I will probably be zonked out before anyone has a chance to comment on my post but I have a question? I am going to GPs tomorrow morning for a chat about my having received 4 of 5 therapeutic b12 injections along with being put on amitriptyline 10mg for what I now know are classic neuro symptoms of b12 def. As written in a previous post 2 yrs ago reading was 340 then around june time this yr. Had dropped to 220 I had by then started freaking out thinking id got MS or something as I'd developed numbness in fingers and migriany type numbness and pain in face and neck as well as earaches and nightime headaches etc etc of course when I asked for a copy of my bloods and saw figures along with Mchc slightly higher than should be I put 2 and 2 together after plenty of reading and light bulb lit up like blackpool illuminations. Added to that my cholesterol levels had been creeping up and that was the only thing dr wanted to talk to me about because I refuse to take statins because of horrendous fatigue that I already suffer. Anyhow I persuaded the dr to consider b12 def. Although she wasnt convinced she agreed to what she called a therapeutic dose of b12 injection of once every 3 months I said could I have it more often and she agreed once a month for 5 months. This is where after all that my question comes in, should I have had a loading dose? I feel amazingly better a few days after the injections for around 2 weeks and then the symptoms creep back by the time I have the jab im beginning to crash with fatigue dizzy some numbness earache etc and am almost excited at the thought of my next jab as I so want to keep well, this month has been particularly bad hence visit to GP tomorrow.
I'd be so grateful for anyones opinion on how I should approach GP on this as I feel lucky to have even had what ive had but its almost like a tease as I feel I could be so much better. Am I right in thinking that I can say that NICE guidelines state that there should be a loading dose before monthly or 3 monthly jabs? Even though my serum isnt under 180. I'm just so scared im going to go in there and at the least she is going to say no, but aat the worst is going to want to send me for tests for MS as she mentioned that on the last visit!!
Crikey, sorry that was all a bit long winded but am getting a bit anxious hoping so much that yet another GP visit might not go my way so to speak.
Thank you in advance for reading and have a good night all.
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jsteg65
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I would let the GP follow up on MS, frightening though that may sound, just to be on the safe side. A fair proportion of MS suffers respond quite positively to B12 and unfortunately B12D doesn't make you immune to MS - there can often be more than one thing going on.
However, given that you have responded positively to the B12 would be good to make sure that the GP doesn't give up on it.
If you can afford it there are other ways of supplementing and you might want to explore those. I find that using a nasal spray works just as well for me as the shots, and I can use that as and when I feel the need.
Thank you very much, off in a few mins will discuss with her. Am supplementing with Jarrows 5000mg sublingual but am considering the nasal spray- thought of MS possibly being an issue is a scary one but you're right best not to ignore. Hopefully GPs got the time for discussion this morning :). Thanks again.
Well good news I think, good news in the fact that the Dr is totally open to the idea that although my initial bloods were not 'under' I am definitely symptomatic and that it is not all 'in my head' also she thought it was very 'interesting' that my symptoms totally disappear for around 2weeks mid treatment after each monthly injection and says that I am obviously responding to b12 treatment. She is going to continue the monthly jabs and says take more amitriptyline if symptoms flare in the 4th week (which I wont do, hate taking drugs that I don't need) and she is going to ring the pathologist and ask for guidelines ( does anyone know are the pathologist and haematologist the same/will know the new guidelines?) I'm praying to the powers that be that the pathologist will put her straight on the new guidelines and let her know about all the recent research which I'm thinking and hoping (again) I will then be tested to see if it's pernicious anaemia. She was talking about maybe tablets instead of jabs which I didn't argue about because I am thinking after she's spoken to Path. she might realise that if its pernicious that tablets probably wont work? anycase at least she has agreed to carry on with the injections and has given me 5 more ampoules for monthly jabs, I was thinking if shes like a lot of the drs ive read about and seen before her, she would just stop jabs and look in other areas! Also at the beginning of the conversation I said to her that although she had mentioned MS I was thinking along the lines that it is more likely to be B12 def and maybe only that (obviously keeping an open mind) and she didn't disagree so MS investigation on the back burner for now which I'm glad about.
