Anyone else have a -4.5 T-score?: Hello. I just... - Bone Health

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Anyone else have a -4.5 T-score?

lightbody
lightbody
44 Replies

Hello. I just found out a week ago that my T-score is -4.5 and I have severe osteoporosis. I have yet to hear or read of a score that bad. Even my doctor said the words "this score is bad". I broke a toe last year but have not broken anything else. I am on disability since I was 62 for spine issues and foot pain related to bone issues. I am 64 and this was my first bone scan. I have chronic pain in my spine and am wondering if there are already stress fractures. I am making an appt. to see an endocrinologist, at the recommendation of my gynecologist, to test for parathyroid disease, which can cause severe bone loss. I am at a loss for words to describe how devastating this news is for me. Suddenly I am fragile. I shouldn't bend or rotate the spine, as I used to do in some of my favorite Yoga poses. I cannot lift my grandchildren or grocery bags. I have yet to see that someone else has a T-score as negative as mine. I am not ready to take a toxic drug, and received a phone call from my doctors office that my primary physician had seen my bone scan and recommended Fosamax. I replied "I cannot agree to take a toxic drug via a phone call. I feel I deserve a consultation with my doctor. I need to create a team of doctors and to speak to them in person. This is serious. Those bone hardening drugs are not sustainable and eventually do more harm than good". The woman who had called from my doctors office agreed with me and I have an appt. this week to talk to my doctor in person. But seriously...how can this be the way patients are given those toxic drugs. It seems irresponsible. Over the phone? I researched and will be taking plant based calcium and strontium and I will ask to see a Physiatrist for advice on how to move my body safely during exercise and daily activities. I will change my diet, which is already fairly healthy. I just wonder if anyone else has had such a negative T-score and can share with me. Thanks.

44 Replies
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Sunseaandsand

Hi,

Sorry to hear that you have been delivered the news of your Osteoporosis in such an insensitive way.

You do not say if the t-score you mention is in the hip or the spine.

It may be comforting news to know you are not alone in your low score.

Mine at my last scan was -4.7.

If any fractures were suspected(which would have shown on your dexa scan) they would then have sent you for X-rays to confirm them.

I also have other issues in my spine such as osteoarthritis which adds to the chronic pain I have.

Perhaps this is a possibility for yourself??

Is it possible you could ask your doctor to be referred to orthapedics,and from there you would most probably have an MRI of the whole spine.

This of course would be the best way of knowing just what is giving you the pain in your back.

I hope this is of a help to yo in some way.

In the meantime try to focus on the fact that there are many things you can do and above all you are still fully mobile.x

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lightbody

Thank you so much! I am so glad I joined this group! I did not even know that if I already had stress fractures they would have shown up in the Dexa scan! Now I know I can ask those questions. I am not sure my feet were included in the scan, but I am having increased pain and have been staying off my feet lately. Sorry to hear of your score of -4.7, which in a way is comforting. Do you take any of the drugs recommended for osteoporosis? I would consider them short term. I am already super sensitive not only to many foods but even more so to pharmaceuticals. Your response has been very helpful. All the best to you on your journey.

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Sunseaandsand

Hi,

The dexa scan will not have included yourfeet.

It is taken of the hips and the spine.

I have been on different treatments for years now, and unfortunately I do not tolerate them well.

Surprisingly like yourself I am insensitive to certain medications and also different foods!!

I have often wondered and asked if there could be any link to my osteoporosis but have always drawn a blank.

Please read through my posts, you may find them helpful and also the replies to them.I must say though not everyone is the same and people do tolerate and do well on the treatments.I though have not.

Please talk things through with your doctor and ask all the questions you feel are relevant to yourself.

Good luck and please let me know how you get on.

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lightbody

thanks so much. i will look through your posts and replies. this is all so helpful.

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Nanaedake

Margaret Martin's Book, Exercise for Better Bones gives you advice on exercise and she does one for yoga too so you can continue to do yoga with the right adaptations.

