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Horror Story with a DEXA bone density test

nathji
0 Recommendations

I have a reason for being scared of DEXA tests. In 2007 when I had my first DEXA scan done -- the first machine showed dreadful scores of T = -3.7 and T = - 4.2.

I was then told by the doctor that I must start Forteo injections daily--which were prohibitively expensive, if I wanted to save myself!!

I got so scared that I was even afraid to sit down and get up from chairs lest I have a spontaneous fracture!! I walked in a weird Charlie Chaplin sort of way in the house to avoid hitting the feet against each other or against furniture, lest I break a bone because they were practically shown to be hollow by the DEXA test!!

Then a sixth sense told me that I might try another DEXA machine in a larger clinic. I did that and the second machine showed mere T= -1.9 osteopenia!!

Probably the first machine had not been maintained well and was giving wrong results. Or maybe the positioning of the body under the machine was wrong.

In one DEXA machine they put a box beneath your knees while you lay down, whereas in the other they just asked you to lie straight without raising the knees!

I wonder how many persons have had this horrifying experience with DEXA machines doling out wrong results. Every time I hear the doctor say in a non-commital way "Only a DEXA scan will show!" I wonder which machine he is talking about!!

This is regardless of how much Calicum and Vit D we take!!

I wished to share this story so that people who get bizarre results with DEXA machines should get them double-checked!! It can be quite expensive getting repeat DEXA scans done in India, so many people just sit quietly with the results of the first machine, and suffer wrong medication for years.
I wished to share this story with others so that they may not get too despondent of the DEXA results are bad-- they might try a second machine!!

I recall the time a Lab Test had shown Urea of 300 for a friend of mine! And it was a surprise he wasnt in kidney failure. He was in state of great panic and misery until he got a repeat test which showed that the Urea was around 30. The typist in the first lab and wrongly typed an extra 0 in the first report, making 300 out of 30!!

When doctors say "Only a lab report will show", I tell myself "Ha!"

I wonder if others have had similar experiences..

The maxim is : If the lab results are bad, don't be sad but go to another lab.

Yours,
Priya

Yours,

Explore topics in this discussion:

Cancer Surgery Falls Dementia Hypotension Osteopenia Influenza Osteoporosis Evista Dehydration Boniva Confusion Forteo Fractures Fever Fosamax Actonel Weakness Pain

26 replies

Char42

Here in the States Dexa machine differ with results, I am not concerned about my bad results. Actually stayed the same as the one 2 years ago, both different Dexa machines. Other recent diagnostics show Osteopenia, Dexa shows Osteoporosis; I have never had a fracture. In the last 10 years I have done plenty of dumb stuff and no fractures. LOL

gardengal

My bone health is managed by my endocrinologist who is firm that you must be tested on the same machine every time to find relative changes. The differences on the machines is attributable to the control group used to determine the norms. Each manufacturer uses its own control group, so standards of 'normal' will differ by manufacturer.

nathji

Hi,

Char42 and Gardengal,

I must thank you for your kind replies. I can well understand the differences in the norms of the various machines.

But I suspect that the difference between two machines when one gives a T Score of -4-2 and the other a T score of -1-9, so widely and wildly off the mark from each other can only mean that one of the machines has gone "haywire"-- the question is which one!

Incidentally the doctor where the large T score of -4.2 came, was all too eager to call the Forteo representative, who, in turn, popped up like a genie of Alladin's lamp just then -- and was all too eager to sell his wares!

He told me of the marvels of the drug and how it was their motive and raison d'etre just to help people. When I told him I could not afford the Forteo injections, his desire to help suddenly vanished along with him!

I began taking Actonel tablets weekly instead, in conformity with the T = -1.9 osteopenia result. I am symptomless since the two years of this incident.

My sister had also gone to the same doctor for knee pain, and he all but took her knee measurements for knee replacement surgery! Subsequently another doctor simply prescribed hot pads and knee exercises and she hasn't had any problems since then.

It is bad enough patients struggling with their symptoms and diseases without having doctors and machines muddle up the issues! Or maybe it only happens where I am!

I do hope no one else has had to undergo this medical confusion, which is a disease in itself!

Thanking you again for your kind attention.

Yours,
Priya

linnyd531

hi nathji, thanks for sharing your experience with the 2 different dexa machines. did you have to pay for the 2nd dexa test? i think insurance covers dexa once every 2 years. It does make you wonder about the recent rise in osteopenia/osteoporosis in this country. Can some of it be attributable to crooked practitioners in cahoots with drug companies.

