Have been self injecting for some time. Alternate day injections keeps my balance problem under control. Have had more stress added to ongoing problems this year and needed to inject daily for a couple of months.
Only experienced a bit of numbness a few years ago but since beginning of March, have had almost constant numbness, throbbing and tingling in my right foot and sometimes right hand.
My folate levels have always been over range, averaging 23 (range 4.0-20.0). Last checked March 18, was 24.6 (3.9-26.8). Regularly have mouth sores and cracks on tongue but wasn't taking folate every day. Have iron tablets weekly and eat high iron and folate foods most days.
Since this has started, taking 3 mg methylfolate daily and recently added b complex daily. (Seeking health L-5 MTHFR for folate and Thorne Basic B Complex. Folic acid gives me headaches).
Foot is not painful as such but gets uncomfortable. I thought I was settling into a good routine plus T3 sorting out thyroid symptoms well, but now I feel I've really taken a step back. But generally I'm able to do a lot more than before. (More on my profile).
Has anyone else managed to treat one symptom, to then have a new symptom start? Still under a lot of stress and change.
Any advice and thoughts will be greatly appreciated. Thank you.
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Highland49
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neurological symptoms caused by B12 deficiency tend to be symmetrical so it's quite probable that the problem isn't related to B12.
I have some damage to the nerves in my left foot caused by a broken ankle. Whilst it is true that B12 does improve the nerve responses in my foot the underlying cause wasn't B12 deficiency.
I also found that whilst nerves were healing when I was getting sufficient B12 some of the numbness that I had stopped experiencing a few years previously came back for a while - that was in my hands and meant I needed to be more careful for a while about keeping my wrists straight so nerves weren't being constricted when they ran through the tunnel between bones and tendons. After a month or so it stopped being so much of an issue.
Hi Gambit62, thanks for your reply. My back has been playing up recently so I'm wondering if that is connected.
I'm also now wondering if I've been taking too much B6, even though the Thorne Basic B complex contains P5P, the easily absorbable form and in a low dose. I might just be one of those people that can only tolerate small amounts of B6 so I'll stop these for a while. I used to take a b complex once a week but thinking that I need to support myself during this stressful period plus when this neuropathy started, I've been taking it daily, especially for the last few weeks. It might or might not be a coincidence that the neuropathy has become worse in that time.
I also have problems at time with back pain - often back pain is due to to muscle weakness (which can be a symptom of B12 deficiency but can also be a symptom of other conditions - eg hypothyroidism). You may find a referral to a physio for some suitable exercises helps.
I've just had a glitch - my absorption of things sometimes changes without me realising - which resulted in neuropathy in the middle toes of my right foot. A friend who actually lost the ends of a few of her toes suggested increasing my potassium levels which I have done and my toes are now OK. I was getting magnesium deficiency symptoms too and increased that a bit too but think it was the potassium that helped my nerves in my feet.
Be careful with mineral supplements - too much is as bad as too little - but if you need it, you need it. It is probably worth getting tested for your mineral levels, particularly potassium and magnesium.
You may find a broad spectrum multivitamin and mineral supplement is more beneficial than just a B-Complex as it will have all the B-Complex in it plus a balanced amount of everything else you need, including lots of minerals - although a caveat for you is that most of them have folic acid rather than methylfolate as their source of B9.
I'm interested to hear that folic acid gives you a headache whereas methylfolate is OK - it's usually the other way around and just shows how we are all so different. I do know that a few people don't do well with either and need folinic acid instead, and one friend who can't cope with any B9, even in her food, poor soul!
I hope you find a solution soon - don't give up, even if it takes a lot of trial and error - you will get there again!
It's just a shame that when you think you've cracked it, something else happens!
That's interesting that you had a similar problem. I'll definitely up my potassium and see if that helps. I drink coconut water daily so that's easy to increase.
I'm now wondering if I don't tolerate B6 well and only need very small amounts. Although I've been taking a good quality one, Thorne Research Basic B, I've been taking that daily as my balance was worse and I didn't want to start daily b12 injections without having all the b vitamins. Before then, it was weekly.
With folate/folic acid, I couldn't even tolerate folinic acid. Methyl b12 makes my balance problem worse but the effect has lessened after SI hydroxocobalamin b12 for those months.
I've been changing my magnesium recently; for years I took citrate but read up it's not good for stomach issues. But citrate keeps my "hashi's constipation" under control more than glycinate. I might try a blend instead. With multi, I take a NutriAdvanced multivitamin and minerals if I feel run down, that has good forms in.
glad to read you are taking magnesium as that gets depleted with stress amd is needed for muscles to work properly
i would suggest an espom salt bath min of 3 cups for a min of an hour and see if that effects anything. when i was low it decreased my fatigue for an hour or 2
so i started taking 400mg per day instead of 200 as i figured i was getting some in my diet. it made a huge difference after taking for couple of months. and in meantime i took a bath (i switched to deep sea salt because it has a much higher magnesium content) at least 3 times a week.
Tell me about it!! It's like living a roller-coaster, isn't it!
B6 is definitely one to be careful with, isn't it. I assume that you either take your B-Complex or your multivitamin and mineral supplement so that you you don't double up on this.
Maybe you should try your Multivitamin instead of the B-Complex for a bit and see if that helps too? The processes of DNA synthesis, nerve function and energy release that use the B12 all need so many other vitamins AND minerals it is easy to get deficient when the system is working properly, especially if you have absorption problems.
I think I will need to. The numbness and tingling hasn't been as bad since I stopped the B6. I read that with autoimmune disease, you're more sensitive to B6. The Thorne ones only contain 10 mg but there's a theory the P5P B6 is more potent than the pyridoxine hydrochloride. We live and learn!
Yes, I don't like the idea of taking supplements in isolation so would be good to regularly top up with the multi.
I think that sadly this P. A. is ever changing, two years back I had numbness on part of my scalp, one thigh and one cheek, that slowly disappeared, more recently I have numb hands, heavy arms and a numb right foot, but don't feel too exhausted in this time, I think no two people are alike,and much depends on diet, lifestyle and state of mind in the moment!
Thank you Highland49, I'm awaiting an appt re my recent bloods as my b12 was 1713 (197/771)I live in Italy so levels are maybe a bit different to U. K. but all same it's over double the highest figure!
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