on contents of letter

pernicious-anaemia-society....

pernicious-anaemia-society....

Hi,

Some B12 links that may be of interest.

I am not medically trained.

Symptoms of B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/signs-an...

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Lots of useful B12 info in above link.

Have you considered writing a letter to GP?

CAB NHS Complaints

citizensadvice.org.uk/healt...

HDA patient care trust

UK charity that offers free second opinions on medical diagnoses and medical treatment. They use a network of specialist doctors across UK.

hdapatientcaretrust.com/

UK B12 documents

Suggest reading all of these if in UK.

BSH Cobalamin and Folate Guidelines

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

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

Outlines process in UK for diagnosing PA and Antibody Negative PA.

BMJ B12 article

bmj.com/content/349/bmj.g5226

BNF

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

BNF guidance on B12 treatment changed recently.

pernicious-anaemia-society....

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). Does not mention recent BNF change.

"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".

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769717 answerphone

PAS support groups in UK

pernicious-anaemia-society....

If you're in UK, may be a support group close to you, can be a useful source of info eg helpful doctors. Need to be a PAS member to attend.

pernicious-anaemia-society....

B12 Deficiency Info website

b12deficiency.info/

B12d.org

b12d.org/index

B12d.org holds support meetings near Durham.

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 suspected

b12deficiency.info/what-to-...

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...

Coeliac Disease

UK guidelines below indicate that anyone with unexplained B12, folate or iron deficiency should be tested for Coeliac disease.

NICE guidelines Coeliac Disease (2015 version)

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

Coeliac Blood Tests

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

Any exposure to Nitrous Oxide?

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

Any tests for H Pylori infection?

patient.info/digestive-heal...

Untreated or under treated B12 deficiency can have severe consequences. Is GP aware of the potential consequences?

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...

"asked for her to be put back on to the B12 injections got a point Blank No as her Blood reading was 2000"

BSH Cobalamin and Folate Guidelines indicate that testing B12 levels after treatment has started is irrelevant. Has GP seen relevant part of this document?

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

stichtingb12tekort.nl/weten...

Misconceptions about a B12 deficiency

stichtingb12tekort.nl/weten...

Referrals

"couldn’t make her mind up to send her to see Haematologist or Neurologist "

I have in past put request for referrals to specialists into a brief letter along with evidence/info that supports request eg symptoms, test results, personal and family medical history, extracts from relevant UK guidelines.

You mention neurological symptoms in other thread.

Has your daughter formally requested a referral to a neurologist eg in a letter? Might be worth mentioning all neuro symptoms she has eg tingling, pins and needles, tinnitus, tremors, balance problems, vertigo, memory problems, word finding difficulty plus any others.

....and that it's important to rule out any possibility of SACD (sub acute combined degeneration of the spinal cord).

One of the neuro symptoms associated with B12 def is problems with proprioception (awareness of body in space).

Two neuro tests that test proprioception are

1) Romberg test

2) Walking heel to toe with eyes closed

Videos of these tests on Youtube. Important that they are only carried out by a doctor at medical premises due to risk of loss of balance.

If neuro tests do not include any tests with eyes closed then it's unlikely in my opinion that proprioception sense has been fully tested.

nano2
nano2 in reply to Sleepybunny

Thanks. No she’s not requested Neurological referral but would have thought GP should have referred her for both Neuropathic and Haematologist at the same time but I will now request it. Yes she has all those symptoms. I did notice or should I say there doesn’t seem to be any numbers what her B12 and folate were that the drs did on her results for 12 March that they thought there was no urgency and to contact within 2 weeks.

Sleepybunny
Sleepybunny in reply to nano2

Hi again,

"would have thought GP should have referred her for both Neuropathic and Haematologist "

Sadly, I learnt that the only way I was going to get a referral was to challenge my GP politely and make the request in writing. The GP however does not have to agree to a referral request.

In UK, my understanding is that letters to GPs are supposed to be filed with a patient's medical records and are therefore in my opinion harder to ignore than something said in an appointment.

I always keep copies of any letters sent to GPs/specialists in case I need to refer to them in future as sometimes letters sent can go missing......

Being an assertive patient can upset some GPs so she needs to be prepared for GP/patient relationship deteriorating and have a back up plan eg another GP practice in mind.

If you are acting on your daughter's behalf, you may need her signed written permission to do so to keep GPs happy.

The most important advice I ever had was to always get copies of all blood test results.

I learnt to do this after being told everything was normal and then finding abnormal and borderline results on copies. I was told on more than one occasion that a particular blood test had been done and then found out it had not been done when I got copies.

Some people on forum get a complete set of medical records. Can be very interesting to see what has been written in past by GPs.

GPs have to correct any factual mistakes eg wrong name, date of birth etc but do not have to change records just because a patient disagrees with a diagnosis etc. It is possible for a patient who disagrees with what has been written to have a brief note inserted in records giving their opinion.

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 the info required. For example, it may not have copies of letters from specialists to GP. It is my understanding that UK patients can also formally request access to/copies of paper records.

Access to Medical Records

Process may vary according to which part of UK you're in.

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

(link above mainly about online access )

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

"Yes she has all those symptoms"

Some more neuro symptoms....

migraine, formication ( feels like insects crawling on skin), restless legs syndrome (can affect other body parts as well as legs), strange behaviour eg putting keys in fridge, clumsiness, dropping things, PLMS (periodic limb movements of sleep) these are limb jerks and can also happen during the day, muscle twitching etc, burning sensation in feet ( Grierson Gopalan syndrome) and there are many others.

"I asked for her to be put back on to the B12 injections got a point Blank No as her Blood reading was 2000"

Do I understand correctly that the GPs have stopped her B12 treatment totally?

