I've been nagging my 26 yo daughter to have b12 levels checked as she's showing symptoms, my twins were diagnosed a couple of years ago. Her level is 260 and rather than listen to her concerns around pa running in the family, the Doctor is looking at ME. I remember my Mother telling me the Doctor had told her she had ME years ago and saying "join a support group or get on with your life!" I truly believe she was undiagnosed but died from lung cancer as a smoker quite young. My son is also showing signs. His wife has MS and the symptoms are strikingly similar. He's in the Army and refuses to see a Doctor. What is the point of forcing them to see a Doctor when when of them are so ignorant around the effects of B12 deficiency. Sorry, needed to offload. Having a bad day ☹️
I was diagnosed with ME despite having typical B12 deficiency symptoms including multiple neurological problems. My B12 levels were mostly well within range , between 300 and 500 ng/L. Many UK Gps do not realise it is possible to have severe B12 deficiency with an in range B12 result.
Link about "What to do next" if B12 deficiency suspected
In UK, Intrinsic Factor Antibody test used but IFA test can be unreliable and it is still possible to have PA even if IFA result negative ( Antibody Negative PA).
Other countries sometimes use parietal cell antibody test (PCA) but this is not recommended as a diagnostic test for PA in UK.
See section on what test result means in next two links.
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).
"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".
With PA in family, probably worth your daughter or yourself joining and talking to PAS.
Vital to get adequate treatment if symptomatic even if B12 levels are within range.
Do your family members have neurological symptoms eg tingling, pins and needles, tinnitus, tremors, numbness, memory problems, balance issues, restless legs syndrome, word finding difficulties, brainfog etc ?
UK recommended treatment for B12 deficiency without neuro symptoms is ....
6 B12 loading jabs over 2 weeks followed by a jab every 2 or 3 months
UK recommended treatment for B12 deficiency WITH neuro symptoms is .....
A B12 loading jab every other day for as long as symp[toms continue to get better then a jab every 2 months.
Some UK GPs do not appear to realise that patients who are symptomatic for B12 deficiency with neuro symptoms require a more intensive treatment regime than those without neuro symptoms.
"rather than listen to her concerns around pa running in the family, the Doctor is looking at ME"
1) If GP is unwilling to consider PA then may worth directing them to Section for Health Professionals on PAS website. Health professionals can join PAS for free as associate members.
Point 1 in above link is about under treatment of B12 deficiency with neurological symptoms.
Point 5 is about being symptomatic with an in range B12 result.
Has her GP considered the possibility of Functional B12 Deficiency?
This is where there is plenty of B12 in the blood but it's not getting to where it's needed in the cells. Functional B12 deficiency is mentioned in link above.
If all else fails, some on forum resort to self treatment.
My personal opinion is that this is an absolute last resort.
I had to self treat for a while as was unable to get NHS treatment for many years. I think I was heading for spinal damage and dementia and decided enough was enough.
Best piece of advice I ever got ...
was to always get copies of all blood test results.
I learnt to do this after being told everything was fine and when I got copies everything was not fine. There were sometimes abnormal and borderline results that GP had either not spotted or not commented on.
B12 deficiency is not always as well understood as it could be among doctors so it pays to be well prepared.
Have you tried giving them a copy of Martyn Hooper's book "What You Need to Know About Pernicious Anaemia and B12 Deficiency" ?
Just note that this book does not have updated BNF treatment guidance in it.
I cried when I read his book ""Living with Pernicious Anaemia and Vitamin B12 Deficiency" as I could recognise myself in the case studies. Think case studies include people who were misdiagnosed with ME.
I also used to leave Sally Pacholok's book "Could it Be B12" around my house in the hope that people close to me would pick it up and read it.
There may be copies of these books available from your local library service in UK.
There is a film about Sally Pacholok which might be of interest to your family. It's mentioned in next link.
After getting copies of my results over the last 4 years it has become evident that my B12 has been consistently low. Even below 179 on occasions but never considered for loading doses of B12. My active B12 is below range, after being tested privately at the beginning of May. Sent GP an email and the only response I've had is from the pharmacist to say yes the oral b12 and iron sprays are fine to take. Nothing not a text to book an appointment or anything else in response to my very lengthy email. It seems self treatment is the only way to go as the GP doesn't seem to want to do anything
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Sorry to hear that, it's frustrating how dismissive people are. The nurse who did my bi weekly injections in India and Consultant in Singapore were both very surprised to hear that B12 is injected into the arm here. Both injected into my buttocks and said that not only is injection into the arm painful but it eventually causes atrophy of the muscle so I'm happier injecting myself in the thigh. My levels were 129 when diagnosed and I could barely get out of bed. So you must be really feeling the effects at a level of 179. I hope you find a way of getting the right treatment and support.
It may be more effective to put queries about treatment into a brief, polite letter to GP. Letter could contain list of symptoms, blood test results, relevant personal and family medical history, extracts from UK B12 articles/guidelines etc.
My understanding is that in UK, letters to GP are filed with a patient's medical notes and are therefore harder to ignore than other forms of communication. I'm not sure what happens to e-mails.
I used to include a request in letters to GP to file a copy with my medical notes.
You could also ask to view your medical notes, might need to make a formal written request to practice manager, then you can see if copy of e-mail was filed. You could just ask practice manager if copies of e-mails are filed with medical notes.
Your GP surgery website may have a list of policies you can access.
in UK, some local areas have their own guidelines about how to treat B12 deficiency. Some of these local policies are outdated and do not reflect current national guidelines on treatment of B12 deficiency. You may be able to find local guidelines by an internet search.
"able to access my records ....been selective in what they've sent"
I wonder if they have just printed out the online summary record. In UK, I think most GP surgeries now offer online access to a summary of records/results. Details about online access will be on GP surgery websites .
My understanding is that you can request access to paper files which may well have information that is not in the online summary. This may require a formal written request to practice manager.
I'also wonder if GP surgeries in UK have info in computerised records that is not in the online summary. You should be able to request copies/access to this.
The results are not yet accessible on line. My results/letters came as a paper file. Several are missing and I know they're there as I've been told what they were, when I've asked about them during visits. I know these were abnormal as I was admitted to hospital on 3 separate occasions. I just would of liked them as a comparison. To learn perhaps what may have been evident to warrant admission
If you need info from hospital records , you may need to contact hospital records office at hospital you attended. Getting records from hospitals can be much harder in my opinion than getting records from GPs and can involve form filling etc.
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