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Vitamin D and Interstitial Cystitis

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  • #16
    My Experience

    Originally posted by stef000 View Post
    Any tips on taking supplements???
    I still flare from taking ANY supplements....
    i know i need them but i have tried everything....liquid stuff----that stuff is AWFUL....
    makes me so sick....the liquid types....i have spent so much money on stuff i either get sick from or just cannot take it since my bladder hates them all....
    i do find if i have boost and sip water too then its ok.....
    anyone got any ideas on that.....
    well let me know.....
    i hope everyone takes great care

    hugs n better body days
    I needed to get my bladder lining somewhat healed before I could attempt anything. For me, 500 mg glucosamine/500 mg MSM 3 times/ day helped. It took a few months.
    I'm also on Hydroxyzine HCL 25 mg 3 - 4 /day. Once I was better off, I found the chewable "viactiv" type of Vitamin D hurt my stomach and bladder the least.

    I got the idea for trying this form of Vit. D from my gastro. I told him how difficult it was for me to find a form of calcium I could take and he recommended the chewable Viactiv because you are starting to digest it as you are chewing. (BTW, I use the Target brand.) Anyway, he was right.

    I guess you have to find what works for you. Of course, I take most of my supplements with meals, except for the fiber, which is between meals so as to not affect absorption of important nutrients.

    Hope this helps someone.
    Last edited by futurehope; 03-16-2008, 04:57 AM.
    Diagnoses: Mast Cell Activation Syndrome (2012),Interstitial Cystitis (2003), Postural Orthostatic Tachycardia (2003), GERD (since ?), IBS (since ?), Low Blood Volume (2006), Small Intestine Bacterial Overgrowth (2007)

    Medicines:
    Claritin 10 mg/AM for MCAS and allergies
    Synthroid
    Aciphex 20 mg in PM for GERD
    Zantac 75 mg, one at night for MCAS and GERD
    Singulair 10 mg in AM, for MCAS & allergies
    Zyrtec 5 mg/PM for MCAS and allergies

    Non-Medicinal Helps:
    glucosamine 500mg/MSM 500mg 2 X/day
    I avoid foods that I react to in my esophagus, bowel and bladder, and I react to many things. It is an imperfect method, but it is all that I do at the moment.

    I can do all things through Christ which strengtheneth me. (Phillipians 4:13)

    Comment


    • #17
      I've lived in Florida for almost 18 years; I don't spend a lot of time in the sun, but probably get more vitamin D from the sun than those that live up north -- and have IC symptoms -- so...I'm not convinced about the lack of Vitamin D being the culprit.

      Comment


      • #18
        I have been seeing an endocrinologist trying to get my vitamin D levels up and she said no matter how long you spent in the sun it will never get it to the level it needs. Tha is kind-of an old rule of thought and she if you did spent that much time you would be dead from skin cancer. I too thought Vit. D meant getting it from sun but it really deals with a whole lot more. It really was a fluke that I found out I had this. I am taking an enormous amount once a week for the next twelve weeks and this is my fourth week and can tell a big difference. I am not so fatigued and honeslty my bladder feels better. She also said that my medication cannot absorb probably in my body and work to its full potential w/ a Vit. D deficiency. I thought that was interesting. So it has been great taking one pill a week w/ no side effects. All of us w/ IC wish we could do that and it cure us completely. I would highly recommend others getting theirs checked. Most of the symptoms of a vit. D deficiency mimic fibro. so a lot of time it is overlooked and fibro. is misdiagnosed. I will be interested to see how much of a coorelation there is to IC and Vit. D. b/c it really is just now becoming something that doctors are doing bloodwork for.
        I am taking 50,000 IU once a week, prescription.

        Emily

        "Consider it pure joy, my brothers when you face trials of many kinds, because you know that the testing of your faith develops perserverance." James1:2

        Diagnosed with IC 3/2007
        Endometriosis w/ laproscopic surgery 2003 and 2007
        Hydro, Cysto, urodynamics testing, and many instills
        IBS 1998
        Current Medications: Elmiron (200mg morning and night), Vaginal Valium Suppository at night, IF 3 WAVE Stimulator, Cymbalta, and birth control

        "Thank you to all for your support. I have been able to live a more normal life thanks to all the information found on this site and the angles I have encountered."
        THESE ARE THE TWO LOVES OF MY LIFE!

