B12 level 156 - GP won't treat

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Feeling worse than ever, can't even manage a flight of stairs without being totally out of breath. So so exhausted, nerve pain (although I do have a back issue so not sure if related to that) dizzy spells to the point that I'm worried about driving. Can't walk along a corridor without veering off to the side feeling giddy and as for my memory - I forget everything.

So I've had B12 deficiency previously (112) but was IF negative so treated me with the 5 injections and retested 6 months later, I was just over the treatment threshold (thinking 186 but cant remember) so they wanted me to wait 12 months to be retested!

Anyhow recently exhaustion had got so bad that a couple of weeks ago I went to my GP and said I wasn't happy to wait till December as I really feel like my levels are low again. She agreed the blood test which i had a week ago and today phoned me with the result of 156 - she said they will not give me injections as it's not below 150 and I'm to be retested next January to keep an eye on it.

I have a very limited diet due to intolerances and LPR and suffer with upset stomach daily due to IBS so I feel this is the reason why I'm deficient. I'm also on Metformin & Omeprazole which I believe also deplete your levels.

I feel like I'm going mad as feel awful and was sure my levels were low. Now I don't know what's causing all my symptoms and am also worried that by January I will definitely be deficient and will gradually feel worse and worse.

Just had to vent really as am fed up feeling rubbish.

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  • Posted

    The meds tour on do deplete your B12 and other nutrients. You should be taking B12 supplements. I'd look for another GP if yours won't help you. You shouldn't suffer that long.

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    • Posted

      I've been told not to take supplements without permission from GP as I'm on a big list of medication daily and they may interact. I worry that I'm vitamin deficient in alot of vitamins as I can't eat any fruit or most veg, but even though I tell every doctor this it seems to be overlooked. There's one GP in my surgery who has always been good every time I've seen her, but she's not available until 30th September, I've already booked that appt for another issue but maybe I'll see if she can help with the B12 and allow the injections

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    • Posted

      If you can take B12 by injection without medication interaction, you should be able to take B12 supplement. I recommend that you look for methyl form & ask a pharmacist about interactions. You need a new doc!!! Do not suffer in silence. i'm at a b12 level of 360 & my doc said begin b12 immediately.

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    • Posted

      Thanks for your advice. Have had a quick look on Amazon for these. Will have to look into this further as cant find any the moment without artificial sweeteners or fructose in which I'm highly intolerant to (causes severe diarrhoea so I wouldn't even get any of the tablet into my system) maybe I could look for something in tablet form that probably doesn't need sweetening

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    • Posted

      I see my reply from yesterday is still being "moderated" but in the meanwhile, with your digestion problems and other intolerances, I think you really need urgently to have injections of B12.

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  • Posted

    If you start supplementing it may skew future blood test which might make it harder to get the injections in the end.  I agree maybe find another doctor.  Also I believe that the Pernicious Anaemia Society can intervene with your Doctor.

    I also was given the injections and then had them stopped.  When I started to fall low again I pointed out to my Doctor that in other European countries and Japan they start treatment when levels fall below 450.  He agreed to start injections and I have been having them ever since.  I did the same thing for my elderly Father with his Doctor with the same result.

    Good luck.

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  • Posted

    Mmc1972  This is the reply I posted last night but which is still awaiting "moderation"  The only difference is that I have removed the credit for the authorship of the text in italics

    I'm not medically qualified but with your neurological symptoms, the fact that you are on Metformin and Omeprazole, you have a limited diet, reflux, IBS and that your B12 level has previously fallen so low that you had to have five injections suggests that you have an absorption problem and you will probably need to have them for the rest of your life.

    The intrinsic factor test is known to be at best only 50% accurate.

    Please don't self supplement until after you hopefully see your "good every time I've seen her" doctor at the end of the month.  Make a list of all your symptoms and if possible take someone with you who has witnessed them.  This way no matter which doctor you see they won't be able to shrug you off by saying "you are six points above the lower limit" on the serum B12 test.

    On page 11 in the book "Could it be B12? – an epidemic of misdiagnoses”, under the heading "Types of tests for B12 Deficiency" talking about the Serum Vitamin B12 Test it says:-

    However, it appears that these markers demonstrate B12 deficiency primarily in patients whose serum B12 is in the "gray zone" (a serum B12 result between 200 pg/ml and 450 pg/ml).  We believe that the "normal" B12 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 550 pg/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.

    Please also ask for your Folate level to be checked as this is essential to process the B12.

