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New - Don't Know If I should be concerned

redshoes
0 Recommendations

Hi everyone!

I am so glad to have found this site! I am a 41 year old premenopausal woman. 3 years ago I had my bone density checked as a precaution (I had been on high doses of steroids for about 7 years at that point but have not had to take steroids in the past 3 years). At that time I was told I had osteopenia, but told not to worry about it, as I was no longer taking the steroids, so my bone density would improve back to the normal range for my age. I went about my life and thought nothing further of it. As part of my physical this year, my family doctor decided to check my bone density. I received the results today, and am not sure what to make of them. My T-score is -3.2 on my "Troch" (no idea what that is) and overall (Neck + Wards + Troch) my T-score is -2.2. My Z-score is -2.1. There has been a 7% decline in my T-score since my baseline 3 years ago (done on the same machine). I don't drink (honest), don't smoke, run 5km every morning (honest), don't drink soda or coffee, and am a vegan to boot (lots of veggies and fruit). Aka the poster child for healthy living! My doctor is sending me to a specialist since there seems to be no obvious reason for this happening. (The only thing I can think of is that I am thin, with a BMI of 18?)

Should I be concerned or can I just continue to ignore this? Are there any specific questions that I should be asking the specialist?

Thanks so much!

PS If this is what I get for healthy living maybe I should throw in a few unhealthy things :-)

Explore topics in this discussion:

Exercise Celiac disease Allergies Fractures Fosamax Reclast Osteopenia Osteoporosis Stress

14 replies

VictoriaLynn

WHen you are at the Doctor ask to be checked for Celiac Disease, and Vit D levels. Both figure in early osteoporosis. Thin women tend to have osteoporosis more often... But check out all the reasons it might be happening to you and don't panic... you sound like you are doing everything right.
good luck

nornd

Hello redshoes. I too was shocked ten years ago when diagnosed, for I too was into excercise, no meat eating etc. BUT I have a small thin frame, and also the hereditary aspect. I have since realised that stress has played a big part in my developing osteoporosis. As victorialynn said, Vitamin D levels are very important. Also check out your pH levels for the acid/alkaline balance. Also very important. Good luck.

karen698

I agree with Victoria, I can understand your frustration. Been there and done that. Like you, I never smoked or drank. Have always been active and have a pretty healthy life style.

I have always been thin-----96 lbs. when I married. And like you I have been on steriods. My DEXA scores have improved from moderately severe osteo in '96 to osteopenia at present. But even with the improvement, I still fell and broke my femur!

Have you fractured any bones?

I found out I was deficient in Vitamin D . I tested negative for celiac (blood test), but I'm not convinced. I have tried to gain weight all my life.

I will be taking my second Reclast infusion in a couple of weeks and I have had no fractures since '04. I pray that the Reclast is making a difference.

One thing I have learned sinced I joined this site is that everybody is different.

Blues

Redshoes, if you click on the orange box (NOF) it will take you to NOF's website. There you can click on About Osteoporosis and you will see a list, click on Bone Density Testing and you will get another list, click on Understanding Test Results and this might help you understand your results. NOF's website contains a lot of good info plus you can order some brochures and pamphlets from them.

I don't know what Troch is either. Do not ignore your test results but don't panic either. The specialist may or may not run additional test and may or may not prescribe meds. Exercise is good for all our ailments.

Let us know what the specialist says. Hope the NOF helps you understand your scores but be sure to ask the specialist to explain them to you.

redshoes

Hi everyone - thanks so much for your responses!

It sounds like I should wait and see what the specialist says. I will be seeing the same one who, 3 years ago, told me not to worry, everything would right itself on its own. I bet he'll be surprised to see me back. I probably won't get in with him until October though, things take a long time around here.

As to whether or not I have had fractures, I broke my toe about 4 years ago by stubbing it on a door (and not very hard either) but I am not sure that counts as a "fracture" since it is a pretty common injury. Other than that I have never broken a bone, not even as a child.

Interestingly I am on a gluten free diet and have been for years, as I have severe food allergies and gluten seems to make them worse. So even if I have celiac disease (never tested for it) I am doing a celiac diet very carefully because if I don't I feel rotten! Hopefully that will help my cause.

I checked the NOH site, and have also done some more research on "Z" scores. If I understand it correctly it sounds like there might be some secondary cause in which case sorting that out would cause my scores to improve. I also found a survey by the WHO about fracture risk (the internet is a great thing - how did we survive without it?) and filled in the questions. Not sure if I did it correctly, but it said my risk was "high". I guess time will tell.

In the meantime I have started taking calcium and vitamin D every day....hopefully that will improve my numbers too. I will ask about getting tested for it also.

I will have to do some research to figure out how to check my pH level, I know that an alkaline diet in general is a better thing, so once I get the pH level number I will do some research into osteoporosis/ osteopenia and diet.

One thing I found interesting was hearing that stress can impact (cause?) it - I definitely have LOTS of stress...have had it my entire adult life. I guess worrying about this doesn't help! :-) I do however take it very seriously as my friend's mother has osteoporosis, and due to several fractures had to be put into a nursing home in her early 60's. I definitely don't want to have that happen...she does not have a good life.

Thanks again everyone, I will update you once I have seen the specialist!

