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podiecat 01-23-2008 10:25 AM

Hope shattered!!! DEXA WORSE
 
Hi All,

After two years of extremely expensive supplements and trying desperately to think positive about the EZORB and everything else I've been taking and doing, my 2 year dexa came back WORSE!!!

new T scores:

lumbar spine -3.5 (was -3.1)
Wards Triangle -4.0 (was -3.5)
left hip -2.7 (was -2.4)

I'm so depressed!!!

~carol

Canna 01-23-2008 10:50 AM

Re: Hope shattered!!! DEXA WORSE
 
Hi Podiecat so sorry to hear of your great disappointment in further bone loss. Tell us about your supplemnts. Were you taking strontium? How long ago did u have the last scan. I know it is difficult for you right now but we are all rooting for you here.. and with some different help you will improve
Don't get tooo discouraged but keep on trucking!!

starfish81 01-23-2008 11:56 AM

Re: Hope shattered!!! DEXA WORSE
 
Awwww Podiecat, that sucks! It's so unfair-you did all you could and now this. Don't know if this will make you feel any better, but my primary MD says to remember they're just numbers on a sheet of paper and they measure BMD, not bone strength.
You've got lots of supporters on these boards who are thinking of you.

osteoblast 01-23-2008 12:09 PM

Re: Hope shattered!!! DEXA WORSE
 
Podiecat-I am in a difficult situation with my bones as well. But, we have to try to persevere.:) I was recently told by a specialist "do not get hung up on T-scores"-what you need to look at is the gm/cm2 that is gram per centimeter squared which should also be on your report. Compare that over the two dexas .
And, now you may need to move on to another bone therapy. Have you gone through menopause and if so , how many years since your last period? Meno can just rip through our bones it seems. If you have not already done so , I would think you need to try to find a doctor who specializes in osteoporosis .
The psychological part is hard , it can be frightening. I have been dealing with the anxiety and fears of this diagnosis now for some time. Also I have proceeded with forteo a treatment that is supposed to be very powerful , that has shown no improvement in my case so far (15 months into a 24 month program).I just had a recent dexa and no improvement and a slight worsening in my spine. So, I do know how it feels to have hopes dashed as well. And, yet we have to choose how to go on from here.
So the best advise I could give you now is to get to the best specialist that you can -this may take some time because they usually have long wait lists and some aren't even taking new patients. Do all that you can do with diet and exercise. And, take care of your emotional and spiritual well being--maybe you will need to see a therapist to cope with the diagnosis of osteoporosis; maybe you will need to be involved in a stress reduction program( I am going to be doing this soon ); depending on how you feel, your support structure, religious beliefs, spiritual life , you should be able to figure out what is best for you. Maybe meditation, prayer, tai chi, -whatever works for you.

DesertBloom 01-23-2008 01:24 PM

Re: Hope shattered!!! DEXA WORSE
 
Hi Podiecat: I'm so sorry about your news... I'm curious about your regime as well; where you taking anything else besides the ezorb? Unfortunately exercise and calcium/bone vits aren't enough on their own. Calcium and exercise can maintain "some" bmd and possibly cause some gains, but I don't know that many who have increased their number that much on supplements alone.

I agree with Osteo, find a specialist and do as much reading as you can to find something that will work for you. I also don't think that our t-scores alone tell the whole story. It's too bad we don't have a test that measures strength, because if you haven't fractured you may be one of the ones who have good strong bone. Do you have a family history of osteo, and if you are through meno that will lower your score. TSH, chem panel, and cbc are the most frequently used tests to rule out secondary causes of osteoporosis, which are treatable. Also has your dr done any bone marker tests? Bone marker tests are easy to do, and can tell the Dr a lot about the level of bone turnover in your case. Was the dxa done on the same machine? The variability rate is about 3%, so if you didn't use the same machine you can figure that 3% of the score is attributable to errors. If you could tell us more about your history/age and treatment, that would help a lot.

Don't worry too much, even though that's easier said than done, try to find someone who can help you further. Have you been checked for any secondary causes of osteo? Lot's of people have other probs that make it worse, and if you can treat those probs you can greatly improve or solve your bone deficiency.

Good luck with future scores and remember they aren't the only thing that defines our bones.:angel::angel:

sierrawalker 01-23-2008 04:41 PM

Re: Hope shattered!!! DEXA WORSE
 
Podiecat,

You are not alone. I just found out my scores & can not believe the results! This was my first test & expected less than perfect but not this:

My back T-score is -4.5
Z-score is -3.4

Hips a bit better at -2.4 & -1.8

I have already had 2 fusions & am rather panicked at the thought of anything else happening. Mine is a long story of falling while bike racing 25 years ago, lots of surgeries, wheelchairs & rehab hospitals. Finally getting back to life the last two years, walking, working out at the gym & kayaking this past year. This test was for a baseline as am 54.

