Hi. I am 67 and have had the year from hell during which I have not been trated for b12 deficiency originally clinically diagnosed as pernicious anaemia ( gp who did this retired, those left are in denial on b12
I spent a lot of time in hospital this year with sepsis and a spinal abcess. It left me unable to walk unaided and unable to do rehab for fear of recurrence. Doctors there reluctant to treat for b12 in case it exacerbated already damaged spine. Currently awaiting stabilising surgery which is unlikely to improve my current situation, but will prevent further damage. So complicated......
After returning home I started developing very uncomfortable neuropathy in hands and feet, now extending to mid thigh, and making it very difficult to handle anything, Even one fingered typing is problematic! Also have balance issues nd vertigo that are increasing, tinnitus, and the reddest swollen feet you could imagine, legs not too bad but tops of feet shiny. I have been here before, 4 years ago, and b12 and folate helped immensely. I asked in september for new testing as I have not had a single injection since march 2015, and no folate supplementation since the end of that month. I requested this at the beginning of september, it didn't happen till 3rd November. GP refused to do a FBC in spite of phlebomomist taking a blood sample for exactly that, and only requested b12 and folate, no other figures came back. Results below.
B12 288 ( ref range 200-900)
Folate 2.6 ( 4.6 - 18.7)
I know what these mean. Also why I should not supplement folate without b12.
Is there anything more that can be deduced from these figures? We are now awaiting a response from my Parkinsons neuro. He is sympathetic, but also sceptical about b12 issues, nd seems an odd choice for referral. i.e. not the usual route for b12d. The letter to him was dated 12 Nov. and gp person, not doctor, phoned me yesterday to say they are awaiting his response. In the meantime I fell recently and left foot like a balloon, and yesterday nearly fell twice. The last few days have been very dizzy wihen lying down. And generally feel utterly wretched. I am uncharacteristically losing lots of words. And hair. All my symptoms being assumed by my gp to relate to my spunal situation, even the sharp bursting sensations in feet which I know to be damage to capillaries ( I can see the tiny evidence, petechiae). House bound, not a single person other than the phlebotomist from my GP has seen me in over a year and a half!
So my question is, what can be deduced from my puny results above that might support my case for dagnosis, because I am pretty sure my neuro won't do anything other than re reun the tests, and I am likely to change my GP as soon as I can get my PIP case sorted. About a month, I think.
I know I really need that FBC, but it is almost impossible to get tested, resources said to be tight and have currently been waiting for 'urgent' renal function blood tests for over a month! And can't take folate for obvious reasons, it will skew any potential results.
Frustrated beyond belief, as I have been here before and know frequent b12 helps immensely, but can't even get the usual three monthly injection. Or start adressing the very clear folate deficiency.
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Lindylanka
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I am great believer in B12.Take a supplement tablet daily or did until recently when doc looking for reason for low blood count having postponed my hip replacement op, found it wasnt depleted as he expected as I did have PN as a teen - but higher than recommended here. Told me to stop daily and go to 3 times a week. It was when I started taking this a couple of years back on reading internet forum where someone had swollen feet and calves as did I and had taken a diuretic for 6 years with no result and feet ugly now red shiny on top gross to look at. B12 + COQ10 +D3 added to my daily intake of Garlic and a multi vitamin and down came the swelling. Hip postponed as said didnt like low blood. GP sent for for scans as well tested B12 for deficiency and found I had higher than recommended here in Australia. But not in USA. theirs if higher ie D# there is up to 10,000 IUs daily here 1000. I have been improving except for arthritis and not until I had a fall and got taken to Hospital by ambo';s and doc there said I had vertigo - had told GP but nothing done. He then sent me for X Ray and they found my arthritis was worse need surgery. I put disinterest down to being over 70 and now anyway found a new GP who does care - unusual eh he listens and isnt disinterested.
so do feel your pain to some extent anyway. Its very frustrating. Hope it gets better for you. I spend time researching my needs on American sites as they are well in front so can then talk with knowledge to the GP next time and it works for me. Makes you feel in charge of your own body. I use a walker right now as almost housebound til get hip done then knee same leg and other leg is joining in the fun seemingly and I also have vertigo it was a fall that got the GP to send me for Xray and wish I had been more self assertive instead of just letting them tell me its arthritis and age.
Having researched b12 and folate it seems that folate deficiency, which is so linked to b12, may well be the culprit where vertigo is concerned. Thanks for your reply and best wishes, it is awful being housebound when you feel that you can be improved with proper treatment and a quality of life regained. I believe there is age related disinterest, and too much is put down to age instead of wellness or lack of it. Same problem, different side of the world. Hope the heat is bearable for you right now. Your feet as described are exactly like the ones I see when I look down.
