First of all, thank you so much for all your wisdom and advice - I honestly think I would’ve lost my mind without your input.
I looking for some guidance/thoughts about my 17 year old daughter.
After a blood test in August, her B12 level came back at 95. She had some weird symptoms- mainly difficulty eating/ weird sensation in throat...not tired particularly, but some breathlessness and quite pale. Up until that point she was healthy and robust. She hit her head on a window rather hard on holiday, and that ‘seems’ to have been a trigger, might be coincidental. She wasn’t concussed. She is seeing a cranial osteopath who says she sustained a severe whiplash injury, and this is being worked on. GP wasn’t alarmed as she wasn’t knocked out.
After some to-ing and fro-ing she had a loading dose and then monthly injections but still had neuro symptoms- facial numbness, tinnitus and mild dizziness. GP agreed to follow guidelines and she had every other day injections for a couple of weeks - I felt I had my daughter back. GP suggested spacing injections to see if she could go longer without - after about 5/6 days neuro symptoms started to creep back - her mood has also plummeted and she has no motivation to continue her A levels. She has just returned from GP, he gave her an injection and she is returning on Monday. She said he was checking reflexes and balance etc and thinks because she has got worse, it’s not because of b12 deficiency. He thinks it’s a migraine related condition and wants to pursue that avenue. Apparently he said she wouldn’t be getting symptoms back so quickly as she’s just been flooded with b12. He also prescribed omeprazole as thought it was reflux - as symptoms returned after stopping b12 I guess not?
My feeling is she was so much better on every other day jabs that it must be b12 related. Am I going mad? I’m feeling yet another battle coming on and my daughter thinks I’m making a fuss and need to trust the GP expertise..it’s causing friction (hence her serum gp alone). I don’t want to alarm her too much, but she doesn’t realise GPs don’t seem to know much about this- I wanted some advice/thoughts. Should I push to go back to alternate day injections until absolutely no more improvement is n m made (however long it takes) or am I barking up the wrong tree? Could it be something else?
Should also mention ferritin just within range (only just) so supplementing with spa tone. GP said no need to supplement as in range. He is doing another blood test on Monday - not sure why, but I will go with her on Monday.
If you’ve got to the end of this - you deserve a medal! I feel so lost and frustrated. Are there any experts/good experiences in Somerset/Bristol/Bath that you’ve dealt with?
Thank you x
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Felt better with it raised. I said to the Go I wanted it back to where it was before starting injections. Its 39 at present taking iron! Was 61. When it was 29 I felt shaky and breathless.
I also had a nasty fall before then getting virtigo then a diagnosis of b12 deficiency.
How often is yue daughter havi g b12 injections at present?
I'm still on 2 weekly 16m in.
Two neurologists dudnt agree. I e thought variant migrain from fall. Other thought all down ti b12 def.
I dont think we will ever know. I have been left with a vestibular disturbance.
The only thing that has helped me to date is b12 injections
Tried amitriptyline to help headaches. Didnt get on with it at a very low dose. Been offered so many drugs it's quite alarming.
If you think your daughter was better on every other day injections she was.
I got mine back fir a period. Then went weekly when 2 weekly.
Thank you so much - it’s so hard to watch her decline. Luckily she had an injection today and has another booked for Monday- just feels like it could be whipped away at any moment as GP doesn’t think that’s the problem - even though she improved hugely after 2/3 weeks of every other day. Said she would decline so quickly after a week of not having an injection if it were down to b12 deficiency alone 😡 don’t know what to think!
I am going to ask for neurologist referral I think. Thank you so much for sharing your difficult experience- so sorry that this horrible condition is so challenging x
I'm so very sorry you & your daughter are going through this.
You're right, doctors don't know everything, especially around B12!
I have small fibre neuropathy from it now which has damaged the nerves in my feet.
My nurse said I should of been having every other day injections until symptoms eased then maintenance injections.
I was refused so have been self injecting every other day for almost 15 months now.
My painful feet are getting much better, though the tingling remains.
I have tried to spread my injections out, but the first thing I noticed was my mood, motivation & energy levels plummeted. Now my partner knows if I forget due to my mood & tells me to go stick a needle in my leg!
Everyone is different but your daughter does sound like she needs every other day for now.
Someone with more experience than me will offer better advice. I'm not medically trained, it's just my experience.
I still get fatigued when I over do the things I used to take for granted, but am learning to try to pace myself as I'm stubborn & refuse to give in, so that's when I have to keep having a word with myself!
Please let your daughter know that not all doctors are experts, they're only human & can & do make mistakes.
If you don't get anywhere, I would join the PAS (Pernicious Anemia Society) who will advise better.
I was given omeprazole and colofac for my bloating and my I think its called acid reflux ( i kept bringing up acidic contents of my stomach when I bent over) they definitely seemed to have helped but I cant stop them though. If I do I feel wretched. I would say if its migraine related interesting fact, my daughter was 6 when she had migraines blinding headaches, couldn't bear the light , projectile vomiting. I was told by the dr she was too young to have migraines. Dentist noticed she had a over bite and had her fitted with these things they call ice cubes in her mouth , the migraines stopped , told a grown up friend about it, she had her over bite fixed her migraines stopped and she had suffered since we were kids. I do hope you get to the bottom of what is wrong with your daughter its a tough time for them now with A levels pending ( my daughter is the same age) Please tell your daughter I suffered with mouth ulcers and was always exhausted pins and needles and feeling odd for over 20 years before they tested my b12 it was 98 and since having the injections my life has improved immeasurably, not perfect but a lot better. The drs cant know it all .
