Hypophosphatemia & oncogenic osteomalacia

Wow, you and your husband have been through a lot.  I had partial and total hip replacement and have not fully recovered.  I will ask my doctors about avascular necrosis again. 

It's very interesting that you found that 200 of around 400 cases have been diagnosed in the last 10 and about half of those were in China!  I wonder why.

Thank you for your words of encouragement too.  My hope is that God will bring something good out of this for all of us.  ( :

 

Hello. We were struggling with my husband's phosphorus level as well. We have learned through multiple testing in several days that his level fluctuates up to 2 points between doses which is every 6 hours. He is taking 2000 mg daily plus eating a high phos and potein diet. When we couldn't keep his levels above 1, the Dr added calcitriol to his medicine. He is not taking .5 mg three times a day. That helped a lot. Ask your doctor about adding calcitriol.

I'm sorry. That was supposed to say that he IS taking .5 mg of calcitriol three times per day

Thank you rebeccacorprew! I will definitely ask. Do you know how to establish a diagnosis of TIO vs renal phosphate wasting? My FGF23 levels were normal a year or so ago. I am curious for a long term solution to keep my levels up and my life normal. Thanks for your reply. Wishing your husband all the best.

Did you have your Vitamin level checked? His was low and they corrected that with 1000mg per day. And as far as the diagnosis, our Dr said that there are some instances where the FGF23 level is normal when taken through a routine blood draw, but that when it is taken locally sucjlh as in a joint , the level is elevated. He has been diagnosed with TIO, however they have not located any tumour. And they are now also evaluating him for Hypophosphatemic rickets, which is an adult onset of rickets. So even though we have a diagnosis, they are not stopping there. I don't know where you live, but we have been accepted into the National Institute of Health in Bethesda Maryland. Dr. Michael Collins will be studying and treating my husband. Look him up online. Also, go to NIH.gov and read some of the case reports about TIO and Hypophosphatemia. They are very informative and interesting.

Thank you so much! Yes, I have had my levels checked many times over the past 4-5 years. they are always low, sometimes low normal, even on 1000mg. I appreciate info on a a dr that treats it. I have been searching for anyone who knows about it. Thank you for your reply.

Hello missyd1981,

I am so happy to hear that you have had such a good experience with the NIH doctors.  I think I be considered "cured" since the tumor was removed and labs are mostly normal, but I still have symptoms/pain. 

I live in Illinois and there are no  oncogenic osteomalcia specialists here.  Do you know if any of the doctors would be willing to see me even though the labs are normal?  I would be happy to get on an airplane for a visit.

Thank you so much for your help.  I wish you all the best! 

p.s.You can private message me too.

I'm sorry I'm not sure how to reply privately. How long have you been considered "cured"? I'm sure they would be willing to talk to you. The doctors are Gafni and Collins. I just got back from Baltimore doing this new drug study. If you know how to privately message me go ahead then I can reply from there... Be blessed and good night...

I still follow this thread I have had symptoms for 14 years diagnosis of oncogenic osteomalcia for 13 years it's been a long road finally seeing some hope. Any questions please ask.

Thank you for replying missy1981. I was told this was a rare condition but I honestly felt like the only person in the whole world! It is certainly reassuring to find other people in the same situation and I've been reading the posts in the thread to gain further insight. I've been on medication for about 3 years but have had issues much longer. The FGF-23 was normal a couple of years ago so that was the end of investigations, so just to take phosphate sandoz daily indefinitely now. Currently on 6x 500mg tabs and also some Potassium. Of late the levels have been unstable for some reason, which just adds to the fun! 

Not sure about potassium levels when my phosphorus level is really low I get severe muscle cramps which can also be from being dehydrated with the experimental chemo I'm on I get that way very easily. There has been just over 300 cases of TIO since 1947 in the world. Most feel that is very under diagnosed though. But potassium is not something I ever heard of with all this. I have gotten the pleasure to meet one other person that has this disease. But every time I see the doctors I learn something new with it.

