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Pernicious Anaemia VitB12 Deficiency ??

Hi All,
Does anyone suffer with Pernicious Anaemia VitB12 Deficiency ? I've been diagnosed with this; and need to go on VitB12 injections for the rest of my life. My cycling has taken a nose-dive in the last 12, month or so; some days I can hardly walk and my energy levels are at rock bottom. I'll probably begin the B12 injections sometime this coming week. Anyone experience this debilitating illness ?? I long to get out on the bike and get some kind of fitness again.

If you have PA, I'd like to hear how you manage it..

If you're new please join in and if you have questions pop them below and the forum regulars will answer as best we can.

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29 comments

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Mostyn | 8 years ago
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You could be correct about 6, injections over two weeks? I just heard 3, injections a week for 6, weeks. then every 3, months for life. I may have miss-heard the information.

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Mother Theresa | 8 years ago
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Every other day for 6 weeks is a bit OTT, are you sure about that? Normal is 6 jabs over two weeks.

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allanj | 8 years ago
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I hope the B12 injections pick you up, looks like there is still stuff to be worked out though so all the best with that.

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Mostyn | 8 years ago
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Well; Got all my blood tests printed out; my B12 was 130 (180 - 900) is what's required - I'm low. My Folate and Ferritin were Low. Red cells raised (Inflammation) Plasma Viscosity was a real concern with the GP. I'm awaiting an appointment at the Hospital Rheumatology Dept. And I'm Beginning a course of B12, injections - every other day for 6, weeks, and every 3, months there after; for the rest of my life.

I do appreciate all the feedback and advise given; I just hope this B12 loading - helps get me out on the bike again..

Regards
M

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alloyd533 | 8 years ago
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Another doctor here but not a haematologist. VitB12 deficiency and Pernicious anaemia are not quite the same condition. Pernicious anaemia is a B12 deficiency due to autoantibodies against Intrinsic Factor. IF is a molecule that is produced by parietal cells in the stomach, binds to B12 and helps its absorption across the intestines. Of course, to you, vB12D and PA will feel exactly the same, they both result in low B12 and therefore a macrocytic (Red blood cells larger than normal) anaemia. However, if you've got PA (and testing for the autoantibodies is a straightforward blood test) then oral supplementation of B12 isn't going to make the blindest bit of difference.

A very good website and trusted within the profession is patient.co.uk (http://www.patient.co.uk/doctor/pernicious-anaemia-and-b12-deficiency)
Regardless of which doctor you see, if you have anti-IF antibodies then you have PA (the test is 100% specific) and you will require B12 injections. A word of warning though, before GP surgeries are inundated with people who think they've got PA. anti-IF antibodies can be present in perfectly healthy (it is not very sensitive ~27%) so even if you're positive for the antibodies, unless you have a macrocytic anaemia as well, you do not have PA (or B12 deficiency).

Finally, B12 deficiency can sound trivial but can be pretty grim (aside from preventing one from cycling) so I would try and get it sorted.

Hope that helps

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bikeclips replied to alloyd533 | 8 years ago
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alloyd533 wrote:

Regardless of which doctor you see, if you have anti-IF antibodies then you have PA (the test is 100% specific) ... anti-IF antibodies can be present in perfectly healthy (it is not very sensitive ~27%) so even if you're positive for the antibodies, unless you have a macrocytic anaemia as well, you do not have PA (or B12 deficiency).

I think you've got this a bit muddled mate.

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Vector | 8 years ago
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I went to the doctor feeling depressed and tired. She took some blood test an i had low B12 and I needed injections of B12. She took another test just to verify the test and the result were ok. But she said that I could take Behepan B12 so I started the ordination and I become a new person. The depression went away and Im no longer tired.

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AJ101 | 8 years ago
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Good luck Mostyn

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allanj | 8 years ago
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That all sounds more complicated than just needing to take a supplement. You are right to keep in touch as you are doing but equally I don't think this is going to be quick to sort out.

I hope it all goes well on Tuesday and that things start to pick up for you.

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AJ101 | 8 years ago
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Mostyn you're spot on, if you're lucky enough to get an excellent GP that has got the time to work with you then great, however the reality of it for me was the GP said just rest up and maybe youre stressed. Anything you can do for yourself that has no risk attached is a good place to start until you can find a professional like Crikey who can take the time to get you fixed up.

