Doctor Appointment Tomorrow. Advice Much Appreciated!!

Hello. l'm a coeliac sufferer with pernicious anaemia living in Canada. l'm heading back (with my battle armour firmly mounted!) to my GP tomorrow. l'm going to ask her to check my iron, folates (both of which she previously said were low but of no concern) as l'm convinced they are affecting my B12 absorption. l'm also going to ask her to check my Vitamin D (which was marked as low back in March and l supplement 3000ui orally, daily (as per GI instructions)) as l know this is important. l've also researched and read that a person should supplement with B6, Vitamin K (to aid absorption), magnesium and potassium.

Can l request a complete vitamin/mineral count?

My next question is what are the healthy/optimum levels for each of these?

l self inject every other day with 1000mcg. l switched from cyano recently to hydroxo but l don't think it's helping as much. Plus, my lower back, spine and shoulders are so sore.

Would methyl be the best as l've read its the most effective for those with neuro symptoms?

Also, what is the test for functional B12 deficiency?

She said my thyroid levels came back fine. Not so sure l trust her diagnosis of the result. What level should thyroid be at?

Should l insist on IV/injectable supplementation due to coeliac malabsorption?

Sorry for the laundry load of questions but you all are fonts of knowledge regarding this disease!

l need as much info as possible as my doctor is completely clueless regarding PA. l'm also trying to see an integrative doctor but the wait time is 6 weeks.

Thanks in advance!

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13 Replies

  • Since you are injecting so frequently, you may need extra potassium. Get it by eating potassium-rich foods like bananas and avocados, and drinking coconut water and orange juice. Doctors don't always warn about the dangers of hypokalemia (low potassium) that can occur but they really ought to!

  • Will probably leave something out but such is life.

    I don't think anyone can actually give you definitive answers on ranges for any minerals and vitamins as we are all different, and it may depend on what other things are going on.

    You may find this link useful in looking at what you want to supplement and how much. It gives recommendations for upper daily supplementation limits but also gives the basis for those recommendations - recommendations are subject to review so you can try searching the site to find if there is any update.

    As a general rule folate levels should be upper half of the range to ensure you have enough to process B12 properly if you have absorption problems.

    And if you have absorption problems for B12 that does make it more likely that you will have other absorption problems ... and coelliacs has the same effect.

    People respond very differently to different formats of B12 - personally I find hydroxo good for neuropsychiatric symtpoms, methyl for regulating sleep and some neuro symptoms ... and I have just started using adenosyl which seems to be very good stiffness in my joints and improves on the improvement in neuro symptoms that I have with methyl.

    In theory methyl and adenosyl should be better than cyano and hydroxo as they are closer to the formats used by the body at the cell level but that doesn't necessarily marry with what people experience - in theory methyl should help me much better with the neuropsychiatric symptoms as it is a form that can cross the membranes that protect the brain but if I just take methyl then my neuropsychiatric problems come back so ... back to all of us being individuals and our bodies working in slightly different ways.

    One good thing about B12 is that you can't overdose on it and although there is a correlation with slightly higher levels of cancer and larger tumours no causal link has been established and it is quite probably that the causal link is having been deficient before supplementation started, which is a known increased cancer risk - and then the B12 promotes the growth of some of the cancer cells resulting in the larger tumours ... mention this as it may be trotted out as a reason for not giving more frequent doses or being concerned about high B12 levels in serum.

    1% of B12 is absorbed outside the ileum which means that in theory it is still possible to flood the gut with B12 and have enough absorbed. This does work with some people (there are studies to back that up - doses over 1mg orally) but it doesn't work for all people ... and if you have other absorption problems then it is quite possible that trying to use other parts of the gut isn't going to be as efficient and so less than 1% is being absorbed that way.

    Some forms of B12 rely on absorption through other membranes - eg sublinguals through the tongue and nasal through the nose and then the skin. Some of this may be then getting through via the gut (obviously not the skin patches unless you are a contortionist :)) but again, these work for some people but not for everyone. I find nasal works very well for me and is very convenient as I can carry spray around with me.

    Functional deficiency would mean looking for antibodies to TCII - there probably is a test but I wouldn't like to say how expensive it is.

    This abstract may be a useful reference

    Sorry but I can't answer in relation to thyroid - you might be better off posting on a thyroid forum, though there are some on here who also have thyroid problems and know a lot more about that than I do.

    It isn't uncommon for doctors to be totally clueless about B12 - even specialists.

