Hi All, my daughter is 10 weeks in from her B12 injection, the doctor has requested a blood test in the next 10 days at my request as I feel she needs this injection sooner than every 12 weeks. Her low mood and mental state seems to worsen after about 8 weeks, if B12 is low could this be causing this? She is 15.
Depression Worse?: Hi All, my daughter... - Pernicious Anaemi...
Depression Worse?
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Dogwalker123
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Hi,
"as I feel she needs this injection sooner than every 12 weeks"
Does she have any neurological symptoms?
Symptoms of B12 Deficiency
pernicious-anaemia-society....
b12deficiency.info/signs-an...
b12d.org/admin/healthcheck/...
cks.nice.org.uk/topics/anae...
Symptoms of Peripheral Neuropathy (damage to peripheral nerves)
nhs.uk/conditions/periphera...
Peripheral neuropathy can be associated with B12 deficiency and sometimes with folate deficiency.
If yes to neuro symptoms, does her GP have a list of all of them?
You could refer the GP to the section on "neurological involvement" in BNF guidance below which specifies
a loading injection every other day for as long as symptoms continue to improve followed by a maintenance injection every 2 months (for those with neuro symptoms)
BNF Hydroxycobalamin
bnf.nice.org.uk/drug/hydrox...
BNF Hydroxycobalamin - Children
bnfc.nice.org.uk/drug/hydro...
GP can find this in their copy of BNF book Chapter 9 Section 1.2
You might also want to draw GPs attention in any letter or conversation to the increased risk of permanent neurological damage such as problems with spinal cord if a patient is under treated.
Neurological Consequences of B12 Deficiency
PAS news item
pernicious-anaemia-society....
PAS article about SACD, sub acute combined degeneration of the spinal cord
pernicious-anaemia-society....
Letters to GPs about B12 deficiency
b12deficiency.info/b12-writ...
Link above has letter templates people can base their own letters on.
Point 1 in above link is about under treatment of b12 deficiency with neuro symptoms.
Letters avoid face to face confrontation with GP and allow patient time to express their concerns effectively.
Best to keep letters as brief, to the point and polite as possible. It's harder to ignore a letter in my opinion.
When a letter is sent to GP, worth including a request that GP practice sends written confirmation to letter writer that they have received letter.
I included a request in letters that a copy of letter was filed with medical notes.
My understanding is that in UK, letters to GPs are supposed to be filed with medical notes so are therefore a record that an issue has been raised.
Useful to have a paper trail in case there is a need for a formal complaint over treatment in future.
Letters could contain relevant test results, date of diagnosis, brief family and personal medical history, extracts from UK B12 documents, requests for referrals to relevant specialists eg neurologists, haematologists, gastro enterologists.
Keep copies of any letters sent or received.
Retention of UK medical records
bma.org.uk/advice-and-suppo...
Don't rely on there being evidence of a past diagnosis of PA (Pernicious Anaemia) or other cause of B12 deficiency in current medical records.
If you get proof of diagnosis eg positive test result/letter from specialist confirming diagnosis etc keep a copy in a safe place.
Accessing Health Records (England)
nhs.uk/using-the-nhs/about-...
england.nhs.uk/contact-us/h...
patients-association.org.uk...
Support
Are you a PAS member? Might be worth joining on behalf of your daughter.
They can offer support and pass on useful info.
PAS (Pernicious Anaemia Society)
Based in Wales, UK.
pernicious-anaemia-society....
There is a helpline number that PAS members can ring.
PAS website has useful articles that you might want to print out for your GP.
pernicious-anaemia-society....
Parents of children with B12 deficiency are not always listened to. See blog post below.
martynhooper.com/2017/07/21...
martynhooper.com/2019/06/04...
Have you found out the local guidelines on B12 deficiency that are being used in your area of UK?
Each CCG/Health Board/NHS Hospital trust will have their own local guidelines on management of B12 deficiency.
Sometimes these local guidelines are not very helpful so worth knowing what you're up against. See blog post below.
b12deficiency.info/blog/202...
It could be that your GP is being constrained by local guidelines in the treatment they can offer your daughter.
Worth comparing the local guidelines with links below.
UK B12 documents
BSH Cobalamin and Folate Guidelines
b-s-h.org.uk/guidelines/gui...
Summary of above document
pernicious-anaemia-society....
BNF Hydroxycobalamin
bnf.nice.org.uk/drug/hydrox...
BNF Children - Hydroxycobalamin
bnfc.nice.org.uk/drug/hydro...
NICE CKS
cks.nice.org.uk/anaemia-b12...
cks.nice.org.uk/topics/anae...
BMJ B12 article
Emphasises need to treat patients who are symptomatic even if their B12 level is within range.
