Bit of a long story but any help would be appreciated

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Sorry for the long post but here goes. I've been living in France for 11 years. I the uk 2 years before this I was given a routine blood test when they were investigating IBS. My B12 was found to be really low & I was put on injections which I had been having for 2 years before coming here. My French doctor here said that in France they don't give B12 injections & that this was very old fashioned & something that he hadn't seen since being in med school many moons ago. He sent me for a blood test to see what my levels were and they came back fine which I realise now that of course they would because I had been getting injections in the uk for 2 years. Any way he said I didn't need any treatment & I though great coz I hated having injections anyway. Years go by and as I was veggie and was getting many of the symptoms on B12 def I decided to start taking a Tesco multi vitamin (one a day). Went for another blood test coz still getting symptoms and my b12 level came back at 2600. Doc told me to stop taking the multi vit, I think he thought I was taking them by the bucket load. I did a bit of searching & found out about the further tests you can have to see if you are not able to use b12 which I thought would maybe explain why my level was so high after taking just 1 multi vitamin a day & me still having symptoms. Doc didn't have a clue about these tests and said they weren't available in france as far as he knew but would refer me to a consultant at the hospital. Eventually got an appointment after they had passed me from pillar to post coz they didn't even know which type of doctor I should be seeing. The consultant was as much use as a choc fireguard and also didn't know of these tests and said as far as he knew they weren't available in France and I should just not take any more multi vitamins. He sent me for another blood test as some of the symptoms I had would indicate Sjorgrens Syndrome. This came back positive so they put the dry mouth, eyes, & loads of other things down to that but not the tiredness and feeling rundown all the time etc. He just told me to get tested for b12 every 6 months to keep a check on things which I have been doing as I'm now vegan so even more important I would think & to be honest haven't felt right for years. These tests have come back after the 2600 one showing 800 odd, 500 odd, 360, 300 & now the last one a week ago 190 which is on the low side but still within the lab range here of 179-800 so the doc is not going to do anything. I have done a bit of searching and ordered some under the tongue tablets, the Methylcobalamine ones which I've read are the ones that can be absorbed the best if you've got a problem along with the folic acid ones that I've read you need to help you absorb them. I don't know if I'm doing the right thing though with what the docs have said because if my next blood test is through the roof like it was last time after taking them they wont be very happy with me will they but there again I can't go on feeling like this as it's really effecting my life because I just feel like crap all the time. The other things on this last blood test are all low but just within the lab ranges but iron and vit d have been low a few times on the others which he's given me tablets and drops for. As I said so sorry for going on but I'm just so fed up with it all & would appreciate anything anyone can offer. Thanks so much!

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  • Posted

    Hello Gill, 

    Do your doctors know you are vegan? You will not be eating enough natural sources of B12 as it is mainly found in meat fish and eggs. Also, you had been treated in the U.K. for B12 deficiency, it seems odd that they just chose to ignore that as being "old fashioned"!

    Doctors here are becoming better informed about how much damage can be caused by low B12, it is actually more of a pro-hormone than a vitamin, and vital for many cellular processes in the body. Most importantly the nerves, which can begin to lose the protective myelin sheath. 

    The fact that you are low in other vitamins shows that there is a definite absorption issue, it seems strange they will treat some but not the B12. Only just being in range, doesn't mean all is well. You could have it in your blood, but it's failing to reach your cells.

    The specialist you saw knew nothing about testing for intrinsic factor, or homocysteine levels, as an aid to diagnosing B12 deficiency?

    I think you must consider self treatment if they are refusing point blank to help, and indeed seem totally unaware of the problem. Sublingual tablets for methylcobalamin would be a good start but I can't tell you how to explain future blood test results to your doctor I'm afraid. 

    Some people do self inject when they have no other alternative, but I would try the sublingual tablets first. 

    Is your stomach issue of IBS still ongoing? This maybe the reason you are becoming low in vitamins generally. 

