Just wandering if some of you good folks could give me some advice. I don't have pernicious anaemia according to my GP. I do have the intrinsic factor I believe although I am confused some what when the doc refers to a false positive. Nonetheless, I have ME/Fibro few decades now, as well as Acid Reflux was on Omeprozole for a year before hand but nothing since. I was found B12 deficient 3 years ago (although I have hovered at the 200 mark for years and nobody said anything until I pushed). I was given the booster over a period of days and then scheduled for 12 weeks but it just wasn't enough and so I get them every 8 weeks now and have done for over a few years. Problem is my Folate was also low bordering (although deemed normal) so I took some from H&B. It's increased a little, but my B12 is way over norm only few days left till my next jab. I am worried I might have too much in my system, as now I am getting light headedness and palpitations (not at the same time I might add) although, I get the light headedness when when I am low. Anyone else experience this? Had ECG too but all okay. Doc hasn't told me to have jab now 12 weeks regardless of results. Should I stop taking the B12? I have to say I didn't feel good after the last few jabs, in fact felt awful although none of the symptoms such as zingy feet, numbness, brain strain, confusion etc. Thanks for advice in advance
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Leilani
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Have you had your vitamin d checked most of us with b12d have low vd so ask to get it checked it can cause they symptoms I get monthly injections and my symptoms come back before my next injection. And my levels are staying up have you had an active b12 done because the serum test measures all the b12 in your blood if you are on facebook join the support group they will help a lot with a lot more info. It's. Pernicious anemia /b12 deficencey support group
Hi Leilani - it may be worth checking out mthfr.net. This site is run by Dr Ben Lynch who is a specialist in a very common gene defect that involves B12 metabolism amongst other vital factors. If you have this you may not be able to synthesise the B12 in the injection if it is in the form of cyanocobalamin. Also, no one should be taking folic acid at all - folate should be in the active form of Lmethylfolate. Folic acid is not natural and has to go through steps in the methylation cycle to be useful. Many people lack the cell enzyme to do this. If you would like to see a PowerPoint presentation I have prepared on this subject then please pm me and I will forward it to you. Hope this helps. Barbarj
I have had a look at the presentation, it is very interesting.
My B12 last year was 377 (range 180 - 1100) folate 5.3 (range 3.5 - 20)
I started to supplement with a B12 sublingual spray 2400ug daily, for several months
but developed numbness in my right cheek, tip of nose and corner of lips.
I had another blood test and both B12 and folate were now over range. (I had not taken any folate supplements)
My daughter checked on the internet and found a site called "I love vitamins" (I think it was that but I will need to check) saying too much B12 can cause facial numbness so I stopped using it.
I posted on this site for advice and someone said it may have to do with methylation cycle.
Since I have stopped using the B12 I still get the facial numbness once or twice a week but not as severe.
I would really appreciate if you can throw any light on this.
I have just had another blood test for B12 and folate and I am awaiting the results.
Hi Browny, I'm so sorry but I am unable to answer your question specifically. I do remember reading about serum levels of B12 differing from cellular levels - I've just Googled it but can't find a reference. If you visit mthfr.net it may be on there as you read through posts but I couldn't find it just now. I hope you manage to resolve this!
Ashleyd, no I don't think I have ever had a Vit D test, although, I take Cod Liver Oil when I can afford it which has A and better absorbing Vit D than tablets, and I have to say I do feel better when I take it. I haven't for a while tho. Problem is my doctor is nice and he's supportive up to a point but I always get the feeling that everything is put down to either my existing conditions, hypochondria or stress. As for active b12 unless it's called that specifically no I don't think I have had that either. When you say high, is it greater than 2000? Also do you have a link to the FB group as there a few. Thank you for your advice.
BarbaraJ, thank you will do. As for folate, the only reason I took them was because my results showed, I was just on the lower edge (like I had been with B12) my niece went through numerous test they thought she had MS, turns out she was deficient in folate, one she took folate in tab form, she recovered, so possibly a family trait. I have read the two are interlinked for metabolism. I would love to see the PP of subject, is there a link? Or would you like my email? Thank you for your advice too
I hope you don't mind me asking but what symptoms did your Niece suffer from when she found out she had a folate deficiency.
I have been getting lots of MS type symptoms and my last blood test showed low but in range folate and I was wondering and hoping the symptoms were caused by the low folate.
I have just had another blood test to recheck my folate and B12 level, and I am waiting for the results, before deciding what to do next.
Mainly she lost the use of her legs, she would be wheelchair bound. I don't know the ins and outs as we are not that close, but she was tested for all sorts, mri's, lumber punctures etc and this was private. Finally they saw her folate was low and she took tabs and well she's okay, she's recently had a baby and from what I understand never looked back.
