Hi everyone.
We are having a lot trouble getting more B12 injections for my wife despite her feeling that the injections she has received so far have alleviated all her symptoms.
Has anyone tried the oral spray and if so do you have any feedback.
Many thanks.
If injections work that is what she needs.
I tried sprays tablets ect . They dud nothing.
If your wife could absorb she wouldnt need injections in the first place
Perhais ask for a prescription to self inject.
Push for the treatment she needs.
Lots of advice and links if you read through posts or use magnifying glass at the top to put in topic.
The same happened to me a few years ago , and I tried every possible supplement — B12 patches , B12 tablets ,;B12 sublingual lozenges , nose and sub-lingual sprays . In desperation I turned to self -injecting B12 Hydroxocobalamin ( which is used by the NHS) . Hey presto — my symptoms improved no-end . I still have to self -inject weekly to keep well
That said , I read on this forum that some members write that B12 spray does help , so I cannot dismiss it out of hand . So , why not try it ? ( Amazon. Smile , and choose PAS as your charity ) If this fails to improve your wife’s symptoms , then self-injections will certainly do so .
P.A. is a very complicated condition , and we are all different . I’m convinced though that treatment required can depend on how long one has been B12 deficient before treatment is started. With hindsight , now that I know so much more about P.A. , I was deficient for certainly 15 years , before I had injection treatment .
Best wishes .
B12 sprays were totally useless for me.
That's not surprising because the B12 molecule is too large to cross biological membranes. So all the B12 in the spray is swallowed, ending up to be just an oral dose like a tablet.
Hi
I have tried sprays, they didn't work, especially if you have an absorbing issues. I have had more luck with patches as they avoid the stomach, but l need more than the dose they say, especially as gp not giving the B12 injection!
Do not have a pernicious anaemia diagnosis, but still did not get any B12 deficiency symptom relief from the spray. Improvements for me even from B12 injections were very slow though. Plodding on, five years later.
That does not mean that some people won't find it useful.
I think that you should ensure you get a good GP and then stick with them. Not an expert in B12 deficiency (who is ?)- just someone who cares enough to look into this, and notices when their patient is not doing well/ is improving, and has a vested interest in helping someone to get the best results they possibly can.
If this means injections, then perhaps it is time that practices worked out a way to ensure either safe administration for both nurse and their patient (as they are currently doing for flu jabs) or allowing patients/ their partners to learn how to self-inject: if not face-to-face, then by recommended youtube/ smartphone/ zoom. Can then provide helpline where necessary and B12, sharps etc via chemist. No-one learns anything new by doing it once.
Remote, safe, cheaper - and perhaps empowering in terms of symptom control and management. Sounds ideal, doesn't it?
Hi,
Do you mind me asking which country you are in?
If you are in UK...
How many loading doses did she have at start of treatment?
How often will she have injections after loading doses finished?
Does she have any neurological symptoms?
Treatment for those with neuro symptoms is different to those without neuro symptoms.
See next links to UK treatment guidelines.
BSH Cobalamin and Folate Guidelines
b-s-h.org.uk/guidelines/gui...
BNF Hydroxycobalamin
bnf.nice.org.uk/drug/hydrox...
Link about "What to do next" if B12 deficiency suspected or newly diagnosed.
b12deficiency.info/what-to-...
PAS (Pernicious Anaemia Society)
Based in Wales, UK.
pernicious-anaemia-society....
There is a helpline number that PAS members can ring.
Letters to GPs about B12 deficiency
b12deficiency.info/b12-writ...
Point 5 is about under treatment of B12 deficiency with neuro symptoms.
Have a look at my replies in the thread I linked to below which has links to B12 deficiency symptoms lists, causes of B12 deficiency, B12 books, more B12 websites, UK B12 documents and other B12 info including some hints on dealing with unhelpful GPs which might be useful.
healthunlocked.com/pasoc/po...
UK forum members have reported problems getting their B12 jabs during pandemic eg injections have been stopped/delayed/ frequency reduced or swapped for oral tablets.
