I am due to see my GP on Monday afternoon and require some advice in order to ensure she will not use my latest B12 blood result to stop prescribing B12 ampoules.
Have self-injected B12 for approximately 16 months. Used to be 3 times per week for nearly one year. Then stopped for a few weeks but symptoms came back so decided to SI once per week., with GP's advice.
When I saw GP last month to request several blood tests she sneakily added B12... which I did not request! I did tell her a while ago it was pointless to test level of B12 once injecting as level would be high... but she has nevertheless requested the test.
transferrin saturation index: 15% (20 - 40) BELOW RANGE
FULL BLOOD COUNT:
White blood cells: 8.69 10*9/L (4 - 10)
Red blood cells: 4.71 10*12/L (3.8 - 4.8)
Haemoglobin concentration: 122 g/L (120 - 150)
Haematocrit: 0.392 (0.360 - 0.460)
Mean cell volume: 83.2 fL (83 - 101)
Mean cell haemoglobin level: 25.9 pg (27 - 32) BELOW RANGE
Mean cell haemoglobin concentration: 311 g/L (315 - 345) BELOW RANGE
Platelet count: 340 10*9/L (150 400)
I feel very weak, NO energy at all... incredible fatigue plus unable to lead a "normal" functional life. It makes me feel like I am in my late 80s.... rather than being 72. yet was very active until about 3/4 years ago. This is worrying and scary.
I would appreciate your comments and how best to stop my GP from refusing further prescription of B12 ampoules for SI. She has seen the difference it has made, but.... haematoligists have tried very hard to stop me from using B12 when in fact I did not go and see haematologists regarding B12... spending most of the time trying to make me stop using B12 and did not address the problem I went to see them about!
Interestingly, the gastro did write in a letter to GP last year that I should carry on injecting B12... as I have reactive gastritis and GERD and have been taking PPIs (proton pump inhibitors) for well over 2 decades... so no doubt have problems with absorption of nutrients and minerals although I do my very best to have as good and nutritious a diet as possible.
I have posted more results on the Thyroid Forum too as I am hypothyroid as well as having rheumatoid arthritis, Sjogren's etc... So you might find it useful to check my post on thyroid forum too.
Need to ask: Is it dangerous to have a very high level of B12? I understand it is not toxic, being a water soluble vitamin.
Have seen great improvement after starting B12 injections but still get pins and needles in fingers and this seems to have increased a little (not all the time though). Is this normal when injecting B12?
I have read in the past it is important to have the diagnosis of B12 deficiency acknowledged and recorded in one's medical notes. I can understand the reason behind this. The problem is no one seems to give such a diagnosis... Am seeing the gastro again in 2 weeks so how could I ask him for an official diagnosis for B12 deficiency? He has diagnosed me with reactive gastritis and GERDS - have had acid reflux for decades - have recently had gastroscopy and colonoscory (pain and losing weight, slowly but consistently even while having a good diet. Have hiatus hernia, polyp in stomach, now a nodule at oesophageal/stomach junction and diverticulas in intestine. Gastro said I did not have PA (negative for Parietal cells, etc... although i understand this is not a foolprof test!).
So many thanks to those of you who will be kind to advise me.
Best wishes.
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JGBH
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I'm no expert but it seems likely in view of your gastric problems that you're maybe not absorbing B12 and other nutrients and this article first posted by 'Diogenes', advisor to TUK, may help convince your GP as to why you need to continue receiving ampules for adequate treatment:
"The natural history of HT is the progressive reduction of thyroid function till overt hypothyroidism (24) with a rate of progression of 2–4% per year (23), while that of gastric atrophy features the progressive reduction, till disappearance, of parietal cells, leading to reduced or absent acid production (3, 22). These alterations interfere with absorption of essential nutrients leading, at first, to iron-deficient anemia, followed by PA if the self-injurious process involves the IFA (13). "
............
