Newly diagnosed are my scores bad ?

[Simplyred57]

Hi after getting myself better with the help of the Thyroid forum and now feeling good on my Thyroid meds (T4 &T3) my endocrinologist requested a DEXA scan last one done in 2020 and the results came in that I have gone from osteopenia to osteoporosis in my spine.

My calcium and vitamin D have always been good I supplement with VitD3 & K2 so I’m devastated ( I did refuse Adcal as my results were good in the range when I was told I had osteopenia ) and now prescribed Alendronate 70mg per week and no side effects so far on week 4.

My results are attached I know I have a lot of learn , but as a starting point do they look bad?

Any advice would be gratefully accepted ☺️

[CinnamonRose]

Join the club!! It's a shock isn't it. It does take quite a while to sink in, it's a lot to process. My scores are nowhere as high/low as yours are and yet I've fractured 7 vertebrae in total. Have you had any fractures?

This forum is great and hopefully someone who's more knowledgeable than I am will chip in re your scores

I must admit I've scoured the internet looking for info and a cure but there doesn't seem to be a magic pill - like a lot of things in life!!

[Simplyred57 in reply to CinnamonRose]

Hi CinnamonRose thank you so much for your response, no fractures thank goodness it was just picked up on a routine DEXA scan as part of my thyroid treatment, my TSH is always suppressed for me to feel well, but they say it can lead to osteoporosis ( no real proof on that ) My endocrinologist ordered the scan .

I had a hysterectomy at 42 I’m now 65 and very limited HRT only took it for a few years as nothing seemed to agree with me , and not as much choice back then and nobody stressed the importance of the bone health side of taking it . I spoke to my GP about HRT recently as an option , but due to my sister having breast cancer, she said the risks out weigh the benefits for me sadly.

I’m going to ring one of the nurses recommended on here to have a chat as I have so many questions, I had to do lots of research on thyroid and joined the health unlocked forum to get better , thankfully the amazing people on there helped me so much, hopefully I will get some good advice on here too 🤞🏻

[CinnamonRose in reply to Simplyred57]

It is tough, the ROS nurses are very helpful, there's also a UK only Facebook group that is useful that you could join, similar to here, the ROS is possibly more active on Facebook.As my consultant told me, try not and live in fear, it's easier said than done!!

[Verauk in reply to Simplyred57]

Hello Simplered57, your case is very similar to mine( hysterectomy at 39, no HRT, DEXA scores )I'm 68 now. I also have Risedronate( AA) for 9 months now and no side effects. No fractures so far despite I have had two falls on the street last year. I'm reforcing my strenght exercises ( I used only to walk and swim before) 4x a week 30 min of strengh exercices+ 8 km a day walking . Eating more protein also( but not as much they recomment, only 0,9 g/ kg of weight . I didnt understand the huge % of variations ( aprox the same range of mine)at Scores.... maybe there is a mistake? My Doc didnt explained. I will follow you to exchange more experiences.

[Simplyred57 in reply to Verauk]

Hi Verauk , yes our stories do sound very similar , Im still getting my head around everything, but I’ve just spoken to the ROS nurse and she was very helpful and went through my scores with me and answered a lot of my concerns did you speak to one ? she said my spine score is slightly over average as she said most people loose 1-2 % per year and over 5 years mine is above that so I’m booked to see my GP to have a further chat about everything , sounds like your doing your very best with your exercise and diet , I have a lot to learn and improve on I think on this journey- stay strong 😊

[Verauk in reply to Simplyred57]

Thanks for your reply. I will try to speak with a nurse. Best wishes!

[corcho]

Welcome to the forum. I think ongoing thyroid problems can contribute to bone loss as well as being post menopausal with no hrt. I had (have) Graves disease since the mid 1990's but it went undiagnosed for at least 5 years. I was made to feel as if the symptoms were all in my head... lots of anxiety and feelings of panic, very unlike me. My profile is typical of a person with osteoporosis. Genetic tendency from my mother, no hrt, history of thyroid and a small build. Considering that little list, I feel I've got off lightly so far with osteopenia in my spine and hips are ok. I'm determined to keep my life going as normal for as long as possible. I continue to be active, even running, albeit less now and on softer surfaces. There are days when fear starts to creep in and I imagine every twinge is the start of a fracture, but by and large my life is good.Keeping informed (from reliable sources) keeping as active within your own safe limits, correct diet & nutrition and medication if you need it helps to tackle this from every angle available. Reach out to ROS for reliable advice and emotional support here on the forum. All the best. x

[Simplyred57 in reply to corcho]

Hi corcho thank you for you reply sounds a lot like me , Graves is a horrible disease , I had it back in the late 90’s and had RAI the worse decision I wish I’d had the operation and it took years to get anywhere near better and of being under medicated , that coupled with a hysterectomy and all the effects of that really took its toll and miraculously I’m still married😂

I have not been referred to anyone just passed from my endocrinologist to my GP is that the correct procedure?

You sound so positive and I will definitely make that call, I hope you continue to keep well take care .

