Hi can anyone recommend a haematologist or neurologist who has a good understanding of pernicious anaemia anywhere in England? (Needs to be NHS as GP said they won't act on any recommendation from a private doctor).
Many of my neurological symptoms, although much improved, never went away completely after I started treatment for PA years ago and last year they started to worsen/come back (neurological, eye problems, insomnia, faitgue, tinnitus). Even though my GP believes they are done to PA as do I, as exactly the same set of symptoms as before. GP won't increase the frequency of my injections as they say they have consulted with both a haematologist and a neurologist and both have said there is no evidence that there is any benefit to increasing the frequency of my injections and nothing further can be done. So I need to find either a NHS haematologist or neurologist who I can ask my GP to refer me to who has a better understanding of PA than they ones at my local hospital/trust (York and Scarborough) whom my GP consulted with. I believe you can be asked to be referred to anyone in the country, doesn't have to be local to you.
A different GP initially said they couldn't increase my dose but they could give me another course of the 2 week loading doses which I had and the symptoms did either dissappear, improve or stop getting worse within a few weeks, so I do believe it is down to PA and needing more B12. Same GP ran some other blood tests at the time and everything was normal (I did get a copy and check the ranges myself). I also saw an optician re eye problems and they ruled out anything else as well and the eye problems have completely gone away since the extra B12 as they did when I first started treatment years ago.
The tinnitus is the most worrying symptom as it's not reversible and really don't want that to get any worse.
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Rett713
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My neurologist said to me that I needed to be seen by a b12 specialist and he would try to find someone to refer me to in the UK, a few months later he admitted in a letter to my g.p that he was unable to find anyone in the NHS who could help. I had to go private and luckily I found a great doctor. You say increased injections helped you so you know the benefits that it gives you in other words if your g.p won't sanction an increase then you may have to take your own health into your own hands and self inject like myself and many others on here or you could just allow your doctors to dictate your health and allow you to deterate. Who suffers if you can't get increased injections at your surgery, not your g.p for sure. Wishing you all the best.
Hi thanks for your reply, I’ve seen two GPs they just say they aren’t specialists and need to follow NICE/BNF or Haematologist. I’ve have self injected in past I’m just not very good at it, not sure if I’m doing it correctly and hurts like hell. Anyway, point is I shouldn’t have too. There may be a time when for whatever reason I’m unable to self injection so I want it on my NHS record, the correct dose/frequency that works for me. Always been on 8 weekly injections because of neurological symptoms.
I’m in Canada, but when I got worse a few years ago I had to be honest with my doctor and say I needed more b12 and I was about ready to drive off a bridge. I felt out of my mind and that’s happened twice in my life and only when my b12 was low. She looked up and saw that I could do more, sent me to Internal Medicine specialist whom agreed it was ok as it was not toxic and said it’s my body and I know best. Fight for yourself. Doctors are scared because they don’t understand it.
Also, out of anyone you wouldn’t think I could self inject IM but I’ve been doing it for a month now. I do half doses twice per day. It took two weeks for me to feel confident and now it’s so easy. I bruise many times and legs are sore but I honestly find it hurts less than someone else doing it.
Yes! And my province is not quite one million for population and there are others like me that have to do frequent. My doctor and pharmacists have told me this.
Those doctors and pharmacists deserve a little thank you card and/or a box of chocolates. You will be amazed how important just that token gesture can be to them. Often they are working so hard that they get forgotten about but they are people too.
Doctors are clueless about B12 deficiency. Obviously, your symptoms are all due to B12 deficiency. One idea is to use a daily tablet along with whatever injections you are getting. Something like 1000mcg oral cyanocobalamin seems to work well and in some studies, better than at least monthly cyanocobalamin or 2-monthly hydroxy. In my experience, it took some time to kick-in but after a while, gave me a strong B12 effect. I may also add that the methyl oral version did not suit me well and I still had symptoms of low B12. There are also studies that show superiority of oral cyano, so I definitely suggest to try the cyano version if you are going the oral way.
You could also search forum posts here and if you still can't find them, submit a FOI (Freedom of Information) request to ICB/Health Board asking which B12 deficiency guidelines they are using and for a link to or copy of them. Put FOI or Freedom of Information in search box on ICB/Health Board website which should take you to a page explaining FOI process.
When you find the ICBs guideline compare it with this UK document "NICE CKS - Anaemia B12 and Folate deficiency.
NICE stands for National Institute of Health and Care Excellence.
NICE are due to publish new B12 deficiency guidelines in March 2024.
Search for "NICE draft B12 deficiency guideline"if you want to see what they are working on.