    You might find Could it be B12? (Sally Pacholok) or Pernicious Anaemia - the forgotten disease (Martyn Hooper) good reads and may be good resources for your doctor

  • Thank you so much! You are very informed and l truly appreciate you taking the time to respond. Went to my doctor today and pleaded with her for updated blood work. She doesn't regard my PA angle as valid as my B12 level is very good. She actually got quite offended that l wasn't taking her word. While she didn't print off my blood results, she wrote these down:

    June 15 2015: Ferritin 15 (11-145), Haemoglobin 135 (120-160), MCV 95 (80-100)

    July 24 2015: Vitamin B12, 238 (>133), RBC Folate 508 (>829)

    My spine is so sore and feels like its on fire at times. l'm so worried as l have corresponding pins and needles in my extremeties, particularly my feet. Hand and feet tremors too.

    This all started off in mid-July shortly after l had two fillings in my upper jaw. Related or just reaching?

    Am l barking up the wrong tree in terms of it being something else neurological and not PA?

    On hydroxo every other day but only minor improvement until the pain hits again. l'm exhausted and rundown too.

  • WAs nitrous oxide used as an anaesthetic when you had the fillings - if so that may be the cause of your problem as it oxidises B12 and makes it inactive/useless.

    Your folate is low - this means that you can't process B12 - if I was you I would try looking for another GP as this one definitely isn't treating you properly and should really have picked up on the folate - presume you aren't receiving any treatment for that - doing her a disservice if you are - but she doesn't really sound very sympathetic at all.

  • Thanks Gambit. l'm afraid of looking for another doctor and encountering the same barrier. From what l understand, most haven't a clue about PA. l genuinely feel at sea and am starting to think my symptoms are not PA related as the doc insists it can't be that. l'm supplementing D3 and folic acid orally daily but, with my stomach atrophy, l'm not sure how much l'll absorb.

  • There are doctors out there who are aware of B12

    There are also doctors out there who treat their patients like patients rather than just symptoms.

    To be blunt you don't really have much to lose - if the next one turns out to be as bad then you certainly haven't lost anything but if they turn out to know how to treat you like a person then you will at least get some improvement.

    Have you tried talking to local friends and family and finding out if they have any recommendations?

    Possible that the stomach atrophy may not help but it is actually quite localised to a very specific part of your gut and I think D3 and folic are probably absorbed throughout the gut so it should be sufficient.

  • Sound advice! Do you know if supplementing skews blood results? If they artifically raise your levels? l really need blood retests and am concerned that l get back a 'normal' result when in reality it isn't. Are blood results indicative of whats being absorbed on a cellular level? l'm guessing not.

  • Unfortunately test results will be skewed by supplementation - you need to have stopped for at least 3-6 months.

    The serum B12 test looks at all B12 in your blood - not just the active forms that are used at the cellular level.

    Active B12 looks just at the active forms taht are used at the cellular level but doesn't tell you what is actually going on at the cell level.

    Looking for anitibodies to TCII would provide a better guide as to whether there is something going on at the cell level but I really don't know much about the testing for this - it is very specialised and so is probably horrendously expensive.

    There are a couple of tests that can help to clarify if B12 is an issue when results are in the grey areas - this involves looking at a couple of waste products that build up if you don't have sufficient B12 to recycle them - homocysteine and MMA - MMA is most accurate when done as a urine test. I don't think either are routinely available on the NHS.

    I think both PCA and IFA tests are also affected by supplementation - though the period of 'fasting' to get decent results is somewhat shorter than for serum B12 - weeks rather than months.

  • Lots of information! Thank you. l live in Canada and am currently contemplating calling a specialist. Which would be the best qualified to deal with PA? Endocrinologist or Haematologist? l have a GI for coeliac disease. l'm guessing these require a GP referral which mine is not prepared to give as l already asked her.

  • Unfortunately it is a bit hit and miss as B12 cuts across so many things and it doesn't really feature on most medical schools curricula as it is only a vitamin (:)) so you can be lucky and get one who knows something - one who is prepared to listen and find out or one who is ignorant and pig headed and immediately rules out B12 whatever the specialism.

    You could go with the haemo in the hope that they might be interested in BCSH guidelines and learning if they aren't already up on B12 ... or you could go with the Endo on the grounds that they might have an awareness of autoimmune diseases that encompasses B12 but whatever you do there are going to be no guarantees - people have gone private and got no joy either.

    You could try contacting the PAS (know its UK based but they may have contacts at an equivalent organisation in Canada who might be able to make a local recommendation ... or even be able to make a recommendation of someone they have worked with who is based in Canada.

  • Thanks. The PA Society does have a list. However, these doctors are booked to the hilt and many aren't taking new patients. l'm hoping to see an integrative doctor in mid-Sept though l'd like to see someone in the interim. Appreciate the feedback!

  • That ferritin level is very low. Are you taking iron supplements?

  • Hi Laura. l'm not as l have stomach atrophy due to coeliac disease and doubt l'll absorb much. l was taking Floradix liquid iron supplement but l didn't find it much use. Doctor said my ferritin was 'low normal'.

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