Hello everyone. I am praying that someone here can give me so answers- apparently, the dr's cant. As you know, I am only 26..I have been having bone/health issues for almost 3 years now. It all started after I had my twins. I have spent so much money on testing and still here I sit with no clue and no one to help. I have so much bone pain- it started in my forearms and shins now in my toes and fingers as well. My hip has recently started making a grinding noise everytime I move and that scares me. I have low vit d (which apparently is very common) but I have low vit d in BOTH forms. I actually went to Mayo in December and they said it made no sense that both forms of vit d would be low UNLESS I had these issues since childhood. The endo said he wanted to recheck in case it was a lab error and keep cutting it in half to make sure it halved each time and that it wasnt a mistake because according to him it was very strange. He said if it came back low yet again he would not feel comfortable leaving me without more help and would want to see me again. Well, it came back very low still yet but he told me he was simply at a loss and did not know where to go from here. I asked if this meant kidney issues and he said possibly but all my kidney function test have been normal. He basically told me to go home and wait for the symptom thats going to make this all come together. I also have heart palpitations, brain fog, headaches, vision worsening drastically, dizziness, weakness, fatigue, irritability. The main thing though is terrible bone pain. I have been tested for everything including MS, lymes, lupus...you name it. The only things that have came back abnormal are my vit d, my calcium is always a little high, my beta-crosslaps (CTx) which are bone turnover markers are VERY high (the normal range for my age group is 25-573 and postmenopausal is 104-1008)- mine is 763! Also , my DEXA scan is bad, bad.
Someone please tell me what I am supposed to do- I have been everywhere from Mayo to Chicago to St.Louis. The dr's expect me to sit back and wait for something terrible to happen. I am on NO medication. Is this normal?? I was just reading up on parathyroid disease and it sounds like me 100%. What do you think? How can I make a dr pursue this? I have had a thyroid U/S before but it was okay - I have been reading that U/S's arent usually very effective in diagnosing this. They havent found any other answers so I dont see how they cant at least try to look into it. It is sad to think that - that may be all it is and I could have a surgery to remove it and feel like a normal 26 year old again. My bones feel like they are rotting. Please help me. Thanks so much!
Oh, would like to add- since the vit d def. and the endo saying could mean kidneys issues-since seeing him I have found out that my dads side of the family has a lot of kidney problems. My sister who is only 17 has had kidney dialysis twice and my first cousins have a lot of problems with kidney infections and kidney stones.
Last edited by HeatherElliott; 03-12-2010 at 02:33 PM.
Hi Heather, please don't think nobody wants to help you, it just may be that no one can suggest anything that your dr. hasn't already tested. I was going to suggest thyroid, but that's been covered too. Like your dr. told you, you may have to wait till something shows up that can pin point a cause. Bone pain isn't usually associated with osteo unless there is a fracture.
My one suggestion to you would be to try and relax. I know that's hard to do when there are so many questions, but stress isn't good for any parts of a body. Taking care of twins must keep you pretty busy and as you know kids can pick up when Mom isn't feeling good. I do have one thought...with the grinding sound you're hearing have the dr. checked the cartilage around the joint? From what you've wrote there could be several causes, but until they find something definitive there is nothing to treat. Just hang in there, do your own researching and if one dr. can't find an answer try another one. take care...phyllis
Thanks for your repsonse. My concern is my calcium is always high normal-high. My beta-crosslaps are VERY high, both forms of vitamin d are terribly low. The grinding in my hip scares me because thats where my score is -3. I clearly have osteoperosis but the dr doesnt want me on meds. Wont this continue to get worse without meds? I can not take a risk of breaking my hip at 26 with 3 small children. As for the parathryiod- from what I have read there is a HUGE possibility that this is my issue. Osteoperosis, elevelated CTx, high calcium...I did have an u/s but it was performed by a hospital technician and from what I read those are inaccurate most the time. I feel like there is no noubt that this is whats going on with me but how can I convince a dr of this? I dont even feel like I trsut mine when he is telling me I shouldnt treat my osteoperosis.
How can I have high calcium , low vit d, and osteoperosis if its NOT my parathyroid. I should mention it is my serum calcium that stays elevated-to me this says something is off because if my calcium in my bones were high I wouldnt be having all these issues so there is something taking it out of my bones and putting it into my blood (i.e. parathyroid)?
Last edited by HeatherElliott; 03-13-2010 at 11:02 AM.
Hi Heather....So sorry to hear of someone so young, with small children to care for, having these problems. In any case, years ago I had borderline high calcium and high parathyroid levels. Did they give you a blood test, to test your parathyroid levels. Both of these symptoms lead to osteoporosis.Also to all kinds of body aches and pains. If your blood levels of PTH turn out high, you then will need a Sestimibi Scan to search for a tumor. I had this. An ultra sound for this is not accurate enough. The best would b an MRI, or a Sestimibi Scan. Having high calcium in combo with high PTH can lead to all kinds of complications. If you have an elevated PTH, you need to see a good Endocrinologist. In my case they found a tumor(which was benign)most usually are. They operated and I felt much better. From the info you gave, it sounded as if your PTH levels were never tested. Hope this helps.
Last edited by tomatojuice; 03-13-2010 at 03:11 PM.
Hi Heather...your dr. won't put you on any osteo meds because of your age. The currently available drugs (fosomax, actenol, ect.) are mainly used on older post menopausal women, not women still having periods. You are way too young to start taking drugs that have some serious side effects for some, are now being associated with fractures of the femur and aren't meant to be taken by someone as young as you are. At your age there is time to make lifestyle changes that will help your density. Are you currently doing weight bearing exercises like jogging, walking, jumping? Are you doing any strength training? Do you eat a healthy diet? I know this isn't what you want to hear, but until your dr. comes up with a problem to solve there isn't much else you can do. Try to fit some "me time" into your busy day and get some exercise. You could load up the kids and go for walks, something you will all enjoy.
I do have one suggestion...go to your library and check out the book The Myth of Osteoporsis by Gillian Sanson. Its is loaded with good advice and will help you put some things into perspective. Also keep in mind, (and this is a lesson we all had to learn when dx) that just because you have osteo it doesn't mean that you will or ever break a bone. Please try to relax, stop reading whats on the internet, some of its good and some of it isn't, make a list of questions and call your dr. to get some answers. take care...phyllis
Hi Heather...Believe it, people on here really do care. I am very concerned for you. Please try and find out if your PTH(parathyroid levels were ever tested). Let us know. Can't stop thinking about you. Also lots of things in young people get resolved and heal faster, when taken care of. So try not to stress out. All the best...Dorothy
Were your hormone levels checked such as estrogen, etc? You may have mentioned this but if not I'm wondering if you've seen a Gyn specialist about the osteoporosis. It seems like you've been to all of the best medical centers and still you don't have answers. It sounds like you have a very complicated situation. I hope one of the specialists can figure this out for you. Let us know how this is going.
Thank you all for the responses. Dorothy, you are very sweet! Yes, I had my hormone levels checked though it has been awhile. Everything was normal at the time. I did find out the last time I had my PTH levels checked was in 2008 and it was 41. I know that is in the normal range but I read somewhere that someone had a score of 38 or something and for his age (being young) they still considered it a little high and he found out he had a tumor....am I grasping at straws? I just dont get it. I have ALL the symptoms and there is no other explination. Thanks
I'm sorry I have no helpful advice or information for you, but I understand being in a scary health situation that no one can figure out; I'm there now. I'm praying for you, that you find relief and a doctor that can help you out.