Vitamin B12

[Karen_L]

Hi all, I do hope your all fairly well and not in too much pain. :love:

I had a number of bloods done as I have felt really ill over the past few weeks. My husband is really starting to make a noise (giving me a headache in the process,lol). As you know I was dx with FMS last September. :angry:

Anyway I had to go back to the doctors for extra blood tests, aparantley (sorry sp? dreadful fog) there wasn't enough blood in the bottle for the ESR (the bottle was full the first time??) and I also had to have a Vitamin B12 blood test apparantly my 'full blood count' was low and it can be a type of aneamia? :cry:

Have any of you (before dx) been tested for Vitamin B12? if so what was your result (if that's not too personal a question) could it be related to Lupus? I also asked them to do an ANA and Anti/Ro (Vikki's Anti/ro was very high). My husband also told me to demand to see, well every specialist you can think of (rofl) so to start with she has refered me to see an immunologist who Vikki saw before her dx. :woohoo:

Part of me wants them to find something so I can have treatment to make me feel better, but the other half of me doesn't want to know if it is something permanent. I really do need something as I am unable to look after Vikki (hatty) the way I am at the moment, thank god she is well for now!! I keep getting niggly feeling (and I am sure my husband does too) that it isn't FMS that I have but possibly Lupus.
I am feeling so ill at the moment I really can't go on like this. I really am starting to feel like a hyprocondryac, but no matter how hard I try to have a normal day and do my normal duties as a mum, I just can't. :sorry:

[here]

That was the first thing dx when I was first having problems. I too had a low b-12 count and was put on injections. It, for me, was no big deal. You simply take resplacement shots. Because of the way your body process the vitiam, it has to be injections and not oral meds according to my doctor. There has been some discussions on this before in the forums. You might want to do a search and look at other threads.

Goodluck,

J :flowers:

[SueG]

I have never had B12 deficiency ( I have SLE) but my sister who does not have lupus had B12 deficiency and my Mum had both lupus and B12 deficiency!!

SueG

[Lily]

Hi,

I'm glad that things are being looked into Karen. I dont think there's a direct link with Lupus and Vitamin B12 deficiency. I did have a deficiency in teens and had injections for a while but then it was ok and I have no problem now.

As Jamie mentions there is an autoimmune condition called Pernicious Anaemia where the body lacks the intrinsic factor resulting in a Vitamin B12 deficiency which must be treated with injections, usually lifelong. My Aunt has it, none of my relatives have Lupus, except for me, possibly my mother undiagnosed and my daughter has had some signs. I also have Sjogrens which can result in some stomach problems.

But not all here who do have a deficiency lack the intrinsic factor, so I can only assume there's something else at play, like inability to absorb resulting in some nutritional deficiencies etc. and maybe many other factors.

Good luck with your tests and let us know how things go. There's a lot of past conversations on this very subject, some here have a deficiency, many dont.

love
Lily

[Karen_L]

Thank you all for your reply's.

I am still doing a search for the other topics/threads but am still hunting.

Love Karen xx

[Lily]

Hi Karen

The best way to search for this would be to put Vitamin B12 in the subject line, change the forum to all forums and the date to any date.

Here's what you will comeup with :)

http://www.thelupussite.com/forum/index.ph...ite=vitamin+b12 (http://www.thelupussite.com/forum/index.php?act=Search&CODE=show&searchid=d7ff06ace304d2d9bef47c6ac53b18c3&search_in=posts&result_type=topics&highlite=vitamin+b12)

Hope this helps,

love
Lily

[Karen_L]

Hi All,

Lily, thank you for the link, it was very helpful and I spent most of the night going through them.

I have rang the docs this afternoon to see if the other blood tests were back, she said they were and are all negative???mmmm?? the mystery now continues, I wonder why my FBC was high then.

I felt not too bad when I first got up this morning, but it didn't last, I put a load into the washing machine and decide to take my drink outside to sit in the sun and get some fresh air, I lasted 4 mins, too hot, felt sick and heady. I had to come back in to sit in the shade where it was cool. I have then spent most of the day on the sofa (at least I wasn't in bed, should be thankful for small mercies I guess). I couldn't eat my lunch and now that darn pain under my left rib is back again, if I hadn't had my gall bladder out I would think it was that.

