[Mostyn]

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..

Topic

[Mostyn]

You could be correct about 6,
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.

[Mother Theresa]

Every other day for 6 weeks
Every other day for 6 weeks is a bit OTT, are you sure about that? Normal is 6 jabs over two weeks.

[allanj]

I hope the B12 injections
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.

[Mostyn]

Well; Got all my blood tests
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

[bikeclips]

alloyd533 wrote: Regardless

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.

[alloyd533]

Another doctor here but not a
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

[Vector]

I went to the doctor feeling
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.

[AJ101]

Good luck Mostyn
Good luck Mostyn

[allanj]

That all sounds more
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.

[Mostyn]

allanj wrote:Right, woah,

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/Pages/Diagnosis.aspx 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.

[allanj]

Right, woah, stop now!
DOI-
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/Pages/Diagnosis.aspx 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.

[AJ101]

Mostyn you’re spot on, if
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.

[Mostyn]

crikey wrote:No, it really

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.

[dustyrunning]

I really appreciate this
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.

[crikey]

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

[Author]

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