Pernicious Anaemia Society
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Doctors said I'm normal but I feel far from it!

I am going to have a b12 intrinsic blood test by my own accord. Mainly because I feel awful and secondly I'm not convinced my results are normal.

Serum vitamin b12 level 336 (187-883)

Serum folate level 2.5 (3.1-20.5)

Serum ferritin level 45 (20-204)

Vitamin d 38.5 (80-150)

I have also had thyroid results showing

Tsh 2.51 (0.27 - 4.2)

T4 12.3 (12-22)

T3 4.6 (3.1-6.8)

Any recommendation for further tests or advice on how to feel better would be greatly appreciated.

Thanks in advance

S

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You folate is low. I would recommend 400 ug of folic acid a day.

Your B12 looks OK, but you should ask for (or get done privately) an MMA test. Methylmalonic acid is used up in one of the reactions mediated buy B12. If there's not enough B12 getting in the cell then MMA levels will be raised.

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Thank you. Doctor said folate was fine and no further action required.

I will seek mma test. That's great.

Will my intrinsic b12 test indicate whether or not to proceed with mma test?

Thanks

S

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you have a folate deficiency - are you being treated for that?

your vitamin D levels are also very low.

Both of these will cause symptoms similar to B12 deficiency

Your serum B12 level is actually quite well into the range - this doesn't rule out B12 deficiency as a contributor to your symptoms but it is making it less likely.

Assuming that your diet isn't poor in folate would suggest an absorption problem which, even if it hasn't resulted in you being B12 deficient at the moment may well contribute to a B12 deficiency in the future. Serum B12 can be useful for identifying an absorption problem - particularly if you have evidence of a significant downward trend over time. And if you have an absorption problem then it really is just a question of time before you become deficient.

IFA is a test for PA as a specific cause of B12 absorption problems - there are many others. Its also very prone to false negatives - about 50% of the time - so isn't a good test for ruling out PA (though most GPs are unaware of this). Other potential absorption problems would include coeliacs, crohn's, h pylori infection, SIBO,low stomach acidity and a whole raft of drug interactions including metformin and PPIs used to treat acid-reflux (which can be a symptom of low stomach acidity as well as high stomach acidity).

As on TUK - your thyroid panel doesn't look great particularly given your past history - would suggest looking for thyroid antibodies to check if you have hashimotos - another condition that has symptoms that overlap considerably with B12 deficiency.

Personally I'd suggest MMA (and a liver/kidney panel) in relation to B12 rather than IFA at this point.

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SunnyK. Following on from what fbirder says...you also have a vitamin D deficiency to go along with the folate deficiency. Goodness only knows how your GP can have missed these since both levels are below the lowest points in the respective reference ranges. Your GP should be treating these. (They can prescribe higher doses of folic acid, which will raise your folate levels more quickly - or you can buy 400mcg folic acid - but it will take slight longer to raise your levels. And a similar argument applies to the vitamin D).

The value of getting treatment via your GP is that can (should) re-test in about three months to make sure the treatment is effective - and then adjust doses accordingly. And if the treatment is not effective, you can raise the possibility of B12 deficiency again.

The combination of folate and vitamin B deficiency can make you feel very ill indeed, so you may find that your symptoms resolve once these have been treated.

Agree about the MMA test - but it's quite expensive to get done privately and not all GP's do this on the NHS (and some have never heard of it!).

If your GP will not do the MMA test and a private test is beyond your means, you could try treating the known deficiencies first and then return to B12 deficiency as a potential cause if you're no better.

You'll get better advice about the thyroid results if you post them in the thyroid UK forum...folks there are very experienced and much better at interpreting thyroid results and advising about further actions. Here's a link to their forum:

healthunlocked.com/thyroiduk

Good luck and please post again if you're still concerned about B12 deficiency or you need any further support.

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Just a thought....have you taken any supplements with B12 in them as this would make your results look higher as it skews the blood tests? I am suspicious you are in fact low along with everything else.

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No I've not had any supplements. It's been a month off sertraline now and my symptoms have worsened this week. Muscle aches, tired, cramps and pains in stomach. Period heavy. Diarrhea for 3 days. No appetite. This happened last time which is why I ended up on sertraline. This time doctor is going to review thyroid levels to check if sertraline was suppressing tsh and screwing with hormones etc.

So fed up of it all now!

Thanks for all your help

S

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Sorry that you have been so poorly. All the advice above is great so you will have to read up and get more tests of your own done.

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I went to see private doctor today and have got plantar fasciitis. I did not know it was linked to hypothyroidism. So painful. Having a full blood count done again and b12 intrinsic test is I'm so after that then I will be given treatment as I'm clear of sertraline and he's happy to see I'm not clinical depressed but just suffering with symptoms and low levels. Finally someone who understands.

Hope you're doing ok.

S

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SunnyK sorry you have that painful foot condition, I know that's bad, sometimes called policeman's foot in uk from prowling the beat . My pal also has that who also has Hypothyroidism and she gets other lower leg problems . I get carpal tunnel in wrists and joint pains in shoulders. We all seem to show in different areas.

Get well soon.

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Well, that's you and every doctor I have ever mentioned it to!

Mine was not a bad case, but sufficiently unpleasant even at that level. And all the things suggested by professionals were worthless or made it worse.

It resolved with adequate thyroid treatment (just levothyroxine) and use of good quality, soft diabetic insoles. And time.

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