Update on my Osteoporosis: Hi everyone... - Bone Health and O...

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Update on my Osteoporosis

Kaz1607 profile image
38 Replies

Hi everyone, although this is only my second post, I do keep an eye on the weekly emails. I just thought I would share my experience of my osteoporosis journey since being diagnosed in October 2015, as I know there is so much confusion over whether to take the meds. or not. At that time my scores were, spine t-score of -1.7 , hip -2.6. As I am only in my fifties, I declined the AA prescribed and decided to embark on the exercise/diet route. I would mention that I had just had surgery and gone straight into the menopause. Everything against me really! So I incorporated prunes, nuts, seeds and calcium rich food into my diet. My exercise involved lots of walking, a weekly dance class and I tried weight bearing exercise but did not like it so struggled to maintain it. Last May I had a further scan and was dissapointed with my scores of spine -2 and hip -3. I expected it to be honest as the years after the menopause is when bone loss is excessive. Anyway, I am still reluctant to take AA and have instead invested in a good quality weighted vest, and have taken the weight bearing exercise more seriously. I do feel like I am getting stronger as a result. Two weeks ago I had a really bad fall on the ice, although it was my upper body that took the brunt of it, I was really shook up. When I look back I am so surprised that I did not fracture, and I have not (fingers crossed) experienced one to date. I do realise that at some point in my life I will probably have to take the medication. I apologise for the length of this post but just wanted to share my story so far with you.

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Kaz1607
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38 Replies
Kaarina profile image
Kaarina

Hi Kaz

Thank you for sharing. It is always good to hear how others are managing their Osteoporosis. It comes as a great shock when I fall and my first two thoughts are always "Can I get up and I hope I have not fractured". I also know how frightening it is to fall. I lose my confidence and have to make a fairly quick decision of "getting out there again" I have not fractured on any of my falls. Not fallen for a goodly time now either, thank goodness. Do let us know how you go on.

Kaz1607 profile image
Kaz1607 in reply to Kaarina

Hi Kaarina, thank you for the response. Glad to hear that you have not fractured on any of your falls, let's hope you don't have any more!

TAL24 profile image
TAL24

Hello

Your story is similar to mine. I was told I had osteoporosis in my spine last autumn at the age of 54. I've no idea what my scores are as I wasn't told anything other than 'take the meds' (This was over the phone from doctor in the practice that I'd never consult as I find his manner condescending)

I've decided, after reading everything I can find on the subject, not to take the pills, and go the diet and exercise route. I'mont sure what good it's doing (if any) but I did have a bad fall (in the road, on black ice) and was fine.

So, I guess we will see. I've had no follow up from the practice, and I don't except any!

Keep well.

Kaz1607 profile image
Kaz1607 in reply to TAL24

Hello thank you for the response. It's shocking that you were given the meds. over the phone! You can request your t-scores from them if you wanted to find out. My first scan, I was told my bone density was normal. It was only due to the fact that I had read up on the condition and knew my scores were not in the normal range. I went back to the doctor and I was prescribed AA and told to return in 5 years! Take care.

Kaarina profile image
Kaarina in reply to TAL24

Hi TAL24

It really is a good idea to have a copy of the DEXA scan, first of all to know your T scores and also should you have another DEXA you may be able to compare them if done on the same machine or at least get some idea as to how the condition is going.

You are entitled to have a copy and the receptionist at your surgery will be able to run one off for you,so you do not have to have any communication about it, with your most unhelpful doctor.

Mistydawn profile image
Mistydawn in reply to Kaarina

Yes, I agree. I always get a copy the scan. As you say, can then compare

Mistydawn profile image
Mistydawn

Hi Kaz, thanks for sharing.

I was diagnosed with osteoporosis of the lumbar spine in March 2015 and declined the bisphosphonates too relying on diet, exercise and supplementation with a calcium/vitamin D and other bone vitamins and minerals preparation. I too am in my fifties.

A year later my consultant requested a repeat DEXA and my readings had got slightly worse with some osteopenia in my hip. Again I declined medication.

DEXA repeated a week ago and although I have not got my results officially, looking at the results on the screen after my scan it looked like my readings are the same as they were in 2016. I am so pleased they have not got worse...

Oh, and yes I do worry about falling.

Misty

Kaz1607 profile image
Kaz1607 in reply to Mistydawn

Hi Misty thank you for the response. I am sure you are aware but the meds that they prescribe can cause brittle bones in the long term, how does that work??? Good luck with your impending results. Please let me know how you get on. Karen

Mistydawn profile image
Mistydawn in reply to Kaz1607

Exactly that Karen! Hence the reason I won’t take them...

xx

Holly10 profile image
Holly10 in reply to Mistydawn

Hi Mistydawn

If your results stay the same as last time that is a triumph - good for you - . I have -4 in the spine and am following the same regime as you. If my next DEXA scan shows a stand still I will be over the moon. Good luck. Holly

Mistydawn profile image
Mistydawn in reply to Holly10

Hi Holly

I was so worried before I had the scan that I was truly elated when I saw the screen showing the same results as two years ago. My lumbar spine is -3.5. Still waiting for the formal results though.