Redshoes

SaraMeeks

Dear redshoes:
Concern is a good thing and, as we age, as you will see, certain things happen and we should be concerned and seek advice and help so that we can live healthy lives. Fear, however, is not such a good thing as it can paralyze us into inaction.
As others have said, seek out information and plot your course. There are many secondary causes and conditions associated with osteoporosis and, by dealing with them, such as low Vit D, you also can deal with your osteoporosis.
The Troch is the greater trochanter of the femur--the bump you feel on the side of your leg at hip level. It is usually the strongest part of the hip area because of muscle attachments there.
Being thin or under-weight doesn't mean you have to have a diagnosis of osteoporosis. However, you will have less bone mass than a larger person. It is the quality of the bone that appears to matter even more than quantity and that comes from a healthy lifestyle (hopefully.)

millie123

Redshoes: You're getting great advice here. The only thing I would add is to ask your doc to run a full blood panel to determine if all of your endocrine functions are working correctly. Even a slight benign cyst on the parathyroid or pituatary can cause all kinds of problems. And if you have one of those, you must have it corrected or absolutely nothing you do will work.

duzy

I am your age 41, you are not alone.
Hi nornd, so my case sounds like yours what your doctor did? They ruled out hyperparathyrodisim, celiac/EGD, not enough calcium supplement.
Mine find borderlin low vit D like 28 treated me with vit D 50 000, exercise, calcium, repeated dexa showed rapid 5 % bone loss in 1 years, so after just added fosamax and plan to treat for 2 years and see dexa after.
I read medical report and I do not know enough since genetic disease is not well understood should I bother and go to JHH, Mayo or Cleveland for second opinion?
What else they can check, other than put one in some research study... any thoughts?

duzy

Hi Redshoes,
yes, please be concern in sense you need to find reason for problem , do not assume problem is just secondary to steroids, ask doctor to check 25 OH vitamin D, calcium in urine, calcium in serum, labs for gluten intolerance to rule out celiac disease, if any abnormal request referal to endocrinologist.
You see if it is secondary steroids, it is great and easy to treat, but if you have any other reason and just treat without checking at the time of initial diagnosis, it would be very unclear later to check like few years from now. It is important to do proper diagnosis for most effective treatment, good luck and I have my fear and I understand how fearful you feel, Eva

nornd

Duzy, my doctor did nothing much apart from prescribe Fosomax, calcium and that's about all. I had minimal improvement over six years. It has only been lately that I have 'woken up' and closely investigated the issue for myself. I dropped Fosomax at the start of this year, upped my intake of Vit D3, added Vit k1 and k2, and strontium, and I have also been monitoring my pH levels, sticking to as bone-friendly a diet as I can afford, and cutting stress from my life where possible. It's all I can do. Is there anything else?? I plan tyo have a DEXA at the end of the year, so I sincerely hope there is a change for the better. Certainly my body feels stronger in many ways than it has for awhile. Good luck, keep in touch, nornd.

parkers

Redshoes,
Don't ignore this. I too was shocked to learn I had Ostepororsis after eating healthy, drink milk all my life, no drinking, no smoking, etc. My mother found out late in life she had it severely after several broken bones. Well, I inherited the tendency and found out at age 61. I lost 12% bone density on high calcium with D and Fosamax for 6 years.

I became proactive and found an endocrnologist with specialty in Osteo. With simple tests her diagnosis of me - severely deficient in vitamin D. The treatment is inexpensive and easy. Since I have been on vit. D3 supplement I have be gaining bone density. Every person is different but I would suggest you request a blood test for vitamin D. The score range is 0 -100. Less than 40 is deficient. The goal is 50 and above. Look at www.vitamindcouncil.org for more research on vitamin D and the latest information. You will be hearing more about vitamin D. People living in the northern US in the winter do not get enough naturally from the sun.

Other family members have it also, we all are on vit. D3 supplement. It has helped our health in other ways, no more frequent muscle spasms. My blood pressure has gone down, bteter hair and nails.

You need to get your body chemistry in balance. good luck as you pursue the treatment that works for you.
Parkers

redshoes

Thank you so much for your reply!!!! Funnily enough, I just received my Vit D test results back and they are 48, with the reference range indicated as 75-250. I am now taking 2000IUs of Vit D per day - how much are you taking?

Thanks again - I am seeing the endocrinologist on Wednesday and will print off your response to show to him!

SantaFe

redshoes,

Your labs in Canada use a different measurement than here in the US----we use the ng/ml lab measurement, so you may be confused when you read/study about vitamin D levels and they show ng/ml ranges.

What isn't confusing though is that your D levels are REALLY low, and you will probably need much more than 2,000 a day to raise them. Parkers gave you the link to the vitamin D council above and they have great info. Most people need at least 5,000 a day when they are as low as your levels. This has been confirmed for me by my doctor who has been raising people's D levels for years and many other health blogs will confirm that. So if your doctor gives you a hard time about increasing vitamin D intake to a higher amount, just do your own homework---there's lot's of quality studies out there to help you.
Good luck,
Santa Fe

redshoes

Thanks SantaFe and thanks again Parkers (for the link - forgot to mention that), clearly I have a lot to learn on this topic! I have been printing all of this information so I can show it to the endocrinologist tomorrow. I will post an update as to what he suggests. It would be great if it was as simple as a Vit D issue!

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