Hi and thanks to all who responded to my first ever anywhere post yesterday.
One recurring theme in your replies seems to be that I need to think about supplements whilst receiving injections for B12 deficiency.
I had heard some mention of iron, potassium and folic acid, but I'm not sure if the requirement for these, or other supplements, is universally applicable?
I am B12 deficient, but not anaemic. Ferritin (76) and folate (8.6) were within range as was potassium, calcium, vitamin D and everything else tested. Would I be right in thinking that iron and potassium at least will only drop when B12 treatment starts in the presence of anaemia due to them being used to make new red blood cells? In my mind I'm wondering, therefore, if it's not an issue for me as I'm not currently anaemic (presented with neurological symptoms). Does the non-anaemic B12 deficient person need any specific supplements?
Also, I just wanted to ask what, if any, are the recommendations for trying to do some exercise to improve strength/help with neurological symptoms (fatigue allowing)? I'm not talking going to the gym or doing a triathlon, but just trying to do something which may be beneficial. Or could it be harmful to try? What do others do?
Thanks!
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Embra-girl
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I and others on the forum take a multivitamin. Some also take an additional 400mcg tablet of folic acid. I was taking both but since a recent blood test showed my folate level to be 19 (top of the range was 20) I usually only take the multivitamin now.
I’m sorry but I don’t know enough about ferritin levels to comment on that. During my first year of injections my potassium level did fall slightly below range despite me making efforts to eat potassium rich food sources but that’s been fine ever since.
Regarding your question about exercise, I think the main thing is to do what you enjoy and what is comfortably within your limits. As you suspect, it’s not the time to start training for a triathlon but if you have the energy and motivation to exercise do it, don’t go mad and enjoy it. If you find afterwards that it was too much take time to rest and recover and the next time do slightly unless until you find the right level for you. Always listen to your body and go with how you feel rather than what you’ve scheduled in.
I cycle and use the gym and gradually built up my fitness to pre PA levels over 2 or maybe even 3 years. Slowly, cautiously but safely.
Exercise with health (rather than fitness) as your goal and you shouldn’t go far wrong.
The consensus certainly seems to, at least, opt for a good multivitamin supplement, so that's something I'm definitely going to research and do something about.
I think your exercise advice is spot on and what my common sense self was thinking, I just wasn't sure though. It is frustrating though, as prior to this I had a really good level of fitness and had worked hard and consistently to achieve. It's hard to see it slip away, but reading all the responses here has encouraged me to do something again, just not what I did before!
I feel your frustration but take it slowly and there’s every chance of getting it all back. After a couple of years or so I think I was back to where I’d been and now, 4 or 5 years down the line I’m probably fitter than I was which I’m pleased with as I’m older and so should be losing fitness.
When I look back I was super fit up to 2005 when I ran a marathon in a great time (for me) at the age of 45. Within weeks I couldn’t run to the end of the road without being breathless and out of sorts. After a few months the Dr diagnosed an overactive thyroid and that probably took about 18 months or more to (mostly) recover from. In fact, I’m not sure I ever fully recovered my previous fitness after that but I now suspect that the PA was probably triggered around the same time so that over the next 10 years my fitness gradually went down hill. I made many excuses; getting older, divorce, menopause. Then the B12d was discovered and for the last few years since I’ve had the injections everything has been on the way up. I did my best time ever this year for a 100 mile cycling event I do each year and though I say it myself (no one else will 😆) I did an amazing time for a 59 year old woman.
So there is hope and light at the end of the tunnel. Be patient and stay within your limits always.
There's no way I could achieve your fitness level, even without B12 deficiency!! What you do is absolutely amazing and totally inspiring. You do give me hope that I may be able to get back to what I was doing before, but it's obviously going to take a long time - months or even a year or so. I guess with being diagnosed fairly recently I'm just finding it hard to come to terms with having this condition and all it means.
I've exercised, more or less with the occasional lapse, all my life. After struggling with hypothyroidism (diagnosed at 46), which took 2-3 years to stabilise and hitting 50 I decided to make a commitment to exercise, fitness and looking after my general health. Like you, any blips with health and fitness I just put down to age, menopause, could it be a thyroid or any of the other nonsense life throws at us. In hindsight I've obviously been bumping along the bottom with B12 and 2 months ago I just went over the cliff. I had been saying to my husband for quite a while that I felt something wasn't right and that the way I felt just wasn't normal for 54. I was right (the same thing happened when thyroid problem picked up), so I think the body does definitely tell you if somethings wrong or you're doing too much. Things now make more sense.
