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Pernicious Anaemia Society
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Thank you for help with appeal letter for B12

Hi Everyone,

I hope you are all good this morning. I would like to thank Foggyme Sleepybunny Gambit62 and everyone else for helping me to write my letter to the GP practice about my diagnosis of Pernicious Anaemia. The GP has agreed to start me on B12 injections again now with neurological involvement. She has started me on alternate day injections for the next few weeks. She said I should just come back with my symptom list then and she will hopefully continue the treatment. She did agree I had clinical improvement before. I then just asked can this be a diagnosis on my medical notes now and she said she wasn't sure about that part.

So I am really happy and grateful for all the help and support you have given me to write the letter. But I am also a bit anxious that the GP might decide to end my treatment again. I'm just wondering is there anyway to get the diagnosis in writing or should I just leave that part now. Any advice about that would be appreciated.

Thank you all so much.

16 Replies
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Hi carmel13n It's good to read of your progress. Well done for persevering.

I seem to remember that you said you had low a Folate level a month or so ago. Have you had it checked more recently?

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Hi clivealive ,

Thank you for replying. Yes it's good they have agreed to the B12 treatment now again. My folate levels are still low aswell. I had a test in October. This is the result below

Serum Folate

Folic Acid Assay 7.6 ug/L 3.1 - 20.5

That result does look pretty low. I'm not sure if I should start taking supplements for that now. Your advice would be appreciated. Thank you.

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As I'm not a medically trained person I suggest you either speak to your doctor or pharmacist about supplementing.

Personally I have taken 1 400mcg folic acid tablet every day for more years than I can remember but the I get B12 injections of cyanocobamalin every three weeks for P.A. which I've had for 46 years.

Folic acid can be bought cheaply over the counter at your local chemist or supermarket.

I wish you well

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Thank you clivealive .

I think that result does look quite low so I will start supplementing that too now. Hopefully it will make me feel even better.

I'm still just wondering how I can get my diagnosis written down by the GP so they don't stop my treatment again.

Do you know if I am allowed to say no if they ask to check my B12 levels again as I think that is what they did the last time and then they just stopped my treatment. It would just be good to have the diagnosis written down to save me from all this worrying about it.

I will start the folic acid soon now thank you for that advice.

Wishing you well too.

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That you have been diagnosed with Hashimoto's I would have thought your doctor should know that that may put you at risk of developing a Vitamin B12 deficiency.

I have no idea how authoritative this website is but it is only one of many which reference a link between the two.

google.co.uk/url?sa=t&rct=j...

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Hi Carmel13n. It's really good to hear that your GP has finally agreed to treat you. Well done for persevering but grief, what a fight you've had.

About placing a diagnosis of B12 deficiency on your medical records - this will perhaps be something your GP will agree to once you can demonstrate a positive result to the theraputic trial (since treatment should continue and thus represent a recognition that B12 'fixes' you, ergo B12 deficiency is the underlying problem.

So happy on your behalf...hope you start to,pick-up very soon πŸ˜€πŸ˜€

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agree with Foggyme

cross the bridge of the GP changing their mind if and when it actually happens - though it can be quite difficult to park things.

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Hi Everyone,

Thank you for all your advice. Thank you clivealive I will read the article you posted but no the GP practice I'm with are not that good really it took them months to even start me on Thyroid treatment. The GP I saw last week agreed with me that the therapeutic trial was successful so hopefully when I go back in a few weeks she will agree to continue the treatment. Your right Gambit62 I will try to stop worrying that they might stop it again.

Hopefully Foggyme they will agree to put PA on my records when I do a symptom list. Should I say no if they ask to check my B12 levels again?

Thank you all so much for helping me but it has caused me so much stress really. I'm sure I will feel better soon. The GP has put me on the loading injections again for the next 3 weeks. I just want to be prepared for the next appointment so it doesn't all get stopped again. Hopefully it will all go like you said above Foggyme and they will continue my treatment.

Thank you all for helping me get this far.

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Hi Carmel13n.

About a PA diagnosis - few doctors will diagnose PA if the IF antibody test is negative (as was your case, if I recall correctly). Most have not heard of anti-body negative PA, a potential diagnosis when all other causes of B12 deficiency have been ruled out. The diagnostic flowchart giving guidelines on how to diagnose antibody negative PA is contained in the BSH Cobalamin and Folate treatment guidelines:

onlinelibrary.wiley.com/doi... in Haematology (BSH) Guidelines: Treatment of B12 Deficiency and Folate Disorders)

You could perhaps discuss this with your GP when the time comes.

