You need your 'serum 1,25 Dihydroxyvitamin D' and your 'serum 25 Hydroxyvitamin D' measured. You must have both data values to get a good picture of Th1 disease inflammatory activity.
Your Doctor (or your local blood lab) draws blood for the tests. They have to send the blood out to a specialized lab who actually do the testing of your blood sample. The following webpages describe how to draw the blood if the sample is to be sent to the various US Labs. We have removed Labcorp as of March 2004, as Labcorp does not insist that blood for the 1,25-D test be frozen before shipment, and we are seeing to many bad assay values from Labcorp. Please ask Doc to designate a different lab.Click here to open up the page describing the 1,25-dihydroxyvitamin-D test at Mayo, then print it
If Doc is sending it to Specialty Labs in Santa Monica, California,
Click here to get the Specialty Labs Panel information to print out for your doctor.
If Doc is sending it to
Quest Diagnositics, then
Click here to get the Quest Diagnostics Panel information to print out for your doctor.
It is usually safest to print out all these pages from all labs unless you know exactly which lab your Doctor prefers.
Make sure you get a copy of the raw data results. It is not good enough to be told if your levels are "normal" or not. You need the actual data numbers to understand what the data actually means when you later discuss the results with your doctor. File the results away, they may come in useful later on.
This page from the Merck manual tells Doc that the maximum value for
1,25-D is 45 pg/ml. Print it, because he/she probably needs to know
that (many of the labs print ridiculous ranges on their lab results
I personally recommnd that Sarc patients should try to get their 1,25-D between 20 and 25 pg/ml to minimize symptoms, particularly to minimize the 'neuro' symptoms.
describes how Doc can calculate the D-Ratio
Print it to discuss with him/her (and please discuss it on SarcInfo.com)
Your doctor must not panic if he/she finds your Calcium/Vitamin D3 levels do not make sense. Typically the 25-hydroxyvitamin-D is at the low end of normal (<25) and the 1,25-dihydroxyvitamin-D will be normal to high (>29). Some doctors may want to prescribe a supplement when they see the low 25-hydroxyvitamin-D value that most sarcoidosis patients have.
Do not allow Doctor to prescribe Vit D supplementation until after you have had a chance to correlate all the data together and discuss what to do. Vitamin D supplementation can be dangerous for a sarcoidosis patient. Your level of active hormone is coming from the inflammatory macrophages. You have to beat the inflammation before these D values will return to normal
doctor (or HMO) believes that the
tests cannot be justified, point out that, as a sarcoid patient,
you are at extreme risk of kidney damage, and that the FDA has approved
1,25-dihydroxyvitamin D for testing kidney function.
Both these tests are also approved for investigation of the patient's risk of osteporosis, so anyone who has been on Prednisone ought to be able to have them done.
A lab in Canada that can do the 1,25-D and 25-D tests is "Laboratoire Médical Biron" in Quebec, (514)866-6146 or 1-800-463-7374. The 25-D test costs approx $85ca and 1,25-D approx $115ca. I am sure other labs do it as well.
Here is a Lab in the UK that can measure 1,25-D
Here is a Lab in Sweden that can measure 1,25-D
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