After reading through your posts about all of you feeling awful most of the time, I am wondering if it's a mind over matter .as well. Brains are usually good at picking up on moods and join in. Before my last B 12 I had a blood test, and was told That I was stuffed with B 12,,,, so, I did ask if another injection was necessary, and was told Yes.
I did wonder why, as the B is hanging around and doing it's job, and I do not have any of the symptoms (thank goodness ) that you all seem to suffer. I suppose ,correctly or not ,that the condition can go away ,as mysteriously as it came. Has anyone ""Got Better "??
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squeeler
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Many people have Pernicious Anaemia , and manage perfectly well on 3 monthly injections of B12. But a large number of people with P.A. cannot manage on that dosage , and their symptoms start returning. Some within a day , few days , a week — and so on . But their doctors will not increase their dosage to allow them to be symptom free . Why some people need more than others has not been researched , but our marvellous chairman Martyn Hooper is trying his best for this research to be done . In the meantime those PA patients either suffer , or self -inject . This forum is really for us to advise , help and support each other in what are often very distressing situations . So that is why you find so many people bringing their problems with PA to this forum .
No, the condition will not go away , and as it is an autoimmune disease , it seldom comes alone. For instance auto-immune thyroid problems often go hand in hand with PA . You can be born with PA , or acquire it overtime , but mostly over 60 , and mostly females.
It’s certainly not “mind over matter” as you put it ! It sounds to me that you are one of the fortunate P.A. patients who benefit from a three monthly injection and that your doctor knows that your injections should not be discontinued just because your B12 serum reading is high . You can be very thankful for that, because some doctors would discontinue injections then , and PA patients eventually become most unwell again as the symptoms return .In actual fact , P.A. patients on injections need not be tested again for B12 because they will always have a high reading .
The lucky P.A. patients who are kept well on a 3 monthly injection , rarely appear on this forum , because they don’t really need us .. I came here when I was in desperate straits , because my symptoms returned so soon after injection . Diagnosis is also often a huge problem because a commonly used test (I.F.A. test) is very unreliable if one is tested as negative. .But our Pernicious Anaemia Society is doing a lot to get more light shone on the various problems surrounding the disease . Members often contribute to help us to get our case put to the authorities etc.
I’m glad you came on the forum , and I hope that I’ve converted you from thinking that it’s a case of “mind over matter “ when we air our problems with PA and it’s treatment .Best wishes .
Thank you for the info. Although I may seem a little blase about no active feelings of being unwell with this problem, it's purely because I started the injections 3 years ago, and the only visible signs of "Being Better " was that my nails no longer looked like crumbling walls.as they had always been super strong, which they are now. As a qualified Wrinkly I do have other What's This now, attacks on my various internal and external body parts. Bit like an old car needing an M.O.T I do have a sense of humour ,somewhat lateral ,usually directed at myself over these "THINGS "which probably keeps my head focused Working on the principle that if I am vertical ,,,,I am O.K Visiting G.P's is my very last resort.,for anything As a Gemini,,, I do have the affliction of asking questions, lots,,,, and you seem
to know the answers,, So, to coin a phrase ""I'll be back"
Hi Wedgewood. I noted that you said your symptoms come back soon after injections. I was diagnosed b12 deficient about five years ago and symptoms tended to return six to eight weeks after my injection but in the last year they’ve started returning within days of the i jection - indeed, at the last u jection the symptoms began several hours after the injection.
I had my most recent injection a week ago and, touch wood, I haven’t had any symptoms yet.
Yes , my symptoms returned quite quickly after the loading doses , and I had to wait 3 months for the next injection which was horrible .
I told my doctor .but she wouldn’t budge . My numb feet were “ideopathic” . Anyhow that’s when I was forced to do self injections , once a week . The numb feet have recovered to a certain extent— they just burn now , which means I can drive.
I cannot understand why the NHS doesn’t do research on this . They could save themselves BILLIONS by not having to treat patients who get irreversible conditions as a result of no or under - treatment . They could let patients self- inject subcutaneously , like they let thyroid patients . Goodness knows how long it will take for them to see the light on this .Martyn Hooper is doing so much , but he does tell us that it’s an uphill job , to put it mildly .
Thank you for your response. My recurring symptoms differ from nearly everyone’s on this site. I had lots of symptoms before treatment but after treatment my recurring symptom was a sudden semiconsciousness during which tinnitus occurred - like the noise from a bad radio signal- then a sense of euphoria during which a dream like sequence occurred with auditory hallucinations. The episodes lasted about 10 seconds and occurred over a five/six day period diminishing over the days - 5/7 episodes the first day down to 1 on the last.
The tinnitus stopped completely after about two years and the auditory hallucinations are rare now. I just get the beginning of the sequence - a sudden semi consciousness and then back to normal but with temporary light confusion and slight memory loss.
I think I am getting better but I’m on my own my doctor and nurses are deaf to anything I say so I stop saying it.
The major problem, I think, is that they immediately assume PA when b12 deficiency is discovered and exclude all other possibilities. They apply the injection routine that they are told is 12 weeks and that’s that - job done!
There are a myriad of symptoms for B12 deficiency , because it can affect anywhere in the body that has nerves .B12 is needed in the formation of the myelin sheath that covers the nerves . If that is compromised , the trouble starts . And it affects different nerves in different people —- hence the many symptoms . Glad that you are able to help yourself. It’s great that it’s so cheap to treat oneself I buy in bulk — 100 of all I need at once . I reckon it costs me just over £1.00 for an injection , now I know the cheapest source . And the ampoules have a long use-by date of about 2 1/2 years . We think nothing of buying a cup of coffe / tea for £2.00 do we ? The injections are a bargain at double the price ! 💉or ☕️? No contest !
Hi Wedgewood. I haven’t tried self injection (yet) I am a vegetarian and I think my deficiency was caused by my doctor prescribing me omaprezole on six monthly repeat prescriptions which I had, on and, off for over 10 years. He never asked about my diet and I never knew it was a problem.
Now I eat food high in b12 like emmental cheese - every ounce provides 30% of ones daily needs apparently and soya milk and yoghurt - 15 % per 100 ml as well as taking a multivitamin and b12 tablets.
Right , I see . Yes, Omeprazole neutralises stomach acid which is required for the absorbtion of B12 . I know someone who had high doses of it for 12 years , Result in her was totally numb feet and legs Upshot of that - many falls because of that numbness . Lack of stomach acid also impaired absorbtion of other vitamins and minerals and she suffered many serious limb breakages . She had 2 complicated spinal ops because it was thought her leg and feet numbness came from spine problems , when it was severe B12 deficiency . End result — now confined to wheel chair. Irreversable damage done . Have you been able to give up Omeprazole?
I stopped taking omaprezole a year or so before my symptoms started. I live comfortably without it - I just note the triggers for creating acid and either avoid or cut down in them. PPI are medicines easy fix for something which requires a little more thought.
If you have PA you will never get better! It is a life long condition and if your B12 levels aren’t kept in control you will suffer from various symptoms associated with the lack of it
Yes, I hope that the damage done by the deficiency can be cured. Many of the symptoms have ceased altogether as I described previously. I think this until after 6/8 weeks the symptoms start again albeit in a reduced form. This cycle, so far, the symptoms have not reoccurred after the latest injection which I received on the 5th October. I live in hope that I will have no symptoms between injections but that hasn’t happened yet.
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