Hi, I am 26 years old and have been suffering from pernicious anaemia since the age of 18. I grew up in Scotland but moved to Sweden at the age of 16 after feeling very unwell for a matter of years it was found that I suffered from very low levels of B12. I received injections of B12 every week for the first month and then an injection once a month until finally injections were given every other month. As I was such a young age and ate foods high in B12 my Dr in Sweden was concerned as to why I would have a deficiency and was unable to absorb B12 tablets, a gastric biopsy was taken and no issues were found my stomach lining was not ulcerated.
At 23 years old I move back to Scotland, I have received one B12 injection in the last three years upon taking blood tests I was told by my doctor that my levels were at the lower end of normal fine yet I feel awful. The old feelings are just as strong as they have been when I first showed symptoms.
In the last three months I have seen the doctor over 7 times at first I was told the dizziness, nausea, heart palpitations, tightness of my chest, numbing and tingling in hands and feet were all signs of anxiety. This last month and a half I have had chronic headaches and what feels like blocked ears my first three visits to the doctors I was told it was a virus I have no been told by another doctor that it is allergies but no one has checked my bloods again and when they did check my bloods for B12 before I was never told the results just that I was fine.
I am unable to keep up with my university work and have been put on academic probation from being off so much and when i do attend i feel foggy, unfocused, confused, slow, faint and nauseous. I have fainted twice that I know of but feeling faint and nauseous every day. I have fallen over many times my balance isn't that what used to be. My quality of life is very very poor.
My questions are many but how do I get help when all I get is excuses. I can't understand how i can suddenly be cured of a deficiency which the cause couldn't be diagnosed in Sweden but was believed to simply be my bodies inability to absorb the vitamin.
How can I find help when the doctors don't listen?
How can I prove I have B12 deficiency when blood work is hard to come by and doesn't always prove that I have the deficiency?
I feel like my mind is deteriorating at an alarming rate that no one listens.
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Hazybabe24
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I am sorry to hear you are having difficulty getting listened to by your doctors. I had very similar experiences when in my twenties and it has impact on your life for sure. I was left undiagnosed and untreated for ten years or more. Recently, I have learnt so much, about pernicious anaemia on line through the forums, by joining the pernicious anaemia society and reading Martyn's Hooper's books on p.a. Also Sally Pacholok's book 'Could It Be B12' has been extremely informative. The Axis Shield laboratory website (located in Dundee Scotland) is very useful. They advise on the Active B12 test. I live on the other side of the world but my advice is be persistent, get a Doctor to listen to you, inform yourself as much as possible so you are armed with information to state your case to ignorant doctors. If necessary get another Doctor or find one who has an interest in B12 problems. Do as much research as possible. Use this forum as much as possible. Don't know if any of that helps but if I could have given myself this advice when I was in my twenties it might have help. Don't give up. Best of luck.
From what I have read there can be genetic reasons why a person finds it difficult to absorb or utilise B12.
Have a good look round this site, there is a lot of experience, and there are links to information. There is a book called 'Could It Be B12?' you can buy online which is informative too. You can ask for a copy of your blood test results from your doctor. If your previous deficiency is documented in your medical records it seems strange your current GP is not taking this seriously.
The usual blood test for B12 has been found to not give a very accurate reading and there is a new test for Active B12 available at St Thomas's Hospital in London and also from some online sites (you have to pay). There are other tests to help confirm as well. There are new guidelines for doctors from NICE which state that patients should now be treated on the basis of symptoms especially if their test results are at the low end of 'normal'.
If you cannot get injections from your doctor you can buy lozenges which you suck and absorb the B12 before it reaches your stomach, or you can get a patch, or a spray. You also have to be aware of the other B vitamins in order to stay in balance.
Hopefully some of the more experienced people here can help you further.
Hi Hazybabe,
Firstly welcome here. B12 treatment once started should not be stopped, unless the def was diet related.
In your case I would insist on a referral to a haematologist, and perhaps read and print copy for GP:
Make sure you are taken seriously at your surgery, walk out the door mat and stand your ground, there is no known harm of to much B12, so much known harm of to little B12!
If I hadn't left Scotland and treated myself I would have died. That is a fact considering the level I had fallen to and the treatment they prescribed (1 x 50 mcg daily) Their treatment regime is abhorrent. The Scottish medical system is nothing less than retarded and their level of protectivism is borderline corrupt.
I can give you an example of this: I contacted a racism centre saying I knew of someone Scottish who had a good treatment regimen which I had been denied, and could they assist in getting my oversight looked into. This was a 'charity.'
The Goverment responded. Why on earth would a charity in Scotland, only knowing my name, even consider not responding but sending my email straight to the Scottish Government? That's how insular and covert Scotland is.
