Sameold sameold problem one dose suits all

[donpen]

My doctor seems to think a twelve week dose is sufficient, so now gone from 8 to 12 now suffering from continuing headaches, of course I will need to go back to my doctor to find if there is a connection or some other problem. What concerns me is that this change has come about without any tests, so how do doctors know, is it by some magic or mysterious means. Has anyone else had similar probs???

[Sleepybunny]

Hi,

If you're in UK and you have neurological symptoms then UK guidelines suggest the following treatment pattern...

A B12 loading injection every other day for as long as symptoms continue to improve followed by a jab every 2 months.

If you don't have neurological symptoms the recommended treatment pattern is

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

Do you have any neurological symptoms eg

tingling

numbness

pins and needles

burning sensations

insect crawling sensation

electric shock sensations

tinnitus

muscle twitches

muscle fasciculations (ripple like muscle contractions)

periodic limb movements (limb jerks)

flickering eyelids

restless legs syndrome RLS

vertigo

migraine

clumsiness

dropping things

bumping into things

strange gait (unusual way of walking)

word finding problems

balance issues, brainfog

proprioception problems (problems with awareness of body in space) etc?

In relation to B12 deficiency, GPs often look for signs of peripheral neuropathy PN especially signs of sensory neuropathy so worth mentioning signs of PN.

Link about Peripheral Neuropathy

nhs.uk/conditions/periphera...

See Symptoms lists below for other neuro symptoms.

Symptoms of B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

Make sure your GP has a list of all your symptoms especially every neurological symptom.

If you have any neuro symptoms you should be on a B12 loading injection every other day for as long as symptoms continue to improve followed by a jab every 2 months.

Did you get any loading jabs years ago at the start of treatment?

GP can find info on UK treatment for B12 deficiency in their BNF (British National Formulary) book Chapter 9 Section 1.2

BNF info is also available online. See BNF link down page.

If you're in UK, I suggest reading these documents/articles.

UK B12 documents

BSH Cobalamin and Folate Guidelines

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

Maybe take a copy of above document with you to next appointment with relevant bits circled.

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...

Maybe take a copy of above BNF info with you.

BNF guidance on treating b12 deficiency changed recently.

pernicious-anaemia-society....

NICE CKS

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

Link about writing letters to GP if under treated for b12 deficiency with neurological symptoms

b12deficiency.info/b12-writ...

I feel it is more effective to put queries about treatment/diagnoses into a letter to GP.

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

Letters create a paper trail which can be useful if there is cause for complaint in future. Keep copies of any letters written to GP.

PAS

Do you have a PA diagnosis or do you suspect you have PA (Pernicious Anaemia)?

If yes then I suggest you consider joining and talking to PAS (Pernicious Anaemia Society) who should be able to guide you on info to pass to GP.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no [phone] answerphone

PAS support groups in UK

pernicious-anaemia-society....

There are 16 support groups in UK. May be one close to you.

You do not have to have a confirmed diagnosis of PA to go to a support group meeting but you do need to be a PAS member.

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

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

Symptoms Diary

Are you keeping a daily symptoms diary that records how symptoms vary over time and when you receive treatment?

This could be useful evidence of any deterioration in symptoms and symptoms returning before next jab is due, as GP has decided to reduce your injections.

The cynic in me thinks this is likely to be a cost cutting exercise; B12 jabs are cheap but nurses' time to give them is expensive,

I also suspect that you may be an older patient and sadly I feel there is sometimes age prejudice against older patients...They probably won't expect you to fight the decision to reduce your B12 jabs to every 12 weeks.

Be prepared for a fight to get your injections reinstated at every 8 weeks.

It's vital that you get adequate treatment or there is a risk of further deterioration including permanent neurological damage eg damage to the spinal cord. See links below.

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...

If you have neuro symptoms , have you ever been

1) referred to a neurologist?

2) referred to 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 then perhaps you could ask if they could write a letter to local haematologist asking 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 damage from PA, Coeliac , H Pylori infection and other gut conditions.

Seeing a specialist is no guarantee of seeing someone who understands B12 deficiency. I saw multiple specialists and they all missed typical symptoms with the exception of one who thought it was a possibility but still didn't diagnose it.

Dementia

Some people also develop dementia type symptoms if under treated for B12 deficiency.

If this starts to happen to you then be aware that GPs get extra funding for diagnosing dementia which I feel means less incentive to look for treatable conditions such as b12 deficiency that can cause dementia type symptoms.

Dealing with the GP

1) Seek support before tackling GP eg from PAS .

There is a lot of useful info on B12 Deficiency Info website as well.