PikaB

A cheaper way to verify a DEXA test result is to have an ultrasound heel scan. The results needn't be identical, but the scores should be in the same vicinity if both machines are accurate.

nathji

Dear Lindy,

Thanks for your understanding reply. You hit the nail on the head -- that was precisely what I was hinting at! It is common practice to see some medical practitioners working in cahoots with drug companies. There is no health insurance here that pays for medical tests in the way you have in the US. Yes, I had to pay for both the Dexa scans and apart from the money spent, an eternity of time was spent on just worrying.

Even now many times I wonder which of the two machines was correct-- 2 years afterwards! But I assume that the Forteo one was wrong because of the mysterious appearance of the Forteo salesman at the tip of the doctor's hat!

I only hope and pray that others dont have to undergo this harrowing experience, because you have so many good and dedicated physicians as well, who make life easier for us!

Yours,
Priya

nathji

Dear Pika B,

Thank you so much for telling me about the ultra sound heel scan. I believe they have something like that in some clinics here where they take an ultra sound of the hand. I believe you are right, there ought to be some similarities in the results. I will certainly try it out whenever I can find such clinic.

Thank you again for your helpfulness.
Yours with regards,
Priya

Char42

Hey Nathji
"common practice to see some medical practitioners working in cahoots with drug companies". That has been an issue in the States and I have seen adverse newspaper articles about that subject. Some Doctors like the free meds from the drug reps for their patients that cannot afford medications. I changed clinics, as I had to wait behind drug reps as long as 2 hours past my appointment. Wish I had been invited to the pizza parties, as I have witnessed pizza brought into the Doctors office. Another insult, I had to sit and smell it while hungrily waiting for my appointment. In 2006/2007 I did get some free Bisphosphonates.

nathji

Dear Char42,

Thank you for your illuminating reply. I thought this business between doctors and medical representatives was peculiar only to where I live. But it appears people have similar tendencies in all parts of the world. I am glad you got the free biophosphonates eventually-- and the only question to remain would be whether these were at all necessary in the first place!

The med representative in my case, who professed to "healing humanity" disappeared as soon as I told him I could not afford the Forteo! They didnt have pizza parties here -- only tea and cake!! But I doubt whether the tea and cake materialised because the Forteo deal did not go through-- which would have brought them the equivalent of $ 10,000!

Yours,
Priya

huessysignoret

Actually, Priya, mistakes are made in labs all the time, not just with DEXA machines. I was recently turned away from an emergency room with a diagnosis of "nothing wrong." Actually, I had a severe intestinal blockage which required emergency surgery a few hours later. I was also diagnosed with "dementia," when the problem was a drug that was sending me into renal failure. Another time, my husband took me to an urgent care facility because I was almost incoherent and extremely weak. They did some tests but sent me on to a doctor with whom I'd already made an appointment. She correctly diagnosed an intestinal illness that is potentially lethal, and I was hospitalized for a week. When I walked back into my house, I got a call from the urgent care center cheerfully informing me that all my tests were negative and I was just fine. I could go on and on, but I suspect anyone who's had medical problems has horror stories to tell. That's why it's so important to ask questions, do your own research, and take control of your own health care. But, I know, I'm preaching to the choir.

nathji

Dear huessysignoret,

Thank you for telling me of the numerous wrong diagnoses made in your case, which could have been fatal. As compared to yours , my Dexa scan pales into insignificance.

I dont know whether medical science is imperfect or whether doctors dont study their books as well as they should, or whether they are simply callous.

However we are alive today because of those good doctors who save us in the nick of time, when the incompetent ones fail.

I wish you the best of luck for the future and hope you get the best doctors and labs this time! Or better still not need them at all!

Thank you for replying and also for sharing your invaluable experiences.

Yours,
Priya

Jacqueline

Since we're discussing horror stories about doctors and hospitals, I'll share one. My mother was in the hospital and on a feeding tube. She had been on the tube for five days, during which time her doctor did not come to see her. I complained to a nurse, who assured me the doctor had never requested she be taken off the tube.

I decided to phone the doctor. Hold on to your hat.
Her doctor was vacationing in Florida. When I reached him on the phone, he gasped, "Oh my God,
I forgot about her!"

nathji

Dear Jacqueline,

It was indeed sad to hear your experience regarding your dear mother. I hope she was well after that. Leave it to such doctors to enjoy themselves in Florida.

Mine is much more tragic. My father had fever, due to which he could not swallow food or fluids. However he could still talk with an effort. The doctor who came to see him, said: "He is still conscious! You dont need to feed him intravenously. Here, let me show you how you can give him fluids." Saying this, he gave him water to drink, literally forcing it down his throat, while my father choked and gasped.

The doctor said, "There! Didnt I tell you he could still swallow fluids!"

It was Saturday night. After the doctor had come and gone, my father began to gasp for breath. His breathing rate went up frantically.

