Just established my profile and want to say hello to all. I will be reading through posts to learn more of what each of you have experienced.
I am most interested in managing this condition without meds due to the side effects with the jaw.
Update 6/26/2022 full story:
I was told by prior Gyno’s stand in doctor about 3 years ago to have a DEXA since I had onset early menopause between 38-42 years old. I did this only to receive a notification in the mail and a phone call telling me I had osteopenia and to be tested again in a few years. No other information was provided to me at all and certainly nothing to raise any alarms that a course of action needed to be taken. While I feel so incredibly stupid about it today, I did nothing.
I am 54 approaching 55 in September. I have had big dogs since age of 30 and walk with them several miles a day. I eat, for the most part healthy but do like my junk. I float in weight at about 129 to 135 lbs. I do smoke about ½ pk a day or less. I drink on occasion.
My annual visit to my doctor (Kaiser Permanente in MD – great outfit) he had all sorts of blood panels done and prescribed a DEXA. I was told a few weeks ago I had my foot in the door by 1 point of being pre-diabetic. I immediately spoke to a Kaiser Nutritionist and began what they call the plate method. There was not much about my diet to change, rather just rearrange. For instance, what to eat with what and when. When I eat my junk just do it when I have had a protein. Easy and do not find this difficult. I am glad I did this as it already has me prepped for the diet for Osteoporosis.
I learned of my results last Thursday, just three days ago. I went on a marathon of research. Hearing all sides, theories, and treatments. Watched an hour lecture from 2016 by University of Ca. on YouTube that was very insightful and very upfront about not supporting supplements. But still provided me with enough knowledge to arm myself.
I will summarize:
Bone Density:
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Region BMD T-score Z-score
Classification
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AP Spine (L1-L4) 0.826 -2.0 -1.0 Osteopenia
Femoral Neck (Left) 0.568 -2.5 -1.5 Osteoporosis
Total Hip (Left) 0.708 -1.9 -1.3 Osteopenia
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World Health Organization criteria for BMD impression
classify patients as:
Normal (T-score at or above -1.0),
Osteopenia (T-score between -1.0 and -2.5), or
Osteoporosis (T-score at or below -2.5).
10-year Fracture Risk:
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FRAX not reported because:
Some T-score for Spine Total or Hip Total or Femoral Neck at
or below -2.5
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I learned the following so far:
1.Proper diet. The whys and hows. Already incorporating as stated above already worked with a nutritionist.
2.Supplementation. How calcium works but is not necessarily the fix and can be dangerous. It is not a calcium issue so much as it is a calcium absorption issue alongside of minerals and so forth. I already began a supplement by Life Extension called Bone Restore with Vitamin K2. If you review the ingredients, and find it is the perfect cocktail of supplementation needed for this alongside diet and exercise. Doctor prescribed 1200 mg daily of calcium and 800 units of VD. This supplement is lower on calcium which works for me as the remaining I did calculate and get through my food. He also prescribed Alendronate 70mg once a week and scheduled a phone apt. to discuss with me on 7/8.
3.Exercise. This I am overwhelmed with what I hear. Jump don’t jump. Bend this way, don’t bend this way. Very conflicting. For instance, one site shows not to bend forward, or twist spine then shows you exercises to do where they do just that. I hear of foot fractures etc. This part I am asking doctor to set me up with a physical therapist so I can learn what is right for me and learn the right way for me. I am hoping he will prescribe at least 4 initial apts and maybe a quarterly follow-up.
4.Medication. Wow. The WORST part of all of this was learning about the medication. The JAW death issue, while 1 in 100,000.. it is an issue for me because my gut screams that I will be that number 1 spoken about. I have the mouth of a 55-year-old for sure. I have gum recession, caps, filings… possible root canal in future. There is a cartoon out there showing a woman in bed saying to the doctor she’d rather have the original disease than suffer the side effects of the treatment. Well, in this case that is me. I don’t want my teeth to fall out, gum loss, jawbone showing in my mouth, constant infection, and disfigurement. These drugs also stop bone turnover and preserve existing bone which causes jaw death. I cannot say I will be able to avoid them forever, but right now I am not taking them.
My course of action (my plan)
1.Learn more and further improve diet and exercise for this disease. Put aggressive plan into action.
2.Supplementation.
3.Quit smoking.
4.Rescan in a year.
5.I have upcoming apts with Gyno, Eye Dr, Dermo, and Dentist. I will discuss with each of them.
6.Get my mouth in tip top shape incase I just cannot avoid the meds. I am going to begin graphing in the fall months on two areas of my mouth with most gum recession. Inquire if dentist sees any future dental concerns and address them. TAKE coq10 for mouth via oral and spray regardless of what dentist tells me.
I am not someone who cries or spends too much time feeling sorry for myself. But this got me good as it seems to everyone. Takes my breathe away, causes panic and much distress. I am not one to cry and somehow can’t stop from crying throughout the day. Wake up from sleep in utter panic and have to talk myself through it.
I am not going to feel guilty for feeling sorry for myself right now. I always have because someone out there has it much worse and I am indeed lucky. While that may be true, it does not take away any of the devastation I feel.
*** The lecturer on video from UofCa stated she prescribes meds to her patients if they have already experienced fractures, have bad gait and at risk for fall, have very low bone density and are very thin and looks at family history.
I was not given my Frax score as you can see above. No idea why. I did my own on american bone health website which has me in yellow close to red nearing needing meds. When I put I do not smoke currently it put me in green. So I will quit smoking (tomorrow, lol) and follow that Frax scoring.
Dexa results
Even if you increase your bone density, you still have osteoporosis
Newly diagnosed and feeling overwhelmed
osteoporosis or osteoarthritis 
newly diagnosed and anxious