I see my GP on Thursday afternoon, hopefully she will be able to shed some light on why my FBC was high, I won't hold my breath though, she blames everything on the Fibro.

Take care everyone

Love Karen xx

[raggedyann1]

Karen,

Do you know if they ran ALL the tests? For me only my ana and the IGM cardiolipin come back positive. And a couple things on my cbc are slightly outside the norms, so I am slightly anemic which is normal with lupus.

I think you are in the UK? you can look at your medical charts in teh UK now. See if the Lupus Coagulants were tested and the complements.

Also remember that sometimes it takes awhile for the bloods to show lupus. also you could have a different Connective Tissue Disease which is why it is important to see a Lupus Qualified Rheumatologist. They can also spot the other ctd's that a gp or run of the mill rheumy would miss.

Take care,
Karen

[Karen_L]

Hi Karen,

Thanks for your reply, I had asked the GP to run an ANA and an Anti/Ro I couldn't remember what other tests as my memory is dreadful (can't even remember to take the teabag out of the mug when I've made it, lol) I know she did do a lot of other test ie Thyroid, cholestoral etc but don't think they were the related tests for Lupus.

I am hoping that the immunologist who I see on the 20th will do more indepth tests as he did for Vikki, he didn't diagnose her but with his tests and the rhuemy's tests they both agreed it was Lupus, but we still insisted on a second opinion that's how she goes to the Lupus clinic in London.

My husband will be taking her in July and I think he is going to ask them if they would be willing to see me too. I won't be able to go that day as we are going on holiday the next day and the journey to London wipes me out, I will end up in bed for the following few days.

It will be interesting to see what my GP has to say on Thursday, I can't see how she can tell me that everything is ok if some of my CBC where high thus making the hospital request a Vitamin B12 to be done.

I know it sounds strange, I don't feel as apprehensive as I did when we were trying to find out what was wrong with Vikki, I think when its your child you have a different sense of responsibility and worry. I do know that if I have got lupus the correct medication will make a difference. At the moment I take a muscle relaxant/anti-depressant on a night with tramadol and during the day I take co-dydramol which to be honest isn't making any difference at all to me, these are what they treat Fibro with.

It is strange, and I am not sure if it is all in my mind, but I have a strong gut feeling that there is more to it than Fibro the same as when they first dx Vikki with ME I knew then that it wasn't and continued the fight.

Sorry for the ramble, I have been trying to do a search on the net to see what other reason there could be for a raised CBC but not geting very far. I also have that horrid pain in my rib, it was more a dull ache as though something was stuck last night but tonight it is a stronger pain and I can't get comfy. Looks like I may have another sleepless night, Oh well the joys of life eh?

Take care

Love Karen xx

[MBarbee]

Hi,

I thought this thread was interesting. I too have a low normal B12 and a positive ANA. I have just been diagnosed with fibromyalgia and had tons of blood tests done for Lupus. My doctor said that my diagnoses was fibro with possible lupus. She said they often go hand in hand. I also have the pain in my left upper abdomen. Kind of like under my ribs. When I asked the doctor about it she said it was my stomach and put me on some acid reducers. She said if it didn't get better in a week that I needed to get an ultrasound done of my abdomen. Well, it has been two weeks and it is still there. NOt as often but still there. It comes and goes. I am going to talk to the rheumatologist about it when I go back for the results of all my blood work.
Today has been a good day. NOt a lot of pain and more energy. I was able to do laundry, vacuum and do the dishes. That is a good day for me.

Mary Ann :wave:

[dudley]

Hi karen

Yes I have low b12. my body can not absorb it. Was Dx whith Chrons at 28- Iam know 46. Back then the called it illitus (sp) was informed when I was hospitalized at 32 that I only had 25% of b-12 that was need at the minimun. Dx from that time was fibro. I now also have Sle plus a few other autoimmue diseases.

Even though my Chron's is in remission and has been for quite a few years and I get b-12 injections it is not where it should be. I now self inject every other week.

Does not hurt.

See if you have Pernicious Anaemia where the body lacks the intrinsic factor resulting in a Vitamin B12 deficiency as recommed by Karen.

Also ask them to check for vit d defiency and calcium levels. Have they done a full lupus work up on you?

