So was so hopeful before Christmas when daughters Doc suddenly px'd B12 loading doses and referred to Alder Hey for further investigations to cover all bases. After 6 th jab end December was told she would have to wait till end of March for next jab. I had contacted surgery Monday to ask if her next dose could be brought forward Doc was unavailable so admin said they would pass request to Doc. Called this afternoon and asked if daughters Dr had got back with answer to my request. Daughter B12 def, had 6 loading doses over the christmas period, then told she would need to wait till end of March. Well not sure who answered but disappointed if it was prescribing Doc. Response was no , she can't have anymore before March, she had the maximum allowed and must wait. She would be overdosed , she has never heard of every other day jabs, that would be dangerous. I said I hadn't asked for every other day, but she is so fatigued, brain fog , aches and pains , nauseous, can't get a proper sleep, has only attended school a couple of days since Christmas break. Apparently if she is still having symptoms that can't possibly be the B12, it must be something else and they'll need to look into it. She has had several appointments at Alder Hey, US, MRI, CT more bloods, Consultant at Alder Hey had asked that we ask GP for some hypnotics and possibly anxiety meds but they don't want to do that either. Told for any other discussion she will need to come in and be seen. This is a 15 nearly 16 year old who has missed so much school due to this and spinal op and anxiety/autism that should be doing GCSE's in a few months FURIOUS
Fuming, daughter so ill : So was so... - Pernicious Anaemi...
Fuming, daughter so ill
Get that appointment to discuss face to face with s doctor.Was there any improvement in her symptoms with loading doses ?.
I feel for you as i also had to support a daughter through all of this .
Good she's had hospital tests .
They need to liaise ,communicate !
Should be on a letter to G.p .
Not a great deal of improvement, she was a little brighter, could have just been because she was off school , less stress, she did mention after 3rd or 4th that she was suddenly having strange she described it at as prickly/painful burning pins and needles in feet and hands, but it faded after and she seems to be back to square one. It is bad enough isn't it having to go through it yourself but it is breaking me seeing her like this.
I really feel for you . It’s even kept me awake this night , wondering what I could say to be helpful . It’s terrible when you are faced with such ignorance and your daughter is suffering so much . I know that I woukd be tempted to inject B12 and be damned . Inwoul use the sun-cutaneous method , which is less intimidating . It’s more slowly absorbed and would not act so quickly .
I realise that i will probably be heavily. criticised for this suggestion, and maybe this post will be removed for suggesting this . You could possibly get your daughter to actually give herself the injection with a very fine short needle ( 30 G x 6 mm , obtainable from Amazon.co.uk )
I anticipate terrible howls of disapproval . But I honestly have thought a lot about it during the night . You must be feeling so desperate. If you are shocked and horrified by my suggestion , I apologise hugely I honestly mean well . With very best wishes .
I totally agree Wedgwood I would be the same. The benefit would outweigh the potential risk ….. as b12 is deficient and the protocol is every other day until improvement. The Doctors need to improve their knowledge and a letter should be sent requesting they refer to the Nice Guidelines.
I SI GP surgery know this, I spent 28 years giving IM/sub-cute , even offered /asked to have px and give her the jabs as it was Christmas , they gave a definitive NO, they would be sphincter fluttering over litigation, safeguarding , insurance etc etc but it's the lack of honesty and candour that twists my melons. I have the supplies to be able to administer, but it's the legal/moral /ethical issues swimming round my head too. My NMC registration is no longer active, so they as far as I am aware they can't threaten me with removal from the register. I wouldn't however put it past them to try and involve social services and cite my "poisoning" her or even try to say it is Munchausen's by proxy. Sounds paranoid I know but have seen so much underhanded , less than professional , going against code of conduct behaviours in my life, probably why my 28 years in NHS ended abruptly, I won't , no can't keep my mouth shut. I was never one to litigate but they are not helping me keep to that way of thinking. I am trying to stick to the rules but I will not let them destroy her like they have done to so many of us. Thank You for being here , lots of scanning and printing to do and finding out who's arse to start kicking. We would all be lost I fear without this forum ❤️
No wedgewood,
I do not disapprove in the slightest but agree with you. I had a brain fog moment and whilst writing out the meaning realised the words were ‘Gillick’s competence.’
