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Pernicious Anaemia Society
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Another GP visit...

So I finished my loading doses yesterday. I went to see the doctor today to discuss my treatment as I advised it would now be every three months. I'm suffering from a lot of neurological symptom and I have felt no better after my loading doses.

I know that I should be getting Injections every other day until my symptoms improve however no matter what I said to my doctor (even quoting BNF and NICE guideline) he told me he wanted to do a blood test and see what my levels were at before giving me any more injections. So he did a blood test there and then. Will see what they are Monday.

But now I'm worried they'll show up too high and I won't get the injections I need:( I really couldn't feel worse right now.

He said if it's below 800 he'll treat me at the rate I want. I started at under 50.

Any advice would be greatly appreciated

Nikki

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Nikki,

really sorry that you find yourself caught up in this, but try to remember that there are always options and things to try - the good thing about B12, unlike being diabetic or thyroid, is that you can't overdose on B12 so that makes it a lot easier to take things into your own hands and treat yourself. I continued going backwards for 15 months after I was told I had a B12 deficiency and it was only when I tried talking to my GP and just hit the brick wall of ignorance and faced up to having to treat myself that I actually started to get better ... and for me it was so much more than that - I suffered about 4 decades of depression which is now behind me and I now have a life rather than an existence.

The guidelines actually say every other day until no improvement which is rather different from every day until improvement... not that it really matters what they say if your GP is determined to ignore them.

You also need to bear in mind that there is a huge overlap between the symptoms of B12D and a number of other conditions and one, unfortunately doesn't mean that others aren't at play.

Try to deal with things as they happen - know that is difficult when one of the problems B12D causes is problems with anxiety.

Its likely that your B12 may well be above 800 because of the loading shots - unfortunately the serum B12 test doesn't really tell you very much about what is happening at the cell level so you could be functionally B12 deficient but still have high serum levels, but it's all very early days ... and it can all take time. I don't think I actually noticed any effect from shots until my 3rd maintenance shot - that was 9 months into things for me - though it is also true that I hadn't had any information at all on what B12D was and that was the point at which I started to get an idea, so things may have been going on and I wasn't aware, but people on this forum have described similar situations so it can be the case - healing can take a while and it may be that you are a person that just needs things to go on in the background for a while.

What I remember from the third shot was looking at my watch and realising that it was 4pm and I still had some energy and didn't just want to crawl upstairs to bed.

You may find it worth looking at the following site - has a lot of suggestions for trying to follow up on what is happening.

b12deficiency.info/

another option is to try changing GP - though there is no guarantee that you will get one that knows any more about B12D than your current GP.

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Thanks for the reply Gambit.

Yeah I had a feeling my result will come back as high, hopefully I shall find out today so I can let you all know.

I have spoken with the PAS and have found this very helpful. I have come to the realisation that if this does come back high I might have to look into other options such as self injecting as I can't go on like this.

Another problem will be trying to get the diagnosis of Sub-acute combined degeneration of the spinal cord as everything is pointing to that. I just don't know how I'll manage to get the diagnosis.

Once again though thank you for your advice it is really helpful.

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Oh dear so sorry to hear this as it is likely to be high. 800 was just picked out of the air, was it? How about suggesting to GP that you should come back and keep getting tested until you get a result of 799! Ridiculous. My GP tried to stop my treatment saying he was going to check my level to see if I needed more. I said to him that we both knew it was going to be high as I was on alternate day injections and that all guidelines point towards treatment based on symptoms not results. He did not pursue it and I saw a different gp in the practice. Lets just say we also had a frank discussion and he couldn't come up with another reason fir my symptoms ir their improvement on B12 so I have remained on monthly treatment. Your level was 1/3 of mine. You need to keep at this. I also take 5mg methylcobalamin sublingual per day plus methylfolate and B complex at injection time. I am in the best health i have been in years. Everyone thought i had MS or a stroke a year ago! Go back to your GP with someone.

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Yep, I said to him so what number would you consider not treating me more regularly and he was like well anything 800 or above.

I know it is going to come up as high which is really upsetting as I don't know how long I can tolerate these symptoms.

I'm sorry you also had to go through it, it's horrible to think this happens to so many people.

I plan to keep at it and see where I get with my practice. if not I know I'm going to have to look into other methods.

Thank you very much for your reply secondchance, it's nice to know there's other people out there.

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Good luck! Let us know how you get on.

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I will thank you!

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Hi,

If you haven't already you could ring the PAS. You can leave a message and they will get back to you.

Head office: 01656 769 717

pernicious-anaemia-society....

"even quoting BNF and NICE guidelines"

It seems a shame that your GP won't listen to you. Have you given him a copy of the "BCSH Cobalamin and Folate guidelines with the relevant parts circled especially page 29 which is a diagnosis flowchart.

Is he aware that the emphasis now is on treating symptoms rather than serum levels?

May be he would like a copy of the summary points of a recent BMJ article?

bmj.com/content/349/bmj.g5226

You could contact your local CCG (Clinical Commisioning Group) and ask if your area is following the recommendations of the BCSH Cobalamin and Folate guidelines.