My goodness missyd1981 experimental chemo? I don't envy you but I do hope it brings wonderful results for you. Are you in the US? Some of the posts I've read seem to show a more educated and supportive approach to this in the US. 

I'm assuming that I am in the same boat as others here as my GP eventually told me (after pestering him for answers) my unusual phosphate problem was most likely a very small benign tumour. So small that they wouldn't even search for it. And my phosphate supplementation would be life long. I do have problems with my spinal joints (lower back + neck) but the Dr thinks this is unrelated...I have to be honest and say at one point I thought I was dying, the medics have been very cagey and I knew something wasn't right. 

I had hoped that my low potassium was related to taking the phoshate supplements as I was told one can lower the other.

I certainly know I feel very bizarre when my phosphate goes too low. It's gone seriously low twice through poor monitoring and I ended up in hospital recently because of it. I get off balance, woozy headed like I could faint, feel spaced out and every touch is painful. Can't even tolerate the cat sitting on me. Even with phosphate supplements I've never been able to get a 'normal' range serum level but I'm much more active now in asking for regular blood tests so the level doesn't fall too low again. That ain't pretty  

I also have to take Vitamin D and I'm currently working on supplementing vitamin B12 as I've been a vegetarian for over 35 years (and only now learning what my body needs!) 

Thanks for replying, I'm so pleased to hear from someone else. Good luck to you with the chemo and be well.

You need to ask them about a dototate scan and an octreotide scan. The dototate scan is more popular where u are then over here I've never heard of the doctors not wanting to look for the tumor and I would be finding a new dr. I fought them like crazy when this all first started with me they thought I just wanted pain killers. I was on phosphorus supplements but my stomach didn't tolerate them well. I'm seeing 2 doctors at national institute of health in Bethesda Maryland. Like I said everytime I see the Dr's I learn something new. Not sure how much you know about this but this is 2 strands of DNA that didn't join correctly and mutated to form this tumor. I named mine Timmy so when I get really down and stressed I have something to yell at. Thank you for the good luck the idea of the chemo is to calcify the tumor so we can find it. The neck and spine don't let them tell you it's not related my spine and neck have compressed I have shrunk 3/4 inches over the past 14 years. Don't let the doctors tell you they won't look for it. Try and find yourself a good endocrinologist.

Thanks for all the information missyd1981. You are right, I need to get back onto the doctor and make them help me. I assumed that it was standard not to look for such a small tumour after being dismissed when asking for proper scanning. I will follow this up! I've never heard of the dototate and octreotide scans so thank you for that.

I love the idea that you have named your tumour. It does a focus to direct at. I think if I named mine it would be rather a rude name it got

I understand now how the chemo will be a great tool in finding this little horror now. Is that a long process of treatment to calcify the tumour? It makes so much sense to do this course of action, I wonder why it can't be standard treatment, certainly over here in the UK.

I had to build up the phosphate supplements gradually. I was initially given a high dose that made me feel very poorly indeed. I'm currently on 6 tabs spread throughout the day and so far so good.

I'm going to raise proper scaning and my spine/neck problems again with my GP. I did pay privately to see an endocrinologist about two years ago but unfortunately he said I was too complicated for him and was most unhelpful. But that is another route for me to explore again with a different doctor.

I wondered where all the other people have gone that were contributing to this thread. I see that a lot of the posts are pretty old, perhaps they have moved on to other sites.

Thank you very kindly for all the information, you are indeed well informed! Say hello to Timmy for me, tell him his days are numbered

Never give up even what the doctors say to you have to be aggressive with them. It sounds like they are very hands off in the u.k. I'm not sure how long it will take to calcify the tumor the doctors don't know either. The chemo I am taking isn't even on the market yet it still has a serial number I have heard 6-9 months the other patient has been on for over a year. The side effects are pretty bad so I'm not going more than a year. I'm actually getting ready for another round of scans in the next month-6weeks. Timmy has eaten away at my pelvis to the point at 34 years old I need a hip replacement but they can't until we get h out.The good news I can give you is if you have kids this is not hereditary. That was my biggest concern for my kids. I hope that any of this information has helped you. I encourage you to be as aggressive as possible with the doctors.

