Hi all. Iv been si hydro eod for almost a year my b12 was 170. I did not take the advice from a said fb group and only take 200mg of folic acid. I take a b complex multi vitamin and also heme iron tablets 80 mg daily, as my ferritin is 28. During winter months I was taking vit d 3+ k2 and have my bloods done 3 monthly for vit d and ferritin.
My question/ concern here is why do I still feel so rubbish. On the days of my b12, I do feel much more energy but my skin still itches, iv still got dizzy head and after a year I can't say I feel massive improvement.
Does anyone have the same deficiencies as me and are you concerned with the amount of pills/ suppliments that is advised 😌
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Whilst ferritin is a generally food measure of iron status, it is an indicator and there have been instances of iron toxicity as a result of GPs acting on the basis of ferritin without doing a full iron panel.Whilst having a B12 absorption problem does make you more prone to problems absorbing other mineral and vitamins it isn't a guarantee that you will and taking huge doses of some vitamins and minerals can cause problems. Do not take more than 1000mg of folate or 100mg of B6 daily unless under medical supervision. UK upper limit for B6 is much lower than 100mg - think it is about 12.5 and EU IS 25.
It's good to hear that. But for improvement in dizziness in addition to good supplementation and good diet like keto diet (which stimulate nerve repair) it's required to stimulate muscles and also supplement them like iron or other micronutrients like D3 and so on. But the most important part in improvement is to exercise which constrict blood vessels. After injection nerves signal interrupted and related muscle like blood vessel muscle go to relax mode which causes lower blood volume and burning feet effect and dizziness so along with injection and keto diet and proper supplementation exercise especially muscle resistance exercise constrict blood vessels and stimulate them and bulid their muscle by taking back their myoglobin and iron. Iron works to oxygenate muscles. So after workout whey protein shake is so helpful to feed muscle with myoglobin. Even muscle electrical simulator help fir skeletal muscles to get back to normal faster and right away after exercise feed them with whey shake. Since you are taking other supplements like iron then you can get back to normal much faster.
You don’t say how often you self-inject. Maybe you need more regular injections. We are all different . I know people who need daily injections. I need weekly etc etc . It’s good to know that we can’t overdose on B12 .I would experiment with more frequent injections . Your Folic acid supplement sounds fine , as do the other supplements .
Well you really cant do more than that . As we know that an autoimmune condition seldom comes alone , maybe there is something else involved . The most common “companion” autoimmune condition with PA is Thyroid abs some symptoms overlap , but there are 100 others . Worth looking into .
I don't know why medicine, especially, is so full of acronyms! Maybe is part of the "mystique" that is used to try to make it seem inaccessible to us "plebby layman patients"?
I don't think I've ever seen anything quite so comprehensive!
I know the common veterinary ones and there is a table of acronyms available with one of the GP things I can access which has a few but this must have the lot!
I suggest you download the whole PDF. And do so again in future. It is frequently updated.
(I only recently merged lots of my documents into this one as people simply didn't know what documents existed. Now I have two main documents and a few others.)
Thank you. As per, Mr doctor stated that 6 months ago my ferritin was in range at 18. After 3 months I did a private ferritin test that came back 28. Nov I'm due my next 3 monthly test( private) so hopefully it would have risen
Your folate was 57 and Iron as well is 57?Can I ask you what was the dose of iron your GP prescribed?
I have started to take iron on my own but afterwards I'm feeling better. I think even for men takes long time to raise iron. Unfortunately I didn't know that I should take iron and even for folic acid I didn't take it everyday. But from now on I'll do so. But I think vitamin D3 if multivitamin is not enough and some of it's micronutrients can't get absorbed. In the meantime I think methyfolate should be taken instead if folic acid because just methyl of folate can be used in methylation cycle to synthesis methionine for make ATP of cell is a necessity. Now I have stopped injection because I need to raise my iron and methyl folate in order to get rid of their symptoms first which is now mixed with B12 neuropathy, but taking B12 pills for a while. I tried to find quality multivitamin with bioavailable micronutrients but they are so expensive that's why I take seperately each of them which is so painful. No multivitamin I found that come methyl folate it allathiamine or pure omega 3 or k2 and enough D3 in the meantime zinc mangenese magnesium iron can not get absorbed in the presence of calcium. I wish I had enough information regarding iron and folate before starting injection.
