I am reasonably new to posting on here, or am sporadic, but have another question, if you could advise I would be most grateful.
I have been experimenting with varying tests to help make myself better. Using doctors (when I can, but am very disappointed with the service) and other services such as this one here. I have recently started to use vitamin D3 as I have for a very long time been exhausted all of the time, irrational behaviour, panda eyes, strange toilet habits etc. Initially the results were amazing, I felt adrenalized practically, so I am continuing to take, though the 'adrenalized' feeling has dropped away, which I sort of expected once your body got used to taking it, and has settled down to a level.
However I still have a low threshold for bursts of energy if you like, I can manage football twice a week (I know I am lucky, as some can't even do that) but I want more, I appear to have picked up the ability to pick up colds. if I have a mildly late night, I can feel one coming on the next day.
I have read and heard about Vitamin B12 helping people with this kind of thing, plus a number of other issues also. so I am experimenting with it. Problem is I am not certain of the dosage, I am not a doctor, so I wont pretend I know what I am doing. (I don't practice drug taking or anything like that either). I just want to be better at everything I can. I have an excellent diet and eat fruit, nuts, a fair intake of meats and veg often.
I went to the Chemist yesterday and purchased some Vit B12, 50mg per tablet, it states between 1-3 per day, so I am taking three per day, a total 150mg. I feel sure I read somewhere some taking as much as a 1000mg per day, but I could be mistaken.
I would like to know, what others have taken, the dosage and the results, and how long it took to make a difference to how they were feeling.
I woke this morning feeling 'I think' different, though it might be I slept really well for a change....
I have been to the doctors for a number of blood test since being confirmed as coeliac 2yrs ago, confirmations as satisfactory and ok don't cut it with me as that doesn't really tell you anything.
sorry for the waffling nature, but any help would be most appreciated,
thanks,
Mark
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Magicmarker28
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Many people go low in vitamin D in the winter because it is the sunshine vitamin and we absorb it through our skin, some foods are good sources of it D like salmon and egg yolks so this is also useful to know.
Now panda eyes can be a sign of lack of sleep or an undiagnosed medical condition and can be a sign of a kidney issue and or thyroid, both can be associated with CD and my concern would be a kidney issue or lupus which's very difficult to diagnose. And the reason I say concern is if you have lupus and or kidney issues you have to be very careful taking calcium supplements. And you may well find that your D3 supplement uses calcium as a base. I know this because I had a blood test last month and my vit D was 66 instead of above 75 so a supplement was advised and the D3 (1000iu) that I bought is calcium carbonate based (chalk) our bodies have to get rid of the bulk of this calcium carbonate through our kidneys. (thus making them work harder)
I cannot take iron supplements in any shape or form as they give me the runs big time and with others it's constipation so I'd try to improve your B12 levels through diet and I think that you need to have a full blood screen and I say this as I had one last month and I just called at reception and the receptionist printed all the results off for me which was really good and helpful. My red blood count was very very slightly under but it was just flagged up and said normal.
I feel great after only a month on vit D3 but things were only border line for me and I sleep like a baby e.g. 8 or 9 hours most nights. I'm not a vegetarian so it is easy to get plenty of iron from food like a nice big steak.
I think that it is appalling that so many members feel their Dr's are not interested and feel fobbed off it is your body and you know when things are not right so I'm sorry to say this but I think that you definately want to pursue this further with a GP. And I would consider asking your Dr to refer you back to the specialist who diagnosed you as they have seen it all before.
And good luck and i hope that you feel right soon and I'm sorry if it is a bit of a long winded reply.
Did you not have a B12 blood test done at your doctors? If it was within 'normal' levels you may want to consider having a private test done of your 'active' B12 levels which is the important number as there is only a certain percentage of your overall b12 that your body can actually use. Sadly this test is not available on the NHS. have a look at Micki Roses website purehealth, you can have access to lots of different tests on there & there is a huge amount of info, I find the website a little unwieldy but be patient & you will find loads of info, Micki also has a couple of facebook groups where the members are really knowledgeable so well worth linking up to.
Another thing you may find useful, I always make sure I get a print out of all my blood test results from the doctors & keep them on a spreadsheet, so I can keep track of them & make sure there is no swings either way.
I find that it is a personal learning curve, with no guidance from the doctors, for me being a Coeliac & being intolerant to a number of other foods, It is just trying to research things for yourself. My blood tests are always within normal limits, hence why I think there is no further guidance from the doctors - at times I feel like my normal self which is just fab, but then other times I will do an almighty dip, I then cant sleep, I have no energy, I get so depressed, I put on weight, my joints ache, and I have already had about 6 colds this Winter....but luckily my tummy etc is ok. I know that I havent been gluttoned at these times but havent as yet fathomed out what is causing it. However, I also realise I am so lucky that in between these times, I feel normal, which many people havent been able to get back to that stage.
I thought mine was lack of active B12, I did the test but that was fine, albeit my B12 levels are dipping overall, so I do supplement, at the moment I am taking 1000ugs a day to boost it up & after doing that for a couple of months I am going to go back down to a maintenance dose. You can get different strength ones from Natures Best. But that is just me & you will need to feel comfortable about the levels you take, but look on Mickis website for some good info etc.
i have come out of my dip...albeit I have another cold, but only time will tell if it makes a difference overall. If not, then I will be trying to work out what else to do!
Good luck on your journey & don't give up....we must all remember how fab it is feeling well & normal & we must keep striving to get there.
Dear Mark, you need to have a blood test to see wether you need tablets or injections, it all depends on your intrinsic value and wether you can absorb b12. I have tha same symptoms as you and have to have injections, after I had 6 weekly injections I felt so well, It was recommended by my Doctor that I have an Injection every 3 months, which are the guidelines doctors go by, this is not enough for me so I need them every month, you can have Iml or 2 ml some people need them every week, my levels were 183 very low the recommendations are around 500 , which is not enough, other European countries use 900/1000 as average, don't wait B12 can be so debilitating, Ann
B12 if you need it is better dissolved in the mouth, online I have read tat the only way to harm yourself with it is to fill a bath and drown in it. I take Jarrow formula Methyl B12 5000 microgrammes from Amazon. Holland and barrat do a spray that is good but would work out expensive. If B12 helps it is worth getting a copy of old blood tests and checking them out then talking to your GP about possible loading shots. You need to take folic acid as well. There are several types of B12, some work better than others, each person is different.
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