Hi my first day here. I was diagnosed with PA approx 10 yrs ago. I had regular injections, monthly then three monthly but they stopped abruptly at age 50. I was told people over 50 do not need injections anymore. No alternative was offered. I have regular blood tests that always come back as normal, but I don’t feel normal! ( I was diagnosed with hypothyroidism at the same time, and still take levothyroxine for this) When I tell my doctors how I feel they say it’s the menopause ( but I’m totally through that without any effects at all, not even a hot flash) They tried to put me on HRT but that was a disaster so I’m off it again now. Why wont my doctor listen to me? Did anyone else have there medicine stopped due to their age?
Alternatively make a list of your symptoms and present this to your doctor and ask him to treat you according to your symptoms and (perhaps) even start you on loading doses "until there is no further improvement" according to the N.I.C.E guidelines below. Click on the link, then on "Scenario: Management" and scroll down to "Treatment for B12 deficiency"
If possible take someone with you who can validate your neurological symptoms as the doctor is less likely to pooh pooh you in front of a witness.
I am not saying that this is an easy thing to do but try to stay calm, write out what you want to say and keep to the script and be confident that you are "in the right" and your facts are correct.
I am not a medically trained person but I've had Pernicious Anaemia (one of many causes of B12 deficiency) for more than 46 years and I'm still "clivealive" at the age of 77.
"diagnosed with PA approx 10 yrs ago. I had regular injections, monthly then three monthly but they stopped abruptly at age 50. I was told people over 50 do not need injections anymore. "
Please think about joining and talking to PAS as soon as possible. PAS can sometimes intervene directly on behalf of PAS members.
May be worth trying to get proof of original PA diagnosis eg copy of blood tests/complete set of medical records, letter from specialist etc.
Some forum members have found original diagnosis of PA was not in their notes when they challenged doctors who wanted to stop injections/change level of treatment.
Unhappy with Treatment (UK info)?
Have you considered writing a letter to GP outlining your concerns? In UK, letters to GP are supposed to be filed with a patient's medical records.
I included symptoms, relevant test results, relevant family history, extracts from UK B12 documents in letters to doctors. I always kept a copy of any letter I wrote in case I needed to refer to it in future.
Making complaints can make a GP practice defensive. It may be better to try to educate them.
HDA patient care trust
UK charity that offers free second opinions on medical diagnoses and medical treatment. They use a network of specialist doctors in UK. They are quick to respond to enquiries.
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book is up to date with most UK b12 guidelines, does not mention recent BNF change.
"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper
Has several case studies.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)
Very comprehensive with lots of case studies. There is also a paediatric version of this book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".
More B12 info in pinned posts on forum.
I am not medically trained.
I have written other longer replies on other threads , may be worth searching for them.
clivealive mentions taking someone with you to appointments. I think this is a good idea; it's my impression that doctors are sometimes kinder if a witness is present.
It's also another set of ears...can be hard to concentrate and take everything in when on your own especially if brain is foggy.
Thank you to everyone who has responded. I will make a list and take it with me to my next appointment, which is exactly what I did last time and was told my symptoms were due to the menopause, which I’ve since proved is not true. ( but not without being prescribed medication I did not need which resulted in me having to have an operation under a general anaesthetic) I’m fed up of not being listened to. I’ve been off the injections for 5 years now and I’m scared to find out what permanent damage may have been done. 🙁
I'd suggest talking to PAS before next appointment if possible. I'm sure PAS can suggest info to pass on to GP. They may even be able to talk to your GP .
Might be worth writing a letter to reach GP before appointment as it gives them time to research info and also avoids face to face confrontation. Might also be worth taking a copy of BSH Cobalamin guidelines, BNF info etc with you.
Help for GP
1) PAS website has section for health professionals. They can join PAS for free.
If you still get no joy, which I sincerely hope you do, there is always another option, which is the option I've now taken thanks to all the help of the amazing people on here.
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