I just got a message from my GP asking me to stop SI as my serum B12 is over 2000.
I have a face to face meeting with him on Wednesday. He is new to me but I spoke over the phone and he seems like a lovely guy.
Could you all please send me links to studies stating that high circulating B12 levels are proven non toxic. I need him on my side referring me to haematology and whatever department to carry out further investigations as to why I am this way. STILL BEDRIDDEN unable to function extreme fatigue elevated heartbeat breathlessness shallow breathing. Cliche anaemia symptoms but it may be renal etc . Therefore i need him to refer me.
Thank you all.
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Try stichtingb12tekort.nl It’s in Dutch , but scroll down until you reach the English articles .
There are several useful articles on there for you to produce to your doctor .
Also ask him/her to tell you where you can find scientific articles stating that very high readings of B12 are harmful in any way if you are having injections ( We know that high levels of B12 readings can indicate a health problem , but ONLY IF YOU ARE NOT RECEIVING SUPPLEMENTATION . Best of luck 🍀.
I was bedridden initially. Cant see your time frame or back story on your profile.
Once on injections testing shoukd not be done
BSH guidelines I believe
Another paper shows how high b12 levels on injections not dangerous. Has been on previous threads.
If your relationship okay so far with your Gp at your consult go through what's being eliminated . What investigations pending.
They have very little knowledge on b12.
They truly believe once levels back up you are sorted.
My Gp admitted this. Said once she like a challenge.
So try and be open . I said I dont want all these I jections but b12 is the only thing that's helped.
I tried tablets on gps request to have fewer injections. It's now on my notes tried but not effective. (I had already infact tried all sorts. )
Also state how you csn see b12 making improvements.
Have you b12 on prescription too?
By phoning you he/she is at least on your case.
It was a neurologist in the end that stated to keep uo b12 levels and to carry on with every other day at the start but the Gp put me back on every other day and left it to me. When o got to two weekly she would not go back to a higher frequency but has keo me on that.
In other words
'play the game ' as you probably know more about b12 at present.
Get your referrals. Follow through with what he /she is trying to work out how to help you.
It's an awful ordeal I find.
Often being prescribed antidepressants and other drugs.
If anxiety is mentioned say you understood it was one of the symptoms. I didnt know at the time and through frustration was trying g to keeo a lid on tesrs or anger. Not a good impression to give.
Try and get a double appointment.
Something I was told to do. Gp never hurried me like some in the practice even when a receptionist rang in the consult to ask what the problem was as sg
He was behind time!!!
Keep hold of what you need ,referrals ect and the best way to achieve it.
Thank you. My readings were over 2000 and not diagnosed with PA. There is more going on here with me and I am now going to see a haematologist. I will tell him all so we can find out what type of anaemia it is be it auto immune etc. If it was simply b12 deficiency and or PA my SI would have seen to that by now. So I will keep you all posted as to the out come.
your doc may be thinking that some people do react to injected b12 with elevated heart rate - so a trial to reduce the injections and see what happens to heart rate may be what he's after.. .
The opposite happens. As I make more blood my bpm reduces. This much I know as I feel it for sure. There's more oxygen circulating but this isn't just a B12 thing there's more going on an hopefully will be investigated properly for the various types of anaemia like auto immune renal etc.
thats good evidence - but elevated heart rate crosses quite a few medical disciplines e.g. hydration status - if blood volume increases then heart rate can decrease - but see how you get on with haematology.....
Dorset ... well same CCG for both of us do all that has been advised try to get haematologist appointment at Poole hospital you can insist on this it is out of our area we in west Dorset but still insisted and eventually got them Dorset CCG is not prioritising PA or B12 deficiency and is offering tablets and not injections at GP level and that statement from Is is another story in itself and not needed to be discussed now ... haematologist will advise GP to override but not in west Dorset I’m sure you get the gist from the above good luck and like all of us that have had to face an enormous ‘battle’ to eventually get the correct treatment keep on with it steady and sure you will get there and I hope you feel better soon take care
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Update of visit to the GP
Gp agreed to levo dose increase -and talked about B12 injections!
Need Help For My GP…
