I have read many posts on here already and have found out so much useful information. I have had symptoms of PA for around 10 years. The first of which was pain at the slightest touch and chronic fatigue. This was brushed off by the GP as being 'run down' and it would pass.. it never did. I finally got diagnosed last year and put on 3 monthly injections of b-12. I feel that sadly, the neurological symptoms i suffer are now beyond help as it as gone on too long without treatment. I am seeing my GP today to ask if I could have my injections more frequently than 3 months due to on going symptoms, but do not hold out much hope. I am also going to ask about SI. What have people's experiences been like with their GP/Consultant?
Thank you
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Doppydoo
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It's helpful to know which country you are in as patterns of treatment can vary between countries.
I post a lot of info so might be good to read it over a week so it's not so overwhelming.
Some links may have details that could be upsetting.
With neuro symptoms present, I would expect you to be on the treatment pattern "For people with neurological impairment" outlined in link below if you're in UK.
Point 1 in above link is about being under treated for B12 deficiency with neuro symptoms present.
It's vital to get adequate treatment. Is your GP aware that delayed or inadequate treatment increases the risk of developing permanent neurological damage. In severe cases, the brain and spinal cord can be affected.
If GP is not aware, then may be worth discussing risks of SACD with them. I'm not medically trained and I'm not saying you have SACD but I am saying that your GP should be aware of the possibility of SACD in patients with b12 deficiency.
PAS article about SACD, sub acute combined degeneration of the spinal cord
I urge UK forum members to track down the local b12 deficiency guidelines used by their ICB (Integrated Care Board) in England or Health Board in Wales/Scotland.
If you can't find local B12 deficiency guidelines online or by searching forum posts here then best bet is to submit a FOI (Freedom of Information) request to ICB/health Board asking which B12 deficiency guidelines they are using and ask for a link to or copy of them.
May also be worth looking at anaemia guidelines used by your ICB or Health Board.
Some of the local B12 deficiency guidelines are not helpful so I think it's wise to know what you're up against. See blog post below.
Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.
"I feel that sadly, the neurological symptoms i suffer are now beyond help as it as gone on too long without treatment. "
Don't give up hope of improvement.
I was ill for nearly 20 years before I got treatment. I had many neuro symptoms including dementia type symptoms and spinal symptoms. Virtually all my symptoms have improved or disappeared. I saw improvement for 8 years running from when treatment started.
I need far more B12 than NHS allows. My symptoms start to return very soon after an injection.
Many UK forum members turn to treating themselves if NHS treatment is not enough. Some get extra B12 injections from private GPs or beauty salons, some try high dose oral B12 ( 1000mcg or higher) but this doesn't work for everyone and some as a last resort turn to self injection (SI). There is a pinned post about SI.
I'm not medically trained just someone who suffered for years from unrecognised and untreated B12 deficiency.
Very slim chances of more injections. Most GP's are very ignorant about PA/B12 and it is a constant struggle for most forum members to bring them up to speed. It doesn't help that they seem to have an innate dislike of patients suggesting treatment based on what they have read on the 'net. Even though we get the information from reputable scientific sites.
Thank you. I have found this out today with my GP. I explained all of my symptoms and how often they occur. I was told i do not not have PA, even though i was diagnosed last year. He said I looked fit and well and then proceeded to tell me to drink plenty of fluids and take regular exercise to reduce the fatigue as it is also a 'mental' thing.. Needless to say, very unhelpful and did not feel listened to at all. I asked if i could SI myself, he said no, as too much b-12 can be very harmful?? Left the appointment feeling very deflated and that I had wasted their time.
That too much B12 supplementation is harmful is total rubbish . Just for fun ask your GP to give you a reference to any scientific article that mentions this —there is none . It’s the one vitamin that cannot be overdosed !
You now have some ammunition to use provided by our knowledgeable SleepyBunny !
After 2 visits to A&E due to the GP sending me because of my symptoms. I did see a neurologist as first they thought I could have had a stroke and then they leaned more to MS. After my eventual diagnosis of PA, I was then discharged from Neurologist.
I was told it was migraines too and told take Amitriptyline. Like you, they were not helpful for me. And no one has mentioned about seeing a Neurologist??
I suggest putting concerns about diagnosis/treatment into a brief letter. Less likely to be ignored in my opinion. Letters to GPs are supposed to be filed with medical notes in UK. See letter writing link in one of my other replies.
Thanks again. I am a member of the PAS, which I have also found very helpful. I have read through the information you listed and am currently waiting for my local ICB to get back to me.
Maybe your gp could tell you what PA looks like, seeing as he thinks you look fit and well. I am constantly surprised at how well people can look when in fact they are seriously ill. What an over confident idiotic reply. Just brush the patients aside with platitudes and hope that many will just give up trying to get treatment, until for some it is just too late. No wonder gps are tired. In their shoes I wouldn’t sleep at night.
Totally agree with this! The comment about getting more exercise was laughable. If i could exercise then i would. Trying to explain the days where the chronic fatigue takes hold to then be told you look fit and well was very deflating.
I bet your GP is one of the ignorant ones. Maybe it would be worth passing the articles I posted about wrong ideas about B12 deficiency to him and give him the Mayo Clinic article.
Also this one...
"Treatment with high dose vitamin B12 been shown to be safe for more than 50 years"
You could also point out to them that hydroxocobalamin is used to treat cyanide poisoning in doses thousands of times higher than that found in a 1mg B12 ampoule. See section on Indications and Doses in next link.
"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper
Martyn Hooper is the former chair of PAS (Pernicious Anaemia Society). Published a few years ago.
Two other books I think are worth reading.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US
authors)
Very comprehensive with lots of case studies. There is also a paediatric version of this book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".
"Vitamin B12 deficiency in Clinical Practice" (subtitle "Doctor, you gave me my life back!" by Dr Joseph Alexander "Chandy" Kayyalackakom and Hugo Minney PhD
If you join PAS, you could print out leaflets you think GP would find helpful. Some leaflets can be accessed by non-members.
Some GPs have this idea that lots of B12 can be toxic because there are research articles showing that high levels of B12 have been found in some cancer patients. Some GPs might interpret this as high B12 levels cause cancer without considering that the opposite could be true ......that the cancer might be causing the high B12 levels....
If you have time, ask GP why they think high B12 levels are harmful.
Many of us here have B12 levels well above normal range and need this to function adequately.
"he said no, as too much b-12 can be very harmful?? Left the appointment feeling very deflated and that I had wasted their time. "
You're not wasting their time. He is wasting yours by spouting nonsense. There is no B12 dosage which is proven to cause harm, this is why no tolerable upper limit has been set. Ask him if he knows what a tolerable upper limit is in relation to nutrition and B12 🤣. You can't look at someone and see the frayed myelin under their skin that no longer sufficiently protects their nerves when severely B12 deficient. Just another idiot GP who cannot use his brain - seems to be a common problem.
With neurological symptoms, once every3 months is really insufficient. You should do once-a-week for a few weeks/till your symptoms go away and do at least once-a-month after that. I do believe that you will do much better on better treatment. If GP won't give, do self-injections.
If you cannot do it, take orals 1000-2000mcg/day apart from your 3-monthly shots. It doesn't work perfectly for everyone, but will be better than the current treatment you are having.
Thank you. I am looking into SI and take the oral spray daily. I have learnt so much in a short space of time form the information given on here. I have an injection at my surgery next week and after this time i will pursue SI. It would be interesting to know how people manged to work? I have a full time job but have had a lot of time off due to on going symptoms.
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