Hi everyone,
I was looking to reach out to any Indians using the forum seeing as our healthcare system Is unique in certain ways vis-a-vis procurement of b12 injections etc.
I’ve been suffering symptoms of B12 deficient for the past couple of months and I would live your help on how y’all managed to cope. What tests y’all did etc.
Thank you so much,
Prateek
I'm not in India but a couple of thoughts
a) if symptoms came on suddenly it could be folate deficiency rather than B12 deficiency
b) the main thing that distinguishes India from UK, US etc is the much higher level of veganism, which causes a dietary B12 deficiency. However, as in a) this tends to come on very slowly - years or even decades as the body runs down stores of B12 and the amount of B12 used is actually very small.
c) the tests available aren't going to change - the only variable from country to country tends to be whether the main test is serum B12 or active B12/holo-T
Tests to go for would be - full blood count, vitamin panel (particularly B12 and folate), iron panel, thyroid panel, HbA1c. Clarifying tests in relation to B12 would be homocysteine and MMA (needs to be done with a kidney panel)
Not all these tests relate to B12 but they cover a large number of conditions that have overlapping symptoms eg iron deficiency, folate deficiency, thyroid problems, diabetes.
My main symptoms were weakness in one side, slight tingling and daily headaches. My functioning wasn’t affected but it robbed me of my enthusiastic personality these few months.
My b12 was 225. (232-900)
I’m supplementing with shots and tablets.
Doc says sometimes if you’re deficient it affects your ability to absorb b12. So once you get your b12 up the absorption might improve.
if you have had B12 shots then further testing of serum B12 is not going to be helpful.
B12 usually affects you in a symmetrical way (because its affecting processes at the cell level) so if your problems are focused on one side that suggests that there may be something else going on.
High serum B12 won't affect B12 absorption (from food to blood). However, it can affect transfer of B12 from blood to cell meaning that some patients need much higher levels of B12.
If you are being treated with methyl B12 you could discuss changing to another form (cyano or hydroxo) with your doctor as some people do find that methyl makes them anxious. Some people also find that cyano/hydroxo suits them better but this seems to be rarer in respect of anxiety. I personally find that methyl does nothing for my mood but cyano and hydroxo both work quite well in that respect.
It may also be the case that you don't manage to absorb even high dose B12 - not everyone benefits, meaning that you might need more frequent injections.
The thing is I’ve checked for most things including MS, ALS etc.
All blood tests. An MRI.
Thyroid.
The only standout was B12. And the one sided weakness was at the onset of the diagnosis. Now it seems to have largely died. I’m left with the headaches and the weakness in legs.
There’s a slight soreness in left leg as well. My doc says this is one of the manifestations of b12 and has given me hydroxy shots.
if you have recently started treatment then you need to be aware that it can take a while to feel better and it isn't uncommon to feel worse before you really start to notice the positive - in particular you can start to feel more and worse aches and pains.
Suggest that you keep a diary of symptoms and monitor them in relation to injections etc.
If you had anaemia this can take a month or so to clear.
I’ve started supplementation a week back. Had 5 shots. Started oral supplements 3-4 days ago. Doc says do this with a good diet and supplements and evaluate in 3 months. So I’m hopeful that it’s just a dietary deficiency.
suggest you keep a diary of symptoms anyway. Unfortunately having shots can mean that you need to keep serum B12 levels much higher than you did previously and that may mean that you need injections in future even if the original problem was dietary. Not always the case and if you are severely B12 deficient and starting to get neurological symptoms injections are definitely the way to go as raising serum B12 levels using oral supplements even if you don't have a B12 absorption problem would take too long.
Hope that the next few months goes well.
Thank you. It’s possible to lead a normal lifestyle after this right? I’m only 24. I hope I can recover fully and live a normal life. That’s my worry
yes, perfectly possible to lead a normal life.
I was diagnosed with having a B12 absorption problem in my 50s after years of depression and problems building up over decades. Managing to get my B12 levels to where I needed them was like getting a life after decades of just existing.
Omg that’s a relief. So now you’re fine ? Like as fine as any other person you’re age within reason?
Thank you for all your help. Your advice and this forum will hopefully save me.
I'm now battling with thyroid problems but I certainly manage to keep active, have a good job, and I'm involved in various activities in the community where I live.
I am Indian living in Germany from last 3.5 years. Diagnosed PA 5 months back when symptoms started 10 months back. Into injections every other day with methylcobalamin 500 mcg for 3 months and some symptoms gone and hopefully improving with others. I found out that methylcobalamin works well for me compared to the other forms and I am not sure though why that is. In India getting any forms of b12 is very easy and cheap compared to other parts of the world. Only thing is most of the doctors don’t have any clue how b12 affects the body and the right dose to be given for a patient with PA. They have a blue print and prescribe to follow monthly injections which might not help everyone.
