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    VIT D3
    1dazygal posted:
    Got the blood test back on Thur and they called. Never a good sign for me.....

    My question- I take prescription vit D3 ,since 2009,at 50,000ius 1x a week. I have still been unable to get in even the low normal range!

    Could you share how much you take prescription or pill form, what dose and are you in the normal range yet? (even low normal) & how long did it take to get there?

    My Dr was going to UP it but my husband took in the med list and he quickly said no.

    I'm completely confused
    foreversore responded:
    I wish I could be helpful here but I don't currently take Vit D. Hopefully Mimi or one of the others who take it will chime in. The only reason I can fathom as to why your doctor wont up the dose after seeing your med list is that maybe its possible that it could interfere with one of your meds?

    It may not hurt to call and talk to your doctors nurse and ask him/her why he wont increase it to normalize your D level. They may be able to help clarify things for you.
    booch007 responded:
    This is a good question to put to Dr P. But maybe Mimi has a thought.

    My thought is are you taking it with a meal? It is a fat and needs certain chemistry in your bowel system for absorption.
    50,000U is a good dose. I also was low and did that for a few weeks and now I take 2000U a day. A bit above the recommended 1000U a day that Dr.'s often use.

    Good luck with this. PUNT it over to Dr. P. Also take a look on Dr Oz's website for Vit D and his recommendations of HOW TO TAKE IT. You may not be absorbing it?

    Take care, Nancy B
    rudyandirmouse responded:
    1dazygal, Hi Linda R here and that's a good question(s) for Dr. P. The thing about fibro is that things that work well for one of us doesn't always work well for all of us.

    I don't have a lot of 'other' medical things going on so for me personally I can pretty much take things that help get med back to feeling well without drug inter action going on.

    Taking Vit D3 in high doses for a short period of time, as far as I know, doesn't cause medical issues. It can however cause Kidney stones if taken in large amounts over a long period of time.

    Doctors don't usually let anyone do that. Their goal is to get us into the normal range 40 - 80 and keep us in there with 2 - 4 thousand I.U.'s day.

    And most of us know when we get into the normal range to just take the necessary Vit D each day to keep us there.

    Having said that I'd be interested in how this plays out for you.
    Please post and keep us in the loop.
    Linda R.
    dollbug responded:
    Hello dazygal.....MiMi in have taken the prescription dose of 50,000 iu since 2009....and your level is still not even in the "normal range"? Something is definitely not right with this....I only took the prescription dose for a very short time....and then the doctor told me that I would need to be on the OTC for the rest of my life....perhaps you need the Vitamin D in a smaller dose every day....I would definitely put this question to Dr. P...and I would also do some research on this....

    I guess you might say.....I am the crazy FMer here who started encouraging everyone here to be sure and get the Vitamin D level checked....I do know that when I first got sick....I had multiple health issues going on....and I do know that when I was sent to a surgeon about parathyroid issues.....he told me that he thought my pain was from my very low Vitamin D...(this might have been part of the pain, but I also had parathyroid issues)....anyway...the surgeon told me that my level was way too was 12 or 14 at the time...

    I also happen to know that low Vitamin D can and does cause some of us to have additional pain....or it sure did in my case....I have done a lot of research myself on Vitamin D...and according to the medical research that has been done on can affect other illnesses as well....Vitamin D is a really very old vitamin....but it just appeared a few years being one that people were/are NOT getting enough exactly this causes the additional pain for some of us....I have no idea....but I do know that in my made a big difference...

    I will also tell you this took me a very long time for me to get back into the "low normal range" also....there are some things though that you might want to try....such as when to take it...and with what other supplements you can/can not take along with it....(do you take any other supplement at the same time?)....look at what Dr. Oz says, as Nana B suggested....

    I am sure that there is indeed some sort of answer here....and you will be able to figure it out...