    I wish you well 

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    • Posted

      Thank you, I'mean going to print some stuff out and go to that appointment armed with info. I'm on amitriptiline for nerve pain and the side effects are awful so if any of this pain could be B12 related I'd much prefer to off the Amitriptiline if the injections helped

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  • Posted

    Hi all, Just wondering whether you think the content of what I am going to put in a letter to my GP is ok, I do not want to rant and rave at her as this is not the Doctor that refused to treat on my level of 156.  But this Doctor is the one I often see and has missed previous opportunities to investigate my low B12 levels so wish to get this across, she knows I'm very quiet and subdued so will know something is copied and pasted from a book or website if I come at her with demands etc, so I have attempted this in my own personality.  This is the content of what I have come with for a letter which I'd like to post in the next few days:

    I am writing to you querying my recent blood results.  I enquired at reception and was told a Doctor would phone me regarding the results.  A doctor whom I did not recognise phoned me later that day and has told me no further action is required regarding my results but my B12 would need retesting in January 2017 but the level is fine at the moment. 

    I have some concerns regarding my B12 result; I did ask the specific result and I think I understood the result was: 156.  As I have had B12 deficiency in the last year I feel that this result should be treated or investigated especially as my reason for requesting the test was due to symptoms I was experiencing. 

    Please see my history regarding B12 below, as I now longer have access to my results online, I have to estimate some dates/results.

    History

    Since October 2014 – Buttock Pain (Piriformis) followed by nerve pain a few months later and back pain all of which are ongoing and causing issues currently for which I have just been prescribed Amitriptyline and Celebrex for a month trial.

    May 2015?  - Appointment with Dr re: difficulty swallowing – Dr requests blood tests following this appointment.

    June 2015 – Blood test results show B12 deficiency (Level ?112 ) Intrinsic Factor Normal, no investigation into why deficient (Note. I was taking 5mg Folic Acid daily at the time of the blood test– stopped taking this a few months later when my husband & I decided to stop TTC following 10 years of unexplained infertility)

    June 2015 – B12 Loading Injections – following injections I feel more energy and was able to stay awake past 10pm at night, bleeding gums stopped, had a couple of months where nerve pain in foot wasn’t as bad as it had been but Piriformis muscle still playing up whilst sitting.

    December 2015 - I request a 3 month follow up B12 test, results – Normal – No treatment required (But I believe they were only just within the normal ranges? - Could this be checked?)

    After the December B12 test - No follow up for B12 suggested

    August 2016 – I asked GP for retest as I was feeling exhausted again, intermittent dizziness, very out of breath easily and was about to start taking amitriptyline which I knew could make me feel extremely tired.  Blood test booked for 30th August.

    6th September 2016 – Results phoned through by a different Doctor who I don’t normally see, I had difficulty understanding the Doctor on the phone, so not sure of Folate result but my B12 level was 156, the Doctor stated this did not need treatment and to return for a retest in January 2017, also queried HbA1C but also said those levels were fine.

    September 2016 – As I work at *** *** Hospital I looked up their guidelines regarding B12 deficiency.  A Level of 156 is within the Borderline range, *** Hospital Department of Haematology Vitamin B12 Investigation and Treatment Algorithm states:

     ‘When the B12 level is less than 150 pg/ml a presumptive diagnosis of B12 deficiency is made. Where the cause is not known, the laboratory will automatically check for intrinsic factor antibodies. If these are negative, a clinical decision has to be made as to whether further investigation is necessary for patient management. If the B12 is between 150 and 180 pg/ml, a therapeutic trial should be given. If there is a clinical response then a diagnosis of B12 deficiency is made and the appropriateness of further investigation as to cause should be determined. If there is no response, it is likely that the patient is not B12 deficient and other causes of the clinical problem must be sought.

    If further investigation is required, please contact a Consultant Haematologist.’

    My concerns:

    I’ve never received any follow up regarding my B12 treatment or have I been asked how I responded to the injections to see if I need further injections as per therapeutic trial advice in the extract from above. I had a good response to the B12 loading injections initially, albeit this only lasted probably 3 months at the most before I was again falling asleep early in the evening, easily exhausted and my gums started to bleed again.  I have had to request both my follow up blood tests due to symptoms returning.

