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Steroid treatment for Graves Ophthalmology

5 years ago•9 Replies

Hi, forget the doctors, I always come to the experts!

I was diagnosed with Thyroid Eye Disease a few months ago, and a recent MRI shows deterioration in my orbit, which requires a three month weekly steroid intravenous treatment, the consequences of 'not' having it would be eventual surgery or indeed loss of sight.

I was diagnosed with osteoporosis a few years and have kept my bones in check naturally. As many of you know, steroids can lead to bone loss, but the medics tell me that they add a bone drug to stop that happening, just what I've resisted all these years!

The nurse could only remember the bone drug begins with an R (!). I will obviously be meeting with a consultant beforehand, but I wonder if any of you have encountered this, and what your feelings are. The course lasts for three months so it is not long term thank goodness.

In advance, thank you for your thoughts. Lynn

PS... my last bone scan was in 2018 when my worst T-score was my femur neck and it wa -2.4, my other scores averaged -1.6.

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Lynndeb

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Fruitandnutcase5 years ago

Might be worth posting on the ThyroidUK website. Quite a few people on there have had experience with Graves and Thyroid Eye Disease so maybe someone on there will know. It’s a really good friendly group.

On the other hand someone on here might know too.

Lynndeb• in reply toFruitandnutcase5 years ago

Thank you, I didn't think of that, although I have posted it on the HU thyroid. I'll nip over to the ThyroidUK website too

Fruitandnutcase• in reply toLynndeb5 years ago

I’ll be absolutely amazed if your u don’t get an answer from ThyroidUK.

Lynndeb• in reply toFruitandnutcase5 years ago

Brain fog, or was I being really thick! I'm sorry, I should have realised that ThyroidUK is HealthUnlocked, although the website is very useful too... my brain is scrambled!

Fruitandnutcase• in reply toLynndeb5 years ago

😊 that’s brain fog for you - although I should have said it was on Healthunlocked in case you didn’t know about it.

knitwitty5 years ago

Are these your first DEXA results or have you seen a deterioration in bone density in recent years?

Have you had any more recent results, because you may not be actively losing bone density?

If those are your worst T score they fall outside the osteoporotic range and in the osteopenia range so you may be able to increase your bone density without having to take any medication, exercise and supplements might do the trick.

Good luck

Lynndeb• in reply toknitwitty5 years ago

Hi knitwitty, Those are my most recent dexa resulta, as of two years ago. They have improved slightly, other than the femur neck, from the past 4 years. I feel quite confident with my bone health because i had a fall almost two years ago when I was too busy looking up to see a bollard, which I crashed over, catching myself with my wrist and shin, no broken bones, very sore, but by the next day absolutely fine. I'm only small and I have read that it makes it harder to get an honest dexa result when you're small boned...

One of the effects steroids have is that it can lower bone density, so that's why they put you on 'bone saving' drugs whilst giving you the steroids. It's only for 3 months, so maybe it'll be ok, I just hate all osteoporosis drugs. I get a fair amount of exercise, and I supplement to support my bones, including K2MK7 and I try and get my calcium through my food... My main problem is that I've had and have a lot of stress, which has a negative effect on bone health. I do mediate.

I've just glanced through some of your history re your dexa. My GP tried very hard to get me to take Bisphosphonates, telling she's read of a very good recent study about their efficacy, and I asked her who paid for the study, and she said "well you have a point." Personally I think it's very wise to take a natural approach to bone health for as long as possible.

I have to make my decision in a couple of weeks and so I'll keep on researching and weigh up the pros and cons, but I really do appreciate your input, and good luck to you with your thyroid and bone health, and most of all with the NHS!

knitwitty• in reply toLynndeb5 years ago

Thank you , very glad to hear that you're doing well and having a fall with no broken bones is always a good sign.

I recently started supplementing with boron as I read that is very good for bone health. I also take magnesium along with my D3 and K2.

I too am quite small, so I agree that DEXA scans can sometimes be a bit misleading.

My mum was diagnosed with "osteoporosis" about 30 years ago and advised to take bisphosphonates, they gave her real problems with her oesophagus and she had to stop taking them only a month or so after starting them.

She never took anything else for her "osteoporosis" . She's now 86 and has never broken any bones to date.

I wasn't such a bolshy so and so in those days or I may have queried her diagnosis.

I hope your steroid treatment for your TED is successful, both this forum and the thyroid forum are a great resource when you need a bit of advice or just someone to talk things over with.

Good luck and take care.

Lynndeb• in reply toknitwitty5 years ago

Bolshy, I love that! Yes boron is very good for bones, but not if you have chronic kidney disease, which i have. 86 and no broken bones, well done mum!

Thank you for your good wishes, take care