When I called the doctor on the phone, he was at a party, and he was obviously inebriated. He was annoyed, but he came over. And that was my greatest mistake.

His pride was injured when I told him the water may have gone into my father's lungs.

"Who says so? " he said, and then he forced him to drink another glass of water when he was barely conscious. "See? It has to be done properly!" he said before leaving.

My father died a few hours later, choking and gasping. Later the diagnosis was that he had been literally drowned by the forced water intake into his lungs. If he had been fed intravenously he would have survived the fever which was just influenza.

I have never forgiven myself since that time for calling the doctor--who was a professor in a reputed institute.

I can well understand the state of your mind and that of others who have suffered similarly at the hands of callous doctors.

I feel it is the "sense of power over life and death" that such doctors feel, which gives them the arrogance to treat patients as they will - not to mention their convenient 'forgetfulness' as in your dear mother's case.

Thank you so much for sharing the story.

Yours,
Priya

rtsmiles

I was interested in your comment,Nathji,concerning your leg weakness. I notice pain sometimes in my shins since my diagnosis and various fractures in ankle and metatarsals. No one has said that the pain could be an effect of the osteoporosis. I used to be able to walk for hours. Also, my front teeth hurt. Anyone have the same feeling. They are also a bit moveable. Dentist says grinding of the teeth , perhaps, while I sleep. I never realized that I am doing this ?? thanks for any responses.

Jacqueline

Dear Nathli -

I'm so sorry to hear your frightening story. Is it too late to try to sue the doctor?

nathji

Dear Jacqueline,

Thank you for being a friend. My story was similar to yours, but much more tragic. No, I didn't sue the doctor, firstly because I was in a state of shock because of the suddenness of all that happened, and secondly because I blamed myself most of all for calling the doctor a second time, even when I could tell from his voice on the phone that he was drunk at his party. It was just the state of our absolute dependency on doctors that led to such a pass.

The episode relates to 1992. Years later the man died a horrible death from cancer of the esophagus, in which he could not swallow food or water. I spoke to him on the phone and forgave him. But it speaks for the fact that God's justice is still there beyond the courts of men. I am deeply touched by your concern and your friendship.
Yours,
Priya

nathji

Dear rtsmiles,

Thanks for writing and letting me know of a similar problem in the legs in your case as in mine. Your fractures were frightening as also the fact that you can't walk for hours. I didnt have any fractures but I simply cant walk for long without getting fatigued in the legs.

Yes, my front teeth do appear to be somewhat loose, but there is no pain.Are you taking biophosphonate-- actonel or boniva or fosamax?

These drugs are known to give some trouble with the jaw bones, though they say it is very very rare. I do hope you have nothing like that. But if it is beginning, it may be time to stop the biophosphonates after consulting your doctor.

I believe this is the most alarming side effect of the biophosphonates-- but the loose and painful teeth may be due to other reasons also like gingevitis.

It may require a combination of your doctor and dentist to get at the root of the problem. I am relieved when you write that no one has associated the leg fatigue and aches to osteoposoris. Thank you for sharing.

Yours,
Priya

rtsmiles

Hello Priya,
WOW! Just amazed that this discussion thing really works! This is the first time I have ever joined any Internet group and really am looking forward to future notices and stories from osteoporosis people.
I had only been on Fosamax for 11 weeks, took myself off of it , and started Forteo 2 months ago. Seem to not have any problems with the Forteo except as noted previously I have so far unexplained cloudy urine (as noted in my first writing TO THIS site). No, I do believe the pain was even before the Fosamax. I honestly can't remember. Thanks again for writing back.

nathji

Dear rtsmiles,

So glad I was of some help. Since the pain was even before the Fosamax, that is a reason for great relief, and it cant be the jaw bone problem associated with Fosamax, thankfully. Best of luck with the Forteo, about which I have little knowledge except that it is very expensive and very effective. But there are very knowledgeable people on this site and I am sure they will know more about it.

Best wishes for now and thanks,
Yours,
Priya

edie26

nathji and rtsmiles,

I noticed the mention of leg fatigue (from nathji) and shin pain (from rtsmiles). I have been experiencing severe leg weakness for over a year in which I become extemely sick and nauseated if I don't stop and rest. I also started experiencing shin pain about six weeks ago if I stand longer than a few minutes. I have osteoposis (-5.3 spine, -3.8 hip) and have taken various meds (evista, fosamax, forteo) over the last 6 or 7 years. The leg weakness and sickness are keeping me from working (first grade teacher), and I really want to return to work. None of my doctors have been able to figure out anything to fix it yet. I have not heard anyone else mention this problem until I read your posts. Best wishes to you both!

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