Good luck any advice I can give to help I'm here.

Melisa

Hi Kenny, I still follow this thread as well. I have renal phosphate wasting as well. My FGF23 numbers were in range after doing bloodwork recommended by the doctors at the NIH, so they would not investigate my case any further. I hit a dead end around a year ago, so I too have been trying to get by on supplementing multiple times per day. My levels haven 't been in range for 5 years or so, even on supplements. I was told by the NIH researchers by phone that they think I have some kind of kidney damage which caused this condition. I have yet to find a doctor knowledgeable enough to follow and treat my case. It's a tough road for sure.

If your fgf levels are normal it means you don't have a tumor. If I were you I would contact a renal doctor. If it's just the phosphorus levels though from everything I have learned and researched you dont have the same thing. Kenny72006 have they checked your fgf23 level? See what those numbers are.

Hi kenny72066,

I know we have much in common, but different symptoms, physicians and experiences with this rare condition.  My FGF23 levels were in the high average range-not high and I did indeed have a tumor.  When it was removed the FGF23 became normal.  It would be so nice if we could have an tumor induced osteomalacia day where physicians, patients and families could share information.  It would be so  good for our very rare and special community!

 

Thanks Melisa, I will indeed be following your advice and be more assertive with my GP. I looged in last night to send you a reply but it didn't go for some reason.

Wow, I can't believe that you are needing a hip replacement at only 34, poor soul. I really hope that when you go for the next set of scans that perhaps the tumour will show itself and you can get things moving and on your way to recovery. I don't have any kids but it's good to know that the condition isn't hereditary for all those who do. 

I'll report back after I have been to have a chat with my doctor. I'll need to prepare beforehand as he is always so dismissive but now I have more information on my side Thanks.

Hi laurajill, your circumstances sound very similar to mine. I can't get my phosphate levels within range either despite ever increasing doses of supplements. I was told my FGF23 was 'normal' but still told I had a small tumour somewhere after I really pressed the doctor for some sort of answers. The blood tests seem to show my kidneys are working ok but I worry about taking the supplements long term and what that might do. For now however I really need them and I never miss a single dose. 

Nice to meet you and thanks for replying

Hi Belleek bones I was just saying to laurajill that my FGF23 was reported back as normal but they still said I have a tumour. I'm really pleased to hear that once the tumour was removed your FGF23 became normal. Do you mind me asking how you felt after the tumour was removed? Did you feel back to your old self? Are you in the States? I think I might need to move, treatment seems to be better in the States.

I'm going to find out the actual numbers for the FGF23 Melisa. It was tested about two years ago at the hospital but I'll be able to find out what the actual result was.

Hello kenny72066,

I'm sorry it has taken me a while to respond.  The blood tests returned to normal for the most part.  (I have other health issues too). In the days after the tumor was removed, I felt pain all over and could not leave the bed.  I was taking very high doses of hydrocodone too.  (Thank God I am off of them now completely.  I take Ibuprofen daily). 

I "graduated" to the wheel chair after a week or so, months later I primarily used the walker (frame) to get around at home. After about a  year, used the cane at home and walker out.  It has been four years since the tumor removal.  I now use the cane at home and out when I have pain. 

I don't seem to be the kind of TIO patient that is featured in the medical journals bouncing back immediately after the tumor is gone.  I am very grateful to be able to walk without any assistance now at home and free of narcotic meds.

As I mentioned before, I don't know if my experience is typical or not and that is why I wish there was TIO community of some sort with physicians, patients and familes.  On bad days, I feel as if I am being judged because I haven't completely recovered.  I think some of it has to do with bone turn over which takes time,but no one seems to know for certain.

I hope I am not being a "downer"-I have improved so much!  I am in the USA (Chicago).  My nephrologist is coordinating my care along with a Mayo Clinic doctor.  He has seen a couple of patients with TIO who now go to the Mayo Clinic in  Minnesota. They seem to have bounced back quiclkly.  One man is back to delivering the mail!

I wish you and everyone good health and happiness! 

