Right, so acute medical consultant wrote to GP 2 weeks ago to advise a course of b12 injections which is what I've wanted since the beginning of the year which is great. The letter hasn't arrived yet tho. My full spinal MRI cane back clear apart from some osteoarthritis in my neck which he claims could be responsible for my symptoms (nah) but he agreed to try b12. My initial bloods came back as 237 back in Feb, today saw gp who told me that my levels are now off the chart (over 2000) so no point in injections... I have been taking 15000 mcgs of Jarrow sublingual b12 a day for months and I am def getting better but so bloody slowly. He says it's not b12 as with levels at 2000 plus I should be cured but that he's not an expert. He said people with b12def see their symptoms disappear after one injection... I asked if even tho my levels are now high could it be possible that it will just take time to get better and repair damage he was all 'erm, no not really'. I said no way am I going to just go home and shut up about it all even if it's not b12 and he says he's going to wait to receive letter from consultant and then refer me to see a neurologist. What do you guys think? Should I just be patient and wait to see if I continue to heal? Should I cut down on expensive b12 supplements and just top up with one tab daily? Feeling lost again. Oh, and I'm trying to go gluten free.
Thanks in advance lovely people!
Written by
goldlion
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At least your GP recognises that he isn't an expert!
It isn't the level of B12 in your blood that is the important thing - A B12 deficiency is NOT a blood disorder - though left untreated it will result in blood disorders - People can be deficient at the cell level even if they have plenty of B12 in their blood - or even very high levels in their blood - it's called 'functional B12 deficiency.
Although it is possible that someone might be cured of their symptoms after one shot I suspect that is rare. How long it takes for symptoms to recede is going to depend on the individual - what their metabolism is like - and also what symptoms they had. One shot of B12 might be enough to correct mild macrocytosis (one symptom of B12 deficiency) but as that is caused by deformed red blood cells and it takes a month or so for the body to replace red blood cells as they come to the end of their life - that is going to take at least a month to disappear.
If the problem is an absorption problem then that will mean that you also have a problem with storing and recycling B12 as the process relies upon releasing B12 that has been stored in the liver into the ileum for re-absorption and an absorption problem means that this is going to be inefficient at best - hence the need for top ups for life.
Sublinguals can be a very efficent way of getting B12 into your blood stream for some people - it aims to work by the B12 being absorbed through membranes in the mouth rather than in the gut. Even if it isn't the doses you are taking could be sufficient to resolve the problem as some people can make use of the 1% of absorption that happens outside the ileum.
Sublinguals won't be as efficient as injections in getting B12 into you so injections might be quicker ...
And despite what your GP has told you many people do see slow improvement and it can take months. It isn't uncommon for people not to notice much difference for several months. And it isn't uncommon for things (eg aches and pains) to get worse before they get better.
Suggest that you get hold of one of Martyn Hoopers books and give it to your GP - won't make him an expert but might help to make him a lot less of an inexpert than he currently is.
Thank you, for your reply, I'm so confused about it all tbh! Do you think I need to keep taking the high dose of sublingual b12 or could I cut down now my blood levels are super high?
personally if you are still noticing an improvement I would continue with the high dose - you could try reducing but if the symptoms start coming back then go back to the dose you are using.
If there is any chance that you might be sent for gastro appt dont go gluten free yet.
I have been gf for almost 2 months now after my gastroscopy and i would say that it hasnt altered that much where my symptoms are concerned. Less bloating but burning and tremors still with me.
Hi goldlion any doctor worth his salt would know that the serum B12 test is meaningless after supplementation starts.
You wrote "My initial bloods came back as 237 back in Feb, today saw gp who told me that my levels are now off the chart (over 2000) so no point in injections.."
At 237 you were definitely on the low side as it says on page 11 of "Could it be B12?" (Sally Pacholok & Jeffrey Stuart) under the heading "Types of tests for B12 Deficiency"
"We believe that the "normal" serum threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebral spinal fluid (CSF) below 550 pg/ml
At this time we believe normal serum B12 levels should be greater than 550pg/ml. For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1,000 pg/ml
We commonly see patients with clinical signs of b12 deficiency who are not being tested. Others who are being tested are not being treated because their serum B12 falls in the grey zone. This error results in delayed diagnosis and an increased incidence of injury".
Your high level "now off the chart (over 2000)" is totally irrelevant
False normal B12 results and the risk of neurological damage (U.K. N.E.Q.A.S Haematics.org.uk)
“In the event of any discordance between clinical findings of B12 deficiency and a normal B12 laboratory result, then treatment should not be delayed. Clinical findings might include possible pernicious anaemia or neuropathy including subacute combined degeneration of the cord. We recommend storing serum for further analysis including MMA, or holotranscobalamin and intrinsic factor antibody analysis, and treating the patient immediately with parenteral B12 treatment.”
What that is saying is - if you are still presenting symptoms of B12 Deficiency despite taking your supplements your doctor should be treating them regardless of your high test level.
Perhaps you could suggest a trial period with B12 injections to see if the symptoms improve.
Do you have any idea why you B12 level was so low back in February?
I've been vegetarian for 28 years! Since childhood. Plus I've had long periods with very little diary intake. Also there is a possibility I may be coeliac tho I pulled out of testing as it was too stressful for me right now as I haven't eaten bread or much wheat for many years and having to do so for the test was making me feel awful. I don't know what to think any more tho!
