My level was 170 I have pain, confusion and afraid to drive as I hit the post on our fence, I forget everything, exhausted, walk into things and my hands don’t work I drop everything. Hospital said they will write to gp and I need 3 injections a week for 2 weeks, then monthly then 3 monthly and I don’t need to see the hospital for it. They did a follow up test and I got level up to 211 I think. Anyway weeks passed and I heard nothing from my doctor so called them about it. They say hospital requested follow up tests and they gp will then decide, to which I said I had already had follow up test.
They checked results and said at 211 I’m fine and don’t need injections and to be honest (I quote) “ it’s a faf on”.
What do I do?
I can’t buy my own and inject myself as I can’t use my hands well. For years they just told me I have fibromyalgia and the pain tiredness and numb limbs are down to my rheumatoid arthritis. B12 deficiency explains all my problems. But doctor rather fill me with morphine, tramadol, dehydrocodine, codine phosphate and gabapentin and everything is just side effects and down to arthritis.
I have polycythemia so my blood count is always high. They say they think auto immune disease caused it and they think immune system attacked stomach hence poor absorption. I’m on immune system surpressing treatment because it caused the arthritis and has previously attacked organs. However the gp on the phone tried blaming me not eating. Yikes I’m 5foot and over 11 stone so I’m pretty sure I’m not starving. I have hypoglycaemia so it’s curtains if I let blood sugar drop and I did all the diatician crap and food record and all of that so I could keep driving license so It’s not a case of not eating. Before diagnosed hypoglycaemia and forced feeding and all that carry on I was accused of having eating disorder and asked accused of being sick after food. I was 8 1/2 stone then so I think I’ve more than proved I don’t have issues with eating. For gods sake I got fat following those dietary plans and force fed enough cheese sandwiches to cause ptsd against cheese.
But of course hospital records are not always linked to gp records so the gp knows best and knows everything from a quick look at 1 set of results
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Buttercup1283
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I bought tables u put under the tongue and a mouth spray of b12. I told them over the phone that the previous test the level was 170 and they just said well I’m ok now and in range. I don’t think they took notice of the fact I have been taking oral top up b12.
Faf on is basically saying it’s not much effort and hassle.
I’m in hospital seeing Rhumatology specialist (I’m in n out of so many departments in that place ha ha) so I will just mention it to the lady there and she will be able to see hospital records. Hopefully she might be able to help, if not convince gp then atleast have a chat with my heamotologist about getting injections there instead. It’s a pain in the bum as hospital carpark costs money and I hate driving at the moment and my gp surgery is literally over the road from my home so crossing the road for injections would have been much easier for me
Get the specialist at the hospital to write to gp. The neurologist at the start did that for me. He just put to have b12 injections as per bnf guidelines. I went back on every other day at that point .
I don’t know what I’ve been tested for. I have regular blood tests for full blood count and organs and recently went through ct scan. I have a fair few pages of results on the heamotologist blood tests but don’t know what any of it means. I don’t know results of the follow up test where level was apparently 211. They were testing reactive proteins or something but gp wouldn’t tell me results and can’t access online as it’s from the hospital testing. My specialist said she thinks it’s down to auto immune disease and it’s poor absorption from food and I will need injections for life. I’m afraid anything technical I can’t remember but she said about it being anemia. Despite having too many red blood cells. The red blood cells are usually something to do with bone marrow but she says something else is creating too many (I forgot what she said) but she believes the immune system is to blame over stimulating something or another and the blood cells are not good they are damaged.
I’m really gonna have to start recording my appointments coz I forget everything
"My specialist said she thinks it’s down to auto immune disease and it’s poor absorption from food and I will need injections for life. I’m afraid anything technical I can’t remember but she said about it being anemia. "
I think your specialist might be referring to the possibility of Pernicious Anaemia.
You can get copies of hospital records . You'll probably need to contact hospital records office. See hospital website for details or ring general number and ask to be put through to records office.
Oh she did say the b12 will increase the red blood cells which is going to push level really high and more frequent tests will be needed to keep on top of it and deal with it when it gets to dangerous.
