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Life With Lupus

Frustrated with vitamin d!


#1

So i was diagnosed last January with vitamin d deficiency during my Johns Hopkins trip.I’ve been on 50,000 units a week of D2.5 since and had to add extra calcium in july 2014 because i was diagnosed with osteopina (a point away from osteoporosis in my hips:/) i was referred to and saw an endocrinologist for the first time ever last Monday to hopefully get a better handle on my rapidly evolving bone disease at 35 years old. . She ordered a fresh vitimin d level and a 24 hour urine collection. The d came tomy email tonight and although my D3 went from 10 to 43 my D2 went from 76 to24 WTF! ! BTW my labs are broken down by D3.25OH,D2 .25OH levels and the total combined level. . My specialist weigh both Ds equally ! I’ve noticed there is always a lot of debate over what is considered a "D"deficiency 8n this site whenever it’s brought up … technical any level, separate and or total less than 50 is an insufficiency and less than 20 is a deficiency. Depending on the underlying issues for why the values are low will dictate the therpy. In my case it’s metabolic bone disease and hopefully nothing else! ???im very curious to see the results of the 24 hour urine collection, hoping my kidneys are good but we’ll see,staying positive :slight_smile: the endo is also reevaluating my bone density scan because she my the t-score page is not the appropriate interpretation for my age and rather a woman over 55… so just by my scores she’s pretty sure I already have osteoporosis but i emailed the complete report with graps and imaging today. … im way to young to use a walker and oxygen but definitely too young for bones and cartilage to be thining sooo rapidly. . I’ll let you know what she says xoxo


#2

Hey,
I just take a 5000ui of D3 everyday, takes longer, but it keeps my numbers to optimum levels. I just buy them at Costco, it is $10 fro 3 months worth. I periodically test the D3 and it has stabilized around 70. Good luck!


#3

You sound like you’re my twin! I’m 35 also and currently waiting to go back to the hospital for phase 2 at 1:30 for my bone scan. My vitamin D was 18, severely deficient, I was diagnosed with Lupus, RA, GERD, IBS and now possibly osteoporosis. My body feels like that of a 90 year old and at times I too feel like I need an assistive device either walker or in extreme cases a wheelchair. My body has deteriorated so quickly in the past 8 years. I was a Certified Nurses Assistant for 14 years. I would care for 12-15 patients in an 8 hour day. I started home health in 08 when I realized I could not handle what I was use too anymore. Then in 2012 I came to the realization I could not even care for one patient. I was the one who needed cared for at that point. I have lost so much to chronic illness. I am now going to be starting the SSD process because I can barely work at all anymore. I currently am self employed and clean houses when I’m able too, but it’s getting to the point I have more bad days than good. I have to accept it’s time for disability. This is not the life I expected to have! I have no children and want nothing more than to have at least one, but honestly I don’t think my body could handle it nor could I care for an infant on my bad days. We have been totally ripped off in life!