I'm an Indian too, tested for celiac, thyroid only thing out of place was b12 and Vitamin D. Having daily b12 shots for the last month but it's not getting any better at least as of now. My main symptoms are Severe brain fog (worst of it), numbness and Tingling, vision problems, gait and speech problems and Depression. Iv checked for many things but can't pin point the cause but im currently treating for the b12 and see how it goes. I'm going to a neurologist in a couple of days to investigate further and my levels were 187 pg/ml. I also have vitiligo. Im 21 but I feel like 100 years old
I’m so sorry to hear you’re suffering. My main symptoms are headaches daily, weakness in legs and a little unsteady gait, I can walk and All fine. But I sometimes feel like I’m favouring one leg. Did you get an MRI Done?
I got one done and it was clean.
I'm getting one in a couple of days. I also experience weak legs and unsteady gait.
Okay. I’ve just started experiencing these a couple of months ago. So I’m trying to treat it early. Even my thyroid and all was normal.
Also can you describe your vision problems?
For me vision problems are like reading a world like a bat as hat and such. I also skip words while reading or get them in wrong order. Iv had these symptoms for 2 years and I regret taking no action until it got to the point where I could no longer function. Good thing you caught it early, get your levels up with regular shots and take care of yourself cause this can make you miserable.
I am from India and suffered B12D last year. Had burning and tingling in fingers of both hands. Burning spread to shoulder blades and arms that when I visited our family physician. He asked me to get tested for serum B12 which came back as 206 (250-1100). Another issue was weakness, dry mouth and breathlessness at times.
I was put on 10 injections course over 1.5 months. Burning sensation and tingling disappeared after 2 weeks into the jabs but then I started having chest pains. I had lifted heavy objects a week back and Dr said its coz of Costochronditis after getting my ECGs done. The chest pain went away after 4 months but made me extremely anxious for these 4-5 months. After the course my serum B12 shot up to 1830 and then when after 10 months it came down to 788 with Homocystein at 16.
I might get it rechecked after 2-3 months to see if it again comes back to 200 levels. I am vegeterian and eat 1-2 eggs once in 3-4 months. Diet might be the issue why I am deficient. I was on Methylcobalamin shots and then Dr put me on tabs for another 1 month.
Wish you all the very best and a speedy recovery.
Did you have any headaches? I’ve been having headaches everyday and weak legs. My serum was 225 before shots
NO headaches but I had kind of jelly legs.. Everybody has wide range of symptoms but most B12 symptoms are common for B12D patients. People also have dizziness and lightheartedness with balance problems.
Hi Prateek
I'm not Indian but I was living in Chennai for 4 years when I was diagnosed with B12 deficiency at a level of 129.
My doctor at the time worked with me to get the right treatment regime which for me was bi weekly injections after the
initial loading doses.
I was seen by Dr Jayshree Soundararajan in Apollo hospital in Chennai. She was very knowledgeable about B12 deficiency and worked with me until I felt well again.
I'm now back in the UK and self inject and run 6km every day.
I'm grateful that my illness was picked up in India since the Doctors there generally seem to have a much better understanding of it and how dibilitating it can be.
Good luck.
Hi Karen,
What were you symptoms? Could you help me out with how you got diagnosed for the same?
Hi Prateek
My main symptom was severe fatigue and brain fog. I remember asking the doctor if it was normal to feel so tired all the time that I just wanted to lie down and die. She then tested me for B12, vit D, folate etc. were all low too.
I used to go to the emergency room in the hospital every other week and pay RS150 to have the injection administered.
Can you find a good all round Doctor at an Apollo hospital and ask for a comprehensive blood test including B12? I think they do something called a health MOT test which checks everything for around 800 rupees?
Hey so I’ve gotten b12 tested And my b12 was 225. My doctor has suggested the usual 10 shots and then diet and supplements.
My symptoms are largely headaches daily and weakness in legs. So do you now have any symptoms left and how long did it take to feel better?
Ah good, i felt better initially after the first couple of months but when the doctor then put me on monthly injections I started to feel worse again. We worked out in order for me to feel well, my levels needed to be over 1,000, so switched to bi weekly injections indefinitely.
I hope the treatment works quickly for you and you start feeling much better soon.
Hi Karen,
Thanks so much. I hope I feel better as well, I was perfectly normal before all of this.
After your biweekly shots now do you have a normal sort of lifestyle? Like can you do everything peacefully like other people?
Hi Prateek, I hope with the support of your doctor and the right treatment, you'll feel normal again. Wish you well.
What a difference B12 and this forum makes!
New interloper from a neighbouring forum - advice please
Hi new to the forum. Strange shivering/tingling sensation.
New to this forum
New to the forum