[corcho in reply to Simplyred57]

Hi again Simply red. My overactive thyroid was initially treated with drugs (quite toxic I believe) but within two years it went overactive again. I also had radioiodine and for me it's been very successful. My thyroid did go under active but apparently that's easier to treat which is why you're eventually passed back to the GP. Regular blood tests are vital, at least yearly to maintain the levels. I must admit that when I went into the menopause, it was a walk in the park after Graves. 😀 I insisted on a bone density test just after the menopause and everything was normal at that time. I'm almost 69 now, so my level of osteopenia is probably part ageing, no hrt and genetics. It's hard to aportion blame to any one thing, we're all individual with different physical makeup.This forum is a great space for helping us feel less isolated and to be able to share our different experiences.

[Lopera]

Unfortunately it's not just a numbers game so your question about your DEXA results is impossible to answer. Like CinnamonRose, I have spinal fractures but my score is 'better' than yours!

You are already taking supplements and have started on Alendronate so the only thing I would add is that weight bearing exercise is recommended. There is some advice on the ROS site and also lots on youtube.

I wish you all the best going forward.

[Simplyred57 in reply to Lopera]

Thank you Lopera I think I really need to understand the numbers that’s just the way I am , how do you know you have spinal fractures is that through scans ?

I used to run but sacroiliac problems put an end to that, I’ve had a few guided steroid injections, now they’re looking at nerve ablation in my right sacroiliac joint , I told him at my last appointment of my diagnosis.

I try to power walk but don’t do any other weight bearing exercise , thank you for your good wishes .

I will have a look at your suggestions .

[Lopera in reply to Simplyred57]

I discovered my fractures after a private MRI scan. My GP had refused to refer me because I didn't have any numbness going down my legs.

[Simplyred57 in reply to Lopera]

Thank you, I’m going to speak to one of the nurses and then book an appointment with my GP and see where that leads me🤞🏻

[Missus835 in reply to Lopera]

That's sad. I've got 10 spinal fractures and never had leg numbness. Sounds like your GP is much like mine: they know nothing about PMR/GCA/Osteoporosis, etc. It was actually a rheumatologist who missed the first two fractures which showed up in a CT-Scan, which report she had not read. I ended up at the ER in so much pain. The ER doc found the report in the system. Those were the first two of 10 fractures. I had them vertebroplastied, which caused the vertebrae on either side to fracture. The remaining fractures were found by regular spine xrays. I now take annual zoledronic acid infusions, but have another xray scheduled because osteo specialist thinks I may have another fracture due to severe back pain. Also awaiting a bone scan to determine if I have atypical femoral fracture in my left femur. The gift that keeps on giving. All the best Lopera.

[CinnamonRose in reply to Missus835]

That's interesting about the verteoplasty, they were going to do it to my fractures but the MRI showed that it was too high a risk of it leaking into my spinal cord, maybe it's just a well I couldn't have it done They're now suggesting Radiofrequency Ablation but nobody here has come back to say they've actually had it done 🤷🏽

[Missus835 in reply to CinnamonRose]

I haven't heard of it. There is a chance that mine leaked because there's something showing on my kidney that CTScan states could be cement. Damned if you do...damned if you don't. 🙄

[CinnamonRose in reply to Missus835]

Quite!! Trouble is, when in constant pain you get so desperate you'll do anything to try and get rid of it!!!

[CinnamonRose in reply to Missus835]

I notice you're from Canada, were you warned about the risk of the vertebroplasty leaking? Do you have to find your own consultant and pay like the US?

Interested to hear about other countries health systems, we complain about the NHS , it's a national pastime, a bit like us moaning about the weather!!!

But to be honest they've treated me well and have been extremely helpful, it just happens that there's not a lot that they can do about Osteoporosis

They had told me about the risk of leakage before I had the MRI but having seen the MRI results they said no, it was too high a risk.

[Missus835 in reply to CinnamonRose]

Yes. I was warned about the rare possibility of vertebroplasties leaking. I'm a rare bird. Lol. These procedures and the specialist were covered by our healthcare system. He is well known inthe Interventional radiology community here in Nova Scotia. The wait was quite short but probably because I was referred from the ER.

[Simplyred57 in reply to CinnamonRose]

Hi how strange I’m due to have a guided steroid injection in my right sacroiliac joint early April if that doesn’t work ( the 1st one didn’t ) he’s said nerve ablation is the next step the same thing I think 🤔

[Missus835 in reply to Simplyred57]

Yes. Im not due for my second steroid injection in my hip for bursitis, yet , but the first one lasted about a month. So perhaps 2nd one tomorrow. While it was working, just that month of relief was wonderful. I'm not sure of the bursitis, but GP refuses to believe PMR flare.

[CinnamonRose in reply to Simplyred57]

Sounds like it, I had the GSI in December, it helped but only lasted a month, the consultant said that they'd given it to me to see if the Radiofrequency Ablation would work, but I asked on here if anyone has had it, I had one reply saying they were waiting for the appointment, but nobody said they'd actually had it🤷🏽

[Simplyred57 in reply to CinnamonRose]

Yes at my last consultation he said if we get the right spot he will do the nerve ablation is, it been 4 years of constant pain an it wears me down sometimes 😞

[corcho in reply to Simplyred57]

I hope you don't mind me adding here that if you can get to see a physiotherapist, they're excellent for tailoring a specific programme to get you started with safe exercise. I have an excellent one who has really helped me to gain confidence in returning to exercise & how to specifically target bone maintenance.

