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4 years of dizziness and vitamin B12 is 290

Posted , 5 users are following.

helen63401
helen63401

Hi all,

Hi all, I have had low ferritin for five years (that's another story) but recently asked my GP if she would test my B12 too as this has never been done and I know the symptoms of anaemia are similar to deficient b12. Reluctantly she agreed! My test came back and I was told it was normal. I have had dizziness, fatigue, blurred vision, poor night vision, brain fog and depression now for five years. My ferritin was as low as 5 at one point and my GP still wouldn't refer me for IV iron or injections.

Something told me to ring up and ask for my actual b12 result and I was told it was 290. I realise this is on the scale but from what I have read I believe it is low. Given that my symptoms have been with me so long now and I have reached a real low point I am considering asking my GP for injections. I know she will probably say no, she makes me feel like I'm a total moron and like I am going mad. She just says I'm on the scale so shouldn't worry. But I can't not worry, I feel ill every day, some days I can't get up, I can't drive anymore because of the dizziness and I'm just so miserable. I just want to feel better. I'm getting married in September and can't even contemplate it right now feeling this way. I don't even have the energy to plan. :-(

Am I justified asking my GP for injections? Did anyone else have a battle getting these? If so, what did people say to get their GP to agree? Does anyone know if injections can be obtained privately? Any advice or suggestions are gratefully received.

H xx

1 like, 18 replies

18 Replies

  • jazzyanne
    jazzyanne helen63401

    Posted

    hi are you in the uk? most expects agree 500 - 700 is a good range, gps should go on symptoms not ranges , sadly there is many like you out there i will sent a private email x
    • helen63401
      helen63401 jazzyanne

      Posted

      Hi jazzyanne,

      Thanks so much for the response. Yep, I'm in the UK. That is my point entirely, I am going to go back and give it another try but fear my GP will be as disinterested as previously. It's a real barrier between us - she is only interested in ranges! Thanks so much for the reply.

      Best wishes. x

  • marion29181
    marion29181 helen63401

    Posted

    Hi Helen, if your ferritin is constantly low you will have trouble actually using the B12 you have. Also only 20% of B12 in your bloodstream is available to reach your cells. If you have symptoms it should be treated, and certainly taken seriously by your doctor. If you have a look at the Pernicious Anaemia Society website there is a full symptom list on there. Which can be printed off and taken with you to your GP. 

    Has your GP tested your thyroid function? This can go together with low B12, and both problems will cause similar symptoms.

    My own B12 was diagnosed when the level had dropped to 176, and I was put on injections straight away. I already had been suffering from an underactive thyroid for many years.

    if your doctor won't help, the Pernicious Anaemia Society can intervene.

    There are also sprays or sublingual lozenges available to supplement your B12. If you have any stomach issues,coeliac, Crohn's, IBS, or eat a strict vegetarian or vegan diet, you won't be absorbing B12 from your food.

    The injections of B12 are not expensive, many people with unhelpful doctors are buying their own supplies and injecting themselves.

    My GP has been very good, and has even increased the frequency of my injections. Best wishes Marion 

    • helen63401
      helen63401 marion29181

      Posted

      Hi Marion, thanks so much for the advice. I should clarify, I was on a PPI medication called omeprazole for 5 years, this medication hinders the ability to absorb nutrients as it reduces your stomach acid considerably. It is a well documented issue in the medical world that this drug can cause deficiency. I was on iron tablets for three years whilst on this medication and my iron would not go up from 5 at all. My GP did not make the connection, I did it after doing my own research. Within 6 months of coming off this drug my ferritin has gone up from 5 to 81. So on this basis I don't think I have an absorption problem now I'm off that drug. It frustrates me that I was on iron for three years with no improvement and my GP didn't make the connection. She still is dubious now.

      I will definitely look at the pernicious anaemia site and take a list of symptoms with me. I am so desperate for someone to take me seriously after all these years. I will also look in to injecting myself, anything to get better. Thanks for all your suggestions, I really appreciate it.

      Best wishes.

      X

    • marion29181
      marion29181 helen63401

      Posted

      Hi again Helen, I also take a PPI ( Lansoprazole), and am unable to come off this medication as I suffer from oesophageal spasm. This has hospitalised me twice with suspected heart attacks due to the chest pain it causes. I only found out about the issues with this medicine after my low B12 diagnosis. 

