I joined the forums a few weeks back when I discovered I had a B12 deficiency and doctor made an emergency appointment for me to get my first loading injection followed by 5 more over the next couple of weeks, last one was 31st August.
Loading doses - WOW, what a revelation - I've suffered from anxiety and depression for many years and never really known why as I don't see myself as having a particularly tough life and whenever they've tried anti-depressants I've taken myself off them after a few months cos they just rendered me useless, second time I was just shaking and so stopped them. When I got my B12 shots though it was like night and day - I'd spiralled down a lot over the last couple of years and ended up back living in my 80 year old dad's spare room at the age of 45 practically bed-ridden for a year waking up every day thinking how bad a human being I was. I went through days when I forgot who I was and what I liked so I wrote notes down like swimming, cycling, etc. - all now I can see is this "brain fog" people talk about.
I had a lot of headaches over the summer and then my vision got a bit blurry and I think that's what led the doc to test me for B12, I'm so glad she did as I cannot believe this seems to be the issue I've been trying to figure out for many years - was it me that was wrong? my business? No, it's B12!!
Now I'm linking it back to a lot of things and not knowing what's connected and what's not - my mother's spent a lot of her life being ill and was diagnosed with Parkinsons once and says she was in a medical journal for being the only person to recover fully from it but I see Parkinsons is another misdiagnosis of B12 deficiency. Currently she's recovered from breast cancer but battling high blood platelet levels which I read could be a cause of the treatments she's had previously and now she's worried the specialist who's treating her isn't a specialist cos she can't find him on the net cos he prescribed her this 'last chance' chemo drug then didn't sign the papers so that's all up in the air but her signs are all B12 IMHO. I remember visiting her in hospital as a kid when she had bad migrains affected by lights and so on.
I used to get worse headaches as a kid and remember fluorescent lights affected me, I had that experience again today at the supermarket and it was raining so thinking it's a pressure thing. I've had headaches again for the last few days and my blurry vision is pretty much all the time now so I've booked up an appointment with a different doctor this time round for Wednesday - the last doctor didn't tell me what was going on, I asked one of the nurses who injected me what happens next and she said you get injected every three months and I asked for how long and she just shrugged her shoulders, which was nice. So I asked the next one and she said I get levels checked in a year to see if it worked or not but I'm not waiting that long. When I was on the loading doses there were some days I felt what I'd call "normal" - one day I was particularly "high" and cycled 10 miles and then walked another 5 later on that day. That's all I've ever wanted to feel - normal lol!
I've been looking back over my life on things - even little things like my mum saying yeah my sis was all energetic pushing me around but I was happy to just lay in the pram. At school I was told I was intelligent but lazy. I've never thought of myself as lazy though, just trapped inside a lazy body lol! I love when I get out cycling and swimming and gym but I couldn't keep it going before because of the mood thing. I've always had weight issues and managed to sort it out once ten years ago when I cut out all carbs.
Anyway I digress - I've been doing a lot of reading and read about the guidelines which say they shouldn't stop if there's neurological issues until improvements stop so I was going to mention this to the doctor on weds, he was the green party candidate so hoping he's a bit more amenable to listening!
I really hate the idea of self-injecting but I'm eager not to fall back down again - I'm feeling OK at the moment but feel I've had a glimpse of "the good life" and want it back! I'm also extremely worried about my sight as, well, it's my sight!
I've always been paranoid about having some kind of brain tumour, perhaps it's just the B12. I have noticed the last couple of days I've been a little more paranoid about stuff so am worried the B12 is just leaving straight away, so I thought I'd pluck up the courage and post here - I've made a list of stuff to mention to the doc on Weds - get my levels if I can, folate is an ingredient but I don't really understand that one yet, and the guidelines re loading doses. Anything else I should ask/look out for/do? Daily headaches a pain, blurred vision is annoying, I just want to get on with life!
