my DEXA is -3.7 severe osteoporosis and I’m 48 - stsrtrd low dose Oestrogel .
Saw rheumatologist who was very rude actually and told me to stop googling.
He said I will do this yearly infusion. Reading horrific side effect. I’m very weak and fragile and started jumping everyday. will start some training .
I am in thyroid medication. T3 and t4 but my
Liver enzymes are high x
Please I’m petrified as can just about function now .
Please please can you let me know what experiences or what bloods I should ask for.
thank you 🙏
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Chouchou1234
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Personally I do not take medication - I tried AA for a few months and decided not for me.
I am very careful with my diet and what I eat, I supplement and use LIV vibration and weight bearing exercise. DEXA scans can have a quite considerable error margin. Was your score for spine?
Consider looking at REMS scan - not yet available on NHS but I found the assessment by Nick Birch far more helpful and informative than anything that came through NHS doctors.
Don’t be afraid but do be informed and aware that there are ways of restoring bone health other than these dangerous drugs; admittedly a less severe case than yours, I was able to improve all my DEXA scores so that now, two are “normal” and only one is “”osteopenia”(-1.5). This took four years. All the usual common wisdom applies: if estrogen-progesterone-testosterone supplements in a bio identical balance suitable for women; great nutrition including a range of proteins, vegetables, and lots of fiber. Weight bearing exercises daily and start gradually with small weights like half kg and work up slowly, long repetitions. Best done with a training specialist to avoid injury. Don’t forget the micronutrients and trace minerals needed such as Boron and manganese and K etc. I’ll send some links tomorrow and I know it is so upsetting—-but please relax and take charge of it—you can definitely improve your bone health without risky drugs. It won’t be fast though. Good luck.
I have written a couple of times about my experience with Reclast (intravenous zolendrate.)
I waffled and worried about doing the infusion for over a year - my lumbar # was -3.9 - I read so much about negative side effects. I finally had my first infusion two years ago. I had 0 side-effects. I had my second infusion last May. This time my hands got cramps (I have arthritis in my wrists) and I was very tired, but I felt completely back to normal the next day. I worried about jaw issues, but saw my dentist beforehand and because I had some TMJ pain, my doctor X-rayed my jaw, where they found arthritis, but no necrosis. My endocrinologist always does blood tests and checks calcium before each infusion. I also drink a lot of water before and after, ask for the infusion to be 30 minutes rather than 15 and I take a Tylenol. I honestly don’t know if it is helping my bones. My hip number improved after one year and I now have osteopenia there, rather than osteoporosis. My spine number was confusing and my doctor thinks the number is flawed, so I am interested to see what it is this time.
I walk regularly, do some PT to strengthen the muscles in my back and hips (not as regularly as I should 😬), and sometimes remember to wear my weighted vest when I walk. I take calcium and vitamin D. I try to be very mindful when I move as breaking a bone is what we all fear. I have only fallen once - several months ago- I landed on my back and side on concrete and I was fine. I feel like I do all I can and don’t worry much about it anymore. Everyone’s situation is different, so I can’t say my experience will be yours, but I did want to share that doing an infusion has not been a big deal to me. Good luck!
Have you been checked out for all possible causes of osteoporosis? Hyperparathyroidism, an overactive thyroid (not the same as the parathyroid gland) be8ng coeliac, being underweight, family history of OP there are lots of possible causes.
Knowledge is power and you need to know as much as you can about your condition so read as much as you can. There are a lot of good books out there, lots of research papers online too.
Check out the ROS website that someone else pointed you towards, there is a lot of information on there and you can use their helpline too. I suspect (but am not certain) that they are pro osteoporosis drugs
I started alendronic acid and stopped after four months of feeling really dreadful but that was just me - I have several friends who have annual infusions or take a weekly tablet who seem to have no problems.
I think you will find ‘medical’ people are all in favour of OP drugs my rheumatologist phones me up at 8.00 at night to try and persuade me to keep taking the alendronic and I know two physiotherapists who are both in favour of OP meds and are shocked that I stopped.
