I have joined this organisation because my daughter was diagnosed with Pernicious Anemea 11 years ago but her doctor is now refusing to give her injections saying her b12 levels are now normal. When she was diagnosed she was told she would need them for the rest of her life. She's experiencing lots of symptoms and only able to work part time she is so exhausted. She was also diagnosed with CFS about a year before PA and it seems the medics have now decided to throw all her symptoms in the CFS basket and pretend she has recovered from PA.At this stage any suggestions would be extremely well received. It's heart breaking to see her struggle so much when there could be help she is not being given.
Louise
Written by
PartyPoodle
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So pleased to welcome you to our forum . You have done the best thing possible by joining us . What your daughter’s GP has done is outrageous, and demonstrates his/ her huge ignorance and incompetence. We keep hearing of similar cases . In the first instance , get your daughter to write a formal letter of complaint to this GP . about this treatment. You are right that PA patients must have b12 injections FOR LIFE You might have to help with the letter as your daughter is now feeling so unwell due to the lack of B12 injections.
You can speak to someone at the Pernicious anaemia Society in Bridgend in Wales , who will help you to formulate this letter. Phone 01656 817085 Mondayto Friday 8.30–12.30 . Do this today .
Most of us on this forum are obliged to self inject B12 , as for many of us the frequency of injections is insufficient to keep symptoms at bay . I need weekly injections to keep well . We are all different and require different frequencies. We obtain our B12 ampoujes from excellent German online pharmacies ( no prescriptions needed for B12 ampoules in Germany ) We have a a few difficulties lately but have overcome them . Needles, syringes , sharps bins etc are obtainable in U.K. Full instructions are obtainable if you ever need to go down that route .at any time . It’s not too expensive —about £3.00 for all items you need for an injection . Nothing to be afraid of I can assure you ( I’ve been self-injecting for 9 years . I’m 85 )
It is possible to get B12 injections at some beauty parlours or clinics costing £30.00 and upwards .
So do not despair . But I can imagine how dreadful this situation is for you and your daughter . She is so fortunate to have your help . You have right on your side 100% And the whole of this forum Best wishes .
I have several words that I would call this imbecile if he is unaware that people who have P.A. HAVE TO HAVE regular B12 injections.
My mother died due to her GP telling her that she needed no more injections and that decision caused her to developed stomach cancer.
I have my jab monthly instead of evert 3 months and my GP is happy to do so..I hope there is somewhere /someone you could report this doctor's decision.
If you look up "syndrome" in the dictionary, it will say something like "a group of concurrent symptoms of a disease" (Oxford Compact English Dictionary).
So it cannot be a diagnosis. It's a set of symptoms that might indicate a condition. A condition such as Pernicious Anaemia. Which they would have been able to diagnose a year previously had they followed the true definition of the word - and looked for it then.
I really am beginning to hate the word "syndrome" because it is so often used by the medical profession as an excuse to stop trying to find a real solution - and treatment.
Martyn Hooper MBE, founder of the Pernicious Anaemia Society, wrote a book* in which he has detailed the results of a PAS survey of almost 900 people with confirmed PA . Under a heading "Common Misdiagnoses", he revealed that 44% of these respondants had initially been misdiagnosed. The most common misdiagnosis by far being "anxiety and depression" at 16%. The second most common was "CFS/ME" at 5%.
In your daughter's case, the real solution has been found already : Pernicious Anaemia.
Measuring the serum level of an injected vitamin and finding a "normal" level does not mean that your daughter is cured. It is advised in medical guidelines not to measure after B12 injections have been started for this reason. It's pointless. There is no information to be gained.
Pernicious Anaemia is an incurable condition. It is treated by using B12 injections to control the deficiency symptoms. If the injections stop, so does the control of symptoms.
I agree wholeheartedly with wedgewood 's advice.
*Martyn Hooper's book: What You need to Know About Pernicious Anaemia & Vitamin B12 Deficiency. Helpful, informative, honest.
Do you mind me asking which country you and your daughter are in?
The reason I'm asking is that patterns of treatment for PA and B12 deficiency vary between countries and the type of B12 used in treatment can also vary.
Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, UK B12 documents, B12 books, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.
Some links may have details that could be upsetting.
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