Hi
I have been doing EOD sub cut injections of Hydroxycobalamin for 13 weeks now.
The peripheral neuropathy in my feet has not improved. If anything it might be worse, but that could be from something else.
Have I given this long enough to rule lack of B12 out or do I need to keep going? Some days are worse than others. Today is a bad day. My feet sting horribly today and feel huge, although they are normal looking.
Early days .Keep going .
My symptoms gor worse before improvements.
3 months is still early days? It seems a king time. But happy to keep going if there is hope.
For me 3 months was very early days. Everyone is different depending on how long deficient and how much repair is needed .
Also the severity of symptoms.
Very early indeed. I started noticing slight improvements with some symptoms within the first few months. One step forward and 2 or 3 steps back in my case as new symptoms appeared. And then it got much more complicated and very very scary...but you are not me and your journey will be different.
Ensure you have good folate and iron levels and are taking all of the cofactors. Your recovery will depend on how long you were deficient and how much damage has been done.
Symptoms manifest themselves years down the line, so bear that in mind and don't expect to heal quickly. Impatience, anxiety, stress and fear are your worst enemies - a lethal combo. Do whatever it takes to avoid these triggers and trust the process, even if it feels counter-intuitive at times, and you'll get there in the end.
Hi FancyPants
I would consider going into Every Day for at least a couple of weeks and note what happens. I assume co-factors are optimal?
HNY
♥️♥️♥️
Co-factors being folate? Should be OK as I’m supplementing with separate folate and B complex. What other co-factors do I need to focus on?
Go by your blood results. Vit D
Iron / ferritin
folate
Common to go low .
Check with Gp to get tested if not done.
I got worse before improvements as nerves 'woke up. '
Keep a symptom diary
I've stuck to hydroxcobalamin .
Time for healing is needed
I keep careful eye on those co-factors as they are the same for hypothyroidism. Thanks.
Certain forms do not suit certain people. I did not have a good experience with hydroxocobalamin. Cyano and methyl work much better for me, particularly cyano. Perhaps you can try switching to a different form to see if it helps.
If in 3 months things have gotten worse, then I think it may be worth a try. Note, however, that cyano can be absorbed much less than other forms and that switching especially to the cyano version may need higher doses or more frequent injections when switching, else one may feel the effects of the switch for some time before the body adjusts.
That is about to happen anyway because the Hydroxy was out of stock before Christmas when I ordered and so I have 3 more shots left and then I will be using a different form. I think it's cyano but I'm not sure and it's in a box in the utility room so I can't quickly check. I might move to once a day on those given what you are saying about increasing doses.
13 weeks is still early in your healing. I continued to get worse and did not start to see real improvement until 5 or 6 months. Remember it's the myelin sheath, the protective cover over your nerves that with low B12 became damaged, frayed and exposing the nerve. Once you start injecting, depending on how low you started, it may take many weeks just to get your serum B12 levels up. I started at 70, extremely low, and at three months my serum B12 was just at 189, still low. I think when one is very low all of your cells just suck up that serum B12 like a sponge. Then as your body is repairing the myelin sheath all over your body, additional nerve damage will continue to occur until that protective sheath repair is complete.
For me I was three months into treatment when the entire right side of my body went completely numb. I think that is rare though. Also in my experience once my nerves began to heal it was quite painful. It went from numb to feeling like a thousand minions stabbing me with ice picks.
Anyway keep at it. You will begin to feel the improvement at some point.
Today my neuropathy is pretty much healed with the exception of some residual numbness in my right foot and hand.
Best wishes, Rexz
Thank you for the advice. Wise words. You must have been really scared when your whole right side went numb!
Hi FancyPants54,
From other posts, I am gathering that you have hypothyroidism, Magnesium deficiency, low iron and are taking Vitamin D. Please correct me if I am wrong and if I have missed anything out.
I have put the above for a Holistic Approach. P.A./B12 D should not be considered in isolation. There are so many things going on with just one person.
You are taking a B-complex and as Nackapan says it is early days.
This is because the Nervous System is extremely complex and delicate. It is not a broken arm. If you had some basic knowledge of it, you would understand why it can take so long to heal. We cannot immobilise it or put it in a sling. We still use it when we are lying quietly on the sofa watching a TV program.
Hope that helps.
Happy New Year.
😘
Thank you. I am hypothyroid yes, not magnesium deficient although I try to take some every day. My iron is in range but last time was low end and I have had many years of struggle to increase my ferritin stores to correct levels. That's vital for hypos but hard to do. I am trialing a new iron at the moment so hoping it's doing it's job. I take vitamin D. I am not deficient in it, I take it to be sure I don't be come deficient.
I take B Complex and separate folate.
Magnesium is much needed for the brain, nerves and muscle action. I worked with a private dietician who took magnesium as everybody is a ‘bit low’.
As per usual, trying to measure magnesium via blood test is difficult. As we do not know what is happening at cellular level.
I did have a piece of research on it. It is the ether.
So, you know Magnesium (Sulfate) is the drug of choice for seizures in pregnancy, labour and postnatal.