Don't be scared about what I have just said. If this is the worst thing you every get you are so lucky (meaning a bad cold can be worse). just keep asking doc's to do a b-12 level checks. this is not a standard test. b-12 CAN BE OFF FOR SOME MANY DIFFERNT REASONS AND IS SO EASILY CORRECTED

good luck and contact be anytime

eLAINE - fYI i GUESS THAT YOU HAVE NOTICED THAT I HAVE HORRIBLE SPELLER

[Lily]

Hi Karen,

Yes I'd be inclined to ask to see what was tested when you next see the doc, have her go through the results with you. You can then compare that with what would have been a full lupus panel.

I'm a bit confused ? Are you saying your full blood count was low in the first post? There are several components to the full blood count, if she was thinking anaemia then she probably meant the red cells. You also mentioned pain under your left rib. Of course your doctor will have to put all this together for you but I would just like to mention that my red cells are often just a little low and it's from Lupus. It's not enough for them to worry about but I have to tell you before I had a hysterectomy no-one investigated it properly - they ALWAYS said it was my periods causing this :wacko: When I still had it after the op and was quite ill they then had to investigate further. The pain under the left rib, ask her if it's in your spleen area - that's where red bloods cells are active and it's also a big part of the lymph system. So when I get swollen glands elsewhere from Lupus, I sometimes get a feeling of fullness and some swelling there too. Just a thought and may be totally different to whats going on with you.

I think if you possibly can get in to see the Immunologist that Vicki saw, he will take you seriously and investigate thoroughly. I was diagnosed and am still treated by my Immunologist, although I did see a Rheumy for a second opinion once who said for now you have Fibro ;) even though he didnt check my tender points and I had far more going on. But he was helpful in documenting my symptoms and he liased with the Immuno. We got there in the end.

In your heart of hearts you know something more is going on and yes whilst we pull out all stops when its our kids, make sure you give yourself the same courtesy - you deserve it Karen :flowers:

Good luck and keep us updated.

love
Lily

[Karen_L]

Hi Guys, when I first was given the CBC results I thought I was told they were low, but when I queried it later I was told that some of the readings were high (don't know which ones but will ask on Thursday). The B12 has come back normal.

Having to give myself an injection doesn't worry me in the least, I think the worst thing (that I am over now) is having to inject Vikki once a week with the methatrexate.

Thanks Lily, I will ask my GP to go through the tests that were done. The pain in my rib has eased off today although I am still aware of it when I bend forward. I have had this before on and off for a few months, but you know how the saying goes 'out of sight (not hurting) out of mind'.

I will let you all know how I get on at the GP's on Thursday afternoon, fingers crossed she will have some answers (although not holding my breath) wish me luck!

Love Karen xx

[Karen_L]

Hi all,

It turns out that my red blood cells were slightly large. All other test (just the normal GP test) were normal, I asked to have the ANA done and that just said normal, no titre readings and no others for lupus.

I got up this morning feeling really ill and had a swelling on the front right side of my neck. By the time I went to see the GP this afternoon you couldn't see the swelling but on examination luckily she could feel it and said it was slightly to the right of my thyriod, but doesn't know why it would be swollen. I seem to be hitting a brick wall at the moment. I still feel really ill and unfortunately got upset in the GP's and burst into tears, there wa a dreadful silence and I felt really stupid, but every time I tried to speak I burst into tears again, then she asked me how my mood was, dooh!

I had to get my husband to come home a day early, he was working away in Bedford, he managed to get home in time to come to the GP's with me, he has told her just how ill I am (I was starting to feel as though she might think I exagerate a bit) any way he has got her to do a referal to see a neurologist as well as an immunologist, surely one of these should have some answers.

I hope you are all feeling well, I know Vikki is extremely well at the moment, I don't know what I would do without her, she even made me a baguette for lunch and brought it up to bed for me, I didn't want to eat but made a huge effort as she had made it and managed to eat half of it.

Take care all of you

Love Karen xx

[Lily]

(((((((((Karen)))))))))

:hugbetter:

I'm glad that you now have appointments with a Neurologist and an Immunologist :thumbs:

Vicki is a sweetie,what would we do without daughters :D :)

Take care Karen and go easy on yourself, I hope your appointments come around soon.

love
Lily