Vit D Deficiency...which test?

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MT Lady
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   Posted 7/26/2010 9:44 PM (GMT -6)   
I was told a few years back that I am low in vit D, as many of us fibromites are. I began taking massive doses of prescription D -- from a starting dose of 50,000 units a month up to 300,000 units a month. Then I switched endocrinologists and the one I am seeing now who is an M.D., Ph.D. is telling me that he is doing the Vit D 1,25 dihydroxy blood test, which is not the one considered the "standard of care" but the one he feels is the test that actually tests the amount of D our bodies are absorbing and he's the doctor right? I go along with it, have the blood work done and he just called me (9:30 pm) to tell me that my D is NORMAL, which it has not been. Oh, I forgot to mention he took me off the massive doses of D and for the past 5 months, I've been taking 2,000 mg a day of over the counter D.
Just wondering, anyone else out there have this experience? This doctor told me that so far, every one of his patients that show low D on the other blood test, the vit D 25 hydroxy, he is now retesting with the other test, the vit D 1,25 dihydorxy and every single one of them is coming up normal.
So my question it all of us that are so low, or are we being tested with the wrong test? nono
I have to tell you, lately, I am beginning to question a lot of what doctors have been telling me about FM and how to treat it. I am NOT trying to start trouble, believe me, that is not me.
Well, anyway, just curious if anyone else has any input...thanks so much

Fibromyalgia, Osteoarthritis, scoliosis, back problems, hypothyroidism.

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   Posted 7/26/2010 10:04 PM (GMT -6)   
Hi Miriam!

I'm glad you brought this up as I had no idea what was going on nation wide with vitamin D testing. Seems it's the 'trendy' test to ask for and have done. And the results are not accurate since there doesn't seem to be much standardization. Below are some sites with good information and the first two I've added a paragraph from their site.

Great topic!


Blood tests are available that measure the two forms of vitamin D: 25-hydroxy-vitamin D (circulating) and 1,25-dihydroxyvitamin D (active). Each test is given for specific diagnostic purposes. They can be used to monitor disease state or supplement effects. Whatever test is used, it must be measured and interpreted accurately. Recent studies have shown that some testing methods give inaccurate results (Garland, et. al. Int. J. Epidemiol. 2006 Apr;35(2):217-20) and the mistaken belief that vitamin D levels are normal when in reality they are much lower. Consult with your doctor to determine which test is best for you and investigate which testing method is used.


Some experts, though, are starting to sound alarms about the boom in testing, which has been increasing by 80 to 90 percent per year, with several million people expected to be checked in 2010, according to Mayo Clinic pathologist Ravinder Singh. He says he's concerned about the lack of standardization among testing labs after seeing results vary greatly from lab to lab using the same blood sample. (In a separate matter, Quest Diagnostics, the nation's largest medical laboratory, last year revealed that it provided "questionable" vitamin D level results to thousands of patients that may have indicated levels were higher or lower than they actually were.)

And the site is always good for fairly unbiased information.
If you're going through hell, keep going.

Winston Churchill

(> <) Co-Moderator Fibromyalgia & Chronic Pain Forums
Fibromyalgia, PTSD, UC, Diabetic on insulin, collapsed disk, arthritis scattered around and a few other delights.

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Date Joined Jul 2009
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   Posted 7/27/2010 9:33 AM (GMT -6)   
I guess I never knew there were differant types of vitamin D tests. It made me
curious to see which one my rheumy uses. I dug out my binder with lab rests
results and found I'm tested with the 25-Hydroxy Vitamin D test. I'm now at
a normal level after going through Vitamin D therapy...50,000 IU weekly 6-8
weeks. I take 2000 IU daily now and have maintained a normal level for a year.

Hugs, Robin
Fibromyalgia, MCTD (Lupus, Scleroderma & RA) Raynaud's, Osteoporosis,
Osteoarthritis, Degenerative Disc Disease, Migraines, and Hypertension
Prescription Meds: Savella, Cyclobenzaprine, Methotrexate, Diltiazem, Boniva,
Folic Acid.  OTC Meds: Multi-vitamin. Vit, D, Vitamin B12 & calciim supplements

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   Posted 7/27/2010 10:28 AM (GMT -6)   
I had the 25 hydroxy test...several times.  My doctor keeps checking it.  I was low and just got in the so called normal range.  Normal at the lab my doctor uses is 32-100.  When I hit 33 he said I was in the normal range.  Personally, I want to be around 60!  Why would I be happy with just barely edging over the line?  
I, too, didn't know there were other vitamin D tests out there.  I did a search and came up with this.  There seems to be a couple of tests and which one you get depends on what symptoms you have.
I hope this clears this up a bit.  All I know is once I starte taking the vitamin D3, my pain and fatigue got less.
Forum Moderator/ Fibromyalgia
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7