      Hope you can get the help you need. Best wishes Marion

    • dee50031
      dee50031 marion29181

      Posted

      My level is 280, I have bouts of dizzyness, palpations, pain in my thumb blurred vision now and again but have had what seems to be infections, I have ulcerative colitis would that impact mye absorbing b12.Dr said normal but did have insuffient vit d

      ,

    • marion29181
      marion29181 dee50031

      Posted

      Ulcerative colitis will certainly mean your ability to absorb vitamins from your food will be compromised. Did the doctor say 280 was a normal level of B12? I got infection after infection when my B12 was low. If VitD is low too your GP should certainly be treating that. See if your symptoms improve once the VitD levels are increased? Best wishes Marion
    • dee50031
      dee50031 marion29181

      Posted

      Yes Dr said vit b12 was normal, I have prescription for vit d, just curious as to if my other symptoms could be b12 with that level 280 x

    • marion29181
      marion29181 dee50031

      Posted

      Hello again Dee, yes it's perfectly possible to have symptoms of low B12 at that level. I also have underactive thyroid, and the advice with that is to get your levels up to 800 to 1,000. So I think any accompanying condition is likely to increase your need for B12.  In Japan they treat anything below 500 as being deficient. The other thing I meant to ask is "have you had any surgery?" because anaesthetic will deplete B12. Mine developed in the years following gall bladder, appendix, and several investigative operations. Best wishes Marion 
    • dee50031
      dee50031 marion29181

      Posted

      No not had any surgery, had some teeth out under sedation but that is all, I was taking reflux pills for a few months but come off them as I didn't think that was causing my problems x
    • marion29181
      marion29181 dee50031

      Posted

      Hi Dee, anything that lowers stomach acid will mean you don't absorb things as easily from your food. Did you take the pills for reflux for a long period of time? If not, then I don't think they will have had a significant effect. My PPI has been a constant medication for about twelve years, long enough to add to my problems, plus the surgeries.

      Will your Doctor give you some B12 injections? If not, you may have to try supplementing yourself, sublingual (under the tongue) sprays or lozenges work quite well. I have used the spray myself to boost my levels when on holiday.

    • dee50031
      dee50031 marion29181

      Posted

      not been on ppi for long so not a problem, I am having my ferritin levels and folate checked next week, but if those are normal then will probally have to get spray for myself x
    • dee50031
      dee50031 marion29181

      Posted

      just update, got my ferritin cheked its 22, low end is 11, folate is 4.1 low end 3.8, b12 retested down to 252, going to be rechecked again around end of this month, was adised to take folic acid to bring my level up and thiss should also lower my b12 slightly more to take me under level for treatment, if not i am thinking of si, 
  • Lanlala123
    Lanlala123 helen63401

    Posted

    Hi, I've been having dizzy spells on and off for over two years, which got considerably worse over last six months, plus bad tinnitus, and more recently bad aches in arms, neck and jaw and chest pains, had Eco abd quite a few bloods done, my vit b12 was 127, but one dr said that was fine!,, anyway my symptoms are getting worse, 2 a&e visits and Drs more bloods etc in last two weeks, saw another dr today and I mentioned my vit b12 and he was concerned as its still at 127, he gave me an b12 injection straight away and another 5 to come in next three weeks !! And is going to check my intrinsic levels too, plus being referred to consultants for chest pains etc,  so it does work to keep on at the Drs, !, they don't see the big picture when it comes to our health etc, also I've been taking lansoprozole for over 5 years as I'm on regular Ibrufen (naproxen) for joint pain etc. Wishing you good luck! X
    • jazzyanne
      jazzyanne Lanlala123

      Posted

      Am glad your getting the correct treatment now are you feeling with the b12 injections or is it early days, the gp did my sons intrinsic  factor what will that show ? his b12 was 279 and went down to 200 hes only 22 we had to beg for more tests, are you takiing folate acid? x
    • Lanlala123
      Lanlala123 jazzyanne

      Posted

      Hi, only had first injection yesterday, so not really expecting any change yet.

      i took folic acid for three months which did bring my folic levels up. I believe the intrinsic factor is a test to see if your body is absorbing the vitamins or not etc, but not 100% sure, need to look into it more. But you need to keep on at the Drs, some take low levels seriously, some don't.! But we know our own bodies and need to be strong and stand up for ourselves, good luck!,

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