New to this forum despite having had PA for 10 years. I have managed quite well on 12 weekly jabs and living a busy lifestyle but have in the last 2 years taken up running having given up riding horses after an accident. I have been training hard since Christmas and at the beginning of May started feeling tired and found it difficult to run (I am used to running 10-15 miles without too much effort) I did a marathon in May and a 18 mile race in June and am now completely washed out. Cannot run and feel weak in the legs and struggling to even walk the dogs. I realise from reading other messages that I am lucky to be able to do this much but I can't bear to give up the sort of running I do as it keeps me sane. (other stuff i deal with ie depression, anxiety attacks, struggling with noisy busy environments might be connected to pa and running really keeps these about manageable)
Anyway my question is that having had blood tests and found to be low in ferritin and folate I am seeing my GP next week and want to know what to ask for and expect in way of treatment. More frequent injections, recommended supplements, self injection? Not really sure what I need and am likely to get.
How do other people manage with tough running regimes and pa and any tips on diet, supplements etc would be great. My running is cross country and up in the hills of the peak district and i find the buzz of covering long miles and the solitude hugely addictive and it is depressing me beyond the thought of not continuing.
Sorry if this is rather a rambling message but any thoughts/advice would be much appreciated.
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susierw
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Hi susierw according to the N.I.C.E Guidelines as you have P.A (and neurological problems) you should be getting your "maintenance" injections every eight weeks - not twelve.
Click on the link below, then on "Scenario Management" and scroll down to "Treatment for B12 Deficiency".
Ask your GP to increase the frequency of your B12 injections and also supplementation with folic acid as this and B12 helps your iron to make red blood cells among other functions.
As to "running marathons" I have to admire your tenacity in wanting to carry on. I've had P.A. for over 45 years and at times I have difficulty "running a tap" and have long ago come to accept that "exercise" has to be self limiting. When I was diagnosed with Type 2 diabetes a couple of years ago and told to exercise (I stand six feet four and then weighed thirteen and a half stones) I nearly laughed out loud. However I bought myself a little mini electrically powered exercise bike I use (sat in my armchair) for twenty minutes a day and on which I can control the speed and duration.
There is a body of research - done by medical schools with specialisms in relation with high performance sports - showing that athletes involved in those sports need more B12 to ensure their energy levels are adequate.
Although you have PA and your ability to absorb B12 is impaired using very high dose levels of B12 orally can sometimes help to keep B12 levels up - so even if you can't get more frequent injections you could try using high dose oral/sublingal as a supplementation regime to see if that helps.
Won't help with the iron and folate - and being low in folate also won't help with the B12 as the two are so often used together. The anaemias caused by folate and iron deficiencies are different - and act in different directions in terms of cell size so interpreting full blood counts can be quite a confused picture if both are present.
If you have PA then its probable that your stomach acidity will be quite low which will affect absorption of other vitamins and minerals and would explain the low iron and folate as well.
I also fiind that running helps me cope with the psychological effects of B12 absorption problems - though not quite as addicted as you are :). However, what really helped with them was having a lot more B12 than the normal treatment regime - nasal spray actually helped a lot and I also use sublinguals
Hi. thanks for the replies and advice. I have been to my GP this morning and she was reasonably helpful with some pushing. She has agreed to do the following
8 weekly B12 jabs instead of 3 monthly
referral to gastroenterologist
Advise taking multi vits
Have another B12 blood test (at my insistence) despite having a jab 3 weeks ago
I have just had a blood test so presume i can now go and get some multi vits. Any advice on the best ones to take that cover all the B vits. I dont really understand how much of these my body actually absorbs anyway. Are normal supplements that i can buy say from Boots or Holland and Barret actually going to be strong enough?
My ferritin levels (37 ug/L) and folate (6.7 ug/L) are low but not too bad. Still seem to have weak legs and tingly feeling in them and my hands. Energy levels pretty dire considering i was running marathons 2 months ago.
Anyway my main question is advice on which multi vits/supplements to get that might be worthwhile but not waste my monies.
I am a runner with PA as well! I have experienced what you have and I am beginning to think it's my iron levels. I was told by my gastro my iron levels were low. I would supplement, but supplementing a multivitamin with iron binds me up. So I am wondering if you or anyone else on this board could advise me if there is any "non-binding" supplements with iron. Thanks in advance!
Hi. I am still struggling to keep going - haven't run since June except a mile or so which made me feel dizzy and wobbly. Am going to hospital in a fortnight to see a haematologist - not sure if anything will come of it. In the meantime I am taking Hema-plex as i am low in folate and ferritin. Gives me a slight stomach ache but doesn't bind me up - if anything the opposite. Not sure if it is doing any good but will hopefully know if i have some blood test at the hospital. I am taking two a day (which was the recommended dose until the EU decided one was enough - according to the chap in the health food shop). My B12 levels were fine when they were tested but that was only 3 weeks after i had had a jab. Due another 3 monthly injection any day but am waiting until after i have seen the consultant so i can see how low they are by the time my next injection is due. Don't know if PA is what is making me feel so low - a friend who is a GP suggests it might have been a virus but don't buy that. I cant understand why i have been fine for years, was running for about 6 months absolutely fine and then seem to have fallen over the edge all of a sudden. Will update once i have been to the hospital.
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and have long ago come to accept that "exercise" has to be self limiting. When I was diagnosed with Type 2 diabetes a couple of years ago and told to exercise (I stand six feet four and then weighed thirteen and a half stones) I nearly laughed out loud. However I bought myself a little mini electrically powered exercise bike I use (sat in my armchair) for twenty minutes a day and on which I can control the speed and duration.
Psychiatric symptoms of PA
PA and oral B12 supplements
Permanent damage from PA?
LOW B12 is not always PA
