B12 Test 5 minutes after B12 course?

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To sum up; I was given a course of B12 injections for a week, then a blood test to check my B12 levels was taken 5 minutes after the last injection. My GP then called to tell me my B12 levels were 'unusually high', I explained that the test was taken just after the course and after a long silence he replied Yes well the levels are unusually high so you won't need those any more, maybe it is an underlying infection? Thank you.' and then hung up.

Four months later I feel terrible, but I don't know how to get them to do another test to check my B12 levels -and- I'm sort of miffed they would suggest it could be an underlying infection but not help me follow that up.

- - -

I'm 26 years old, I started feeling really awful about 6 years ago. I felt confused, breathing felt hard, my body fely heavy. I would feel extremely full and tired after eating small meals. Mostly I found functioning suddenly became really difficult.

I got a lot of blood tests from a lot of different doctors, each time they would ring me up, tell me that my red blood cell levels were 'a bit low but it would be the time of the month', then leave me with that. I'd continue to feel unwell and book again a few months later and get the same.

Then nearly 2 years ago the GP I was going to see was away and I was sent through to the nurse practitioner instead, who asked me when my next B12 jabs were due.

I'd never heard of this and told her so, she told me with results so low I should have been on them a while ago but as a practitioner she couldn't book the full starting course. I had one jab then, and two more at three month intervals after that. I felt so much better, then I moved houses.

For starters it was 2 months before I managed to change my GP , then I was told I needed a course of injections all in one week as I'd never had this, but that they wanted to check by B12 levels themselves. So they booked an injection on monday, Wednesday and Friday and the blood test 5 minutes after the injection on the Friday.

The long and short of it is I'm out of the loop now, when I try to get another blood test done I'm told I don't need it, but I feel terrible and rather than getting any sort of solution to this I'm back to square 1.

Please can someone give me some advice on where to go from here? Should I try to book privately somehow? (I'm not sure I can afford it)

I'm so exhausted, I feel like this is ruining my life but there's nothing I can do about it?

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6 Replies

  • Posted

    Your GP has totally failed to follow the current guidelines for B12 treatment.

    I suggest contacting the Pernicious Anaemia Society to see if they can intervene on your behalf. It is possible to pay for private blood testing to prove your levels have dropped again. Obviously the test your GP did within 5 minutes of having a B12 injection would show a high level! 

    You may need to pay a membership fee to the Pernicious Anaemia Society, but it could be money well spent. Best wishes Marion 

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    • Posted

      Thanks Marion! smile

      I actually signed up to the Pernicious Anaemia Society this afternoon as I wasn't sure what else to do. (but their hotline closed at 2 so I guess I'll try them tomorrow)

      I made an appointment with my GP in the meantime, but the earliest appointment was in 2 1/2 weeks' time.

      I am considering getting provate blood testing, it's pricey but I was hoping I wouldn't have to wait so long. Does anybody have experience with getting blood testing done? Despite trying to research it, I'm no closer to finding out the procedure for booking something privately or the price for these sort of tests.

      (Thank you so much for your reply, by the way!)

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    • Posted

      sorry Triangle, they won't allow me to name any blood testing service on here.

      I suggest you contact the PA society tomorrow, for more advice. 

      Best wishes Marion

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  • Posted

    Do you have any idea why you are B12 deficient?

    Are you vegan or vegetarian,

    Have you had gastric surgery,

    Are you on medication that affect B2 levels such as Metformin, antibiotics, proton Pump Inhibitors, Antacids, the contraceptive Pill etc?  

    Have you had dental treatment or surgery where nitrous oxide was used?

    Is there an history of Pernicious Anaemia in your family?

    Do you have thyroid problems, gastritis,Crohn’s disease, irritable bowel syndrome, gluten enteropathy (celiac disease), or any other disease that cause malabsorption of nutrients.

    Have you had eating disorders (anorexia or bulimia) or problems with alcohol?

    Any one of the above can cause B12 Deficiency and I can only suggest that if you can "see yourself" in the above that you make a list of them together with your symptoms to present to your doctor and insist on Serum B12 and Serum Folate tests be done.

    I am not a medically qualified person but one who has had P.A. for 45 years and know how difficult it is to persuage doctors to treat you in accordance with your symptoms and not to simply look at their computer screens.

    I wish you well.

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    • Posted

      Thanks Clivealive smile

      I'm not vegan or vegetarian, if anything I've always eaten a lot of red meat, beans and dark leafy vegetables, when I found out I was anaemic I wondered if that was why I always craved those things.

      I've never had any surgery or dental with nitrous oxide.

      I last took antibiotics a year and a half ago for a throat infection, but I'm guessing that's too long ago that it would still be a problem now?

      I've been checked for thyroid problems, diabetes and digestion problems before but nothing has ever come up.

      I don't have any eating problems and I hardly ever drink alcohol - I do have psoriasis and the alcohol affects it badly.

      I was told by a nurse that people with psoriasis have an increased risk of other auto-immune diseases so I've always assumed this was the reason.

      Oddly, I found that the B12 jabs I was getting made my psoriasis go away completely, I'd had it my whole life and nothing had ever curbed it, then i went for B12 jabs and it disappeared overnight.

      (I don't know if that helps anybody I just found it incredible)

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    • Posted

      You actually sound  "rudely healthy" to me - apart from an apparent B12 Deficiency which when injected  with B12 clears up your symptoms so why oh why can't doctors treat you when you can vouch for the injection's efficiency?  

      B12 is cheap, it's safe, and you can't overdose on it, yet they will cheerfully dish out dangerous drugs which carry a plethora of nasty side effects.

      As I've said I'm not a medically qualified person so from my own experience I can only assume that you have an absorption problem.  

      Have you been tested for Anti Intrinsic Factor or Anti-Gastric Parietal cell antibody?  Both are associated with auto-immune problems.

      You didn't say if there is a history of Pernicious Anaemia in you close family. It might be important as P.A. can be inherited,

       

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