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Reply To: Hi, I was experiencing shortness of breath, fatigue , bone pain and eventually my right collar bone started deforming , doctor confirmed it’s vit d deficiency the level was at 9ng/ml, the doctor prescribed 25000iu d3 drops every other day for 6 weeks, I saw improvement after 6 weeks the levels were up to 43ng/ml . The doctor suggested now I lower the dose to 3000iu Everyday however almost all of my symptoms cameback. I spoke to the doctor and he said I can bump the dose up to 5000iu. The issue is I still have shortness of breath, pain in my shoulder, collar bone and overall weakness. I am curious if these symptoms will ever go away as the maintenance dose of 5000iu is obviously not helping? Would it be safe to raise the dose level more, I do try to get sun exposure as well but mostly on weekends.

Home Forums Ask the Vitamin D Council Hi, I was experiencing shortness of breath, fatigue , bone pain and eventually my right collar bone started deforming , doctor confirmed it’s vit d deficiency the level was at 9ng/ml, the doctor prescribed 25000iu d3 drops every other day for 6 weeks, I saw improvement after 6 weeks the levels were up to 43ng/ml . The doctor suggested now I lower the dose to 3000iu Everyday however almost all of my symptoms cameback. I spoke to the doctor and he said I can bump the dose up to 5000iu. The issue is I still have shortness of breath, pain in my shoulder, collar bone and overall weakness. I am curious if these symptoms will ever go away as the maintenance dose of 5000iu is obviously not helping? Would it be safe to raise the dose level more, I do try to get sun exposure as well but mostly on weekends. Reply To: Hi, I was experiencing shortness of breath, fatigue , bone pain and eventually my right collar bone started deforming , doctor confirmed it’s vit d deficiency the level was at 9ng/ml, the doctor prescribed 25000iu d3 drops every other day for 6 weeks, I saw improvement after 6 weeks the levels were up to 43ng/ml . The doctor suggested now I lower the dose to 3000iu Everyday however almost all of my symptoms cameback. I spoke to the doctor and he said I can bump the dose up to 5000iu. The issue is I still have shortness of breath, pain in my shoulder, collar bone and overall weakness. I am curious if these symptoms will ever go away as the maintenance dose of 5000iu is obviously not helping? Would it be safe to raise the dose level more, I do try to get sun exposure as well but mostly on weekends.

 IAW on

Just so I am clear you were still taking the 10,000iu and did you miss any dosages, even one, before the 27th happened? Did you have any physical OR emotional stress right before this happened?
It is “not common” for symptoms to return as long as you keep taking enough Vitamin D. Meaning if a person has a low level, treats themselves and then takes a maintenance dosage, they should be fine from then on.
I just had someone else like you not to long ago. I am not a doctor just so you know. Low Vitamin D levels can cause autoimmune illnesses. No one at this point knows if you take enough Vitamin D, for enough time, if you may be able to cure or control your symptoms. (There is a doctor from South America that is actually having great luck helping people with Multiple Sclerosis, thru using “large amounts” of Vitamin D. Well above the amount you are taking.)
This other person I referred to was taking on average 20,000iu a day and if he tried to lower the amount, his symptoms would “come back”. So I told him to try taking the 20,000iu for another month or two (only a guess on my part). After that I said for him to try cutting back to 15,000iu and see what happens. Maybe take that for a few weeks to a month. (You may even want to stick to 8 weeks on each amount.) If he was still OK, then try cutting back to 10,000iu. If for example at 10,000iu his symptoms returned, then he should go back up to the 15,000iu or perhaps an amount between the two might work. (He was of average weight, so weight was not a factor.) I also basically told him to “ignore” the Vitamin D levels and to not bother testing for the time being.
Since your symptoms ARE going away with the D, I have every confidence that you should keep taking it. We recommend maintaining a level of 80ng/ml for Autistic children. Your level after 4 weeks was 56 but after another 4 weeks of 10,000iu should be much higher but you may be “burning through” a lot of Vitamin D.
So I “googled” eye “pain” and autoimmune and “only” got Rheumatoid arthritis (RA). RA can cause dryness, inflammation of the white of the eye, thinning of the cornea, and other painful ocular conditions. Not trying to scare you but give you a reason why only large amounts of Vitamin D are helping and why you are not completely better. You can look up the rest of the symptoms for RA if you want to.
This is why I originally said that “levels” may not necessarily equal no symptoms.
Let me know what you think!

Answered by  IAW on

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