What is a useful dosage for folate, f... - Pernicious Anaemi...

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What is a useful dosage for folate, ferritin, magnesium (and others?) to assist the B12 injections?

Dopey-Grumpy-Sleepy
Dopey-Grumpy-Sleepy

None of the health professionals I have seen have mentioned folate, ferritin, magnesium, or anything else in relation to B12 deficiency, but I've seen them mentioned here as being important. Can anyone recommend an effective daily dosage? I'm sure there is an official list showing required daily amounts, but I'm equally sure that like the "required daily B12" amounts, the other "official" amounts are probably inaccurate and inadequate. I'm getting B12 injections every two weeks and taking large doses of liquid B12, but I still struggle with the symptoms of deficiency every day. Maybe other supplements will make a difference.

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The reason no doctors mention folate, ferritin, magnesium and others, in relation to assisting B12 is that having B12 injections isn’t relevant at all to the need for them.

Taking in more B12 doesn’t increase the requirements for other vitamins or minerals (except for an increased need for potassium for a couple of weeks when B12 supplements are first started).

Depending on the cause of the B12 deficiency it may be possible that absorption of folate and iron in food may be affected by a lack of stomach acid. In which case 400 mcg of folic acid and a low-dose soluble iron (bisglycinate or fumarate) supplement may be a good idea.

As an eminent chemist I am surprised that you haven't seen the full Krebb's cycle that shows that a great number of vitamins and minerals are required alongside B12 for energy release. As body structures are repaired once the vital B12 is available, more resources are required to effect this - you can't build something without materials. This repair can go on for many years, especially as sometimes it is repeated if setbacks occur.

You have seen many posts showing that, as Dopey-Grumpy-Sleepy says, the "one-size-fits-all" official levels are not suitable for many people and I thank you that you, yourself, have reported improvements in your own symptoms when you have tried supplementing at levels beyond what your scientific knowledge suggests.

Are you trying to say that sticking more B12 in the body makes it generate more energy?

Er.... carts and horses, but...

Surely you know that's the whole point???!

Nothing works without energy and my main driving factor is for more energy release within my body for cellular function. Any limiting factor that means that energy release doesn't happen means the system stops working properly.

Or am I totally missing the meaning of your question?

The latter.

You seem to think that just putting more B12 into your body makes it generate more energy. Even when it doesn’t need more energy it just makes it because it’s got so much B12.

Whereas the body makes just as much energy as it needs. And somebody who injects lots of B12 needs just as much energy as somebody who doesn’t.

So somebody who injects lots of B12 needs as much of the other cofactors involved in the TCA cycle as does somebody who doesn’t.

My car needs petrol and oil to run properly and take me from home to the shops. If I have an oil leak I have to add more oil than I would for leak-free cars. But adding that extra oil doesn’t mean that my car runs further or faster. And it doesn’t mean that my car needs more petrol.

I find your response, like some of your other replies to my comments in the past, is unnecessarily rude and demeaning.

I am not stupid and at least I do have respect for others and don't automatically presume that anyone is less intelligent than me and I won't put them down.

I do NOT think "just putting more B12 into your body makes it generate more energy. Even when it doesn’t need more energy it just makes it because it’s got so much B12."

I too have suffered greatly from this debilitating condition and while my mental ability has been seriously compromised by the effects of the damage due to sustained deficiency, I do not expect your attitude from a fellow sufferer. The point of this forum is to be helpful and it is only appropriate to be kind and positive towards each other.

Now...

I hear the valid point you are making about additional supplements not in theory being required if your only, isolated problem is a lack of B12 in your blood stream, but in practice I believe this to be very rare and in fact I don't think I have heard of anyone where this is the case - everyone, including you, seems to report other issues besides.

As far as energy release is concerned a wide range of vitamins and minerals are required for the whole process to occur.

If a deficiency has become bad enough to be detectable there is a lot of damage to cells throughout the body and when the limiting factor (B12) is supplied the processes that use B12 including those for energy release, cell replication, etc, will "speed up" until they are restricted by the next limiting factor. As folate is used most in close conjunction with B12 it is usually the first to be used up and therefore needed additionally. And then potassium and magnesium and iron and almost every other vitamin and mineral in diminishing amounts.

Because the body's mechanisms for supplying B12 constantly and continuously are damaged, the body will forever be susceptible to degrees of damage from a varying level of B12. An injection supplies what is required but then the levels drop until we get a return of symptoms and have another injection.

We are only symptomatic because damage has been done and then things go into "overdrive" once B12 is no longer limiting... And this uses up other resources which become in short supply, and so on, hence why more supplements are needed in an ongoing fashion.

If injections are infrequent and the body's other absorption mechanisms are OK then the resources depleted after an injection will be returned to good levels naturally from the diet, hopefully before symptoms show.

However if frequent B12 injections are needed to keep B12 deficiency symptoms at bay, it appears that additional supplements must also be taken to stop the B12 deficiency symptoms returning because the processes can't work when something is limiting, and to stop additional deficiency symptoms of the other vitamins or minerals that have been depleted.

I'm going to press "reply" now, before I lose this. I can try to edit out any mistakes at a later time but hope you will be kind to me in the meantime.

TY for this well explained answer! I'm with U!