Re. blood tests, the latest BMJ research document summary below demonstrates the uselessness of testing after treatment as do other guidelines so, hopefully GP will probably be able to access and read the full document (behind a paywall). At the bottom of page 4 ' under, 'How is Response to treatment assessed'), it outlines that, once treatment is given, blood levels will inevitably increase but it is the clinical condition of the patient that is important:
"Cobalamin and holotranscobalamin levels are not helpful because they increase with vitamin B12 influx regardless of the effectiveness of treatment, and retesting is not usually required."
Polaris, thank you so much for the 2 links. It should help me when I see the GP...
However she is presistent in saying I do not have anaemia.... So did the gastro, saying I have iron deficiency (but not iron deficiency anaemia!). He also said that I do not have gastric atrophy.... so quite difficult to make then see sense and accept reality.
Not sure what the outcome will be.... But a big thank you for your support.
I'm so sorry JGBH but you seem to be dealing with medics who are splitting hairs and haven't read up on PA/B12def. at all as having this, and other deficiencies, without anaemia is just another well known misconception - No. 2 on the Dutch link above.
Go sock it to them - maybe in writing so it's on record and you can't be fobbed off 🤗
I have already given many photocopied links to GP added to my letters when I first had to fight in order to get the B12 prescription.... it should be in my medical records.... but really wonder! It took nearly one year of letter writting with evidence of research papers added for me to get B12. She told me she had had a tough time to prescribe the B12 although I did not have B12 deficiency! No doubt it came from the CCG who do not want GPs to spend any money on patients treatment or referral to consultants. I read an article from the Patients Association that the CCG for my surgery (North West Leicestershire) is actually offering bonuses to surgeries who do not treat patients nor refer them to specialists! Indeed I had to see many specialists privately.... This is appalling! I wonder how many CCGs do this. It makes one feel so vulnerable and scared.
I have told GP I refused to be fobbed off.... she replies that she did not make the rules! Great medical service! Despair....
I do understand as had exactly the same intransigence from my sister's surgery and it is criminal the way B12 is withheld, which was why I decided to SI. This is why:
David Smith, Professor Emeritus of Pharmacology at Oxford University:
‘B12 deficiency is more common after the age of 60 and, once levels fall below 500 pg/ml (picograms per millilitre — the normal range being 500 to 1,000), the brain starts to deteriorate at twice the usual rate, making memory loss six times more likely,’ he says.
Pernicious anaemia is also linked to tinnitus (affecting seven out of ten sufferers), the skin conditions rosacea, vitiligo and psoriasis — it may even be linked to multiple sclerosis, thyroid disease, rheumatoid arthritis and psychosis, says Dr Chandy.
‘Unfortunately, too few doctors are aware of this or that treatment is cheap, easy and free of side-effects, with robust clinical evidence for its efficacy.’
Many people are not being diagnosed — and, when they are, they are failing to get the treatment they need, adds Professor Smith.
‘NHS guidelines insist B12 deficiency be identified by one of two possible blood tests — both of which are unreliable.
‘One test looks for macrocytic (enlarged) blood cells, which can be a sign of deficiency. The other measures the total amount of B12 in the blood. But you can be B12 deficient and sail through these tests.
‘GPs need to look for symptoms that suggest B12 deficiency — then see if these improve with B12 treatment. '
"it should be in my medical records.... but really wonder! "
Have you considered getting a complete set of medical records? You could ask for access to paper files as online summary is only a summary. I used to refer to letters I had written in appts and the GP then had to look them up on their screen therefore proving they has been filed.
There is a PAS support group in Leicestershire. Some PAS members do not have a diagnosis of PA. They have a meeting soon, see thread below. PAS support meetings are only open to PAS members so you would need to be a member to attend.
"I read an article from the Patients Association that the CCG for my surgery.....is actually offering bonuses to surgeries who do not treat patients nor refer them to specialists!"
Many thanks for all the useful information. I have already got a copy of all my medical notes from surgery but this was before I wrote to GP including photocopies of various research papers, etc. over a year ago.