This is usually around contraception but I feel applicable to any area of medicine. Where a ‘child’ someone who is aged 14 or 15 but with a lengthy discussion, it is established that they are sensible, understand implications and have the clarity of mind to make their own decisions. Polo22 is a qualified Health Professional.
The SI discussion is between Polo22 and her daughter. With regards to safeguarding what is Polo22 protecting her daughter from ? Safeguarding is protecting a citizen's health, wellbeing and human rights; enabling them to live free from harm, abuse and neglect.
The legal/moral /ethical issues can be addressed in a conversation with Polo22 and her daughter.
😘
i wont criticise you .. . . . . . The NHS is on its knee's and near every GP surgery is on its knee's so little chance of more jabs than the recommend 13 weeks. . . . . . We all have to understand that while B12 is cheap staff time and staff pay is not cheap or plentiful. . . . . I cannot begin to understand the strees of having a child in trouble and not being seen to but it is the reality of where they find themselves . . . . . Not so long ago I was ignored in NHS land . . . . . I did not know before I moved that I'd be making such a beneficial decision. . . . . . Yet I dont expect our HSE to provide jabs every day or two. . . . . . In many places it is absolutely the norm to SI or family member and it would be nice to have a professional instruct us but alas not a chance so we are left with little alternative but youtube how to do and grit your teeth. . . . . Alcohol the site well . . . . . . Fast in and slow on the plunger. . . . . . The alcohol numbs the skin also
I have administered IM and Sub-cut injections for over 30 years , I self inject myself. I asked for a PX and sharps box and was more than happy to deliver the jabs myself. They refused , stating they couldn't be sure of my competency, I do expect the NHS to comply with their own guidelines that have been laid down following usually long protracted research and development , and passed by many committees before getting to the publishing stage. It would never get to guidelines stage if it was not proven to be beneficial and cost effective, rafts of penny pinching bean counters are employed to avoid wasteful expenditure at all costs, so yes I do expect the appropriate treatment to be administered to my daughter.
Tried can't get appointment, tried again today, no chance . Beyond Peeved.
Does your surgery operate on early phone call emergency same day appointments ?Say emergency same day needed .
If not call out of surgery hours to se any doctor ?
Or a telephone consult?
Private G.p ?
I have been in your situation .
With one daughter .
Not with thr injecting though as finally when her b12 was done . B12 I jections stated immediately.
Also have been so tempted to inject my 94 year old mother .
Haven't as now persuaded her G.p for hef to get 8 weekly b12 injections.
I have however been in the position to do 10 days of sc anti coagulation injections on that daughter recently.
No instruction .
She was just sent home with them from hospital!!!
Asked me to do them.
Ridiculous they make do much fuss about self injecting B12 but it's off licence to do so
I hope you do get that appointment very soon.
can't get an appointment for her. This morning eventually got through, specifically asked for a Dr's appointment. Usual why, what for, what shoe size, inside leg, 😬😬😡. Told one in 5 mins or one at 10.am. Chose the 10.am, then she confirms, " so that's 10 a.m. with a nurse practitioner" No I said , she needs to see a Dr, well she can't , you can have a nurse practitioner, told her no thanks , let's not bother, had to hang up before I swore at her. If it was a simple, routine situation I wouldn't have a problem with nurse, but when the Dr doesn't understand, when they are doing the absolute bare minimum allowed, when they haven't followed guidelines and referred to haematology they can bugger off.
Oh Polo22,
I am so very sorry to read. It is so difficult to see your child poorly.
Good she is having more tests. This silly nonsense of overdosing and Hydroxycobalamin is dangerous. Ask the GP to produce the Medical Evidence stating that.
I do hope your daughter’s school is supportive and she has lovely friends. Would you consider seeing a private dietician ? They understand biochemistry and is more patient centred.
