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  • #1

    Hair loss

    I am 23yrs old and it has just been a year since being diagnosed with IC. I stopped taking Elmiron about 5 months ago. I have been on Urimar T and Neurontin for a year. For about a month I have also started taking Elavil and Pyridum Plus. I still don't really see any change. I have had an enormous increase for the past couple of months with neck and back pain, which I live with 24/7. And I have also noticed a severe increase in hair loss. I'm talking about clumps of hair falling out when I wash,brush, or just run my fingers through it. Does anyone have this problem? I am also trying to locate a new doctor. I live in Baton Rouge, LA and am willing to go out of state. If anyone has any ideas or suggest please write me! I want to thank everyone for all their posts, they truly have been a life saver!
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    • #2
      Hi Jennifer
      You might want to get your Thyroid checked. I suspected mine was low bc of fatigue, hair loss and extremely dry skin. (and weight gain) I had my family Dr. do the blood test. It came back that same day as Hypothryoid. I think that IC and FM and Thryoid are somehow related. I hope you find out what is causing the pain and hair loss. Take Care! grouphug
      DanaW

      "Don't quit when the tide is lowest, For it's just about to turn; Don't quit over doubts and questions, For there's something you may learn."

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        • #3
          Hi Jennifer,

          I agree with Dana about getting your thyroid checked out. Having a low thyroid is very common problem for women and left untreated it can cause some very painful and nasty symptoms.

          In my own case, I had IC symptoms, muscle and joint pains, dry skin and hair, sensitivity to cold with cold hands and feet, numbness and tingling in hands called carpal tunnel syndrome, most of the time extreme fatigue, and IBS.

          Over several years, I was always told that I had IC. Then, when I changed my Dr. and found out that I was severely Hypothyroid. Sometimes the thyroid test will fail to show just how hypothyroid a person is. You need to find a Dr. who will treat you for your symptoms and not rely only on the bloodwork.

          I also agree with Dana that having low thyroid and all your symptoms can be connected.

          Take care Silverfox

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            • #4
              My first thought is that you need to see your doctor. There are many things that can result in hair loss. And it it does turn out you have a thyroid probem, it can be diagnosed by a blood test. Most doctors will not order thyroid medications without a diagnosis because the medications can cause symptoms of over active thyroid.

              There is no research study that proves that low thyroid causes IC or contributes to IC. A thyroid screen is not part of the diagnostic process for IC nor is thyroid therapy considered a treatment for IC.

              Sending healing thoughts,
              Donna
              Stay safe


              Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
              Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

              Have you checked the ICN Shop?
              Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

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              I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.               [3MG]

              Anyone who says something is foolproof hasn't met a determined fool

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                • #5
                  :frown: I lost a lot of hair after taking the elmiron for 2 months. My head became very irratated but I am not sure if that is from the hair growing backin or falling out. It seems to have stopped not that I am off the elmiron. I hope it clears up for you, I also suffer from aleppecia areota (not sure about the spelling) but I used to periodicly loose my hair in patches and I have no eyelashes or eyebrows. I am glad now that the only hair I have missing is my eyebrow and eyelashes (and that is mostly from the scarring from the long term hair loss when I was young). I hate lossing my hair it makes me very self consciouse so I hope your hair comes back soon (the only up side, I do like wearing wigs that are different from my hair, sorry just trying to find a bright side). I hope you feel better soon.

                  Angela
                  From Florida

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