Has your bone density T score improved?

No other drug whatsoever.  Just HRT.  When I have time I will give you my "full story", but that was back in 1999.  This year my tscore on right hip has crept up to -2.4 so after a 14 year break from HRT (and now aged 59).  I have been put back on transdermal bio identical HRT for 5 years and then been told to go on a 50% dosage after then to maintain my bone density

I shall look that particular hrt up, having had breast cancer 13 years ago when 47 I cannot be prescribed hrt but maybe there are nkw hrt drugs I can take.

I look forward to your full story.

Hi

Great to see someone else on HRT for osteoporosis. I've been on the gel transdermal HRT since about 2012. It's a life long thing apparantly, my GP's were not happy about it at first, but seem fine about it now. It increased my density measurements, but then it just stabilised, so the dr told me to increase the squirts, no dexa scan since then, but feel OK.

I am 60 and I was given testosterone gel too.

Who told you to go on HRT? a GP or a specialist??

Glad it's working for you.

Here's my hrt experience:-

In 1999 I was diagnosed at 41 after going through an early menopause with Osteopenia and had a Dexa scan reading of 0.785 g/cm2 in my left femur neck which gave me a Tscore of -1.62. I am in the UK and my GP put me on HRT. After just 12 months she ordered another Dexa scan and my BMD in left femur neck had increased to 0.849 g/cm2 and a Tscore of -1.09. There was a note on my file telling my doctor that I should not have been sent for another reading for 2 years on the basis that change is unlikely to be sufficient to be measured over one year but the Radiologist consultant says, "clearly this would have been wrong in view of the marked improvement in the reading".

I continued to have 2 yearly Dexa scans with improvements each time. After 5 years of HRT I decided to come off it as this was the time of "scares" regarding its safety and the fact my Mum had just died from ovarian cancer (and her mother had previously died from breast cancer). My GP transferred me to Raloxifen (SERMS). I stayed on this for 8 years until 2012 and although I had scan in 2012 showing Osteopenia for the first time it was just -2.0. My spine readings have never dropped into the -2.0 readings.

2 yearly Dexa scans continued.

I am of petite frame with very small wrists and measure 5 foot 1 inch and have exercised regularly since I was 30 and am very fit and active. I have never fractured.

I have never been able to take the Calcium supplements recommended to me by my GP as they always made me nauseous.

In March 2017 at 59 years of age (18 years on from first diagnosis) my hips are showing a Tscore of -2.4 and -2.2. 

I have a work colleague who has very severe Osteoporosis and I want to do all I can from ending up with the multiple fractures she endures. She has also had to have both sides of her jaw rebuilt through the Bisphosphonates she was prescribed. 

I have made the decision to take transdermal bio identical HRT, 13 years from my last use of oral HRT, and 18 years on from going through the menopause.

Osteoporosis/Osteopenia is a chronic condition and one that needs to be managed throughout my later years. I am not totally against Bisphosphonates, but have been told by my specialist I can stay on hrt for 5 years and then go on a 50% dosage to maintain my bone gains for 5 years. By that time I am hoping that medical science will find a drug that helps us to increase new healthy bone and not just make us cling on to our old crumbling bone.

This is not a decision I have taken lightly. For the last 8 months, I have researched and researched and had an open mind to various drug and natural regimes.

I am also taking daily:-

Calcium

D3

Magnesium

Zinc

Potassium

Olive leaf (Bon Olive)

Tumeric

K2

Silica

I also eat 8 prunes a day, 12 raw almonds, 6 dried apricots, 6 walnuts, yoghurt, and try to eat protein with every meal plus oily fish 2 times a week and try to eat a calcium rich diet with green vegetables and salad at least once per day. I also start most days with a fortified breakfast cereal.

I limit myself to 1 coffee a day and try to eat a diet low in sugar.

I walk 3 miles a day for 3 days a week, do resistance weights and bands 3 days a week.