😞
Yes initially I was surprised and hopeful that she was getting the right treatment, the Dr who px'd the B12 injections etc had referred to Alder Hey for further investigations to try and cover all bases. Unfortunately this seems to have been less than helpful. No one seems to have the sense they were born with. She has had tests to rule out things, PCOS , structural anatomy issues , brain. lesions , tumour but Hospital are not joining the dots , same as GP. Hospital says oh she's having treatment for B12 deficiency from GP so we won't look into that. I need to get links to all the relevant guidelines and find out a way of or who to direct info at that will bear fruit. Going to head of to a zoom assessment for her ASD pathway, hate zoom,
It does sound like your GP surgery is completely insufficient to cope with your daughter's test and treatment needs and you should probably find a new GP surgery at some point but in the meantime you need to get things moving , and a change of surgery right now could cause more delays.It would probably be better to contact the team whom are testing her at Alder Hey bring up the B12 issue with them , ask what their treatment recommendations are and ask them to write a letter requesting that your daughter is given that treatment.
Ask to be copied in on that letter so that you have the evidence to show the GP if they resist or delay beginning treatment.
Did your daughter have the tests for Crohn's , Coeliac , Ulcerative Colitis , Irritable Bowel Disease, Epstein Barr when she was at Alder Hey or has the surgery done the blood tests for these? If not , they do need doing to rule out these issues as a cause of if her B12 Deficiency. Request the tests.
If these tests were negative , did they do Thyroid blood tests , MMA , Intrinsic Factor / PA antibodies or suggest a referral to Endocrinology for pancreatic enzyme testing ?
This would be a sensible step in case your daughter's issues are being caused by a metabolic or functional issue. You can again request these tests.
Also request either Alder Hey or the GP surgery to refer your daughter to the NHS Dietitian. There can be some delay in appointments but they are invaluable at getting tests done that your GP and often Gastroenterology won't immediately do like stool tests and tests for things like food intolerances and SIBO.
They can basically insist your GP does the tests or they send you to the appropriate centre , they can also recommend appropriate treatments for nutritional deficiency issues.
After your daughter finished her loading doses did the GP surgery or hospital recommend that your daughter continued taking oral B12 supplements until her next injection in March?
If not they should have done.
It would be proactive to request for either Alder Hey or the GP surgery to actually look up the NICE and NHS Trust recommendations for treating B12 Deficiency in Children because they will see what protocol they should be following and that their opinion about potentially causing an overdose is wrong. Point out to Alder Hey that apart from loading doses your GP is doing nothing to diagnose the cause of the B12 Deficiency and are not knowledgeable about the treatment.
It would be a good idea to do a bit of research on the local protocol yourself too so that you can pull them up if they make a mistake you can find this out by putting " B12 Deficiency Treatment for Children NHS .....( The name of your Trust area).
It is probably better to know what the treatment system is rather than requesting monthly or weekly injections which they do not give and wouldn't agree to.
But knowing the root cause of the symptoms and B12 Deficiency is obviously your priority.
If she us also suffering from Chronic Fatigue and Pain it would also be a good step to request a referral to the Chronic Fatigue and Pain Clinic for an initial consultation with the multidisciplinary team if a Consultant, Physiotherapist and Psychologist to get onto a Chronic Fatigue/ Pain course.
The course in itself is an invaluable learning tool , but again during that initial consultation those professionals can also spot any areas of investigation of the causes of your daughter's symptoms aren't being dealt with and can request your GP to do those tests or referrals.
I know you are fuming but it would be a good plan to try to remain polite , calm but firm and it helps if you speak to them to write down what you need to ask for , stick to a script and tick off each item and if things are not progressing only then say that you would like them to reconsider or to have an appointment for a second opinion with a new doctor or you will be forced to make a complaint with the Local Health Board ( or in the case of the hospital the CEOs office).
Lastly, if your daughter is in her mid teens and has begun her monthly cycle it may even be better for her to be checked and treated as an adult rather than a full juvenile.