Thank you Belleek bones for your detailed account of what you have been through. You sure have been through the washer! I hope that the doctors coordinating your care can improve things for you further and really get you the improvements that I understand other people have enjoyed, even after four years after the tumour removal. I wonder if your continued difficulties are due to the operation to remove the tumour, depending on where is was located.

The Mayo Clinic in Minnesota seems to crop up a lot, I wonder if they might open an outreach Clinic here in Scotland? I am waiting to find out the result of the FGF23 test conducted a couple of years ago. I was told it was normal but I'd like to see the actual numbers. I may even ask for a retest - wish me luck with that one! My doctor here is so laid back about the whole thing, which is frustrating when I want answers and to be taken seriously. Taking all the Phosphate supplemantal drinks everyday is a task in itself. On the rare occassion I venture out I have to take a drink with me in glass bottle so I don't fall behind in my routine. I'm sure people think I am a secret drinker, or perhaps a raging alcoholic! 

I also have other conditons going on. Of significance is a vitamin B12 deficiency (including low Iron and vitamin D) which I blamed for all my Phosphate drama before slowly realisng that they are two seperate problems. 

I understand what you mean about feeling judged but you can only do what what you can do and no more.. Going by what you have written I think you are doing wonderfully well.

Thank you again for telling me about your experiences, I appreciate it. And sorry for just replying also. All the best to you for now, Kenny.

I have been thinking for years that there had to something all of us TIO patients had in common. Kenny I know from experience your phosphorus could be causing your low iron. With every person being different and not being a doctor myself I can't say for sure but they linked mine to the TIO. I am currently working on getting an online support group started for patients like us. I have Scottish heritage myself and so far that is the only thing I see I have n common with anyone. But I've never discussed common factors with anyone either. I am in the process of getting in touch with a patient with our condition his is even worse than mine as it multiplied and turned to cancer. Hopefully by the end of the year I can figure somethings out with that though. Good luck.

Beleek I'm sorry that things haven't improved quicker for you I'm still a little surprised that they wouldn't discuss further things with you at NIH and I will keep that in mind as I venture down there later this month. Bless you all.

missyd1981,

I have a question that may seem a bit out there. I'm trying to figure out if we (TIO patients)  have a common denominator too.   Here goes..my heritage is Irish and a little Scottish.  Could a celtic lineage be a factor in aquiring TIO?!    I feel a bit silly for saying that, but I wonder if we compare what we have in common if we could discover what might cause TIO in the first place.

Kenny

Thank you for your kind response. I have had 2 hip surgeries as well as other surgeries and procedures.  My friends call me the bionic woman! I think I remember another person mentioned a very good doctor about a year ago.  This is the info her provided- "Dr Haq,,Rheumatology at Brighton and Sussex Univercity Hospital. He is very patient focused and goes far beyond what can be expected from him. Simply, he is the best doctor I have ever come across".  I hope this will help.  It's so important to find a doctor who cares.  Please keep posting! 

All the best!

Thats what I have been wandering for years. I'm the type don't tell me it's like this just because give me a reason. There is in thing I have blind faith in. I'm scotch Irish and native American I'm sure there is some other things but I'm an American mutt my parents used to say. Mine started in my very early 20's, I'm Caucasian small stature fair complected I'm also a we believe type 1&1/2 diabetic. I was bulimic I don't even know where to start on what we all must have in common that so many others don't. I know one patient is middle eastern. So again just not sure. I dont like to think of coincidence.

Missyd1981

OMG! Thank you for the information!  I was in good health before TIO except for monthly migraines and a ganglion cyst on my left wrist. I was a few pounds over weight, but did not have an eating disorder.  (I know how difficult that can be.  My best friend in high school had anorexia-it affects every part of your life).   I have struggled with depression and some anxiety.

When my symptoms started we discovered that I had anemia, precancerous colon polyps, uterine cysts, pineal gland cyst, pituatary microadenoma, adrenal gland adenoma, hyothyroidism, and of course hypophosphatemia, hypokaleamia etc...I hope it is good to compare notes.  I suspect that with my history of cysts and benign tumors that there must be a connection with TIO. 

