Still cannot get injections reinstated - Pernicious Anaemi...

Pernicious Anaemia Society
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Still cannot get injections reinstated

Hello,

Me again, sorry for all posts, following a letter to my practice manager, i had a 1/2 hour appointment with a nurse practitioner this evening, she wont allow my injections because my b12 is still within range at 217!

Spoke alot but she didnt seem to agree with alot of evidence i produced, like my mean cell Haemoglobin was quite high last year, and i did mention that large blood cells is to do with b12, she said that she wouldn’t give injections but could see levels dropping, and so said she will re test them in December, shes testing me for h pylori because of stomach issues but wont test instric factor!

So not much else i can do, i mentioned that i have neuro symptoms and because i have headaches she started testing for god knows what and had me walking in straight lines, standing still with my eyes closed and squeezing her hands. Shes also testing for fsh and vit d levels, i have vit d deficiency already. So whats next for me? I really don’t know, all i know is i have to feel like this at least until December and if levels of b12 are not below 120 then nothing will happen.

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She also said that if my levels drop they will give me the injections, but these will only be given until they do another blood test, and when my levels are higher they will stop the injections again, its just going to be a big circle.

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Thankyou, athough i cant seem to click on the link above.

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Vitamin B12 and Folate Deficiency - Hull and East Yorkshire Hospital

- this is where fbirder's link goes to. So if you put this in you should get there.

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I wonder why the hell a nurse practitioner is making decisions like this. Is this usual.

She sounds ignorant of NHS guidelines for treatment of B12 deficiency. Don't you hate it when they shout their mouths off about the nothing they know.

Have you tried getting the PAS to help.

Otherwise self injecting as so many here do.

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I am going to try and get PAS to help, i felt like I definitely knew more than she did, and she didnt like it one bit! Im seriously considering si

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Good luck, I hope it works out for you.

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Thankyou

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Tell them if they don't help you'll inject yourself. Inject yourself anyway. It's easy. I started with subcutaneous injections. Now I do my own IM injections. Feel well , feels good to be in control of my own health and not suffering for the sake of begging the NHS for a vitamin to save my life. Horrible b...tards the lot of them.

Stop suffering. Nhs will not make you well, just give you a slow death. With a pathetic 3 monthly vitamin.

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Sorry you've also been through it but well said!

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Im going to look and learn today and si, i really cant carry on like this anymore, its so u fair and also u fair on my family as they are worrying about me because im really not myself.

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Can you get in to see s GP?

I’ve got an appointment later after repeat bloods. Was told with B12 of 210 (200-) no treatment required and were unable to offer anything, hands were tied! I can’t believe so many people with symptoms, PDFs completed, low or below range results are getting ignored by GPs.

Mine did agree to ask haematologist regarding by results, but as I had got private testing wanted more NHS bloods. Closing comment was I would have had injections if still 133 as when last seen (which I did argue I needed at the time but was fobbed off) , but as it’s gone up (in the last 2 years) so I must be absorbing it.

Since NHS bloods done, a couple of weeks ago, I’ve been taking sublingual B12, folate tablets & sublingual vit D. No difference in symptoms yet.

Fill out the PDF from the B12 website, print off info from links on guidelines for treatment and write to GP explaining what’s going on from your point of view & concerns you have. Ask for the info to be attached to your medical notes (it should be anyway I think), you might be surprised & they may all of a sudden want to review your case.

Good luck

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I havent seen a Gp only a nurse, i spoke with Gp on phone for him to say, No Gp will authorise my injections even tho my levels have drop considerably :( think its time to change Gp.

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SI seems the best option - you can get your whole life back as much as possible to suit yourself then. It's only the thought of it that's difficult.

If you still want to pursue the NHS route you could just stand your ground and just quietly and firmly just keep repeating versions of "why not give me the jabs?", "what harm do you think it will do?", "what evidence do you have for this idea?", "why do you think something else will be better?", "can you prove that something else will provide a better outcome and have less negative effects?".

You can stick these simple questions on a card and take it in with you and sit tight, just repeating them without emotion like a robot until you get clear and accurate answers or your jabs at the intervals you need them. As they won't be able to come up with any evidence that the jabs are bad for you - and you can take evidence with you to show that they are completely safe - their only alternative would be to give you your jabs when you need them (and not just 3 monthly).

The above is perfectly possible but it's a lot easier and less unpleasant to just SI!

Good luck with it!

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I do feel like carrying on until i win of you like, but i dont see that i will ever win with the gp or the nurse, tell them u have evidence off the internet and they laugh and say u should google anything, told them what i had come from nice and bsh guidlines and they still wont listen.

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Padeficiant. This is just utter nonsense. Your GP and nurse clearly have no idea about how to treat B12 deficiency, particularly where neurological symptoms are concerned!

