I wish there was a specific thread here where we could read about improvements/ changes after starting treatment.
Lab test showed my B12 was 99 pg/ml. So far I have taken 7 alternate day shots of hydroxycobalamine. I haven't observed any improvement yet. Still have unsteady gait/dizziness, tinitus, numbness in feet and lower legs, slight numbness in hands. Blurred vision.
But my appetite has gone up considerably. I wish there was a thread here where we could read about some sort of timeline of improvements/changes.
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nkindia
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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 47 years.
I have been on cyanocobamalin injections every four weeks which was the form used over 47 years ago in 1972 when I was first diagnosed with P.A..
When hydroxocobamalin was introduced in the 1980s I had an allergic reaction to it so have continued on the cyanocobamalin ever since. It is now not prescribed by the NHS in the U.K.
It is very early days in your treatment and not everyone has the same reaction to the B12 injections.
Do you know why you became B12 deficient in the first place?
Your Folate level will probably be OK being Vegan but please continue with the B12 supplements for the rest of your life and pass this on to any of your friends who are also Vegan/Vegetarian
Hydroxycobalamine is easily available and quite cheap. It's called Trineurosol HP. 5 ml vial costs Rs 54. Make sure you read the label first because there's Trineurosol H also which is different composition.
I became a strict vegan 7 years ago. Unfortunately I didn't pay attention to the warning that vegans must take daily 1000 ug supplement of B12. Generally our liver holds reserves that can last for 6 to 7 years. An year ago I started experiencing tinnitus and ED. About 6 months ago, blurred vision and slight dizziness while walking. A month ago my hands and feet started going numb. Checked serum B12, it was 99 pg/ml. Immediately started hydroxycobalamine 1ml every alternate day. Today I had my 7th shot. I will continue this for another week so total 3 weeks then I am planning to take weekly one shot for 6 weeks and finally one injection every two months life long. Anybody reading this if wants to suggest any changes to this treatment schedule, please do so, appreciate it.
So far, the unsteadyness while walking has INCREASED but tinitus seems to be a little less annoying. Numbness in feet is very slightly reduced. Appetite has increased very much. Blood pressure is up a little bit but that's expected with hydroxycobalamine shots.
Please confirm the number of shots for the loading dose. You said you had 7 shots already and will continue for another week so does that mean you had another 4 shots so total of 11 for the loading dose? Then 6 weekly shots and 1 shot every 3 mo ths for life? TIA.
Thank you for your reply. I had very similar symptoms as yours 3 years back, but my diagnosis took an year since no doctor tested me for B12. This has probably worsened my condition, as after 2 years of injections, I still have symptoms. Please continue taking injections weekly and see how you progress. 2 monthly injections will not be enough for neurological symptoms.
Well we are all different but after a week of loading i got some energy back and my hair stopped falling out.
Unfortunately my treatment stopped for a few weeks but I recommenced privately and now SI.
I'm having to continue injections on alternate days for the neuro issues. Has been over 4 weeks continuous now and still really not right so I think I am probably looking at 6 months to a year or more for healing before I can drop down the frequency.
I became b12d due to a diet close to vegan and was prescribed omaprezole a stomach reducing drug which more or less negated any absorption of b12 in my diet.
The first symptoms I had were nominal aphasia, short term memory problems - this got worse over two years then I had blurred vision short vision and long vision and bouts of extreme exhaustion then sudden 10 second events of semi consciousness followed by tinnitus, then auditory hallucinations then the event would end leaving me confused and unable to understand spoken and written language for about a further 10/20 seconds.
Once the injections began most of my symptoms ended pretty quickly but the semi conscious has continued for over five years now.
The tinnitus ended after about 18 months and the Auditory hallucinations after about 30 months. I now just get the beginning of the semi consciousness but nothing else happens - it comes then goes.
These events had a very regular pattern. During my 12 week injection cycle the event occurred between week 6 to 8 and lasted about 7 days with up to 10 events on the first day than reducing until ending and rarely returning although I occasionally had the odd event just before or just after the injection.
Now I am on 8 week injections, I tend to get these symptoms around week 1-3 of the injection but the events are far less severe.
If your treatment is purely pill based, it’s hard to see how your condition will improve. You need regular injections as you do not know whether you have an absorption problem relating to your stomach. You can find out by being retested for b12 as your level should have risen if you have been taking tablets. If your level has not risen then you definitely need injections and will need them for the rest of your life. The aenemia is not called pernicious for nothing!
Wow, you got rid of tinitus is huge. I am taking hydroxycobalamine injections every other day. But planning to take one shot/week after two weeks loading dose. I will continue that for 16 weeks and then one injection every two months for the rest of my life. I am a vegan.
Actually, I couldn't take this one shot per week for 6 weeks because by then the pandemic had started. So, I took 1500 mcg methylcobalamine tablet every day. It's worked fine. Recently, I suspended this daily B12 tablet for two months and did a blood test. My level is 534 which is pretty good considering I am a vegan.
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