ckd and vitamin b12 deficiency

[bowler]

does anynone have a b12 deficiency with ckd,

[lillyrae]

Hi bowler. I am waiting for a blood test in 2 weeks time testing for b12 as my muscles are very painful at times.I was in so much pain that I called dr out at 3 in the morning as I couldn't move my right side he said that its to do with the muscles and could be deficiency of b12..I will just wait see what the outcome is..I wish there was something better for all people with ckd as theres no help available for many of us....Lucky we can exchange symptoms on here and chat to people like ourselves.......

[bowler in reply to lillyrae]

Hi there,

Thanks for your reply.

I was tested for b12 and my level was 226, which is within the limit, which is roughly beteen 200- 900 so I was classed as borderline, so my GP was reluctant to treat me, I showed her an e/mail I got from the b12d site. So she started me on the b12 injections, I felt really well on them but unfortunatly I had a bad reaction to them and had to stop.

I understand that some kidney patients do get anemia, although according to my blood test I am not anemic but a little low on the b12, very confusing, as b12 is a form of anemia

My symptoms were/are, lethargy, pins and needles in the arms legs and feet, cramp in my legs, and fingers, to name a few. However these symptoms are also a sign of kidney disease, again all so confusing.

I am waiting for ultrasound on my kidney's due in Aug.[ I am at stage 3 with a level of 39.] Ialso had more blood tests taken so until I have the results from them I dont know wether to start back on the b12 but in tablet form. However I may get a false reading on the b12 test as i have only recently come off the injections, I think the b12 will have to be completely out of my system to see if I am still low of it.

Please go on the " b12d" site it really is informative regarding b12 deficiency.

Good luck

[lillyrae in reply to bowler]

Hi bowler..I will check the site out..I have osteo arthris in feet knees hips hands spine...I have been suffering with pins needles down both legs hands arms..It gets me down sometimes..My dr sent my to nurologist I had some a nerve conduction study at haywards heath and that seemed ok..And also to have m.r.i. on the spine..I got to m.r.i. and couldn't go through with it and apologised to them...Then my gp sent me to another hospital for the m.r.i. I got on the table and couldn't lay flat into much pain so they packed under my back with cushion type things...by the time that was all done as I was going through the m.r.i my face was about 4inches from the machine I couldn't do I apologised again..The man there said I should go to brighton or Croydon to have an open one...I will go and hopefully manage it this time ...I get really confused with it all I don't no if its my arthritis in the spine causeing pins needles or the kidneys.......

[bowler in reply to lillyrae]

Hello lillyrae

I'm so sorry you are having a problem getting your MRI sorted, Perhaps they should have you in hospital overnight, or maybe give you a sedative ?

The pins and needles does sound like a b12 deficiency, but again it could be the kidney's, the problem is there are so many complaints with the same symptoms.

You say you have seen a neurologist regarding the pins and needles, and that was fine, so it could be b12. If so it is easily treated.

I have Giant Cell Arteritis, and Polymyalgia Rheumatica which I take steroids for, I'm sure that over the 14 years I have taken them they have damaged my kidney's.

I like you get confused with all these ailments, especially when we have more than one going on at the same time.

[lillyrae in reply to bowler]

Hi bowler ive had my blood tests back and ive vitamin d defieniency..also b12 I am having an injection once a week for b12 and tablet called folic acid and tablet vitamin d..also my gfr rate has dropped to 53..it was 57gfr when first told of it then went to 60gfr now 53 gfr...my legs feel awfull pins needles through my feet other than that I am feeling better....havnt had m.r.i. yet though....

[bowler in reply to lillyrae]

Hi lillyrae

I'm glad that you have had your results, and are now being treated.

I have several tests this week at the hospital, heart echocardiograph, then I have a monitor fitted for 24 hrs to check my blood pressure, next week I have another monitor fitted to check the heart rate. The following week I have my kidney scan. I think my high blood pressure is affecting the kidney's my GFR is 39. I will be glad to get it all sorted as like you I have awful pins and needles in my legs and feet, and at night my feet feel really hot, however this weather isn't helping. I'm convinced that the pins and needles are due to Vit. b12 deficiency, but I cant go back on the vitamins until after I have had all the tests done.

Do you know what your b12 was, mine was borderline at 226.

Perhaps you will soon be able to have your M R I scan if you feel up to it.

[lillyrae in reply to bowler]

you have a lot to cope with in the next weeks ahead..I don't o what what b12 was just told of it ..its a bit worrying to have gfr drop quite quickly if it does that every time doesn't look good..i did ask the dr is the b12 to do with the kidneys she said no ...I don't no what to think of the drs it seems taboo when you try to talk about the kidneys for some reason I found that with my last gp to..have you found that..Well I hope your tests go ok let me no how you get on ...

[bowler in reply to lillyrae]

I think some Dr's dont have a clue regarding B12 deficiency,

I am reading a book called

called "Could it be B12 " by Sally M Pacholok, very interesting.

I was told that having high blood pressure affects the kidney's. and that kidney patients are prone to anemia. Some Dr's are reluctant to tell us everything, and we have to find out ourselves. Thank God for the internet, and sites like these, so that we can share our experiences.

I will have to wait till after all the tests are done before I see the hospital Dr. again, so I dont know how long that will be ? some time the middle of Aug. I hope. I will let you know how I get on.

[lillyrae in reply to bowler]

yes it is good for this type of site and to share experiences ..Ive been up to drs again this morning my leg has doubled in size ive got ezema odema in one leg and had run out of water pills..she gave me a script for some and asked me to have another blood test in 5 days time as she said they arnt good for kidneys...also ive done 2 urine samples and they both came back as diluted and showed nothing she thinks its strange so have to do another one in the morning which will be the 3rd time..I don't understand that at all....im going to post that now on here to see if anyone else has had that....I said to her well that's good if its showing nothing she said it doesn't work like that.....what that means who nos.....

[Hidden in reply to lillyrae]

Hi, Just thinking about the fact that too little water leads to swollen feet and ankles, so make sure you drink plenty spread out evenly throughout the day not in large amounts which does put strain on the kidneys, etc. Suex