If you can get to one of the locations and can afford it it would be worth go8ng to see Dr Nick for an OsteoScan (Echo Light in the US) he is a former spinal consultant, he is very calm and positive and he will not make you feel silly or be rude to you. osteoscanuk.com
I would just say if anyone offers you Prolia / Denusomab think very carefully as once you have had more than one injection you must go on to a relay drug which is usually alendronic acid to prevent rebound fractures. You can’t even be late in getting your next injection
Hello. I would definitely recommend checking your parathyroid levels ( just a blood test). They are nothing to do with the thyroid at all and can be (as in my case) the cause of osteoporosis.
I was diagnosed after fracturing my pelvis, and did my own research, because I do not want to take medication that was almost thrust at me. I had never heard of the parathyroid glands.
So I would get that checked… it’s not always the case, of course, but it’s worth eliminating that before you move on.
Knowledge is absolutely a must and I think as long as you’re careful where you research it it’s not a bad thing.
CTx is important to get checked. It’s a marker of bone loss (resorption). If you have high CTx, I would seriously consider going on a bone drug if I were you. I wouldn’t want to wait until the next DXA and realize I lost a lot more bone. Instead of Zoledronate though, with your T-scores, I would want an anabolic, like teriparatide or evenity.
What do suggest these Blood tests what about urine?
Blood and urine tests
Bone alkaline phosphatase
(CTX) cross-linking telopeptide of type I collagen (blood test)
Procollagen type I N propeptide (PINP)
(NTX) cross linking telopeptide of type I collagen (urine test)?
What else?
I asked him about evenity and he was rude said it’s not for me. That you can only be on it for a year. Then go back to the other stuff .
He also said there’s a lot of heart risk and bad side effects from evenity . I have no faith in him he’s a locum who got so mad at me as I had so many questions - he told me ‘stop googling ‘ and get a life
2. What about boron and what levels?
Problem is my alp bone is high max is 71 or something and I’m 140 and I told that and he said that’s not high. I’m on t3 and t4 and worried it’s speeding things up more but my blood tests for t3 were 5.8 to 6.2 at last test (3.1 to 6.8)
Xxx
Sorry if rambling.
I did some jumping up and Down today and boy the bones are hurting x
What a shocking attitude from that rheumatologist! It's your body and you have every right to ask questions! It sounds like he's trying to scare you by saying you have severe osteoporosis. In fact the definition of severe osteoporosis is when you've had one or more fragility fractures as well as a t-score in the osteoporosis range. If you haven't fractured, then it isn't classed as severe, partly because t-scores alone don't tell you your fracture risk. For that, you should have a FRAX fracture risk score, which is based on a number of risk factors, your neck of femur t-score being just one of them. Would you be willing to share your t-scores for your neck of femur, total hip and average spine, plus your FRAX score (eg 10% risk of fracture in the next 10 years)?
The rheumatologist is correct about Evenity, as that's for post-menopausal women who've had at least one fracture, or where other medication hasn't been effective. However, you mentioned that you've started Oestrogel, which in itself may help with your bone density. HRT is recognised as being beneficial to the bones, although you may have to work up to a higher dose to get the bone benefits. I'm interested that you're only on oestrogen - have you had a total hysterectomy? I may be mistaken, but it was my understanding that if you still have your womb, it's necessary to take progestogen as well.
Some supplements are definitely worth considering because it's difficult to get enough in diet. The main ones are Vitamin D, magnesium and K2-MK7 (not the same as K1). Boron is another that some of us take, usually 3 or 6 mg.
For more information, you might find it helpful to join the FB group Osteoporosis UK - friendly support and natural options.
First, I'm so sorry about your experience with the rheumatologist. What a tool.
I'm definitely not in your same situation...I'm older, heavier, have thyroid issues (Hashimotos) but sounds like they're different from yours...but my osteoporosis really IS severe (I got diagnosed when my back pain became chronic--didn't know for sure that I had fractures but I suspected; now I do know.)