Thanks again for the info. 

God bless you!

I had hypothroidism, ovarian cysts, I've struggled with depression for almost 20 years anxiety issues for several years and about a year before all this started I was diagnosed with debilitating migraines. When I was 15 they say I had a mini stroke. I'll have to ask the other patient some of his history. I know the Dr's have taken complete medical history of all of us but I haven't given up in something in common

Missyd1981,

You have been through so much at such a young age!  I hope that if we find what causes TIO we can then know how to prevent it.  I wish you all the best and please let us know how things go at NIH!

Ty beleek I think all of has been through way to much. Keep the faith we'll figure something out...

Hi Melisa, thanks for the iron > phosphate link. I never knew that. I assumed my low iron was caused by my vegetarian diet, and poor appetite. 

A support group would be wonderful It is incredible to be able to speak with people who understand all this.

I'll come back on shortly as I'm rather tired just at the minute. I've been searching through some medical files of mine looking for the FGF23 details but I'm disappointed to find the doctors I've seen in the past have put my chronic phosphate issue down to hyperventilating! I'm rather stunned to be honest. That was written two years ago and so incorrect. I've never hyperventilated in my life. How can that be written through my notes multiple times (a blood test proved this isn't the cause of the low phosphate) and the GP said it was a benign tumour causing it yet there is no mention of that. 

I'll be back shortly after a sleep. Scottish heritage? I like that

Don't forget those can be reasons for the low iron also but mine was linked to my phosphate issue. Hyperventilating yea just not sure how that is linked at all. I sure wish u could come to the states most of the doctors seem to try and help over here they get just as frustrated as we do

Hi Belleek bones,

The bionic woman right enough, what a lot for you to endure.

Thanks for the info about the docotor from Sussex. I'm going to see my GP on Monday morning to challenge him on my treatment, or lack of it! I want the diagnosis confirmed properly and take things from there. 

I hope you are doing ok.

Hi Melisa,

I like the idea that the doctors you have in the States are genuinely concerned about patient welfare. Isn't that just how it should be. The priority for doctors this side of the pond seems to be in sticking to guidelines and compassion seems to be very thin on the ground. My own experience of the NHS has been rather horrendous as they say I'm 'complicated'. 

Apparently if a person hyperventilates it temporarily lowers phosphate levels. So I've been hyperventilating for 4 years now Total rubbish. Just lack of knowledge on the behalf of the Consultant.

I was just saying to Belleek bones that I'm going to see my GP on Monday morning to fight my corner. I hope he is ready because I am. The information I've received from speaking with you guys has really helped me feel confident. Thank you.

Kenny,

I wish you all the best.  Stay strong-there is a growing TIO community supporting you!

 

Hi Kenny,

I have not been on this site for a while. I live in the UK as well. Unfortunately, I have known I have has this for 8 years now. My symptoms are very similar to yours. Apart from numerous fractures it has badly affected my lower back and neck. So far I have had four operations on my lower back, the last one they inserted pedicel screws and rods. The two operations on my neck were to help stabilise the vertebrae. I am now waiting to see if I need another one to open the holes where the nerves come out.

As for being rare, I understand that there are 3-400 new cases worldwide each year.

i have had umpteen scams including core tide, PET and various others but no luck in finding the tumour. I think I now have this for life.

I wish you the best of luck and if I can help please drop me a line.

Thank you Belleel bones. 

The sparks were flying the other day when I seen my GP, the 10 minute appointment lasted 25 minutes. I was determined not to be fobbed off again thanks to the information and support I have found her.

Rather stangely when I demanded a proper diagnosis (as a starting point) he waffled and said I must accept that I have a rare condition that no-one knows anything about. Well, I don't accept that! He then asked me who had told me 'this incorrect information' about having a benign tumour. Actually...it was YOU! I recounted his previous words to me and he looked stunned. I asked him if he was trying to send me insane?

Oh he also said that low phosphate isn't associated with any tumours, a downright lie. 

