Hi! Hope you are all doing well. I am a 35 year old mum of two. Started getting burning sensations and stabbing nerve pain in my fingers, legs and feet a few months ago. I went in for tests and my B12 and iron levels were low. They put me on loading doses for 2 weeks. I felt really bad after each injection. Had nerve pain in my tongue and face, numbness in hands and heart palpitations. I mentioned it to the nurse who said oh dear and left it at that. It has been 2 weeks since my last dose and the stabbing nerve pain is back in my hands and feet.
I spoke to the GP today and asked if I could switch to high dose oral supplements, thinking that it would help, but she said to wait 3 months for my next injection. I know it’s not diet related but I was not told the reason for my deficiency. Should I wait now for 3 months and bear the nerve pain? Does it get better on its own? Thank you.
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Madirah
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Stabbing nerve pain is a symptom of neurological damage, and the NICE guidelines suggest you should then be on every other day injections until no further improvement.
6 loading doses is standard, but with neurological it needs to continue. Hardly any GP's seem to continue with it though - perhaps one extra week.
If you're still suffering, you could ask for a second bout of loading doses.
But otherwise it could be a good idea to call again or write to the practice explaining the NICE guidelines are every other day and that your symptoms need ongoing treatment to avoid any long-term damage.
Alot of people take a while to heal from b12 deficiency. Months and years. But if your symptoms are returning - and they are neurological - then you should really get continued injections. So it's worth making a request either on the phone or by letter.
ALSO - if your symptoms are not diet related, they MUST investigate the cause. Oral supplements will probably only work if it is diet related, so if you've had a standard diet including red meat then it's highly unlikely it's related to that. So that needs to be looked into further by your GP, since you have no idea of the root cause.
You mention nerve pain and numbness, both of which would usually be considered as neurological symptoms so I would expect your GP to use the second pattern for those with "neurological impairment".
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
"asked if I could switch to high dose oral supplements"
Although some people on this forum manage their B12 deficiency with high dose oral supplements, some forum members including myself report that oral treatment is ineffective. I only started to make progress when I started B12 injections.
The evidence that oral treatments are as effective as IM (intra - muscular) B12 injections is of low quality. Can provide links to articles about oral B12 treatment if you want me to.
Point 1 is about being under treated for B12 deficiency with neuro symptoms present.
Vital to get adequate treatment for B12 deficiency. Inadequate treatment increases the risk of developing permanent neurological damage including damage to spinal cord.
Some UK forum members resort to treating themselves when NHS treatment is not enough.
I feel this is a last resort but I was forced to when NHS refused to treat me.
There are threads about self injection on the forum.
If you click on "project documents" then on "consultation comments and responses" it gives a good insight into current issues around diagnosis and treatment.
Local b12 deficiency guidelines
Each CCG (Clinical Commissioning Board)/Health Board/NHS hospital trust in UK is likely to have its own local guidelines on treatment/diagnosis of B12 deficiency. Worth tracking down local guidelines for your area of UK and comparing the info in them with BNF, BSH and NICE CKS links.
Some local guidelines have been posted on forum so
1) try a search of forum posts using terms "local guidelines"
2) try an internet search using "name of CCG/Health Board B12 deficiency guidelines"
3) submit a FOI (Freedom of Information) request to CCG/Health board asking for a link to or a copy of local B12 deficiency guidelines.
It's also possible to submit a FOI request to GP surgery.
Read blog post below if you want to know why I urge UK forum members to find out what's in their local B12 deficiency guidelines
I used to put requests for referrals to specialists into a short, polite letter to GP along with evidence eg symptoms list, quotes from UK health documents that supported the request.
Referrals are expensive so if GP is reluctant to refer, you could ask them to write to a local specialist asking for advice on how to treat you. There are specialists whose knowledge of B12 deficiency is not great so be well prepared for any appointments.
If you want the best chance to heal buy your own b12 now and inject daily. In addition, supplement folate and ferritin but be mindful with both, demand three monthly blood tests to check folate and ferritin levels. Ignore b12 results as you will always be super high due to daily injections.
Check if you have PA but I would act as if you have it for now. Go organic, gluten and diary free and never take ANY injection that you don’t do yourself.
I too am a young mom of two. My struggles hit their peak right after the birth of my second. I combed through Sleepybunny’s suggestions and got weekly injections (which I’m still on).
I did weekly cause it’s what my doctor offered in the beginning and more frequently was making me miserable (I’m aware that daily/every other day is recommended for nerve damage). I definitely got worse before I got better with injections, almost to the point where I considered stopping them completely. The nerve damage worries kept me going. It took about 8 months before I was back to a manageable baseline.
I’m doing much better 3 years in to injections. Currently struggling with nerve pain again, but I’ve had a busy summer; I’m experimenting to see if I can up the amount of things I can do a day (like you do with exercise). Still nowhere near where I was 3 years prior.
All of this to say I hope you can push through. I know it feels like it’ll never end and nerve pain is a devil. Keeping a journal of my symptoms really helped during my healing period where it was worse injecting.
You’ve received lots of good information above. I have anecdotal info and I’m not a doctor but I hope it provides you comfort/hope on your PA or B12 deficiency journey.
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