70's and only now having been denied my op after waiting since July 15 did I find out PA is for life on here. No one medical ever told me.
I was 15 when told this was cause of fainting etc and had to have iron injections daily at local hospital for 6 months. Maybe since I am in my 70's now - back then they simply didn't know!
You wrote you had "b12 deficiency originally clinically diagnosed as pernicious anaemia"
If you are in the UK and have a diagnosis of P.A. then you should be on B12 injections every two months (at least) for the rest of your life.
Even if you don't have P.A. - at your age the low level of 288 and given your symptoms and past history of treatment for B12 Deficiency you should still be having B12 injections at the very least every three months after initial loading doses every other day until there is no further improvement as per the BNF Guidelines.
I am not a medically qualified person but there are others on here who will be able to give you good advice.
Hi Clive and thanks for your reply. My PA diagnosis was made on the basis of having low folate, b12 macrocyes and several auto-immune conditions including generalized vitiligo so bad that people now don't recognise me as a once mid brown person now transformed to pale lemony white! This doctor retired, he gave me an education on b12 first, and instructed me I would be on injections for life, and I must educate myself. This diagnosis removed by a different gp who did a IFA I think which came up negative. All woes stem from this
My original loading doses were messed up by the practice committee restricting them to one a week for three weeks. Later fought and got three months better treatment.
I have given the practice all the guidelines.
My mainworry is that a new practice could be just as resistant, and that my balance, ability to mobilise and almost defintely clogged (with macrocytes) feet are resulting in more and more falls and near falls, which I cannot prevent myself.
I know what the obvious course of action is, but can't get anyone to do anything.
You might have guessed I am not an unempowered patient, which makes it all the more frustrating.
But thanks again. I have learned a lot here, and from your posts as a veteran of PA.
They are refusing to treat the problem at all, and will only issue existing prescriptions! test results to them indicate no b12 deficiency, i.e. over the ref. range, but a distinct folate def. which they are unwilling to treat because risk of sub acute degeneration of the spine. So the solution, as I see it is starting b12, and actually recognising that I have the clinical signs, i.e. paying attention to the NEQAS advisory. But you can lead a horse to water etc.......
And to do an fbc, which they for some crazy reason think is unneccessary. Just the MCV figure would help.....
Type a letter to be included in your notes. Keep a copy for yourself too. State that you will hold GP responsible for any degenerative dammage to your nerves caused by lack of treatment of symptoms. Give a copy to the practice manager too. Enclose a copy of guidelines. I bet they'll think again. Good luck.
Interesting as my B12 count GP said last month was 945 and too high and all I have ever had is to take a supplement 1000mcg daily B12 for last 2 years - from what I have found by results is a reputable company. Not all are equal. No research to be found much but I have done mine by how I feel they work. I take those made by Thompson's of Australia - maybe they export them to UK ? I use mostly theirs these days, D3 as well as Organic Iron etc now as started taking this as doesn't upset my system as the medical high dose did. To try to up my blood count - GP had me on high dose for 4 weeks didn't change count. So when he get back off hols, will get him to test me again to see if Thompson's has helped at all.
if you aren't a member already I suggest that you actually join the PAS directly and contact them for support and advice as you need more medical input than this forum can really provide.
I really feel for you, and you could have been describing my story in your post, neuropathy, balance problems, forgetting words etc.I'm 66 and have experienced most of the symptoms you state. I didn't know what was happening to me, I just kept feeling worse and worse.
I had been on levothyroxine since about my late 40s when I hit the menopause after being on nothing (and needing nothing) since a partial thyroidectomy at the age of 26. I mention the Levo because it was while looking into alternatives (my Gp seemingly unable to deal with my low T3 at all) that I had loads of other tests and came up with a B12 of 284 (190-900). Of course my doc said it was 'fine' because it was within range.
On this wonderful forum and read and read and posted question after question for about 2 years before I felt I had enough info to take the plunge. I now don't take levo, I take ndt and I also take 5000mcg of sublingual (there's good reasons to use a sublingual one) methylcobalamin + a Thorne B complex every day. After a few months on the B12, when my blood test showed a B12 of 1400 I changed to a tablet of 1000mcg but the symptoms started to return. I thought what the hell. and went back to the 5000mcg. You can't overdose on B12 so I knew I was alright.
Don't wait for the nhs to sort you out. I put it off for ages thinking that if I self medicated it would skew blood results but I soon realised that there wasn't anyone out there who was going to do anything anyway. Low B12 left untreated can have irreversible effects and I wasn't prepared to risk that.