I found out my T score was low, - 3 in lumbar spine but I increased my exercise following advice on the Canadian osteoporosis society website and Margaret Martin's books. I now do Pilates, yoga, Zumba, jogging and resistance exercises. I built up slowly over 2 years. Jigging may not be advised for you but you could do Nordic Walking or similar. Don't give up or feal defeated.

You could try the drugs to see if they suit you if you wanted to. I have friends who are fine on them. I wasn't. I'm waiting to hear if there are any sensible options at next hospital visit.

Just work out an exercise plan, some type of suitable exercise every day. If you've had no fractures it doesn't make sense to stop exercising. Main thing is not to bend back forwards it seems.

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lightbody
lightbody
in reply to Nanaedake

I will look into Margaret Martin's exercise book. You sound super active. I cannot jog because of degeneration in my lower spine, which has been developing long before this diagnosis of low bone density. And my feet hurt too much to jog...but I can walk and we have an elliptical machine at home, so luckily I can get exercise that way. I used to be a ballet dancer and aerobics instructor, years ago, and got used to modifying my activities because of back problems. I am already on disability for physical issues, so this diagnosis was hard to take, especially realizing how much more I must modify how I move through daily life in general. I have always been very active. I am glad to hear you can still be so active. I will find out more about activity recommendations for me. I want to see my DEXA scan with my own eyes. Thank you so much! I am grateful I found this group. All the best to you.

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AnnieW55

Are you very petite? If you are small boned and around the 5’ tall mark your scan results could be looking worse than they actually are. This is due to the machine calibrations being set to more “normal” (no rudeness intended) measurements of the average population which causes errors in us smaller folk.

Some people have been put on the drugs when they “only” have osteopaenia so it is up to us not to panic and do our research.

I know you’re numbers are low but as this is your first scan try not to panic as you have nothing to compare it with (further scans, when you have them, should be done on the same machine if possible as different types of machines have different calibrations and are not directly comparable). It may be that your optimum bone density wasn’t that great to begin with and as we aren’t generally tested until around/after menopause that’s something we’ll never know. Your known health issues could be what is causing your pain - getting your parathyroid glands checked out is a good idea as is looking for any other underlying causes for the osteoporosis.

I don’t know if you are aware of vitamin k2 but it is an important part of the diet and does a whole lot of good things. If vit d levels are low take vit d3 with k2 and make sure you get your calcium from food as much as possible. Best wishes.

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lightbody

I am very petite. I lost an inch and a quarter in height and am now 5'1". Wow, your information is coming at the perfect moment in time. I have been reeling from this diagnosis. I had read something about the DEXA machine calibrations. Your reply is so helpful. I am in considerable back pain, as we speak, and my feet as well, so something is going on. I am on disability already for disc degeneration and other body stuff, scoliosis at 7 on the scale, which is not considered "bad". I will bring all this information to my GP this week. yes to K2, will just be starting to take it, and d3 have been taking...I am still trying to get an appt. with an endocrinologist and have had 9 major symptoms of parathyroid disease for many years...doctors would just scratch their heads but never tested me. In a way, this bone density journey is helping me get other medical tests, like parathyroid, that I have needed for a long time. In just 24 hours this site has been hugely helpful and comforting. Yesterday I was depressed. Today, after all the replies, I feel empowered and informed. Thanks so much!!!

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AnnieW55
AnnieW55
in reply to lightbody

If you are in the USA/Canada also check out inspire.com - it is another forum this time from the National Osteoporosis Foundation and is geared towards that side of the world. I’m in the UK and also use that forum as lots of interesting posts/advice there too.

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lightbody
lightbody
in reply to AnnieW55

thanks! i will check it out!

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vick1

Hi and sorry to hear about your T score and the worry you are having. My T-score in 2002 was -3.8. I started taking Fosamax and continued taking it for 10 years, then I had a 7 year break from it, bringing me up to this year. In all that time, 17 years, I never broke a bone or had any side effects.