I know it is a "shotgun" approach but the thought of not being independent and active fills me with total fear.

I have had many sleepless nights and worry filled days since my diagnosis. With a feeling of abandonment by my health professionals. I was told by phone how close I was to Osteoporosis and that there was a prescription for Bisphosphonates waiting for me to collect. 

It is a lonely place but now I have an action plan I feel more at ease.

I hope this helps someone.

Here's my hrt experience:-

In 1999 I was diagnosed at 41 after going through an early menopause with Osteopenia and had a Dexa scan reading of 0.785 g/cm2 in my left femur neck which gave me a Tscore of -1.62. I am in the UK and my GP put me on HRT. After just 12 months she ordered another Dexa scan and my BMD in left femur neck had increased to 0.849 g/cm2 and a Tscore of -1.09. There was a note on my file telling my doctor that I should not have been sent for another reading for 2 years on the basis that change is unlikely to be sufficient to be measured over one year but the Radiologist consultant says, "clearly this would have been wrong in view of the marked improvement in the reading".

I continued to have 2 yearly Dexa scans with improvements each time. After 5 years of HRT I decided to come off it as this was the time of "scares" regarding its safety and the fact my Mum had just died from ovarian cancer (and her mother had previously died from breast cancer). My GP transferred me to Raloxifen (SERMS). I stayed on this for 8 years until 2012 and although I had scan in 2012 showing Osteopenia for the first time it was just -2.0. My spine readings have never dropped into the -2.0 readings.

2 yearly Dexa scans continued.

I am of petite frame with very small wrists and measure 5 foot 1 inch and have exercised regularly since I was 30 and am very fit and active. I have never fractured.

I have never been able to take the Calcium supplements recommended to me by my GP as they always made me nauseous.

In March 2017 at 59 years of age (18 years on from first diagnosis) my hips are showing a Tscore of -2.4 and -2.2. 

I have a work colleague who has very severe Osteoporosis and I want to do all I can from ending up with the multiple fractures she endures. She has also had to have both sides of her jaw rebuilt through the Bisphosphonates she was prescribed. 

I have made the decision to take transdermal bio identical HRT, 13 years from my last use of oral HRT, and 18 years on from going through the menopause.

Osteoporosis/Osteopenia is a chronic condition and one that needs to be managed throughout my later years. I am not totally against Bisphosphonates, but have been told by my specialist I can stay on hrt for 5 years and then go on a 50% dosage to maintain my bone gains for 5 years. By that time I am hoping that medical science will find a drug that helps us to increase new healthy bone and not just make us cling on to our old crumbling bone.

This is not a decision I have taken lightly. For the last 8 months, I have researched and researched and had an open mind to various drug and natural regimes.

I am also taking daily:-

Calcium

D3

Magnesium

Zinc

Potassium

Olive leaf (Bon Olive)

Tumeric

K2

Silica

I also eat 8 prunes a day, 12 raw almonds, 6 dried apricots, 6 walnuts, yoghurt, and try to eat protein with every meal plus oily fish 2 times a week and try to eat a calcium rich diet with green vegetables and salad at least once per day. I also start most days with a fortified breakfast cereal.

I limit myself to 1 coffee a day and try to eat a diet low in sugar.

I walk 3 miles a day for 3 days a week, do resistance weights and bands 3 days a week.

I know it is a "shotgun" approach but the thought of not being independent and active fills me with total fear.

I have had many sleepless nights and worry filled days since my diagnosis. With a feeling of abandonment by my health professionals. I was told by phone how close I was to Osteoporosis and that there was a prescription for Bisphosphonates waiting for me to collect. 

It is a lonely place but now I have an action plan I feel more at ease.

I hope this helps someone.

Which supplements did you take Anhaga? And any specific changes to diet aside of just healthy eating? 

Sorry for delay Dee. Computer problems. I take calcium citrate in a formulation which includes D3 and magnesium and a couple of other things. I also take vitamin K2. I eat lots of leafy greens and walk a lot.