    My daughter is also on the prescription dose as her D level was 2.....and this has helped her lose a lot of weight....she has always been little....but started to gain weight and was working out everyday and watching what she ate also....

    I am just curious.....your doctor was going to UP your dose.....was he not the doctor who put you on it to begin with? Did he NOT realize that you were taking it?

    Again.....I hope you will redirect this question to Dr. P....just put his name in the post on the subject line...and he will get back to you with an answer....

    We will all be watching for Dr. P's answer on this...

    Take care and good luck....


    My personal exchanges are Vitamin D and Pain and Wrath of the Dragon....if you care to visit..
    1dazygal replied to dollbug's response:
    Seems he had the nurse call- my husband takes these calls because of fatigue and mind fog. My husband stopped by he's office and had a copy of my Meds that he had requested. He the Dr happened to walk out and my darling cornered him and said here's her Meds. He reviewed them and said don't up the D3. I'm having to up my thyroid. I don't know. I just know I look 12 months pregnant and I've gained 30lbs in 2 months on my normal diet. Something is off yes?

    He's said at the last two visits go to a Fibro clinic for a work up I don't know what's going on. PDR

    I see my fibro Dr in 2 wks-only 3rd visit with him- Ill try again for info. I'm really getting bad. It's a tough battle, perhaps with other health issues they really can't figure me out!??

    I haven't posted to Dr P before. I will look into it. I'm concerened about side effects. I have stomach issues and many pills ie. Vits can cause a lot of pain taken daily. Brother
    dollbug responded:
    Hello can direct questions to Dr. P or Dr. Margaret by putting their name on the subject line of your post.....and they will get back in touch with you with a reply....sometimes it does take a few days...but not to they will get back to you..

    I hope this helps...and I hope you can find some answers....

    Take care.


    My personal exchanges are Vitamin D and Pain and Wrath of the Dragon....if you care to visit..
    forgetful88 replied to 1dazygal's response:
    If they are upping your thyroid dosage then your TSH is high possibly meaning you have hypothyroidism, which would explain the weight gain.

    I currently take 500000 IU for tweleve weeks & am to continue to take my 2000iu daily as well.

    My thyroid level was high as well, so they upped my thyroid medication too..
    fibroinsd responded:
    I take 2000 units of vit d...1000 in the morning and 1000 at night..I am in the "normal" range now...can't remember how long it took me to get there...It is odd that if you have been taking the 50,000 units that it hasn't gone up...Do you know what your numbers are? How long have you been taking it?? Oh...I see you said since 2009...that does seem like a long time..What does your doc say about it??

    Do you take magnesium?? Have you thought about adding that in? Magnesium is suppose to help you absorb stuff...

    Definitely, need more info from your doc and maybe from Dr. P.

    Hope you find something that helps..
    Let's put the fun back in dysfunctional !- Mary Englebright
    1dazygal replied to forgetful88's response:
    Mine was low. I took armour thyroid a year or more for two yrs then.

    When I called in for a refill I was told "that brand is no longer available"! I'm confused again, I read your not to just switch to a different brand? I was on the new brand and my fatigue to the point I would sleep for 12-14 hrs some "days". I mentioned the horrible weight gain -30lbs in 2 months and my Dr ran an absorption test. Guess what. I wasn't. I had been on 60mg of both brands. At one time.

    I'm thinking my Dr has brain fog because he wrote the Armour thyroid that now has suddenly reappeared for 30mg and I didn't catch it. I use pill days of the week holders and just fill a month at a time.

    So now I know the extra fatigue and stupid weight gain but I'm VERY angery at my PDR. How could he make such a mistake? Open my file and look at the med list. I'm so full of anger towards the medical field. I feel invisible to them.
    Anon_2912 replied to 1dazygal's response:
    My new endo did the same thing to me on my thyroid medication. I was on 125mcg for 6 yrs of Levothyroxine, then she just switched it to 175mcg Synthroid instead.