I will start Forteo tonight, change my supplements, exercising, and try everything I can do to change this. Thankfully I know now, I had even gone downhill skiing last winter. God is good to me, smiles.

I appreciate the other posts and need to find a good doctor also. Much to learn.

podiecat 01-23-2008 04:49 PM

Re: Hope shattered!!! DEXA WORSE
 
Hi all of you wonderful people,

I have so much I could share but I'm a basket-case right now. Osteoporosis does not run in my family. I'm 55 and am very screwed up endocrinologically plus I have systemic mastocytosis (which is a very rare disease that could cause osteo but mine has been pretty well controlled). What I don't have is a good doctor (I've switched four times in the last few years). I have posted on this list a few times about my story, blood work values, and about my discovery in the fall about being on too much thyroid for who knows how long. Because I will not go on biphosphonates, the doctors, especially specialists, will have nothing to do with me. The only great medical support I have is my naturopath/acupuncturist. The latest doctor is so flaky that she is worthless. I have been desperately trying to get help but believe it or not, Vermont seems very limited for those who don't blindly follow conventional medicine. I am absolutely alone, living alone in a too big, too needy, 200 year old farmhouse that I own and am stuck in. I've been severely depressed for three years and have no support at all. I'm not religious but have tried most everything else. This latest news has been validation of no hope. Somehow, I get it together to be on with my mom who has advanced alzheimer's(in a home) and for my six year old granddaughter. My beloved old dog (my only real friend) died last summer. I thought for sure that my scores would be no worse so I was waiting for them to tell me whether I should get another dog or not. I'm unemployed and can't find a job because I'm very hard of hearing. I feel like I'm only alive to pay bills..... Yes, OH WOAH IS ME....

Now that I've sobbed that out, I can tell you that I've done lots of research and reading the last few years. I'm on EZORB, ester-c, magnesium taurate, vitamin D3, fish oil, K2, osteoboron, zinc picolinate, folic acid, B-12, and more. I have not tried strontium yet, as my illness can cause severe reactions with many substances so I've been waiting till I have a doctor who is with-it and 'on' with me. Weight-bearing exercise is not as much as I should or want to because I have a morton's neuroma in my foot that is painful. I finally bit the bullet for orthotics that the podiatrist told me I should have, and after all of that money, they are not right.

Yes - I need a very smart doctor to figure out my endocrine issues, osteo issues, and all the rest. My therapist just shakes her head and says that she just doesn't know what to say because it is all very real and challenging...

podiecat 01-23-2008 05:08 PM

Re: Hope shattered!!! DEXA WORSE
 
Hi Sierrawalker and All,

Your post came in the moment before I submitted mine. I'm so very sorry at your results. Two years ago I felt as shocked at my baseline as you are now. And I'm shocked, so very scared and feel powerless at my latest dexa scores. One reason why Forteo is not an option for me is because of my disease and not having a good, very smart doctor to sort it all out. I also would have to face biphosphonates once the two years on forteo were up which would not be okay. My teeth are already having major issues.

Please keep posting and let us know how you are doing. I think you will do well....

*****

I just dug this up - a previous post of mine (before the thyroid overdosing was discovered and switching to EZORB):

Hi All, I have been following this forum for about a month and first want to say thanks for being there.

I had an osteo confirming DEXA about a year ago. I had a lumbar total T score of -3.1, left hip -2.4, and femoral neck of ward's triangle -3.0 and -3.5. I'm 54 and have a rare disease called systemic mastocytosis which can lead to secondary osteoporosis. I've had hypothyroid, diagnosed over fifteen years ago which has been stable on 150 mcg of generic synthroid, am post-menopausal or close to it, and very depressed. Every thing I try to do to get exercise leads to more joint issues.

I've been on Bone-up, magnesium, D3, K2, C, lots of fish oil, and many other supplements for a year now and I just got lab results back that show my bone is still breaking down too fast. I read The Myth of Osteoporosis a year ago and have refused to go on any of the so called magic bullets but I am seriously considering strontium. Because of my disease, I react to many substances that most people don't. Have any of you reacted in any way to strontium?

My latest labs were:
DPD 13.0 (ref. 3.3-13.5) high end of normal
NTX 108 (19-63)!!! Very High
24 hr Urine Calcium 282 (25-300) high end of normal
serum magnesium, zinc and calcium normal range
Bone alkaline phosphatase 23 (normal <22) High
Manganese 1.0 (0.40-0.85) High
Boron - Non detected !!!
prostaglandin D2 22 (35-115) Low *must be due to all of the fish oil!!!