Good luck with iron. Do you take D3 with K2 ? They activate each other.
😀
Yes I do take D3 with K2. Magnesium I have tried various different types. I have permanent atrial fibrillation and so I'm on Taurine at the moment but it gives me heartburn and isn't helping my AF at all so I will finish this bottle and move onto a different type again. I will perhaps give the sulphate a go. Thanks.
You know your body best. I know very little of Taurine - more homework for me. Magnesium Sulphate, we give intravenously because it is an Obstetric Emergency.
The recommend is Magnesium Threonate because it passes into the brain more easily. You know your body better than ANYONE. I have my own weird reactions, biochemistry and what works for one does not for another.
Right I’m off for a walk to see my water and the birds. 🥳
Perhaps I got the wrong end of the stick sometime ago but I understood that B12 injections needed to be IM not sub cu to be most effective. If so, perhaps this is why you're not getting positive results.Anybody able to clarify?
Wishing you all much improved health in 2024 and positive contacts with GP s
(I live in hope)
I had IM to begin with. Now have both.
IM given if on loading doses at the surgery.
Over the last 5+ years I've written notes.
Fof me little difference if IM of sc.
I was always hoping IM would last longer they don't.
Just b12 seems to go in quicker.
I still have IM about 5-6 weekly as darnt change a thing .
I've seen little written down.
Im just the human guide pig!
Itx not licensed in the UK for SC bug written on the German b12 boxes.
I do however get a NHS prescription yo sc at home .
Always challenged big presently still have it. .so much is prescribe 'off licence '
There are several people here saying that sub cut is just as good, although can be a little slower to get going.
I hope it's as good because I can do it. No way would I be able to stick a needle right into my leg for intramuscular. That makes me feel sick just thinking about it.
Hi FancyPant,
As far as B12 absorption goes IM is a bit quicker, SC is more like a timed release. The reason is that there are more blood vessels in the muscles than there are in the fatty tissue. It may take B12 from an SC injection, something like 12 hours longer to enter the blood. But once you start injecting at regular intervals then, as we say in the US "it don't make no never mind" translated "it doesn't matter". The real difference is that SC is so much easier and pain free.
Rexz
It's the easy and "pain free" that I'm very keen on 
Hi doityourself as Rexz said about the ‘science’ bit but what other factors to consider are ease, comfort and accessibility.
It is quite a stingy injection and people may prefer subcutaneous just because it does not hurt so much, they may have hand tremors or nerve pain in thighs. So, it is much better if people have a choice to be in charge of their Health and Treatment.
Happy New Year.
😀
I do SC because I'm to chicken to do IM! 🤣
Yep!
Thanks all for your comments. One day I'll be brave enough...
Sub-cut doesn't hurt. Sometimes it stings a tiny bit, but it's not a "hurt". You can practice with some water in the syringe and an orange to perfect your injection technique if you want. I just practiced on myself. Took a few goes to get all the B12 out of the syringe into me, but I was soon behaving like a pro.
Continue supplementing your B12. I switched to Methyl B12 after years of Hydroxocobalamin as my blood levels did not improve. I still have neuropathy a year and a half after daily Methyl B12. I will continue with this for another year and see how I feel. After that time if I am still symptomatic I will assume I have permanent damage. I take Lyrica for the neuropathy as I cannot tolerate the pain anymore, it’s destroyed my quality of life. It’s 300mg per day now and praying for improvement. You have a long way to go before you can say it’s not working for you, it’s still early days, keep up with your treatment. Best of luck with it.
Agree with the comments above. High b6 can also be a factor especially if supplementing with the pyridoxine form in your multi B. It might be worth checking what form your taking?
Good point about B6, Cornwaller.
Fancypants, might be worth checking the amount of B6 in your supplements.
For more info, search online for "B6 neuropathy uk".
Hi @Cornwaller and Sleepybunny .
I have checked my Vitablossom Liposomal B Complex. It contains Pyridoxine Hydrochloride 10mg. Is this likely to be a problem? I take this supplement daily to help balance the B vitamins because I am self-injecting B12.
Some people have reported that too much b6, particularly in the pyridoxine form has made their symptoms of peripheral neuropathy worse and that stopping the b6 supplementation is better for them.
Whether this would be the case for you could be found by stopping the multi-B and seeing what happens.
I don’t know if the b6 is a problem in your case but would suggest you consider it as a possibility and investigate. I think it unlikely that coming of the multi-B for a week or two would be a problem unless you have vitamin b deficiencies - for example folate - in which case these could be supplemented individually in place of a multi-B.
I hope this is helpful - I am not medically qualified and the above are suggestions for you to research and consider.
Having read the outcome of medical investigations of the available papers on B6 it looks like doses in excess of 150mg a day up to 200mg a day are the ones likely to give trouble if any. I doubt 10mg would, but I can easily come off it for a couple of weeks to see. I am supplementing folate separately anyway as it was low and now I'm injecting I want it higher for both B12 and thyroid reasons.