I found it helpful to find out the management guidelines for B12 deficiency for my own area. Go to your area's NHS website and put "B12 deficiency management guidelines " in the search. If you can't find it then you could submit an FOI (Freedom of Information) request on the website. Some areas guidelines do not follow parts of the BNF/NICE/BCSH guidance which may explain why your GP is not doing what you would expect.

It may be helpful to see if your MP is interested in the issue of treatment of PA/B12 deficiency. MPs can be useful in getting responses out of high level officials.

Be warned that making a fuss can sometimes get you blacklisted though.

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Just tried the health board web site, and >>

cwmtafuhb.wales.nhs.uk/sear...*865&requiredfields=DC%252Elanguage%3Aeng&orgid=865

No result..

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Also tried >

cwmtafuhb.wales.nhs.uk/sear...*865&requiredfields=DC%252Elanguage%3Aeng&orgid=865

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Sorry about that. you could always try an FOI request.

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I have rang the PAS and found it very helpful, they did advise it does sound like sub acute combined degeneration of the spinal cord secondary to pernicious anaemia. So I know how important it is I get someone to pay attention.

I did advise him that my symptoms are meant to be what is guiding his treatment and expressed how annoyed I was no one had really asked about them. he advised that 'it takes time for it to work'. I understand this but I also know that my neurological symptoms aren't just going to disappear.

I've applied for an FOI as it wasn't on my areas NHS. So hopefully that can shed some light on their guidelines.

I just hope they start listening!

Thank you so much for your reply sleepybunny.

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I'm so sorry that you are having to fight for treatment, given how low your levels were!

As you probably already know Nikki, if you have already been diagnosed with PA, treatment with regular injections are for life and the BNF also advises that patients presenting with neurological symptoms should receive 1000 ug i.m. on alternate days until there is no further improvement. it is appalling that your GP is ignoring expert advice. Have you tried writing to the surgery or asking for another GP at the same surgery? This site has information and advice on writing with useful templates:

b12deficiency.info/b12-writ...

(In case you haven't seen it, the excellent film on this site explains why it is essential to treat quickly and adequately as there is a short window of opportunity before neurological symptoms become irreversible.

My sister tried three different doctors at the same surgery before an Indian doctor there agreed to do monthly injections. This latest BMJ research document also gives up to date guidance on treatment *** It might be worth enclosing summary with the letter (in case GP will not read the complete document) to underline the seriousness of delaying treatment. I sometimes think if they see things set out in writing, they are less likely to ignore it (they are also afraid of being sued I'm told).

cmim.org/pdf2014/funcion.ph...

Cmim/BMJ document. " Summary:

* Vitamin B12 deficiency is a common but serious condition

* Clinical presentation may not be obvious thus leading to complex issues around diagnosis and treatment.

* There is no ideal test to define deficiency and therefore the clinical condition of the patient is of utmost importance."

* There is evidence that new techniques, such as measurement of holotranscobalamin and methylmalonic acid levels seem useful in more accurately defining deficiency.

* If clinical features suggest deficiency, then it is important to treat patients to avoid neurological impairment even if there may be discordance between test results and clinical features.

Severe deficiency shows evidence of bone marrow suppression, clear evidence of neurological features and risk of cardiomyopathy.

It is important to recognise that clinical features of deficiency can manifest without anaemia and also without low serum vitamin B12 levels. In these cases, treatment should still be given."

***"If there are neurological disturbances, then treatment should be expedited and started without delay - 1,000 u.g. i.m. on alternate days. This should be continued for up to three weeks or until there are no further improvements.

***In irreversible cases, e.g. P.A., the treatment should be continued for life. "

I hope all goes well for you and, as others have said, there are always other options.

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It is really disappointing given how low my levels have been.

I've actually seen most of the GPs in my practice who all seem to have the same attitude. I should be getting my results back today or Monday so as soon as I know the situation I shall either try writing or try seeing my GP again. It's so sad how much people have to fight for treatment.

Thank you for the links I shall be having a look through these tonight.

It is very worrying how many of the nuero symptoms I have been suffering with and it's scary that no one seems to be taking what I'm saying seriously.

Really appreciate the advice, thank you for replying Polaris.

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Hi,

Good luck with everything Nikkimae.

A couple of extra thoughts. Perhaps you could give the GP a copy of Martyn Hooper's two books. A third book should be published later this year.

1)Pernicious Anaemia; The Forgotten disease

2)Living with Pernicious Anaemia

I wondered if the Patients Association could help you.

Helpline: 0845 608 4455

Helpline email: helpline@patients-association.com

patients-association.org.uk

I have heard mixed reports about how helpful they can be.

If you need to complain then these links might be useful but in my opinion complaining brings a risk of being labelled as a difficult patient.

england.nhs.uk/contact-us/c...

healthwatch.co.uk/complaint...

Are you able to take someone with you? Someone supportive who understands what is wrong with you and will speak up on your behalf.

Medics are sometimes a lot nicer in the way they speak to patients when there is a witness.

nhs.uk/conditions/social-ca...

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If you discuss sub acute combined degeneration of the spinal cord this might be helpful.

pernicious-anaemia-society....

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