self injecting and gp's: if so many of... - Pernicious Anaemi...

Pernicious Anaemia Society
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self injecting and gp's

jillc39
jillc39

if so many of us self inject does this give a false reading to gp's who think we are all managing on what they give us? I would love to know your thoughts.

34 Replies
oldestnewest

Exactly! But what choice do we have.

I have recently seen my GP twice regarding ongoing symptoms and have been referred to a haematologist who has put me on weekly injections for 10 weeks to see if my symptoms are improved. But he is very negative and says he doubts if this will make any difference to me "medically" whatever that means. He also suggests I should try breathing into a paper bag because hyperventilation is the main cause of B12 symptoms.

I am only going through all this in the hope of raising a bit of awareness but I know that at the end of the ten weeks I will be back to self injecting.

It isn t right that we should be by passing our GPS in this way but the whole business is demoralising and I hate it. Sad isn t it?

jillc39
jillc39
in reply to pugdogs10

yes, very sad and not right!!! but what can we do - it makes me furious that we are taking the burden out of necessity and the gp thinks we are okay.

Foggyme
FoggymeAdministrator
in reply to pugdogs10

Oh pugdogs10. Not that old bag on the head chestnut, AGAIN!

B12 symptoms due to hyperventilation? How marvellous if that was the case! We could all stock up on paper bags and have an immediate return to normal vital life! No visits to the surgery! Now there's a thought to make me smile.

Demoralising, hateful, sad - couldn't agree more.

Hi,

I wonder if Martyn Hooper would be interetsed in hearing about the "paper bag treatment" and also about a haemotologist who says hyperventilation is the main cause of B12 symptoms.

pernicious-anaemia-society.... 01656 769 717

martynhooper.com/

I told my GP that I self - inject to keep the symptoms at bay. Then she said that I was the only patient in the practice that did this . I get extra B12 injections for 2 other patients there, but of course they don't tell the doctor for fear of annoying her! It maddens me! I did put it to her that patients might self- inject but she wouldn't have it. The. Doctors should be told- I mean it's not against the law. What they do, denying people who need an injection more than once every three months , should be against the law. SO TELL UOUR DOCTOR IF YOU SELF-INJECT PLEASE.

I told my doc that I inject once per week. He's not madly keen, but he knows there's no way I'll change.

scorpiojo
scorpiojo
in reply to fbirder

Rebel 😊

Helsinki96
Helsinki96
in reply to fbirder

Hi fbirder,

Sleepybunny mentions a B12 summary, I presume, you’ve written that can be drawn to uninformed GP’s/healthcare professionals attention . Do you have a link?

Can you offer any other advice enabling my voice to be heard, because all I’m getting at the moment is “....NICE guidelines....”

TIA

Desperate B12 deficient sufferer. (& I do mean sufferer.)

Hi Helsinki96,

Think you'll find a summary of B12 documents in fifth pinned post on this forum. Think it's the last link in the fifth post. I think this summary is for people's interest rather than to be handed on to GPs but check with the forum admins.

If you want to draw things to your GPs attention, might be worth looking at the following links and put relevant extracts from them into a letter to GP.

UK B12 documents

BSH Cobalamin and Folate Guidelines

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

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

Flowchart outlines process for diagnosing PA and Antibody Negative PA in UK

BMJ B12 article

bmj.com/content/349/bmj.g5226

Emphasises need to treat patients who are symptomatic even if their B12 level is within range.

BNF

bnf.nice.org.uk/drug/hydrox...

BNF guidance on treating b12 deficiency changed recently.

pernicious-anaemia-society....

BNF Children

bnfc.nice.org.uk/drug/hydro...

NICE CKS

cks.nice.org.uk/anaemia-b12...

Local Guidelines in UK

Some parts of UK are using guidelines on treatment and diagnosis of b12 deficiency that are years out of date. I suggest you track down local guidelines for your area and compare them with national guidelines/articles eg BSH, BNF, NICE CKS.

If you join PAS (Pernicious Anaemia Society) you would have access to their library section which has lots of useful leaflets/articles eg

" An Update for Medical Professionals: Diagnosis and Treatment "

pernicious-anaemia-society....