Anyway after 25 minutes of confrontation with the doctor he finally agreed to send me to a kidney specialist to rule out a kidney malfunction, and follow up from there. A little frustrating but I suppose I need to go along and rule this out in order to make any progress. 

He tried to send me back to the Biochemist who said I was hyperventilating but I refused point blank. 

This is going to be a slow process to get any answers and a proper diagnosis, let alone effective treatment. But it's a start isn't it.

Hi Cator1956,

Thank you for your message. So you are 8 years affected, I'm 4 and it is driving me nutty It's like my whole life is taken up with these supplemental drinks and being in pain. A friend was being funny the other day and came up behind me to give me a shoulder massage and I nearly went through the roof with the pain. Poor soul trying to be helpful!

I haven't had any scans, only multiple x-rays rays years ago that showed a twisted spine after many years of me complaining of a sore lower back. Now my lower back, neck, shoulders and hips click and jam, which is extremely painful but I don't think I have any fractures. The doctor said it was good I am of such a slender build so as not to put extra strain on my joints and just to take painkillers and it was osteoarthritis. I'm only in my mid forties! 

My heart goes out to you for having to have gone through all these surgeries. Did all that damage happen during the 8 years you have known about the condition? 

Do you happen to know if your FGF23 was abnormal? I was told mine was normal and so far I can't find any referrence to it in the medical notes I asked for. 

I was just saying to Belleek bones that I went to my GP the other day to put my foot down and get a proper diagnosis. I've to see a kidney specialist first to say my kidneys are ok. It seems a bit mad really as I've always been told my kidneys are fine but there you are. I'm thinking some action is better than none?  

Thank you so much for taking the time to let me know your experiences, it is so valuable for me to hear from others and try and make sense of this. All the best.

Good for you Kenny for standing up for yourself. How long till you can see a nephrologist? I don't know how insurance works over there but I'm thinking a good rheumatologist and or endocrinologist would be a really good spot fpr you to try. Please keep your head up I'm glad you realize this Dr is blowing smoke up your fanny. Keep the faith you have a whole new world pf people behind you rooting for you.

Congratulations Kenny!

Very well done!  I'm so glad you challenged your doctor and persuated him to refer a kidney specialist.  I

Most doctors are heros and literally life savers, but they are only human.  Just because a person has a rare disease and the doctor can't solve the medical mystery, it doesn't mean that it's okay to give up-especially if a person is suffering! 

No man is an island and he should have reached out to his medical colleagues a while ago.  But, better late than never.  I hope that he and the other doctors can learn from this. It's great when you meet a doctor who relishes solving medical puzzles,  I hope your kidney specialist is one of them!

All the best!  

Thank you Melisa, kind souls you all are. 

It was only after speaking with you guys that I got the fight back to confront him. He didn't know who to send me to he said. I asked for a rheumatoligist but got a nephrologist I have previously seen an endocrinologist (maybe not a good one!) who said she knew something wasn't right but it wasn't within her area of expertise. I asked her to send me to the right person then and she didn't know who either! She only referred me to a complimentary health centre. So I kind of go round in circles, all the while my doctor wants everyone to believe I'm just crazy. 

At least now I'm feeling empowered and the fight is on! 

Thank you. I hope things are going ok for you? Have you been for the next scan yet?

Oh thank you Belleek bones. That is very encouraging. 

It's only thanks to you guys I found some strength to try again, and I'll keep going now.

And all the best to you also.

 

I go the end of the month for some more scans I had given up to, Someone made me mad enough I found NIH. Never give up hope. The only thing that has kept me fighting is my kids. I refuse to give up anymore. And it is so much easier said than done especially when no one else seems to care. The only advice as to who to see is the same type of doctors that have helped me. I do know if we give up there isn't anyone else that will fight for us. I'm still looking into how to start an online support group.

Hi Kenny,

i was very lucky that my rheumatologist had seen this when he was at the Royal National Orthopeadic Hospital. You might want to get your GP to send you there. He told me they saw cases from all over the UK, not that there were many but you know what I mean.

The surgeries I have have had were all directly as a result of this. It appears that this for a long time before being diagnosed. Like most men, I did not go to my GP when I should have.