My GP has not prescribed iron I'm taking on my own but right away after taking my iron related symptoms improved. I had bad back ache and couldn't stand on my feet but hopefully to somehow improved but B12 problem is still there. My abdomen muscle is like tormented. But I have rheumatologist and internist appointment. Probably something else is involved like fibromyalgia, but I'm not sure yet. My symptoms are mostly muscle related as I was so physically active during b12 deficiency. I have double vision which also related to eyeball muscles. I had severe blurry vision and now is improved to somehow. My dizziness improved but I have some lightheadedness and ataxia specially at night. I want to lower frequency if my b12 shot but I take B12 pills. I'm glad that your ferritin and folate are going well.
Nacpan, so do you have any advice on whether the b6 complex actually helps absorb the b12 used by injection as iv previously been told it won't work without b6 ? Hence the reason I don't want to completely stop my intake
I've not heard that. I think it's just keeping things balanced.
Initially I just had b12 abd it was certainly working of course plenty of b6 in food like milk eggs avocado ect
I carried on absorbing folate from food as 400mcg too much for me as i went above range . Sitting at 12 now.
I started a multivit with the lowest folic acid I could find
I chose a supermarket one alternating with a 50yr + one
Less is more at times .
I think everything works together .
Only supplement if you are deficient .
I bought a vitamin complex for vision.
It had an alarming amount of vt b6 in.
I'm not taking it.
You have to be so careful.
Ironically I couldn't read what was in the 'vision' mix. Someone else read it.
I am eating a little differently.
I've always eaten little and often.
Really have to do that with b12 injections.
So I would just try a multivit with sensible rda of a wide range of vitamins and minerals.
Have you tried eliminating the supplements. I was far worse on supplements and the itching was awful .You just have too experiment, for example not take supplements (b vitamins and folic) and keep a diary for a while. That way you might establish what is causing the problem. Unfortunately we are all unique and what works for one doesn't always work for another.
This would be my plan of action as well. I found out too much B6 mirrors my B12 issues. Journaling out your symptoms and supplements might help you get a clearer picture. Wishing you good health.
Thank you for your advice. I'm afraid that if I cut out any suppliments it will affect my si b12 and it will all be a waste if time. I take the 2 month break form the b complex as advised because of the b6 toxicity. Iv tried adding things and taking things away but I'm no better for it. It's a hard lonely journey doing this alone. Thank goodness for forums like this x
Also. I have a b complex that does not contain b6. It cost a pretty penny so I'm presuming it must be a food brand. How vital is b6 in helping the b12 jabs work. Sorry for all the questions
They will work whatever . The healing process and other nutrients might deplete as not able to absorb them in the right quantity either. Woykdnt I be nice to know what all the leveks were when healthy .??
Not sure if b6 is needed for injections to work, but b6 is needed with folate and b12 to lower homocysteine and that’s an issue for a lot of people deficient in b12.
It is hard lonely journey, and one that is experimental in many ways. This is why I keep a diary, and I dont like taking tablets when they make the situation worse for me. When I just keep to a good diet I find I can eliminate food that doesn't agree with me easier.I found that too much folic acid is not good in my case and never take it unless blood tests are low.
I really can't help as we all are different and have different diets etc.
Sometimes the rate of improvement in symptoms when treating B12 deficiency can be very gradual especially if person was left untreated for a long time.
It took months before there were obvious improvements when I started treatment and I am still seeing some improvement years later.
Perhaps your GP would consider doing a set of iron tests?
Some people have spent more time indoors during pandemic and NHS link below suggests that people who have been spending more time indoors should take a Vit D supplement during Spring/Summer.
Have you tried supplementing with b1? You could get some Allithiamine and see if that helps you. It's fat soluble and is a different kind than the one in your b-complex.
It's done more for me than benfotamine did as far as my neuropathy symptoms go.
That's interesting - my (ex) husband has extra Thiamine and when I fill his pill dispenser up I often take one because I crave the taste - which is often a sign that you need something. I should ask for blood tests for the full B vitamins range but it's so hard to get anything done.
Well done for being cautious and trying things with care and research for yourself.
You say that you take 200 mcg of folic acid - is this just what's in the B Complex? Or in addition to that?
As the processes of cell repair and energy release that use B12 also use a huge range of other vitamins and minerals, if any one of those is in short supply it will limit the working of everything and you won't get the benefits of anything.
Because everything needs to be in careful balance it can be hard to achieve.