I did ask for trial and he said he had no clue what to do, how often, how long for etc.
I'm exactly the same as you goldlion, doing the same thing, I seem to be going round in circles, and have this same pain when I eat like burning, I'm gf and if I eat something I shouldn't it last for days, I'm thinking of seeing a b12 specialist at a hospital private, because gp says my levels are now fine, I was taking Jarrow 1000iu levels were 223 now 665! I need help too!
It's so hard, I'm having more good days now and the tinnitus is lessening and I get all excited and then it all comes crashing down and I'm in a world of twitches, tinnitus and wooden legs again!
Some weeks ago I merrily did a post that at last a lovely Psychiatrist backed me and wrote to my GP about a Neurologist, for which I have been fighting for years. I was thrilled. My GP did so happily. The Neurologist wrote back that he was not really interested as the basic gist of the letter, my last blood test showed 1075 as my levels. He more or less said if myself and my GP really insisted he would see me! That sounds doomed from the start. A friend diagnosed just over a year ago saw the local Neurologist (must be the same chap as we are The Isle of Wight and choices limited), he said yes you have a B12 problem, that was it! My own GP knows I am still feeling so unwell, injections every six weeks, take about 6 days to start feeling better and can do things more, the last two weeks prior to injections get gradually worse and feel as bad as at the start. Had PA for about 12 years now. GP said perhaps a good idea to try 3 injections a week, see how I get along, and did a memo to the secretaries to arrange. A week ago, not heard since. Like most GP practices they are ultra busy, he works week ends, over and above the opening hours and the Nurses have long term sick, sick and cannot keep up. Like getting gold to get an appt with a Nurse, GP is about 6 weeks. He has been very sweet lately, I think he does believe in me and has looked at some of the info I have sent him. He wishes there was an expert on the Island he could refer patients to. How can I get in touch with Martyn Hooper, I think my GP would be really glad to hear from him, he is so open to some help not just for me but for the number of PA sufferers he knows there are now here. Although I said to still have the Neurologist might well thump him if he tells me a lot of rubbish. I have had memory problems getting so bad as I get older (61) that I have been tested for Dementia and had a brain scan. The Scan showed I did not have actual Dementia but having read thoroughly at my behest into PA/B12 it was the Psychiatrist who recognised how serious this is and offered his backing. If I see a Neurologist who is only going to say yep I have B12/PA without looking into treatment for my memory I am going backwards again. I am so low, despressed, not sleeping and feeling poorly, fed up to the back teeth with forgetting names, birthdays, appointments, what I did that morning let alone the day before. I cannot hear this continued rejection, patting on the head as though I am bonkers. I feel my only hope is really with Martyn Hooper, can't quite afford his book right now, and to be fair my poor GP is dealing with so much he would not have time to read books. He would love to attend a conference but it is out of the question with his case load, my mental health department locally is totally overloaded, I am seen by my usual Psychiatrist twice a year in a very quick appt for which he always apologises. My social care worker (taken 3 years to replace my Social Worker from the Mental Health after he left) can give me one hour a week (She has been changed to another one after only 5 weeks in order for them to consolidate their work into sections, who calls me the wrong name all the time and sends me a text at the week ends of when my next appointment will be. She wants to sit at the table, obviously had not read my notes and really does not want to stop any longer than she can, looking at her watch as soon as we talk. I know they are overloaded, I was so glad to get someone, I realise I will have to voice and reiterate everything but it is not easy when you are feeling half potty and not wanting to lose that contact. I have signed every petition on PA/B12 that has been anywhere online, sadly so many do not know of this site or do not know about basic computing so there must be 1,000'S out there with no idea why they are so ill. I am going to try myMP, Andrew Turner as well just for good measure adding him to the list of people I am pestering on such a regular basis. I wish you good luck with the injections, I worry in the same way that they will be for how long, is my GP thinking doing the "Load" injections will cure me, or will it be kept up until I remember the day of the week, what I did this morning or last night? I will google Martyn Hooper, I cannot find the right bit on this site to get in touch, I have before but my little brain isn't being exactly helpfull in weaving itself through anything on sites right now. Keep on, and on, and on, it is the only way, this site is a life saver with so many of us we will get things done one day, recognition and a GP in every surgery must know of the depths of this condition. If not the GP a Senior Nurse at least. The help by sharing of this site must be second to none, so much sensible and educated advice and so much warmth from everyone keeps my spirits up. Do keep in touch with the site members, we are like a huge family helping each other, it keeps you strong and a reason to go on knowing so many like minded sufferers are behind each and every one of us. Hoorah for the Pernicious Anaemia Society and everyone on it, without you all I would have given up. Marcelle
The telephone number for Martyn Hooper is 01656 769717. Open mon - fri 8:00 til 14:00.
Please don't give up. I really understand your frustration.
I think more frequent injections could help you. You should be on alternate day injections till you stop improving. Could you get your GP to teach you to self inject - that could be a good way forward for you.
If you pm me your address I'll send you a copy of Martyn's book :). x
That sounds awful Marcelle. I can't believe there are so many of us not getting the help and understanding we need. I feel like 'they' just expect me to go away now that they've ruled out MS and the 'serious stuff' as they say. It sounds like you're a fighter tho so keep it up!! Sorry for slow reply.
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GP visit! 
B12 levels 6 months after loading injections
Update following GP appointment. 1 Month down the line.
Confused...
High b12 & elevated liver enzymes