Hope things improve for you soon, please keep us updated , take care , Bee
they haven't done any other tests, no referral to haematology , no attempt to identify cause of problems. No suggestion to supplement , NADA. My poor printer doesn't know what's happened, going to try to stay calm, gather the bullets and go both barrels on them. It's her 16th Birthday on Friday , she shouldn't be having to put up with this.
Your GP is way out of his/her depth. The advice that ' if she is still having symptoms that can't possibly be the B12, it must be something else and they'll need to look into it' shows a woeful lack of knowledge. Coupled with the fact that they state you can overdose on B12 makes me think you will never get the treatment your daughter needs from them.
You could change GP but the chances you will get one that understands PA/B12D is very unlikely. Surely this is the time to forget the medical professionals and take matters into your own hands ie SI?
She is a minor
Yes she is …. Which makes us cautious….. but as such needs an informed adult to advocate for her. We all know b12 deficiency can lead to permanent neurological damage
So true !Here in Scotland, basically a child of any age has capacity to give consent to treatment , provided that under age 16, a doctor agrees they are able to understand.
I think this shows, what we already all know, that most minors are capable of understanding medical matters when carefully explained to them.
Wall to wall nonsense. Seek out medical professionals equipped with a third brain cell.
Hi,
Apologies if I repeat info I've posted on your other threads.
Just wondered if you'd sought support from PAS (Pernicious Anaemia Society) and B12info.com
PAS (Pernicious Anaemia Society)
pernicious-anaemia-society....
PAS membership is separate to membership of this forum.
Parents sometimes join on behalf of children.
pernicious-anaemia-society....
PAS Contact Details
pernicious-anaemia-society....
If you join PAS you can access useful leaflets which might be worth passing to GP. Some can be viewed by non-members.
pernicious-anaemia-society....
In past it was possible to arrange for GP to talk to PAS. Not sure if this still happens. Contact PAS if interested.
B12info.com
The person who runs the above website is a UK campaigner on B12 deficiency issues.
She has supported some forum members.
Some of her blog posts mention children.
b12info.com/category/children/
"she had the maximum allowed and must wait. She would be overdosed , she has never heard of every other day jabs, that would be dangerous"
I think that sadly if that was a GP answering they are lacking knowledge about B12 deficiency and don't know what's in the BNFC and BNF.
The BNFC (British National formulary for children) outlines every other day jabs for those with neuro symptoms. See section on Indications and Doses. Maybe you could show this to GP.
bnfc.nice.org.uk/drugs/hydr...
So does the BNF (for adults).
bnf.nice.org.uk/drugs/hydro...
Depending on her stage of physical development she may be put on an adult treatment pattern.
Wrong ideas about B12 deficiency
Misconceptions about a B12 deficiency
(From Dutch B12 website - units, ref ranges, treatment patterns may vary from UK)
stichtingb12tekort.nl/engli...
Diagnosis and Treatment Pitfalls(From B12 Institute in Netherlands - units, ref ranges, treatment patterns may vary from UK)
b12-institute.nl/en/diagnos...
Unhappy with Treatment (UK info)?
How to write letters to GPs about B12 deficiency
Some of the points in link below mention children.
b12deficiency.info/b12-writ...
Thread about Patient Safety, has useful links for those in UK having difficult health experiences with B12 deficiency.
Info is aimed at adults.
healthunlocked.com/pasoc/po...
Help for GP
Maybe worth pointing these out to her GP/specialists.
1) PAS website has a page for health professionals.
They can join PAS as affiliate members, no charge.
pernicious-anaemia-society....
2) Has your GP heard about Club B12?
It's a group of doctors and researchers who are looking into B12.
They have regular zoom meetings and have hosted a conference.
3) Good articles to pass to GP
From Mayo Clinic, US
pubmed.ncbi.nlm.nih.gov/311...
The Many Faces of Cobalamin (Vitamin B12) Deficiency
Bruce H R Wolffenbuttel 1, Hanneke J C M Wouters 1 2, M Rebecca Heiner-Fokkema 3, Melanie M van der Klauw 1
Affiliations expand
PMID: 31193945 PMCID: PMC6543499 DOI: 10.1016/j.mayocpiqo.2019.03.002
Free PMC article
Recent BMJ article about B12 deficiency by B. Wolffenbuttel
In my personal opinion, he's one of the few doctors who understand B12 deficiency.
bmj.com/content/383/bmj-202...