Anyway, thanks again for sharing your experience and for helping me to feel more positive - much appreciated.
I agree with JanD236 . Yes, you can exercise, but do it with your holistic health in mind rather than specifically to become fit, so start off gently and slowly and monitor your health and how your feeling. Then increase bit by bit. I made the mistake several times of doing exercise that was too much too soon (I used to be very fit, so was easy to go back to the old training patterns) and suffered with a relapse of VitB12 deficiency symptoms. Thing is, I could exercise all week when I was feeling good thinking I'm back to my normal self, only to have the relapse a week or so later. So instead of day by day, I bite of small chunks week by week or even longer and monitor for a month or so, if feeling good, then maybe increase a bit more. It became quite clear that even though I was feeling better, my body was still quite fragile and still repairing.
My B12 was the only thing I was deficient in, all my other tests were all within range. Therefore didn't see the need to supplement with multivitamins, etc. I did try supplementing but made no difference and in some cases, felt worse.
Thanks so much for getting in touch. Your comments on exercise are so helpful and interesting. Like you, I know for me the temptation of trying to get back to old training habits would be very tempting on days I feel 'better'. I was wondering if I would pay the price later for succumbing and you've just confirmed my suspicions! It is so disappointing and frustrating though, but I'm starting to realise I'll just need to accept my new reality and work with it. Slow and steady is obviously the way to go now...
Thanks also for the comments about supplements. I'm certainly going to look into it, but it was interesting to know you felt no benefit.
You are quite right and everyone is different with different requirements however the processes of cell repair, nerve function and energy release that use B12 need lots of other vitamins and minerals to work properly which is why a broad spectrum multivitamin and mineral supplement is often good alongside your jabs, particularly if they are quite frequent.
Folate works directly with the B12 and, especially during times of significant damage repair (eg at the beginning of treatment like you are), this can be used up more quickly than normal and your levels can drop. For some people the same applies to potassium and magnesium which work together and are particularly important in nerve function.
Iron can get used up faster than normal when new red blood cells are made and an added complication is that if the person's B12d is caused by low stomach acid this is also likely to lower their iron uptake which is why iron is mentioned. If you are not anaemic then you do not need to take any beyond that in a broad spectrum multivitamin and mineral supplement but be aware of it.
Most people manage to get enough potassium and magnesium from their diet if they are careful to ensure they consume plenty of things that are rich in these - look them up online to find out what dietary sources you might like.
They only stay in the body for a short while and so we need a regular (daily) source of them. Even if you tested OK for them last week you could be becoming short this week.
Because they are important in nerve transmission they play a big role in muscle function as it is the nerve impulses that make your muscles contract. If your nerves don't "fire" properly it makes the muscles weak. If they misfire or don't fire this causes the odd sensations we unexpectedly feel, including things like paresthesia, eg pins and needles and this can lead to neuropathy.
Because you were mentioning nerve problem symptoms it is worth making sure you have a diet rich in these minerals.
Hi deniseinmilden and thanks again for your input, which is so useful. It all makes sense and I'm just really keen to do all I can to support the treatment I'm already getting with the injections and to hopefully optimise nerve damage repair. To be honest, I can put up with the tingling and burning pain, it's the muscle weakness, jelly lead arms and legs I can't stand. It's just plain weird, as well as being frustrating and frightening.
My diet is already pretty good, but I'm going to do a bit more research and look into supplements too.
All my levels were good at the start. I'm also was not anaemic. Only it seemed b12 had dropped to 106.
Your ferritin is at a good level. Mine was 61 at the start. For some reason dropped to 29 even whilst taking iron after first drop to 33. My folate was good. Didnt need to supplement as when i did wother 400mcg it went above range! Vitamin d I've had ti supplement to maintain a leveks 50-70.
Do as others say everyone is different in how your body absorbs what vitamins and how your body uses them.
I personally take vitamin d (did so before b12 defiency ) I aksi take a supermarket broad spectrum multi vit omega 3 and prescribed iron.
Yes it's best to get it all from food. My diet is very good. Home grown veg ect. Am a meat eater so very varied. If you cant absorb though you need extra. I've not touched alcohol and tried to reduce caffeine to help .
The main thing is to have a blood test after a few months of treatment to make sure your present levels are maintained.
Thanks Nackapan. I'm definitely going to look into supplements. Didn't think about having blood checked again in a few months to make sure everything maintained, so thanks for that!
As for exercise you are doing well to even think about it. I used to cycle everywhere. Swim and walk.
I lost a lot of weight initially si made me extra weak and bed/house bound.
