I have been reading through several posts regarding others b12 deficiency’s and hoping some may be able to respond to this post.
After experiencing numbness and twitching in different areas of my body (mainly legs/hand tremors) I had full bloods taken last month which showed low B12 around 135 and was told I’d need the 2 week course of 6 injections and injections every 3 months from then.
I completed the course of 6 injections a couple of weeks ago and the neurological symptoms went away almost straight away when I started the injections and during the course. I also felt a massive improvement in my general well-being, less brain fog, tiredness etc - it was great!!
Now, 2 weeks after having my last injection, the hand tremors have returned and the feeling of ‘heaviness’ in my right arm and leg. I am also feeling a lot more sluggish today than I was 2 weeks ago, which I can deal with to some extent, but the neuro problems I’m totally dreading returning on a day to day basis.
Has anybody had symptoms return so soon after the initial course of injections? Is this normal and will I feel worse before I feel better?
I plan to call my doctor tomorrow to discuss, but from the appointments I’ve had previously - I don’t feel they have a huge understanding of B12 or the neuro symptoms that can go alongside it. I’m wondering if it’s more benneficial to get a referral to a specialist (I’m UK based).
Any advice will be greatly appreciated.
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Nelson_s
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yes, I definitely had this experience although for me at the beginning it took ages for my symptoms to improve at all.
I gradually improved a bit but then the symptoms would return about 2 weeks after the injections and at that point I was only getting them once every 3 months. Luckily one of the GPs and the nurse are understanding and I now get monthly injections and can even request sooner if I need to. The first GP I saw had very little understanding.
With monthly injections I am now usually symptom free but I have found that some things can still cause a regression, e.g. high stress levels, Covid, doing too much exercise. It can be a bit of a balancing act.
There are simply no specialists for B12 deficiency/ P.A. The medical profession is very ignorant on the subject . I need weekly injections , so have to self-inject .If you find it impossible to get regular enough injections from your GP , you can get information here on how to obtain all you need for self-injecting . It is easy and cheap l
Yes and fortunately I was sent to see a Psychiatrist and he was the one that carried out a B12 Blood Test because he had never know a person Knowing that they were going through Morbid Depression and found it interesting. The usual panic followed: three a week injections, one booster every 8 weeks about 6 months as an Out Patient at my Local Mental Hospital for therapy. It is an odd thing B12 Deficiency, it affects different people differently. With me it was Morbid Depression but I knew I was having morbid thoughts and wanted a perfect way to end it all but found it interesting to know why because I had money in the Bank. House Paid for. two new cars. Very successful Children and a great marriage .... no reason at all for ending it all and it would have been devastating for my family ... and all because of the body not being able to absorb B12 vitamins from food. This sort of knowledge need spreading around.
I was a suicidal young teen, no real reason either. I had a very bad case of flu and developed severe depression afterwards. I didn’t want to eat or move or take part in any life whatsoever. My younger brothers stayed off school to try to make me eat soup ( parents working). I was suicidal for ages. Now I look back and think perhaps it was a B12 problem. I don’t eat meat but no diagnosis except Hashimoto's. I just munch on high dose B12 tablets now. You’ve set me thinking now 😎
Worth a GP check. I tell as many people that want to listen. I live by the maxim: It is better to have information and not need it than to need information and not have it. B12 Deficiency is heredity, when I told my younger sister what I experienced she went to the GP, they confirmed she had Pernicious Anaemia and the sister now has 12 weekly injections. An odd thing lack of B12.
Hello Marymary7 it does affect people so differently. Some people just get tired but it seems that you and I have that small area of the brain that controls rational thought regarding depression. IF you have pernicious anaemia (B12 deficiency) then the stomach cannot absorb the B12 vitamin from eaten food or tablets. The B12 has to be injected into a muscle. To increase my understanding I purchased a book: Pernicious Anaemia: The Forgotten Disease by Mary Hooper. Amazon sell it and they even sell second hand copies. You may find comfort from the book and quote particular paragraphs to your GP. Remember though my B12 treatment came from the Hospital Psychologist so no GP will ignore their advice. Good luck with your quest Marymary7. Reading some of these posts some people do self inject and the 'nice' thing is: If the body has too much Vitamin B12, it leaves the body when you have a wee ....