Stopping treatment in someone who has b12 deficiency could put patient at risk of permanent neurological damage eg SACD

Blog post about help if B12 jabs stopped

b12deficiency.info/blog/201...

PAS blog posts about stopped injections

martynhooper.com/2018/12/23...

martynhooper.com/2016/09/23...

martynhooper.com/2016/04/24...

PAS leaflets

"An Update for Medical Professionals: Diagnosis and Treatment"

"Treatment is for life"

pernicious-anaemia-society....

Need to be PAS member to access these.

Has she been tested for PA (Pernicious Anaemia)? In UK, this would be an Intrinsic Factor Antibody (IFA) test but IFA test is not always reliable and it is still possible to have PA even if IFA result is negative (Antibody Negative PA).

If all else fails, many on forum choose to self treat.

Thank you Sleepybunny for your reply. I’m hoping to get some answers to this nightmare. I will follow your advice on the Links. Thank you so much

From these tests her ferritin and iron look low. This will make her feel awful too. Ferritin should be 80 ideally. My daughter is on ferrous sulphate tablets to bring hers up (started at 14).

Also get them to check her vit D.

Is she taking folic acid or folate?

nano2
nano2 in reply to Vicky2822

Hi Vicky2822. Yes she is taking folate started 21 March after seeing GP although hospital said to start the dose1 April. Vit D said generally considered adequate for bone and overhaul health in healthy individuals. She’s Asthmatic,Eczema since a baby & Hiatus Hernia just over 8yrs then this B12 severe deficiency

Hi Thanks Sleepybunny, for all the information. The Dr has refused to keep her on injections every other day. Another Dr has changed her next dose to 3 months instead of 2 month which was stated on Hospital paper work when she was discharged. I’ve got my daughter to sign a letter giving me permission to deal on her behalf, have got an appointment to see the Dr tomorrow to ask for a referral for Neurologist. She’s had an awful weekend and today with extreme pain & Burning in her feet even though she’s got the pain killers and very emotional. Her Feet I noticed today are very swollen across the ball of the foot. So could there be something else going on or nerve damage causing it.

Signed up to online at the Dr’s and Dr gave us copies of blood test results. I’m emailing Hospital for copies of Blood results she had done in hospital. Haematologist app for next week. I’m trying to take as much information in from all the lovely people on here including yourself.

Hi,

"Yes she is taking folate started 21 March "

It's vital that any co-existing B12 deficiency is adequately treated if folate treatment is being given. There may be neurological consequences if co-existing B12 deficiency is not treated adequately. See link in my first post about Folate Deficiency and read BSH Cobalamin and Folate Guidelines for more info.

"Another Dr has changed her next dose to 3 months instead of 2 month"

Next time you see this GP might be worth taking copies of following documents or writing a letter pointing out current BNF guidance. GP may not know that BNF guidance changed recently and may be using a BNF book that has not been updated.

Recent BNF change

pernicious-anaemia-society....

BNF

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

NICE CKS

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

UK B12 treatment

1) UK treatment for B12 deficiency without neuro symptoms

6 B12 loading jabs over 2 weeks followed by a B12 jab every 2 or 3 months.

2) UK treatment for B12 deficiency WITH neuro symptoms

A B12 loading jab every other day for as long as symptoms continue to get better (could mean loading doses for weeks even months if improvement continues) followed by a jab every 2 months.

My understanding (I'm not medically trained) is that as she has neuro symptoms eg burning feet, she should be on second pattern of treatment.

"Dr has refused to keep her on injections every other day"

How many of these every other day jabs has she had?

"got an appointment to see the Dr tomorrow to ask for a referral for Neurologist"

Might also be worth putting request in writing in a follow up letter.

Have you found out if she was tested for

PA?

In UK, diagnostic test for PA is an Intrinsic Factor Antibody test (IFA). IFA test is not always reliable and it is still possible to have PA even if IFA result is negative (Antibody Negative PA). In other countries, parietal cell antibody test is sometimes used but is not recommended as diagnostic test for PA in UK.

Coeliac?

If she has been tested, did GP/specialist

1) Tell her that she should eat plenty of gluten in more than one meal a day for several weeks before Coeliac tests?

One reason for a negative result in Coeliac tests is that patient was not eating enough gluten prior to test so there were not enough antibodies to gluten in blood to register a positive result.

2) Did GP/specialist order both tests recommended in NICE Guidelines Coeliac disease? In UK, sometimes doctors only do the tTG IgA test.

a) tTG IgA

b) Total IgA

tTG IgA test checks for a particular antibody to gluten.

Total IgA test checks for patients who have IgA deficiency. Patients with IgA deficiency will not produce the antibodies that tTG IGA test looks for even if they have Coeliac disease.

Patients with IgA deficiency need alternative tests for Coeliac disease.

H pylori?

Has she been checked for other auto immune conditions eg lupus, thyroid problems?

lupusuk.org.uk/

thyroiduk.org/

Has she ever been checked for diabetes?

diabetes.org.uk/

"She’s Asthmatic,Eczema since a baby & Hiatus Hernia just over 8yrs"

Has she checked to see if any medication she is on might interfere with B12 or folate levels?

b12deficiency.info/what-are...

If she has gut symptoms eg bloating, constipation, diarrhoea etc has she seen a gastro enterologist?

Has she ever had an endoscopy to check if she had any gut damage, gastritis (inflammation of gut lining)? PA, Coeliac and H Pylori can lead to gastritis and there are other causes of gastritis.

nhs.uk/conditions/endoscopy/

nhs.uk/conditions/gastritis/

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