Just wondering if you actually submitted the BSCH guidelines and other supporting evidence when you submitted your letter?

If not, let me know and I'll pop back later today and leave you links to evidence that you can print out, higlight the relevant seactions, and then re-submit to your GP, nurse, and practice manager.

Withdrawing injections when you have neurogical symptoms is just wrong - bordering on negligent (irrespective of whatever your B12 levels happen to be following treatment with injections - and incidentally, I see from one of your previous posts that yours are very very low (350)following your last injection, indicating you need more B12, not less. Following treatment with injections, it's usual to see levels that are very high - sometimes way over the top of the reference range (mine are always over 2000 and we've seen them here as high as 5999).

All the guidelines state that measuring serum B12 levels is not required following injections, unless looking for low levels, in which case more frequent injections are required (that applies to you): serum B12 levels cannot be used to manage ongoing treatment following injections.

👍

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I did include some evidence in my letter, should i have printed out evidence rather than writing it? Ive told them about nero symptoms, and instead of taking them in to account she started researching headache! I do feel like re submitting more evidence, also i have gastric problems, and i linked them to my b12 deficiency, but she separated them and said they are not connected, she prescribed Lansoprazole, i wont be taking them because i think i have low acid in my stomach rather than high!

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Yes, it would have been better to include use the actual documents...then they have to read them all, and it’s impossible to ignore what you're saying when the have the original source.

Have to pop out now so will return and leave evidence later today 😉

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Thankyou

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Hi Padeficiant. So...about the letter to your doctor...as per above, including actual copies of the guidelines and relevant research will force them to actually read them. All of them. And will stop the insulting suggestions that of you should stop reading nonsense on the internet (some do, but difficult to see how that applies when you've quoted appropriate sources - BCSH, NICE etc).

Suggest you print out the information in the attached links, higlight what's relevant to your case and then incldue everything along with a new letter. Suggest three copies (doctor, nurse and practice manager): as addressees, they will all have to read your letter and the information attached - will prevent the 'chinese' whisper effect and leave no 'wriggle' room for some to not read.

Going to suggest things that you may (or may not 😉) like to include in your letter (depends on how you want to frame it) and then insert some links to supporting evidence and information, that you can attach to your letter. Here goes with the points (in brief 😉):

>concerned that witholding injections until serum B12 is below the reference range will have a long-term detrimental impact on your neurolgical health

>outline the neurogical symptoms you have and fact that symptoms always return before your next injection is due - an indicator that more intensive treatment is required

>serum B12 level of (300 and something, can't quite remember) immediately following a B12 injection is very low - again, an indicator that you need more frequent injections - not a withdrawal of treatment

>All guidelines (BCSH, BMJ, NICE, etc.) state they serum B12 testing is not required following commencement of B12 injections (unless checking for low levels, in which case more frequent injections are needed - this is you).

>serum B12 testing following injections simply measures how quickly your body metabolises and excretes B12. So no relationship between B12 levels and efficacy of treatment

>following B12 injections it is usual to see levels that are extremely high - because injected with high dose. Usual to see levels that are often over the top of the reference range. Result of injections and no reason to stop injections.

>so serum B12 levels cannot be used to manage treatment following injections

>Treatment should be based on symptoms, not serum B12 levels

>under-treatment of B12 deficiency can result in potential irreversible neurolgical damage (subacute degeneration of the spinal cord - a recognised neurolgical condition caused wholly by untreated or undertreated B12 deficiency (not suggesting you have this but many doctors and nurses are not aware of the neurological havoc that untreated or under-treated B12 deficiency can have on the body - might sharpen their thinking a little

Focus on the fact that they are not following guidelines and are potentially putting you at harm...especially in view of your ongoing neurological symptoms.

Ask them to...

>re-commence your treatment with B12 injection immediately - to,

prevent the recognised potential for long term neurological damage

>because of your neurolgical symptoms, treat you with the intensive regime of treatment (as per the BNF - link below) that is, six loading doses and the injections every other day until no further improvement (this is the treatment regime they you should originally have been on. NOTE (in case they protest) - the BNF refers to the treatment of PA with neurological symptoms. Numpty doc and silly nurse may say ah ha...but you don't have PA. Doesn’t matter - the treatment for PA is treatment for the B12 deficiency it causes...so the treatment for B12 deficiency is the same (whatever the cause). Further note - details of the intensive treatment regime (BNF) are about the third paragraph down. May have to point it out because not many medics or nurses read their far down!