Writing to my MP regarding the cavalier attitude of CCG is an excellent idea.
I will do my best to "fight my corner" as usual when seeing GP... but it's exhausting, more so when feeling unwell.
Thanks again to you and all who so kindly replied.
Yesterday, JGBH, I went with my daughter, her husband and my 21 year old grandson to take him to Manchester to log in to the hotel near where he is starting his very first real job after graduating - a momentous day. It was also a beautiful day, sunny, not a cloud in the sky and hot, and Salford Quays was delightful. So why have iIwaffled on about this, well for the reason that it was marred for me by electric shock pains and tingling in my fingers, plus my feet were burning and twitching, all day. They are all fine today because before I went to bed, after a dreadful evening when I wanted to chop my feet off, I gave myself another shot of hydroxocobalamin. I shouldn't have needed one as I had only done the last 3 days before, but there are two things I find I can do when the tingling, the electric shocks, the sore mouth the tinnitus, the burning and sore feet return, you can put up with it or you can self inject. As the SI costs about 70pence, and takes less that 5 minutes from getting the kit out and clearing up, I know which route I go down.
It is 12 months now since I discussed with our young GP reducing my 3 monthly injection gap down to 1 month as that was about the time when the 'other symptoms' appeared. I gave him all the links to the PAS website and he duly read up on it and we discussed it again. He agrees he, like his colleagues, knows a little about a lot but doesn't know much about anything and B12 deficiency, e.g. Pernicious Anaemia is one of them. He also agreed he thought I was correct in what I wanted to do, but because the licence for use of hydroxocobalamin says 12 weeks, unless a consultant agrees, he cannot assist me with more supplies. The haematologist he consulted wants me to stop having injections for 6 months so they can do the blood tests again to prove I actually have the problem. (My reply began with B, ended with S and had an F and a K attached. ) I get my supplies via our good friends in Germany and to hell with the Quack.
I have to admit I don't have much faith in the GP's. Over the past 40 years they have been so very wrong in the diagnosis and advice I tend to research for myself and go armed with the necessary information, if they don't like it or give a wrong diagnosis then I don't see that one ever again. They are our servants not our masters. I am arrogant enough the know my brain, even at 73, is much better than theirs, I have just learned different things. In the past 25 years their mistakes have cost me a small fortune, well over £250K, they ain't my, favourite people. When it comes to me, just like when it comes to you, there is no greater expert on this planet then me for me and you for you.
Thanks for your comments... I agree with many statements you made. However, having a complex medical history I still need to be "careful" about how I handle the doctors.... They are the first referring point... so intelligent caution is required. My faith in doctors has been chattered quite a long time ago. They are unable and unwilling to make a diagnosis... protecting their backs all the time at the expense of the poor patients who suffer so much.
I am sorry your day was spoilt by health issues yesterday... such a very special day to be very proud of. Do hope your grandson will make a great start in his career, and that you will be able to keep your problems under control.
I'd be (repeatedly if necessary!!) concentrating your GPs attention towards your multiple low iron results. You are iron deficient bordering having iron deficiency anaemia from what I can tell (I'm not a medic). What are they doing to improve this? Iron tablets?
You don't have to actually have iron deficiency anaemia to have symptoms. They can occur with iron deficiency too - and many overlap with those of PA. I get tinnitus, breathless, feel atrocious with no energy / feel like I need to sleep the day away if my ferritin levels drop. My iron panel / FBC has never shown iron deficiency anaemia but if my iron levels drop too low (even while still in range) I get symptoms. My GP has me on ferrous fumerate tablets which I suspect I'll be on for life as whenever we lower the dose my levels drop again and my symptoms return. Being on PPIs will obviously lower stomach acid production. Unfortunately means it is harder to absorb non-haem iron (ie from veg based iron souces) which makes it harder to get your iron daily intake.