The B12 and the B complex (people on here suggest taking the 2 together for maximum effect) probably costs me about £15 per month but it has had a benefit that I can't put a price on. One year ago I was falling asleep in the afternoons, forgetting words and dragging myself up the stairs. Yesterday, Wednesday, I went out with my walking group and did a 5 mile hike and in the evening went jive dancing for 3 hours - and this is 3 months before my 67th birthday! I couldn't have contemplated it 12 months ago.
Yes I have other ailments, I had a hip replacement 2 years ago and I know my back will ache a bit today because of yesterday's exercise. I have osteo arthritis in my back but I feel so GOOD that I don't mind that. My mental state has improved SO much.
I know in the UK it's quite a leap to self treat - we have so much respect for our nhs doctors that we tend to believe everything they say. Remember they don't / can't know everything and their training is , to some extent, governed by what the big pharmaceuticals want. I read on here once that a gp told a patient with low B12 to 'just eat more green veg' when B12 comes from fish, meat, dairy and eggs!!!
Am I a cynic? Maybe, but the path I've chosen has made me feel great and I'm hoping that when I do go back for my annual thyroid blood test the gp will respect my decision to self treat with ndt. We shall see I'm 100% sure that he won't be interested in the fact I'm taking B12 tablets. Vitamin supplements are seen as something that's just a personal choice - why not make yours? xx
Thanks for all answers. I am a PAS member. Have neuropathy so bad in hands I cannot even cut nails, ashamed to say. I cannot self inject right now and have no one who will agree to help me. My initial diagnosis was four years ago. On a short trial of three times weekly shots which lasted six weeks improved immeasurably, and was approaching the kind of wellness that Matty220 describes with the exception that I also have Parkinsons, and have described this years spinal issue above, it could have happened to anyone any age. Five years ago was growing own veg, keeping house etc., and being a good parent.
LIndylanka.. I am sorry you are so ill...but please do as Gambit advised and contact the PA society by telephone. When I was in really I difficulty I rang Martyn Hooper and was connected to the answering machine. He rang me back the next day although I didn t even leave a message and I am so glad he did. Best wishes.
Recent B12 test for deficiency thinking why low blood count, it was 8 and range GP said is 7 to 15 so a bit low but not so as to postpone my hip replacement in his opinion said he would operate. And it came up as 945 he said which is a bit high and told me to take it only 3 times a week or even once. This was only a couple of weeks back.
Blood test proof that it works. I did have iron injections for 6 months when 15 and boy do I remember the sore buttocks!
I will have to research folate as not sure what that is.
Best of luck we do need to be proactive IMHO as its our body and we suffer if it isnt happy. As you well know from experience. And like myself, sure you will do all you can and if cant overdose on B12 then whats the harm and I wonder why my GP said now to stop taking it daily if this is so.
I'm sure you've already thought of this, Lindylanka, but if you phoned your local Patient Advice and Liaison Service (PALS), they may be able to intervene with your doctors, if you give them information about your history, the guidelines and so on.
My local PALS is as useful as a chocolate fireguard, but I hear it may be better elsewhere. Good luck.
PAS tel no +44 (0)1656 769 717 office open from 8am till 2pm every day except Sundays and some holidays. If you leave a message, they will get back to you within a few days.
Have you thought about contacting the person who runs website B12 Deficiency Info? She can be contacted by e-mail.
I really, really do feel for you, you are in such dire straights. As far as I see you really do fit the bill for b12 deficiency.
I'm wondering why your doctors fear that supplementation would make your spine *worse*?
You've been through such a confusing and trying time. I cannot fully imagine what it's been like, but I think in your position I would contact the PAS, also Dr. Chandy's charity, and Sandy Pacholok's organisation. Also b12deficiency.info.
And why not self-inject? I'm not quick to jump on this, but I think at a certain point it's necessary. Nerve damage can happen even moderately in range, and if your doctors aren't responsive to that, why wait on them?
Thanks for so much advice. I have very unsteady and weak hands, thumbs particularly, it limits what I can do anyway. . I have never felt comfortable with the thought of self injection for this reason. I will take up some of these ideas though and have made a start by reestablishing my connection with PAS as a legacy member.
In the library section on PAS website is a document about subacute combined degeneration of the spinal cord. perhaps your GP would be interested in reading it. there is a section on PAS website for medical professionals which your GP might find helpful.
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I'm 100% sure that he won't be interested in the fact I'm taking B12 tablets. Vitamin supplements are seen as something that's just a personal choice - why not make yours? xx
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