Testing B12 during treatment (PAS article)
pernicious-anaemia-society....
Link about B12 deficiency and Mental Health
b12deficiency.info/b12-and-...
Films about b12 deficiency
I am not medically trained.
You have a wonderful arsenal of knowledge now in Sleepybunny’s response . You must ask the doctor to observe the LATEST protocol on treatment . Testing now is a waste of time . But I can see where this is heading . A test which will be normal , so that your daughter doesn’t need more frequent injections . Her B12 reading must be high fir herb to keep well
Doctors ignorance on P. A has forced me into self-injecting as I could not manage on a 12 weekly injection . , and was just feeling too ill to fight with the doctor .to get more injections.
Best wishes .
Total serum B12 is usually quite a lot higher in children than in adults.
This page is linked from the "Pinned posts - See all" on the RHS of a desktop screen and the bottom of a phone screen:
stichtingb12tekort.nl/engli...
In this article the B12 concentration is expressed in pmol/L.
To convert from pmol/L to ng/L multiply by 1.355
My daughter has recently managed to get her injections changed from 12 weekly to 10 weekly . She asked fir 8 weekly!! Presently I'm on a prescription for 2 weekly.
Hos can and will prescribe a higher frequency if yiu persist
It shoukdnt have to be a battle.
I'm pleased it's on my medical notes I need frequent injections.
I buy it as well .
Never quite trust 'the system' at present.
My gp surgery under new management .
Hi again,
Link about B12 deficiency in children including teenagers
b12deficiency.info/children...
There are blog posts about children, teenagers and young adults with B12 deficiency below.
Some of the stories may have upsetting details.
b12deficiency.info/assets/b...
martynhooper.com/2015/02/10...
I've written some very detailed replies with more B12 info eg more B12 articles, b12 websites, b12 books etc
Blood test won’t determine if she needs more frequent injections, if the mood and mental state worsen after 8 weeks that can mean she needs more frequent injections. Low Vitamin D can have an effect on mood.
Low Iron and Folate can have an impact on your physical health and can therefore have an effect on mental wellbeing.
It’s good to see a mental health specialist such as a Psychiatrist or Psychotherapist in case she may need medication or Therapy which can help greatly.
Hope she feels better soon.
I would ask her Dr if she can have them every two months because she starts to decline after that. That’s the guidelines for neuro symptoms & I do my own but get every 2 months from Dr because I just said that’s the new guidelines.
Lots of really useful info from others, so not much to add, except to ask whether your daughter is tracking her menstrual cycle alongside her b12 injections? Having that information alongside the dates of injections may be useful in identifying a need for more frequent injections with your GP.
On 12 week injections I found that by week 6 I was fading (depression and physical symptoms) which was a whole lot faster when it clashed with my period, especially if it was heavy or painful. Once I was diagnosed and put on regular injections my blood test results always came back "normal", however low I felt. I was put on the pill for unrelated reasons around the same time and my doctor mentioned that it may help with my b12 levels as my periods would be lighter. It made a small difference, but that isn't a recommendation, just an observation. More frequent injections made a much bigger impact.
The two things aren't wholly related, but I have noticed a level of correlation in my own patterns. I'm now self-injecting monthly in between my NHS delivered injections to manage my symptoms. It also means I can identify my PMS from my b12 deficiency, and therefore chocolate cravings from cheese cravings 🙂
Thank you for your reply. With regards to self injecting, where do you even begin, are you medically trained to self inject? She has another set of blood tests soon but literally can ‘crash’ with exhaustion and pain in her arms and can cry a lot. My concern is they don’t up her frequency of injections. She takes iron, vitamin d daily and so I wonder if starting to self inject might be an consideration. Do you have to tell the GP you are self injecting alongside the 12 weekly one? So many questions but we do need answers, thank you.
I'm not medically trained, most of my information came from this site and the very helpful people on it, plus some support from my Mum who had gestational diabetes and injected insulin daily while pregnant. I order b12 ampoules from Germany and syringes from the UK. I inject into my thigh every four weeks (so twice between NHS visits), alternating legs each time. To be honest it still scares me, worse when my levels are low, but it's worth it.
I haven't told my gp I'm self injecting - my new GP withdrew my injections for 12 months because my levels were 'normal', even though the notes on my file state that I should be on treatment for life. When I explained to a different GP that even on 12 weekly injections I was taking b12 supplements s well I was told that I shouldn't be doing that. Having got my injections reinstated I wasn't up to having an argument about it, so I haven't.
I recognise those kinds of crash days, as many others on here will. I really wished I'd had someone I could take with me to speak to my GP to explain the things I couldn't find the words for; your daughter is very lucky to have you to support her.
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