Great thanks Anhaga, Where did you buy this concoction of supplements?

I live in a small city in Canada and none of my supplements are through prescription. I can get some things at pharmacy, but K2 for some reason is only at places selling health foods, plus the health foods store seems to have better formulations of bone supplements which include lots of micronutrients. I don't take a formulation like that all the time because it's expensive, but once in a while I'll buy a bottle just in case I'm low on micronutrients like copper, etc. I get an oily vitamin D3 at pharmacy.

It' so encouraging to hear that Alison many thanks

Do you take vitamin k2?

Hi,

I am at the moment because I have low beneficial bacteria. I am taking probiotics.  I read that the bacteria in your gut make vitamin K2.  I am going to take it for a couple of months and then hopefully I should be making my own.

You need to do a bit more research as we are, apparently, not very efficient at making K2.  we used to get what we needed from grass fed animals, but now that our animals are grain fed they can't make K2 for us and we are becoming deficient.  We do get small quantities from fermented foods.  Indeed the supplements are derived from natto, Japanese fermented soybeans.

Hi. I am a bit confused. Are you suggesting that OP is caused by too much calcium and /or oestrogen. Perhaps I have just misunderstood your post and, if I have, I apologise 

I found this comment curious also, and just found this (haven't checked the whole text and it is from 2005)

https://www.ncbi.nlm.nih.gov/pubmed/15949902

It posits that maintaining high BMD throughout life can be counterproductive, but also that maintaining optimum estrogen level is beneficial.

Will check on that Anhaga. Thanks. Keeping higher levels of oestrogen after menopause has been shown to increase breast cancer and this is why HRT is not recommended long term for either menopause problems or as a helping hand for OP

Yeah, I was pleased I never went that route.

Great short term for the hot flushes. It got me through a very difficuilt period. I still have the hot flushes but stopped the HRT over a year ago. My aunt had breast cancer so my risk was too high to stay on it long term. Reading the link you posted now. 

Hi, it gets worse doesn't it.  It is so hard  to know what is the best information.  All I know is that I don't believe the medical profession really know what they are doing.

I saw my GP this morning and had a discussion about osteoporosis and also vit D deficiency.  When I tested deficient earlier this year the receptionist (not the GP) told me to supplement with over the counter vit D.  No advice on what dose etc..  I raised this with the GP this morning and he said they realised they had got this wrong and were now giving people information leaflets!

Wow.  What year is this?  I think we've known about importance of Vitamin D for many years!  Glad your doctors are catching up.

Hi. Yes I am.  From what I have read Progesterone stimulates osteoblasts which build bone.  Oestrogen stimulates osteoclasts which break down bone. And the calcium to magnesium intake ratio should be at least 2/3.

The relative excess of oestrogen to progesterone, is in effect progesterone deficiency, and is causing osteoporosis, rather than oestrogen deficiency.

I have just looked up Bonviva, the drug that my GP is recommending.  It sounds horrific, but worse than the symptoms, it says not to take if you are lactose intolerant, which I am.  I have IBS and my GP knows this but he is still recommending it.

Also the instructions say to ensure adequate intake of calcium and

vit D.  So it could be the vit D that improves the bones and not the drug at all!

Personally I believe nutrition, exercise and supplements are the way to go.  I'd have to be in a pretty bad way to agree to any of the osteoporosis drugs.  In case you've missed it I improved my t-score from -2 to -1.6 in one year completely through natural means and they are no longer even recommending the drugs, which they initially had and which my doctor wanted to put me on even before a DXA scan!