Vitamin B12
BMJ 2023; 383 doi: doi.org/10.1136/bmj-2022-07... (Published 20 November 2023)
Cite this as: BMJ 2023;383:e071725
The author of above also wrote an article for PAS in Jan 2024.
Only One Chance
pernicious-anaemia-society....
There was another mother posting about her young daughter recently on thread below.
healthunlocked.com/pasoc/po...
Some forum members have been to a private iron clinic in East of England which has knowledge of B12 deficiency. I don't know if they see adolescents. Maybe one of these members will see your thread and send you a PM with more details.
Lots of B12 info in pinned post "Various PA/B12D resources".
I'm not medically trained just someone who suffered for many years from unrecognised and untreated B12 deficiency.
Thanks for this, feeling overwhelmed with everything right now. So much going on and spread far too thinly. Will look into all the links after tea and sandwich. Just spent 2 1/2 hours on a zoom ASD assessment with her.
I’m so sorry your daughter is so sick. I have to say, this sounds identical to my own experience. I ended up having to go private to get a 6th dosage as the practice would only offer 5! On what medical evidence I have no idea (I believe it was more a financial decision).
It may take a while for your daughter to feel better. For me, after 6 injections, it took around 6 weeks before most of the nerve pain went away.
I don’t think you mentioned how this came about? Was it sudden via an infection or a slow deterioration? If the first, I may have some additional advice.
Yes, it simply boils down to money Hatwindowwindow4,
Polo22 does mention their financial situation.
Things have been difficult for her for a while, she has been having various issues that weren't being addressed. No one wanted to take lead on anything, so as per Mummy dearest had to throw her dummy out of the pram and demand bloods etc.
Your furious, so am I to read your post.
For a start B12 is neither toxic or can you overdose on it. These Drs need ruddy good shake up on how to treat the condition. As for your daughter's mental health have any of these Dr's or Consultants remotely considered......
Learning and behavioral disabilities and autism spectrum disorders have multiple causes, and B 12 deficiency is only 1 piece of the puzzle. Yet it is often overlooked. In fact, it is easily treated and certainly preventable.......
ncbi.nlm.nih.gov/pmc/articl...
If your daughter was treated correctly I doubt very much if she would need anxiety meds. Has anybody thought of investigating why she is deficient ? She could have an absorbtion problem for all they know !
The poor girl has had spinal surgery have they looked to see if there is any subcute combined degeneration ?............
ncbi.nlm.nih.gov/books/NBK5...
It sounds like your dealing with imbaciles and now desperately in need of finding a clinician who knows how to treat a B12 deficiency. Here is a link to the guide lines........... nice.org.uk/guidance/gid-ng...
Maybe you need to confront your surgery manager.
I have taken a look at Alder Hey Hospitals child and Adolescent service, is there not a consultant you can contact to raise your concerns about your daughter ? They most certainly need educating, I think I would be asking to see their protocol for the treatment of B12 deficiency. Unfortunately we have to be insistent that the 3 monthly ( one cap fits all regime ) does not suit and you will be holding them responsible for her decline. Try writing here to highlight your concerns, if need be attach the links iv'e sent. Raise awarness of your daughters plight of the lack of care and treatment...... media@alderhey.nhs.uk
I can only imagine how heart breaking this must be for you. 💐
I personally would avoid injecting her untill she is considered old enough to have capacity I am not sure if thast is sixteen or eighteen, the consequencys to both of you if she felt intimadated by a doctor or teacher and talked could be devistating. I think a long letter to the surgery complaining about the GPs lack of knowledge and failure to adhere to guidlines would be a first step. I have a couple of autistic teenagers. I have just persauded the surgery to take my elders B12. My younger boy was really depressed for a long time but has got loads better since I started giving him loads of vitamin D. I am sure he is hypothroid but tests have not been positive. Itis horrible having to not just worry about your Kids health but to hvae battle a system aswell that is supposed to care but is more about making drug companys profit.
thyroid uk have a list of more thyroid freindly doctors both private and NHS. I presume PAS does not have one for B12 It would be great if one was started.In the mean time why not put up a separate post asking for recommendations for more helpful doctors in your area.
