Hi everyone x my 15 year old daughter was diagnosed last September. Been a steep learning curve for all of us. Her symptoms come back at 10 weeks. As the next one is due as she starts her GCSEs I’m hoping they will give it to her at 10 weeks.
Can I just ask, does anyone find they pick up loads of viruses? She’s been ill all winter. When I go to doctor and ask if her condition affects her immune system, they say it shouldn’t.
Nice to have others to talk to, it’s been a worrying time.
Sounds like a tough time. You can get 2 monthly b12 injections if needed with guidelines the gps have. So there shouldn't be any reason for your daughter not to have her injection in time for her Gcses. Does she have a multi vit or plenty of vitamin C and b's in her food to boost her immune system. Fatigue doesn't help. Also her age and exam preparation won't as stressful. All of ours worst enemy. Hope you can get her frequency of injections sorted . I wish her well with her exams. She can only do her best. I wish her well
Yes, don’t think stress helps. She also suffers from anxiety but now not sure if this is down to neurological symptoms caused by b12 deficiency. It’s a mine field, with little help from professionals.
The link to guidelines mentioned by Nackapan
bnf.nice.org.uk/drug/hydrox...
Can you ask to have your daughter's folate and iron levels checked?
I am not a medically trained person and I wish you both well.
yes, being B12 deficient does affect the immune system and frequent infections are a symptom of B12 deficiency - however, if her B12 is being treated correctly then her immune system shouldn't be affected as she will have enough B12.
Suggest that you keep a diary of symptoms to see if there is a correlation between viruses and injections.
The BNF guidelines are ow for B12 injections every 2-3 months so try referring her GP to that and get the frequency increased to match the return of symptoms if you can.
Thanks for your help. I’ve been keeping a diary of symptoms as she also has nights of extreme nausea and tummy issues. We go to consultant in May and I have many questions. Help and advice when diagnosed was zero. Just seem to leave you to it. Sadly.
My daughter is same age and was permanently ill with viruses etc for a year before diagnosis but since being on injections only the odd cold like anyone else.
She now has injections every 6 weeks as symptoms returned after 2 months and is much better.
Is your daughter under a paediatrician or just under her GP? I would push for more frequent injections especially as she is doing her GCSEs - its a stressful time enough without feeling unecessarily ill on top.
Hope the exams go well.
Will push for every 9/10 weeks I think. Poor girl is so fed up with being ill. Thanks for your help.
Hi,
I am not medically trained.
Have you considered joining and talking to PAS (Pernicious Anaemia Society)?
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....
PAS members can access useful articles such as
"An Update for Medical Professionals: Diagnosis and Treatment"
"Juvenile Pernicious Anaemia Information for Parents"
Parents of children with PA can sometimes be misunderstood by GPs which is why it may be helpful to have support from PAS. See blog post below.
martynhooper.com/2017/07/21...
May also be worth getting proof of her PA diagnosis eg copy of test results/specialist's letter in case of future need.
B12 Deficiency Info website
UK B12 Blogs
There are stories on these about young people with PA and other causes of B12 deficiency.
Martyn Hooper's blog about PA
B12 Deficiency Info blog
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...
BMJ B12 article
BNF (British National Formulary)
bnf.nice.org.uk/drug/hydrox...
Your GP may not know BNF guidance has changed recently.
pernicious-anaemia-society....
There is a separate BNF for 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 is up to date with most UK b12 guidelines but 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".
"I’m hoping they will give it to her at 10 weeks."
If your daughter has any neuro symptoms eg tingling, pins and needles, brainfog, numbness, tinnitus, tremors, balance problems, memory problems, word finding difficulties, migraine etc then my understanding is that she should be on following pattern of treatment....
A B12 loading jab every other day for as long as symptoms get better (could mean loading jabs for weeks even months) then a jab every 2 months
This applies whether she is being treated as an adult or child and whatever the cause of the B12 deficiency.