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Date Joined Aug 2009
Total Posts : 159
   Posted 7/27/2010 10:56 AM (GMT -6)   
A very interesting topic!
I think part of the problem is the reference ranges used.  How do they decide what is NORMAL?  This has been the problem with so many tests.  Some times they will use college students, boys and sometimes girls, test them and figure out the reference ranges.  To my way of thinking that is not a good way to find what is normal.  They need to test many people, all different age ranges and in all parts of the country and in several ranges of health.  Yes, the drs want to know what healthy people's Vit D range should be but how do they know that ALL the college students are healthy?  Have they been out all night partying, up all night studying, just got over a cold etc? 
Personally, I think they need further studies,  preferably double blind.  That way it is more controlled and it needs to be done with several ages and many parts of the country.  I don't know about you but I know most college kid would test considerably different on many kinds of health tests than me, an almost 70 yr old woman who has had fibro for 30 some years.

MT Lady
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   Posted 7/27/2010 1:02 PM (GMT -6)   
Thanks everyone.
From what I gathered, the test that most of you have had, and the one that showed I was severely low (12) was the 25 hydroxy, which is ... or was... considered the "standard of care".... This new doc I am seeing and I want to believe knows his stuff, because he is not only and MD, with a double certification in internal medicine and endocrinology, but he's also a Ph.D., he seems to think it is the other test that shows what normal is. All of his patients that tested low on the 25 hydroxy are now testing NORMAL on this other test. What I fear is that he's telling me I am within normal range, but I'm really low. Low vitamin D is linked to many health issues, including some types of cancer. I guess the answer is if I don't trust him, get another opinion and another blood test? I continue to take the 2,000 mg a day.

Fibromyalgia, Osteoarthritis, scoliosis, back problems, hypothyroidism.

Regular Member

Date Joined Apr 2010
Total Posts : 382
   Posted 7/27/2010 1:20 PM (GMT -6)   
That is the same test I had this winter when they found out my Vit D was low....once I started to take it, the pain lessen.

MT Lady, your right low vit d is linked to autoimmune disease, cancer and other health problems. Studies are showing what an important role Vit D plays in our health.

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Date Joined May 2009
Total Posts : 447
   Posted 7/27/2010 3:06 PM (GMT -6)   
I also had the same test, but my GP told me I was low, but he put the test results up for me to see. The resukts said I was on the high side of normal. My GP wanted me to go on VitD as my results tols him I was low.
This is the same GP who told me that all I needed for pain was to take lots of vitmins and the pain of Fibromyalga. Yep that was his answer to my needing pain relief. If that sounds stupid wait to I tell you about the man who had diabities, he was told the same thing, no need for anything else. I talked to the man in question. I could name dozens of the same type of thing. It became the talk of the town. So I only do what I have always done 10 mins in the sun gives me 1,000 miligrams of vitD that is on my forearms hands and face. I know not everyone can do this in this country where we have so much sun winter and summer there are still people who do not get enough sunshine.
I am one off the lucky one live on 5 acres in the Sunshine stat here in Australia even in Winter we have at present our min is 60 to 70 degrees. I

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Date Joined Jun 2010
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   Posted 7/27/2010 3:11 PM (GMT -6)   
MT Lady said...

I have to tell you, lately, I am beginning to question a lot of what doctors have been telling me about FM and how to treat it. I am NOT trying to start trouble, believe me, that is not me.

Just a quick note before I go look which test they used on me ...

There is nothing wrong with being a trouble maker about our health! I'm thinking maybe we would all be best served if we were big trouble-makers! Seriously.

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Date Joined Jun 2010
Total Posts : 554
   Posted 7/27/2010 3:18 PM (GMT -6)   
Here was mine from January: result 41.1. They told me this is "healthy". I do feel better now than I did years ago when first diagnosed - I wish they had run a test on my d-levels then so I could compare. I take 400 mg per day + drink tons of fortified lactose free full-fat milk daily which has D3. Back when I was first diagnosed I was not on any vitamins, nor had I discovered a lactose free milk that I liked so much.

VITAMIND, 25 HYDROXY 41.1 30 - 80 ng/mL
Reference range: 30.0 to 100.0


<20 ng/mL=Vitamin D deficiency
20-29 ng/mL=Vitamin D insufficiency
30-100 ng/mL=Optimal Vitamin D
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