Newly diagnosed and feeling scared

[Debbietilbee]

Hi, I've recently had a dxa scan which has shown osteoporosis. I'm 53 with no real risk factors apart from being post menopause (4 years) and have taken omeprazole for quite a few years. Next week I'm having blood tests as the doctor wants to find out why I've developed osteo. I've read the list of tests that the hospital has asked the doctor to do and one of them is connected with myeloma. To say I'm petrified is an understatement. I had just taken it that I have developed osteo because of my age etc. And now it's possible myeloma. I was already panicking about having to take AA. And now this!

[Kaarina]

Hi Debbie,

We have all been there, with the panic after the OP diagnosis. You can always give the helplines a call and speak with a nurse if you feel that may help you.

Why did you hae the dexa in the first instance? You do not say you have fractured. Taking Omeprazole for a good few years can weaken the bones.

[Debbietilbee in reply to Kaarina]

I broke my wrist in April and as I'm over 50 I had a scan which showed osteoporosis. My doc says I shouldn't have osteoporosis at 53 and I'm thinking she thinks I have an underlying condition.

[HeronNS]

There has been something on the news recently saying that it seems PPIs are only beneficial for short term use (like a month or two) and should never be taken for the long term. Apparently long term use has some very serious side effects, not just bone thinning.

[HeronNS in reply to HeronNS]

cbc.ca/news/health/heartbur...

[Debbietilbee]

I broke my wrist in April. As over 50 they did a dexa scan.

[Kaarina in reply to Debbietilbee]

Ah, right. I expect you have had your vitamin D levels checked? Have you discussed with the doctor if you get enough calcium in your daily diet?

[Debbietilbee in reply to Kaarina]

All I've had so far is a phone call from the doctor following the letter from the hospital. The hospital letter outlined the tests they wanted the gp to do. She just kept saying that at 53 I shouldn't have it. The helpline was closed today so I couldn't call them and I'm beside myself with worry. My appt for the blood tests is next week.

[Kaarina in reply to Debbietilbee]

Debbie, anyone in your family have OP? Have you been underweight for any length of time when you were younger? As Heron says, you are not about to fall apart and I say you do not have to wrap yourself in cotton wool. Nothing can be done until you have had the tests and got the results. It makes sense for the doctor to run a few tests so things can be ruled out. Call the helplines tomorrow and have a chat with a nurse and carry on as normal until you see your doctor again and try not to worry. That will do you no good.

[Debbietilbee in reply to Kaarina]

Thanks Kaarina, trouble is I'm such a worrier and the Internet doesn't help. I don't think my mum had it, she passed away a few years ago, maybe she had it but never fractured so she'd never have known. Dad doesn't have it (well he's never had a fracture so never had a scan).

[Topcat56 in reply to Debbietilbee]

I was diagnosed with op about your age and my doctor just said some people get it don't know why no tests offered .Youve got a good gp don't worry think we're just unlucky who'd be a menopausal woman eh xx

[HeronNS]

The tests are being run to rule out everything possible. It doesn't mean they suspect you have any of the dire possible diagnoses, just an indication the doctor is doing due diligence, which is a good thing. But the most obvious reason for your bone thinning, from what we know from your post, is the long term use of omeprazole.

When I went to an osteoporosis program at my local hospital we were specifically told that breaking of smaller bones (like fingers, toes, wrists) is not considered a risk for future fracture as the smaller bones are vulnerable anyway. Although your DXA scan is cause for some concern it doesn't mean you are about to fall apart and there is heaps you can do to improve that result, hopefully even without medication. What are your t-scores?

[Debbietilbee in reply to HeronNS]

My T scores are Lumbar spine -2.7 (z score -1.7), Femoral neck -2.3 (z score -1.4) and total hip -1.2 (z score -0.6).

[HeronNS in reply to Debbietilbee]

You will be very pleased to know, then, that the line rather arbitrarily set by the WHO for diagnosis of osteoporosis is -2.5. Only one of your numbers is higher (well, actually lower, I suppose, as we're dealing with negative numbers). You should get advice from the experts on the help line, but if it were me I'd never consider medication with those numbers. My t-score was femoral neck -2 which I improved in one year to -1.6 without medication, using only diet, supplements and exercise. Only side effect - improved general health! I should add that for more than half the year between the two scans I was on a dose of prednisone considered harmful to bones, and yet I still managed to increase bone density.