I seem to be constantly waiting for surgery now. My rheumatologist has departed to Australia and no one seem to know what to do now.

Like you, I find the constant pain the worst thing.

Keep going and don't give up. 

Sorry for just replying Melissa, I haven't been keeping very well. 

Good luck with the scans coming up at the end of the month. It would be great if they find it this time around! You are so right when you say about keep fighting. Now that I'm more informed I'll sure keep fighting! It makes me mad that so much time has passed and I would have just been left to suffer indefinitely if I hadn't come across you guys.

Would it be possible to do a support group through Facebook maybe? I know that there are other groups on there. 

All the best again for the scans! I'm quite excited for you

Hi Cator1956

Apologies to you also for just replying. Just been struggling a wee bit and haven't been on, of course then I forgot my password!

That is useful to know about the Hospital, I'll keep that in mind as my GP was at a lose where to send me. You know I dont even know how long I've had this problem, I think it was purely chance that my abnormal bloods were picked up around 4 years ago. The latest drama to unfold is extremely high Cortisol levels, caused by steroid use the GP thinks. 

I'm hoping that I can get some remedy before my joint issues become more serious. I certainly don't want to be doing the surgery thing but to be having so many joint problems in my 40's who knows. 

I hope that you get another rheumatologist very soon to continue your care. It is quite frustrating when a doctor you know moves on.

I won't know any more until I have seen the nephrologist and had my kidneys checked. I've previously been told they were fine but this is part of the (long) elimination process leading to a proper diagnosis I hope.

Best wishes my friend.

Hey all

Saw this topic (from 2007. Wow!) and had to reply!

After 6 yrs of tumbling from one examination in another (one hospital after another) finaly know what is wrong with me! Went from pulmonogist to doctor of internal medicine to psychologist to traumatologist to orthopedist to another doctor of internal medicine to finally...

my endocrinologist!!!

After blood examination and a bone biopsy she finally concluded I have tumor induced osteomalacia!

I thought I must be really insane to have such an unclear condition but luckily I am sane, just a bit fragile...

It all started 6 years ago with 5 broken ribs after coughing for a month (had an alergic reaction to propellant)

In the meantime I broke my back (L2), more ribs and my foot. My ribs are still broken after 4 yrs.

My body hurts and I feel very very tired.

They put me on strong painkillers and on vitamine D.

Last summer they found a small binign bonetumor in my leg.

Since they cant tell me if this is the cause of my illness I wont have them remove it, for my bones don't heal after breaking and I am a frequent hiker, I don't want to stop hiking for nothing, I want them to be sure before operating me.

I am looking for other people with our illness.

I want to know how they are treated, how they live and if there is a patiënts association for people with this disease.

Do you know if there is one?

And do you know how many people are suffering from tumor induced osteomalacia?

I feel like I am the only one in the whole wide world.

Can you please respond?

With love...

BlueMerle43, the Netherlands, Europe

Blue I've had the condition for 15 years. They still have no found my tumor. The last known number was about 300 diagnosed cases since around 1950 in the world. Not sure how accurate that is but it is not even recognized by NORD national organization of rare disease. I have been on a chemo drug since Jan 15 this year it is keeping my levels up but did not calcify the tumor like we hoped. I am talking to another patient about getting an online support group going. But we haven't had alot of opportunity to work on it with both his and my health being poor cause of the chemo. Your not the only one though I promise. I am hearing more about it. Good luck. Have dr do biopsy. If they really found get it out it's the only way to completely fix this and God has blessed you tremendously if what they found is it.

God bless ur fellow TIO patient

Melisa

Hi,

welcome, you are not alone. I was diagnosed about ten years ago. I had two operations on my lower back then found I had pain in my knees and ankles. Then followed an MRI. The next thing I knew was a phone call telling me to go to A&E as I had broken a hip. When I got there they said no, no you have broken both hips, fractures in both knees, both ankles, sacral joint, cracked hip socket and a number of small fractures of the spine. My mouth dropped.

my rheumatologist did tests and diagnosed me and started me on calcitriol and phosphate sandoz. This has helped but what we did not know was the effect it had on my spine. I have had three further lower back ops and three on my neck as my vertebrae were squashing my nerves where the bone was soft and giving way. They have told me that I cannot have any further ops on my lower back and that I will always be in pain.

