So do other folks have to deal with low Vitamin D? Dysautonomia related.

[MikeO]

I will be danged my vitamin D was deficient 3 months ago (14) and have been taking 50,000 U's of Vitamin D since and my blood work only went up to (25) so still low today. Docs are going to kick my but. don't get it....

[MTRJ75]

Mine is low, but goes up pretty quickly with supplementation. And 50Kdaily  is a whopper of a dose. Are you sure the product you're taking is high in bio-availability. Most progressive docs I've spoken to prefer a liquid supplement (under the tongue) to pill or capsule form. 

[MikeO]

22 minutes ago, MTRJ75 said:

Mine is low, but goes up pretty quickly with supplementation. And 50Kdaily  is a whopper of a dose. Are you sure the product you're taking is high in bio-availability. Most progressive docs I've spoken to prefer a liquid supplement (under the tongue) to pill or capsule form. 

dose is 50K weekly. not sure what the vitamin D is just that it is a prescription from the pharmacy.

[MTRJ75]

50K per week (7K daily) is still a healthy dose. I've gone as high as 10K per day for a few weeks when I was really low, but yeah, you should be showing something after a few months. I had no idea that Vitamin D even came via prescription. 

[Jason_X]

Mine is typically low. 5000 iu/day did not bring my levels up at all. 7000/day brought it up a little. I’ll take 10,000/day if I haven’t taken it in a while. 

I seem to recall reading a study claiming that vitamin D supplementation was useless, but noticed that they only supplemented ~500/day if I remember correctly. It looked like a study designed to fail. 

On the other hand, I also remember reading a study claiming that vitamin E supplementation was useless. I then found articles on the Life Extension website that explained that most Vitamin E supplements were the alpha version of E, which they considered to be worse than taking nothing at all. I don’t know enough about vitamin D supplements to know whether there would be problems with the supplemental forms of it. 

[Water Lover]

Mine has been low—20 when first tested. My GP put me on 800 IU a day (though I upped it myself to 1000 since those capsules are easier to get). Over the first six months it made it up to about 25. I don’t know what’s happened in the last six as I haven’t had any reason for blood tests. 

Even at 20, my GP was not overly concerned. That was before my POTS diagnosis, when we were trying to figure out what was going on. He said that at that level he would recommend supplementation, but he thought my levels were unlikely to be causing any of my symptoms. I’m interested that some of you are being supplemented so much more aggressively. I think my GP is pretty conservative about supplementation, etc.

[Sea otter]

@Water Lover similar. Mine was low before diagnosis, I was using once a week huge amount of D vitamin for some time, don't remember exactly what amount. Didn't checked levels after that. But I was not feeling good every time when I used it. Same with other vitamins. Also my neurologist didn't seemed concerned and he said this is not related to my symptoms. 

I know some people that were using it, and their calcium got high because of it and doctors told them to stop using it. So all this with vitamin D is very tricky. 

[MikeO]

3 hours ago, Water Lover said:

Mine has been low—20 when first tested. My GP put me on 800 IU a day (though I upped it myself to 1000 since those capsules are easier to get). Over the first six months it made it up to about 25. I don’t know what’s happened in the last six as I haven’t had any reason for blood tests. 

Even at 20, my GP was not overly concerned. That was before my POTS diagnosis, when we were trying to figure out what was going on. He said that at that level he would recommend supplementation, but he thought my levels were unlikely to be causing any of my symptoms. I’m interested that some of you are being supplemented so much more aggressively. I think my GP is pretty conservative about supplementation, etc.

My test was at 14 so my PCP was concerned at what point is a good D value well Dr Google is not the way to go. i did improve to 25 with 50K  sure he will stay the course. My Endo is concerned about malabsorption and i get a feeling that being treated for SIBO helped B12 went up. again not a popular dys symptom but the folks that complain about GI issues should be looking elsewhere IMO.

@Sea otterover doing vitamin D will make you feel ill. my Cardiologist did ask for a metabolic panel and my calcium is 9.5 right in the middle of normal. 

   

[MikeO]

well from my PCP's office.

[BaPon]

Has anyone had low phosphorus along with low Vitamin D? I’m still waiting on Vit D test results. But I was hospitalized for hypophosphatemia (1.0mg/dl). Just wondering if anyone else with low Vitamin D has had issues with phosphorus levels. 

[MikeO]

1 hour ago, BaPon said:

Has anyone had low phosphorus along with low Vitamin D? I’m still waiting on Vit D test results. But I was hospitalized for hypophosphatemia (1.0mg/dl). Just wondering if anyone else with low Vitamin D has had issues with phosphorus levels. 

Do they need to test specifically for phosphorus? i did not see it come up on my metabolic panel.

[BaPon]

Phosphorus is not typically on a metabolic panel. It has been run by my nephrologist (I have chronic kidney disease) in the past). The critical low (1.0mg/dl) was found when I was in the ER as part of the cardiac work up. They often draw a magnesium level (along with troponin levels, d-dimer, etc) and the ER doctor ran the phosphorus along with those. Now that I am stabilized and home they are having me do a 24 hour urine collection to get more accurate measurement. 

[MikeO]

17 hours ago, BaPon said:

Phosphorus is not typically on a metabolic panel. It has been run by my nephrologist (I have chronic kidney disease) in the past). The critical low (1.0mg/dl) was found when I was in the ER as part of the cardiac work up. They often draw a magnesium level (along with troponin levels, d-dimer, etc) and the ER doctor ran the phosphorus along with those. Now that I am stabilized and home they are having me do a 24 hour urine collection to get more accurate measurement. 

Happy to hear you have stabilized. 

[MaineDoug]

@MikeO et al,

I have recently been diagnosed with malabsorption from malnutrition from Chronic Pancreatitis leading to Pancreatic Insufficiency. 
 

Be aware, Pancreatitis is sneaky, symptoms are similar to many other conditions. But any unexplained abdominal pain, bloating, and malnutrition should trigger testing to rule out Pancreatitis! My Malabsorption was so bad by diagnosis that I was loosing my vision, hearing, cognition and lost 25 pounds unexpectedly! Hopefully now with the Creon (digestive enzyme med) I’ll be able to build back up! 

[MikeO]

2 hours ago, MaineDoug said:

Be aware, Pancreatitis is sneaky, symptoms are similar to many other conditions

Thanks for the heads up. my GI issues did creep up again. i do see gastro next week. endo still suspects the pancreas. will see where this goes. i have been leaving a oily poop in the bowl as of late. 

[MaineDoug]

Be aware that vitamin deficiencies can result from malabsorption! Check abdominal organs. 

[Karen Elaine]

My Vitamin D has been chronically low for years despite supplementation. 

However, I did have to have my gallbladder removed, and am now low in other fat-soluble vitamins as well, and we are assuming that this is the reason for the low levels.

I also don't get as much sunshine as I should...