The other thing, is that there are so many things we "could" have, I have spent best part of my life being tested for this and for that. As I read more about the B12 deficiency and the problems it causes, I realise that I could have been deficient all along and I wouldn't have known it. I have grasped at every straw available, to no avail, and it's only because the B12 was so low that someone actually picked up on in the ME clinic, not my own doctor. Now, I am going to have to push again, and it annoys me terribly, because my brother in law is an ex GP, Occi Health Consultant now and he's never really made a fuss. I just don't think it's in their minds to attribute vit deficiency of any kind to extreme ill health? Crazy! Keep pushing though, hope you get somewhere
Yes I agree lots of symptoms can be caused by nutritional deficiencies and G.P's do not pick up on it. My low folate could be the cause of my symptoms.
My daughter was also diagnosed with M.E. with no help from G.P. and we have just found out she is extremely low on iron/ferritin and G.P. only gave her standard supplements which only increased level very slightly. We have since leaned she should have had high doses or even infusions of iron but G.P. never suggested it.
It does seem nutritional deficiencies can have an effect on our health but it seems we have to deal with it ourselves.
Sounds to me like you're not getting enough B12 and folate. I have mine weekly and am extremely well, you can't overdose on it. In fact most of the injection is excreted in urine within a couple of days. And borderline folate actually means deficient because it's a ridiculously low range. Doc should have given you 5mg supplement on prescription. How much of the H&B supplement were you taking? Without folate your B12 jab is doing nothing for you. Forget serum B12 levels they're irrelevant in terms of what's getting to cell level. Also important to check iron/ferritin levels, as B12 won't work without that either.
If you tested positive for intrinsic factor antibodies then you do have PA, it's diagnostic. Don't know what your GP is playing at with that one. Probably trying to find an excuse to stop your injections altogether. Whatever you do, don't let this happen.
Well its very hard to tell if I am getting enough or not, having the ME/Fibro, I get a lot of symptoms from those, and I can't tell which one is which, such as nerve pain etc. The one difference I do know is how my brain functions, when I have the jab, I am wooooohooo for a few days, both energy and mind. Within a few weeks, I start to lack that energetic part but my brain keeps going, until I start to struggle again to think, talk, write etc. Invariably it's a few weeks before jab along with other signs. This past few months, have been relatively stable though, bar the dizzy spells that happens even if I am lying down still, like I am going to pass out (which is what I got before being diagnosed), and the irregular heart beat that sometimes I feel as if it's about to jump out my chest, although that seems to have subsided last few weeks and I have been more balanced. I am a week away from next jab and I have to say I am better than I normally am brain wise, haven't got the vibrations yet either, but headaches are there (could be cold related).
The other reason as well I started taking folic acid was for years I have not been able to taste, on and off perhaps, my father had the same problem, although his was down to a nasal polyp. I have a little tiny one but it didn't explain why I could not taste salt or sugar, i read deficiency folic, and I do have to say, that is the one thing I do have now, my taste back! I have only taken about 50 tablets 400 µg in the past year and none for the last few months. My serum folate (2.8-19ug/l) in April 13, 3.4 ug/l / Jan 14, 6.4ug/l. Clearly the tablets have helped to improve it, but...was it low in the first place and is this still low if so?
Very low folate levels, 3.4!!! Your GP should have given you 5mg folic acid on prescription (that's 5000mcg every day for 4 months to correct a deficiency, followed by at least 5000mcg weekly as a maintenance dose).
400mcg wouldn't be enough I'm afraid to make all that much difference. You also have to really take it regularly. Can you ask your GP for the 5mg?
Show him this recent research, which suggests that the lower cut-off limit for deficiency should be set at 8:
You really need to also ask for a ferritin test, I suspect that will be extremely low as well.
And I hate to question people's diagnoses without knowing that much about them, but all I can tell you is that ME and fibro are often misdiagnoses of PA, and given how poorly your PA is being treated you will continue to be symptomatic of deficiency.
And as you have neuro symptoms you should actually be on injections every other day as per the BNF section 9.1.2 and the NICE guidelines. Check your symptoms against the list:
Don't take my word for it, please do some research and try and join the PAS or read the PAS forum, or join the Facebook Group, and you'll find lots of ME/fibro sufferers who get significantly better when they have the right PA treatment.
Bless you, thank you for taking the time to respond with so much info. As for M.E./Fibro I was diagnosed with M.E. finally after 10 years of battling fatigue and constant illness in 1999. It was by one of the top ME specialist in UK then Prof Findleys team. The fibro pain has just got worse and worse over the years, always had pain in muscles and joints and the rheumatologist put it down to the ME and hypermobility. I always assumed when it got worse it was due to two car accidents of which I suffered muscular injuries never realised that being deficient in B12 could also cause that. As I get older I have found I am less mobile and I am only 45! I just want to start living properly so I hope what you have given me links to might convince my doctor to do a bit more than just appease me with don't worry.
You might want to read Vix's story, you mention hypermobility have you ever been tested for Ehlers-Danlos? I think you might see some parallels with Vix (it's quite long, might need to read in stages):
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