I left a detailed reply about impact of pandemic on B12 treatment in UK in next link which might be of interest if you're UK based.
healthunlocked.com/pasoc/po.....
I am not medically trained.
Yes we are in the UK.
Originally she had 4/5 injections but the last one was cancelled due to covid.
These seemed to last for a few months before symptoms started again ( fatigue, pins and needles, tinnitus).
She was then due another blood test, her original one saying levels were 192, but seeing as her blood test was 5 weeks away they gave her another booster injection which made her feel better.
Her blood test has now come back with levels of over 1000 so they won't give her more injections despite her symptoms now returning 5 weeks since her last booster.
I have had a prick test to send back to a private clinic tomorrow to try to get her active levels as the NHS don't test for that.
Making matters harder is the fact all we can get at the moment is a phone consultation with her GP so I'm seriously considering getting b12 from Germany and self administrating.
Hi,
if she's symptomatic for B12 deficiency with other causes of symptoms excluded BSH guidelines suggest treatment.
Point 5 in the letters link in above post is about being symptomatic for b12 deficiency with an in range result.
BMJ B12 article
Emphasises need to treat patients who are symptomatic even if their B12 level is within range.
B12 article from Mayo Clinic
ncbi.nlm.nih.gov/pmc/articl...
Table 1 in above article is about frequent misconceptions about B12 deficiency.
Article suggests ....
1) No proof that oral b12 is a good at treating B12 deficiency as B12 injections
2) Many current tests eg serum b12, active B12, MMA, Homocysteine, are not totally effective as diagnostic tests for B12 deficiency.
3) Successful treatment should not be stopped
Will try to add more tomorrow.
So latest update.
I spoke to her GP today who said because her B12 levels are over 1000 and another test shows she has no PA antibodies they can only give her an injection every 3 months.
I argued very vigorously all the points but the GP said because the injections are licensed they cant do anymore and she will have to wait atleast 3-4 months for an appointment to see a Neurologist.
I do have a supply of B12 on the way from Germany but despite reading a number of previous posts I'm still unsure of what type and size of needles and syringes to get in order to self administer.
This whole episode is seriously damaging her mental health as she already suffers from PTSD and Schizoeffective disorder.
Tell the idiot GP that -
a) Half of all people with PA test negative on the antibody test - onlinelibrary.wiley.com/doi... - Page 500
b) The British National Formulary license B12 for administration every 2 to 3 months. It was changed almost two years ago.
Needles depend on the planned route - intramuscular of subcutaneous.
"I argued very vigorously all the points but the GP said because the injections are licensed they cant do anymore"
I suggest you think about putting all the points you argued vigorously into a letter to GP and consider also copying it to practice manager as harder to ignore a letter than info passed on verbally face to face or during telephone conversation.
In UK, letters to GP are supposed to be filed with medical notes so therefore if you write on her behalf there should be a permanent record that the issue was raised in her file.
If your wife has capacity to act on her own behalf, you may need to include her signed written permission to act on her behalf with any letter you write to her GP.
Have a look at this letter writing link which has letter templates people can base own letters on.
Unhappy with Treatment (UK info)?
Letters to GPs about B12 deficiency
b12deficiency.info/b12-writ...
Point 1 in above link is about being under treated for B12 deficiency with neuro symptoms.
Point 5 in above link is about being symptomatic for B12 deficiency with an in range B12 result.
CAB NHS Complaints
citizensadvice.org.uk/healt...
Have you considered talking to your local MP/devolved representative if she is not being treated according to guidelines?
"GP said because the injections are licensed they cant do anymore "
This is not true if you are in UK. GPs are allowed to use their clinical judgement to prescribe off licence if they feel it is in patient's interest. See below.
gmc-uk.org/ethical-guidance...
If your wife has neuro symptoms, see comments below.
In any letter you could ask GP to read Chapter 9 section 1.2 of the BNF book where it is made clear that people with neurological involvement (meaning neurological symptoms) should be on the following pattern...