However, many people who have PA struggle to get a diagnosis (because of the unreliable IF test) so this is probably not something you should worry about. Getting continued treatment for B12 deficiency is what matters.

The main thing is that if you have a successful theraputic trial and your GP continue to treat you for B12 deficiency, the B12 deficiency should be recorded on your medical records.

B12deficency is a diagnosis in its own right (since there are many causes of B12 deficiency, not just PA), so having this as a recorded diagnosis should ensure that your treatment continues.

It’s also worth noting that the treatment for B12 deficiency is the same as the treatment for PA.

Should you refuse to have B12 levels checked again? If your GP wants to do this, think a better approach would be to have a conversation about the misconception that serum B12 levels can be used to monitor the effectiveness of treatment:

Serum B12 levels meaningless following injections - since they should always be high

High levels do not indicate efficacy of treatment - just a reflection of injections having taken place

Efficacy of treatment assessed via evaluation of symptoms.

Not all symptoms resolve immediately. Some take longer - especially neurological symptoms

Serum B12 testing following injections should be to check for low B12 levels (unfortunately the guidelines are not always clear on this and are contradictory, in places).

Here's information about serum B12 testing, in case you need it:

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

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

stichtingb12tekort.nl/weten...

The good thing here is that your GP has taken notice of the letter you wrote and has obviously read the information and evidence you included: she's moving from ill-informed to getting informed. And if she missundertstands the value (or inappropriateness) of testing serum B12, well, this is something that can be dealt with at a later date, if necessary.

I'm only saying all this now because it sounds as if you're worried about...and not saying it won't make the worry go away.

Having said all that...think for now you should try not to worry and forget 'what's next', for now....just remember, there are folks here to help with the next stage, if this becomes necessary. And it might not be πŸ˜‰πŸ˜€.

πŸ‘

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Hi Foggyme ,

Thank you so much for that lovely reply. I know I'm worrying far too much about what might happen or go wrong but hopefully it won't this time. The GP seemed quite happy at the appointment and she said she had read a lot of the information that you helped me to provide and I did mention about the Antibody Negative PA that everyone told me to put in the letter. She did already agree too that my therapeutic trial was successful before so hopefully she will just put my diagnosis down when I go back.

Thank you for all the links about the serum B12 testing when having treatment. I'll do as you suggest and just talk to the GP if she asks about testing the levels again.

I'm feeling better about it all now. Thank you so much for all the help and support. Yes I do have quite a lot of neurological symptoms. Hopefully they will start to improve soon.

I think she is also just putting me on the loading injections for 3 weeks.

I'm really glad I got this far and I'm very grateful for all your help. xx

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Everybody here will know all about 'the worry' 'cause many have been through what you're going through...me included. So don't beat yourself up with the worry stick πŸ˜‰.

About the symptom list you're taking with you to your next appointment - all symptoms lists are a little different: some more comprehensive than others. Try this one (symptom list is at the bottom of the page):

b12deficiency.info/signs-an...

It’s more extensive than some: there may be symptoms there that surprise your GP (and maybe you too πŸ˜‰).

And don't worry if your neurological symptoms don't improve within three weeks. Neurological repair takes longer than other forms of repair - for some, many months, with improvements being experienced for a couple of years plus - it also depends on how long you've had symptoms and how quickly treatment was started.

The important thing is that if you still have neuro symptoms, the injections should continue every other day. The BSH says check after three weeks of intensive treatment - but that doesn't mean stop treatment. If your GP wants to reduce the frequency but you are still having symptoms, point her to the BNF, which clearly states every other day injections 'until no further improvement'.

Note: the BNF describes the neurological regime as being for the treatment of PA and some GP's have been known to say ah ha, but you don't have PA. Well, that's nonsense. The treatment for PA is treatment for the B12 it causes - so the treatment for B12 deficiency is the same (whatever the cause, PA or otherwise).

