Bit of a long story but any help would be appreciated
Posted , 4 users are following.
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!
1 like, 23 replies
gill52777
Posted
Another little update. Went to the docs this morning and have finally been prescribed injections. They give cyna ones here not hydro so that's what I'm having. 10 of them, 1 every other day and then 1 a month. The nurse comes out to your house here to give them which is good as I couldn't imagine having to do them myself and she's just been to give my 1st one & I didn't even feel it. I also mentioned to the doc about keeping a check on my folate level (thanks Clive) so he's going to do that and the nurse is going to take some blood for it when she comes on Friday. I feel a bit more tingly than normal after it but feel so much better that hopefully I'm finally going to be sorted. Thanks again so much for all your help without which I probably wouldn't have had the balls or the energy to get this on the way to being sorted. xx
clivealive gill52777
Posted
That's brilliant news Gill.
Being Vegan you should now be getting cyanocobamalin B12 injections for life.
Again, being Vegan, as long as you don't have an absorption problem and your diet includes plenty of leafy green vegetables, sprouts, broccoli, asparagus, spinach, peas beans etc your Folate should be naturally OK but it's good you are having it tested.
Be aware that some symptoms you have now may appear to get worse before they get better once the loading doses start. This is not uncommon and is a sign that the B12 is repairing damage to the nerve endings caused by the deficiency.
Take care now
gill52777 clivealive
Posted
Thanks Clive. Not sure if the reason is because I'm vegan because I wasn't even veggie when I was diagnosed with it in the UK 11 years ago although I never did eat loads of meat. Anyway at least they're checking it out so that's good. I'm a happy bunny though coz the injection I've just had here was defo less painful than the ones I had in the uk but they did them in the top of my arm in the UK and this one was in my bum where there's plenty of padding so maybe that's the reason. Poor nurse though! xx
clivealive gill52777
Posted
Treatment for PA and non-dietary vitamin B12 deficiency is virtually the same."
The symptoms of PA are the symptoms of the B12 deficiency that it causes. If the cause isn't dietary then it is an absorption problem so you need to find another way of replenishing B12 initially. Most absorption problems aren't treatable but a few are - notably h pylori infection. Yours, as you say. wasn't dietary in the beginning, but as you are now Vegan it is dietary and injections are for life.
I've had well over six hundred cyanocobamalin injections and every one in my upper arm - At my age of 76 I'm not letting any nurse loose on my bottom
gill52777
Posted
Hi again & thanks so much for all your help with this. I get my 5th loading injection tonight but as yet don't really feel much better. In fact like you say things have been a bit worse with regards to pins & needles etc. I do realise that this is maybe to be expected so I'll just hang on in there & hope things improve in time. Could I just ask something else please. My folate test came back 7.4 (range of 4.8-19) which I thought would have been a bit higher with me being vegan & my diet being mainly veggies so do you think I need to take a supplement. I haven't heard anything from the doc so he must think it's ok coz it's in range but just thought it would be worth asking you what you think. Thanks again for all your help which is so much appreciated..
clivealive gill52777
Posted
Hi Gill,
It is important that your Folate level is monitored as this is essential to process the B12 you are having injected and it will get used in the process.
There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance. Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body.
I posted earlier "Again, being Vegan, as long as you don't have an absorption problem and your diet includes plenty of leafy green vegetables, sprouts, broccoli, asparagus, spinach, peas beans etc your Folate should be naturally OK" but your level at 7.4 is not exactly very high so I don't think that you will do any harm to supplement with folic acid for three months and get tested again.
Personally I have taken 1 – Folic Acid 400µg tablet every day for more years than I can remember and this can be bought cheaply over the counter at any pharmacy or supermarket and this should be sufficient as a "maintenance dose"
Please remember I'm not a medically trained person just someone who has struggled with P.A. for many years
gill52777
Posted
Hi it's me again. I've now had the last of my 13 loading injections last Thursday and now it's monthly, the next due 15th Dec. The thing is that although the pins & needles and arm ache thing seem to have improved the tiredness and feeling crap hasn't. In fact I've been more tired and falling asleep watching the tv which I have never done. I know you say it can take a good while sometimes before you feel so much better so I suppose what I'm asking is it normal for it to take this long after so many loading injections . I think I was hoping for a miracle fix which obviously was not going to happen. I'm now worrying a bit that it's not just the b12 thing causing the problems as I've also got Sjogrens Syndrome and wondering if some of them are because of that. Thanks again for all your help.
clivealive gill52777
Posted
It is not uncommon for some symptoms to appear to get worse before they get better as the B12 starts repairing the damage done to your nervous system and your brain starts getting multiple messages from part of the body it had "forgotten about" or lost contact with.
I sometimes liken it to a badly tuned radio on which you have turned the volume up high trying to catch the programme you want when all of a sudden the signal comes in loud and clear and the blast nearly deafens you.
A lot will depend on the severity and longevity of your B12 deficiency as to how long before there is no further improvement or recovery. Some symptoms will "disappear" quite quickly whereas others may take months or even years. There is no set timescale as we are all different.
Sadly tiredness is par for the course with me too, but maybe it's as much down to my age as anything else.
Don't forget to have your Folate level monitored.
Symptoms of a folate deficiency can include:
symptoms related to anaemia
reduced sense of taste
diarrhoea
numbness and tingling in the feet and hands
muscle weakness
depression
I am not a medically trained person and know nothing about Sjogrens Syndrome .