Do any of you know why my manganese would be high? Could it be from taking too much magnesium?

I think my calcium is going to my joints instead of my bones. An MRI of my shoulder showed deposits. An x-ray of my knees showed osteopenia but nothing to cause the catching and pain.

Sorry to ramble on.... I have not had any fractures yet - knock, knock, knock - but I don't know how to get this under control. I had done extreme weight-bearing work and play up to a year ago. I don't even recognize myself anymore!

phylwill1152 01-23-2008 05:22 PM

Re: Hope shattered!!! DEXA WORSE
 
Hi Carol...you've had a heck of a day. Getting bad news is never easy especially when you've worked so hard to do the all the right things. I don't have a brother, but if hugs fly thru the air i'm sending you one now. Take care...phyllis

osteoblast 01-23-2008 05:45 PM

Re: Hope shattered!!! DEXA WORSE
 
Podiecat-Yes, it sounds hard for you. There is alot on your plate. I know exactly how you feel about the loss of your dearest pal, your dog. The reason I know how you feel, is that I lost my wonderfullest friend ,my dog , about a year ago when all my health stuff hit the fan. He is in my heart and always will be. His gift of loyalty and friendship was one of the deepest experiences of my life .The love that our dogs show us is truly a miracle.
I too said to myself and others "I am a basket case" just like you are saying now. Boy , the things I have said to myself . I recall saying this at the physical therapist, when I was in hand therapy and just couldn't even lift a cotton ball and asked the therapist if it was weighted. Well, it wasn't.She gave me a very kind , sweet look and just continued encouraging me. But, that didn't stop my negative self talk , it went on and on. Try to be aware of the things that you are saying to yourself and ask yourself if you would say such things to someone you love deeply. I would never say to anyone I loved deeply who was in a bad situation-" you are a basket case" or " you are damaged goods". But I said such things to myself and it became a mantra .This kind of thing can just pull us down.
You are definitely in a challenging situation. In the end all I can say is that the road is hard and I have known that road as well. And, there are so many others who travel the hard road- alot of the people on this board . For quite sometime I knew I should get some counselling or help in some way and just didn't move forward with it. I now am. The woman that I am working with was diagnosed with cancer a year ago, and it was a particularly aggresive type of breast cancer, she says she is surprised that she is still here and now doing ok. Well, just knowing her and having her speak frankly about her experience has helped me alot. She has confronted the abyss, up close and personal. So, I would say try to be kind to yourself now and perhaps you can find a therapist or support group that will see you through this. I am hoping the best for you.
p.s. don't give up hope now-it really is too early to do that!They are working on new drugs that are not bisphosphonates and two specialists that I have seen recently are very optimistic that soon there will be better options for us.

Mel52 01-23-2008 08:37 PM

Re: Hope shattered!!! DEXA WORSE
 
Carol I am sorry to read your scores are worse. I am afraid that will happen to me too. I still can't believe I even have osterporosis. I had such a bad reaction to Actonal I am using the Fortical. Not the doctor's first choice but the comment is something is better than nothing. I too am taking the calcium, D, magnesium. Amgen has a new drug in the pipeline that should be out in about two years. I am hoping it will be good

podiecat 01-24-2008 08:56 AM

Re: Hope shattered!!! DEXA WORSE
 
Thanks to all of you who have replied and cared,

I think the most challenging thing for me is that I have not been able to find the right doctor to help sort all of this out. I feel like I'm the only one up here in Vermont who needs a doctor that thinks out of the box. My few friends are lucky enough to never have to take a drug or seek medical care. It's all or nothing up here!!!

Do any of you know of incredible endocrinologists that have a more holistic belief? If I could find the right one, I would be willing to drive to the Berkshires, eastern New York State, or wherever.....

I just can't 'obey' a doctor who is arrogant, can't see the obvious and a puppet of the drug and insurance companies. If the endocrine issues are not sorted out, it's not only my bones that are compromised.....

Thanks again, Carol

*** Have any of you been on or read about the 'Eat Right For Your Type' diet (not necessarily to lose weight but for stubborn health issues)?

DesertBloom 01-24-2008 09:55 AM

Re: Hope shattered!!! DEXA WORSE
 
Hi Carol: Have you had chemo or radiation? I was wondering why you couldn't try Forteo, unless you have some pre-existing cancer situation. Is the mastocyst.. treated with chemo/radiation, sorry I don't know what that is? I've been on Forteo for 19 mos and have had fantastic results. I have no plans on using a bisphosphonate when I'm done, I want to use Evista, but we'll see what happens in July. I started out at -3.6 (spine) and now I'm -2.5

Manganese is not the same as magnesium, do you know why they tested you for that? I don't think I've ever had that checked, with all the tests I've had.

