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Was improving but feel really rough again, is this really B12 deficiency

Julie07
Julie07

Hi, I completed the 6 loading doses, finishing a week ago. My levels were 356, folate 5, but due gastric issues over a number of years and long term use of Omeprozole (9 Years) we think I may not be absorbing the Natural B12 from my diet, which is on the whole healthy and balanced.

From the day before my last injection I have felt much better, fog lifted, tinnitus quieter and no vertigo attacks. I still have numb/tingling hands and feet but just to loose the brain fog is amazing.

Yesterday I did not feel as good and today the fog is back. I am waiting for my MMA and IF test results which hopefully will be in next week, we will then know if this is in fact a B12 issue or something else.

I got quite excited when I started to feel better last week but now I am thinking this is not a B12 issue as surley there is a lot of B12 in my system now after the loading injections. So sorry but this is new to me and I am desperate to feel better. You all have so much knowledge and I thank you for all the help you give to everyone going through this battle. Regards. Julie

9 Replies
oldestnewest

Hi

Just to say that your response to the jabs is quite normal - it takes a while before things start to get back on an even keel. Sounds like you do need more B12 in your system, though!

Don't forget the IFA test is notoriously unreliable. If it's positive, you definitely have PA, but if it's negative, you could well still have PA! Treatment for PA and B12 def is still the same.

Good luck!

Julie07
Julie07 in reply to spacey1

Thanks Spacey1, it’s all very confusing re testing. Will the MMA prove PA?

spacey1
spacey1 in reply to Julie07

Sadly I'm not that knowledgable! But someone will tell you!

Julie07
Julie07 in reply to spacey1

Thank you ..

clivealive
clivealiveForum Support in reply to Julie07

No Julie07 the MMA test will indicate whether you are B12 deficient.

Methylmalonic acid is a chemical used up in one of the cellular reactions mediated by B12. If there's not enough B12 in the cell then MMA levels will rise. If they're not high then it means your cellular levels of B12 are OK. High levels of plasma MMA (>0.75umol/L0 almost invariably indicate cobamalin deficiency.

It is not uncommon for some symptoms to appear to get worse before they get better as the B12 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 you are having injected help your iron to make red blood cells and to function properly.

I am not a medically trained person but I've had P.A. (a form of B12 deficiency) for more than 45 years.

I wish you well.

Julie07
Julie07 in reply to clivealive

Thank you Clivealive, my folate was 5, I have started taking folate acid with vit D to boost , in order to help the B12, although I had had 3 injections before I read it was useful to have your folate in the upper range during the early stages. This site has so many knowledgeable kind people, it’s great to ask questions in order to understand about the condition. Regards J

clivealive
clivealiveForum Support in reply to Julie07

Well done.

I got 10 loading doses in Jan-Feb this year to treat B12 deficiency (It was 206 in my case), but trust me, the actual improvement started post 2.5 months. I used to feel tired even without doing a whole lot of things in the day. I had tingling in my fingers and pins and needles in whole body.

The tingling is 95% gone now while I still get pins and needles but only in upper back now. I had burning sensation in arms, legs, feet and back of neck which went away in first 2 weeks of starting the jabs.

B12 treatment tests your patience like anything. I started having burning and pins in my chest (Only a small area which I could pin-point) only after starting jabs which I relate to healing of the nerves in chest since I never had this feeling in my entire life. My blood reports on heart related indicators are normal. ECGs came back normal too and the cardiologist feels I dont have any heart ailment.

So you may start noticing new symptoms post jabs as the B12 in your blood starts repair process. I have learnt it the hard way but on positive side, a lot of my symptoms are healed in 3 months now. I dont feel tired anymore and usually spend the whole day quite happily. I also had raised anxiety coz of this B12 deficiency and chest pain. RCBs sually are made every 90 days and that could be the reason it took so long for me to feel alive again.

Be patient and keep consuming B12 in sublingual form if jabs are not prescribed post loading doses.

Thank you Linkerror, I had not thought of taking B12 in sublingual form, is there a make/ brand you would recommend. How much should I take per day please?

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