Unfortunately, this year I fell backwards and smashed my ribs on a concrete window sill breaking 4 ribs - who knows if it was the osteoporosis or if anyone else would have broken their bones too, falling like I did. I had a scan and my T-score is dropping again so I was advised to go back on the Fosamax, as I had a 30% chance of breaking my spine in the next 3 years . I put off doing this for a month while I thought things over and am now taking Fosamax again. No one wants to take drugs but in the end you must decide what's right for you. I felt a 30% chance of breaking my spine was too high a risk to take. I am being monitored every 6 months at the hospital. I hope this helps.

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lightbody
lightbody
in reply to vick1

very helpful. all the best to you. be safe

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TommyJohn
TommyJohn
in reply to vick1

Oh dear ! OP causes fractures - force causes breaks - try to distinguish if you had a “break” or a fracture - this is important as a normal fall with normal bones won’t usually fracture

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MWZ3

I am a mere five feet tall and believe that our scores are relative. I also believe that the drugs are counterproductive. Are you taking vitamin K2? That puts the calcium into the bones which is very important. Also, check your D3 and your magnesium both of which affect your bones. The blood tests can check on most things. Have lots of veggies and fruit and a really good diet. Yoghurt is good as well. I have that every day.

My back is bad too. If you add arthritis onto the osteoporosis then it is even more of an issue. Scoliosis does make it worse too. Degenerative disc disease complicates it further.

If you have not broken a bone then don’t panic.

All the best.

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lightbody
lightbody
in reply to MWZ3

thanks so much. i started AlgaeCal and strontium...has trace minerals, k2, d3, all the bone building things. take good care.

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AnnieW55
AnnieW55
in reply to lightbody

Just noticed that you have started AlgaeCal and strontium. Please be aware that the strontium can give erroneous DXA readings. Strontium is not calibrated into the equations when working out setting on DXA machines and as it is very dense makes it look like bone density is being gained when it more than likely isn’t. It makes DXA scanning pretty much useless if taken over time (There is more about this on the inspire.com website - just put Algae Cal or strontium the search box and you’ll get lots of posts about it including from a guy called Dxaguru who is a respected DXA technologist. Not meaning to worry you here but do, check it out. The phrase if it sounds too good to be true..... springs to mind.

There is a thread from 5 months ago called AlgaeCal? Started by 2019. It gets a bit feisty but if you search for it it does give some info.

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lightbody
lightbody
in reply to AnnieW55

Thanks so much. So much to uncover on this journey. I haven't actually started the strontium, it is on its way to my house! I will read up on your suggestions.

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veriterc

As another 'midget' (result of osteoporosis - although I rather like being described as petite!) can I suggest you have hydrotherapy? Sounds as if you live in the States, and I suspect -like us in UK - the doctors overlook this ancient therapy. But it is well-used on the Continent, partcularly in France, which is considered to have best overall healthcare. Anyway, you can exercise as much as you like, and not bother about falling over. And the warm water is bliss for aches!

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AnnieW55
AnnieW55
in reply to veriterc

On the inspire.com site there is a thread that refers to snack size sisters. I like that description too 😀

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lightbody
lightbody
in reply to veriterc

I am in the US. Hydro therapy would be wonderful! But I have a chlorine senaitivity...my friend has an indoor pool, mostly saline, and I help her go in the pool and get to enjoy swimming, as well. (she has Parkinsons)I have an elyptical machine at home, thank God! My feet are hurting too much to walk vigorously right now. thanks and take good care.

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badmedicine

BEFORE YOU ARE MANIPULATED INTO PROLIA SHOTS - INVESTIGATE - INVESTIGATE- INVESTIGATE - WORST THING I EVER DID TO MYSELF -STOPPED AFTER 3!

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lightbody

Oh trust me, I have read alot about Prolia and the other osteo drugs. Thanks for the warnings. Grateful for this forum. take good care.

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Collywobbles64

Hi light body,

Sorry to hear your news, but try not to worry, there is a lot of good advice and empathy on this site.

