low level of vit D3

I have been chronically low on vitamin D most of my adult life and while that may have some association to my developing lung disease I do not think it is the result of my current lung disease as before my recent BE/MAI diagnosis, I had no history of lung disease. You haven’t given the measurement unit for your numbers so it is hard to know why it is being considered insufficient. I will say I was on large dose vitamin d3 supplements for a few years which significantly raised my phosphorus levels and I was uncomfortable with the potential long term implications of that so am now on lower doses, 2000 ml per day. I will say, it doesn’t do much to raise my vitamin d levels. Keep in mind that for most of us winter time presents our lowest levels of vitamin d due to diminished time in sun. So it may be worth noting what time of year you are testing as that might explain some variation. Also, if you are ruthless with wearing sunscreen (as I am bc skin cancer runs in my family) note you will not absorb vitamin d from the sun so you will need strategies to address, as with many things, balancing various risks. I have not yet seen a NTM specialist but my pulmonologist and ID doctor have said nothing to me about my vitamin d levels, which if I am reading your numbers correctly are much lower than yours though technically “normal” based on lab ranges. I have read that it is preferable to have higher d levels with lung disease so I do find it strange that no one has raised with me since the BE/MAC diagnosis and I do intend to raise with NJH on my visit. Unfortunately I know from experience it is not a value I have had success in substantially raising so not sure what they would recommend as mega-dosing is not something I am comfortable with given past experiences.

Thank you for sharing all this. Yes it’s winter and I live in the Chicago area so even if I take a walk outside I am bundled up plus wearing a mask from cold air. My September numbers were better so I guess I will wait for spring to come and see the levels then.

When I first tested D levels many years ago they were low, around 30 and my immunity was very poor as a result. It was during that time that I kept getting one chest cold after another which likely led to Bronchiectasis. I tried a D3 supplement and after some months re tested. No improvement. Then I got a spray in the mouth D3 and when I next retested my levels had gone up. I continue to use either a spray or a liposomal D3. When I was using 4000 iu a day my levels went up to 82 which is actually good if not a bit high. I cut back and use 2000 to 3000 and recently tested 64. So anyway you need a supplement you can absorb. And sitting in the sun if you are older may not produce much D as you lose the ability to absorb it that way. Not to mention skin cancer risk. Does keeping my D levels up help? That is hard to say but I think I would be even worse off if I did not.

Thank you irene8. I think I will try the liposomal d3. Did you use any specific brand?

I’ve read that Vitamin D deficiency can be serious for some people. I don’t use supplements (other than NAC) and must take one other vitamin, but I also use Vitamin D daily. Typically 2,000 UI daily but sometimes add an extra 1,000 UI occasionally in the winter. You don’t want to take too much.

The blood test for Vitamin D levels is helpful to get a baseline.

@lilianna,@bayarea58,@jnmy,@irenea8
My Vitamin D story.
Had a hip replacement. D level test not given before the surgery.
Found out (much, much research due to my story) that the Hospital for Special Surgery in NY for orthopedic surgery tests people for Vitamin D levels before doing the surgery.
After the hip replacement I was doing exceptionally well during the first couple of weeks after the surgery.
The doctors Physician Assistant requested I see her a week or so after the surgery. She convinced me that I should take Forteo injections after the surgery to build bone because they found that during the surgery my bone density was very low, soft bones.
I did not give much thought to it all and started taking the injections and I went down hill within a week or so of doing the injections. Mind you I was already taking the typical meds after the hip surgery. I was not taking pain meds, I didn't need it. I think it was mostly anti inflammatory and blood thinners after the surgery that I was taking.
Within a short period of time of taking the injections I began to feel bad and had no arm strength. Eventually with having taken the Forteo for a good few weeks I stopped because I believed it had something to do with what was happening. By a month and a half after taking the Forteo I was unable to lift my arms above my waist, had hardly any strength to open a store front door, and was in terrible, awful, pain. If I used my arms as I moved to get out of bed I would actually scream with pain, it hurt so bad.
Had to go temporarily stay with a friend because I could hardly do anything, other than being on the computer day and night desperately searching for answers.
I called the P.A. and suggested that it might be low Vitamin D. She said what I was experiencing had nothing to do with Vitamin D.
Continued to search on the internet, went to see a couple of doctors and to no avail.... and that's another long story.
Finally after research, deep thinking and a similar story of another person who was about ready to quit her college professor job because she couldn't dress herself. On her 13th doctor office visit, different doctor offices, a Nurse Practitioner knew immediately. Low Vitamin D. The nurse was from India...India has a pollution problem almost no sun etc.
After all I researched and with what I was able to finally find out and put together, I was at 39 before the surgery and 25 after the surgery, so you can imagine what I must have gone down to after the Forteo ...probably zero. My belief is that the meds for surgery and after surgery did not do me any favor with my Vitamin D level.
I started taking 10,000 IU a day with a bit of olive oil. Sounds like a lot but it did the trick. I don't know how long I took that amount for but it worked and all the symptoms went away.
I have another Vitamin D story to tell you about with my sister, but I won't bore you.
I now try to take 10,000 IU every other day. Some days I skip but I am tested at least once a year and the results vary depending upon if I have taken enough.
We have to find our sweet spot for each of us in terms of the amount to take and have it tested at least once a year.
When I told my new PCP my Vitamin D story he said he tests children for Vitamin D....
Also, if you recall it was believed that the patients who did not do well with Covid were found to be low on Vitamin D.
As I said, my story and my experience. It is also one reason I hesitate and do deep thinking and research before I do as the doctor suggests, take this.
Barbara

Barbara I am glad you shared your story, it’s life and you are right. It takes time, strength, and energy which many of us lack, to search, ask and go to visits. That’s why this site is so helpful to get ideas and often know that what hurts us is not in our heads but it’s real pain. My immunologist will see my cut D3 results this week and will see. Stay strong. My best thoughts go to you