Thanks. Those suicidal thoughts may well of been puberty hormones along with the terrible Influenza I suffered, I was only11 or 12 yrs I’m guessing, I’m 68 now. My absorption problem could be tied in with the Thyroid problem they do say.
Very interesting. I think it can also depend on the source of the B12 Deficiency too.
For example, PA is rooted in a stomach absorption problem which can certainly be inherited. But B12D can also stem from the intestines/gut with bacterial overload taking up all the B12.
In my fathers lineage there is an inherited bowel sensitivity that led him to colon cancer and evidence of schizophrenia. Not explicitly B12 deficiency, but perhaps it just wan't looked at in those days (1980's/1990's).
I have since developed a bowel related B12 deficiency and experienced mental instability, along with polyps found at age 40. There were certainly some lifestyle factors but essentially there is a bowel sensitivity that may not tolerate too much imbalance.
I am glad that you recognised the deficiency was at play and that the thoughts you had were not 'real'. In essence, it reveals a profound truth that we all need a healthy balance of the earth's molecules in our systems to live out our true lives. So I do hope medical science can start waking up to the need for trials on the gut/brain axis and the power of a balanced gut microbiome. If it is, indeed, a problem in the gut and not a lack of absorption in the stomach like PA (Which may have a very different hereditary root to the bowels but still result in B12 absorption problems).
It's great that you had the loading doses. It can take a long time to heal and your body goes through alot in the healing process.
I'm afraid Doctors are unlikely to help you passed the initial loading doses. You may get them to agree to a 2 monthly jab instead of 3, but they generally will resist giving you more.
You can 'ham it up' with a sob story about not being able to work, see your family, do whatever you need to do because you're still terribly unwell.
You can also show them the BNF Nice guidelines which state that neuro symptoms need every other day injections. cks.nice.org.uk/topics/anae...
You may get a push back that 'we only do that in hospitals when people can't walk' or something to that tune. But it's worth showing them the treatment protocol and that you are terribly unwell and need more B12.
Otherwise, like most people, self-treatment becomes the most reliable way to get better.
CAN BE hereditary Contralto, not IS Hereditary. Untreated it can lead to heart muscle degeneration and my father died before he was 68 ... with heart failure makes you wonder? As I am frequently told: No two people are the same. Good luck to us all.
B12 deficiency with neurological symptoms needs a different frequency in order for nerves to mend.
The purpose of a loading dose is normally to boost up your low B12 - and then maintain those improvements, but you firstly need to be at a level of health that is worth maintaining !
The medical guidance regarding treatment for those presenting with neurological problems is every other day (EOD) injections until no more improvement can be gained by continuing. Then after that, a maintenance frequency of an injection every 2 months would start to make more sense.
Of course, a GP is entitled to alter this recommended frequency to aid a patient's efforts to regain as symptom-free a life as is possible - but obviously would not be entitled to reduce a recommended frequency if the risk might be permanent nerve damage.
I had B12 deficiency, did not respond to the usual treatment regime and was found to still have a raised MMA level. This was confirmed by the testing lab as functional B12 deficiency, just as my doctor had suspected.
Meaning that my injected B12 was not getting to my cell/tissue level, not in the amount required.
My treatment regime was then increased to two injections a week (EOD not being viable and the requested three a week never materialised) . This frequency continued because it was evident to all (nurses, GP, friends, family, employers and work colleagues) that it was working. It took three months at this frequency before I was even able to distinguish when I was being injected - previously, I always had to ask if the nurse had done it yet !
I still cannot manage well, unless I continue to have injections at this frequency - but these days I do it myself.
The promising thing is that you had an early positive response to treatment. You just need to find a treatment frequency that will help you keep it ... but only after you have satisfied yourself that no more can be achieved by EOD injections.
A good GP would be looking for exactly the same thing on your behalf - even if they had to read the current medical guidance first. No harm in not knowing - as long as you know you don't know !
After a visit back to see my doctor he is now sending me for an MRI on the brain to rule out any problems going on here. Dismissed that the symptoms could be down to b12 and when I asked what would be be the next steps if MRI results are clear (which I am very much hoping they are going to be!!!!), I’ll be referred to a neurologist in this case.
Has anyone else’s doctor sent them for an MRI due to symptoms? I understand needing to be on the safe side but it’s really hard not to worry about this and it’s got me questioning if I have something more sinister going on.
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