There is something on my mind almost constantly atm and that is my dad died of early onset Alzheimer's age just 63 after a long history of weird symptoms and 'depression' which tablets did nothing to allay! He died 71/2 yrs ago and now I'm wondering whether to obtain all his medical records before they can be destroyed after 10yr cut off??? Also my sister is really struggling with similar symptoms to me and has hypothyroidism I keep nagging her to get a reading of her b12 and not just take her Drs word for it but shes not quite as 'like a dog with a bone' as me and hasn't done it yet! I'm quite fearful of the fact that having learnt what I've learnt in recent months that dad so easily could have had severe b12 def. unfortunately he got run over just after being diagnosed with early Alzheimer's and suffered a frontal lobe injury which exacerbated the dementia and everyone just assumed that it was Alzheimer's and nothing else! As B12 def. can have such a strong genetic link and I have 4 children and my sister 3 (indecently thinking about it 2 of her children and our youngest have non specific medical problems!!!) I think we really need to get to the bottom of it.
I was driving home thanking in my head all of you guys on this site and the B12def.org that fight for research,cemented guidelines and treatments giving us all hope and support- without all this information and support I would never have had the confidence to tell the Dr what I thought it 'might' be.
In the US Hematologists and Pathologists are definitely different specialties. To my knowledge a pathologist would mainly be consulted or involved in B12 deficiency diagnosis if stomach cell biopsies were needed to assess for atrophic gastritis. Perhaps Pathologists in UK have different or expanded roles? Always trying to learn so feedback is readily accepted!
Mmmm when the GP rings me I will ask her whichone/who she spoke to and their role. I looked at the top of my last blood test paperwork and the 'speciality' is listed as General Pathology so maybe the people at the blood work labs are pathologists?..
the science of the causes and effects of diseases, especially the branch of medicine that deals with the laboratory examination of samples of body tissue for diagnostic or forensic purposes.
MEDICINE
pathological features considered collectively; the typical behavior of a disease.
Great descriptions, thanks, and that would make sense- hope the one that my dr ends up speaking with knows the pathology of b12 deficiency and PA well ( ;
Your doctors attitude makes me think that maybe, just maybe, the article in the BMJ means the word is spreading - although I have no idea if it ever went into the print version.
Whatever, you've gone from a possible MS diagnosis to a continuation of treatment that is better than most get.
The path comment is interesting also. I would have thought she'd have gone straight to the haematologist. Don't know if there is anything in the new guidelines about pathologists...
They will just pick up, hopefully, the same info that your doctor is picking up on. Unless they actually know more...
I don't know if amitryptiline (sp?) is one of the anti-depressants that oxidizes b12 - someone else might?
Who can say about your dad?
Go steady with who you encourage to take b12. I only say this because trying to help other people caused me an awful lot of problems. The people you know might be different, but watch your step...
that's what I thought at least I've got a continuation of treatment and GP whose interested in looking further, for that I am very grateful and tentatively hopeful that information might be getting through. Mmmm didn't think about the oxidization thing?
I will be careful about not being too enthusiastic about others taking b12 but I can't seem to keep quiet when stating that when a GP says "we've checked your b12 and it's fine" it very well might not be fine! but I shall stop short of advising people to take b12 even if it is own family as I know there can be contra-indications and I don't want it coming back at me!
It's not really a case of harming them because it's not harmful. But because we realise what is happening we can become overenthusiastic in wanting to help them - and most people will patronise you because they trust their doctors a lot more than they will ever trust you. Remember that most people, doctors included, think b12 is 'only' a vitamin. They think b12 deficiency is 'only' a blood condition. They think all problems are resolved once 'treatment' commences.
It's very difficult to hold your tongue, but if you are going to mention it then go steady and try not to overwhelm. It's like trying to convince flat earthers that the earth is round - you end up looking like the nutter.
Really glad that things went so well at the doctors and that you managed to get more B12 - though suspect that you probably need more than you are being given but I guess the journey of a thousand miles starts with one step.
Despite what the NICE guidelines say there are lots of different things that can cause B12 absorption problems and most of them are likely to run in families.
Totally empathise with your concerns over the family. I'm not sure where my own problems come from - could be my father - who died about 14 years ago from a series of heart attacks aged 69 (that's where I get the 'blue eyes' and early greying from) ... and he suffered like me from low mood and towards the end lack of energy. On the other hand it could come from my mother's side where there is a long history of diabetes (MODY). My grandfather died after dementia and I remember that my gandmother was really confused by changes in his personality. Difficult to draw any conclusions though because so many of the symptoms of B12 overlap with B12 Deficiency ... and I'm sort of going on the linkages between auto-immune problems and the possibility that that because of diagnoses of diabetes the doctors don't bother to look any further - slightly more worrying is my mother - reflecting back in the last few months there is so much of her symptoms that I could put down to B12D but could also be put down to diabetes ... the one that I think may not cross over is the constipation and bouts of really urgent needs for the loo (though even those have often co-incided with period when she has been on anti-biotics ... though that raises the issue of frequent infections). She's starting to show distinct signs of the marbles going which is the thing that is really concerning me - you can have the same conversation a few times in short succession, her powers of comprehension are waning and my brother reported the last time she was there that she came out with 'where does coal come from?'.
