should I be starting on a B complex? I had iron infusion end of May and have been on EOD B12 injections since then. I am also taking folic acid 5mg every day and a spray vitamin D & K.
I have been reading that some people take a B complex, but the one I saw also has folate in it and don’t want to overdo the folate. What is peoples advice?
Yes folate will be in a b complex .5mg is a short term high dose if you are deficient .
I'd wait until that prescription has finished before taking a B complex .
I took a B complex .
Then a multivit instead which ususlly has 200-400mcg of folic acid
And 14mg of iron.
My ferritin level dropped in the loading phase .
So going by blood results prescribed ferrous fumarate 210 .
Common things that can be low when B12 low are,
Vitamin D
Ferritin
Iron
Folate
You're already overdoing the folic acid. Remember that 5mg folic acid is 25 times the RDA. You can't even convert that much folic acid into the functional form at one time (there is a physiological cap) so all you're doing is building up unmetabolized folic acid, which could potentially affect B12 availability/function.
Remember also that the normal intake of folic acid throughout most of history has been is zero. Why are you slamming your body with massive amounts of something its never seen before and does not how to deal with very effectively? Would you do that with a medication? I doubt it.
I was advised on the Pernicious Anaemia Facebook page to take 5mg of folic per day, as per their protocol. It is all so confusing, so many different lots of advice. I was on methylfolate as I felt that folic upset my stomach, but I was feeling very tired and lots of aches and pains so was recommended to go back to folic every day.
I would advise not to blindly follow "protocols" which those asking you to follow cannot explain.
What was your folate blood result (if you've had one)? I saw the Cambridge specialist and he advised I take 5mg after each injection (currently EOD) as my folate was 4.0 ug/L (range 5.4 - 24.0). I am due bloods next week and I expect that he will advise I decrease or stop this if my levels are in the normal range again. My GP originally gave me two month's worth of 5mg folic acid to be taken after my 6 loading doses, but that's all gone out of the window now I've seen the specialist. It seems like 5mg is the max dose, if you're deficient, so perhaps look for a B-complex without folic acid, and then you can easily stop the seperate folic acid tablet when needed. Good luck with it all, it can be a nightmare to understand, especially with the brain fog!
Thanks, Dr K also told me to take folic EOD with injection, so I will go back to his advice. Everyone seems to have differing opinions. My last folate in March was 4.7 (range 3.10 - 19.9). I am due another blood test in August to check levels and then report back to Dr K.
Same here, but my follow up tests are next week.
I have just done a folate test with Blue Horizon, and these are results, so looks like my folate levels are back to normal, which is good. I will still get GP to do test in August anyway.
here is screen shot of recommended protocol
Nevef heard of this protocol. Who devised it?
Go by your blood results .
We are all different and need different doses .
Different frequencies of b12 .
If your folate in good range you do not need the high dose.
As i mentioned its prescribed short term of you are deficient .
I was defificient initially.
I only had 400mcg daily
On my next blood test 3 momths afterwards was above the top range !
So reduced the dose to 200mcg every other day.
Blood results will tell you what you need in the main.
What reasoning exists (or does not exist) as to why anyone should follow this protocol?
It’s the protocol set by The Pernicious Anaemia Facebook page, in conjunction with the PA website. My folate was low range before start of injections, so this is what was recommended by consultant. I am due to have my bloods done in August to check levels. So I guess if my folate level has improved, I will reduce dosage.
The PA website doesn’t recommend a particular level of folate supplementing though. It does mention that folate, iron and B6 are cofactors with B12 - in that they all require each other to work well. But I couldn’t find anything that mentioned a strict regiment of supplements, just to make sure to monitor those levels.
I was looking because I am in that group and I started feeling really ill while taking the 5mg of folic acid everyday. Surely not everyone would require that amount? When we all need differing B12 injection frequencies? And have different body weights, heights, and different energy outputs?
Be careful if you take a complex as over fortifying with B6 can cause severe nerve issues
I found that my folate and ferritin were initially 'blippy' and unpredictable. Probably for a couple of years.
Because my gums were bleeding and my hair falling out, even after having B12 injections on the usual regime (6 loading, then every 3 month maintenance), my GP found that both folate and ferritin were low and I had 3 months treatment for both. Then I was retested - both levels improved -folate, as with Nackapan , was over the top limit (>20) so above the range. Ferritin just above 60 ug/L - below which point GP thought symptoms likely. Later the Oral Medicine consultant I saw re. angular cheilitis and burning tongue wanted me to be above 80 for ferritin. This was a little harder to achieve and regulate.
My GP monitored my folate and ferritin regularly to ensure both were at healthy levels. She would supply printouts of blood test results and tell me when I needed to supplement or when I needed to stop supplementing. At one point, folate needed more than the usual 400 mcg, so I took 800 mcg for a while. Later, the level stabilised, and I could drop down to 400 again.
I am not able to recognise when levels of ferritin and folate are high or low, what symptoms I could attribute specifically to folate, ferritin or B12 deficiencies. I only know when blood test results reveal what is lacking and then I can adjust with supplements. I do know it won't be evident in serum B12 as I inject twice a week, and GP did not retest after diagnosing me with functional B12 deficiency and restarting my regime with that frequency.
Vitamin D I get on prescription with Raloxifene as I was found to have osteoporosis of the spine. This has been reduced to osteopenia. Yes, I also take a K2 tablet daily. Again, I would not be able to tell if my vitamin D was low or my osteoporosis had returned. This requires monitoring too. I am awaiting my latest Dexascan result and vitamin D is checked in regular blood tests, alongside ferritin, folate, thyroid - but not B12, as this would be pointless (and go against medical guidelines).
I still have some residual deficiency symptoms (probably B12) that have no pattern either in severity or frequency. No other cause, either alternative or additional, was found by any of the consultants that I have seen over the years since my diagnosis.
We are all different and what we require to get as nearly as possible back to our selves varies - why wouldn't it? - so it can take a while to discover what works for you personally. Having a GP who sees you as an individual can be invaluable.
What type of b complex works better?
is it normal to feel somewhat disoriented(?) after taking b-complex?
B complex vitamin
B Complex supplements. 
Vitamin B complex