As you know, some things are toxic in too high amounts so it is important to use blood test results as your guide to taking supplements. Easier said than got these days, I know!
The best source of everything is your diet - but that's not always possible if you have absorption issues.
Unless you have a specific reason not to (eg you are on anticoagulants, you have hemochromotosis or things like hyperkalaemia), to get a good balance of everything it is better to take a broad spectrum A-Z multivitamin and mineral supplement, rather than just the B complex as the A-Z has everything you need, as well as the B vitamins.
Be aware of what you are starting with in that, and what you are testing short of, and what you really can't/don't get from your diet and go from there.
As a guide, those of us who need frequent jabs usually need a good diet, the A-Z plus extra folate, potassium, magnesium, iron and vitamin D3 + K2 - as a minimum.
A few of us need some additional methyl - I get mine by taking methylfolate.
And some of us just plain need more B12! I need 1.5 mg every day (that's 3x what you have) and I have friends who need more than that - there are several people who have been injecting twice a day for years!
While this doesn't give you any specific answers, I hope it reassures you that there are still plenty of options to try (as well as looking into the other autoimmune possibilities) and lots of improvements to be had!
Hi again deniseinmilden 😊. You say above….’As a guide, those of us who need frequent jabs usually need a good diet, the A-Z plus extra folate, potassium, magnesium, iron and vitamin D3 + K2 - as a minimum’…..
I’ve never seen this written so specifically before & find it very interesting. I have, up to now, been focussed on getting all the nutrients I need from my diet, plus a daily Vit D with K supplement. The last bloods I had done (pre pandemic!) we’re ok. Can I ask how you arrived at this list of supplements please? Was it just trial & error, or have I missed some basic advice? I am sooo much better than I was & have been SI every other day for several years now, but would love to get back to full health & lose the feeling that my get up & go has just got up & left 🤣.
It's a combination of personal experience heading me in the direction of lots of extra research, especially into the greater details that are available these days online in the Kreb's/Citric Acid Cycle, some background knowledge from a qualification in animal nutrition, and helpful input from lots of good people on here and other online resources.
We are all very different individuals so there is no blanket remedy but I have learnt that these are the most common things for us to keep an eye on.
This gives you an idea of how the Kreb's Cycle fits into metabolism... And shows how in depth/bonkers it is....
But if you go into it you will see that it is just juggling and re-juggling the same basic "building block" ingredients into different compounds and these processes use up (from food) and release energy (to power our nerves and muscles) as they go.
You will see that the same basic ingredients are needed to fuel the whole process.
Actually methyl in methyl folate is the only source if methylation process in synthesis of methionine so it's a requirement to take methyl folate and if you Google you'd see it's not recommended to mix folic acid and methyl folate. Some of micronutrients in multivitamin are not bioavailable just through passive way they may get absorbed not actively. Really taking good supplement is a dilemma but variety in diet is so helpful. Fir example even proteolytic enzymes in pineapple papaya and kiwi are important in some muscle recovery after related nerves recovered, because some muscles get damaged during deficiency because if nerve doesn't be functional, muscle loses its myoglobin and iron. Myoglobin causes strength of muscles that's why athletes are recommended to take whey protein shake right after their exercise sessions because it enhances myoglobin level of muscle cells
Some people (around 15% of the population) with MTHFR SNPs cannot process synthesize folic acid which is in most multi and b complex vitamins. They will have a high need for folate too. Supplementing with methylfolate (the version already converted for your body to use) really helped me. B12 and folate need each other. I have MS and had severe chronic fatigue which I manage amongst other supplements with b12 injections every 3 days and mythylfolate drops every day. If I miss I know about it. Hope this helps. I hadn’t realized I was making myself worse with some of the vitamins that have folic acid in. I also stay away from all foods fortified with folic acid.
For MS U think BCD oil should be so helpful or even marijuana is recommended but CBD oil doesn't have any side effects, but finding pure form is difficult.
Alongside all the valuable information above I would keep a food diary because coeliacs obviously have trouble absorbing vitamins and minerals and feel really crap like you do and some people have what’s called silent coeliac disease. Also are you getting enough magnesium the most abundantly needed mineral for every process in the body. Threonate and glycinate being the most gentle but don’t touch citrate as it depletes vits and mins and is used as a laxative.
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Confused any advice 
Advice please so confused
Confused again, do I stop B12 injections ? 