>if they are unable to re-instate your injections, ask them to put that decision in writing and provide evidence from the guidelines or research, to support that decision (they won't be able to - there isn’t any). Just to give you confidence, worth noting that all medical professional are supposed to engage in evidence based practice, so asking for this is not an unreasonable request 😉. And they still won't find any evidence

>if they are are willing to grant your treatment request, ask for an immediate and urgent referral to a neurologist (because of your ongoing neuro symptoms - over 80 causes of neurological symptoms and if they are assuming that this is not due to B12 deficiency (nonsense, but thet's what they may say), then this should be investigate to determine the cause

>Also as them to provide written assurance that, in view of your ongoing neurogical symptoms, withdrawal of B12 injections will not leave you exposed to developing subacute degeneration of the spinal cord (the fact that they are accountable should not be lost on them - especially if they read your evidence 🙄).

>finish your letter by saying that you have an appointment with Dr **** on ****** and would appreciate if he/she could read the attached information before this appointment, so that you can make best use of the time , on the day (make sure that you leave at least five working days between hand-delivery of your letters and you appointment date, so they have time to do the reading).

No idea how you want to approach this but another option is to also say that if they feel unable to offer you treatment based on the recognised guidelines, then you will have no option but to take this further (request to CCG, NHS England)...or even report them to the General Medical Council and General Nursing Council, respectively. Think I'd save this in case they refuse again - they really won't like it and might have an impact on ongoing relationships.

Good idea if you can take along a friend or relative to go in with you. Sadly, doctors are more attentive if there is a witness in the room. If that person could read your letter, guidelines, evidence etc. and be prepared to step-in to support you, if necessary - even better.

So...here come the links...as said above, print and read all the documents and highlight anything relevant to your situation, so they can't miss it. Most documents are only one page...BSCH is longer but has useful summaries through-out (but details about not treating are within the main document...

Guidelines your GP should be following:

onlinelibrary.wiley.com/doi... (BritishStandards in Haematology (BCSH) Guidelines for the Diagnosis and Treatment of Cobalamin and and Folate Disorders). Including B12 Deficiency / PA Diagnostic Flowchart.

BMJ B12 treatment review - summary only (rest hidden behind a paywall but your GP will be able to access it). Good because it specifically states the importance of treating B12 deficiency immediately if neurogical symptoms are present - even if serum B12 levels are normal (in the summary on first page):

bmj.com/content/349/bmj.g5226

This one highlights the importance of treating immediately with B12 injections - even if B12 levels are normal - to prevent subacute degeneration of the spinal cord. Also proves that it exists:

archive.is/hbPHE (UKNEQAS B12 Treatment Alert, Neurological Symptoms and Risk of Subacute Combined Degeneration of the Spinal Cord – Immediate Treatment with B12 Injections)

Next two are about problems with B12 testing and problems with testing after treatment with injections:

stichtingb12tekort.nl/weten... (Problems with Serum B12 Test)

stichtingb12tekort.nl/weten... (Testing B12 During Treatment)

About B12 safety (some mistakenly /nonsensically think it's toxic, dangerous, or addictive) and the importance of getting adequate / intensive treatment when neurolgical symptoms are present:

stichtingb12tekort.nl/weten... (B12 Treatment Safety / Long Term Treatment for neurological symptoms)

And just in case they insist that you don't need injections because you don't have PA:

stichtingb12tekort.nl/weten... (B12 Deficiency and Intrinsic Factor – Can Be Negative and Still Have PA)

Not sure if you'll need these but included so that you can have a peek and see...

stichtingb12tekort.nl/weten... (Misconceptions About B12 Deficiency – Good to Know Before Seeing GP)

stichtingb12tekort.nl/weten... (B12 Deficiency: Neurological Symptoms Can Present Even When B12 is ‘In-Range’ and Without Macrocytosis (large red blood cells) or confirmed PA Diagnosis)

If this doesn't work this time there are a couple of other options:

>ask the chair of the PAS (Martyn Hooper) to intervene and advocate with your GP, on your behalf. Had success doing this before but you do have to be a member of the PAS

>change surgeries and get a new GP - though sadly, no guarantees that a new one would be any better

>consider self-injection - many here do this as a last resort but we do not recommend this unless there are no other options (because it is then difficult to get treatment for often related conditions because doctor would not then accept that B12 deficiency exists).

Finally...so sorry that this is happening to you. All here know how difficult it is to challenge doctors and nurses, especially when they really don't want to listen. Be strong...you know that you're right about this , so be determined and don't give up.

Very best of luck. Let us all know how you get on.

👍

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Wow, thankyou so much for taking the time to send me all this great information, i really do appreciate all your help, i will most certainly let you know how i get on.

Many thanks again xx

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No problem Padeficient12. I was once in your position so I know exactly how you feel. And it makes me very angry 🤬🤬.

Very best of luck x

P.s. sorry it was a bit later than originally planned 😳.

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Thankyou 😘

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