I started with cawthorne pysio for vestibular disturbance ad virtigo.
Progressed to walking in a straight line.
A year on today! I csn push a trolley for food shopping
Walk about 1/2 mile . I still stay in a circle as legs and weakness can be unreliable.
So do what the others say .
Just dont push too hard. I tried to push through a few times as is my nature but it was not helpful.
Pacing is very important. I find that frustrating as if I get a bit of up and go I just want to get on. Then really struggle again with headaches and head pain.
So listen to your body try and have regular food and regular bedtimes ect
Thanks for the exercise advice. You sound like you've had a terrible time, but sound like you've made some progress. You must be so frustrated.
I think what you say about pacing is key and this has been mentioned by others. I know I'm going to have to accept this new 'normal' for me and try to make the best of it. It's going to be very hard although it's early days and adapting to new circumstances doesn't get easier with age!
some people find they need supplements - others don't.
PA is an auto-immune disorder of the gut. Whilst its most significant effect is on the absorption of B12 it can also affect the absorption of other vitamins and minerals
too much iron or potassium can be dangerous so unless you are acting on the advice of a medical practitioner I wouldn't advise supplementation beyond the levels in multi-vitamins.
Too much folic acid can also cause problems - definitely avoid amounts greater than 1000mcg.
Exercise is important generally - if you feel you need support with identifying the correct exercises and your GP isn't of any use then a physio might be able to help but I manage stretching exercises, jogging, cycling - play bowls ... no reason why you can't have an active life.
Thanks so much for your reply. The information about supplements, along with comments from others, has given me a lot to think about. I'm going to look into it for sure.
As for exercise, I'm encouraged to hear you have been able to maintain an active life. As others have said pacing is key as is listening to my body. Easier said than done, but I'm getting a better idea now of what I should be thinking about and doing. Thanks again.
section on derivation of recommendation for upper daily limit for folic acid supplemention= 1000mcg
Both for PGA and the synthetic reduced folate compounds, no systematic toxicological evaluation has been reported and/or is available. However, adverse effects have been reported for folic acid. Based upon these studies the following safety issues have to be considered:
- modification of vitamin B12 deficiency (pernicious anemia) symptoms due to folic acid supplementation:
1) masking of haematological symptoms,
2) exacerbation of neurological symptoms;
- epileptogenic and neurotoxic effects of folic acid;
- decreased efficacy of folate antagonists used in chemotherapy;
- potential adverse effects of folate supplementation on zinc absorption and status;
Thanks much. I need to figure out whether to ask for a Folate test while still supplementing with folic acid 230mcg and metafolin 200 mcg. a day. I tried to stay off for two days, but felt so terrible! I get terrible anxiety about all of this!
I definitely wouldn't worry about taking moderate doses of folate.
It is recommended that women of childbearing potential should take 400 mcg of folate a day. So your 430 mcg will be fine. cdc.gov/ncbddd/folicacid/fe...
Thanks, my Folic acid was high 94 (5.6-56) in January. That is why I am concerned in addition to having more symptoms, erratic heart rate, etc. starting this summer.
It seems like the increase in neurological symptoms can happen both with too much or too little folate. I am getting some of that with feet tingling, also getting itching, erratic heart rate, unusual yawning, increased leg and general weakness, foggy cognitive functioning. It is very hard to figure out what causes what, especially when I am feeling so crummy, but you folks know that!
Not everyone fits neatly into the parameters they use to judge you if you are/are not anaemic - or what ever. If you can get your results I would recommend having a good look at them and anything that is near their cut-off lines do some research on. I have been told I am not anaemic but when I look back at my results there has been several time I was over or near their line. I was told I did not have an MCV problem but again when I looked it had been hovering close to the upper limit most of the time and then I find that in other countries the limit has been lowered, and then watch a video about B12d that recommends it should be even lower. Some people are "average" and cope well in the "system" If you don't - if you are not making the progress you want - then you will have find out why. Good luck
Thanks BirdlessBox. I'm learning quickly about all the things I need to be thinking about and taking into account, so your comment is really useful. As with everything in life the only person you can truly rely on is yourself, so taking responsibility for this is something I guess we all need to do as best we can, helped hopefully by the support we can get. Luckily I have good family and friends (although I think they're struggling to grasp what this feels like), a fantastic GP, which is a massive plus and this forum! Thanks for sharing your experience - much appreciated.😀
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Supplements alongside B12
I've got PA and wonder if I need any other supplements other than B12 shots.
why am I B12 deficient?
B12 loading doses feel terrible
B12 injections 
