Darlene Posted January 31, 2012 Report Share Posted January 31, 2012 when the rheumatologist gave me a prescription for vitamin d he gave me 4 50,000 IU's capsules to take once a week for a month. well i'm on my last pill, and asked him if he was going to give me more. he said no. i said are you going to do another blood test to see if it came up. he said no, the 4 pills you took should have brought it up. how does he really know? anyway, hope hes right. i myself think he should had checked it again.then i told him about some new symtpoms, about how i have been having muscle twitches. he said its from anxiety/stress. i laughed at him and said i don't have anxiety or stress. i said dr.'s alway say that. let me guess, my low vitamin d levels are caused from stress to, haha. definately lost my faith in dr's. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted January 31, 2012 Report Share Posted January 31, 2012 I can't believe he is not retesting! Ugh. Did you notice any benefit? Quote Link to comment Share on other sites More sharing options...
Darlene Posted January 31, 2012 Author Report Share Posted January 31, 2012 yes i did. think it helped my POTS symptoms too. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted January 31, 2012 Report Share Posted January 31, 2012 cant you just keep taking supplements if you think its low? Some say that it helps POTS. Ive heard that before. ive never done it though as my vitamin D is high because im an expert at lying in the sun. Quote Link to comment Share on other sites More sharing options...
POTSMama Posted January 31, 2012 Report Share Posted January 31, 2012 My understanding is that D levels won't just come up with dysautonomias like they do in other people, because there is some underlying cause of the low D that isn't going to go away. I think you need to tell him that and have him retest. If I don't take D consistently, I just drop right back down - - I think that's true of a lot of us. Like Sue asked, do you feel better? I do feel better when I take D. Quote Link to comment Share on other sites More sharing options...
we_don't_look_sick Posted January 31, 2012 Report Share Posted January 31, 2012 He doesn't have to retest, a pcp or any Dr can.I feel better taking Prescription Strenght D, the otc pills do not work. Right now I have Rx 50,000 4 a month and also I am taking gelcaps of 5000 IU vit d on days I don't take the Rx.I agree it seems to help lessen the severity of POTS.POTSMAMA; I did not know that about dysautonomia people having trouble bringing their D up! An endocrinologist apparantly didn't know it either. Quote Link to comment Share on other sites More sharing options...
we_don't_look_sick Posted January 31, 2012 Report Share Posted January 31, 2012 I get muscle twitches when the D is low and also as I am taking the Rx Vit D.I understand about losing faith in Dr.s. Quote Link to comment Share on other sites More sharing options...
jangle Posted January 31, 2012 Report Share Posted January 31, 2012 My vitamin d levels haven't come back yet. You guys might want to try calcitriol for vitamin d as it's the body's active form of vitamin d. Quote Link to comment Share on other sites More sharing options...
crowebirds Posted January 31, 2012 Report Share Posted January 31, 2012 You will know if your vit D does not come back up. Don't just take it to take it though, be careful because it too much can hurt you.My husband and I both don't process Vit D. We have put our daughter on 2,000 iu daily and her DYS symptoms have improved.If you know someone who sells Juice Plus in your area you might want to try it. They have both a pill and gummy form. It helps to maintain your levels.They basically have put vegetables in one pill and fruit in another pill. You get the benefit of several fruits and veggies. It is all natural.The pills are normal size, but I can't swallow them for some reason so my daughter and I use the gummies. Quote Link to comment Share on other sites More sharing options...
CharmedLinz Posted January 31, 2012 Report Share Posted January 31, 2012 I had to take the RX 50,000 once a week for 3 months when all this started, my levels started out at 17.Now almost 3 years later I take 2000 units a day and have been checked several times.Levels have been consistenly from 45 to 65 ever since.I didn't notice any difference at all.While I think we should all have good Vitamin D levels I did get a totally different opinion from one doc I saw and it's something I do think about and tried her suggestion.I saw a Nephrologist, one of the top one's in my city, because I have was having protein in my urine and whacky calcium and very low PTH, and a bit of High Phosphorus. Other docs said I might have a calcium channel problem so off to the kidney doctor.She thought any little kidney stress I have is secondary to the Dysautonomia or Autoimmune problems yet to be DX'ed.But she also had a new spin on Vit D and she showed me some research showing that they are now finding that "too Much" Vitamin D is causing magnesium, potassium, and phosphorus problems which in turn causes PTH to drop to maintain calcium.She didn't like my Vitamin D levels being at 60 at the time. Told me to stop the Vitamin D to see if in turn the calcium and PTH would normalize.Didn't really make sense at the time, this was over a year ago. Did it anyway, stopped the Vitamin D for a month.Vitamin D dropped to 38.Phosphorus did normalize, went back down from being a little high.Magnesium stayed the same.Potassium actually rose a little which is a good thing since I'm on Florinef.PTH stayed non-detectable and Calcium was even more whacky than it had been.So back on the Vitamin D, took 2 months but levels went back up into the 60's where all my other Docs like it to be.Every other problem is all still there, including the PTH problem which has yet to really be figured out.So I take the 2000 a day because I feel like it's probably better for my bones and heart to be in the 60's rather than the 30's or less. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted January 31, 2012 Report Share Posted January 31, 2012 POTSMAMA; I did not know that about dysautonomia people having trouble bringing their D up! An endocrinologist apparantly didn't know it eitherIve never read that anywhere before so perhaps that is why Quote Link to comment Share on other sites More sharing options...
sue1234 Posted January 31, 2012 Report Share Posted January 31, 2012 Linz, when you say whacky calcium levels, what were they--high or low? Quote Link to comment Share on other sites More sharing options...