My dexa scores as at 2019 are:

Spine T-score -4.2 a decrease of 14% since last scan 2015

Hip -1.6 decrease of 11.2%

Femoral Neck -1.7 now osteopoenic

You will often find that the first suggestion to you is to take AA. It's like a tick box that they go through and if you take it they have satisfied their criteria for dealing with this issue. I managed to get an appointment with a rheumatologist who sent me for bloods and x-rays. For me the results were positive as I had no/never had had any fractures and bloods were good. The consultant said there was no need for me to take meds as my risk of fracture was low. That said, they offered nothing else and I have problems with walking, bending, picking up things much like yourself.

For OP sufferers I think after all other reasons for our condition have been discounted nutrition becomes very important. I don't take any calcium supplements as I feel I get enough in my diet (my blood results confirmed good calcium level) but I do take magnesium malate/glycinate/ionic citrate; vitamin d3, vitamin k2 and boron as these are important for bone health. This is only since my last scan, so I won't know if it helps until my next scan.

There is a very helpful group on Facebook regarding vitamin D3 and it's co-factors regarding the uptake of calcium that you may like to look at. It's certainly helped me.

I hope you find comfort that you are not alone with this condition. Take care of yourself.

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lightbody

Thanks for your information...all very helpful. Take good care

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elery

Dear lightbody,

In April of this year, at age 65, I had a DEXA scan which showed t-scores of -4.3 in spine and -2.5 in hips. As you, I was really alarmed by this because it was obviously serious. My doctor immediately wanted to put me on Prolia and made an appointment at the nearby infusion clinic.

I went home and started looking for information, and was very thankful to find this site. Like you, I was feeling very fragile, and so frightened of falling because I was certain that if I did, it would mean fracture(s) for sure, and my life would be forever changed! Interestingly, I have had falls in the past few years and had no injuries from them--doing active things like gardening and helping cut and stack firewood. But now I am certain that if I were to fall I would be disabled. Interesting what a diagnosis of OP can do!!

The people on this site have helped me so much! Within a few days, I called the clinic and cancelled the appointment for the Prolia injection, and wrote my doctor a letter explaining my decision and the reasons why and the approach I had decided upon. I think of it as the SANE approach: Supplementation, Attitude, Nutrition, Exercise.

I have no pain and no symptoms, although have lost some in height, so there is obviously something going on with my spine. Am able to continue doing the things I love, like walking and gardening. I do bend but am careful not to arc my spine like I used to do, but to flex at the hips. Am also careful not to lift more than I feel comfortable with, but I do still carry my own grocery bags, etc. However, you have to proceed as you feel is best for you personally. Every person is different. I did not realize that small bone structure has an effect on your scores until I read this thread. Still learning so much! Margaret Martin's material has been helpful too.

None of us know what tomorrow will bring. So I try to be thankful for every day that I can still move. I hope my experience is helpful in some way. I wish the very best for you.

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lightbody
lightbody
in reply to elery

Dear elery,

I really appreciate your share. I see my GP tomorrow. A friend is going with me to help me keep track of information shared. I will be armed with my disability diagnosis and copies of pertaining topics like the toxicity of the Osteo drugs, and maybe osteoporosis testimonies and such.

I am realizing that GP's are by law required to suggest the Osteo drugs, probably. There is a liability issue, and doctors are embedded to Pharmaceutical companies. They don't spend their spare time researching on behalf of their patients, though in an ideal world, they would. We have to do the research. Which I am now doing. There is so much information out there. Like for example: bone strength in relation to bone density. Do I have strong bones but low density? I don't even know where in my skeletal structure my T-score was focused. Neither of my doctors even mentioned such a thing.

No mention of seeing a Physiatrist, which now seems negligent, and I really like my GP. But it is crazy how cavalier they can be in the way they just have their office call to tell a patient to start a toxic and controversial treatment without even a personal conversation with the patient. We need to be told how to exercise based on a physical assessment. That is what a Physiatrist can do for us.

My doctor doesn't even know what my physical disability is based on!!! I am new to his practice in all fairness, but still. He should have asked. He didn't ask. I have degenerative disc disease, multiple foot issues involving the bones, wrist issues in the tendons. I could go on. I feel like osteo patients need advocates. This forum is my advocate. I am so grateful for all the valuable information I have gotten here. Thanks for your reply. Take good care.