If you have been diagnosed with a B12 deficiency when you were young then you obviously have problems. Scotland will lie (the SPSO actually put a summary of my complaint up on their website - it indicated to readers I'd had a test overlooked for 6 weeks - it was a year. They wouldn't take it down or amend it and threatened to take me to court if I said anything about it) rather than give you the correct treatment.
I'm hoping you are only in Scotland for the duration of your education.
Depending on how long ago it was, get in touch with the doctors in Sweden. Ask their advice. And get yourself out of Scotland ASAP. All they will be putting on your notes is that you have some kind of emotional disturbance. They will keep doing the same tests over and over. Even if they decide you are B12 deficient their treatment is ridiculous.
Germany is good - if you have any relations in that neck of the woods.
I am so sorry Hazeybabe24 that you are having problems getting the right treatment. When you were diagnosed with PA, you should have been monitored and treated with B12 injections for life. GPs are generally not up to date with the latest research guidelines on diagnosis and treatment and you are one of the high risk categories. It is already having catastrophic effects on your life and you have to be prepared to research and fight your corner or supplement and self treat as, you probably already know, your neurological symptoms can become irreversible if not treated adequately and urgently.
BCSH, UKNEQAS and NICE guidelines, all recommend treating symptoms regardless of tests and many GPs are ignoring them or not aware of them!
It might be also worth just pointing out to GP the latest research document Cmim BMJ- A.A. Hunt B12 :
"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. "
It might be also be worth pointing out these summary points of the latest BMJ research document by A.A. Hunt
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 without delay."
It might help to take someone with you to your next appointment to reinforce the fact that you and your family are worried about the serious consequences on the rest of your life of not being treated adequately. Very best wishes.
...and I'll tell you another one about Scotland - if you were thinking it was just me.
A woman had part of her stomach removed but they didn't give her replacement b12 jabs. Without looking it up - I think it was 7 years later, when she was ill, they sent her to see a consultant and he recommended B12. Her GP still didn't give it. Another year later, when the woman is on her knees, they give her B12. Too late. She dropped a couple of days later and goes into a coma.
The husband started complaining because the consultant had said a year earlier she should have had them. But, of course, she should have had them 8 years earlier.
The hospital then accuse the husband of trying to poison the wife. These 'results' they found were never proven or lost or whatever. The police were called though.
The SPSO said that the woman was not suffering injury from B12 deficiency because it had been only delayed for 1 year - and that it needed to be 7 years before she would have run out of her internal store.
You see the husband didn't understand the way they run - he will have put in a complaint that her B12 was delayed for only 1 year - because it was never recommended 8 years previously when it should have been, so they said it couldn't be the problem.
Yet their own expert admitted that after 7 years someone would be in trouble.
Corrupt.
I believe that woman was in hospital for 3 months or more. She'd already had cancer and had half her stomach removed, then had to go through that and then nearly saw her husband arrested for it.
... and not one medical professional in Scotland was in the wrong.
How awful for you. Get a copy of all your old results from Sweden and UK. I was told I was OK but my level was below reference range and required treatment. If I had not got my result and figured this out myself I would be in a right mess by now.
When feeling awful it is hard to be assertive but you need to be. Read up the links above and you will know all you need, then make an appointment with GP accompanied by someone who understands how you feel and will back you up. Bring copies of the guidance etc.
Guidance suggests if you had a clinical response which you seem to have had, then treatment is for life. Only in cases of temporary nutritional deficiency or e.g. treated cause of parasite should B12 be stopped.
Ask why the guidance is not being followed and for an alternative explanation of your symptoms.
PS. You are entitled to know what your B12 test results are and sometimes it is better to ring the receptionist and ask. Even if they won't print them out, they can read them to you over the phone (don't forget to ask for ranges).
This is an extract from the book, "Could it be B12? :
"we believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".
It may be that Sweden uses a different reference range from the UK so you were treated because levels were low but not so low that they would have come back low from a UK lab.
Unless the deficiency is defnitely linked to diet then it is an absorption problem. Possible that whilst you were being treated in Sweden you body built up some reserves (stored in liver and one reason why deficiencies can take decades to develop in some people (including myself I suspect).
Malabsorption can occur for a wide range of reasons including:
- gastric surgery affecting illeum,
- auto-immune responses - although you had a test the one generally used for IFA is known to have a low sensistivity and people can have it done several times until it actually comes back telling them they are positive so it may be that the test you had was inconclusive rather than that you don't have a form of PA
- changes in stomach acid levels (though think that generally goes with getting older ... and is probably the source of the myth that you can't have B12 deficiency unless you are old
- drug interactions, eg some anti-acid, metformin used to treat type 2 diabetes, some painkillers ...
and there are probably others.
