Hi - I’m new to this, but will try to write my query.
Got diagnosed with PA by a gastroenterologist about 6 years ago ( I don’t have the intrinsic factor) B12 injections every 3 months until about 3 years ago, then down to every 2 months. But at 6 weeks, I go downhill fast. This past year, it’s been getting worse & it now affects my driving senses as well as myself/life/work, so have asked GP to go down to 6 weeks (3 or 4 days after having it - back to normal) Had BT but came back as 2000, so have said I don’t need to reduce time between injections. I’ve pushed the point as I, like so many other people, still have symptoms (which GP’s don’t understand), so have been advised I’d need to see a haematologist.
So, I’m doing what research I can to arm myself with evidence to present to GP.
Questions -
1) has anyone been in a similar situation & if you can share- what was your outcome?
2) if I’ve already been told I don’t have the intrinsic factor - what would a haematologist be looking for ?
3) has anyone been taken off B12 injections as their levels are too high?
Many thanks in advance
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Space69
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the IFAB test is insensitive and gives false negatives 40-60% of time so a negative result doesn't rule out PA - the BCSH guidelines refer to IFAB negative PA as a resultonlinelibrary.wiley.com/doi...
unfortunately serum B12 is nigh on impossible to interpret post loading injections. The early studies on retention of B12 showed huge variation in retention with some people having very high levels of B12 over a year later. Unfortunately the studies don't record how people felt during that time - just serum B12 levels.
You could try pointing your GP at the area of the PAS website particularly aimed at helping medical professionals improve the diagnosis and treatment of PA and B12 absorption problems
Many thanks for your reply. Will look into your suggestions. Have requested a copy of blood test report, so I can see all the information, not just what they are telling me.
Each CCG/Health Board in UK will have its own local guidelines on treatment/diagnosis of B12 deficiency. Worth getting hold of local guidelines for your CCG/Health Board and comparing them with BSH, BNF and NICE CKS links.
Two useful B12 books
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).
BNF treatment info in book is out of date. See BNF hydroxycobalamin link in this reply for up to date info.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)
Some UK forum members find NHS treatment is not enough and resort to treating themselves.
Links below are to forum threads where I left some more detailed replies with lots of B12 info which you may find useful eg B12 deficiency symptoms lists, UK B12 documents, causes of b12 deficiency, B12 books, B12 websites, B12 articles and a few hints on dealing with unhelpful GPs.
There may be some details in the links that could be upsetting.
Yes I’ve had similar but fortunately my GP allowed me to have monthly injections (instead of the two monthly I was receiving) for a ‘trial period’. Luckily the monthly frequency went onto my repeat prescription list so I’ve kept at that frequency for a few years now.
I did find after a while monthly wasn’t enough and I started si weekly and ultimately settled on twice weekly. This allows me to live a full active and sporty life with no peaks and troughs.
I don’t have the confidence to ask my GP for more frequent injections as the one who allowed it has since retired and I’m worried about losing the monthly prescription.
Hi - many thanks for replying. Likewise with GP - first one retired. As the surgery is a teaching one, doctors are changing - so depends on their knowledge. However, it did work in my favour years ago, as it took me two years to be diagnosed with under active thyroid. It was only because of a newly qualified doctor, wanting to put her new knowledge to use, finally diagnosed me. I suppose I could hope for the same.....😊
I was diagnosed years ago and handle my Pernicious Anemia myself. My doctor only prescribes syringes for me. I order my b-12 from Canada (cyancobalamine). Every time my doctor orders a b-12 level for me, I refuse it. Have no idea what my b-12 level is and I don’t really care what is. I go by my symptoms. Injections twice a week but occasionally I need a “boost “ and do an additional injection.
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IF high values
B12 injections been stopped
Oral b12 or injections
High levels of b12!!!