If they are being difficult about B12 I'd point that you don't want to risk lowering your B12 dose until you are completely sure your symptoms are caused by other things.
You are quite right. I have consistently questioned the GP and haematologists and they consistently say I do not have an iron deficiency anaemia because my Ferritin is ok... good iron stores! As you can see I can't win in finding a way forward. I think I have a problem with iron transport... but how to make those people "see" that and focus their mind on doing their best to find the cause rather than using the easy excuse that I have a complex medical history, have chronic autoimmune diseases... Yes, while that is true it should not prevent them from trying to help me having a better quality of life.
The fact my FT3 is below range is not helping.... Of course GP said there was nothing she could do about that!
Thank you for your reply. I was diagnosed with iron deficiency by gastro over a year ago. I have microcytosis (small size red blood cells)... Have been taking Ferrous fumarate for quite a long time. It helped a little to begin with then my iron levels kept dropping down and in fact I had to stop having iron tablets, cannot tolerate iron therapy,it made me feel so very very ill, so much pain in stomach (have reactive gastritis, take PPIs) and in abdomen. So iron tablets are out of the question now.
Am afraid GP is not bothered about anything.... I have to push all the time and request being referred, it never seems to occur to her! They are all the same in the surgery!
She did not mention the B12, so am still injecting. These were prescribed, after a long fight, by GP and gastro said I must carry on injected B12...
However, the haematoligists always want me to stop using B12.. how strange! While they do not propose to do anything else to help me. Am hoping an iron infusion might help, but doubt they will agree to that, the other 2 haematos I've seen did not want to.... Meanwhile I am feeling worse. Not sure how I will be able to get any much needed help....
Have you asked GP for RDW result? Will GP request a blood film aka blood smear. This should show if there is microcytosis (or macrocytosis) in red blood cells. Possible to get these tests privately in UK if GP unwilling.
It's possible that if there is iron deficiency causing microcytosis it may be masking effects of B12 deficiency. B12 deficiency and folate deficiency can lead to macrocytosis (enlarged red blood cells).
I hope GP will keep monitoring your blood results.
Thank you so much for the very interesting links. Would it not be fantastic if GPs read these.... they would be learning a great deal and might be able to really help us! Wishful thinking!
When I asked my GP yesterday if she had seen/heard about the debate in the Lords re: T3.... she said no! Did not even seem bothered to ask, not interested but told me she was going on holiday....
Am seeing the gastro again in 2 weeks so the information from links will help me to have a better consultation, I hope.
Yes I did have a blood smear done last year and my RBCs are microcytic: the gastro actually told me I had microcytosis, NOT the GP, she did not make any comment when I told her my RBCs were smaller than normal... She obviously did not have a clue and kept saying "what do you expect you have rheumatoid arthritis, etc... ", in fact any excuse for not pushing the investigation further, although I keep returning to see her and demand help in getting better. Have asked her to refer me to haematologist again.... she said they would not do anything about my low haemoglobin, low iron despite my symptoms of extreme fatigue, no energy, dizziness and being unable to function properly! I keep on pushing for more investigations but it's demoralising when one hits a brick wall time and again....
Regarding the B12 she made no comment as I reiterated that it was pointless testing for B12 when one is injecting... she nodded, for the form I think. However, I think she purposely requested the B12 test because I asked her to refer me again to haematology and she perhaps hope once more haematologist will say I should stop injecting B12.... that's what they did on the 2 occasions before. They spent most of their time trying to get me off B12 and ignored the problem I came to see them about.... Yes indeed! However, I will seek the support from the gastro who actually wrote to GP last year to tell her I need to carry on using B12. WHY is it nearly impossible to get any treatment? It is obvious they do not want to help you if you are old (well over 65) and have a complex medical history.
I did tell GP that they must not use the poor excuse that I have a complex medical history to let me suffer more, getting worse to justify their case. That because of this I need help in getting at least a little better. Was just wondering whether I would beneficiate from an iron infusion.