[Karl-Heinz in reply to HeronNS]

Sorry to butt in HeronNS but I am really interested what diet, supplements and exercise you used to improve your t-score.

[HeronNS in reply to Karl-Heinz]

Hi Karl-Heinz. In brief, for a while I took a special bones formulation, calcium hydroxyapatite with micronutrients, extra Vitamin K2, and a few other things I've taken for a long time, and have just continued, complete B, complete tocopherol E and a couple of other things. I get extra magnesium from the occasional soak in a bath with Epsom salts. I took the hydroxyapatite as I've been on prednisone for polymyalgia, but now that my dose is so low I've reverted to the calcium citrate I took before. I eat lots of leafy greens, good vegetarian types of protein (nuts, seeds, eggs, cheese, fish) and very little liquid milk although I eat cheese, yoghurt, kefir. I also eat quite a lot of fermented vegetables of various kinds, and drink kombucha.

Exercise is mostly walking, Nordic walking, tai chi, yoga and physio exercises, and wearing a weighted walking vest.

[Lulet99 in reply to HeronNS]

Hi Heron, I was reading your post with interest. What supplements did you take? Can I ask your age? I am 38, I have severe osteoporosis, which is getting worse. I take otc calcium and vit D And a general multivitamin too.

[HeronNS in reply to Lulet99]

Lulet99, I am nearly twice your age, having just turned 70! Have you any idea why you have severe osteoporosis at your age?

One supplement you should consider adding is Vitamin K2 (not K1). authoritynutrition.com/vita...

And make sure your diet includes adequate amounts of all the other bone nutrients. You can get info about that from the internet. One good site is Better Bones, but you don't need to buy any supplements a site offers you. Just get the information and make sure your diet is good, and supplement only what you need. The Osteoporosis association can give you advice too.

If you can exercise weight bearing is best, so walking is better than swimming, for example.

[Donnacha]

Hi

I am a similar age to you with a Spine T-3 Z-1.9. There is no underlying reason for me to have osteoporosis, just one of those things. I discovered I had problems in my early 40s and felt very anxious. Why do you think that you have a melanoma?

[Debbietilbee in reply to Donnacha]

Hi Donnacha, not melanoma, it's myeloma I'm anxious about as that's one of the tests the doctor wants to do I never realised osteoporosis would cause so much anxiety and worry!

[Donnacha in reply to Debbietilbee]

We all empathise with your anxiety. I hope that your consultant is being very cautious with the tests. When do you get your results?

[Toplady]

Hi Debbie,

I can completely understand your fear and concern. I was diagnosed two yrs ago at 47 and premenopausal; to say I was terrified was an understatement but with support from family and the National Osteoporosis Society helpline, I calmed down. I have no family history and no other risk factors - my rheumy said that it was idiopathic, meaning it just happens and no one knows why!

Nearly three yrs later, I have been taking AA for the majority of the time and I had a Dexa scan on Monday to see if it has improved or not. I was told that my numbers were vey low and I was at high risk of fracturing again ( I had a spontaneous sacral fracture 3yrs ago) so medication was needed.

I'll let you know how I get on but please dont be too scared, ring the helpline and get some support. We all freak out at the beginning but you will adjust and carry on with life, honestly.

Take care ❤️

[Debbietilbee in reply to Toplady]

Hi Toplady,

Thank you for your comforting words. I had no idea how worrying and stressful a condition such as osteoporosis could be. I'm so fearful of doing anything at the moment - which I know isn't good for me or my bones! I have called the helpline and they are very supportive. Hope your scan results show an improvement. Please keep in touch. Xx

[netball7]

Hi Debbie - I am in the same situation as you but have been told to start my AA - I have had 1 dose and felt ok day 1 and 2 but went down hill from there so I am not taking it again until I have done some more research however, people do seem to take it and they are fine with it. I am going to put a post up in a minute about my concerns and hopefully someone will comment and maybe help my concerns from there. Good luck with whatever you decide to do.