    Best wishes 

    Marion 

     

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    • Posted

      Hi Marion

      ?Thanks so much for your reply. Yes the doctor knows I am vegan and to be honest I think he puts my low levels in everything down to that. He seems only prepared to treat anything that is outside the lab levels and even then sometimes he doesn't. I've had vit d come back low and he's just said no need for anything as summer's coming and also no need for iron tablets when that was just a bit low. The consultant in the hospital I think thought the high level of B12 was because I was taking multi vitamins by the bucket load even though I was only taking the 1 a day and just told me to stop them. He was supposed to be phoning his friend who he said lectured in B12 (which he did while we were there but got no answer) and contacting me if he had anything else to add. Never did hear anything back from him. I still do have some problems with the IBS but it's nothing like it used to be and it does seem to have improved since becoming veggie & now vegan. I think I am going to have to treat myself but am not sure whether I should hang on as best I can for another few months and go for another blood test to see if the level has dropped enough below the lab norms so the doc has to do something or just start taking the tablets when they arrive. The problem is apart from all the other feeling like crap symptoms I'm now starting to get tingly hands and I just worry about the damage I might be doing to myself leaving it & it doesn't help trying to deal with all this when you've got such a fuzzy head.

      Thanks again for your time.

      Gill

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    • Posted

      Hi again Gill, 

      How long will you have to wait for the next lot of blood testing? I feel sure your levels will be low enough by then to need treatment, plus your symptoms will have increased. Have a look at The Pernicious Anaemia Society website for a full symptom list. This could provide you with more details to improve your argument for treatment. 

      My symptoms before treatment were pins and needles, numbness, loss of balance, total exhaustion, fuzzy head ( to the point I couldn't remember even simple things), aches and pains, blurred vision, and tinnitus. My brain was so fuzzy I had to take my husband with me to the doctor to help explain what was going on. Thankfully I was started on injections when my level of B12 was 176, once you are on treatment they say future blood testing isn't required. I hope you will get the help you need. 

       

      Very best wishes

      Marion 

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    • Posted

      Hi Marion

      ? It will be another 6 months before my next blood test so maybe I will last out till then or maybe I'll go back to the doctors earlier, maybe in 3 months time and ask for another because I'm concerned with my level only just being within range this last time. If I get much worse and I don't get any help from the doctor I suppose I'll just have to start on the tablets. It shouldn't be like this should it and a lot to cope with when you feel so crap. You would have thought he would have looked into it more with me being found to be deficient in the uk and on injections before coming here. 

      ?Thanks again for listening and your help.

      Take care

      Gill

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    • Posted

      Hi Gill, 

      Definitely go back in three months, don't leave it for six months. I'm sure your symptoms will be pushing you towards that. If you were in the U.K. I could suggest you quote the guidelines for treatment here. Is there a possibility that there are treatment guidelines that exist for doctors in France? If there are is there anyway you could find out what they say? I can't believe that they can be so unaware of the illness and dangers caused by Low B12. 

      Very best wishes

      Marion 

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  • Posted

    I'm not sure whether this is available in France but you could always ask for an MMA test.

    Methylmalonic acid is a chemical used up in one of the cellular reactions mediated by B12. If there's not enough B12 in the cell then MMA levels will rise. If they're not high then it means your cellular levels of B12 are OK. High levels of plasma MMA (>0.75umol/L0 almost invariably indicate cobamalin deficiency.

    Being vegan/vegetarian means you will need B12 supplementation of one form or another for the rest of your life and if you have an absorption problem with you stomach (I note you have IBS) or are on medications which affect B12 absorption such as PPIs, Antacids, antibiotics, some antidepressants and contraceptive pills then it will have to be via injections.

    I'm not a medically trained person but I've had P.A. for over 45 years and I wish you well.

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    • Posted

      Hi Clive

      ?Thanks for your reply. I've been asking about these further tests here for 2 years, since my blood test came back at 2600 after taking 1 multi vitamin a day and with being vegan I wasn't getting much from anywhere else. No luck whatsoever and don't really know if they're just not available here or my doctor and the consultant at the hospital didn't think I needed them because they just thought I'd been popping vitamin pills by the bucket load. I really am so fed up with it and to think I might have not have been getting the proper treatment for 11 years. Maybe I will try and contact some labs here & find out if they do them or maybe I'll contact St Thomas's hospital and find out about getting one done there. The problem I've got is that even if I get one done in the UK the doctor here will probably just take no notice of it because it's been done in the UK  and not France. It's a bit like that here & you can just get the shrug a lot of the time. Maybe if I don't get anywhere with these tests I will just have to wait a few months and have another blood test and if my level is below the lab range just maybe the doctor will do something.

