Early January i went to see a few GP's as i was feeling very off balance. They thought it could be an inner ear infection. However 1 of the GP's arranged for me to have a blood test which showed my B12 was low so another blood test was arranged which again showed it was low (intrinsic factor came back negative). 6 loading doses were arranged & i was advised to take a supplement, improve my diet & go back for a blood test in 6 months. Whilst having the loading doses i seemed to feel worse with the off balance/dizzy feeling & i noticed a 'noise in my head' which could get quite loud (a sort of humming/buzzing sound). About a week after the 6th loading dose the off balance feeling just about disappeared but then started to return & i think is probably worse than ever.
Any advise would be much appreciated.
Thank you
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Cheetahsrmyfave
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It is not uncommon for some symptoms to appear to get worse before they get better as the B12 you are having starts repairing the damage done to your nervous system and your brain starts getting multiple messages from part of the body it had "forgotten about" or lost contact with. I sometimes liken it to a badly tuned radio on which you have turned the volume up high trying to catch the programme you want when all of a sudden the signal comes in loud and clear and the blast nearly deafens you.
A lot will depend on the severity and longevity of your B12 deficiency as to how long before there is no further improvement or recovery. Some symptoms will "disappear" quite quickly whereas others may take months or even years. There is no set timescale as we are all different.
If you can get to see a doctor please also ask him/her to check your Folate level as this and B12 help your iron to make red blood cells and to function properly.
I am not a medically trained person but I've had Pernicious Anaemia (one of many causes of B12 deficiency) for more than 50 years and I'm still "clivealive" coming up to 82 years of age.
I'd had various b12 deficiency symptoms for 2 years. In Hindsight. Less dramatic and Gp thought stress and the menopause.
I knew something more.
Loading doses made me much worse.
I had epley manoeuvre s.
A brain CT
Before b12 tested!!
Tinnitus also .
I've still got a vestibular disturbance.
As seen 3 neurologists now.
I originally thought an infectiin or iron anaemia.
You need more injections.
Every other day until no more improvements.
It's In the doctors guidelines.
I had to point this out after finding this forum.
I lasted 5 weeks after loading doses as was supposed to wait 3 months.
In Hindsight shouldn't have happened
I also had 2 brain scans a year apart.
To date nothing else has been found .
I was well and on no medications before this
Cawthorne pysio exercises helped me. intially in bed!!
It will improve.
Folate vit D iron shoukd be checked too.
I've been for many eye tests
Hearing ear pressure test.
All 'normal'
B12 deficiency affected my brain and messaging .
Hope you get thd treatment you need
Did you get your iron/ferritin done. Ferritin are your stores of iron so if hey are low you are iron deficient. Doctors don't bother with it unless your iron is low then you are classed as iron deficient anaemia. When you get B12 shots your ferritin drops so maybe get that tested and iron and supplement. I have to have both b12 and iron or I'm very off balance too
Thank you for your responses. I believe my folic acid was low in the initial blood test but not sure what it was in the second blood test i had done. I think i may contact my GP again. 😊
I have no medical training. From my experiences and what I have read your experiences of symptoms getting worse then getting better, then returning when injections were stopped. Was the most likely outcome.
There is the option of self injecting if you dont get the help you need from your GP. It sounds like you need more loading doses until symptoms stop improving.
Morning- I have terrible off balance feelings, dizziness and noises in my ear, also numbness and coldness in hands and feet.. I was diagnosed with B12 deficiency 2 years ago and now I self inject every other according to Nice guidelines and advice on this forum.
However although I am feeling better in some ways, my balance has not improved at all. In November I had a really bad attack of vertigo and subsequent blood test revealed thyroid deficiency. The two often go hand in hand, also linked to hug cholesterol. My advice get a blood test for thyroid. I was unaware of the link until recently
The symptom that drove me to the dr was also a horrible off balance feeling which was originally put down to vertigo but then after some blood tests it was discovered that I had low B12.
I was put on oral supplements to begin with and I just got worse and worse so I went back and was put on injections.
I felt dreadful during the loading doses and then I was on 3 monthly injections and the off balance feeling would return well before my next injection. Now I’m on monthly injections and I’m pretty much completely recovered but it has taken a long time.
If you look through the list of B12 deficiency symptoms I bet you’ll find some others you are showing. Definitely keep going with the injections and push for as many as you think you need.
My balance and coordination are terrible (I'm 6ft and everyone keeps asking if I play basketball? "with my coordination?! nope!"), and the noises in my ear/head. They are symptoms of B12 deficiency...once the doc has eliminated the usual suspects for these symptoms, they tend to ignore the possibility of B12 deficiency
I usually urge UK forum members to find out what's in the local B12 deficiency guidelines for their ICB (Integrated Care Board) or Health Board. If you can't find them online or by searching forum posts then best bet is to submit a FOI (Freedom of Information) request to ICB or Health Board asking which B12 deficiency guidelines are used locally and for a link to or copy of them.
See blog post below if you want to know why I suggest this.
Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, more UK B12 documents, B12 books, B12 films, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.
My balance is not good & I've started with double vision. I stopped my B12 spray yesterday as my bloods showed B12 at 2000.. far too high... I don't know what to do as I have brain fog too. MRI brain scan showed a 'messy area at front left but neurologist said he wasn't worried about it as it was probably damage from years ago(!!).
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