Pernicious Anaemia Society

How long does it usually take for neurologists to write to gp's after consultation to commence treatment?

Hi guys, so I had my neurologist appointment last Thursday and he came to the conclusion that I should be receiving treatment, I know a week isn't that long but my GPs not had my blood results which were taken on same day or a letter from neurologist. I had to wait 9 months for my neurology appointment, for my peripheral neuropathy and probably am getting a little impatient. The worst part of the neuropathy is sleep. It keeps me from sleeping and I wake up what feels like 30 times a night with either really bad pins and needles, or that my hands, arms and feet are completely dead I can't move them. Its really frustrating me that Iv waited 9 months to be told that my B12 result of 156 is low enough to be causing me symptoms of neuropathy, just one of the many symptoms of B12 deficiency I am experiencing. Am I being impatient?

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I imagine being winter and the flu bug causing problems everything will be delayed. Try not to fret, and hurray, you are going to get treated.

I still think your GP is an idiot, our county has the range 180 - 1000 - so why won't he treat 156. As someone else said "Where do they get these GP's from."

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Make an appointment with your GP ASAP. If you can't get to see your GP then see whoever is available.

Tell them what your neurologist said and that you are in desperate need of something to help with the neuropathic pain. Ask to be put on gabapentin straight away.

Gabapentin should take the edge off the pain enoug to make it possible to sleep most nights. On those nights where it is really bad then try taking a cocodamol, but don't use it on more than three successive nights.

Once you've got the symptoms quelled then you can concentrate on getting treatment for the cause. Make sure you get the treatment in the BNF for people with neurological involvement - injections three times a week until no further improvement in symptoms (with a review after three weeks) then one injection every 8 weeks.

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Hi fbirder

Id rather treat the cause then take extra tablets for the symptoms. I know they could possibly help me but I find most medication comes with its own side effects and problems so trying to get the treatment and be on medication as last resort. Thanks for the info, I may have to go down this route if I don't get anywhere with injections.

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If your Peripheral Neuropathy is caused by B12 then you could be looking at a long series of injections before the symptoms go away. And it's quite possible that the damage may be permanent and that the pain will never go away.

If you can put up with not sleeping for another couple of months, or longer, then don't ask for the tablets. I know I'd have driven myself mad if not for my gabapentin.

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I hope its not permanent :'(

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Hi Ic24. I'Ve just had a quick scan through your previous posts and am appalled by the lack of treatment from your GP - though it's something we read of all to often here.

About the letter - speed of delivery depends on how efficient the hospital admin team are - I see several consultants and some letters arrive within 7 days and some take several weeks. So no way on knowing. Incidentally, I always ask that letters sent to the GP are also copied to me so I know a) what the GP has been told and b) that the letters have been sent (and arrived).

Don't have time for a lengthy post so here's a couple of comments that might help you to counter any objections your GP may still have in respect of treatment.

A) 40%-60 of those with PA test negative for IF antibodies. You can test negative and still have PA

B) there are many other causes of B12 deficiency (i.e. IBS, Crohn’s disease, GI surgery, infection with heliobactor pylori, medications that impede the absorption of B12 - to name but a few). Your GP seems oblivious to the fact that other things can cause B12 deficiency.

C) your previous serum B12 test clearly shows that you had B12 deficiency. You also had/have symptoms of deficiency, including neurolgical symtpoms, that should have been treated immediately to avoid potentially irreversible neurological damage (a condition called subacute degeneration of the spinal cord - SADSP) Note: the neurologist obviously found no neurological deficits (on examination, physical signs of neurolgical damage, as opposed to the neurolgical symptoms you are experiencing), so don't worry that you already have this. However, your GP ignored both your symptoms and the serum B12 test which demonstrated B12 deficiency.

D) You now have a neurologists opinion which states that your symptoms are due to B12 deficiency and that you should be treeated for this (with a letter to follow). Some GP's choose not to follow advice given by consultants (goodness only know why). If your GP takes this stance, you may like to point out that you consider this to be negligent and will consider further action if they still refuse to treat you.

E) You could also point out that the long delay in treating you coupled with a further delay in treatment (if they refuse injections) exposes you to potentially developing SADSC - and if this happens, you will hold him responsible - and accountable (remember, you have evidence from the neurologist). But I sincerely hope that you won't be forced to say this.

Here's a document to print and take with you, just to reinforce the point. It's a treatment alert that instructs doctors to treat with B12 injections immediately if neurolgical symptoms are present are present to prevent SADSP (even if B12 is 'normal' - and yours isn't)

onlinelibrary.wiley.com/doi... (UKNEQAS B12 Treatment Alert, Neurological Symptoms and Risk of Subacute Combined Degeneration of the Spinal Cord – Immediate Treatment with B12 Injections

About treatment. Here's a link to the BNF treatment regimes (your GP will have a copy but doesn’t appear to have made much use of it so far). The section you need is about the third or fourth paragraph down - for those with neurolgical symtpoms. Print, highlight the relevant section for neurological treatment, and take that with you too.

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

(BNF B12 Deficiency: Hydroxocobalamin Treatment Regimes)

You should receive 6 x loading doses on alternate days (usually mon, wed and fri) and then injections every other day until no further improvement. For some, this can take many months, especially if the symptoms have been present for some time.

A note on treatment: the BNF refers to this as the treatment for PA. Your GP may still say ah ha, but you don't have PA. This is a moot point. The treatment for PA is treatment for the B12 deficiency it causes. Ergo, the treatment for B12 deficiency is the same, whatever the cause (and there are lots, as above). Including this so you'll be able to respond sensibly if your GP still insists you don't need treatment (or intensive treatment) because you don't have PA.

Another note of caution: serum B12 testing is not required once injections have started (unless checking for low levels). Levels will be high following injections. This is as it should be. Many GP's test following injections and then stop treatment because levels are high. This is wrong. Once treatment has commenced, efficacy of treatment should be assessed via symptoms - and symtpom relief - or not.

For future reference, here's a copy of the BSH Cobalamin and Folate Deficency Treatment Guidelines (shows what your GP should be doing for you):

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

Also - B12 defiency is most often caused by an absorption problem (from various causes) and this can lead to other deficiencies. The most common ones are folate, iron (ferritin is one marker for iron deficiency anaemia but a full,iron panel gives better iron status) and vitamin D (folate is especially important). Ask you GP to test these if he hasn’t already done so. Get copies of blood results (you are legally entitled to these) and post in the forum for help with interpretation (GP's often say results are 'normal' when they're not - hovering at the top or bottom of the 'normal' range can be significant).

And finally, you can either wait for the letter and then see you GP (taking the evidence and arguments above to help support you) or see your GP ASAP, update him on what the neurologist said (and say the letter is on the way) and again use the evidence above to support an immediate treatment request.

In light of the neurologist's assessment and recommendations, your GP would be very unwise to refuse treatment, especially if you make the comments above and present him with the evidence.

Finally, very best of luck, let us know how it goes and post again if you need further help.

And finally finally - your GP is a bit of a numpty... if you have more trouble it might be worth trying to change surgeries- though there are no guarantees that another GP would be any better. Just the hope that it would be so.

One more document - for luck 😉

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

👍

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