Thanks for being here!
p.s. I'm beginning to realise just how much I've built up my entire life around being able to cope with the fact that I know some days I can't cope, from cooking lots of chilli up so I know I have food to being self-employed as I know I don't do well in office situations, now I know that's more down to the paranoia side of things as always 'feeling the vibe', which in most offices suck badly lol!
Thank you for sharing your story, I'm sure at lot of forum members can relate to aspects of it.
I'm assuming you're in UK because 6 loading injections over 2 weeks followed by injections every 3 months is a pattern of treatment found in UK. It's given to those with B12 deficiency without neuro symptoms.
"I asked one of the nurses who injected me what happens next and she said you get injected every three months "
What the nurse doesn't appear to know is that in UK people with B12 deficiency with neurological symptoms should have the following pattern of treatment....
A loading injection every other day for as long as symptoms continue to get better then injections every 2 months
Do you have neuro symptoms eg tinnitus, tingling, pins and needles, memory problems, balance issues?
"read about the guidelines which say they shouldn't stop if there's neurological issues until improvements stop so I was going to mention this to the doctor on weds"
GP can find the info about treatment for B12 deficiency with neuro symptoms in
1) BNF British National Formulary Chapter 9 Section 1.2
GP will very likely have a copy of BNF on desk or bookshelf.
Flowchart outlines when PA (Pernicious Anaemia) and Antibody Negative Pernicious Anaemia can be diagnosed in UK. Flowchart makes it clear that people who are symptomatic for B12 deficiency should have an Intrinsic Factor Antibody test and start initial B12 treatment.
Have you had an Intrinsic Factor Antibody test?
Do you have a diagnosis of PA?
PAS (Pernicious Anaemia Society)
If you have a diagnosis of PA or suspect that PA is a possibility , might be worth joining PAS. They can offer support and info on PA. You might be able to speak to them before your appt on Wed.
There may be stories on Martyn Hooper's blog that are relevant to you including how PAS has supported people seeking a diagnosis and correct level of treatment.
Thanks for the further links - yes I'd seen the posts of these guidelines before, perhaps from your good self - and was planning on printing out the relevant paragraphs and taking them in. As mentioned he's a green party candidate so I'm hoping he's also a bit more 'clued up' and open to this!
Yes, I'm in the UK - I signed the B12 petition - how ridiculous this situation is - I just feel I'm very lucky for finding out and having this welcoming supporting community around with so much info too.
I've suffered from tinnitus all my life, and yes, quite a lot in the last week. Had memory issues before the loading doses but don't think they've reappeared so far <insert joke about not remembering here;)>. It's mostly the headaches and vision at the moment.
I gave my GP a copy of Martyn Hooper's book ""What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" which is up to date with UK guidelines.
Also found these books below useful
"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper
Has several case studies.
"Could it Be B12; An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)
Very comprehensive book about B12 deficiency with lots of case studies.
Wow thanks for the links, not got the cashflow right now to be buying my doctor books but it's good to have the references.
As I was doing my research I've been tempted to set up a site for all the links I've been finding - there's quite a few ones out there, this one seems to be the main one, I'll see how it goes - setting up community sites is what I do for a living using free/libre/open source software & need a pet project so might do that, I think we need to get this message out a lot more, can't believe I hadn't come across it before.
I was pretty angry about that one day, then I realised there's no point being angry and I'm actually very happy I've finally found out what the issue is, and the journey's only just begun really!
Welcome to the forum. First of all, lots of virtual {{{hugs}}} Sounds like you could use 'em!!!
Anyway, just to say, I've read your post with great interest. Pleased you've discovered you need to continue alt days until no further improvement re neuro symptoms, and then 2-monthly, not 3-monthly. However, it seems not many doctors understand this regime, unfortunately, so you may want to self-inject, as many of us do, myself included.