Ferritin just within range.... did your daughter also have folate tested ? Vitamin D ?
Alongside B12 deficiency, these are also often low or low-range, or can be.
It takes a while sometimes to get these stable again.
My serum folate fluctuated between 5.5 ug/L to over 20 (range: 4.6 -18,7 ug/L) after 3 months' treatment then back down: 12, then 9..... so now take daily multivitamin and mineral supplement, watch my diet carefully to ensure each day I have plenty of leafy greens, broccoli etc. and GP checks my level yearly : it remains high now.
Daily multivitamin and mineral was not sufficient to keep my serum ferritin higher in range: this also fluctuated and dropped to mid-30s (range: 13-150 ug/L) within a few months after additional treatment. GP thinks it needs to be above 60 ug/L to get rid of symptoms, Oral Medicine consultant wanted it to be about 80 ug/L because of my sore splitting mouth (angular cheilitis), although try as I might I could not get it above 60-ish. He accepted this as my natural limit.
I got a Dexascan automatically because I'd broken a bone in my shoulder and probably my age (now in my 60s)- and was found to have osteoporosis of the spine -so Vitamin D supplied by prescription. I am having another scan in April to see if improvement has continued from last year's results, but all looking hopeful now.
I now seem to have these under control and after a couple of years of injecting every other day, am now finally experimenting with an injection about every third day. My GP knows that I self inject and now never tests my B12 level as she knows it will be very high now.
I still have not got rid of all my symptoms, but am very much better than I was. Just like Ritchie1268 - I am aware that symptoms can come creeping back if I overdo it. If I don't notice, my partner will !
I first went to the GP at the start of 2015. B12 deficiency found to be the problem in early 2016. I have seen a lot of consultants, even had my DNA looked at but still have no answers.
Your daughter banging her head has obviously made this process difficult for her and her GP - could it be that dizziness was the cause of her head injury (possibly chicken-and-egg dilemma) ? Omeprazole/ Lansoprazole can affect B12 replacement (University of Maryland medical centre: Drugs that Deplete Vitamin B12 (cobalamin) ). If GP is trialling B12 injections and effects, he might want to delay this (?)
You are not going mad. You are concerned about your daughter's very low B12 levels.
I think, like most of us, knowledge helps a lot, especially since you are likely to meet GPs and consultants who are not that familiar with B12 deficiency, or how devastating it's effect on your daughter's everyday life - and of course your own. It can be a struggle.
So learning about it helps. Useful information in Pinned Posts (right-hand column at top of page here). Help and advice available both from this forum and from Pernicious Anaemia Society if you want to join it and/or attend a local PAS meeting if there is one in your area. There have been two mother-and-daughter pairs at my local meetings, with the daughters being of a similar age to your own.
The other thing: get your daughter to keep a record of symptoms: list symptoms and dates- record when symptoms occur, how severe they are, when injections given. Effect of injections on symptoms may be clearly seen on chart, and span of effectiveness. It may be a while before a pattern emerges, or all symptoms are recognised as such, but still worth doing. Some symptoms are not obvious until by their absence after regular injections begin. For a real list of symptoms, you will need to look at PAS website or try B12 deficiency: Treatment Protocol or University Health News. You both might be surprised.
I was clueless until I read Martyn Hooper's book - the chapter about his own life was so similar to mine that I cried from a mixture of recognition and relief.
I do understand your feelings about her GP, but I now personally would not waste time looking for a GP with a sound understanding of B12 deficiency, since I don't believe it is covered much at all in their training.
The important issues are whether your daughter trusts this GP and whether the GP cares enough to listen and learn with her. What makes her better/worse/less worse ? Any visible symptoms that he can use as markers ? There are benefits to keeping to one GP and building up a clearer picture of what works. Let's hope for this for starters.
Thank you so much for taking the time to reply so fully. Yes her folate was tested and was 10.3, ferritin was 14. They didn’t test for Vit D, but I can request this when she has blood test tomorrow. So ferritin definitely on the low side, but gp adamant doesn’t need supplementing.
We have joined PAS and I will get the Martin Hooper book to educate myself better!
I’m still confused about omeprazole- gp said it won’t affect her b12 as she is having injections- so hoping this is the case. I’m not liking the feeling of being on the back foot - luckily the GP does seem to be listening, but I feel we are walking a tightrope a bit and he might just withdraw the injections. Hey ho. We will keep on keeping on
There was lots of use in your reply so thank you - really do appreciate.
I know what you mean about the tightrope - but at the moment, the GP is listening and is trying to work out what is going on.
Unfortunately, it seems that GPs generally do not have any idea about B12 deficiency's ability to affect almost everything: hair, brain, teeth, gums, tongue, lips, senses, balance, nails, skin, bones, joints, blood, sleep pattern, appetite, nerves, ability to walk -to mention just a few ! Besides which, we're all different and need different frequencies of treatment to reduce whatever symptoms we have. Difficult.
I would hope that, given how low your daughter's serum B12 level was, the GP would be very reluctant to stop injections without knowing what had caused this drop.
Besides which, B12 is not harmful. But lack of B12 really can be - hence the wide range of possible symptoms.
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Treatment every other day
Gp dose every other day?
B12 injections stopped by GP.
B12 injections stopped
GP stopped B12 injections