Write a complain to GP with the links to Nice guidelines and BMA nov 2023 guidelines on B12 where it advises docs to I ject every other day till neurological symptoms get better or no further improvement. Point out that B12 is water soluble vitamin and u can't OD on it, excess leaves the body in Yr urine. Join the B12/PA group on FB for docs, advice and links.
as I understand it, it is impossible to overdose on B12. What the body doesn’t require will be wee’d out. I understand your fury, your poor girl is being made to suffer at a pivotal time in her life.
If you think B12 would help her, I’d be tempted to go for every other day meantime. The only danger there is that if the B12 levels are sky high, they could threaten to remove her jabs. The levels by right should not be tested once B12 had been injected but sadly there are still cases where this has occurred. Good Luck.
Hi again,
Alder Hey hospital is part of the Cheshire and Merseyside ICS (Integrated Care System).
I think the document below is the relevant B12 deficiency guidelines for Adults for your area but please check for yourself.
panmerseyapc.nhs.uk/media/2...
I wondered if it might be worth submitting a FOI (Freedom of Information) request to Cheshire and Merseyside asking which B12 deficiency guidelines they refer to when treating children and young persons with B12 deficiency and ask for a link to or copy of the guidelines.
If you put Freedom of Information in search box on their website it should take you to a page explaining the process.
Alder Hey children's hospital may have its own B12 deficiency guidelines.
You could submit a similar FOI request to Alder Hey
Being an assertive parent who asks questions can irritate management.
I'm going to have so much reading and homework to do, but sometimes it needs to be done. Yes irritating, bit like Thrush, but I'm not so easily dealt with 🤣, I used to have a manager who I gave the nickname of Thrush to, nearly resulted in a colleague choking to death on their fish and chips when they asked why I called her that "really irritating like Thrush but easily dealt with" 🤭
In the Netherlands we have a few clinics for diagnosis and treatment of vitamin B12. Many people have benefited from going there. Also people from other countries.
A word of caution. However now the insurance companies, who are part of the Dutch healthcare system , who pay for the diagnostic tests and treatments are unwilling to continue to do so. They say they are investigating these clinics, they are calling the doctors quacks playing on poor sick people.
This was to be expected, but it is a real shame that insurance companies are now going to put a stop to all this ✋🏻. Vitamins, especially vitamin B12, and minerals can do much more than to simply keep lives going, they can even bring about healing in many cases. So that should always be the first step in treating symptoms! I don't think enough money is being generated when people are now visiting these b12 clinics first , they no longer want to be referred to various specialists to have their various symptoms investigated individually. Repeatedly having X-ray’s, MRI scans, blood tests etc done for every single symptom. That creates a good income for these specialists, they benefit from these B12 clinics to be closed or even from referrals and treatments no longer being partly paid for by insurance companies.
The B12 clinics themselves are partly to blame for this as well, the clinics themselves looks a bit old and shabby , as you can read in a number of reviews in 2023. Many doctors there may have become less enthusiastic about giving the same old good medical advise over and over again, they diagnose and quickly give their patients the injections and they are now being held accountable for this. It has become a kind of assembly line. After the diagnosis procedures have been carried out, the treatment is in fact the same for most patients. These B12 clinics would benefit from revamping their treatment areas and their treatment system, perhaps having the diagnosis done by doctors and then the treatment and aftercare done by well-trained nurses. Maybe that is already the case?! I hope so. I hope they are here to stay as a first port of call.
It’s always money that sets the rules of the game. In this case the treatment for B12 deficiency. I always believed healthcare would prefer preventative treatments first and foremost, it apparently doesn’t when it reduces income for specialists in the healthcare.
I wish there were B12 clinics in UK.