A B12 loading injection every other day until symptoms stop improving (could be for weeks even months) then an injection every 2 months.
Perhaps include a copy of BNF info with any letter and list of any neuro symptoms.
BNF Hydroxycobalamin
bnf.nice.org.uk/drug/hydrox...
Symptoms of B12 Deficiency
pernicious-anaemia-society....
b12deficiency.info/signs-an...
b12d.org/admin/healthcheck/...
Peripheral Neuropathy
nhs.uk/conditions/periphera...
1) Did your wife have every other day loading injections for several weeks or even months if neuro symptoms present?
If not perhaps you could request in any letter that she is restarted on the loading dose pattern for those with neuro symptoms and list every neuro symptom she has.
You mentioned she only had 4 or 5 loading jabs and also missed one. Six loading doses is the usual pattern for those without neuro symptoms.
Even if she does not have neuro symptoms, BNF states she can have injections every 2 or 3 months after loading doses.
If GP is reluctant to , perhaps you could point out that under treating B12 deficiency could lead to spinal damage; sub acute combined degeneration of the spinal cord.
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.
Blog post from Martyn Hooper's blog, mentions SACD
martynhooper.com/2010/09/21...
I recommend you consider joining and seeking support and info from PAS if not already a PAS member. In some cases they may be able to intervene.
Flowchart from BSH Cobalamin and Folate Guidelines
stichtingb12tekort.nl/weten...
Flowchart outlines a process for diagnosing PA and Antibody Negative PA in UK.
Has her GP followed this flowchart?
Local Guidelines
Each CCG/Health Board in UK has its own local guidelines on treating B12 deficiency. I suggest tracking down guidelines for your part of UK and comparing them with BNF info, BSH guidelines (see link in other post) and NICE CKS link below.
NICE CKS
cks.nice.org.uk/anaemia-b12...
List of CCGs
nhs.uk/servicedirectories/p...
List Health Boards Wales
wales.nhs.uk/ourservices/di...
List Health Boards Scotland
List of LCGs in Northern Ireland
hscboard.hscni.net/local-co...
Some of these local guidelines do not match what is in BSH guidelines etc which may explain why she is struggling to get the treatment she needs.
What are her folate and iron levels like and has she had a recent Full Blood Count (FBC)?
I have read that folate deficiency can lead to mental health issues. See BSH Cobalamin and Folate Guidelines link in other post.
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-...
BNF Folic Acid
bnf.nice.org.uk/drug/folic-...
Iron Studies
labtestsonline.org.uk/tests...
Thyroid
Some forum members on here also have thyroid issues. Has she had thyroid tests?
I suggest that you put thyroid results on Thyroid UK forum on HU.
Thyroid issues can affect mental health.
In UK, GPs often only test TSH which won't give a full picture of thyroid function. There are other tests they can do.
Thyroid tests
thyroiduk.org/getting-a-dia...
Links about B12 and Mental Health
b12deficiency.info/b12-and-...
Neuropsychiatric symptoms of B12 deficiency: not just in the elderly and often without anaemia
(English article from Dutch B12 website; units and reference ranges may vary from those in UK)
stichtingb12tekort.nl/weten...
Blog post about Psychiatric Issues and PA
martynhooper.com/2017/01/22...
Misdiagnosis of B12 deficiency
b12deficiency.info/misdiagn...
These books all mention mental health issues linked to B12 deficiency.
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). BNF info in this book is out of date. See BNF link in this post for up to date 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".
"Vitamin B12 deficiency in Clinical Practice" (subtitle "Doctor, you gave me my life back!" by Dr Joseph Alexander "Chandy" Kayyalackakom and Hugo Minney PhD
Tried telling them about the unreliability of the test, didn't get me anywhere.
Probably will inject into the stomach as that seems easiest
too much b12..?
B12 patches
B12 spray
Mothers B12
DAILY VITAMIN B12 ORAL SPRAY