Buttercup123. The image containing your blood results still displays some of your personal information and your GP's name. I've deleted the image to protect both sets of personal information.
Please can you redact the information and re-post the image containing your results.
actually the difference between 170 and 211 is within the 20% accuracy of the test so doesn't prove anything one or another.
You can get auto-injectors which might help if you did decide that there really is no alternative but to treat yourself.
PA is an absorption problem and is best seen in relation serum B12 by a drop in levels over time.
The polycythemia is going to make interpreting blood counts for macrocytosis difficult but macrocytosis is only present in 20% of patients with B12 deficiency.
Do you know exactly what other tests were done by the hospital and what the results were?
Haemoglobin high, white cell high, platelets high, red cell high, heamocrit high, lymphocite border of being high, IgA high, IgM low, erythrocyte sedimentation is border but usually high, serum urea low, serum folate just in range, serum tsh bottom of normal, crp always high.
The latest blood results I don’t have nor know what was tested but it was to re test b12 and reactive proteins and things.
They did write to gp but unfortunately it was not worded in such a way that it ways u must provide injections. It just says injections advised and a retest to be done to determine follow up. Something along those lines, to which gp is waiting for hospital to re test me and I have told them that they already did right after the letter was sent and that’s when they said in one phone call level was 211 and the phone call when they said it was a faf on and I don’t need them they were unable to tell me the results or what was tested. They just said I don’t know but someone has looked at them and said it’s normal.
I have ordered a box of b12 1ml as recommended from a post on here but it’s getting someone to do it for me as my hands are not good and obtaining needles.
What dose is given for the first 2 weeks with the 3 times a week injections? And what dose is given on the monthly?
I was 211 count on B12 and I had nerve damage and muscle wasting in my legs. Found a doctor that gave me prescription for 52 shots a week apart and now I'm about 75% better. I still take 2500 mg of B 12 everyday --you must change doctors and meanwhile I would take a large amount of B12 oral every day--you should be 400 on your test. I fired my first doctor because she would only give me one shot and that was it.
I don’t know who I spoke to on the phone so will have to try find out which doctor said no and make an actual physical appointment with a different one I guess. Problem with making appointments is I can’t guarantee I’m going to be able to move that day to get there and I’m on my own so no one for help
You say that you don’t have good enough use of your hands to self -inject . You could look into the device that a Danish company makes called an “Auto-injector “, to find out if it would be useful to you . I know that some people who are needle phobic use it . It costs about £100.00 . The site is unionmedico.com
You mention the Thyroid Test TSH was at the bottom of the range - do you have the actual result with the range ? Unfortunately testing only the TSH does not reveal the full story. You also need the FT4 - FT3 testing - the latter is the most important and yet rarely tested in the NHS. You also mention auto-immune issues so it would be good to rule out Hashimotos - auto-immune thyroiditis by testing the anti-bodies TPO & Tg.
I appreciate this is the PAS/B12 Forum but auto-immune issues often overlap and due to inadequate testing Thyroid issues are often missed. I have Hashimotos and a B12 issue due to Crohns surgery.
Getting B12 shots is not a “faf on”. For those of us who need them it is a new lease on life. Many of us have seen dramatic restoration of function and health after getting the shots. I hope you find the issue and if you need shots get the shots as soon as possible.
Update- saw Rhumatology yesterday and she couldn’t give b12 but set a re test in few months and said if it’s still at the bottom of the scale she will write to gp. She showed that the heamotologist letter to gp said the b12 reading is not always accurate so gp is just being difficult. They seem more concerned about platelets being high then the other things. I found out intrisent factor reading was 0.8 level range 0-8.5 apparently so I don’t know what that means. I also got the talk about depression and asking for medication and counselling because my mother died few months ago and I’m alone looking after my autistic son. I can’t stress how many times I said I’m not depressed I’m weak and exhausted. I get up run a sink of water to wash dishes but need to lay down a bit before I get up and actually wash dishes, lay down then get up to dry them. I’m not depressed I’m dragging my warn out backside urghhhh
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