What I can tell you from my one year of experience is that live doctors are just as bad as google: you can find any answer you want if you search enough and ask correctly, and/or they'll all disagree. But the last one I saw (who thinks Evenity is not the right choice for me, disagreeing with the endocrinologist,) does think I should be on Reclast. I was more willing to try Evenity than Reclast--I too am FREAKED OUT by those pictures of atypical femur fractures and MY sense, from both my in person endocrinologist and an endo I saw interviewed on YouTube is that that's not an irrational fear: THEY just have it stuck in their heads that the benefits outweigh that risk. I'm not sure why, because the same doctor who said Evenity would not be his choice for me also said his pet peeve is when doctors say "Reclast reduces fracture risk by 50%" (which is what the endocrinologist told me--insurance denied Evenity so his next choice was Reclast. The new doctor said actual fracture risk refuction was like 1-2%.
So I'm doing my own calculations, right? I've already got at least 4 vertebral fractures, so that ship has sailed. (True, don't want MORE, but...whether Reclast could prevent them is...doubtful.) When I mentioned this to my first PCP he said, "It's the HIP we're worried about."
Okay, let's discuss the hip then. For all I know, with MY poor bones, I've already had a hip fracture. They're sneaky buggers too, it turns out. My grandma had multiple stress fractures in her hips. It hurt, no question, but it never stopped her from walking, she never got treatment (other than cortisone shots occasionally, for pain,) and she lived to 104.
Or, not all hip fractures are devastating.
But you know what IS devastating? The atypical femur fracture.
And the longer you're on the drugs, the greater that risk becomes.
I'm barely 63. If they have their way, I'm on these drugs for decades.
Meanwhile, though I understand NOW that extreme t-scores are widely variable and...seems to me THAT means a DEXA is useless for those of us in the "polar regions"...I did show improvement in my hip scores (also not great but presumably not as prone to error? I don't know!) over the last year doing every natural intervention I could afford to do. T-scores aside, irrelevant anyway, I believe I absolutely have reduced my fracture risk by strengthening the muscles in my back and my hips. THAT'S what's either going to save or kill me: sarcopenia, loss of muscle. And THIS is within our control, a win-win.
Absolutely it's hard, especially if you are already in pain, but there's always something you can do. Maybe this would even help with the atypical femur fracture...but that one seems like the devil, to me...have to do more research.
All to say, my t-score for my spine clocked in at -3.9 this year (-4.6 last year,) still very severe--but I'm still going to lobby for one more year on the natural route. If I show improvement next year...maybe it IS a trend. If not, maybe Reclast will seem worth it.
At your age, you should be immediately tested for a parathyroid tumor...this is NOT a thyroid tumor. I had one and it went missed for years and years, now age 62, my spine is destroyed, a cascade of fractures from T6-L3. Go to parathyroid.com it's the Norman Parathyroid Center in Tampa FL, great info. I had several doctors ignore my complaints, refuse to listen, tell me I was too stressed, all the basic "you are a worthless female" type complaints....and I worked in healthcare! Taking any type of OP medicine will not work if you have a parathyroid tumor. Watching your calcium is a mistake as well, you could have a stroke. Blood calcium for anyone 30> in age should never be over 10.0. The lab ranges are not correct, they include children, that is a bad error. They are not cancerous, but years later, I have had around 15 surgeries, wrists/hands, nerve transfers, 4 fusions, 10+ spinal fractures. If some doctor is pushing you and being a jerk, male/female, find a new doctor. Grumpy mean-spirited doctors need to find a new place in the world.