I've given her a nasal spray but I'm not sure she will remember to use it - just in case that shows some improvement on the mental side - or even on the physical side as her balance is really poor, she's tired all the time and ... again those could all be explained by diabetic neuropathy. Trying to get her to make an appointment and deal with the doctor on this one is a bit beyond me - hence the nudge towards try it and see.
Anyway, that's part of the reason for advising not to be totally resistant to investigating MS - if the medics were more open to investigating other possibilities rather than just assuming there is one causal factor involved then I wouldn't be worrying so much about my mother.
Just a suggestion - but have you thought about buying your sister a book on B12 and leaving her to read it and make up her own mind? A few months ago I leant a book to a colleague at work who was amazed by just how much fitted with what she was going through ... but unfortunately things have now stalled as GP won't listen.
I was amazed by my brother last time I saw him as I was totally expecting him to be against the idea of looking at B12 - he's a bit of a head in the sand man when it comes to illnesses ... and he's the one that has inherited the diabetes gene but refused to be tested - but developed the diabetes when he was 45 ... whereas I was tested (as part of a university study) and found out that I didn't inherit that gene. He was actually quite enthusiastic about trying a nasal spray to see how it went (had so many problems getting his GP to recognise that he didn't have bog standard diabetes and needed a different drug regime that I don't think he'd feel like going through trying to get tested). That was partly because he overheard someone (in a restaurant I think) talking about how much their B12 maintenance shot had affected their ability to work that day.
Mmmm yeah I see what you mean poppet, and I'm only just beginning to realise how complicated the whole area is even after all the research I've been doing and its like anything in life if its thrown at you your likely to run in the opposite direction from it.
Sorry Gambit that you are having worries about health for your mum, my mum is also unwell with bad fatigue low mood just been back to her drs for bloods- crumbs its not a wonder that sometimes it all becomes a bit all consuming. You are right though when you get a diagnoses its easy to put symptoms exclusively down to that one thing when chances are it could easily be more than one thing. I had Graves disease 10yrs ago and was told by the endo. to keep an eye out for hypothyroid in the future so I do keep aclose eye on that as well, when the dr lets me (just basic tsh tests) - sound like a right hypo lol.
I have recently bought Martyns book and have the Could it be b12 one so I will lend to my sister and she can ponder over the info and see what she thinks in her own time.
Im interested to know how the spray works for your brother, did you say you find it works well for you?
Thanks, if my returning info from GP is not too quick or not what I need I will defo give the spray a try. Today is almost a week since my last injection and I feel really human today, the spring in my step is back and breathing more easily no headache or muzzy head even tho I had broken sleep last night (due to external issues not health) and an early start! Absolutely convinced its all b12 related. Glad the spray works well for you, I will carry on with my methylcolalamin lozenges for now and see.
I'm starting to get the chicken and egg feeling over the diabetes. I know nothing about the illness expect to say that I heard experts talking on the net a few months ago and they were saying how diabetics have a malabsorption problem. They actually have a lot of sugar in their system but literally can't absorb it.
Sounded too familiar to me.
I also hear a lot about diabetics having similar symptoms to us and I've seen it with my own eyes.
If it makes you feel differently Gambit I never had any constipation and then an urgent need. I don't think it is applicable to everyone.
I'm with you in trying to get some b12 into your mum just to see if it improves things - but like you say, how to do it and make sure she gets it regularly.
I think trying to pass the message on depends on who you are trying to pass it to. I tried giving the book Could it Be B12 to my family and got nowhere. They believed they knew about the illness - end of story.
Others might be more open minded. I guess it's usually the people who you expect to be least responsive who end up being the most.
There are different forms of diabetes - at least 3 that I am aware of - Type1, type2 and MODY, so diabetes is probably more accurately described as a disease that occurs because the body is no longer able to convert sugars to fat ... and think that in some forms the reverse is also true. The chemical that is missing in this context is insulin, which is normally made in the pancreas. Each type of diabetes has it's own factors that affect the problem and respond differently to different interventions/drugs. Unlike B12, too much insulin is as much of a problem as too little.
Type 1 and MODY are the result of specific genes and if you have the gene you will develop diabetes, whereas type 2 seems to be the result of genes that give you a tendency to develop diabetes in particular situations - the system shutting down in response to too much sugar in your diet being the biggy. It may turn out that there are as many different forms of diabetes as there are genes involved. Don't know what the state of research is on any genetic connections with B12D but wouldn't be at all surprised if at the end of the day it turned out that there are many different versions of the condition and that contributes to the wide range of symptoms, different responses to treatment, and different progressions of the disease.