As everyone says - you should be treated on basis of symptoms not test results per NICE guidelines.
If you are really struggling to get the treatment you need then you can, as others have suggested, try self medicating - there are no known downsides to having high levels of B12 - good idea to supplement B9 as well (only known downside of high levels is masking anaemic effects of a few conditions - including B12 deficiency) and may be look at B6 - but artificial B6 can cause neurological problems if used in high doses over a long time ... and although the symptoms generally go away sometimes the damage is permanent. I generally use a nasal spray (two actually - one methyl and one hydroxo) which works well with me - for me hydroxo cobalamin works best for the anxiety, depression, being a grumpy sod etc and the methyl means I have a foot at the end of my left leg rather than a painful lump of meat - B12 isn't the most expensive drug in the world - far from it - though I know it can be difficult if you are on a really tight budget. I use a lot and it probably only costs around £1 to £1.50 a day ... and enables me to hold down a job that I was thinking I would have to give up before I started supplementing for myself because the NHS offer of 1 maintenance shot every 2 months just wasn't enough.
Yes, it does get lower as you get older - and I do think that's where the 'myth' comes from. And it is a myth, because back pre 1920 they used to test the stomach acid levels of all then-called PA patients - and they all had low stomach acid. In no way were these people elderly. In fact very few were. The majority were 30s-50s.
And remember that the doctors knew a lot more about the bodily condition then - these people used to die and they used to take them apart: spinal cord segments, nerves, the whole doodah. Not like now - when they do cursory PMs.
Thank you to everyone for your advice. I went to the chemist yesturday and they are going to have to order in a b12 spray so I should hopefully be getting a call from them in the next few days. I called NHS 24 this morning and I am also waiting for a call back from them. I'm about to call my doctors to enquire about what my last b12 results were. I hate feeling so unwell all the time but feel my hands are tied. I am going back to Sweden in June but right now that seems years away. Its going to be a long journey and I don't want to feel this rubbish. I have read others talking about self medicating but I am not really sure where the safe places to purchase from would be?
At the moment if you can get hold of a decent nasal spray it might see you through. I think Polaris uses the nasal spray and can give the best advice on that one.
Glad to see you won't be hanging around in Scotland that long...
Thank you poppet, so am I. Another update, I called my doctors reception and was told they wouldn't tell me what my blood tests said as the doctor had already told me they were satisfactory. The blood test was taken in Oct 2014 and showed my level at 271, also it was a serum test, I found this out after I demanded an appointment to see the doctor, I was told I would have to wait for a telephone appointment on Monday to find out the exact level of the results. The receptionist was being her snooty self so I calmly explained I have been displaying symptoms and will need to speak to a doctor before Monday. I received a call back an hour and a half later from Dr Green (never had a good experience with her what so ever). I gave her all my best arguments I wanted to book an appointment for a nurse to give me injections. I explained that NICE advise direct treatment of those showing neurological treatment. According to her I was wrong, I will only receive treatment as she sees fit after the results of my blood test come back, which might take up to a week. I knew the answer but wanted to make her feel empowered so I asked what the known harmful effects were of giving b12 to patients who have previously been diagnosed with b12 deficiency but show low "normal" levels of b12 in serum blood tests which aren't always an accurate representation of deficiencies of all the elements in questions also considering NICEs recommendations to treat all those showing neurological symptoms or risk damage being permanent. Sadly the response I received some what confirmed my prior suspicions that she did in fact get her medical license out of a Christmas cracker "We do not give extra B12 to anyone unless they can prove they have low levels in their blood". I should point out that while recanting this telephone conversation to a family member I lost what I was talking about twice and lost count of the amount of time I had to reform sentences in my mind because I had forgotten simple words.
Hi Hazybabe, you REALLY need to get a new doctor. Your doctor, and their reception, are offering a very poor standard of care and there is no need to tolerate it. You're entitled, by law, to get a copy of your blood test results. I'm in Scotland (Edinburgh) and even in the worst doctor's surgery I've been to, I've never had problems like yours!
Also, for the record, my serum B12 was 383 (I think!), much higher than yours and well above the NHS 'low enough to need treatment' and I succeeded in getting loading doses then monthly injections, which I'm still getting. I had to fight for them, but I didn't have all the classic symptoms of anaemia that you have and I have never had a diagnosis. My B12 is being used purely to treat a neurological condition. You have a much better case for getting B12 than me, you just need to put it down coherently, to a GOOD doctor.
I'd suggest you write a letter to your doc and leave it with him/her, detailing all your treatment in Sweden and what has since gone wrong for you and what you think is happening. It sounds like you are having too many jumbled visits, while you're not coherent and you don't have enough time to explain everything and the docs aren't taking in what you tell them. That's the beauty of putting it in writing - you get time to get it right and revise it!