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HeronNS
HeronNS
in reply to lightbody

and elery There is information that indeed exercise and nutrition can improve bone density. It will be interesting to know if you are able to reverse your problems this way. I recommend you find out the best ways to protect yourselves as you do - maintaining good balace, avoiding tricky situations, and strengthening your muscles so that you are over all stronger. A good physiotherapist can give you some good exercises and instruction on how to move as when picking something off the floor, etc. Our local hospital runs a biannual workshop for osteoporosis patients where you can good ideas about bone health, including how to protect the spine in daily life. (Beware of the pill-pushing rheumatologist!)

Tai chi, Nordic walking, taking Vitamin K2, and a number of other things will all help you.

By the way, I do not have osteoporosis, "only" osteopenia, but I've lost nearly two inches in height and I suppose it's from arthritis and age because I have no fractures. I'm 72.

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lightbody
lightbody
in reply to HeronNS

thanks so much! take good care.

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SheilB

Have you tried a tens machine for your back pain? It helped me when I was going through a painful time and was concerned about taking so many painkillers. I hope you find all the help you need on this wonderful forum.

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lightbody
lightbody
in reply to SheilB

Yes, I have one, up on a shelf in my closet. I moved here over a year ago, and I forgot I had it. I will be getting it out for use, thanks to you!

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Loz_B

My T score was the same as yours and i was only 35yrs of age. I had many different meds as they are only tested for 10yrs due to osteoporosis being mainly an age related disease. Im now 48yrs old and they are now trying me on a 6 monthly injection called denusomab. I have today had the injection as the bio phosphates are not working well enough (i broke my humerus whilst being on them for 9yrs and I had only stumbled and steadied myself on a wall lightly then snap and crunch) I wish beyond all wishes I could do without the meds due to the risk from side effects, however as i am so young. I already have spinal compression in T10 which along with the rest of the pain i have plus fibromyalgia pain. I cannot afford the luxury of just plodding on. The risks are just to high for me not to have the treatment. I wish you all well and can only say that the dr's will have assessed the pro's and cons of having or not having treatments. I am just praying this new one will slow down the disease and i hope to not suffer too adversely from the side effects. Only time will tell now. I just want more time from having to be in my wheelchair 24/7. Please always remember it's your future you have to think about too.

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lightbody

Dear Loz-B,

i am truly sorry you had osteoporosis at 35. i feel so much compassion for your situation, it sounds really challenging and hard. and you are so young. are in a wheelchair most of the time? i pray the new drug works for you, too. today i saw my GP again(and my Dexa results for the first time.) i am not -4.5, which i thought my other doctor told me. i am -4.0, which is bad enough, in the lumbar area L-1 L-2...i am high risk for fragility fracture. i am still learning about osteoporosis, and am open to the possibility of taking Fosamax, though i will not until i feel i must. i understand that it would be dangerous to fracture in the spine. my hips are 2.0...there's some relief with that number. my neck is osteopenia. even better.

thanks for your words. take good care.

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mushwee
mushwee
in reply to lightbody

Watch and Learn also stop milk and calcium both very bad for you as the casein in milk takes calcium from bones. Borax 1 tsp 5 once per a day for 5 days only Mon to Fri commence following Monday , living silica 1 tsp everyday with food

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Justme13

Hi Lightbody

2 years ago my scores were -3.7 in spine, -3 in femor neck, -1.8 in hip.

Although not -4.5, I refused drugs and used natural means - exercise, diet and supplements.

My recent dexa was -3 in spine, -2.4 in femor neck, and -1.3 in hip.

Down to oestopaenia in hip.

All the medics and ROS told me I couldn’t do it - impossible at my age - 62 then.

I proved them wrong.

I just want to give others hope that it is possible to go the natural route.

I also did this after going through treatment for stage 3c colon cancer.

Good luck.

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lightbody
lightbody
in reply to Justme13

Wow...great news. You just helped me make my decision. And you had colon cancer as well! This is so encouraging. Thank you. Yake good care!