I am sorry to hear you are having such a confusing time with the conflicting advice. My OP treatment has been so much better than most people seem to receive. After my first fracture, I was offered a dexa scan but didn't think I needed it. After the second, I had one and I was so shocked to discover I had OP as my diet, exercise and life style were what most people change to after  they have been diagnosed. I was not forced to do anything, but given all the facts to think over. I started taking calcium and D3 on prescription immediately. I decided to take Risedronate a few weeks later and after 2 years had a great result. Continuing for a further year, my choice, and expect to see sufficent improvement to stop them. My worst scores were -3.4 and -3.5. Now -2.4 and -2.9. There is also a walk in clinic I can go once a month, but I can call 5 days a week if I have any questions. I have had no side effects whatsoever, despite being at higher risk due to having had radiotherapy for a brain tumour. Everything seems to carry a risk. I suppose we have to weigh up the risks and decide what is best for us

With 2 fractured vertebrae, I was in a pretty bad way, but I too have made great progress. Did cutting down on your medication help improve your bone density and do you know if this meddication contributed to your low bone mass in the first instance?

I have already decided to go the natural route.  I already live like that anyway.  It was just scary when they told me what the results are and I thought, 'that's it my life is over', because I knew I wouldn't take any drugs for it.  After I did my research I felt much happier.

Your results are great, hopefully mine will be too.

Thank you.

All the best and let us know how you get on.

Piano player, when I first had my DXA scan I was told, incorrectly it turned out, that I had osteoporosis and had exactly the same reaction. I felt "crushed" pun intended.  But when after two months I finally was told my t-score I literally felt a great weight lifting form me and felt lighter and lighter all that day.  By then I'd already started doing all I could to strengthen my bones so I've simply carried on.  

Because i had no baseline scan there is no way to know.  I was probably at risk anyway because I had lost an awful lot of weight during the 14 months or so of undiagnosed PMR, and pain made it harder for me to exercise.  I can remember, I was still working at the time, one day having to ask a co-worker to come over to me and take a pile of books from my arms because I was suddenly not able to carry them further to put them down.  Prednisone is supposed to have the greatest effect during the first few months and of course I'd been taking it for about three months before the scan.  I did remain above 5 mg for about seven months after the scan, still a level which can affect bones, in fact pred may affect bones at even lower dosage but no one knows for sure.  So I can't be sure of blaming pred for the osteopenia, but it undoubtedly didn't help, and I'm very fortunate I was able to catch and reverse the process in time!

Very true Anhaga. If I had caught mine earlier, I would have done exactly as you have. Unfortunately I was well into the OP bracket before I was diagnosed. However it is great that we are both making good progress and getting on with living. I have no idea what caused my OP as my diet is excellent and my exercise regime is constant. Just unlucky.

New to this, just been diagnosed with osteoporosis. How do you determine how much of a supplement to take? Any information would be helpful, just getting stared on this journey. I do not want to take the medications that are out there. Thank you!

Debra, I only share my own experience, I have no medical training.  I suggest that you take the dosage recommended by the manufacturer of the supplement, and in some cases what your doctor says.  Don't be surprised if your doctor doesn't know anything about Vitamin K2, a lot of them don't and even if they've heard of it may still deny that it helps treat osteoporosis.  However, Japanese research has shown that Vitamin K2 does help prevent and treat osteoporosis.  Our supplements are derived from a Japanese fermented soy called natto.  You can find lists of non-dairy sources of calcium, too, from Google.  Generally speaking, it appears that fermented dairy as found in some aged cheeses, yoghurt, etc, actually help the body absorb and utilize calcium.  Liquid milk not so much.

The other part of improving bone health and strength is, of course, weight bearing exercise.  Depending on your fitness level or whether you t-scores are worrisome, you might want to consult with a knowledgeable physiotherapist.  Exercise like tai chi helps sense of balance, which reduces risk of falls hence lowers fracture risk.  Nordic walking helps keep spine upright and straight and improves upper body strength.  Even water based exercise can help, although it's not weight bearing as such, as anything which strengthens muscles means they exert greater pull on bones and thus indirectly have a slight effect on encouraging new bone growth and improved density.  

Thank you for your reply.  Debbie