Let us know if you need help re finding best places for ampoules B12, syringes and needles
I just wanted to say 'hello' but I'm rather tired just now so will finish here. More hugs {{{hugs}}} coming your way
Thanks {hug}{hug}!!! Yes, I'm hoping I don't have to find out about self-injecting and it's all in my mind and my B12 levels are fine... but I've also a feeling it's not so need to get adjusted. I was/am planning on going traveling as can't really afford / want to afford UK and there's cheaper sunnier places to live and as all my work is via the net I can (took a long time and lots of saying "no" to be able to do this though!) so I'm a bit apprehensive about that but sure it'll be fine. Can't stay here, it's nice to visit the folks but y'know... need my life back!
I would like to add a small word of caution about all the exercise. It is very easy to go overboard with physical activity once you feel like you're starting to get your liveliness back. Many of us have found that over-doing the physical activity causes a faster return of symptoms and can even make the next injection feel less beneficial. The best recommendation I have is to learn to pace yourself. Stop before you think you have to.
It's great to be able to be physical again, but treat it like cake and enjoy it in moderation.
Hiya - thanks, I started cycling again over the summer and very aware I can go overboard on it so was taking it easy but it was just that one day it seemed so much easier, and it was a lovely day and I wanted to go record a vlog by the reservoir so ended up going out for the walk later. It's good to hear the link though, that adds a bit more understanding.
My latest thinking is my love of red meat is my body craving B12...
in reply to
...although I did give up (mostly) dairy products many years ago as I was bunged up all the time. I heard B12 comes from that but I do eat a lot of red meat and fish so should be getting enough from that, if my body works. Currently due to where I'm staying I'm eating some cheese but normally I don't have any dairy.
Hello oddbod , sorry to read it took long time for your diagnosis , I hope you improve after correct treatment . My OH has PA and also took a long time to be diagnosed , he also has headaches and blurred vision , floaters in his left eye but eye doc think unrelated to b12 deficiency and after lots of tests he's waiting for an MRI scan . I think you could ask your GP to refer you to an eye clinic or at least see a good optician asap . I'm glad your finally on the road to recovery at last , good luck
Thanks for your reply - it's great everyone posts here because I didn't associate "floaters" (lol!) and don't have any right now but that's something I have had quite a bit, never thought of it as a problem really, I just remember having this thing I follow and try to 'catch' in a way, treated it more like a little friend than anything else - interesting, didn't know it could be B12 too so would be interested to see how it goes with your OH.
I can't remember the last time I had it, not since I've had the blurred vision, and I've only had the blurred vision this year, hope it's not the "next stage" of something
I had my eyes checked at the Boots opticians over the summer when I first went to the doctor about this and they said I was still OK - I mean, I wouldn't say my vision is "blurred", it feels more "blur-sparkly".
My husband was referred to an eye clinic with suspected temporal artiritis , his biopsy was negative but they found pressure behind his eye so referred him on , I think completely separate from b12 deficiency . So worth asking to be referred as could be anything . Good luck and hope you get well soon , sounds like you've had a rough time .
Thanks, I'll add it to the list of things to mention tomorrow! And thanks for your concern, I'm actually super-happy and super-excited about finally discovering this, as for rough time well I honestly am blessed I was born into the UK and the family I was with understanding parents even still at this age, I mean that's got to be in the top percentile of the world, I don't have to go rummaging through industrial waste to find something to sell or try and escape over a border or - well, you know. So sure, I've had issues but also not *that* bad!
Like you, I have felt for much of my life that my energy levels fluctuate inexplicably, and I have accused myself of having no willpower. I was also recently diagnosed with PA. After my loading doses of injections, when I was waiting for a monthly injection, the symptoms returned. After joining the PAS and getting some helpful information, I began to take methylcobalamin in sublingual form. That actually worked really well so that I don't think I will need injections after all. Now I take methylcobalamin twice a day because I have found that if I take it at about 1 pm I am still able to work into the evening instead of experiencing that 4 or 5 pm 'collapse' that affected me on many days. I feel like a new person, or perhaps someone I recognize from my best days. Jobs which seemed almost impossible in the last 2 or 3 years now seem easy and routine. I hope you find a B12 schedule that works for you.