        Comment


        • #19
          Originally posted by runningemiles View Post
          I have been seeing an endocrinologist trying to get my vitamin D levels up and she said no matter how long you spent in the sun it will never get it to the level it needs. Tha is kind-of an old rule of thought and she if you did spent that much time you would be dead from skin cancer. I too thought Vit. D meant getting it from sun but it really deals with a whole lot more. It really was a fluke that I found out I had this. I am taking an enormous amount once a week for the next twelve weeks and this is my fourth week and can tell a big difference. I am not so fatigued and honeslty my bladder feels better. She also said that my medication cannot absorb probably in my body and work to its full potential w/ a Vit. D deficiency. I thought that was interesting. So it has been great taking one pill a week w/ no side effects. All of us w/ IC wish we could do that and it cure us completely. I would highly recommend others getting theirs checked. Most of the symptoms of a vit. D deficiency mimic fibro. so a lot of time it is overlooked and fibro. is misdiagnosed. I will be interested to see how much of a coorelation there is to IC and Vit. D. b/c it really is just now becoming something that doctors are doing bloodwork for.
          I am taking 50,000 IU once a week, prescription.

          Hey! It has been a long time since we talked. I have wondered about the vitamin and found my bladder got better when I supplements with cod liver oil daily. So what endocrinologist are you using? I noticed it was a woman and I saw a lady endo. in Little Rock several years ago. She was really cranky and was in practice at the Little Rock Diagnostic clinic.
          I have an appointment with my GP on monday so I am going to ask him to check my vit. D levels.. It is great to know that you are doing better. Keep me posted about what you are doing regarding the vitamin D. I have been losing a lot of hair and thought it was from my patch. My gyn. thinks I need to find an endocrinologist as he is stumped. I need to find a good one to get referred to.
          On top of everything else, I am having more female trouble. I am worried that it is more than endo this time. I am trying to get in with the gynecologic oncologist next week. Honestly, this whole thing feels like a bad dream!
          I sure hope this helps you. You are so young and you really need to feel good to raise your child and even have more kids. Please do keep me posted.
          -Vicki
          Blessings and Hope

          Current Meds.
          OFF MY MEDS
          Vivelle Dot: .10 changed every 72 hours
          Compoounded Progesterone 25mg/night

          Current Supplements
          Hydroeye: 2 pills AM

          Diagnosed
          1995: Endometriosis
          1998: Interstitial Cystitis
          2006: Bladder Endometriosis, Total Hysterectomy and Bowel Re-Section
          2008: Removal of Ovarian Remnant and Endometrial Cyst That was Obstructing Ureter
          2012: Laparoscopic Removal of Adhesions and Staples

          Comment


          • #20
            vit d recommended by naturopath

            Just went to a new naturopath who specializes in visceral manipulation (especially of the pelvis) and also takes care of a lot of aids patients trying to boost their immune. He told me the evidence is overwhelming that vit d3 is critical in protecting us from cancer, etc and that mainstream doctors do not realize levels need to be quite high - atleast 70 and up to 120 (sorry don't know what the blood test units are). He said I must get my levels tested in order to see what I need. I also just read that one would have to take about 10,000 units a day for a year to reach toxic levels. Anyone who has fibro should also research d-ribose. I think we should all do our research and take this info to our regular doctors,too. Naturopaths in the state of WA are licensed to practice medicine, but I don't think all states re ognize them. Good luck! PV
            I got IC in 1970! I was not diagnosed until 1991. I've tried many drugs and therapies but I tend to only resort to drugs when in a flare because when I am not in a flare (from being good on diet), I suffer only from small bladder volume (like about 7 ozs.) and peeing will relieve the discomfort. When I am feeling relatively normal, I say to myself I am glad I am not on a drug. When I am in a flare, I say, why am I not on a drug! I've recently have been trying to solve my connective issue problems in general. I look to diet and herbs mostly unless it gets really bad. I still think there is great hope for each individual finding a path to healing and there are many.

            Comment


            • #21
              WEll, I went in and had my vit. D tested. Sure enough, it was very low. My doc called me in a weekly supplement and said to come back in three months to be re-tested. I sure hope this helps my fatigue, hairloss and my bladder.
              -Vicki
              Blessings and Hope

              Current Meds.
              OFF MY MEDS
              Vivelle Dot: .10 changed every 72 hours
              Compoounded Progesterone 25mg/night

              Current Supplements
              Hydroeye: 2 pills AM

              Diagnosed
              1995: Endometriosis
              1998: Interstitial Cystitis
              2006: Bladder Endometriosis, Total Hysterectomy and Bowel Re-Section
              2008: Removal of Ovarian Remnant and Endometrial Cyst That was Obstructing Ureter
              2012: Laparoscopic Removal of Adhesions and Staples

              Comment


              • #22
                I just started seeing a new doctor (that I really like!) and he just tested my vitamin levels. With my last doctor, I had to fight just to get them to test my thyroid!

                Turns out I'm extremely low on Vit. d (12.8! when it should be at least 50) and low on iron and magnesium. I just started the magnesium and iron last week and will add the vit. d. this week. The vit. d alone can lead to muscle pain, fatigue, anxiety, depression, etc.