      Cheers & thanks again

      Gill

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    • Posted

      A little update. After being told by my doctor and the consultant at the hospital that these MMA etc tests weren't available in France I decided to take the bull by the horns and contact the lab here myself. I sent them an email asking if they did the MMA test and got an email back saying yes no problem and what's more it's covered on the health insurance here so no need to pay out for it. Couldn't believe it! I made an appointment with the doctor and went armed with copies of the labs email and he wrote out a prescription for it but he didn't have a clue what it was and had never heard anything about it. Anyway I've now been for the test and have to wait a month for the results which is a bit weird as blood test results usually come back here quite quickly but I think they have to send it away somewhere. So I've got a month to wait till hopefully they will do something. I had ordered some under the tongue Meth............... tablets & folic acid ones and they have arrived but I don't want to take them yet (although I do if you know what I mean) in case they lose my results or something & I've got to go for another test. I suppose I've waited all this time so another month is nothing. Thanks for your help and I'll let you know the results when I get them.

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    • Posted

      "Fingers crossed" then Gill only it makes typing more difficult smile

      Sadly it would appear that your doctor may not understand the results when they do come back.

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  • Posted

    Hi Clive, Marion & everyone else who have been kind enough to read my post. I've just received my blood MMA test results. It's 0.8 and the range they've given is 0 - 0.6. They've added the conclusion of vitamin B12 deficiency? but it's the ? bit that's worrying me a bit. The last 2 weeks while I've been waiting for them have been pretty horrible to be honest because I've had constant tingly hands & feet and dizzy spells as well as foggy head, blurred vision, feeling like I'm not really here and the usual feeling knackered and no good for anything. Do you think I should push for injections again like I was given in the uk 11 years ago or do you think it would be worth trying tablets if he offers them? I really hate injections but if it means feeling better I would defo rather have them obviously. Next thing is to get an appointment with the doc I suppose and hopefully not have too much of a battle on my hands. Any advice really appreciated.

    Thanks

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    • Posted

      As I said earlier high levels of plasma MMA (>0.75umol/L0 almost invariably indicate cobamalin deficiency.and yours is 0,8

      You need B12 injections and just in case you have an absorption problem have your serum Folate tested as this and B12 help your iron to make red blood cells and to function properly in your body.

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  • Posted

    Hello again Gill, I think the injections would work more speedily than tablets, that’s assuming the tablets would work at all. From the sound of your symptoms you need to get something happening as quickly as possible. I hope your doctor will take notice of the MMA result too?

    Best wishes

    Marion  

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  • Posted

    Thanks Marion & Clive. I've just phoned the doctors up and have been told they will look into what treatment they can offer me here. I'm not too happy because she started mentioning tablets and I would have thought that they would have looked into the treatment options here before now but there you go.. I explained the treatment procedure in the uk and they've asked me the how much of the stuff  has to be injected for both hydroxocobalomin or cynanocobalamin (hope I've spelt those right). I haven't got a clue and can't remember what I was given in the uk coz the nurse in the doctors surgery just did it. I don't even know which type I was given. Could anyone help with how much should be given of both types and if more is given with the loading doses. I don't even know if they will agree to the injections and I must admit something doesn't feel right about me being asked how much of the stuff they will need to inject if they do. This is no good for someone with a fuzzy head that doesn't know her arse from her elbow at the moment. She also said if I phone with the amounts this afternoon they would be able to look into it next week! I think I'll be starting on the under the tongue tablets I've bought before then as couldn't sleep a wink last night with tingles and a mega achy arm feeling like it was dropping off.

    Thanks loads for your help again.

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    • Posted

      I have cyanocobamalin B12 1mg injections because that was the only type available 46 years ago when I was diagnosed with P.A. Maintenance doses are every four weeks for cyano and 12 weeks for the hydroxocobamalin.  The amount of B12 "content" is the same, just that it is reckoned that the hydroxo "stays in the blood stream longer  but when I was tried on it I couldn't "last" the three months and so have continued on the the cyano.

      I hope you get sorted soon.

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  • Posted

    Hi Gill, 

    The initial treatment in the UK is six injections of 1mg of hydroxocobalamin over a fortnight, Clive has the other type I think, cyanocobalamin. I imagine the dose will be the same. Then, depending on the symptoms, you either continue with a dose every other day until the symptoms subside, or go onto a maintenance dose of one injection every two or every three months. The injections are usually given as intramuscular, I have mine in the top of my arm, alternating arms for each injection. 

    Sometimes the symptoms worsen as the injections begin to work, re-awakening the nerve endings, this is normal. The injections may also sting a bit. 

    I hope your treatment will work and that you will begin to feel much better. It does take a time for the full benefits to be felt, especially as you have been a long time without treatment.

    Best wishes

    Marion 

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