Great to hear you're finding your particular combination of things, I think that's what it's all about at the end of the day, and that's only happening as we are now connecting via the interwebs more and sharing information as opposed to the top-down nature of how the world has been up until now.
I'm super-excited about knocking things off the list one-by-one as I learn more - was really hesitant about posting here last night in the usual "oh nobody wants to hear my moaning" but I know the sharing helps and have gained further insight into the B12 stuff and new insight into the "floaters" lol still can't stop giggling on that one - but never really saw that as an issue before, now I'll investigate that too.
Glad I've still got some time to enjoy life "as it should be" instead of what seems like a constant battle to "be like everyone else"!
Thought I'd make my profile a bit more personal, hello all and thanks for your wonderful replies!
I've no problem in being visible on the net, I'm @stevepurkiss pretty much everywhere so feel free to connect if you see me around, and hope I can be of some help too in time!
Peace & love,
Steve
Yay more B12 on the way! Thanks to the links from Sleepybunny and everyone's help here I managed to get them to put me on another loading set.
The receptionist/appointment booker said they didn't have anything until October apart from tomorrow and I said I can't wait till October, could I do one tomorrow then the rest later as there was a week gap when I did the loading shots last time to which she said "last time? So you only have one now", I said no I'd sorted that with the doc, she insisted on checking with the doc, he said it was ok so I've got one shot tomorrow then 5 over the first two weeks of Oct. I'm glad as I could hardly stand up this morning, was feeling quite dizzy and worried about cycling to the docs - it's only 10 mins but decided that the bike would keep me more upright than walking plus I didn't have time by then anyway, didn't know I was gonna feel that dizzy this morning!
So anyway I took along printouts from the guidelines which he took notice of when I said it was the NICE guidelines "Oh, NICE", i.e. yes that's official and I printed out that initial reply with the links, and the sheet with the symptoms and ticked the ones I've experienced. He took notes saying I'd done the initial shots but was seeing returning symptoms after two weeks. He said the test came back negative for PA and I said great so that means I can take tablets/oral spray hopefully rather than inject. He said no they don't recommend taking the tablets but to do the injections, I said why cos PA is if your body can't absorb the B12 properly to which he replied "well we're not B12 specialists at this surgery". Well neither am I so I don't know either, I've just read a lot of the questions here about it so guess I'll see in time - I said I didn't want to take the tablets or sprays as I thought that might mess up tests that we're doing here.
He said the wheat test came back ok, I said I'd given up wheat years ago, he said "oh, well the test wouldn't have worked then if you hadn't eaten wheat, are you likely to eat wheat in the next two weeks?" so I'm like "well I did the last couple of nights as I do when I'm stressed and I'm staying at my dad's and he has wheat so I end up eating wheat, and dairy, then feeling bad the next day cos my stomach doesn't take it well". So they're not going to test me for wheat.
I said I'd seen a glimpse of the light after my loading doses and I feel like I went a bit up the mountain but now sliding down fast, so that's why I want the proper loading doses. I said the main thing I was worried about was any long-term damage caused by not discovering the issue previously, specifically vision as I've got issues with that now - and I mentioned the 'floaters' and my 'friendly floater' I had for years lol, and the stomach cancer potential, to which he kind of nodded in agreement that the long-term effects were the main issue to discover.
I explained a bit of the similarities I'd seen with my mother's health and illnesses, plus the links between what I'd had throughout my life, so that he knew. I said I'd been practically bedridden for the past year and couldn't wait until end of November which was when the next injection was supposed to be as I'm rendered useless without this stuff. I think he could tell my brain was a little confused/manic - still is a bit, happens when you have tinnitus, headaches, and stress mixed with excitement about finally discovering life-long illness issues!
Now previously I was told I'd be injected once every three months then they'd check the levels after a year, he said they'd check after 3 months. He said usually people would have the loading doses then discuss whether they needed more every 3 or 2 months, so sounds like if I get up to a 'normal' level then I can get every 2 months if needed, will have to see how the next set goes I guess, everyone's different.