Christy_D Posted January 31, 2012 Report Share Posted January 31, 2012 My son takes 2000 UI daily to keep his D levels maintained. He was at 7 , 2 years ago. When he had it checked last it was at a good level. Without the daily dose though he would probably plummit. Be careful though, I've read too much vitamin D is not good for you. Quote Link to comment Share on other sites More sharing options...
rubytuesday Posted January 31, 2012 Report Share Posted January 31, 2012 I was found to be critically low on vitamin D and had to take the Rx form. Then I sustained daily 1000 iu. My vitamin D levels were and continue to be monitored from time to time and they are always within normal limits. On the other hand I was taking 500 mg Calcuim Citrate twice a day (osteopenia) and my calcium level kept coming back a little high at 10.5. I wondered if that was contributing to my nausea.My immunologist took me off the calcium and vitamin D, fish oil, folic acid (she can't take my mg from me as it helps with sleep and migraine prevention). Instead she wants me to take a nickel free multivitamin like Centrum (I found a generic One a Day 50+). My PCP was not in total agreement but we'll see how monitoring bone density/labs go on close watch. Too much vitamin D can be damaging, just as too little. Quote Link to comment Share on other sites More sharing options...
jangle Posted January 31, 2012 Report Share Posted January 31, 2012 Christy, did your son improve in any of his POTS symptoms with vitamin D supplementation?And just so we're clear are we talking about 25 -OH vitamin D3 levels or 1, 25( OH)2 vitamin D3 (calcitriol) levels Quote Link to comment Share on other sites More sharing options...
Christy_D Posted January 31, 2012 Report Share Posted January 31, 2012 Jangle- At the time when his vitamin D levels were so low, when we added vitamin d it helped him immediately with the exhaustion he was experiencing. As for his other POTS symptoms, I don't think it did much. He is still very ill and cannot attend school due to debilitating nausea. Quote Link to comment Share on other sites More sharing options...
POTSMama Posted February 1, 2012 Report Share Posted February 1, 2012 ...POTSMAMA; I did not know that about dysautonomia people having trouble bringing their D up! An endocrinologist apparantly didn't know it either.OK, I stand accused whipping something off in a hurry last night while in a pretty bad brain fog. No, I don't know of any research showing that (usually I don't state something so positively without research support, and I'll try not to do so again), and it might well be wrong. I should have simply said I've heard others with dysautonomia state that they, like me, have trouble bringing their D up even when they take large quantities, so I was assuming that was the general case. I have had nearly unmeasurable D levels each time I've been tested and I definitely feel better on supplements, so in my case I don't worry about overdosing (and I'm not on prescription strength, but just over the counter large dose... Carlson's drops). But it's clear from the responses that others here can easily come up to good D levels and have to be careful, and it also sounds like not everyone notices a dramatic or positive difference with supplementation. Again, we are a heterogenous group so I shouldn't have tried to characterize us all as the same. My apology. Quote Link to comment Share on other sites More sharing options...
McBlonde Posted February 1, 2012 Report Share Posted February 1, 2012 I don't know if this information helps but I have very low Vit D 3 and my doctor said that the majority of endocrine patients do.... paper he wrote on it.http://www.goodhormonehealth.com/VitaminD.pdf Quote Link to comment Share on other sites More sharing options...
POTSMama Posted February 1, 2012 Report Share Posted February 1, 2012 Thanks, McBlonde - very interesting. I am thinking I may need to have my thyroid function checked, since on another online group someone suggested to me that some of my symptoms may be consistent with hypothyroidism. Quote Link to comment Share on other sites More sharing options...
McBlonde Posted February 1, 2012 Report Share Posted February 1, 2012 Thanks, McBlonde - very interesting. I am thinking I may need to have my thyroid function checked, since on another online group someone suggested to me that some of my symptoms may be consistent with hypothyroidism.You're welcome! Low Vitamin D3 is also being found in pre-diabetes, too. Here is the list of symptoms of low vs high ...http://www.goodhormonehealth.com/symptoms/gland_hormone_symptom_table.html Quote Link to comment Share on other sites More sharing options...
CharmedLinz Posted February 1, 2012 Report Share Posted February 1, 2012 Great links guys, thanks!Sue---- My Calcium has been normal, low, and high, all over the map. As high as 10.7 and as low as 6.9, all while my PTH is undetectable. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted February 1, 2012 Report Share Posted February 1, 2012 My calcium has also been all over. I think I'll start a poll of calcium and PTH, as we already have the poll on vitamin D. Calcium affects fluid balance in the body, which is interesting if some of us are having weird levels. Quote Link to comment Share on other sites More sharing options...
cindeebee Posted February 1, 2012 Report Share Posted February 1, 2012 My vit d was around 31, and dr put me on 50,000IU for six months. Re-tested at 53 and now has me on 2,000 daily. I definitely felt better on the 50,000IU... I had sooo much more energy then and it's supposed to help with joint pain AND sleep. I wonder if it's gone back down now though, since I haven't been re-tested in a while. From what I remember, the dr says it doesn't work quickly and takes a while to get in your system. So I'm surprised he only put you on it for one month and then never retested . I would probably think about getting a new dr Quote Link to comment Share on other sites More sharing options...
jangle Posted February 1, 2012 Report Share Posted February 1, 2012 Make sure the levels reported are the 1,25 D3 vitamin D not 25 D3 vitamin D levels. Quote Link to comment Share on other sites More sharing options...
Lemons2lemonade Posted February 1, 2012 Report Share Posted February 1, 2012 My vitamin d was 33 low normal. Quote Link to comment Share on other sites More sharing options...
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