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Madambouverie

Thank you for this information. What was your diet and what specific supplements do you use so I can compare what I've been doing. How often are you exercising? Because my result was -4 this time and -3.7 2 years ago my program was not adequate to give me a better result

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lightbody

My diet was lots of vegetables, only 3 legumes that work for the type "O" blood diet, which I am, and which is true for my body, a few fruits, no nuts or seeds, no grains or quinoa, including occasional rice for pleasure-it causes me so much inflammation, no corn, no coconut, no soy...actually my diet is limited due to serious histine responses and flu-like symptoms. But I do eat some meat, though I was not eating meat for about a year. I cannot eat some berries. So not much sugar unless I decide to "cheat" my well-being. Then I take Benadryl. As you can see, I have dietary challenges and am down to 98 pounds from about 114 pounds 2 years ago. I have always been very active, ballet into my 30's and was an aerobics instructor many years ago, was very active in yoga until about a year ago. Now using elliptical machine at home and other strengthening exercises, some of which can be done sitting. I am not a good dietary example as you can see!!!Take good care.

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TommyJohn

Yes I have -4.5 and -5 in various places. I too thought I was healthy until I fractured vertebrae several times. I started out on daily Forsteo injections for 2 years and am now into my 7th year of 6 monthly PROLIA injections.. I havent fractured since I started treatment and accept some mild side effects are far superior to spending time in bed and in pain without treatment

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mushwee
mushwee
in reply to TommyJohn

Watch and Learn also stop milk and calcium both very bad for you as the casein in milk takes calcium from bones. Borax 1 tsp 5 once per a day for 5 days only Mon to Fri commence following Monday , living silica 1 tsp everyday with food

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mushwee

Watch and Learn also stop milk and calcium both very bad for you as the casein in milk takes calcium from bones. Borax 1 tsp 5 once per a day for 5 days only Mon to Fri commence following Monday , living silica 1 tsp everyday with food

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Kaarina

Hi Mushwee

A very different posting here:

healthunlocked.com/boneheal...

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Met00

Welcome to this group Lightbody, and sorry to hear you're reeling from such a poor spine score. I hope the following information will reassure you that your osteoporosis may not be anything like as bad as you've been led to believe.

- First, you say you have scoliosis of the spine, in which case your spine score is unlikely to be correct: "In patients with scoliosis, measurement of BMD becomes invalid because patient can not be positioned straight" ncbi.nlm.nih.gov/pmc/articl... - Second, your spine score (4.0) is very different from your hip score (2.0), which would also suggest a strong probability of an error having been made. There's a school of thought within the medical profession that a difference of more than 1 standard deviation between hip and spine (4.0 - 2.0 is 2 standard deviations), is indicative of a likely error in measurement. You don't have osteoporosis in your hip (just osteopenia), so there's a chance you don't have it in your spine either.

- Third, you mention a broken toe. Depending on which toe you broke and how, that may not be considered a fragility fracture. Broken baby toes aren't fragility fractures, I'm not sure about other toes.

- Fourth, you mention disc degeneration, which in itself can account for your pain and loss of height

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lightbody

Thank you for your information. It is very helpful for future doctor appts coming up. My scoliosis is rated at 7 on the score chart, which is not considered severe, but it does cause discomfort. I read all the time of different scores in other parts of the body. This is quiet the journey. So much to learn. I appreciate your input. Take good care.

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Kaarina
Kaarina
in reply to lightbody

Same for me. At my last dexa scan in 2018 the report said Spinal DEXA was null due to spinal deformity, which came as no surprise to me. Hip T score of -0.2 and neck of femur T score of -0.8. I was told I no longer had osteoporosis...... I was taking strontium ranalate and I believe it may have accounted for the good scores as no allowance was made for this, I had only stopped taking it for around 4 months before the dexa. I am due to have another DEXA in April next year so will know more then as to what is happening with my bones ...... I get low back ache when vacuuming/gardening and stooping over the worktop for a length of time but soon goes when I stop doing what has caused the pain. I have had scoliosis many years and the curve has progressed in previous years. I am most thankful it is not worse regarding pain. I have always exercised so may be that has helped.

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