Decisions

[Kitchenbuddy]

Hello, I am new here; however not to osteoporosis. My dexa scan a year ago diagnosed my T score at a -3.5. I was really scared but still opted out of taking prolio injection due to scary side effects. I also have digestive issues and trouble swallowing getting my throated stretched 2 times a year. I want to improve my bone strength naturally if possible. Just had shoulder surgery due to a bone spur and the surgeon says my bone there looks strong and no deterioration. Hoping for some encouragement.

[Met00]

I can fully understand your reticence about taking Prolia. You say you had a t-score of -3.5, but you should have had more than one t-score, so I would want to check out what the other one was, and also what your fracture risk is - something they should have estimated with FRAX or a similar tool, as t-scores alone cannot determine your risk. I wonder why your were recommended Prolia, as it is only meant to be prescribed for "women after menopause who are at high risk for fracture or cannot use another osteoporosis medicine or other osteoporosis medicines did not work well" (from the Prolia website). Have you tried any other medication? If not, there are bisphosphonate injections and infusions that also bypass the digestive system. If you did take Prolia, you would need to go on a bisphosphonate if/when you stopped it, to minimise the risk of rebound fractures, so you would first need to know whether a bisphosphonate would suit you. Your doctor should also have run tests to check for underlying causes of your osteoporosis, such as hyperparathyroidism, thyroid problems, digestive issues such as coeliac disease.

There's a lot you can do to help your bone health, without taking medication. First and foremost is weight-bearing exercise, as high impact as is safe for you (which will depend to some extent on whether you've had a fracture or are at high risk of one). Things like jogging, hopping, skipping, jumping, dancing, using weights and resistance bands. It's also important to have a healthy diet and make sure your blood Vitamin D level is good. Many of us take a variety of supplements, especially Vitamin D, Vit K2-MK7 or K2-MK4, magnesium if you're able to tolerate it, and maybe also boron and Vitamin C. Calcium ideally should be from diet, just supplementing to make up any shortfall.

[Kitchenbuddy in reply to Met00]

Thank you. I completed the frax assessment after Mark sent me the link. My risk factor is 25% total and12% at the hip I am taking the viactiv calcium chews with vitamin D amd k I have swallowing issues and have surgery every 6 months to correct. My digestive specialists just wants me to get my nutrients through food. I have severe const problems with slow motility so that is why I don't want to take medicine. I also am very active. I walk several times a day with my dog and exercise. I just want to be proactive and stop the deterioration in my spine. Currently having a lot of inflammation in my hips and seeing a chiropractor using acupuncture to adjust my spine. Hoping to see what has worked for others. Thank you.

[Met00 in reply to Kitchenbuddy]

I think the Vitamin K in the Viactiv chews will be K1 not K2, as it doesn't specify. It's K2 you need. They also don't give a lot of Vitamin D - 500iu is a basic dose, but many of us need more than this (I take 2500iu). The only way to know is by blood tests to check your blood D level. I can fully understand you not wanting to take meds. I've had a couple of DEXA scans, and at my last one was told my spine was -3.6, my hip -2.5, so quite a big difference in scores. I had a REMS scan (uses ultrasound instead of x-ray and is more reliable than DEXA) 14 months later, which showed both hip and spine scores were -2.6. That of course meant that my FRAX scores dropped significantly and confirmed that medication wasn't necessary. I'm guessing, as you mention your spine, that -3.5 is your spine score. Do you know your hip score?

[Mark_ABH]

Hi Kitchenbuddy, thank you for sharing your story with the forum. Did you get a FRAX report with your DXA scan? It's a risk assessment that takes into account factors such as lifestyle, age, sexy, medical conditions you have, medicines you are taking, etc. It is usually included on your DXA report. American Bone Health has a similar tool you can use (it's designed for people in the U.S., so results might not be accurate if you are in another country). It only takes a few minutes. It gives a more complete picture of your fracture risk, of which your T-score is one part. americanbonehealth.org/calc...

[Kitchenbuddy in reply to Mark_ABH]

Thank you. I don't think I did a risk assessment. I will look at this.

[benn123 in reply to Mark_ABH]

Hi All,

I did the frax test and I'm very curious why they only use the T-score from the neck. My spine T-score is much lower (-3.2) then my neck (-0.3). I would think they would use the lower score. Does anyone know?

[HeronNS in reply to benn123]

Are you sure it's not the femoral neck, which is part of the hip? And the usual t-score they rely on most.

[HeronNS in reply to HeronNS]

Or have I misunderstood you? Spine t-score tends to be lower and I suppose the hip is very important. A hip fracture can actually mean a person is more likely to die within the next year or two. The spine causes major quality of life issues but perhaps it doesn't contribute so much to mortality?

[benn123 in reply to HeronNS]

Hi,

It is the femoral neck! I'm so new and confused at all this I did not even know that meant hip....why do they use that one instead of the lowest reading wherever else it might be, in my case the spine?

[HeronNS in reply to benn123]

I'm not sure but it may be that readings for a large bone are more accurate than for smaller ones. You must also remember that bone density is not the same as bone strength. A smaller, lighter boned person may have a poor t-score but nice strong flexible although small bones. This is why the FRAX was developed, to take into account other factors.

[HeronNS in reply to benn123]

As an example, my t-score was osteopenia, which normally would not trigger recommendation for bisphosphonates. However, because I had had a tibial plateau fracture in the recent past, plus was on corticosteroids, the FRAX determined that I should receive medication. Without meds, just with the right exercise, nutrition and a few supplements, I improved my t-score enough that the recommendation for medication was dropped.

[benn123 in reply to HeronNS]

Thank you so much for all that information. This is so scary to me. I have exercised my whole life and still walk 8 miles a day as well as stretching. My doctor wants me to go on medication and I want to fix this myself. All the information can be very over whelming. How do you know if your bones are strong even if you have a low T-score? Again....Thank you!!!!

[HeronNS in reply to benn123]

If you have been living a healthy life, and the cause of your bone thinning is not instantly apparent, as it might be had you broken a leg and been on steroid treatment, for example, I trust your doctor has run the necessary tests to rule out "secondary causes of osteoporosis". Google that phrase. The Canadian Osteoporosis Society has a good section on that, as do other sites. One fairly common cause is problems with the parathyroid (not same as thyroid) which would prevent any medications from working, yet, once dealt with, bone density can begin returning naturally. There are other conditions also.

[HeronNS in reply to benn123]

There is no feasible way to test bone strength. Look up 'healthunlocked my osteoporosis journey' (use google, not the HU search function ) for my story. Even if you opt for medication there is a lot you can do to help yourself. Be cautioned, however, the older OP drugs seem to be safer than newer ones, that is the bisphosphonates, like alendronic acid, over anything which has a scientific name ending in "mab", for example, which have been found to come with a suite of unintended , often disastrous, consequences. These newer drugs should never be first line treatment, although there are people for whom they prove necessary.

[Kitchenbuddy in reply to HeronNS]

Great newsHeronNS. Maybe there is hope for us who wishes natural health cures.

[pansies7 in reply to Mark_ABH]

Hi Mark, I have used both the American Bone Health assessment and also the WHO Sheffield fracture assessment and I did get different results, especially for my hip. My DEXA numbers show severe osteoporosis, however, I do not have any other contributing factors so my fracture assessments do not look nearly as bad as my DEXA scores imply. My DEXA report seems to be quite limited, the people posting here have a lot more info and detail on their reports. I think I will call the hospital radiology and ask about the lack of detail on my radiology report. I had wanted to run my numbers through the BMAD calculator just to see if this has any effect. I do not know if I am considered "small boned" or not...