Although the website deals mainly with PA, some of the info is applicable to people with other causes of B12 deficiency.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no 01656 769717 answerphone

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

CAB NHS Complaints

citizensadvice.org.uk/healt...

Other B12 websites

B12 Deficiency Info website

b12deficiency.info/

B12 Awareness (US website)

b12awareness.org/

B12d.org holds support meetings near Durham, UK

b12d.org/event

Stichting B12 Tekort (Dutch website with English articles)

stichtingb12tekort.nl/weten...

I have written some very detailed replies on other forum threads recently with links to B12 books, B12 websites, UK B12 documents/articles and other B12 info.

I suggest you have a look at them when you have time.

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

You may find it helpful to start your own post with your story as you'll get more replies that way . People often miss new posts on older threads.

If you want to start your own thread, click on the blue box with a pencil icon (at top right of screen if using a desktop computer, not sure where if using a phone).

I am not medically trained.

Thanks so much for your detailed information. I will study and tackle my GP once again

Seven years I have been struggling to be heard, but reading posts, it is not extraordinary that patients comments are not acknowledged.

Why does there seem to be a medical block concerning this issue? I don’t understand.

Thanks again

"Seven years I have been struggling to be heard"

Sadly that is not unusual...I struggled to be heard for over 15 years and in the end had to resort to self treatment when I realised I was headed for dementia and spinal damage.

Had some bad experiences with doctors which have left mental scars as well.

Good luck and please think about starting your own thread when you have time.

Some of my detailed replies discuss ways to cope with unhelpful GPs.

Foggyme
FoggymeAdministrator

I agree with all that has been said. It would be much better if we could tell our GP's that we self inject.

But...my GP's have flatly refused to give anything more than 12 weekly, even with neuro symptoms. They know nothing at all about B12 deficiency, do not want to learn and, I suspect, might very well strike me from their list if I were to admit to self injecting.

I'm still trying to get them to read guidelines etc. and push for the right treatment (at least) but I suspect that ultimately, I will have to 'go it alone' and just use them for whatever tests I can squeeze out of them, together with the occasional antibiotic, when needed.

Sad, bad and ugly!

Chocolate41
Chocolate41
in reply to Foggyme

I have just started self injecting because my GP says I can only have 12wkly.

To be quite honest I darent tell him I do.I know he will say have a blood test and if it is high he will stop them altogether!

What do you do!

I agree with you mine could well strike me off the list.

It's terrible and at times I do feel really down about it.

It's so bad

Foggyme
FoggymeAdministrator
in reply to Chocolate41

Know how you feel about feeling down. It just makes you feel so worthless, useless, uncared for, redundant...and a load of other words that I wouldn't like to print here!

I wonder if GP's ever THINK about how they make patients feel?

I dread going to see the doctor, and hate myself for it (I used to be better than that)!

My revenge (not quite the right word, but I can't think of another) will be to get as well as I can, despite their efforts!

Take care

really sad to read all these replies - I agree with every word. Foggyme could be speaking for me word for word. The gp's are not interested but I don't know why they are so hostile - its as if they think we enjoy the painful injection and all the symptoms we struggle with.

"hyperventilation is the main cause of B12 symptoms." someone is nutty!!!

I am getting none from my GP (in spite of neuro. symptoms) - retest in 6 months. I am having one a week from a private GP but that can't go on forever. My NHS GP knows I but I can't remember if I told him how many I was getting. and my neuro symptoms are improving.

Hi beginner1,

I hope you continue to improve and that you are able to persuade the NHS to give you the treatment you require.

Could your private GP write to the NHS GP and explain that B12 injections are having a positive effect on you?

I could try that but I don't want to get the private one into trouble.

I think the B12 injections were a bit overwhelmed this week. 4 train journeys, a cataract op. and a bad cold but I was glad to see that although some of the improvements were worse they did not disappear.

It's unbelievable, isn't it?

A nurse saw me at my worst - when I couldn't talk or barely walk - and my Dr saw me when I was bad (I avoided him at my worst because I was scared he'd lock me up - I couldn't think at all straight and the anxiety was hideous).

Over the next 4 months of daily jabs they saw me return to work, most of the neurological symptoms abate and lots of cognitive repair happen. I stopped feeling hunted.