[Simplyred57 in reply to corcho]

Thank you I used a physio a while ago when I had 2 frozen shoulders so maybe have a word with her , I definitely need some guidance on what I can do exercise wise, I can’t pick up my 4 year old granddaughter and it breaks my heart 💓 she has autism and doesn’t really understand but I can’t risk it .

[Meuslialways]

Yes it is a shock when diagnosed. I thought about 10 years ago I had pulled a muscle in my upper back. After 3 weeks when no better went to my lovely Physiotherapist.. when I told him about how it had happened when stiring a pan of soup, would you believe, he immediately said he wasnt going to touch me as he was sure I had Osteoporosis. Contacted a Osteoporosis Consultant who gave me a DEXA scan to confirm Osteoporosis and fractured my spine.....all through stirring a pan of soup. My fracture was filled with bone cement and all was well for 6 years when I started with horrendous back ache to find my spine was crumbling.I had a hysterectomy at age 29 and on HRT for 15 years in my 50's but I dont think I gained anything from it. I now have loads of metalwork holding up 2/3rds of my spine but my pain is still horrendous.

I have Stenosis and hobble around the house but out of doors have a disability scooter.

I think positive, keep smiling, dont complain to anyone except to my wonderful husband sometimes!!

We go abroad on holidays even on long haul and fabulous cruises all over the world.

DON'T let Osteoporosis win and dont give into it, thetecarexakeays ways round the dreaded disease.

Good luck and try to find a Consultant that specialises in Osteoporosis. Life can still be good if you allow it to be!

Thinking of you.

[Graceissufficient in reply to Meuslialways]

wonderful commeny meusli

[Simplyred57 in reply to Meuslialways]

Wow Meuslialways you sound so upbeat despite all your limitations, thank you for your positive response, yes holidays are our thing and I’m not going to let it stop me from doing that, I just need to know how bad it is and I’m a little concerned I’m only being treated by my GP should I push for a referral to a consultant in osteoporosis?

I had to push for a referral for my thyroid and eventually found a consultant in my area from thyroid uk and paid to see him privately, he then put me on his NHS list, is this the way to go with this do you think ?

Will try to keep smiling 😊

[Meuslialways in reply to Simplyred57]

Hi, yes if you can afford a private consultation, go for it. That's what I did and after some more tests by him he then started seeing me via NHS. At nearly 81 I will NOT let this horrible disease take over my life.

Good luck.

[Simplyred57 in reply to Meuslialways]

Thank you ☺️

[Lopera in reply to Meuslialways]

You are an inspiration and let's give a cheer to wonderful husbands, those of us lucky enough to have one!

[Simplyred57 in reply to Lopera]

I second that my husband deserves a massive medal 🥇

[CinnamonRose in reply to Simplyred57]

Yes, I third that! 😉

[Missus835 in reply to Meuslialways]

It sure doesn't take much to fracture us does it! If you look at a bone the wrong way, it fractures. I do find the back muscle pain over the top most days, but we keep on trucking. You're quite an inspiration M. Thank you.

[CinnamonRose in reply to Meuslialways]

Wow good on you, I try and stay positive, it probably doesn't seem like it on here as it's a safe place to vent!! How do you manage to stay so positive or do you have bad days too?

[Cappuccinobaby]

What is your calcium and vit d levels?

[Simplyred57 in reply to Cappuccinobaby]

Hi attached are my results from December, my Vit D was 98.2 ( 50-99999.0) it has been higher before, I do supplement all year round .

B&w

[Cappuccinobaby]

Do you take any meds that could be keeping your calcium down such as PPI's?

[Simplyred57 in reply to Cappuccinobaby]

No my GP said my calcium was good though is it not ok ? I refused the adcal when it was offered .

[Cappuccinobaby]

I was just thinking that hyperPARAthyroidism is a known cause of osteoporosis as it strips the bones of calcium. Just because your calcium is ok doesnt mean you dont have it. Insist your GP rule it out as a possible cause by testing vit d calcium and parathyroid hormone levels from the same blood draw then you know it can be ruled out

[Simplyred57 in reply to Cappuccinobaby]

Thank I will I’m going to make an appointment to see him once I’ve spoken to the ROS nurse.

[Cappuccinobaby]

Be polite but insistant.....

[Simplyred57 in reply to Cappuccinobaby]

Hi I’ve just spoken tho the ROS nurse and she was very helpful and also suggested parathyroid test so I’m booked to see my GP in a couple of weeks and also to discuss calcium , I’ve a lot of reading to do I think 🤔

[Cappuccinobaby]

Have a look at this. Im sure it might be helpful

google.com/url?sa=t&source=...

[Simplyred57 in reply to Cappuccinobaby]

Thank you so much ☺️