Scottish doctors are exactly like all other doctors, harassed, short of time and misdirected by bad NHS guidelines or just arrogant, ignorant and plain stupid, but a good doctor is a good doctor and a bad one is a bad one, no matter where they are. You need to find a good one. I don't know where you are but if you are in Edinburgh or Aberdeen I can recommend a couple of practices, otherwise don't you have any friends you could ask?
Hi there. I am in Aberdeen and trying to get care for my elderly father be beyond 3 monthly shots. Can you recommend a consultant in Aberdeen. He is going for private blood work next week as we are getting nowhere with his gp!
sandramcgregor If you click on Chancery's user name in the post you're replying to you'll see that they've not been on the PAS forum for a year. So it's unlikely that they'll see your question.
However, you'll also see (over on the right of that page) an option to message Chancery. That's probably the best option to get a response from a specific person.
However (again), as they've not been here for a year it's unlikely that they know much about PA-aware consultants.
Probably your best bet is to start a new thread. From the PAS home page there's a green 'Write a Post' button that will allow you to do just that.
Hi Sandra, I am indeed still on HU, but no longer a member of this group because my B12 injections are ongoing so I no longer need advice on the subject. I've joined up again here just to answer you, so you can contact me on here. I got (and get) my B12 injections in Edinburgh and I can advise you of my doctor/s here if that helps. In Aberdeen, I used the Calsayseat medical practice and saw Dr Adams. I never consulted him on B12, however. That said, he was the best doctor I saw there: easy-going and he listened to you - at least within the context of an NHS 10 minute appointment! If you need their full address or phone number let me know. I'm not sure if he's still at the practice - it was a BIG one - but I'm sure they could tell you where he went if he's moved. Let me know if you need any more info!
I am also suffering from a B12 deficiency and wondered could you give me the names of the Practices you mentioned that are good at dealing with B12? I am also getting nowhere with my Dcotor here in Edinburgh
Hi, Misty, I saw Dr Peter Dorward at Southfield Medical Practice up until very recently - it was him who sanctioned my B12 injections and ongoing treatment. However, be warned that he was not in favour at first and I had to compile a dossier of research and data to win him over. However, two things:
1) if your B12 figures are actually below the official NHS guidelines then you should have no problems getting B12 treatment anywhere. You're entitled to it, and you have no need to change doctors to get it. All you need is a copy of the NICE guidelines for treating B12 deficiency and go to your doc with that. You'll find them on Google. Just type in NICE guidelines B12 deficiency. That gives you the full protocols which you can then insist on with your docs.
2) If your B12 figures are NOT below official guidelines but just on the low side then me having had the B12 treatment will help you, because Dorward is already broken in, as it were! But you will have to offer a convincing argument so do your research first!
I can give you the name of my current docs, but I had a fight there too, but again, since they are treating me it should help to convince them to give you treatment too. I'm afraid docs are very out of date with B12 treatment so they are hard work! l
Let me know if you need any more help. Best of luck!
Hi, I bought oral spray yesterday, I still feel rubbish but I have been using the spray all day yesterday and all day today so I have quite a few months ahead before I will stop feeling like a zombie.
Called the doctors today and was told they had my blood test results back. Sadly a doctor has had a look at them and deemed them satisfactory.
B12 : 231
Iron: 135
Since October my B12 has dropped from 271 to 231. Not that I trust serum tests but I am all out of answers. I think I have sourced injections from a family member who had a gastric bypass, but it just doesn't seem right to have to medicate myself.
Chancery I whole heartedly agree. The treatment I am receiving is terrible. I live in Keith, there is only the one doctors surgery so my hands have been some what tied.
The erratic/ non coherent appointments have been bad luck or by chance. I have had a few regular doctors but none that I have felt any confidence in. When registering I had to sign a form to give permission for them to request my previous records.
The whole saga has taking one turn after another. They didn't seek any of my Swedish records and the symptoms I have been presenting have been written off as anxiety and depression. I have had a lot of life changes around moving from Sweden and since with studying and personal dramas. I was referred to a physiologist and we have worked on my anxiety as well as being given a half beta blocker to deal with anxiety symptoms and a higher dosage of fluoxetine but with ever decreasing anxiety the symptoms of laboured breathing on exertion, numbness and tingling in hands and feet, lack of concentration etc. have continued as bad as before and increased. So far I haven't had many choices as to which doctor I use, my regular one treated anxiety and considered my symptoms to be caused by mental health but she has now move to another practice (in England), the emergency appointments have been from feeling so ill I have been worried. Not being able to walk two meters without a dizzy head and nausea is frightening. When I had my injections I would have the odd cold, maybe one or two a year and they weren't around for long. But now I have more colds than I am healthy.
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