I was told that there are 300-400 new cases worldwide each year but this is a guess as no one really collates the figures.

I do hope that you are nowhere near as bad as I am and that you get help.

Forgot to say, after all the scans I have had they have not found the tumour.

Whenever I go into hospital I see people who are worse off than me so I don't feel as I have too much to complain about.

I wish you well and hope that you feel better soon, try to be positive it helps a lot.

 

Hi Cator1956, Melisa and all the others... 

I have quite a hard time finding information about this disease and getting to know more people suffering from TIO.

Therefor I started a Facebookgroup today, the name of this group is 

Tumor Induced Osteomalacia

It is an open group so everyone can join. 

I would like to invite you all to become a member, to wrote your story, tell us what treatments you had, what worked, what didnt work, 

Maybe just let us know about your average day, just all the things you would like to share with people that know what it is like to have Tumor induced osteomalacia.

please feel free to join. looking forward to meet u all in this new group!

with love, Josje Toby, BlueMerle43

I just found this site. I have osteomalacia and hypophosphetemia, but they can't seem to find the underlying cause. I'm waiting to be seen by a rheumatologist and endocrinologist. Lucilles description is exactly how I feel. I've had to stop working as an elementary teacher because I'm in so much pain and can do so little now. I'm wondering how you both are doing now? Has any treatments worked?

I'm in the US. It's funny I feel like I find more info coming from the U.K. on this.

I am on an experimental chemo that is keeping my phosphorus level Ina normal range when I'm on it. But there are alot of side effects to it. Another patient has been taking oral phosphate and calcitriol and that is helping him. For a while I was taking oral phosphate laxative over the counter at Walgreen's and calcitriol but that didn't get my levels completely normal. I see a doctor at national institute of health in Bethesda Maryland there is not to many groups that study this condition though.

Good luck.

My doc said removing the tumour is how your bones can heal. 

Thanks

 

I am getting ready to have a scan to find the tumours. They will remove and as I understand the bones will begin to heal once they aremoved

Hello Donald89437,

I was diagnosed ten years ago. Since then I have had all sorts of scams including ocretide and pet scans. However, none have found the tumour.

My understanding is that the tumours can be as small as 2mm. They release a protein called Fibroblast Growth Factor 23 or FGF 23 into the bloodstream. When this gets to the kidneys it stops them producing Calcitriol. It's Calitriol that bonds calcium and phosphate together to make bones. If the tumour can be found and removed the bloods will return to normal within hours and the process of making bone can begin.

A word of caution, they have never found my tumour so I take phosphate sandoz and calcitriol daily and gradually my bones have hardened.

It seems that mine was an advanced case with over 20 fractures to date no now problems with my spine gradually collapsing onto the nerves. Mine is a rare case in a group of rare cases so yours may not be anywhere near as bad as mine so don't panic.

I wish you the best of luck and hope that your tumour is found.

Thank you. it has been 6 and 1/2 years for me I lost a hip which we replaced and they also say I have multiple cracks in all my joints from the hips to the feet. I have lost over an inch in height and have been diagnosed with Stenosis in my lower back. I hope they can find the tumour. Wishing you the best of luck in your recovery

Were they able to do the replacement without finding the tumor? I need both of my hips done but no one around will touch me till they find it. I've had multiple fractures in all my ribs both feet and ankles both wrists and 5 in my pelvis. I've had scans done from head to toe for the past 14 years and still nothing has been found I have lost about 4 inches of height. I tease my doctor and tell her that I am going to be nothing more than head arms and legs by the time they find this. (all my height loss is my spine)

They replaced my hip without finding a tumour. The Doc was very careful to ensure the bone was solid enough to hold the implant. It's been 2 1/2 years and so far so good.

We are the incredible shrinking people LOL.

Take care I'm off

Don