But where the hell are all these illnesses coming from!!!!!
Okay, I'm getting on a bit now, but I'm not ancient. Twenty years ago I knew 1 person with diabetes. Now they are on every street corner. I don't think we had a kid at school with asthema (can't spell) now every other kid has an inhaler. Who had a dairy intolerance (bearing in mind we got free milk at school and I'd think we'd have noticed) Who had IBS, gluten intolerance, peanut allergies? Did everything go nuts in the 1980s? HIV, chronic fatigue, every auto immune condition going, dementia (I'm sure there are a lot more but I've got a lousy memory - From the mid 80s onwards the world went beserk.
Thanks for the summation about diabetes. I don't know whose got what anymore. I do know I could drum up enough folk for a substantial dinner party who've got one type or another though.
Type 2 diabetes epidemic (word used by health organisations) is caused by diet.
Some evidence that asthma is actually caused by people insulating themselves from the world, eg living in large cities and not having contact with various micro-organisms - same for a lot of the other intolerances.
Thank you for your reply. I'm an RN and understand the meaning of those terms, and that's why I asked you for a source. Because so often the terms are used carelessly by websites which call themselves "health organizations."
Interestingly this article from American Diabetes Association publication used the term in 1999! If my darn computer will agree to it I'm going to post the reference in next post.
I read recently new research showing that artificial sweetners could be having an impact on the way the body metabolises sugars and could potentially be part of the obesity problem, I know I only view body chemistry at a basic level as when I was at school girls didnt do science! Well not quite that bad but as a pure lay person I just think its obvious that man made chemicals whether in the food chain or absorbed or breathed in, coupled with generally bad diet since the late 70s is at some point going to be having an adverse effect. Oh yes and of course there is the overuse of antibiotics without the use of probiotics ( I understand that in Germany all drs that prescribe antibiotics have to also prescribe probiotics to replace the good bacteria) I didnt even realise until recently that the immune system starts with the good bacteria in our stomachs so if we mess that up stastically some of us are going to pay the price. As you say these auto immune diseases and illnesses seemed to have multiplied 10fold in the last few decades. You have to even wonder if thats part of the problem with some people having had their lntrinsic factor destroyed by antibodies? Who knows, hopefully research will start finding some answers and the food industry might make some changes....I wonder.....
Just looking at the comments and taking a brisk run through them:
Diet and obesity - not all cultures are obsese, even in europe. Obesity is caused, in the main, by over indulging in food and drink and not getting enough exercise. Alcohol is rarely brought into the equation, yet most people indulge very frequently and not in moderation really. Everybody goes on diets, rarely do people stop drinking.
Throwing the word 'diet' at it ends up where we find ourselves in a world where everyone with diabetes is presumed to have a bad diet. I remember when I first started going to docs with b12 problems (I didn't know it was b12 then) every single doctor asked me if I was getting enough exercise. Ridiculous - I could have worked all of them into the ground on any day of the week. They didn't know what real exercise was. But it becomes something they say.
A dangerous situation. The presumption that we are all laid on a sofa clutching a remote control.
Asthma being caused by not coming into contact with other micro-organisms? Surely the first illness to take hold in that scenario would be gut problems - of the serious variety. I've seen this in city children who move to the countryside and suddenly come into contact with muck of all varieties. They have little or no immunity. But they do not get asthma first.
Even when it comes to antibodies there are interesting issues. I know there have been several studies done relating to IFAs and corticosteriods. I don't know the end outcome though. But what I can say is that if patients are given corticosteriods their parietal cells start releasing IF and acid, and their antibodies disappear and everything functions as normal, if only for a while?
So you have a situation where they are saying that PA is caused by gastric atrophy and the PCs aren't releasing IF - yet it is reversible. And you get situations saying IFAs are present and someone can't absorb b12 but that is also reversible.
I'm with jsteg - I think it's the food. I think doctors and scientists have lost sight of the basics. They all spend far too much time in the lab or consulting room and have lost contact with reality. The probiotics thing is typical. I know, and have known for a long time that if you give antibiotics you also give a good bacteria. I know this because I deal with ruminents and they can't live without their good bugs even if you are in a situation where you have to get rid of the overload of bad - but how many doctors in the UK do it? You get a prescription for antibiotics and you pick up a good live yogurt first.
I'm not saying that a lot of urban people eat properly and get enough exercise, they need to smarten up - what I am saying is that in no way is it possible for what they do or don't do to cause all these potentially life threatening conditions.
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