I am just wondering if the prognosis is worse around the time of the menopause and then some sort of equilibrium is reached. I was diagnosed at age 54, results were slightly worse at age 55 but now same as at age 55.

Best of luck to you too Holly. When is your next DEXA scan?

Misty x

Kaz1607 profile image
Kaz1607 in reply to Mistydawn

Misty, bone loss is increased around the time of the menopause and for several years after. Then I believe it does level out. Hope this helps. Karen

Holly10 profile image
Holly10 in reply to Mistydawn

Hi Mistydawn

I think you are right - more bone is lost around the menopause and it is supposed to ease off afterwards and I hope that is what is happening for you, but unfortunately that hasn't happened in my case. My consultant tells me he thinks I have been losing 2% a year for quite some time, that is why I would be so happy if, as a first step, I could at least reduce that figure,

I am not due another DEXA until next year. I will post the results on this site. Best wishes, Holly

Mistydawn profile image
Mistydawn in reply to Holly10

So sorry to hear that Holly. Did your consultant say why you were continuing to lose 2% every year? Is there an underlying cause?

I do hope you gain some stability. Yes please keep in touch x

BadHare profile image
BadHare

Sorry to hear about your fall, & hope you're recovered!

Don't forget to add some K2 foods to your diet for good bone health. I eat kefir daily, & occasionally some brie, though there are other fermented foods you might prefer. Nuts & seeds are good for boron. :)

Kaz1607 profile image
Kaz1607 in reply to BadHare

Thank you. I actually forgot to mention in my post, I take a Vietnam D supplement which includes K2. Unfortunately I don't like cheese but drink milk and have yogurt twice a day. I think we are constantly learning about our condition and I will look to introduce kefir. Take care.

BadHare profile image
BadHare in reply to Kaz1607

You're welcome!

Fran57 profile image
Fran57

Hi. I’m always interested to hear others ‘ experiences 😊

I was very shocked when diagnosed with osteoporosis just before Christmas. I had a freak fall and fractured a pelvic bone- I reached almost 60 without ever breaking a bone and being ( or so I thought) really healthy!

Anyway I had to really push to get copies of my Dexa scan and was just prescribed AA as a matter of course. I don’t really take medication and certainly don’t take it without doing some research! I feel I could pass an exam now! I certainly knew a lot more than my (12 year old) GP.

I am also going to try to improve things by diet and exercise.

But- I must recommend that you ask for your parathyroid hormone levels to be checked.... I had never heard of them, but my calcium level in my blood is a tiny bit raised and so I asked and found my parathyroid hormone levels are also slightly raised- quite a common cause of osteoporosis- I had no idea!!

You can take all the medication you like, but if you have a parathyroid problem it won’t make the slightest difference!

I am seeing a consultant later this month who may remove a gland and this should improve my bond density by the same amount as AA! The operation is minutes long and although I’ve never had an operation before it sounds a good option to me.

Hope that helps,

Best wishes, Fran 😉

Kaz1607 profile image
Kaz1607 in reply to Fran57

Hi Fran, thank you for your response. I hope you a recovering well from your fracture and yes it does help. I have never heard of being tested for parathyroid levels and will certainly look into it. There is not enough information forthcoming from GP's who just send you off with the tablets. I had to ask for my vitamin D levels to be checked, which were fine at the time, but I have been prescribed calcium tabs too without even checking my calcium levels! Take care, Karen

Kaz1607 profile image
Kaz1607 in reply to Fran57

Fran, just reading through the posts, as a matter of jnterest what is a normal parathyroid reading do you know? Thanks. Karen

Fran57 profile image
Fran57 in reply to Kaz1607

Hi Karen.

Yes, it should be less than 6.4 and mine is 7.4 This is apparently only slightly raised but, from what I've read, it won't get better without the Parathyroidectomy .

I see the consultant on Tuesday.

While I'm here, I have had a painful knee( outside of right knee, just below the kneecap) for a week or so. It hurts mostly after I've been sitting or after bed and get up to move.

Is this linked to the osteoporosis or yet another ache??

Thanks everyone.

Fran 😉

Kaz1607 profile image
Kaz1607 in reply to Fran57

Thanks Fran sorry to hear about your knee. I was always under the impression that OP doesn't actually cause aches and pains unless obviously a fracture, but I may be wrong.

Good luck with the appointment on Tuesday.

Keep us posted.

Karen

Fran57 profile image
Fran57 in reply to Kaz1607

Thanks Karen.

Will do!

😉

Alli1 profile image
Alli1

Hi Kaz

I would be interested to know what sort of weighted vest you use please as I have been considering buying one to help with my thinning bones

Thanks

Alli

Kaz1607 profile image
Kaz1607 in reply to Alli1

Hi Alli, I bought mine off the Betterbones website. It was very expensive but I consider it a small price to pay if it helps my bones, plus I am saving money by not taking the medication ( though that is not the reason why). You can get cheaper vests off Amazon. Mine is designed specifically for women, is fully adjustable and has 18 removable weights. I have built up to wearing 12 and I would highly recommend it. Hope this helps. Karen.