Thank you for your always helpful response.

Many vitamins and minerals are required alongside the B12 for energy release and for repair of the body's structures which is why many people find a broad spectrum multivitamin and mineral supplement plus extra folate, potassium, magnesium and iron can help.

To be honest there are a large number of factors that can affect the amount you need - your absorption levels, your genetic makeup, your diet, how efficient your body is at using resources, how much repair is required, what your background levels are, etc, in addition to how often you need your jabs.

Be aware that one thing can "lock-up" others and some vitamins and particularly minerals can cause problems in excess.

It is worth Googling each of the main supplements to see what the symptoms of deficiency and excess are and to give you a good idea of dietary sources that you may like.

If I was on fortnightly jabs I would take a broad spectrum multivitamin and mineral supplement daily and then try 1 x 400mcg folic acid tablet plus make sure my diet included things rich in potassium, magnesium and iron.

Have you considered increasing the frequency of your jabs? Some of us require them daily to feel well.

To see if you need something record your symptoms in a diary. Add in one supplement for several days and see if it makes a difference. Then take it out again, also for several days and see if that makes a difference. If there's no difference it is unlikely that you need it. If it does and the benefits are repeatable then it is likely that you do need this additional supplement and you can then fine tune the amount you need by adding it in at different levels. Be careful to only make small adjustments and give each one several days to take effect.

I'm sorry these aren't definitive answers but hopefully I have helped a bit!

Good luck with feeling as well as possible!

Thank you for the extensive information. The question that comes to my mind regarding experimenting with supplements is this (and maybe others have a different experience?): My symptoms vary wildly from day to day. I can have a day with no pain and only mild fatigue, followed by a day with intense muscle pain, headache, fatigue etc that are so intense that I can do little more than stumble from bed to sofa and back. I've been unable to find a pattern; sometimes the worst symptoms follow a jab by 2 or 3 days, other times I get relief 2 or 3 days after a jab. Try as I might, I cannot control or even predict my health on a daily basis, so I don't know how to judge the efficacy of supplements (or even of B12 injections, for that matter!).

Ah ha - good point!

I wonder if you may have other conditions that are also affecting your health?

The obvious suggestion is to keep a diary of all your symptoms and everything that may affect you - diet, activity, environment, stress, hormones - and see if you can work out any pattern in time, but as helpful as this is likely to be I know how hard it is to do anything when you are feeling so rough anyway.

If you have read my 2nd reply to fbirder you will see how it is possible to feel more rough after a jab if your levels of supporting supplements are low, or good if they are high, and this can be due to variations in the nutrients that your body has got from your diet or by fluctuations in your body.

It may well be beneficial to take a daily broad spectrum multivitamin and mineral supplement and try a while where you even out the other variables as far as possible - at least have a diet that provides a full mix of main nutrients each day, try to regulate your activity levels and (the easy one - not!!) be aware of your stress levels and see how these are affecting you.

On this note a couple of Fridays ago something stressful happened and then on the Saturday I accidentally had a long day and overdid things. I have been really struggling ever since - needing loads more sleep than usual, more nutrients and then less and then more again. It's a nightmare to try to balance everything back out again and I know I will keep feeling terrible until I do and it all settles down again. It's all about managing it - and that's less easy when everything is haywire!

Be aware that if your B12 deficiency is autoimmune then you could have other conditions and all of them seem to have remission and relapse phases, just to complicate the issue!!

I'm experiencing the same problems, but I also have B6 toxicity (P.A due to antibodies parietal cells) and DNA MTHFR homozygous polymorphism and seeking help but neither my GP nor my GI knows what to do. Not one day is alike and some days I feel like having the flu but it is not actually the flu. Been getting injections (hydroxo) for 2 months now, but I'm not getting any better :/ Docs refuse to run another blood test, last blood test was done in March 2018, I've been begging for a new blood test but they say it is not needed...

Hi Pearl. I'm so sorry to hear that you're having a typically tough time with not only the deficiency but also the medical "help" you're receiving. As many times as I've read it on this forum, it still breaks my heart every time I read that a doctor won't increase injections or administer blood tests. I think DeniseinMilden makes a good point about other autoimmune things going on, with remissions and relapses complicating things. I have Hashimoto's and Chronic Epstein-Barr Virus, which has symptoms similar to the flu, so it's nearly impossible to know what's causing difficulties at any given time. When I started getting treatment for B12 deficiency 2 years ago, my level was 150, and I felt a bit better for only 2 weeks, and then no improvement for about 4 months of once-a-month injections. After that, I gradually got better, although generally speaking, no one day is like another. But based on my experience, I'd urge you not to give up hope if you're not yet seeing improvement. Maybe your improvement will come soon. I hope that you can get the help that you need.

D-G-S

TY so much for your encouraging words :) Our body is a very complex bio-chemistry machine...one I don't fully understand ;) It is just sometimes really scary to feel all of these symptoms and not knowing whether it is a good sign or a bad sign. No one can assure me it is part of the healing as my GP and GI never dealt with someone who has B6 toxicity, P.A and MTHFR so they rather push me away instead of helping, as they don't know how to help me. But it leaves me with tons of unanswered questions and gives me anxiety and sadness...But there are many people here who suffer the same, so I know I'm not the only one...xx

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