I diagnosed myself, referred myself to Dr Norman's Team, had it removed, learned as much as I could from them. I did have a background in healthcare for 30+ years, and had collected all my medical records, labs, testing for 20 years. I put all my lab results on a spreadsheet and tracked the patterns of PTH, calcium, Vit D. The calcium is a tricky one, and many "doctors" will tell you that it takes levels above 11 to have a parathyroid tumor. No. Not true at all, in fact, mine only once went to 10.4, stayed around 10.3, but, very important, it bounced around monthly, I started running my own labs, online companies are great for this. Mine went from high 9s, to 10.3 for a year. BUT...the PTH was steadily climbing the entire time, except once when it went down by 30 for no apparent reason, then went above 100. Getting a DEXA at age 50, finding out I had severe OP was stunning. I had realized years before that doctors were failing their patients...too many women are treated as if our symptoms don't matter, give us a depression pill and send us on our way. Tell us it's stress, and your symptoms are irrelevant. We are not money-makers to doctors when we have these conditions. During this time I was tired, brainfog massively, and my job did not allow for brainfog! What doctors don't understand is how many of these may be out there...they cause strokes and heart attacks too. "Waiting" or "treating" high calcium is code for they don't know what to do. There is not a great or even good test to see a parathyroid tumor. There is a Sestamibi Scan, but it's 50-50 on accuracy. The Norman Center doesn't use it until the morning of surgery, to get an idea where it may be located. Mine was easily flagged. But mostly, we have to be "the squeaky wheel" when we know something is wrong...we know our body.
Hello, It is useful to be informed and in that respect only look at well respected websites. Individuals will have different experiences and views.
I am on zolendronic infusions once a year. You need to take a supplement of calcium and vitamin D when you are on them.
Some people have had side effects, but they are rare, and it is a matter of you weighing up what the benefits of taking medication against not taking medication. (I couldn't tolerate the oral alendronic tablets). I had three years on the infusion and then two years off followed by a DEXA scan before restarting.
My reasons for wanting to have the infusions are 1) my mum had osteoporosis and lost height and it effected her daily living. 2) I take a limited diet because of allergies to quite a few foods 3) I have osteoporosis and want to try to minimise its effects on my life 4) I can't exercise as much because I have ME and some other health conditions.
I do some of the bone strengthening exercises and balance exercises based on advice from trained therapist. Margaret Martin has some good ones on YouTube. They are quite gentle ones. I started doing heel drops and found that if I did them hard my back hurt where I have discs problems. You need to build up exercises gently if you aren't fit.
Aim to keep your functioning at your current level and then build it up. It is possible to improve results with care.
Certainly unhelpful for the rheumatoligist to be rude to you. Do you have someone to go with you next time to speak up for you if you need it and ask questions if needed to explain.
Asking to see the lead consultant as the guy I saw was a locum. I can’t breathe today with anxiety from it as not digesting food at all . Body weight has not dropped but definitely muscle mass.
Fortibone ? I take hunter and gather collagen peptides - is there a better one? Other supplements ?
After a great deal of research, I declined any bone density Rx.
I chose to uses a vibration plate daily, switching to Algecal mineral suppliment. Plus osteophin from Standard Process fo the max time of 3 months. An expensive or new vibration plate is not necessary. I bought a mid-level one. My only recommendation; if you have any balance issues, get one with a railing. Start low level of vibration then over months begin to raise the level. My bone density is now mid to low level of normal bone density. Yea! I continue to improve my diet, though there is little room left for improvement as this is been an on-going for 20 yrs now. Exercise is good. I often go to work with weights on my ankles as I walk quite a bit on the job.
I am not sure what the BEST vibration plate is. I looked at the ones specified for bone density. It sounds like the con often seen in medical devices. this being the difference between a medical LED device for people and the same device labeled for different mammals. Hog Wash, just had a different manual and the same everything else.
I bought a LifePro Rumblex plus 4D vibration plate which might be overkill. Amazon has on one on sale now for $200 used? I paid about $400 new. From my studies on the needs to build bone density, the plate needs to have a low amplitude for osteoporosis. This is a smaller distance between the top & bottom of the vibration wave. Mine is capable with many settings. I had a knee xray series due to a slip on ice. The Doc commented on my great bone density! If you have any wobbles or dizziness, get one with bars to hold on to. I exercise on it now as well at a much higher everything.
Standard Process has an amazing bone building supplement called Osteopin. I took it for 3 months, be sure to take K2 as it is the traffic cop that directs minerals to you bones and away from vessels and organs. After this I am now taking Algecal daily. Best wishes.
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