Then, despite their neurologist writing to say "no change in treatment", they stopped supplying my jabs overnight without telling me!

The last six months of procuring all my own supplies has seen me mostly take my life back and (with the odd glitch) I continue to improve now I have realised how vital the cofactors, including amino acids from my diet, are too.

I have asked my Dr to record what I take on my notes so that it is known about if I ended up in hospital without warning.

He has agreed to support me in cases of accident or other illness.

I don't self-inject (yet) but I do use high-dose sublinguals and patches to get between eight-weekly injections. My surgery are hell-bent on testing me all the time, despite my continually explaining that they should not being doing so. My serum level is >2000 (top of the lab range) which as far as I am concerned is where it needs to stay. I am really paranoid about it and feel that if I refuse to have any more blood tests they will refuse to give me any more injections. And that they are looking for an excuse to cut me off.

And get this. One of the doctors actually told me that I needed B12 in my serum and was wasting my time taking additional B12 because I would just pee it out. Boy did I get a look when I enquired how the B12 could get into my urine if my kidneys hadn't filtered it out of my blood, and wasn't that what happened to the injected stuff anyway.

Seriously though, I totally understand the 'hunted' feeling. The mental effects of the illness are bad enough on their own without the added pressure of ignorant health care professionals.

Cybrook
Cybrook
in reply to Twench

Hello Twench... Ive just read your mail above... Im a newie..so forgive my silly questions.... Ive had one episode with my GP and realised he is a B12 virgin who likes to come out with statements that patients do not normally question. He's an improviser and has obviously got away with it most times..

... Ive got a pretty good idea he is next going to say same as your GP did..

"You will pee it out away"...i.e. We can only give you so much B12 or you will pee it out any excess.

Always wanting to be prepared...I wonder if you could explain what you meant by...... "One of the doctors actually told me that I needed B12 in my serum and was wasting my time taking additional B12 because I would just pee it out." its the part "needed B12 in my serum" that I dont understand.. I read this as a complete contradiction by the GP (if serum means the substance you are injecting)

Ive re-read the words 3 times and dont understand what the GP was getting at... Perhaps I am really and totally out of B12 as I read... (Ive not started treatment yet...) and my brain is suffering lol..

Twench
Twench
in reply to Cybrook

Welcome Cybrook,

Serum is the clear liquid in which the blood cells and clotting factors are suspended. Basically it is the liquid component of blood and is full of electrolytes such as sodium and potassium, vitamins, minerals and so on. Labs centrifuge the blood before measuring the amount of B12 present.

B12 is transported around the body in the blood stream, in serum, and stored in the liver. Being water soluble any surplus is filtered out by the kidneys and passes into the urine and, well, you know the rest.

Excess B12 in the serum, whether injected or ingested, will pass out of the body in the urine. The point here is that B12 from food or oral supplementation requires intrinsic factor for absorption in a specific part of the gut. So if the conditions are not right (for example lack of intrinsic factor, surgical removal of the ileum) you won't be absorbing it into the blood SO IT WILL PASS OUT OF THE BODY IN FAECES NOT IN URINE. It's possible about one per cent may be passively absorbed but when you are deficient that won't get you very far.

Hence the preference for injections. You will still pee a lot of it out but at least it stands a chance of getting into the blood in the first place.

Hope that's clear-ish!

Cybrook
Cybrook
in reply to Twench

That is really clear Twench... I cannot thank you enough. Best wishes to you.

Sleepybunny
Sleepybunny
in reply to Cybrook

Hi cybrook,

if you want to be prepared for appts with GPs about b12, I'd recommend getting a copy of Fbirder's summary of B12 documents. If you pm him or search for his posts you should find a link to summary.

Cybrook
Cybrook
in reply to Sleepybunny

Hi Sleepybunny... Right.. I will do that... and thanks very much..

Cybrook
Cybrook
in reply to Sleepybunny

Got it and saved it...will be printing it out and it may end up on my GP lap... lol.. Thanks again.

clivealive
clivealiveForum Support

We need to keep taking the fight back to our doctors to get increased frequency for injections according to our needs and symptoms not just accepting "what it says on the tin" and the "one size fits all" fixation doctors have.

