I've had a good trawl of the internet but cannot find anything on whether you can exercise with PA? I'm used to regular exercise and now haven't done anything since July and its starting to show! Also I normally need to exercise for my mental well being.
Taking Ferrous Fumarate 200mg daily and B12 Sublingual Spray daily, doctor will not give me another B12 Injection until October, so still feeling fatigued by about 1pm daily and getting 9hrs sleep daily. Any advice appreciated as I really want to do some training even if it's a brisk walk, but don't want to floor myself!
Cheers Ian
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IanM44
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You will use up more B12 when exercising .If your are getting fatigued by 1 o'clock and are already taking sublinguals , I can only suggest that you get B12 injections more regularly . We can take it as read that your GP will not give you any more B12 injections . The only solution is self injecting . If you are prepared to do this, come back to the forum and you will get all the help you need . I assume that you are getting plenty of folate / folic acid , with which your B12 works . Best wishes .
There is plenty of evidence that B12 levels can be lowered by exericise - some athletes and athletics coaches can be more aware of B12 than most GPs.
Ideally you should work with your doctor to ensure that you are getting the levels of B12 and other vitamins that you need, or at least advise them that you are supplementing - though more than understand the problems that you can hit trying to get a GP to listening.
Was the ferrous fumarate prescribed by your doctor? and do you have an iron based anaemia as well as a B12 deficiency?
An iron based anaemia won't help with exercising as it will affect your bloods ability to transport oxygen but it doesn't stop you taking exercise - just that you might find yourself getting dizzy if you push too hard.
The same is true for the B12 deficiency - so you may need to use more of the spray - or look at another way of delivering B12. It might also be worth looking at what type of B12 is in the spray you are using - think it is probably methyl which doesn't necessarily work best for all people so you might find that switching to hydroxo or adding in some adenosyl helps a bit with the energy levels. The body needs both methyl and adenosyl and some people can have problems converting methyl to adenosyl.
"doctor will not give me another B12 Injection until October"
Have you read the "BCSH Cobalamin and Folate Guidelines"? Is your GP aware of these guidelines (some Gps are not). page 29 is a diagnosis flowchart showing the recommended process a medic should follow with someone they suspect has B12 deficiency. Page 8 gives details of UK b12 treatment for those with and without neuro symptoms.
When was your last injection? How many loading doses did you get when first diagnosed?
In UK people with b12 deficiency with neuro symptoms are supposed to get loading injections every 2 days for as long as their symptoms continue to get better then maintenance injections every 2 months (se page 8 BCSH Cobalamin Guidelines).
Were you told the actual result or did you see a copy? I learnt to always check by getting a copy. Think a lot of people can view results online now. I found that sometimes when I was told results were fine/normal there were abnormal results on the copy.
Have you had a full blood count (FBC) recently? I was wondering if you might have enlarged red blood cells. Do you know what your ferritin levels were when you last had a ferritin test?
Can't really help you about exercise as I do relatively little. Are you a member of the PAS? They might be able to pass on useful info about PA and exercise.
"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency"
He's written other books about PA and b12 deficiency. One of them was "Living with PA" with case histories. I'm wondering if it might mention about exercise as it talks about the impact of PA on people's lives.
"Could It Be B12" by Sally Pacholok and JJ. Stuart is a very comprehensive book about b12 which might be helpful.
I am not a medic just a perosn who has struggled to get a diagnosis.
Do you know what the reference ranges are for your results above? The ref range would normally be in brackets next to results,
The thyroid UK forum might be able to comment on your thyroid results.
If these results were fairly recent then your B12 result seems very low for someone who has already received some injections.
As I said above, in UK someone with b12 deficiency who has neuro symptoms should get maintenance injections every 2 months.
Do you have any neuro symptoms eg tingling, pins and needles , numbness, balance issues, confusion, memory problems etc.
Do you remember how many loading doses you had when first diagnosed?
Did you find out whether you had had a full blood count recently? High MCV and high MCH on the FBC can indicate the possibility of macrocytosis (enlarged red blood cells).
Hi Sleepybunny, that was the blood test results that resulted in me being given B12 injections and prescribed Ferrous Fumarate. 5 loading injections given, last one was around 22nd July. Thanks for the info given I shall take that to my doc in regard to the guidelines. Yes I have neuro symptoms, pins and needles in left hand, numbness in left arm sometimes. Balance, tend to bump into walls at home and my memory these days is shocking to be honest!
5 loading injections given, last one was around 22nd July
Did you have neuro symptoms at the point you were diagnosed with b12 deficiency? doe syour Gp know all the neuro symptoms you have? I gave alist of mine to GPs plus a copy of PAS symptoms list with all my symptoms ticked.
My understanding of UK B12 treatment is that a person with neuro symptoms and B12 deficiency should get loading injections every 2 days for as long as symptoms continue to get better. When the symptoms have stopped improving then a person is supposed to get maintenance injections every 2 months. I think the treatment outlined is supposed to happen whatever the cause of the B12 deficiency is, when there are neuro symptoms.
Has your GP seen page 8 of the BCSH Cobalamin and Folate Guidelines which outlines UK B12 treatment. Do you know why you were not given for those with b12 deficiency with neuro symptoms? Have they seen page 29?
In my opinion, time is of the essence because untreated or inadequately B12 deficiency can lead to permanent neurological damage. Adequate treatment is worth fighting for.
I believe I have suffered some permanent damage because I did not receive the treatment for b2 deficiency with neuro symptoms when I had a confirmed B12 deficiency a few years ago. I had multiple typical b12 deficiency neurological symptoms as well. Like you, all I got was one set of loading doses. I did not know much about b12 deficiency then or the recommended treatment...only found out years later.
The BNF (british national formulary) Chapter 9 section 1.2 contains the info page 8 BCSH Cobalamin Guidelines is based on. Fairly sure that the BNF says 6 loading injections over 2 weeks for those without neuro symptoms so even if GP was not aware of your neuro symptoms, I do not understand why you only had 5 loading injections.
i have pa and exercise using the gym. I haven't ever been tested to know the effects of my gym work, but felt fatigued by the end of twelve weeks and so my GP now gives me injections at eight weekly intervals and I seem fine on this
I had to increase my B12 injections when I went back to exercising. It does use up B12. You might want to try stronger doses of the sublinguals, whichever form you choose. I use superior source methyl 10,000mcgs between injections. I get it from Amazon. I take up to 5 a day, since actually only 1% of sublingual dosage is utilized by the body. You cannot overdose on B12.
While I was never one for excessive exercise (a 7 km stroll, carrying about 10 kg of camera gear, scopes and bins, was sufficient), after PA I could barely walk down the road to the shops (about 0.5 km).
Gradually I started going further, more often (having two greyhounds desperate for 'walkies' helped) but would still find myself out of breath and quite a way from home.
My balance problems make running impossible and my £800 bike, bought just before PA hit, is now retired because I can't stay on it.
Then I remembered that I used to (25 years ago) like swimming, so I went down the local pool and gave it a go. Now I try to do 400 m three times a week. If I get tired I can stop immediately for a rest (no need to find somewhere to sit down before I fall down) - then switch to the slow lane and take things a bit easier. If I'm totally knackered (too long since the last jab) I can stop and I'm close to the car. If I'm feeling extra energetic I can do an extra few lengths - and I'm no further from my car.
It's been a slow journey (500 m is still my maximum in one session) but it's now the dogs that insist on going home, not me.
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