    Since discovering last year that I had a B12 deficiency, I did look at my diet.  And I believe even though I have a very limited diet due to my IBS, intolerances, LPR and swallowing issues, I should be getting enough B12 from what I eat, if anything I would have always worried more about Vitamin C which I believe I get very little of in my diet.  The lactose free milk I have daily contains B12, I choose cereals fortified with B12 and I eat both Chicken and Bacon numerous times through the week and plenty of cheese.  I do have IBS and believe that on most days food does tend to go through me very quickly, whether this would affect the absorption of B12 I don’t know.  Also as you can see from my records I am taking the two drugs, Metformin and more recently Omeprazole, which can affect the ability to absorb B12 from food.  I have two immediate family members who have PA and are on B12 injections for life.

    For the reasons above I believe not treating or investigating my borderline B12 level of 156 is the wrong decision, my levels are very unlikely to go up so they will drop further, by January next year I could be suffering even further with the effects of the deficiency.  If any of my nerve pain and issues with my left leg/foot are due to B12 deficiency then these could become permanent nerve damage.

    Please see my list of symptoms below, some could be related to medication I am currently taking but some are also symptoms of B12 deficiency, so feel it is important to list them.

    Dizziness even when walking/sitting – sometimes I seem to veer off to one side feeling unbalanced, this has become worse since taking Celebrex/Amitriptyline but I definitely did suffer with the giddiness and dizziness prior to taking either of these medications.

    Increasingly becoming short of breath after short distances walking or up a flight of stairs

    Tiredness/Exhaustion, just feel physically exhausted easily even if not sleepy

    Bleeding gums

    Nerve Pain especially in left leg and left foot (Sciactica? Around hip area, shooting pains in leg and foot) Sensation in left foot is often different than right foot, often get pain or tingling in that foot, usually get pins and needles especially when sitting down.

    Tingling/Prickly pain in left thigh from tight clothing and pain/soreness on outer thigh when I lie on either thigh (this pain is only present on pressure ie. touch or lying on my side in bed or on a sofa)

    Often get muscle pains, not cramp but feels like the same pain but in spasms, and pain in joints in lower half of my body (ie. Hip/Knees)

    Blurred vision on occasions but not sure if this is due to Omeprazole as started when I started that?

    Dry Mouth, tingly tongue, white cluster of spots on lips (Chelitis?)

    Occasional buzzing in my ear

    Short term memory loss – e.g. sat a computer - needed to look something up, open ‘google’ and have forgotten what I need to look up.  Forgotten what happened on an episode of something I watched a couple of days back.  Forgotten conversations from a few days back.

    Whilst I know that my results have already been looked at by a Doctor, I would be very grateful if you could take a look and please give a second opinion, I feel that as the Doctor I see most often you probably know my history better and are in a better position to decide whether I need further investigation for my B12 levels or the possibility of ongoing B12 injections.

    I have a follow up appointment with yourself on the 30th September for the Amitriptyline and Celebrex review, so if you have a chance to look at this prior to the appointment I would be grateful for your opinion at the appointment.

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    • Posted

      Maybe also add finally that in other European countries and Japan they start treatment when B12 levels fall below 450.....
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    • Posted

      As I've said I'm not a medically qualified person but from what I know of Pernicious Anaemia, having had it for 45 years, reading your symptoms stongly suggest you may have it too especially as you have near relatives with it as P.A. can be inherited. I would definitely emphasise that point in your letter.

      Sadly the IF test is known to be at best only 50% accurate.

      Your medications will adversely affect your B12 levels.

      If you've had high folate and low B12 the effect is to make your blood cells look "normal".

      I hope your doctor gives your letter a sympathetic read and does some research of her own.

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    • Posted

      I'm trying to stick to stuff I can get from NHS sources at the moment as I work for the NHS I'm a bit dubious with what I'm allowed and not allowed to quote. But I've just received some very interesting facts about the haematology dept where I work from a PA sufferer , apparently they are suggesting 8wkly B12 for those with neuro symptoms so if I can persuade my GP to discuss with them that might sway her decis ion.

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    • Posted

      Thanks Clive, maybe I'll underline the bit about my sibling & mother having PA - and also mention it at my appt. I've seen something on one of the NHS sites about the intrinsic factor tests not being reliable, I'll bring it with me in case I get any resistance

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    • Posted

      (ADVICE ON FREQUENCY OF INJECTIONS)

      Ideally you should be receiving more frequent injections as the BNF guidelines say below of treatment with Hydroxocobalamin:-

      By intramuscular injection, pernicious anaemia and other macrocytic anaemias without neurological involvement, initially 1 mg 3 times a week for 2 weeks then 1 mg every 3 months

      Pernicious anaemia and other macrocytic anaemias with neurological involvement, initially 1 mg on alternate days until no further improvement, then [u]1 mg every 2 months.[/u]I think this is what you are looking for.

