Hi all, I posted 2 years ago re my own horrific journey getting treatment, long story I am a nurse and had a low nonal B12 with horrid neuro symptoms and knew I had B12d but GP was not having it. Anyway got treated in the end...
However, a few months ago my partner started having the same symptoms but the usual crap GP "not convinced" as no changes to his blood count etc...anyway, got some loading doses but tailed off and he has been self treating. He now says "I'm done with B12 injections" as he is getting SOB, itching and palpitations - I am concerned, these are listed as potential (but rare) side effects with high doses - I never got these and I am still on high doses. I have never heard of this and I have personally treated many patients with B12d. I am concerned because these can actually be symptoms of uncontrolled B12d and that he is just not getting it and giving up, facing a life of disability or worse.
Can anyone help? Thanks
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Babygodmother
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itching - particularly if its associated with acne - is probably a response of microbes on the skin to the B12 - they produce chemicals that some people react to - could be relieved by an acne treatment. It could also just be the immune system picking up again and over-reacting - which it can do for a while during loading doses and just after - ie it calms down for some people but for others it becomes a regular thing every time they have an injection.
May be giving him a book explaining how serious B12 deficiency is might help - eg one of Martyn Hoopers book.
I presume that you really have ruled out all the other possibilities.
Unfortunately, if he doesn't want to treat then there is nothing you could do about it. I know it is difficult (have similar concerns about my partner) but at the end of the day it really is his decision.
Maybe the first video on this link will change his mind and a reminder that it's not just devastating for the patient to watch the slow decline to disability and dementia but also for the whole family.......
Hi Babygodmother. Just a couple of things spring to mind:
About potential side effects of injections - yes, there can be some and as you recognise, these can be quite rare (possibly with the exception of the skin itching/rash - as per gambits explanation). If these are side effects, they could be expected to occur soon after the injection...and would wear off quite quickly (perhaps,with the exception of the rash). So...might be worth thinking about the timing of the injections and the arrival of SOB, palpitations and itching. (It's very unlikely to be a reaction to the injections if the symptoms didn't start within 24hours of his last jab).
I note that you say he has been self-treating...which does raise the question...has he got B12 deficency (the symptoms of B12 defiency are also the symtpoms of many other things). So...did he ever have a low or proven B12 deficiency (any idea what his serum B12 levels were (not always a reliable indicator of deficiency but a good place to start). And are you able to identify any of the potential causative factors (medications that impede absorption of B12, GI issues or GI surgery - in particular, bowel resection, - IBS, Crohn's disease, coeliac disease, Heliobactor pylori infection, nitrous oxide - dental or so called recreational, autoimmune conditions or PA in the family? Tested for pernicious anaemia (which can be present without having 'abnormalities' in the FBC).
I ask this because if you can demonstrate a causative factor for a potential deficiency, he may be more able to 'believe' that B12 deficency is the cause of his health problems...and do try to get him to watch the video posted by Polaris ...and perhaps buy Martyn Hooper's book and leave it lying around for him to read.
Another thought - B12 defiency is most often caused by some sort of absorption problem...and those with absorption problems often suffer from other deficiencies too, for instance (and these are just the main 'culprits')...
Folate: B12 and folate work together so if folate is low or deficient, the body cannot utilise B12 properly. Low or deficient folate can also cause (amongst other things) SOB, palpitations, irritability.
Ferritin: low or deficiency ferritin levels indicative of iron deficiency anaemia - can cause SOB and itchy skin (and, of course, other symptoms too).
Vitamin D is also often low in those with B12 deficiency and many here often say that they have problems with potassium too (low potassium can cause acne and palpitations) many here eat a potassium rich diet and say it helps (don't supplement with potassium unless under direct medical supervision). (Note: major problems with potassium usually only occur when macrocytosis is present and injections first commence - but you say macrocytosis was not present - if in doubt, get your GP to check potassium levels urgently - especially if palpitations get worse).
Low B6 can also be a potential problem - but too much B6 can cause neuro toxicity...so best not to supplement with this unless it's known that levels are very low or deficient (even the RDA can cause problems for some people, if B6 is not needed).
So...might be worth thinking about getting folate, ferritin, vitamin D, and potassium, and B6 tested...some of his current symptoms may be caused by other vitamin/mineral deficiencies (this is perhaps a more likely explanation than reaction to the B12 injections - apart from the rash - which is more common and, for many, tends to settle down after a while).
Unfortunately, if he does have B12 deficency and refuses injections, then (as you know) his health will decline...but perhaps if he becomes more unwell, he'll be more inclined to return to treatment.
And, of course, if he does get worse - or no better - he really should see his GP to rule out any other potential underlying causes (and those with B12 problems often suffer from thyroid problems, diabetes, or other autoimmune conditions too - so worth checking out - certainly if his health does not improve).
Sorry that there aren't any easy answers on this one...just some things to think about.
Best of luck to you both...let us know how it goes, and post again if you need any further advice or information.
👍
P.s. Can post links to information if you need 'evidence' to help with GP...just let me know.
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