I need to keep on a B Complex for thyroid though, so might have to see if I can find one with less B6 if it proves to be an issue. Thanks for alerting me to the potential issue.
Very early days. I have been injecting daily for years and it's working but so very slow for me. I will take any kind of improvement no matter how slow. If I had to inject twice daily I would without a single thought if I felt I needed it.
Check your mthfr genes (TellMeGen for example). Hydroxocobalamin may not work optimal for you. You might metylized kobalamin and Folat.
Hi FancyPants54,
I began SI sub cut at the end of July last year (2022), due to having new neuropathy develop in my left foot, left shin and in some fingertips. I already had neuropathy in my right foot when I was first diagnosed in 2000. I started SI because like many fellow forum members my GP Surgery flatly refused to follow the NICE guidelines of providing EOD jabs where neuropathy presents. So on the advice and support here I began the SI journey. I have found that the beginnings of numbness and tingling in my fingertips has reversed. The neuropathy in my left foot has not got any worse, but no better either (Yet - hopeful here!). No change in my right foot, just as it was.
So, I think in terms of hopeful reversal of symptoms we are at the beginning of the track race.
My main aim is to at least stabilise the neuropathy and prevent it from progressing, thereby lowering my risk of falls or burns or similar accidents which could lead to a more complicated old age! (I'm 73 by the way so want to stay active and healthy for as long as possible).
From my point of view I very much doubt the neuropathy can be reversed in my right foot, but if it does reverse, even a little, that will be a bonus. I think the longer the neuropathy has existed, the longer it will take to reverse, if at all.
So, hopefully if you are younger than me (many people are I find now!!), and your neuropathy is of a more recent nature you might well find progress happens - don't give up too soon, I'm sure you will at least prevent further development of the neuropathy which can only be a good thing.
Wishing you well, and know that we have this wonderful forum as our best friend. 🤗
Thank you. I'm 60 now but this started in 2019. I just kept ignoring it, putting it down to my hypothyroid condition and as it's a symptom for that, assuming it would go away if I finally found my optimal medication dose for that problem! Still looking for that one.
I decided to try injections, despite getting blood levels of B12 high using supplements, just to see if it were a B12 problem. So it's a shot in the dark. I don't have a diagnosis, I just decided to try it.
So many conditions impact upon each other and often we just have to row our own boats! I think follow your gut with the SI, at least we know categorically no harm can be done.
Hi,
It took weeks or even months for me to see improvement in my neuropathic symptom. In my opinion this was because I had been left untreated for many years.
There are forum members here who have been left with permanent symptoms but I think 13 weeks of EOD injections is not enough to know if symptoms are permanent.
What were your neuropathy symptoms like before you started B12?
If you had numbness and are now feeling stinging sensations that might be a sign that nerves are starting to heal.
Many on the forum report that symptoms get worse for a while before starting to get better. Someone I spoke to described it as the nerves waking up after being starved of B12 for a long time.
Might be helpful to keep a symptoms diary. Maybe track up to ten symptoms daily or weekly, score severity and look for patterns in the results. It's hard to see improvement day to day or week to week but might be easier to see it month to month or year to year.
Some people can experience a drop in potassium levels (hypokalaemia) when B12 injections start. If you suspect this then ask GP to check your potassium levels.
I would never take a potassium supplement unless prescribed by a doctor as too much potassium can cause health issues. Some forum members try to eat potassium rich foods eg beans, bananas, nuts, fish etc.
Lots more B12 info in pinned post "Various B12D/PA resources".
Pinned posts are on right hand side of screen if on computer.
I'm not medically trained.
Hi hun, I haven't even done the B12 injection yet but I don't think it will do any good so I've decided to take the pills instead. I figure I'm old and not gonna live many more years and I have enough going on as is
I’ve been doing sub cut immunoglobulin for 15 months now and still not really felt any benefit, it could have prevented it from going worse I suppose, still have numbness burning sensation and extreme sensitivity to cold, my condition which is CIDP was caused by the AZ vaccine
Just curious...has your doctor checked your B12 levels?
what was your b12 before your first injection?
If it was low, you will need b12 injections for a long time before getting better.
If you eat meat, then maybe for life.
I was 190
I had sciatica. Neuropathy in feet and hands esp on the right side.
It took a over a year to resolve.
And yes, it gets worse before it gets better for me meant experiencing full body pain, aching all the way to the bone as your nerve cells regenerate all at once , the pain will be all over. that's your body healing now that it's getting the b12.
That lasted for a month and I felt like skipping doses because I felt like crap but reasoned that skipping would make it worse. So I kept on it. It won't hurt to try daily for a few weeks.
Keep up the injections.
I still do daily after 3 years.
My blood levels were top of the range after a concerted effort using pills. But that doesn't mean it was getting through to cells. This is all an experiment to see if I can improve things for myself as the surgery is not interested.
Follow-up EOD injections
How long I should stay on b12 Eod injections?
GP will only agree to 3 monthly injections unless I have a blood test showing low b12 levels.
