What Should I Do Now?

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I'll try not to drag this out.  I was prescribed omeprazole 15 years ago and took it religiously for 8 years. Nobody ever suggested I should stop taking it. Right from the beginning, my RBC count started to fall. I didn't know about the connection between stomach acid, B12 absorption and RBC numbers. After 8 years I decided I'd had enough of taking medication and found I was fine without the omeprazole, but my RBC count still continued falling and nobody said anything about that either. Then I discovered the connection between RBC count and vitamin B12. Two weeks before my next scheduled blood tests I started taking sublingual B12 and for the first time in 8 years, my RBC count went up by 2 points, but when I suggested that I could have B12 deficiency I was told my test results for B12 were normal. So I started taking B12 sublingually and did ok for a couple of years, but now I find I need to take 8000mcg daily to feel normal and I have never managed to get my RBC count above 4.1 from a low of 3.8. On top of that, four months ago my tongue became swollen and burns or tingles if I cut back on my B12 dosage at all. My GP and a specialist both say because my serum B12 is high, I cannot be B12 deficient.

There seems to be a huge amount of ignorance amongst the medical profession regarding blood test results for B12 deficiency. It states on this site that it causes either low RBC OR low haemoglobin...not both.  Of course my haemoglobin levels are within the normal range, so in "their" opinion I don't have B12 deficiency.

I am just about ready to have a mental breakdown over this. I don't want to go blind, become crippled or die because I can't get a diagnosis!  I live in NZ and we can't buy B12 injections here otherwise that's what I'd do.

I can't help wondering that there might be rare cases where some people can't absorb B12 from the blood and must have it injected into a muscle but of course what would I know? Again I would probably be laughed out of the office if I dared suggest it, but I just wish doctors would listen to their patients and listen to the symptoms they describe. In the 'good old days' before anybody thought up the idea of blood tests, doctors had to 'read' patients' symptoms without relying upon numbers on a chart. They might do well to go back to that method today IMHO.

Does anybody have any suggestions about where I go from here?

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  • Posted

    About a third of what specialist committees recommend is rescinded in 3 years. Whether specialists are up to date with that is questionable. Gps may be largely regurgitating what they learned 20-40 years ago about pernicious anaemia.

    One assumption is that B12 as measured that is one form by one method is accurate so if the level shows as ok it is.

    Unfortunately that does not show the forms which are utilisable for that person -there being variations in conversion. That you responded to one form suggests that is ok  for you.

    I don't know where on this site it says such and such other than by a presumed lay person.

    I can assure it is possible to have low haemoglobin and RBC, and on my limited knowledge I would think that not unusual. In any event I have lab results in front of me showing just that.

    There is a danger too in people assuming that because something is low and a bit helps that a bucket will help more. Think of adding salt to a tasteless soup.

    If you responded to 1000mcg (500 daily gives a response) but don't to 8000mcg or at least get other symptoms then perhaps you are assuming B12 is it. Changing the form of administration won't help. 500 mcg is usually enough unless there are special factors.

    You might look at what other factors may be involved. Like why should b12 alone be low?

    From the tongue  I would look at other B vitamins collectively.  I would also look at quartefolic as nearly half  don't deal with folic acid well.

    I would also look at the side effects of omeprazole presumably for gastric reflux. The dosage may be a factor but that is a long time to be on it and it is possible anyway that it impaired your ability to secrete acid. That is testable. If so the your ability to absorb various things may be impaired. If so then betaine hydochloride might help.

    I can't say do this or that rather you might try ....

     

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  • Posted

    Hi Rose. Taking sublingual b12 causes falsely high b12 serum test results. You need a 3-4 month supplement free period to obtain an accurate b12 serum result. Your folate needs to be at a good level for supplements to be able to metabolise efficiently to cell level. Functional b12 deficiency can show normal levels of b12 in the blood. 

    You have 2 options either:

    Stop supplementing for 3 or 4 months to get accurate results

    Or

    Self treat with b12 and folic acid. 

    The b12 serum test measures both active and inactive b12 in blood, therefore is not accurate in determining deficiency. Can you ask for homocysteine and mma tests?

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    • Posted

      hi heather. just read your response to Rose. could u elaborate on the false positive results that b12 sublinguals can give? is thsi peculiar to sublinguals or extend to orals as well? i ask coz i was on sublingual 5000 mgs b12 for some time with no response. shortly after going onto subcut. injections, some of my symptoms have begun to improve albeit v. slowly.
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    • Posted

      Sublinguals fill the blood with the inactive form of b12. The b12 serum test measures both active and inactive forms of b12, therefore, sublinguals causes falsely high rests because of the amount of inactive b12 in the blood. 
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    • Posted

      Thanks heather. can u tell me if this a 'peculiarity' of sublinguals or does it happen with the /'orals' and the pro-vitamin forms variety of the injections as well?

      thanks in advance Caitlin.