Just so you can go prepared (helps with the worry factor πŸ˜‰) here's a link to the BNF guidelines:

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

(BNF B12 Deficiency: Hydroxocobalamin Treatment Regimes)

And in case your GP has concerns about long-term intensive treatment with B12 injections, here's a link to information about B12 safety and the importance of continuing with long-term treatment for those with neuro symtpoms:

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

Really pleased to hear that you're beginning to feel a bit better about it now. B12 deficiency can cause anxiety, so perhaps the B12 is helping with a symptom you might not have known was a symptom πŸ˜€.

Keep posting and remember, no worrying...plenty of folks here to continue giving support and help, if needed.

And if your GP fails to prescribe B12 injections frequently enough to get and keep you well, then there's always the option of self-injection between surgery jabs. Not nearly as scary as it sounds and advice here about appropriate places to buy Hydroxocobalamin and syringes etc.

Here's an uplifting post from someone who's recently gone down that route:

healthunlocked.com/pasoc/po...

(Only saying this so you don't have to worry about treatment being reduced too soon πŸ˜³πŸ˜€).

You take care now πŸ‘

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Thank you so much Foggyme for your great reply. I'll try not to be too hard on myself about the worrying. I have been wondering what symptom list to bring with me to the next appointment so I'll take that one. She also told me to grade the symptoms every day. I was thinking I should stick to the worst neurological ones like my tingling feet and balance and grade those ones. I think I've had symptoms a long time but I had been ignoring them. Hopefully some of them will start to improve now.

I think self injecting might be a very good idea for me now. It will save me having to rely on the doctors too much. I will have a read of the link you posted with the uplifting story. Would it be ok to inject every day if I decided to do that or do most people do alternate days.

The GP had already said she read the BNF and the NICE guidelines about the treatment regime but I can't remember what she said she was going to do after the 3 weeks now. I think I was in shock she had agreed to put me back on treatment really. I've started the folic acid today aswell so that should be good.

Hope you are having a great day and thank you so much for all your support. x

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Hi Carmel13n. Apologies, but have to be quick so...

Monitoring symptoms:

Best to monitor all symptoms (especially while on theraputic trial).

Neurolgical ones slower to resolve than others.

Be good to show improvements to other symptoms too - GP will be more inclined to continue treatment if you can show improvements (and neuro ones might not show improvement in three weeks).

Improvement to non-neuro symptoms is evidence of successful theraputic trial...and evidence that B12 deficiency is probably cause of all your symptoms πŸ˜‰.

On this basis, GP should know that if you still have neuro symptoms, injections should continue every other day (because the successful trial has evidenced presence of B12 deficiency (irrespective of whether you have PA, or not).

Self-injection: best to think about this after GP has re-assessed...if successful theraputic trial, but you still have neuro symptoms, she should continue injections. You could ask to be shown how to SI to save on surgery time and resources - and they would provide the B12, other supplies, and support to do this πŸ˜‰.

Regime for SI (with neuro symptoms) is same as GP has you on now - every other day until no further improvement. But you can ask questions about this if the need arises.

After the every other day, when neuro symptoms have resolved or there is no further improvement, GP's usually revert to eight weekly injections. This is not frequent enough for some people so it’s a case of working out a frequency that works to keep symptoms at bay. Can give more advice about this, if the time comes.

Good luck πŸ‘

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Hi Foggyme,

Thank you for your reply. I'll leave the self injecting part for now then and see what happens at the next doctor's appointment. I've actually had a letter this morning from the practice and they are adding my diagnosis to my medical records. Thank you so much for helping me to write the letter that worked to put me back on treatment and eventually get the diagnosis recorded.

I think you are right and a B12 deficiency has been the cause of all my symptoms. Hopefully I'll be all prepared for the next GP appointment. Thank you for all your great advice and hope you are having a good day too. x

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Thanks Carmel13n. Really no problem. Can't begin to tell you how good it is when someone gets a good outcome πŸ€—πŸ€—.

Post a new update after the doctor has re-assessed. Keeping everything crossed for you πŸ˜‰πŸ˜„

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Hi Foggyme ,

Yes it was thanks to all the help you gave me with writing that letter. I'm very grateful to you and Sleepybunny and others who gave me the encouragement to keep going with trying to get the treatment and diagnosis.

It's Friday week I'm going for the reassessment and I'm feeling a lot more confident about it all now. I'll do another post about how it all goes.

Hope you are feeling well today too and thank you again. x

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