HeronNS profile image
HeronNS in reply to Alli1

Hypervest is excellent because you can add just a couple of ounces at a time. I had to import mine from Texas (I live in Canada) but it was well worth it.

osteopenia3.com/Weight-vest...

hyperwear.com/blog/weighted...

Alli1 profile image
Alli1

Thank you for the info . Is the Betterbones a U.K. stockist I suppose you get what you pay for in the end and health is important

Ali

Kaz1607 profile image
Kaz1607 in reply to Alli1

No an American company. You have to pay an extra charge for the goods coming into the UK too. It is very well made though and I agree you get what you pay for. Good luck. Karen

Alli1 profile image
Alli1 in reply to Kaz1607

Thank you

😊

Kaarina profile image
Kaarina in reply to Alli1

This is the website: betterbones.com/shop/exerci...

Jessie1234 profile image
Jessie1234 in reply to Alli1

I bought the Hypervest from a UK company in January, sports-thieme uk, paying £10 to have it delivered to N. Ireland. It’s American made specifically for ladies and while researching I discovered that the company also makes them for Better Bones. I believe it’s normal for bone density to fall a little each year as we age but hopefully with diet and exercise we can hold that back. Anyway they now say it’s quality or testile strength of bone that counts not density.

Alli1 profile image
Alli1 in reply to Jessie1234

Thank you I will have a look at that 😊

Crunchienut profile image
Crunchienut

Hi Katz, I would be really interested to hear about the weighted vest you mention. I was diagnosed in January 2016, 4 years into menopause. The DX was a shock because I walk and hike miles with my dog and do Pilates and Tai Chi! I also decided that no way am I taking the awful medication, but to go the suppliment route and eat more green leafy veg (YUK!) I also decided to carry on horse riding and not wrap myself up in cotton wool. Mind you I wear a back protector now and don¨t go crazy!

I did loads of research into what was the best bio available suppliments to take and came up with LifeExtension¨s Bone Restore. In one year my hip score total has gone from -2.3 to -2.0

and my spine total from -3.2 to -2.9. Hooray!

best wishes

Kaz1607 profile image
Kaz1607 in reply to Crunchienut

Hi Crunchienut, your post has given me hope that bone density can be increased by supplements alone and I will certainly look into buying the bone restore. Your results are amazing. Please feel free to ask me any questions about the weighted vest. The one I bought is very well made, fully adjustable and has 18 pockets for weights (I am currently at 12). I'm not sure of the cost as I had to pay a customs charge also as it was from USA. Kind regards. Karen

Seasfree profile image
Seasfree

Hi Kaz, I’m new to this forum... I’ve been considering a weighted vest, but have read some conflicting articles about their use with spinal OP. My T scores are bad -4.5😳 I’m doing good nutrition and supp with K2, D3, C, zinc, Mg, collagen peptides, and I drink mineral rich herbal infusions of nettle, horsetail, and oat straw. Also on bio identical topical estrogen and progesterone. I walk, and use free weights for the upper body/back muscles. My hips are fine... Despite the bad score, I will never put those poison OP drugs in my body!!!

Does a weighted vest do anything fir the spine and is it safe for use with spinal OP? I know I’d need to add weights over time to avoid injury. Just not sure if it worth the investment if it doesn’t really do anything for spinal bones.

Thanks!!! Love reading all the afirmations to stay away from the medications!

HeronNS profile image
HeronNS in reply to Seasfree

You should probably make a new post as this thread is very old and will only be seen by people who followed it the first time.

I use a weighted vest. It is one which allows you to add very small (about 2 ounce) weights at a time, so you can start with next to nothing and work up very very slowly. The bones become more dense as they respond to the challenge of additional weight, so it's not carrying the heaviest load you possibly can, it's gradually increasing so that there is always a new challenge. It can take a year to add a pound, but during that year the bones are responding to the additional weight and continually becoming stronger.

I would NOT get a vest which has larger weights - four ounces or more - if you have any concerns whatsoever about the ability of your vertebrae to respond and for you to avoid injury. Although expensive,he kind I bought I expect will last me the rest of my life:

hyperwear.com/blog/weight-v...

I started with five pounds because I was used to carrying that much in a backpack. Each person should start where they know they are okay. I should add that the vest is exponentially more comfortable than a backpack, the weight is distributed across the entire torso so there should be no feelings of strain on the back or shoulders.

Seasfree profile image
Seasfree in reply to HeronNS

Thanks Heron NS! I’m still trying to figure the forum out, and reading lots of different threads...

How long have you been using the weighted vest, and have you improved spine numbers with it? I know bone formation is a very slow process.

Thanks for the link to the vest. How often did you add weight? I will be sure to go slow.

Thank-you!!

HeronNS profile image
HeronNS in reply to Seasfree

Yes, all but one of my numbers improved in the year between two DXA scans, and the last number stayed the same. The t-score they count improved from -2 to -1.6. I do know of people who have improved their bone density from the osteoporosis level without use of medications.

Here's my account:

healthunlocked.com/pmrgcauk...

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