If no neuro symptoms are present then recommended UK treatment is
For adult
6 B12 loading jabs over 2 weeks followed by a jab every 2 or 3 months
For child
A B12 loading jab every other day for 1 to 2 weeks then a jab once a week until blood count shows normal results then a jab every 2 or 3 months
How many loading jabs did she have at start of treatment?
Some UK GPs are unaware that patients with neuro symptoms are supposed to have more intensive treatment.
Correct level of treatment is vital or the risk of permanent neurological damage increases.
Unhappy with Treatment (UK info)?
Letters to GPs about B12 deficiency
b12deficiency.info/b12-writ...
Point 1 is about under treatment of B12 deficiency with neuro symptoms.
CAB NHS Complaints
citizensadvice.org.uk/healt...
HDA patient care trust
UK charity that offers free second opinions on medical diagnoses and medical treatment.
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...
PA is an auto-immune disease. Having one auto-immune condition can mean an increased risk of others developing.
Has GP excluded possibility of other conditions eg
Thyroid problems?
in UK, GPs often only test TSH which won't give a full picture of thyroid function. Suggest putting any thyroid results on Thyroid UK forum on HU. Many on PAS forum also have thyroid issues.
thyroiduk.org/tuk/testing/t...
thyroiduk.org/tuk/testing/i...
Thyroid Uk website
Coeliac disease?
NICE guidelines Coeliac Disease (2015 version)
nice.org.uk/guidance/ng20/c...
More b12 info in pinned posts on forum. I have written other more detailed replies which may be worth searching for.
The most important thing I learned was to always get copies of any blood test results. I learned to do this after being told everything was fine/normal and then finding abnormal and borderline results on the copies. Some UK GP surgeries have online access to a summary of results/records.
Wow x thank you so much for the information. It’s so kind of you to take the time to do this for us. I will take your advice and read up. She goes back to consultant in May so will feel better prepared to ask what I need to. Pity they didn’t provide even a leaflet to read. We’ve been completely in the dark. Thank you so much.
She had 3 jabs a week for 2 weeks then injection every 3 months.
She appears to have been given adult UK B12 treatment pattern for those without any neuro symptoms. See BNF, NICE CKS and BSH links for more info on UK B12 treatment.
Does she have any neuro symptoms now or did she have any neuro symptoms before treatment started?
If yes to neuro symptoms before or now then my understanding of current UK B12 guidelines is that she is not on recommended treatment pattern.
Link about writing letters to GP if under treated for b12 deficiency with neuro symptoms.
b12deficiency.info/b12-writ...
Local Guidelines
Some UK areas are using outdated local guidelines for b12 deficiency. May be worth tracking down local guidelines and then comparing them with national guidelines.
For many (most?) people with PA it takes a lot less to knock us over than it did when we were healthy. So I'm fine with long periods of moderate exercise (walking the dogs for 90 minutes) but a short burst of extra effort (moving a sofa) means I need to sit down for 10 minutes after.
It's the same with infections. I don't think I have more - it's just that a minor infection has much more of an effect than it used to.
"Pity they didn’t provide even a leaflet to read"
PAS has plenty of leaflets. Access to PAS members only.
pernicious-anaemia-society....
"I will take your advice and read up"
Sadly B12 deficiency is not always as well understood as it could be by GPs and specialists so good idea to be well prepared for any appointments.
"She goes back to consultant in May"
If you feel she is being under treated, especially if neuro symptoms are present, I suggest seeking support from PAS as soon as possible.
Warning - links below may be upsetting to read.
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...
Help for GPs/specialists
1) PAS website has section for health professionals, they can join PAS for free.
pernicious-anaemia-society....
2) I gave my GPs a copy of "What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
3) GP/specialist may be interested in this PAS news item about a B12 conference in Manchester.
pernicious-anaemia-society....
"When I go to doctor and ask if her condition affects her immune system, they say it shouldn’t."
B12 is needed by every cell in the body so B12 deficiency can affect many body systems. I have far fewer infections since I started B12 treatment, I used to have constant fungal infections.
Folic Acid….need new advice/nice guidelines
Please monitor Iron and others while being treated b12
Very low B12, what other tests should be asked for?
Update on other half!!!!
