Some years ago I was deficient in vit D (that's very normal here in the northern hemisphere where I live). There year later again - so since then I have just been popping vitamin D's on a regular basis.
Last winter I got pretty sick for the first time and a blood test showed B12 deficiency but no anemia - even though I was taking vitamin B supplements. Since then I have tried every sort of Vitamin B12 available - sublingual, patches etc. - and they all feel like amphetamin to me, when I take them. Pretty crazy...
This december a blood test for something else showed low iron (still not anemic at all). So now I am also eating iron.
I can feel it on my energy levels if I don't take my B12 or iron. And I don't understand the reason - why I am deficient and what is the connection to Sjogren's? Is this normal for us?
And should I do anything than just continue with my pills and patches?
Hi Myshkin :)
Welcome to Sjogren's world. Are you taking supplements under a doctors direction or are you self medicating? As you have had the blood tests I assume the doc has talked them over with you.
Sometime absorbtion can be a problem and B12 shots can be more effective than B12 taken orally. Not everyone with SjS develops these deficiencies although I would say VitD deficiency is pretty common but then Sjoggies tend to steer clear of the sun.
If you can sort these deficiencies out I bet you would feel a lot better than you feel right now. It wouldn't clear SjS up - but it would make you feel a bit better.
Take care - Scottie :)
It is actually very normal in most of the population, not just sjogrens & can depend on where you live.
I will continue to take my supplements & encourage you too & get retested for iron & vit. D to make sure you are not overdosing.
Sun helps with vit. d. Other than that a healthy diet will help.
I always get a burst of energy from iron & b12 shot but never notice my vit d
Good luck & welcome
Thanks :) Vitamin D deficiency is more the standard than the exception here where I live far north - the sun is not an option most times, wish it were!
My diagnose is new and so is rheumatologist who is the first to give a darn. But she doesn't seem to care about vitamins. Didn't pay much attention when I mentioned it - the gastromed she sent me to just kept talking about my great blood counts and that I might want to get off iron because of my stomach - which I refused (he was nice though).
My GP doesn't care - but that was before Sjogren's diagnose - so I have been pretty much self medicating up to that point. No one else seemed to want to do the job...
Hi again.
I don't understand a doc not caring about Vit D deficiency because it can cause peripheral neuropathy and either it is needed to metabolise calcium - or the other way around - I can't remember. (I'm not a medic) B12 deficiency can cause extreme fatigue and brain-fog. I know several people who need B12 shots and I can tell when they are due a shot as they get really cognitively impaired before it.
Now you have a dx I would try discussing this again. Sjogren's can not be cured but getting all levels to the optimum so they are not adding to feeling unwell seems important to me.
Good luck. Take care - Scottie :)
Thanks, I will.
But do you know - when you get to the GP and you have that 10 minute regular appointment, after 15 minutes, you're only halfway through your list?
My life is like an endless list of doctors appointments... I actually right now have neuropathies, so now I need to call the reumatologist again - whom I just saw this monday due to my inflamed hip....
And today I went to my GP to talk about my job and my sleep problems, but forgot about vitamins....
Oh and I need to call my eye doctor as well....
(Sorry about the whining - I am still new at this)
I have had similar issues and have had great success with taking betaine hydro-chloric acid supplements, pro-biotics, and switching to a gluten free diet. Apparently gluten really interferes with our ability to digest and absorb nutrients. I am a B-12 junky, lol. I get a montly injection and could feel myself going downhill the week before I was due for my shot. So now I am going the sub-lingaul almost every day and still getting the monthly injection and I feel things are pretty even now. If you are feeling that high, maybe you need to play around with the dosages a bit? Maybe a smaller dose more often or something? I would like to get weekly injections but I can't find anyone to help me with that yet. I love that rush the week after my injection, but yeah, it can be a bit much sometimes.
Violet - you sound just like me. I am a junkie too. Have considered buying injections to do myself. But I do love the patches - have you tried them? Please do! Much better than sublingual.
I have also stopped gluten. My stomach is much better. And started pro-biotic. But I can't figure out when to take probiotics in the day
What is the other? Betaine...?