    I can't tell a difference yet, but it has only been 3 weeks with the change.

    I had to have RAI to try & kill the thyroid, but after two thyroid storms I had to have the entire thyroid removed.

    I had hyper/graves/toxic goiter, that was 18yrs ago.
    Mark Pellegrino, MD responded:
    I believe correcting a low vitamin D level is important to help our body run as smoothly as possible, especially when Fibro is trying to disrupt everything. Some people don't seem to absorb D supplements well despite the usual prescribed doses, and their blood levels of 25(OH) D stay stuck on "too low."

    Perhaps one's metabolism does not favor proper absorption of the D pills, or certain meds, foods, hormone conditions, etc are interfering. Something "special" occurs in the occasional patient that prevents the D supplement from fully absorbing.

    This doesn't mean nothing is absorbed from the D pills. The D levels usually go up some, or at least do not go lower, which implies partial absorption at least. Think of 2 straws, one regular and one skinny (like used for stirring). A normal D absorber has a regular sized "straw" that allow D to pass normally from the stomach to the bloodstream. The poor absorber has the skinny straw ( the poor thing!) that permits only a small fraction of the D pill to be absorbed. I imagine a way to try to prove this would be to measure for any spike in D in the body's waste a few days after taking a 50,000 IU pill, compared to the normal absorber taking the same dose. (No, this is not a study I am considering...!)

    A way to try to counteract this situation if it occurs is to increase the dosing frequency. Instead of taking D once a week in a very large dose, I may instruct my patient to take daily large doses instead. Or I may have them take very large doses more than once a week in addition to daily doses. The dosing regimen is always titrated according to one's individual response. My strategy is to try to give the poor absorbers more opportunities to use their skinny straws to eventually suck up enough D to raise the body's level to the normal range, and then maintain the level on whatever high dose may be needed.

    Work with your doctor. Good luck!

    Dr P
    Wolfsong452 replied to Mark Pellegrino, MD's response:
    after coming to this web site, I was taught by MiMi, about the Vitamin D. I had it checked and it was 11, this is after working at a organic dairy farm for about 3 months.

    ok, 50,000 three times a week for three months.

    ok, I was rechecked, I'd gone up from 11 to 35, PCP then said, take OTC and we'll check it in a year.

    A year later I was going to the Pain managment doctor, so they did a blood test for "D:" and some other things. yep, I was back down low again., So another 3 months, 3x's a week.

    I went back monthly after about 6 months I asked if they should be checking the "D" again, Pain Managment doctor is now saying have your PCP do it.

    I went and had the blood drawn, 2 weeks went by, no nothing. I called and they said, everything was normal, I then got a letter saying the same thing.

    I went there, along with calling, to find out the exact numbers and what tests were done. I could get no answer, as either the doctors were busy nurse wasn't there etc.

    FINALLY, I called and got an appointment. then I got the doctor to explain everything and say they're sorry that the "D" wasn't checked.

    ok next blood draw there talking about the cholestrol.

    no nothing on the "D"

    I called, they said that result hasn't come back yet. ok,
    should be in next week!

    Ufo2kitty responded:
    Hi. Just wanted to tell you my Endo said if mine (D level) didn't come up, he was going to perform a blood test that would tell him if I had celiac disease since that is the section of the digestive system where D is absorbed - per my doc. Just a thought Hope you are feeling better.
    Anon_2912 replied to Ufo2kitty's response:
    I had a colonoscopy & endoscopy. They did determine I do not have celiac disease. Althought my blood work came back as negative for celiac I still have low Vit D.

    I am on my 3rd regime of the large dose for 12 weeks & OTC 2m daily as well.

    I go back in the end of Feb. I am just a low absorber of Vit D. For me being in normal range does not make a difference in my pain.

    I think a lot of people with thyroid issues have low Vit D regardless of how much they take.

    My opinion is that the radiation iodine pill I took just screwed my entire metabolism up.

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