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  • Posted

    hi Rose. sorry to hear of your dilemma & of course not helped by the medics. i may not be reading your post correctly, but could u say what exactly are your symptoms? u maybe just anaemic & respond to iron & folic acid treatment for that.

    Caitlin.

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  • Posted

    Hi caitlin...The main symptom is low RBC which started falling when I started taking Losec 15 years ago.  It continued to fall after stopping Losec so I imagine my ability to absorb B12 via my stomach has been impaired. I know I have low stomach acid. The only time my RBC count went up is when I first started supplementing with sublingual B12, but my RBC count only went up 2 points and has remained there ever since.  Four months ago my tongue became swollen and it tingles and if I stop taking any form of B12, I simply cannot function.  I am tired, have no energy, am very irritable and very apathetic.  My skin is very dry and flaking off like there's no tomorrow and wounds don't heal as easily as they used to.  The wound heals but the skin takes forever to cover the wound. I have had other symptoms in the past such as palpitations and dizzy spells.
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  • Posted

    Heather...I get 10mg of folic acid from the daily MV I take. Is this enough?  I also have various food intolerances and am gluten intolerant.  It gets complicated!  I have thought about going off all vitamin supplements, but this is scary because of my possible malabsorption problems. For instance, the MV contains B12. I know this is of no use to me, but it will be skewing the serum B12 test results and I still need the other vitamins.  Just don't know what to do.  if more folic acid would help, I'm certainly prepared to give that a go.  Please tell me what you think.
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  • Posted

    Oops! Sorry Heather.  The folic acid is 400ug which only equates to 0.4mg of folic acid. Too little or what?
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    • Posted

      Do you have blood results for the following:

      Mchc

      Mcv

      Ferritin

      Folate

      I can advise you with more accuracy. 

      A low mchc would indicate low iron

      A high mchc would indicate low b12

      Low ferritin would indicate low iron

      Low folate would explain b12 deficiency with normal b12 serum result

      Low folate would need 5mg daily folic acid. 

      I have sent you a personal message xx

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  • Posted

    hi Heather...I've had wavering MCH and MCV values, both 2 points above normal. GP swears it has nothing to do with B12! This at the same time as RBC of 3.8. ferritin I think is ok although I don't have latest results in front of me. Iron could be a bit iffy and taking supplements is difficult with low stomach acid, but I might give it another go. There were no folate results on my last printout although the test was supposed to have been done. This was in August. I am trying to take betaine HCl to help improve my stomach aicd levels but I also have a hiatus hernia which complicates things. Thanks very much for the info re folate levels.

    Hopefully you received my reply to your PM.  Many thanks for that info! smile

    xx

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  • Posted

    I don't know where the 5mg of folic acid dose comes from. The RDA is 240mcg. More of supplementary folic acid is absorbed. Sure if you were low you might build it up but 20x?

    As I said many can't use that form see the MTHFR gene.

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  • Posted

    Hi chris...I don't know if I have the MTHFR gene and doubt there'd be anybody here in NZ who I could ask to test me for it, but thanks for the info re Quartrefolic.  I see I can buy that in NZ so maybe will give it a go.  Should I be able to absorb that whether I have the MTHFR gene or not?  

    I'm a bit wary about taking 5mg a day of folic acid but I've seen where 1-5mg is recommended for deficiency. I could easily be deficient in folic acid because of my various food intolerances and low stomach acid.  I am taking 2 betaine HCl capsules with meals at the moment and am keeping my fingers crossed that I can tolerate this.  From my records, I don't think my folate levels have been checked for 2 years, so that needs looking into, but I'll get some Quatrefolic and trial it. Unfortunately I can have problems with supplements so hopefully I won't experience any with Quartrefolic.

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    • Posted

      hi Rose. hope the posts from heather & others will throw some light on the possibilities of what's going on with the blood levels. as there's a lot going on in your health, i'm wondering of the possibility of asking for a referral to a heamatologist. getting a 'proper' diagnosis on the blood anomolies i.e. why your RBC keep dipping would be a good start.

      sadly, successful health management these days does tend to include 'medic management' as well. so bringing someone along with u to the GP would help dilute that 'power' dynamic that GP's tend to automatically & probably unconsciously create. ensure your /advocate is well informed and make a list of questions etc. in helperthe UK we have a hospital advocacy service called PALS, i wonder if you have the equivalent ? a call to the local hospital might signpost you.

      best wishes with moving forward

      Caitlin.

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