If you are a member of the PAS there is a new two page document in the Library section headed

DIAGNOSING AND TREATING

PERNICIOUS ANAEMIA

AN UPDATE FOR PRIMARY HEALTHCARE PROFESSIONALS

The British Committee for Standards in Haematology issued their updated Guidelines for the Diagnosis and

Treatment of Cobalamin and Folate Disorders in June 2014. Key points you need to be aware of are below.

DIAGNOSING COBALAMIN DEFICIENCY:

The Serum B12 Test is not a good indicator of the patient’s B12 status

“The clinical picture is the most important factor in assessing the significance of test results assessing

cobalamin status because there is no ‘gold standard’ test to define deficiency.”

“Definitive cut-off points to define clinical and subclinical deficiency states are not possible, given the

variety of methodologies used and technical issues, and local reference ranges should be established.”

“In the presence of discordance between the test result and strong clinical features of deficiency,

treatment should not be delayed to avoid neurological impairment.”

The document goes a lot further about P.A. diagnosis concluding with

Treatment issues

· 48% of patients considered their treatment to be ‘very poor, poor or inadequate’

It is designed to be handed to the doctor and even gives them the opportunity to

LEARN MORE AND EARN CPD POINTS TOO

Go To The App Store and Download the ECPD App Register and Search for B12.

You’ll earn 1 full unit of CPD on correctly completing the ten questions on the new guidelines.

I wish you all well for the future

If I end up self injecting I shall tell my GP. I'm playing it softly, softly at the moment until I've seen the Endocrinologist in June. If no luck there I will ask to be referred to Haematologist. My neurologist also admitted lack of B12 knowledge but thinks I do not have a neurological illness, to which I agree, at the moment. But he did agree to push the idea of the b12 investigations in his reply to my GPs referral. I will receive a copy of his letter.

Having been twice diagnosed with serious illnessness, at my insistence in the past, I eventually pluck up the courage to tell my GP things that I would have hesitated to when I was less confident in my younger days. However this site is helping me enormously at the moment to plod on.

No GP at my practice has knowledge or special interest in anaemia, they go by serum b12 blood test levels alone.

I've left PAS info etc with them but, I will eventually suggest that Martyn H comes to do a presentation for them. However I can tell they are not ready for that suggestion yet as they are still in denial!! Hope that all made sense as I am shaky and nauseus this morning and probably bit repetitive.

At least the sun is shining.

Hi guys , hope some can give me a bit of advice I have low b 12 and get a injection every 3 months , does any one have any ideas on how or were I can buy be injections from to keep my self topped up, I've talked to my doctor who just didn't want to know, ,any help or ideas would b welcome, I looked in the Internet and it seems like I can only order it from abroad, really hoping I can get it from the uk .

Hydoroxocobalamin, which is what the NHS in UK uses, is only obtainable here on prescription. You can get it without prescription from German Amazon(search for B12 ampullen at Amazon de) It comes in 1 mg ampoules in 2ml saline. Make sure you get Hydroxo and NOT Cyno. You can get Methlycobalamin dried , from Oxford Biosciences (Google them) They do not supply the saline required, but tell you where to get it(Germany ) Some people think that's the Methylcobalamin works better for neuro symptoms

Foggyme
FoggymeAdministrator
in reply to hsather12e4

Hi Hsather. I get my Hydroxocobalamin from care.de (they have English translation pages). You can also get sodium chloride to mix with the dry form of Methylcobalamin sold by Oxford Biosciences. I buy needles, syringes, alcohol wipes and a sharps box from medisave.co.uk or exchange supplies.org.

If you buy B12 from Europe, check the box to make sure that you are not getting Cyancobalamin as this is routinely on sale in Europe.

If you want to purchase sodium chloride for mixing with dry Methylcobalamin, you will need to use one of the free Internet translation services to translate sodium chloride into German (know the term but just can't remember it at the moment) to get the correct search term.

Plenty of people here to help if you choose to go down the self injection route.

Hope this helps. Good luck.

Hidden
Hidden

We all get something out of self injecting/ supplementing. Arguing , presenting evidence to docs for continuation of injections when we know we are ill. Stress, anger, frustration. Easy way out, is self inject or supplement.

Many years ago, their was no means to self inject/ supplement. I did not know or dared too.

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