Hypophosphatemia & oncogenic osteomalacia
Posted , 27 users are following.
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
jeff_33804 lucille
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missyd1981 jeff_33804
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Oh I'm sorry TIO is tumor induced osteomalacia it's just another name for Oncogenic osteomalacia. There is one other name they call it but I can't remember it. The way it was explained to me was it's 2 strands of DNA that doesn't fuse correctly they mutate and make a benign tumor.
jeff_33804 missyd1981
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missyd1981 jeff_33804
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karen30505 lucille
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I first had problems with low blood tests for phosphate and D about 3 years ago and was diagnosed for TIO about 2 years and the scans have found nothing yet. I'm taking calcitriol, Fultium D3 and K-phos no. 2 (I couldn't tolerate Phosphate Sandoz) but still have low phosphate levels. The problem is I have had bladder irritation for the last 6 months which started about 3 months after starting the phosphate daily. I was wondering if anyone else who is taking K-phos no 2 has had the same problem. It's making me very depressed and the doctors aren't much help really.
jeff_33804 karen30505
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For me the k-phos doesn't give me any major negative reactions.
Thanks for the info
missyd1981 karen30505
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I never had that type of issue with the k-phos I couldn't tolerate because it's basically a laxative to me. The doctors will not be very helpful with the depression most of them just don't understand it. I do recommend a good therapist they helped me a lite but I also take xanax a very low dose as needed.
karen30505 missyd1981
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ok, thank you for replying. The sandoz is a laxative to me which is why I'm on the K-Phos. It did take 3 months of taking it every day before my bladder started hurting. I've discovered there is another one called K-Phos neutral so I'm going to look into that and see if it will be any better, and if my consultant will agree to it.
missyd1981 karen30505
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karen30505 missyd1981
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jeff_33804 lucille
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Hi. I have a question, has anyone of you guys, had a total recuperation after they found the tumor? 2nd question, what is the daily dose for kphos? I was taking 3 pills 2x day, but now the dr wants me to take 4pills 4x a day. I think that's too much.
missyd1981 jeff_33804
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It is alot but it depends on how low you are. I was on that much but couldn't tolerate it so the had to back me down again. They haven't found my tumor so I can't say from experience but my doctor's have told me most damage can be reversed once they find it and take it out. My hips will remain dead but I would be able to have them replaced and I might get some of my height back. But again can't speak from experience yet. (Fingers crossed)
ida21750 lucille
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Can you have TIO without an elevated APL level and without bone fractures? I have hypophosphatemia and am trying to find the cause. Have been to so many doctors. I want to get the FGF23 test, it seems like that would reveal if I have TIO. I have heard of some who have TIO but not all the classic symptoms.
ida21750
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Sorry, I meant ALP level...
BlueMerle43 ida21750
Posted
hello Ida,
do you mean Alp level? (alkaline phosphatase level)
i dont know what APL is?
on facebook i made a group for people with tio and found everyone has different symphtoms. one has bone pain, one is tired and one breaks a lot of bones.
fgf23 is a very good indicator for tio.
First my fgf23 was380, now, using alphacalciferol it s 80. no difference in bone pain unfortunately.
keep me posted after they tested on fgf23 ok? good luck!
jason38654 BlueMerle43
Posted
Hello,
Actually FGF23 levels are not always an indicator for TIO. My level was tested and the results were not elevated. That lead me to seeing a sub-specialist at a medical university who ordered a PET scan. They located a penny sized tumor above my left knee that was causing my bone issues. My symptoms were multiple stress fractures throughout my body. At one point I was in a wheelchair for almost a year before they put me on phosphorus (Virt-Phos 250) and Calcitriol to help get my my phosphorus and calcium levels back and that helped my bones to heal enough to begin physical therapy to offset the atrophy. It was removed July 2018, and within a week my levels were back to normal and I was taken off all medications.
I had gone through so many tests for about two years prior to that. Genetic tests, cancer tests, etc. About the only test not done was a PET and I would encourage anyone who suspects they have TIO to get one. Unfortunately TIO is very rare and as a result there isn't a lot of information out there on it. I was told that I was only the second time in almost 4 million cases with similar symptoms that TIO was actually the diagnosis.
Let me know if you would like additional information or if you have any additional questions. I would be happy to help as much as I can.
ida21750 jason38654
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Thank you so much for your reply, and I'm so glad things have been working out well for you.
ida21750 BlueMerle43
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Thank you so much yes I will try to keep everybody updated
ida21750 jason38654
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My phosphorus levels go up and down I've been as low as 1.3 and I'm also normal sometimes in my labs . But I feel better the more doses of Phospha 250 Neutral I take . Had your phosphorus levels in your blood test been normal and you still felt symptoms of weakness? Or are TIO sufferers always hypophosphatemic?
jason38654 ida21750
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Hi,
The lowest mine had gotten was 1.8, but most of the time it was in the low 2's (2.0, 2.1) range. Now that the tumor is gone I'm staying in the upper 3's. I get my next lab work done next Wednesday 4/24 so I'll be curious to see what it is now. As I understand it, osteomalacia itself is primarily due to low levels of available phosphorus, calcium, and vit D. TIO does result in hypophosphatemia and usually low levels of 1,25-dihydroxy vitamin D. Have they checked for renal phosphate wasting (24-hour urine collection)? As I'm sure you know, hypophosphatemia can have several causes, but is not necessarily attributed to TIO.
ida21750 jason38654
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My FGF23 came back normal..not sure my Medicare will cover a PET now. My endo said it would have helped. Wish she could just procede with a PET anyway. Renal wasting of phos has been inconclusive with me, sometimes urine studies show loss, some of my studies showed normal levels. Not sure what to do now, bedridden 3 months now in a nursing home at at 44...endo thinks it could be something called Periodic Hypophosphatemic Paralysis too. I'm weak though, not paralyzed. Don't know where to turn next. 😢
missyd1981 ida21750
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Ida that's some craziness not that there is anything normal about TIO. my fgf levels have always been high. the pet scan is not always conclusive. another scan that is not to popular yet is called a dotatate scan. I've been dealing with mine 17 years with symptoms 16 with diagnosis. still haven't found mine I was on a chemo type drug that did help but it was a clinical trial that didnt do quite what they needed it to do. stay positive this is all very tough to deal with.
ida21750 missyd1981
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Thank you for your input...I pray God blesses you with relief soon. You've suffered far too long. Take care... ❤