Also worth looking for ICB/Health Board guidelines on Anaemia or Macrocytic Anaemia.
Macrocytic anaemia is a form of anaemia where red blood cells (RBC) are larger than normal.
Macrocytic anaemia can be associated with B12 deficiency and folate deficiency.
It's also possible to have severe B12 deficiency without macrocytic anaemia being present.
"A different GP initially said they couldn't increase my dose but they could give me another course of the 2 week loading doses"
I think you could argue for restarted loading injections to continue for longer.
I'm assuming when your treatment started years ago, you only had 5 or 6 loading injections and that you only had 5 or 6 loading recently. This is the pattern recommended in BNF (British National Formulary) for those without neuro symptoms.
If this is correct, you could point out to GP ( probably best in a letter) that you have never been given the recommended pattern of B12 loading injections for those WITH neuro symptoms.
You could nudge GP to look in their BNF book Chapter 9 Section 1.2 at treatment for B12 deficiency with neurological involvement.
GP could also look at online BNF entry on hydroxocobalamin Indications and Doses section
The recommended treatment pattern for those with B12 deficiency with neuro symptoms is
a B12 loading injection every other day for as long as symptoms continue to get better then a B12 maintenance injection every two months.
There is no set time limit as to how long the every other day loading injections can continue for. Could be weeks even months of them.
BSH Cobalamin and Folate guideline suggests possibility of review after 3 weeks of every other day loading injections but my understanding is that if symptoms are still improving so should the loading injections .
Can be worth keeping a symptoms diary. Pick up to ten symptoms to track. Score severity every day or every week. Look for results that are increasing or decreasing over time. Can be useful evidence of improvement or deterioration to show GPs/specialists.
If GP is reluctant to consider more loading injections, might be worth discussing the leaflet below with GP. It outlines a severe consequence of delayed or inadequate treatment of B12 deficiency.
PAS article about SACD, sub acute combined degeneration of the spinal cord
Peripheral neuropathy can be associated with B12 deficiency and sometimes with folate deficiency.
GP/patient relationship
Being assertive and challenging the GP can affect GP/patient relationship.
Some forum members resort to treating themselves if NHS treatment is not enough. I battled for years to get treatment, was refused on several occasions and believe I have some permanent damage from delayed treatment. If I had not treated myself I'm convinced I would now be in a care home with dementia, paralysis and incontinence.
Help for GP
Might be worth pointing these out to your GP
1) PAS page for health professionals.
They can join PAS as associate members, no charge.
Please note that it is against HU and this forum's policy to recommend specific medical practitioners. People may contact you via chat to make specific recommendations.
I believe there is a practice around Cambridge where some have found help but I don't have specific details.
Sleepybunny said in her post that there is no limit to the length of time placed on administering every other day (EOD) injections for those with neurological symptoms. She is quite right. How can anyone tell how long repair to nerve damage in an individual will take ?
Perhaps a neurologist would be able to give a rough indication- but how long will it take to get the appointment through, even if you do find a good one ? Meanwhile, you need to be treated with B12 at the correct frequency, as recommended in medical guidelines.
It really does depend primarily on you and your GP. You will need a doctor who has some understanding that the point should be to get you to a stage where no more improvements can be had, before introducing an effective frequency for a maintenance dose. This stage cannot be determined by a doctor's opinion on how long nerve damage takes to heal, or by a nurse's opinion on whether B12 injections at this frequency are harmful (they aren't) - it can ONLY be determined by a discussion between you and your GP about firstly whether you have reached a stage in treatment that you would want to maintain and secondly whether the frequency suggested actually maintains your gains. I'd take someone with you to that appointment !
There may be some trial and error involved, and trust is essential. Your GP should believe your account of how this is going and should be monitoring your ferritin, folate, vitamin D and thyroid - but NOT, once B12 injections have begun, your serum B12 level.. because it will of course be high. Medical guidelines for GPs advise against testing this. It is pointless information.
Not all B12 deficiency symptoms are visible, so worth keeping a daily symptoms diary or chart. That will help you both to see patterns related to injections, the aim being to pre-empt the return of symptoms - not start a cycle of improvement and deterioration.
Nerve damage that is untreated or undertreated can become permanent over time. I think it is a good start that your GP believes PA to be the cause. But it's just a start.
Have a look at the links that Sleepybunny has put in her reply to you. It will help you in putting your case forward. Best of luck.
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Hello from a (UK based) Pernicious Anaemia sufferer...
Has anyone in London had a sympathetic GP or can reccomend a private GP for a proper diagnosis ? ☆♡☆
Who best to see privetly Neurologist or Haematologist?
