GP wants me to stop SI. Help Please.!! - Pernicious Anaemi...

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GP wants me to stop SI. Help Please.!!

WorkingProgress profile image
15 Replies

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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WorkingProgress
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15 Replies
wedgewood profile image
wedgewood

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 🍀.

fbirder profile image
fbirder in reply to wedgewood

Here is the direct link. stichtingb12tekort.nl/engli...

WorkingProgress profile image
WorkingProgress in reply to fbirder

Thank you

WorkingProgress profile image
WorkingProgress in reply to wedgewood

Thank you

Nackapan profile image
Nackapan

Try and work with your Gp.

PAS can help as they have information for medics

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.

Awful it's like this .

Take care.

WorkingProgress profile image
WorkingProgress in reply to Nackapan

Thank you

Sleepybunny profile image
Sleepybunny

Hi,

"message from my GP asking me to stop SI as my serum B12 is over 2000"

Have you asked your GP why your B12 levels were tested?

Here's a few more articles that might be of interest....

Misconceptions about a B12 deficiency (from Dutch b12 website)

stichtingb12tekort.nl/engli...

Testing B12 during Treatment (from Dutch b12 website)

stichtingb12tekort.nl/engli...

Testing B12 during treatment (PAS article)

pernicious-anaemia-society....

B12 article from Mayo Clinic in US

ncbi.nlm.nih.gov/pmc/articl...

Table 1 in above article is about frequent misconceptions about B12 deficiency.

If you read the document below , there should be some useful info in it

BSH Cobalamin and Folate Guidelines (UK document)

b-s-h.org.uk/guidelines/gui...

Worth tracking down the local guidelines on B12 treatment for your area of UK.

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

See Point 7 in above link which discusses what to do if GP says too much b12 is harmful.

Letters avoid face to face confrontation with GP and allow patient time to express their concerns effectively.

Best to keep letters as brief, to the point and polite as possible. It's harder to ignore a letter in my opinion.

High B12 but still have symptoms of B12 deficiency?

Has 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 Point 5 of the letter writing link up page.

Article about B12 deficiency symptoms with high B12 levels

academic.oup.com/qjmed/arti...

WorkingProgress profile image
WorkingProgress in reply to Sleepybunny

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.

fbirder profile image
fbirder

You might like to give this to your doctor. bmj.com/content/369/bmj.m13...

It's a letter in the British Medical Journal from a doctor who cannot survive on the standard treatment and has to inject himself.

jox1 profile image
jox1

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.. .

WorkingProgress profile image
WorkingProgress in reply to jox1

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.

jox1 profile image
jox1 in reply to WorkingProgress

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.....

Lasue profile image
Lasue

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

WorkingProgress profile image
WorkingProgress in reply to Lasue

Thank you. They are on my side and it's just going to take extra work in this pandemic. I will hope fully get there.

Sleepybunny profile image
Sleepybunny in reply to Lasue

Link to local guidelines on management of B12 deficiency in Dorset.

dorsetccg.nhs.uk/Downloads/...

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