Here's a link on maganese from the cdc, maybe it will help in some way.

[url]http://www.atsdr.cdc.gov/tfacts151.html#bookmark02[/url]

It seems that with anyone who has osteoporosis, there are very few options for treatment, and you just have to pick one that makes the most sense to you. Since you don't want to do bisphosphonates, then that leaves, calcitonin (doesn't work well with low scores) Evista, Strontium Citrate, or Forteo. You could do just vitamins and exercise, but I wouldn't recommend that to prevent fractures.

Good Luck, sorry about your dog, we just lost our cat of 19 years, so I know how it is:(

I hope you find a good Dr, I have one I really like, but finding her was just happenstance...

podiecat 01-24-2008 10:37 AM

Re: Hope shattered!!! DEXA WORSE
 
Hi Desertbloom,

That is so great about your improvement!!! What is eviata?

Mastocytosis is a very rare disease that manifests by having way too many and too active mast cells. Mast cells are what cause allergic reactions and when triggered, they degranulate - releasing histamine, heparin, interleukin2 and more. There are many reasons why the systemic form can lead to osteoporosis - I think the heparin is one of the main ones. It also causes poor absorption of nutrients in the gut. The main masto meds are H1 and H2 blockers. H1 are atarax, zyrtec, claratin.... H2 are zantac, etc.

Low stomach acid (malabsorption) is a big reason why zantac could also add to osteoporosis problems. I'm on very little of both. So the big question is how do I gamble? Would it be better to not take zantac at all and risk the mast cell mediator release of heparin and more? - or take zantac and not have the acid needed for breakdown?

Masto specialists seem to only push the big gun drugs without looking at the big picture. They don't seem to know any other way. But I have to live (or not) with the consequences. I'm pursuing the 'Eat Right For Your Type' diet because it addresses the stomach acid issue and so much more.

I have not had chemo or radiation but masto can cause an awful variety of malignant cancers and issues. Anaphylactic shock is also possible with many substances that would not normally be an issue.

I need brilliant guidance!!! Yet, I can't even find an MD who knows that your right pinky is related to your right arm!!!!!!

I believe my mineral levels are not right because my endocrine system is not working right. The doctor lowered my thyroid dose .25 in the fall and within 48 hours, I was my old self physically and mentally for the first time since my first menopausal night drench three years ago. It was pretty good for about two months and then I gradually ended up back where I had been - not right at all. I need someone who will continue to monitor my levels and know how to interpret the results. And before I can try strontium, I need to know I'm absorbing calcium.

Thanks for the link about manganese - I will check it out now...

Thanks so much for your caring and support...... Carol

DesertBloom 01-24-2008 02:07 PM

Re: Hope shattered!!! DEXA WORSE
 
Hi Carol: Sorry that you have so much to deal with. Does your Dr know a lot about the mastocystosis? I tried to look it up, but your right there isn't much on it.

Sorry I mispelled Evista, but it is a SERM (Selective Estrogen Receptor Modulator). I'm not taking it, so maybe someone who is can explain it better. It's used for osteoporosis, because it mimics the affect of estrogen on some tissues and blocks estrogen affects on other tissues. It would be easier to understand if you looked it up.

If you could find a Endo that has a DO degree, they "might" be more responsive to a holistic approach. It's tough to find a Dr that doesn't prescribe drugs, because that's what they are taught. Now a Nutropath, or Nutritionist would be someone that studied that in med school, where traditional Drs don't. Are you completely convinced that there is a holistic approach that would work for you, and if so have you found a paticular one that you read about that you would like to try? If you can go to a Dr armed with research that proves your theory you stand a better chance in getting them to go along with your ideas. I have a sister in law that has advanced cancer of her liver, and she has now decided to give up on all conventional medicine. She seems happy in her decision, and the approach she is using would be quite difficult to do I would think since it involves only eating organic fruits and vegetables that have to be juiced many times a day, coffee enemas etc, but I think we all feel that she is dying, and have to let her do what she wants-and that makes her feel better. Some of the family is having trouble with her choice, but I feel she has to do what is right for her, and hopefully it will help, but she doesn't look good. It's a sad situation and "different" from yours, but it's an example of the times we have to decide whether we want to continue with conventional med or not.

Good Luck in your search for a Dr and a resolution to your medical problems.:angel:


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