2) If possible get proof of any prior diagnosis of B12 deficiency or conditions such as PA, Coeliac disease and others that can lead to B12 deficiency before tackling GP eg copy of relevant part of medical records.

Most UK GP surgeries have online access to medical records.

Access to Blood test results (England)

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

Some forum members have had injections stopped when they queried their treatment because GPs could not find a record of their original diagnosis.

3) Consider putting any queries about treatment into letters to GP.

Letters could contain symptoms list, test results, relevant personal and family medical history, extracts from UK documents/articles. requests for referrals

See letter writing link below.

b12deficiency.info/b12-writ...

4) Take someone supportive with you to appointments. Even better if they have read about B12 deficiency, PA etc and understand the national guidelines and can speak up on your behalf.

GPs are sometimes kinder if a witness is present.

5) Other useful links if unhappy with treatment

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/

If you're unable to get recommended level of treatment then your local MP may be interested in your story.

6) If all else fails, some on forum choose to self treat if they can't get the frequency of treatment they need but I feel this is a last resort.

I had to resort to treating myself when all possibilities of getting NHS treatment came to nothing.

Warnings

1) B12 deficiency is not always well understood by GPs and specialists so it pays to be well prepared for any appointments.

I used to be quite deferential to GPs and specialists and respected what they said but years of suffering untreated B12 deficiency despite pleading for treatment and having bad experiences including being shouted at by doctors have cured me of deference.

I am still polite but no longer feel that I can trust everything GPs say.

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...

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-...

4) Some parts of UK are using out of date local guidelines on treatment/diagnosis of B12 deficiency. I suggest tracking down your local area guidelines and comparing them with national guidelines and articles eg BSH, BNF, NICE CKS, BMJ.

I am not medically trained.

I wrote a very detailed reply on another forum thread with links to B12 books, other B12 websites and other B12 info. See Link below.

healthunlocked.com/pasoc/po...

[Kate1914 in reply to Sleepybunny]

Hi,

I have some of the symptoms and the doctor is totally aware of them but I'm still on the 3 month routine.

I have spoken to him and his colleagues on a number of occasions. All have been greeted with a stone wall. In the end I have resorted to purchasing over the net my own supply and use this alongside the NHS provided dose.

I've also suggested they read this and other forums - this they all found to be either an amusing suggestion as they know best or brushed my suggestion away as being of little use.

[Lurcher-lady in reply to Kate1914]

Had exactly the same response from my GP’s tooKate1914. The amused response, I find more upsetting than the stony faced brush aside one. I’m not a stupid person, but they certainly make me feel that way

[Sleepybunny in reply to Kate1914]

Hi Kate1914,

Sorry to read that your GP is not listening to you.

Have you thought about writing a letter to GP?

See letter writing link below.

b12deficiency.info/b12-writ...

"brushed my suggestion away"

They cannot brush away a letter as letters to GP in UK are supposed to be filed with your medical notes. You could include a request in any letter that it is filed with your medical notes.

If you have a PA diagnosis or think you have PA (pernicious Anaemia) then worth joining and talking to PAS (Pernicious Anaemia Society). See PAS info in my first post on this thread.

"I've also suggested they read this and other forums"

What about suggesting to GPs that they could join PAS as associate members?

It's free for them to join.

pernicious-anaemia-society....

Perhaps you could start your own thread on the forum then you'll get more responses.

[Nackapan]

Oh yes plenty of us have.

You can push for at least 2 monthly injections. Check your doctor knows the guidelines have changed.

I personally found my headaches improved getting my vitamin D levels up.

I also take a multivitamin

Drink more water

And eat little and often do blood sugar stay steady.

Hope you find some relief.

I've been plagued by headaches/migraines from just before diagnosis and ever since.

Better than it was though!

[Sleepybunny]

Help for your GP

1) PAS website has section for health professionals that you can refer your GP to.

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

pernicious-anaemia-society....

2) PAS website has section with useful leaflets/articles that PAS members can print off eg

"An Update for Medical Professionals: Diagnosis and Treatment "

"Treatment is for life"

pernicious-anaemia-society....

3) PAS members may be able to arrange for their GP to talk to PAS but would need to discuss this with PAS first.

[Sleepybunny]

Hi,

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. See BNF link in my other post.

"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

Other B12 websites

B12 Deficiency Info website

b12deficiency.info/

B12 Awareness (US website)

b12awareness.org/

B12d.org holds support meetings near Durham, UK

b12d.org/event

Stichting B12 Tekort (Dutch website with English articles)

stichtingb12tekort.nl/weten...

UK B12 Blogs

Martyn Hooper's blog about PA

martynhooper.com/

B12 Deficiency Info blog

b12deficiency.info/blog/