I asked if I could have the levels he said he wasn't sure he had time, I just kinda stared at him in the kinda "I don't understand, are you saying you can't tell me the results of my tests" and he spent all of the couple of minutes it took to put the levels and change some wording around on a Word doc to make it look as if it was actually taking longer than it really did just to give me the figures (only joking, he was merging them onto one page), so here they are, still not sure what they all mean but understand the B12 should be 200 I believe:
....I wouldn't say my vision is "blurred", it feels more "blur-sparkly"......
I was intrigued by your description of your vision. I have a vision problem called Visual Snow which I think is related to migraine and I wondered if you had the same thing.
Hmm... could be, certainly sounds more like it and it coincides with the headaches/migraines! So hopefully that means it's nothing 'worse' and once the B12 is back in and I'm not getting the headache then it'll go too, will report back - thanks for the heads-up!
Hope your GP is aware that it is possible to have a negative result in Intrinsic Factor Antibody test and still have Pernicious Anaemia .
This is called Antibody Negative Pernicious Anaemia.
The flowchart below from BSH (British Society of Haematologists) Cobalamin and Folate Guidelines outlines when PA and Antibody Negative PA can be diagnosed in UK.
The fact that parietal cell antibodies were negative I think makes PA less likely but if I've understood link below correctly, it seems to say that about 10% of people with PA do not give a positive result in parietal cell antibody test.
My personal view is that there may be a few people who have negative results in IFA test and parietal cell antibody test who still have PA.
If a person's parietal cells have been more or less totally destroyed then I assume their body would not produce parietal cell antibodies.
Some people never seem to find out the reasons why their B12 is low or why they are symptomatic for B12 deficiency. I guess it's possible to live with that as long as you get the correct treatment.
Hi Sleepybunny yeah I'm realise I'm "in the trap" now and thanks for the further info. Last night I booked up another appointment for next week, this time with the original doctor who put me up for the B12 test but then didn't want to see me after cos the PA came back negative.
I realised when I went for my jab yesterday and the nurse was "So you're back for another loading dose" and that I'm booked in for another 2 weeks of jabs that they still don't "get it" - with me ticking off most the issues on the neuro issue section I should be getting injected every other day until no further signs of improvement as there's the remote possibility there's still chance for repair. When I look back now I can see I've been like this for a number of years now - all the networking meetings I booked to go to but then was too anxious/paranoid to go which meant my project pipeline dried up and the not getting out of the flat for months on end I can see how this can be tied into the B12 cos when I did the loading doses I saw a glimpse of light, but only for a week now it's back down again, constant headache, aching to move anywhere. The jab yesterday at least seems to have taken the anxiety/paranoia issues away but I'm still confused when trying to string a sentence together with my dad!
Off to the smoking clinic in 10 mins, glad I managed to give that up, I hear you've twice the chance of getting lung cancer with B12 shots if you smoke, so good timing there body yay!
Going to ask at the chemist about headache tablets as next jab not till 3rd October, might see if they have any B12 supplements too, wasn't sure whether I'd muck up any tests or not but would be good to see if they help, probably be ridiculous price there though and I see there's lots online. But if my body only takes injections then that'll be a waste of money I haven't got
So much to learn, thanks for helping the torch see a little further with each of your replies, I would apologise for the length of mine but it's the only way I know, to go with the flow and people pick things up on the way that help both me and them sometimes so gonna stick with what I know works
I had to resort to self treatment for several years as I was unable to get b12 treatment off NHS other than one set of loading doses despite years of being very symptomatic and one test that showed B12 below range.Most of my tests were "normal" despite being very symptomatic. IFA test was negative.
I need huge amounts of B12 ( far more than NHS will allow me) as symptoms come back within a few days of a jab .
Well I'm going to try my best to get it off the NHS first before I self-inject, I've spent my whole life saying I could never inject myself I don't know how people can, now my mother has to and looks like I might have to as well, although seen there's the autoinjectors which may or may not make things a bit easier.