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dustyrunning | 8 years ago
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I really appreciate this thread ... but of course sorry to hear about your probs, but I'm learning from them so at least some good has come from your situation.
I'd also found that my mojo was no-go for a while and went to my NHS doc who, after some tests, said that my Vit B12 was a bit low (no figures) and advised changing my diet to B12 friendly foodstuffs and to come off my non-dairy diet (I'd been having only-soya based 'milk' stuff for a few years). Also to take some B12 + CoQ10 tabs to help things along.
I must admit that I've been very happy with the results overall and my mojo is now go and I'm peddling happily again and now seem to have a lot more energy/motivation etc than, say, the previous 6 months or so. Of course as I'm over 60 so I can't expect miracles but I do want to be able to work, rest and play to my full potential. I'm off on the Velothon Wales next month and training hard for that without any nasty 'fallbacks' or boom and bust.
My advice would be to keep on with your doc and drill down on all the symptoms, causes and cures etc - if no joy then change your doctor to someone who listens and genuinely wants to help you. It's far too early to accept an inconsistent and possibly half-hearted diagnosis and prognosis. As per a previous comment, this could be serious .... don't mess around.

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crikey | 8 years ago
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No, it really doesn't.
I speak as a medical professional of some 30 years; don't mess about.

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Mostyn replied to crikey | 8 years ago
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crikey wrote:

No, it really doesn't.
I speak as a medical professional of some 30 years; don't mess about.

Actually it does!! VitB12 is water-based you cannot overdose on it.!! The small amount of B12 that the Tablets will supply will do no harm whatsoever but may help me boost my B12 blood level.. Mine is 136 at present; one GP mentioned that it was dangerously low; and could put permanent damage on the nervous system. Many people take Methylcobalamin Tabs alongside having regular B12 injections. I'm hoping to see the GP that suggested I have the injections, sometime next week.

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allanj replied to Mostyn | 8 years ago
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Right, woah, stop now!

DOI- I'm a doctor but this is not my specialist area.

Have a read of http://www.nhs.uk/Conditions/Anaemia-vitamin-B12-and-folate-deficiency/P... and http://www.patient.co.uk/doctor/pernicious-anaemia-and-b12-deficiency which seem pretty sensible to me.

Keep talking to your GP- this is a complicated area and not just a one stop "you're deficient have some more B12". As the above links say it needs to be worked out:

- Is your B12 level anything to do with your symptoms- there are lots of reasons to be worn out and it's easy to be mislead by a lowish but irrelevant blood test result?
- Is your previous arthritis relevant to this- the reference to "plasma" and sticky blood" sound to me like there is a concern that you have inflammation somewhere- that would lead to tiredness?
- If the B12 is relevant then why is it low?
- If it is low because of diet then easily fixed by a change of diet or oral supplements.
- If it is low because you aren't absorbing it +/- other nutrients properly then you'll need to work out why (coeliac mentioned above + need for endoscopy etc) before you can expect the supplements to work
- If you have pernicious anaemia then oral supplements won't work- it's an autoimmune disorder where you can't absorb B12 so need injections. With a past history of arthritis that raises the risk of this for you.

All of the above is complicated and well outwith the scope of anyone on this forum. It's understandable to be looking for other people's experiences but so often that is misleading and can be counterproductive. This is clearly getting you down and it needs sorted, keep up the dialogue with your GP, make sure your work understand the situation and see if they can facilitate you getting time to see someone at the practice more regularly.

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Mostyn replied to allanj | 8 years ago
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allanj wrote:

Right, woah, stop now!

DOI- I'm a doctor but this is not my specialist area.

Have a read of http://www.nhs.uk/Conditions/Anaemia-vitamin-B12-and-folate-deficiency/P... and http://www.patient.co.uk/doctor/pernicious-anaemia-and-b12-deficiency which seem pretty sensible to me.

Keep talking to your GP- this is a complicated area and not just a one stop "you're deficient have some more B12". As the above links say it needs to be worked out:

- Is your B12 level anything to do with your symptoms- there are lots of reasons to be worn out and it's easy to be mislead by a lowish but irrelevant blood test result?
- Is your previous arthritis relevant to this- the reference to "plasma" and sticky blood" sound to me like there is a concern that you have inflammation somewhere- that would lead to tiredness?
- If the B12 is relevant then why is it low?
- If it is low because of diet then easily fixed by a change of diet or oral supplements.
- If it is low because you aren't absorbing it +/- other nutrients properly then you'll need to work out why (coeliac mentioned above + need for endoscopy etc) before you can expect the supplements to work
- If you have pernicious anaemia then oral supplements won't work- it's an autoimmune disorder where you can't absorb B12 so need injections. With a past history of arthritis that raises the risk of this for you.