      Please be assured there is life after P.A as after 45 years I'm still "clivealive" at 75 

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    • Posted

      I've saved the BNF guidelines to my PC this morning ready to print, and will also bring a checklist of what I need to ask, including the folate.

      Interestingly whilst locating and saving that guideline to my PC, I discovered a copy of a pain diary that I sent my Pain Consultant at the hospital back in October 2015, I had my 5 x B12 loading doses in June 2015, and in the pain diary I note that during my holiday in late June/early July and the following weeks after that I had a big reduction in pain.  So have also added that into my letter to the GP, never thought at the time it could have been from the B12 injections but now the coincidence in dates is making me wonder, according to the pain diary by October the pain had returned and even got worse than before.

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    • Posted

      It is not unknown for symptoms to seem to get worse before they get better once B12 treatment has started.

      I sincerely hope your doctor is receptive and appreciative of all your efforts. Is it possible to take someone with you for the appointment who has seen your symptoms?  The GP is less likely to be dismissive with a witness.  I think you are being very brave but Hey - it's your life!

      Take care now

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    • Posted

      Update: Appointment was on Friday. My GP had my letter on her desk when myself & my husband walked in. She admitted she had had to look into B12 deficiency when she received my letter as didn't know much. But the end result is 5 x loading injections starting the day I return from my sisters wedding and 3 monthly maintenance doses - she also wants an update to whether they make a difference or not - but ..... I forgot to ask my folate level 😯 - I know knew I'd forget something! Have applied for online access to my results though so as son as I have access I can check. Thanks for everyone's help.

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    • Posted

      That is absolutely brilliant - not just for you but also for your doctor's next patient who presents the same symptoms.  

      It is reckoned that upwards of 40% of Ameicans are B12 Deficienct and are not aware of it, so maybe it's a similar scene over here in the UK.

      Folate (Vitamin B9 or Folic Acid) is essential to process the B12 when you start having the injections

      Good (natural) sources of folate include:

      broccoli

      Brussels sprouts

      asparagus

      peas

      chickpeas

      brown rice

      It can also be found added to breakfast cereals.

      However if your Folate level is low most people need to take folic acid tablets for about four months. However, if the underlying cause of your folate deficiency anaemia continues, you may have to take folic acid tablets for longer – possibly for life.

      So please do ak your doctor for advice on this before you start the loading doses as I'm not medically qualified.

      Finally, with your family history of P.A. is your doctor a) going to test your Intrinsic Factor or b) assume that you do have P.A. and schedule your injections for life?  She may need to do some more research.

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    • Posted

      Yes I will get that folate result. Except for fortified cereal which i do ensure i have daily I cannot eat any of the items you listed due to intolerances, maybe small amounts of brown rice but if need be i still have a months supply of 5mg folic acid tablets at home from when I used to take them.

      Yes the Dr did say that the lab will want to retest my intrinsic factor at intervals through my treatment. She did acknowledge that this test could have had false results especially with the family history but she also feels that my B12 may be low due to being on both Metformin (last 10yrs) and Omeprazole twice a day.

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    • Posted

      Just back from a B12 shot so asked the nurse about folate.  'normal result' so I asked the number and was told 5.5 which I think is on the lower end of normal?

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    • Posted

      My Folate test level range was 3.10 – 20.50ng/ml so if your lab used the same scale your 5.5 is bummping along at the bottom.

      Your nurse was probably just reading what it said on the screen without knowing how critical it is in processing your B12.

      I am not a medically qualified person but I strongly urge you to pop along to your chemist and buy some folic acid tablets from over the counter.

      My Folate level in March was 18.2ng/ml and I take 1 – Folic Acid 400μg tablet every day and have done so for more years than I can remember and this is in addition to what is to be found in things like breakfast cereals etc.

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    • Posted

      Got some here so will take straight away they are very high dose 5mg that I used to have on prescription so if I take them for a few weeks then swap to lower dose.

      Thanks for the advice

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    • Posted

      Yes - 5mg is high my 400μg is the same as 400mcg

      It might be wise to check with your pharmacist, tell him your 5.5 level and your reason for supplementing being the B12 and see what he says.

      Take care now.

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