If my levels are falling this low after just a week since the loading doses then obviously there's something more to it. I asked the chemist about the oral spray but they said they didn't do much more than a placebo as the injections are 100x the amount so I didn't get any. I asked about the headache tablets and she was super-happy to walk me through how I could start on paracetamol then add nurofen if that didn't help then ramp up more if that didn't work, when I know I didn't have headache at all after I had a few B12 jabs! Plus the headache is only one part of it, wobbliness, vision issues, brain fog etc.
I'm not sure about the potassium levels - the only results they'd give me I posted above, I asked if there was any further access to my records they said no. I looked on their website and apparently you can request a copy of all your records for £50, but it also says on their website that they'll be giving people access to their records by 2015... the state of our NHS IT is abysmal. But that's another story I plan on working on fixing...!
As for causes, personally I think it's hereditary from my mother's side, plus I've not helped it with alcohol but I also haven't drunk anything like the amount I see many people drink, but I'm sure it didn't help things. But the story fits, I spent my childhood visiting my mother in hospital for one thing or another, big migraines and sensitivity to light, misdiagnosis of parkinsons, now high blood platelet levels. She's spent her whole life battling the health system, probably just had a B12 deficiency issue that was never discovered.
Nurse today said she'd seen such a rise in the B12 stuff lately so I explained the issues surrounding it, certainly seems to be a groundswell of activity as they do need to be educated more, I mean it's in their own guidelines they're not supposed to stop after two weeks if neuro issues but they all stick to that.
So fingers crossed I'll convince the doctor next tuesday, we'll see.
"I asked if there was any further access to my records they said no. I looked on their website and apparently you can request a copy of all your records for £50, "
I don't think what they told you is correct if you're in UK. I don't know if if accessing medical records is different if you're in Scotland or NI
Some UK GP surgeries have online access to a summary record. It is only a summary and may not have everything you want to see.
You can ask just to view your records in UK, no charge for this and I guess you can take notes from screen.
You can ask for example for paper copies of blood tests you've had recently. Think maximum charge is £10. I get copies of all my blood test results and in past have been charged up to £1 per A4 sheet.
Thanks for the links! Their data might be out of date, what it says is:
"Access to medical records
At present copies of medical records can be obtained by written request. A fee of £10.00 is payable for a computerised summary or £50.00 for a full set of photocopied notes. We hope to be able to offer online access to a summary of your medical record by March 2015."
I bought my entire GP record for £50 (apart from anything they withheld - but they don't mention if they have chosen to do that). I had to make a Subject Access Request or SAR. It was a doddle. I wrote this letter and delivered it by hand :
Dear Sir/Madam,
I wish to make an application for copies of my medical records under the Data Protection Act 1998. I would like to see all of my records in all formats, and also wish to be supplied with photocopies of everything. Please could you let me know what the fee will be and send me your application form.
I look forward to hearing from you.
Yours faithfully
I was never sent an application form they just did it on the basis of the letter.
If I was going to write it now I would change the wording a bit because I think it is rather clumsy. I wasn't very well at the time I wrote it.
I actually got my records on paper - a massive pile with lots of duplicates in it. Any future letters I send on this subject (I'm intending to write to my local hospital one day to get copies of any records held there) will say that I will be happy to receive them on CD or paper, but I would prefer CD.
Good to know it's available, it's on my list of stuff to get. Might have to enclose a USB stick though, haven't seen a CD drive for years! But yes, scanning would be a nightmare.
Yes, very good point! I suspect they wouldn't want you to supply a USB stick of your own though, they wouldn't trust it. But it might be worth phoning up in advance to find out.
It will be a good opportunity for me to educate them. I'm sure they're gonna love me by the time I'm finished here lols
I'm a Free/Libre/Open Source Software guy, I've no idea why our entire NHS is trying to work on proprietary stuff that is riddled with holes and things like doctors surgeries all get sold different stuff when they do all the same stuff. But that's another thread
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