All of the above is complicated and well outwith the scope of anyone on this forum. It's understandable to be looking for other people's experiences but so often that is misleading and can be counterproductive. This is clearly getting you down and it needs sorted, keep up the dialogue with your GP, make sure your work understand the situation and see if they can facilitate you getting time to see someone at the practice more regularly.

Thank you AJ, for taking the time to post a reply; it's appreciated. There are many factors that concern the GP about the last four blood tests i.e. B12, count 136, normal blood count 10, Inflammation in the blood cells (red) also mentioned Plasma - sticky blood; there was also other things mentioned, unfortunately I cannot remember all. Dr 1, very helpful and understanding; sent me for blood tests and an X-ray of my chest; that came back OK, but the blood test showed some concerns. Dr, 2, was also concerned with the blood test; and requested further tests of the blood .. Now Dr,3, (appointment with Dr,3, because I couldn't get to see either of the other two doctors) was very concerned with the results; he examined me; and told me I have Pernicious Anaemia; he explained that I'd need to have VitB12 injections to boost the B12 level, then one every 3, months for the remainder of my life. He also requested a re,test of my blood before beginning the injections, When I tried to get an appointment with Dr,3. for results of final blood test and possible start date for treatment! But unfortunately for me; I couldn't get to see either of the three doctors. So had to settle for any of the practice GP's; and of all the GP's at the surgery, there was one I certainly didn't wan't to see (Doctor T) Dr, number 4, He has the attitude that patients know nothing and his eleven years training to become a doctor; says he knows best for every ailment! He did say my Blood B12 level was low; and have the symptoms of Pernicious Anaemia, but as the previous Dr, had requested an appointment with Rheumatology. he thought that was the avenue to take, he then told me that if i'd heard nothing from Rheumatology within 3, weeks? I should contact the surgery again. I don't doubt his ability as a Doctor; but he's reluctant to work with his patients. BTW he's not that well liked by many at the surgery.

Anyhow, I've just been lucky enough to get an appointment with Doctor Number 1, for next Tuesday. I'm hoping for a more positive outcome from that visit.

I've not visited the doctor in the last 5/6, years; but had 5, visits to the surgery in the last month. I know my body well; I've always maintained a good level of fitness; but with this illness; I really need some help.

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crikey | 8 years ago
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'I think I've got a serious disease and I'm going to buy some medicine from Amazon to cure it...'

Have a word with yourself.

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Mostyn replied to crikey | 8 years ago
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crikey wrote:

'I think I've got a serious disease and I'm going to buy some medicine from Amazon to cure it...'

Have a word with yourself.

Ha ha, your a funny guy! But seriously; it makes good sense at present.

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Mostyn | 8 years ago
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Thanks for the replies ,,

I've just ordered some Methylcobalamin Sublingual Tabs from Amazon 5000mcg 60, tabs £14.30 Cherry flavour.

Hope they help..

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Mother Theresa | 8 years ago
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Standard Treatment is 6 jabs of B12 over two weeks then three monthly jabs for life (I have given two today coincidentally). You can't absorb B12 from the stomach due to an autoimmune problem so that is why you can't have pills and have to have the jabs. Usually once B12 replete you should feel 100% again.

B12 lack causes a myriad of Symptoms as B12 is needed where ever vitamin C is needed - which is wherever collagen is needed which is everywhere really.

I hope this helps.

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K Stand Ken | 8 years ago
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I also suffer from Pernicious Anaemia which was only diagnosed a couple of years ago, but looking back I can see the initial "bone-wearying tiredness" developing some years before then. I'm 69 now and no longer have the energy to ride my bike - I was even considering buying an electric assisted bike.
I have B12 injections every 9 weeks, after asking for a reduction in the original 12 week cycle, but I don't seem to feel any benefit even shortly after the injection. I am also diabetic and fortunate to be under the regular care of a very good nurse at my GP surgery for both complaints. I have complete faith in her and the doctors. I was informed I would be wasting my money on vitamin supplements, but if it works for you, who can say it isn't cost effective.
Unlike the first person who replied, I don't suffer from depression but I now have a severe lack of motivation, and not just for physical tasks - I need to think about it for a long time (then ignore it for a while) before I initiate any household refurbishment projects, for instance, new double glazing, building work and interior decorating are all overdue.
Other than the simplest tasks, any home DIY is now out of the question, which is disappointing as I used to be a very keen DIYer. I also took pride in trimming the 30 foot long front hedge, but now I have a gardener to do this.
Sorry for my tale of doom and gloom - I do hope you find some relief.