                I'm staring at 2000 iu (I think it's iu) a day of vit. d3. The doc is retesting in two months.

                It's interesting, I do feel much better on days when I've been out in the sun. Hope that's a good sign.
                mom_in_ma

                Comment


                • #23
                  This topic is interesting. I too went in to my endo in November 2007 complaining of fatigue and of course pain. My Vitamin D level was "8", very low. However because of the side effect of the week dose of 50,000 i.u., I am taking 1,000 i.u. daily. I can't tell much difference other than my hair is thickening up but the "fibro" pain is still there. I see her again in May and will discuss.

                  Comment


                  • #24
                    Cillajane,
                    My doc originally suggested 3,000 iu daily of D3 (it's more bioavailable) than D2, but then went down to 2,000 when I said I was trying to get as much sunlight as possible.

                    Have they retested your levels? My doc said that optimally I should have 40-50 ius and that even the 20 is (the lower limit is much too low). I have no idea whether or not this will help my PBS, but I clearly I am deficient.
                    mom_in_ma

                    Comment


                    • #25
                      I am curious at what side effects you had from the 50,000 IU a week. That is what my endocrinologist has me taking and you have SO many symptoms w/ IC that I wonder if anythign I have going on is that. He is having me take this for 3 months and then re-test and then said I would have to take somethign for the rest of my life.

                      Emily

                      "Consider it pure joy, my brothers when you face trials of many kinds, because you know that the testing of your faith develops perserverance." James1:2

                      Diagnosed with IC 3/2007
                      Endometriosis w/ laproscopic surgery 2003 and 2007
                      Hydro, Cysto, urodynamics testing, and many instills
                      IBS 1998
                      Current Medications: Elmiron (200mg morning and night), Vaginal Valium Suppository at night, IF 3 WAVE Stimulator, Cymbalta, and birth control

                      "Thank you to all for your support. I have been able to live a more normal life thanks to all the information found on this site and the angles I have encountered."
                      THESE ARE THE TWO LOVES OF MY LIFE!

                      Comment


                      • #26
                        .

                        Can you get the vitamin d3 at the health food stores or do they have to be rx'ed.

                        JJ

                        Comment


                        • #27
                          As low as my levels were they called in a script.

                          Emily

                          "Consider it pure joy, my brothers when you face trials of many kinds, because you know that the testing of your faith develops perserverance." James1:2

                          Diagnosed with IC 3/2007
                          Endometriosis w/ laproscopic surgery 2003 and 2007
                          Hydro, Cysto, urodynamics testing, and many instills
                          IBS 1998
                          Current Medications: Elmiron (200mg morning and night), Vaginal Valium Suppository at night, IF 3 WAVE Stimulator, Cymbalta, and birth control

                          "Thank you to all for your support. I have been able to live a more normal life thanks to all the information found on this site and the angles I have encountered."
                          THESE ARE THE TWO LOVES OF MY LIFE!

                          Comment


                          • #28
                            I think it depends on your doc....mine are in the extremely deficient stage, but my doc said I could get d3 over the counter. I actually ordered an emulsion online as it's the most bioabsorbable and has the fewest ingredients (besides, it's only one drop of medicine - yes, one drop). The ones over the counter have either soybean oil or additives and I guess it would depend on how diet sensitive you were.

                            Runningmiles, how long was it before you noticed the positive changes?
                            mom_in_ma

                            Comment


                            • #29
                              Vitamin D

                              The side effect I had with using 50,000 I.U.s was severe migraine headache. When I reported that to my doctor she said I was the second patient she had that had had that reaction and to stop it immediately. She instructed me to go to the drug store and buy 1,000 i.u,s and take daily. Remember in November it was dark when I went to work, I work in a basement office without windows and it was dark when I got home. So I have been trying to get outside more and I never miss a dose of Vitamin D. I can't really tell it has helped as the fibro has raised its ugly head and I am in a lot of pain any way.

                              Lucia
                              Lexington, KY

                              Comment


                              • #30
                                I feel like it slowly started helping my energy after week two however I am on the prescription 50,000 IU a wek.

                                Emily

                                "Consider it pure joy, my brothers when you face trials of many kinds, because you know that the testing of your faith develops perserverance." James1:2

                                Diagnosed with IC 3/2007
                                Endometriosis w/ laproscopic surgery 2003 and 2007
                                Hydro, Cysto, urodynamics testing, and many instills
                                IBS 1998
                                Current Medications: Elmiron (200mg morning and night), Vaginal Valium Suppository at night, IF 3 WAVE Stimulator, Cymbalta, and birth control

                                "Thank you to all for your support. I have been able to live a more normal life thanks to all the information found on this site and the angles I have encountered."
                                THESE ARE THE TWO LOVES OF MY LIFE!

                                Comment

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