You can make an appointment there, there are waiting list I have been told however they do treat people from outside the eu.
also b12kliniek.com/
Nature Provides Vitamin B12 Liquid Drops 3000 mcg Methylcobalamin + Adenosylcobalamin may offer some relief while you work with those in the medical field to try and get treatment that is acceptable.
My symptoms were less severe when I used this product three times a day.
Some with state a personal opinion with authority sublingual is the same as oral. Some also state they know the size of the molecule prevents absorption.
I am sorry the medical is failing you and your daughter.
Get a copy of any blood tests so you can see and prove the levels. Definitely cannot overdose on B12. Go on to the NICE website and download a copy of the guidelines for treating PA and there is clearly states EOD injections in specific cases where neuropathy presents where no dietary reason is found. Do get a face to face appt as soon as you are able. This treatment (or lack of treatment) for your daughter is heartrending. I hope you get some progress soon. Don't forget to come on here as often as you need, always help here and suggestions and support.
There was someone on forum in past who said they responded well to high strength B12 nasal drops.
Bad memory day so can't remember who it was.
Some forum members manage with high strength oral B12 eg 1000mcg or higher but this doesn't work for everyone. Didn't for me.
You might consider printing out an article from a medical journal and providing it to the doctor. For example
"The Many Faces of Cobalamin (Vitamin B12) Deficiency"
ncbi.nlm.nih.gov/pmc/articl...
The article was published in the Mayo Clinic Proceedings, a peer-reviewed medical journal.
This particular article:
* contains a listing of things commonly misunderstood by doctors
* Contains a description of treatment for B12 deficiency with neurological symptoms
* contains description of procedure doctors should follow when symptoms indicate B12 deficiency, but the doctor is unsure (two-three month trial run of B12 injections weekly or twice a week, and why wouldn't a person choose twice a week when the goal is to see if there is improvement with treatment, rather than improvement with under treatment)
* etc
Another article by the same first author as "The Many Faces of Cobalamin (Vitamin B 12) Deficiency". This is a brief review article intended for physicians:
bmj.com/content/383/bmj-202...
A notable quote from the article:
"Self-administration of intramuscular B12 injections can lead to greater patient satisfaction and better health outcomes."
I hope things really get better for you. Being in Wales myself, I have been sent to Liverpool hospitals on a couple of occasions for investigations. Once to the tropical diseases as they couldn't find out what was wrong with me in Wales, the other was to Walton as they thought I had MS. All that was wrong with me was vitamin B12 deficiency, but though I have been tested, and found to be low, but not low enough, due to me taking B12 sublingually. Nothing further has been done. They know I self inject B12 twice a week. But nothing is said. I do not need to see doctors for anything these days, and I've been self injecting for nearly six years and never felt better.
Ask to be referred to an actual haematologist at Alder Hey. Make the appointment for her to be seen with the GP.
I do think the GP funding 'market system ' is now coming apart at the seams. Surely if the hospital specialist says to do something, the GP can't say no?
Dear polo22, I understand, and most if not all on this forum do. I gave up on my docs and had to research and then go find me some B12. I use Methylcobalamin and I'm still doing a bit of experimenting to see just how many and how much I need per week, etc. I know if it was my child I would take no nonsense of their stupidity and lack of education about B12 and PA. I'm sure you are the same with your daughter as well. We're always here if you need someone to consult with. I'm not a Dr. of course, I know a little about this stuff and some on here know far more than I do. Good luck and let us know how things go. MJat.
I know this may not be an option for you and maybe the cost could set u back … but u can get B12 injections in beauty salons nowadays that only cost £20 - £25 my mum currently pays £25 every 2 weeks and it has completely diminished her fibro symptoms and she’s basically a new woman!!
I self inject, so have the supplies needed, glad your Mum is feeling better though 👍
Hi,
I hope the doctors are finally listening to you.
NICE document which I thought might be of interest.
"Suspected neurological conditions: recognition and referral Recommendations for children aged under 16"
A little success & perhaps one doctor might just read into this debilitating condition
Gp wants to see me to 'review' my injections..
Headaches and exhaustion after B12 jabs.
So deflated and confused 
