I have not been tested for sarcoid! So that's one to add to my list! I wanted to ask you, you are so knowledgeable and for the first time in sooo long I have hope, we have been looking and looking and looking ourselves for the last few days. Have you ever heard of something called chiari ? we are also looking for stuff that mimics MS. My head is swimming with reading, but hoping to keep moving forward and keep looking!!!! Thank you so much!
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Originally Posted by mrsD
So the B12 is in the normal range.
Keep an eye on it...as it might be going down, from a higher number. Some drugs do this, and the most common are the acid blocking drugs used for GERD.
They block the absorption of B12 from food, which is acid dependent.
The low D.... were you tested for sarcoidosis? Before raising your D you need to ask the doctor for this. I believe an ACE test is done.
If that is negative, then raising the D will help. The general rule now is 1000IU D3 daily for every 10 points you need to raise.
You are just about at 30, so to reach 50 (the lowest normal), you would need 2000IU D3 daily. This is more useful than the RX they give you. But for people with sarcoid...this is not indicated. The link to Vit D and sarcoid suggests keeping D low.
You know if I were you I'd sit down and carefully make a chart of what you had BEFORE you fell from the horse.
And another chart for what came AFTER.
This might help separate things out if you have more than one issue. All the medications you were given also can contribute to depleted nutrients, and various side effects, like the pancreatitis, etc.
I hope you find some answers soon! It must be horrible getting thru the day, now, for you.
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