So my rheumy just answered my email regarding vit d levels and said hold off on anything til next appt
I have been on 50000 iu weekly for 6 months started out at an 8 now just a 12. Is there a reason I am not increasing faster? I know if I could get my vit d levels up I would feel better but it just does not seem to be happening. I have been on dose packs of steroids probably 4-5 times during that 6 month time frame is that why my levels will not go up?
My Vitamin D level was extremely low, my primary suggested that I take a supplement at that time but I said no and she never explained the connection between Vit. D and lupus, or maybe she didn't know. I increased my milk intake and I am one of the lucky lupies that can go in the sun. well.....it did NOTHING. I then started reading up on Vit. D, ( I wish I had seen Ann A's article then) and decided to supplement. At first , just over the counter, Vit D 2000, I did start having better days had my blood level redrawn, it was up but still low. Increased to 5000 per day of OTC supplement for the past two months, my level this month is 30. the low side of normal but I really do feel much better. less muscle and joint pain. I normally take Enbrel 50 weekly and then Naproxen and Skelaxin 3-4 days per week to get me through. Since my level has come up I have not needed the Naproxen or Skelaxin. 2 less drugs that I am putting in my body. My fatigue is less also. I will continue to take Vit. D and hopefully continue to feel much better.
So the reason for writing is to encourage everyone to get their level checked, I ask for my Vit. D and B 12 levels with every blood draw order. I hope it can help .
Thank you Ann you are always such an inspiration
When my Vitimin D is tested it comes back in 3 components. 2 of them are always normal but its my D3 that is always abnormal(10) and won't improve no matter how much D supplements I take:/ I take 50,000UI a week(calciferol) with another 7,000 UI of D3 with calcium and nothing!! My D was tested 2 years ago when I first started getting sick and going to the rheumatologist, all 3 were great. It was tested again when I went to Hopkins last January and my D3 was at 13 so then I started calciferol...just don't understand why my body won't absorb it...now having osteopina everywhere and only a few points away from osteoporosis in the left side of my neck and L1-L5 is terrifying:/ my primary wanted me to start fosamax but my rhuemy doesn't until I have osteoporosis. She said the risk outweigh the benefits for me and because I already have diffused subcondrial sclerosis and have had a bone contusion it's might cause more of those conditions. I have neck xray on Friday because something cracked in the left side of my neck several weeks ago and it been the one injury/pain I've really struggled to live with. It feels like a tendon/ligament issue but I also have constant bone pain in a particular area ... we'll see .. has anyone had issues with your body just not absorbing or responding to a natural vitimin/mineral your deficient in??Any a advice or remedies??xo
I’m not sure drs understand all that much about vitamin d. Mine finally tested after 5 yrs of taking 50,000iu a week. 25 hydroxy total was 40 but d3 was 3. Nothing is being done but I hear d3 is not right. Wound up in ER with spine shifting downward In severe disk loss and pain. Have appt with Ortho fri. Maybe he can shed some light. Anyone know if it’s ok for d3 to be 3 if total is 40?
Just look at my labs from Hopkins and university of Miami ,the name of the lab is “VITAMIN D 25 HYDROXY” … Both results have notes attached stating “abnormal deficiency” and what the level should be… all my abnormal results have notes attached to my online medical files.
D3 ,25- HO value10 and D2,25 -HO value77… my stomach has tolerated Drisdol well and I take the rest of my supplements in gummy form. It’s easy on the stomach and delicious:)
I don’t know, Hopkins and Miami made and still make a deal about me being deficient so guess I’ll have to as my rheumatologist why next time I see her… when I was diagnosed with diffused osteopina my primary had me add the 1000 mlg d3 +calcium a day. I do have a fatty liver and have been wrenching bile for a year, still being monitored for PBC. My mother’s has the same d3 deficiency so im assuming since I already suffer from a bad hand of genetics that my drs take it seriously.
The only thing I can think of is that they are pricribing it based upon labs and symptoms?? In the notes from Hopkins spoke of "D3 and calcium deficiency" and symptoms of diffused subcondrial sclerosis , bone contusion and partil subluxation without injury.. my primary order the bone density shortly after I was hospitalized in late April since I had a separation with my shoulder dislocation..the blood work vitimin D level said 14/abnormal.. but just that 1 number. Then when I saw the hematologist a few weeks after that I got the results is the last post, abnormal D3.. right now im trying to improve my animia and my iron levels. I'll see the hematologist and rheumatologist agin in a few weeks but in the meantime I'll ask dr jenn what she thinks about my percription D supplement. Every day is different for me ..just had a planters plate tear/sprain the ball of my foot this past Saturday just from walking:/ it happens every couple of months but this time was really bad:/ I kna flare has arrived cause now my lungs het tight, I'm weezing and the fatigue is back.. nothing really even improves with me no matter what drugs, supplements , exercise and clean foods I put in my body. Honestly the only treatments that have bought me any relief or improved my life are oxogen and fentanyl... family, friends and my own smi positive outlook have been my real life saver:)
i take Nature's Made Vit. D3 5,000 IU daily and my level is coming up and I feel much better. I also take a sublingual (under the tongue) Vit B12, it is absorbed better and I hate needles so I wouldn't do the shot. My B12 level is normal now, definatly helps with the lupus "fog", big improvement.