As for GP carrying on monitoring my blood tests, she will BUT she does not do anything else once the results come through.... It's all left to me to keep on pushing for help, demanding to be referred, etc. She clearly is unable to do her job. What is obvious is that she must deal in the same way with most patients but they must accept her rubbish attitude and she gets away with it. I must be seen as the most difficult pushy patient of the practice. No point in seeing another GP at the practice because they all operate in exactly the same way. Sorry this is a bit long...
Re "It is obvious they do not want to help you if you are old".....
Not sure when "old" kicks in these days, but I was 57 when I first went to GP and am now 60. If you wait long enough, you'll be old enough to qualify for "not worth saving" ! Perhaps that is the plan.
Anyone else sick of hearing an "ageing population" being blamed for almost everything lately ? Are "devil-dogs" and "gymslip mums" (just two of the scapegoats from previous decades) now officially off the hook?
I am not so sure you are correct Cherylclaire, I am 73, but I have a somewhat dependent 'cousin by marriage if there is such a thing' who is 91 and he is being looked after very well by our surgery. He has had a number of falls over the past few years which have resulted in him being hospitalised and although they don't know what has been causing them they have made herculean efforts to find out. (I am certain it is old age, but they are looking for something else) He is aiming for his telegram when he is 90, I am not sure I will be around when he gets it, he might have worn me out. He can always get an appointment to see a GP so perhaps those of us who can't are just not old enough yet to qualify for 'special treatment'.
You are right of course -I was just off on a rant.
My GP has referred me to many many people and told me that she would not give up. She has also taken excellent care of my mum.
Surprisingly, B12 does not seem to be anyone's area of expertise- a neurologist even admitted his lack of knowledge to me and suggested in his report that I might have pelagra (!!), a haematologist said that my cognitive and memory problems were most likely due to starving my brain of oxygen as an ex-smoker (!!), another one said that B12 was highly addictive and toxic (!!) but never managed to produce the research although I asked 3 times. You can see why Sleepybunny confesses to having become "quite cynical".
Ending on a positive, a senior ENT consultant looked at my tongue and said "this is clearly a B12 deficiency"..... and told me to carry on self-injecting, that I was doing the right thing and not to give up. He told me that it would take a long time. That was the voice of experience talking.
I took photos along with me, so that he could see that this was an all-day everyday thing, but tongue wide and always has thick white coating, with red hot stinging raw-looking edges, sometimes scalloped (pie-crust) and back of throat also deep red raw-looking with swollen red uvula .... this is probably what he was referring to, although gums bleed and teeth not great either now. I'm imagining that in his long profession, he has seen enough of the insides of peoples' mouths to have taken all the risk out of guesswork.
Think Pelagra suggestion from neurologist was a bit of a shot in the dark, though, and really rare condition here I think. Will look at your link though.
As for the haematologists, they referred me on to the neurologist because of tingling in hands and legs and cognitive/behavioral/memory problems , also to another department to have Lactulose breath test for SIBO because of daily diarrhoea and raised MMA..... so they were looking for answers, but not willing to make it B12-related as homocysteine levels "normal".
Of course bias plays a part in treatment and testing if you believe B12 to be dangerous despite ALL the evidence to the contrary. Tried my best, Sleepybunny, but was quite ill at the time and found them really inflexible on this issue. Showed them the Talbot and Taylor research on Functional B12 Deficiency and was told to "look at the date" (2009, I believe it was) - as far as I'm aware, this has not been superseded by any research since. Research concluding that frequent B12 injections are the answer is never going to be popular, is it ?
PS: So far, I seem to be proving them right, in that although I am improving gradually on one injection every other day, if I feel okay and leave it an extra day, I get noticeably worse again. Similar regression if I have a busy couple of days. Still keeping detailed records, in case either Talbot or Taylor wish to get in touch !
Unfortunately they are not willing to learn, to accept people improve many of their symptoms with B12 injections.... entranched in their ways... very difficult for suffering patients.
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