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Mostyn | 8 years ago
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Thanks guys,

this B12D is certainly a complicated illness; diagnosis is at best a hit and miss type of lottery; depending on your GP's interpretation of blood test results. I'm going back to the Doctor for further consultation about the blood tests.

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bikeclips | 8 years ago
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Hi Mostyn, I know a bit about this subject. Iron deficiency is a common partner to B12 deficiency in pernicious anaemia. Even so, at your age (sorry), you need to have your gut looked at - (a camera in both ends...) - if you have proven iron deficiency. Better to have a gastroscopy (top end) anyway as this allows a look at the stomach lining which is affected in pernicious anaemia (and which is also responsible for the iron deficiency) and you can be tested for coeliac disease this way as well (unlikely). I'm not sure whether your B12 level is actually low but you need a bit of a sort out anyway! Though the rheumatologist can sort all that out, I guess your GP could coordinate things a bit faster?

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AJ101 | 8 years ago
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GP didn't do it for me, went to a naturapath type doctor who was highly recommended and it turned out I had various underlying issues - candida imbalance & leaky gut, as well as a bad diet. Clumped platelets as well (you mentioned sticky blood up there), making it hard for them to get accurate platelet counts.

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Docroddy | 8 years ago
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B12 AND iron deficiency may indicate malabsorption. Get tested for coeliac disease. And you need to start B12 injections.

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Mostyn | 8 years ago
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Thanks for the reply TG,

I'm 67, I no longer take part in competitive cycling or triathlons. I do so still love the bikes and my cycling (only for pleasure these day's) although I was tempted two years ago to do a 25, TT. I knew after that there was no getting back to bike racing.

My blood tests indicate I am severely Vit B12 Deficient - need to see another GP?

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The goat | 8 years ago
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I have not been diagnosed with pernicious anaemia. However last year, about a month after a couple of hours of surgery I was not making a recovery and was exhausted and pretty depressed. The lead into this was pretty stressful which did not help, I'm also over 60 and was begining to think this was my lot. I then read that this these symptoms and B12 deficiency can be common after surgery (the medical profession dispute this). As I was pretty desperate I tried a liquid B12 supplement, I normally avoid supplements. In a week or so things did improve - more energy and all I can say is that I started to have a more positive mental attitude. Now I know B12 is not easily absorbed through the gut and the whole thing maybe placebo effect, but it worked for me. My times are coming down and a new bike is in the offing. I do not take the stuff regularly - I eat well and that should be enough if you are healthy. It might be worth a try before they try to 'fix you'. I hope things work out well.

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Mostyn | 8 years ago
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Thanks for the replies,
My B12 is 136. But I have a problem with seeing the same doctor at my surgery! I've seen four different doctors about this problem. Was told I'd need to go on injections for B12D by one GP only last week; He asked me to have (yet) another blood test. This morning I attended the surgery and was seen by another GP; and would you believe it, He was the one GP (Doctor) I didn't wan't to see! He seems to think that VitB12 of 136 in the blood is low But not that low; and although I have all the symptoms of Pernicious anaemia, he refused to start me on any kind of medication. He has referred me to the Rheumatology Dept at the Hospital. I was diagnosed with Arthritis many years ago. The latest blood test shows no alteration in the B12. of 136. but he mentioned something in the blood test about Plasma, also said I have sticky blood, no idea what that's about? I'm also Iron deficient and the normal blood count is on 10, which is also low.

It looks like I'm going to suffer a bit longer with this illness before getting any treatment for B12 Deficiency; even though two GP's and the Nurse seem to think that a B12 count as low as 136, requires medical attention.

I'm annoyed with my GP Surgery .. I've not bothered them for the past 5/6 years! I dislike going to the surgery that much, I normally try to overcome any illness without troubling them; but now with this illness, I need some help. I really do feel ill; and there's no improvement as time passes.

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AJ101 | 8 years ago
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Suffered B12 deficiency in the past and it isn't fun thats for sure. Injections got me feeling closer to normal again, then supplements - floradix and oral b12, and diet modification - vegetarian with minimal attention paid to protein / b12 consumption previously.

Hope yours is as straightforward to fix.

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Bob's Bikes | 8 years ago
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Just been told by the quack that I have a low B12 count (180 when scale is 120 to 700) so I may have this as I have had same symptons as yourself. Although not for the same length of time as you, I have only been ill and off work, the bike, etc etc for four weeks now.
This vitamin deficiency is also age related as both my parents have to have injections every two-three months.
Also one of the effects of low B12 is depression which does not help when you're already feeling like death warmed up, I am hoping that with the injections my levels will be restored and everything will be better and for you as well.

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