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Hypophosphatemia & oncogenic osteomalacia

Posted , 27 users are following.

lucille
lucille

My condition, hypophosphatemia and oncogenic osteomalcia started about 3 years ago, however, was not diagnosed until six months ago. It started very gradually with body stiffness that over time worsened to bone and muscle pain and weakness. Was examined by all kinds of specialists who really didn't know why I had so much pain just walking, sitting and getting in and out of bed. My Rhematologist had been very puzzeled by some of my blood test results concerning alkaline phosphates being 3 times as high as they should be. Vitamin D testing showed I was severely deficient. Subsequent examination, blood tests and bone biopsy by an Endocrinologist indicated oncogenic osteomalacia and hypophosphatemia being caused by a tumour somewhere in my body. The tumour gives off something that causes my Vitamin D and phosphates to become deficient in turn causing the bone pain and muscle weakness. Subsequent CT scans and PET scan have not located the tumour. Am taking medications that are helping somewhat. Want to communicate with someone who has this condition or recovered from it. Have questions about medications, rehabilitation and generally knowing about their experience.

1 like, 231 replies

231 Replies

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  • Cator1956
    Cator1956 lucille

    Posted

    Ok,this is my understanding of how it all works. Please don't accept this assessment being gospel as I might be wrong.

    The tumour produces FGF23 which, when it gets round to the kidneys stops them from producing Calcitriol. Calcitriol is the substance which joins calcium and phosphates to make bone. Without it the bone does not form properly and the phosphates pass out in your urine. Taking phosphate supplements helps replace that which is lost and taking Calcitriol helps to make new, stronger bone.

    i have been taking both for several years and have recently been told that my bone is now normal. As they are unable to find the tumour, and are unlikely to, I will have to take them for the rest of my life.

    i hope this all helps. Please remember, this is just my understanding of how it works. If anyone knows better please let me know as I am keen to learn more.

  • tlynng99
    tlynng99 lucille

    Posted

    I am so glad I found this site my husband who is only 34 years old was diagnosed with oncogenic osteomalacia over 3 years ago and they still have yet to find the tumor the only doctor we have found that wants to do anything we can no longer see and the doctors we started seeing in Chicago are worthless so any info or any help would be appreciated. He is no longer able to work because his hip bones are fracturing so often. Hope one of you reach out cause we are at our wits end.
    • Cator1956
      Cator1956 tlynng99

      Posted

      Hi,

      i am so sorry your husband and you are going through this. I can empathise as I broke both hips. In fact, I have had over 20 fractures and am now having spinal problems.

      if you read my posts you will see my understanding of this problem. It has taken several years of taking calcitriol and phosphate supplements but my bones are now back to normal density. 

      Please don't give up hope as there are several of us out there who are sharing similar experiences, you are not alone.

      i wish you both the best of luck.

    • Belleek_bones
      Belleek_bones tlynng99

      Posted

      Hi tlynng99,

      My doctors are in the Chicago area too.  I have been to Northwestern, NorthShore and Lutheran General.  They have been helpful, but so far, I have not seen anyone with a clinical or research interest in oncogenic osteomalacia.  I am wondering what your experience has been.  All the best!  ( : 

    • tlynng99
      tlynng99 Cator1956

      Posted

      Thanks we appreciate it his hips are really bad as well cause he has avascular necrosis on top of his condition but he can't have a hip replacement till they can remove the tumor which they haven't found yet. We have had so many scans done and still no luck. He is on disability right now and I am the only one working and we are trying to support our kids some days I feel like just giving up and he is to the point where he feels no doctor can help him so he is depressed. It is not fun.
    • tlynng99
      tlynng99 Belleek_bones

      Posted

      We have just been to the university of Chicago and saw an endocrinologist there whom we did not like he spent like 5 minutes with my husband and basically said there is nothing we can do at this time the only doctors we have been to that want to help are at the University of Iowa but our insurance no longer covers there.
    • Belleek_bones
      Belleek_bones tlynng99

      Posted

      I am in the process of getting labs and other tests updated.  I am thinking of contacting the National Institute of Health (NIH).  There are a couple of clinical trials going on now.  Even if I don't qualify, I will ask if they could  help find someone in Illinois who has an interest in oncogenic osteomalacia.  If you are interested, the clincal trial link is,  https://clinicaltrials.gov/ct2/show/NCT00024804?term=osteomalacia&cntry1=NA%3AUS&rank=14 or ClinicalTrials.gov for the general website.

      l

      Good luck! (:

       

    • pamela13537
      pamela13537 Cator1956

      Posted

      Good to hear a success story on this condition i have this condition now. I wud so love to go for a long walk one day
    • pamela13537
      pamela13537 tlynng99

      Posted

      I had a PET scan & thats how they found the tumor in me. I had to travel to Australia thou just to have it cause New Zealand does not have a scan machine like that yet
  • tlynng99
    tlynng99 lucille

    Posted

    I did start a Facebook page so just type in the search box Tumor Induced Osteomalacia and it should pop up please feel free to add links and such I haven't figured out how to do that yet.
    • Belleek_bones
      Belleek_bones tlynng99

      Posted

      HI tlynng99,

      I found the Tumor Induced Osteomalacia TIO Facebook page.  It looks great!  I really like the cover page.  lol

  • paolafromfrance
    paolafromfrance lucille

    Posted

    Dear All, here some good news about my condition. After 2 unsuccessul attempts, finally my tumor has been found, thank you to a TEP/TDM DOTATOC 68Ga imagery technique. This is not a standard technique. A personal autorization was needed in order to proceede with this. Then, doctors decided to revove the tumor surgically. This has now be done, since a dozen days. The tumor was localized on a rib, which is not commun. To be sure to remove it completely, a piece of rib has also been removed. First analysis confirmed the TIO diagnosis and my kidney function seems to be back to normal. Phospore level in blood has not recovered immediately, but apparently this can take several days. I have to check it again next week. I keep my fingers crossed.

     hope my experience can give hope to others.

    • Belleek_bones
      Belleek_bones paolafromfrance

      Posted

      Congratulations and all the best for a speed and thorough recovery!  Please keep us informed!  razz

       

  • marlii2395
    marlii2395 lucille

    Posted

    Hi all!

    I am posting on this as my pop has been suffering for three years from what sounds like the exact same condition!

    We are in Tasmania, Australia and so far the closest we've had to answers has been one doctor telling him he has hypophosphatemic rickets. But has done nothing to help treat him except prescribe painkillers.

    His vitamin D, calcium and phosphate levels are all low and he takes calcium and vitamin D supplements but does anyone else know what to suggest?

    He's also had PET scans, blood texts, xrays but nothing but fractures in his feet.

    Please help with how we can help him!

    • pamela13537
      pamela13537 marlii2395

      Posted

      Hi i have this condition & my doctor has prescribed me Phosphate tablets & calcitrol. Im from New Zealand
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