May I have your thoughts?

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I'd really appreciate some outside opinions - I feel I've been dismissed by my doctor but her answers don't make sense to me.

A few years ago I was constantly tired, somewhat dizzy and generally out of sorts. Blood tests showed I was B12 deficient but without anaemia. I was then tested for IFA and the doctor ruled out PA. I had a couple of B12 injections and was told it was dietary (I was pescatarian so that didn't sound right).

My symptoms got a bit better with the jabs and I was told all subsequent blood tests came back within range. I recently found out that, while that's true, my B12 levels have been steadily dropping since the injections.

At the end of last year tests showed my folate levels were below minimum so, when I pushed, I was prescribed high dose supplements. My B12 was lower than all previous tests but still just above the minimum line. When I queried the downward trend I was basically told I am fussing and my B12 dropping despite me adding meat to my diet 6 months previously is normal.

I decided to take B12 supplements alongside the folate and bought some online. It's a few months since I finished them both and I'm back to being drained. I took 4 or 5 days worth of B12 (2mg) a couple of weeks ago but none since. I've decided to ask for blood tests again.

Other info: my aunt has PA and my sister vitiligo, both of which I've read put me at higher risk.

1) Am I right to be suspicious about my B12 or should I look elsewhere for answers?

2) Could the recent supplements I took affect test results? If yes, how long should I wait before asking for tests?

3) Are there any other questions to ask?

Thanks so much!

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9 Replies

  • Posted

    Hi Janet, interesting problem that you have. Your are right, the Piscatarian diet should not be a problem  in itself, BUT, it depends upon both the fish you are having and the vegetables. B12 levels are nice and high in game fish (trout, salmon, etc), but not so high in bottom feeders like carp. Looks like you may not be getting enough folate, but this is quite complicated. Folate and B12 are intimately related. If you are low in folate you sacrifice B12 to donate methyl groups for the production of SAM, the most important methylation reagent in the body. Once you do this your overall B12 levels will drop faster than can keep up with with diet. On the other hand, if your B12 levels are low you can't "trap" folate inside your cells, and so you lose your folate.

    On the other hand the fact that your aunt has PA could suggest that you may be developing PA, which may not necessarily only be due to antibodies to Intrinsic factor.

    Other things to consider would be what medications (if any) you are on as these can all affect B12 absorption. There is also hypothyroidism, which indirectly leads to B12 deficiency. On top of this is your methylated related genetics. You can get a better idea of all of this at http://www.vitaminb12deficiency.net.au/ . If they delete the link, contact me through the inmail (under my log), or you can do this anyway if you want more info.

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    • Posted

      Thanks for the link - I'll go take a look.

      I adopted a "normal" diet about 6 months before that last (deficient folate) blood test so it's odd to me that I should eat *more* B12 rich foods and not change folate rich foods (I eat lots of salads and stir fries) but end up with lower levels of each.

      I was not on any other medication when this all happened and thyroid tests consistently came back normal.

      Do you think the supplements I took recently could skew results? How long should I wait before the blood test results should be unaffected?

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    • Posted

      Hi Janet, once you are vitamin B12 deficient it is almost impossible to get yourself back up through traditional oral supplements. The reason for this is that the amount that is taken up on the natural vitamin B12 transporter is very low - around 5 micrograms per dose (even if the dose is 1-2 mg). Your liver stores around 5 milligram, which is less than 10% of your total body stores (so say 50-100 mg). Once you are low your total body stores may be down to around 10 mg and you need to get it back up. So at 5 ug/dose this is going to take you forever. This is why they give you the shots, as there is a much higher level going in. The problem here is that the injected material is rapidly lost from the body, and PA patients need injections every 4-6 weeks, which shows you that even they, with their injections, don't accumulate much. I think that that is why at least one company has developed a slow release topical oil.

      As for the washout period, they recommend up to one month to get you a true value - from the sound of it, it will still be low.

      At the end of the day, most people find that the only real indication is that the symptoms go away. 

      In studies on treatment of deficiency for MS, the only real effect that they got was after one year of treatment. 

      I know of no study where changing diet alone made any difference to elevating the levels, although it possibly would stop you getting worse. One problem with severe B12 and folate deficiency is that it appears to also affect the uptake of nutrients from the gut, so you have to actually sort of got to cure the deficiency before your nutrient uptake becomes normal.

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  • Posted

    Hi Janet.  You have my sympathy.  If you test negative for IFA, then your GP needs to look for another cause of the B12 deficiency rather than just dismiss PA.  I have looked at my two sets of bloods - one present, one a year back - and noted some changes I can explain and some I can't.   But all my levels are at the bottom end of the normal range.  So what MadgeC says makes sense - you won't absorb other nutirients well until your B12 and/or folate level is good.  Beware of false negative and false positive IFA test results, and ask for re-testing, as soon as possible.  Ask for copies of each of your blood test results for the past few years, and plot a graph.  Mark when you had the jabs, supplements and diet changes and see if you can relate those changes to them.  Maybe you will spot something the doctor has missed.  Above all, if the next set of results is not good enough, insist on further investigation.  Best of luck.
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    • Posted

      Hi Janet, Bluemarann is right. Not everyone with PA comes up positive on an IFA test. Other tests that you can do to show that you definitely have deficiency is to have your serum homocyteine and methylmalonic acid levels tested. One or both will be elevated if you have sub-clinical deficiency. You can use these tests to see if you have "active B12" or not, and also to monitor a physiological response to B12 administration.
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    • Posted

      Thanks everyone. My blood test is at the end of the week - fingers crossed something shows up again because I am shattered! I can barely stay awake. I'll keep pushing back until I get answers.
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  • Posted

    Hi Janet, check out thyroiduk website...you will see that a vast number of people with "normal" results actually improve dramatically if given treatment.

    My own gp keeps my thyroxine dose high because he knows that even though it outs my blood tests below the level for treatment that is the only way for me to feel a bit better. Also he reluctantly agreed to allow my B12 injections to be every 10 weeks instaed of every 12 which is the NICE recommended dose.

    Good Luck

    Ell

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  • Posted

    Hi all I was dionosed 18 maths ago but have to battle to keep my injections as they say my levels are ok one GP says it's because I get the meds the other one wants to stop it and he holds the budget ,also I only feel well fora few weeks and go down rapidly after 6-8 weeks but I was told off twice foe asking if I could have it earlier .i am scared it's going to be stopped and belive I am now on 1/2 dose as the file looks smaller and it takes seconds to go in unlike before - same muse giving it any helpfull advice would be gratefull as I am getting very bad leg pains and heart pain at times , breathlessness even turning over in bed sometimes and skin and eyeglasses falling out 

     

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