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LUPUS UK
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Bone density

Sorry I’m back again.

Got my results back from an X-ray I had done for pain in my foot. It showed bone thinning.

I am totally freaked out I’m only 24 😢 the dr wasn’t helpful at all with giving me advice etc. I’m going to ask my gp to refer me to a dietitian as I have a dairy allergy too which doesn’t help.

I’m on pred on the moment and hoping to switch to hydrocortisone by the end of this year.

I’m really worried and upset. I just keeping diagnosed with different things but seem to get no help or support from my appointments.

Thank you

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If you have "bone thinning" that shows on an x-ray I think you need a detailed discussion with your GP about an urgent referral to a specialist. And a dexascan assessment to see what the rest of your bone status is.

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I’m being referred for a dexascan but that’s all I have been told. I’m seeing my gp on Monday to discuss what my options are.

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That's good. To be honest - I doubt a GP is expert in the options for a young person, the effects of the medications are different.

The dairy allergy shouldn't be that much of a problem - cows milk is not actually the best source of calcium for humans! Is it lactose that is the problem? If so there are increasing amounts of lactose-free products coming onto the market. Have you never been referred to a dietician in the past if it is something else?

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I understand what you are saying as gp don’t specialise in this area. Even if my gp can’t help in this area some support would be nice.

Oh I didn’t know that! It’s not the lactose it’s the protein in milk I’m allergic to.

Nope I have never been referred to a dietitian however I would like to be referred now as I feel maybe changing my diet may help mange my condition a bit better

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Same here. Noticed that my blood test results are showing differently online than the actual results!, spoke to my GP and she said she’ll tell me if there is a problem, but there is, bone density, liver and blood to mention some of them. Fell and broke bones in my foot twice last year, GP not interested.

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Thank you for replying. Sorry to hear about your fall.

Even if I don’t get any help from my gp some support would be nice. I feel as though I have no one I talk to about my issues.

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I know how that feels, saw my GP re serious problems and told to make a double app as I have over run this one.

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I have dexa scans every 3 years now so you will need to have them regularly. I also take Vitamin D3 to help maintain bone density but I have developed some ostopenia despite them. The Dexa scans usually scan the large thigh bone and my results went back to the GP too. Try not to worry there are things and medication that will help if that is what it turns out to be.

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I take vitamin D supplements. They did blood tests at the clinic yesterday to check my Vit D levels.

I’m sorry to hear that.

Thank you for replying.

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Hi imzi,

Our factsheet, 'LUPUS: Bone Health & Osteoporosis' may be helpful reading for you. You can read and download it at lupusuk.org.uk/wp-content/u...

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My Doctor gave me ADCAL tablets to help replace the calcium. Here's something about them:

1. What Adcal-D3 is and what it is used for

Adcal-D3 contains calcium and vitamin D3 which are both essential for healthy bones and teeth.

Adcal-D3 provides extra calcium and vitamin D3 to your diet. It is therefore used in conditions where your body’s calcium and vitamin D levels need to be increased.

Adcal-D3 can be prescribed by doctors for certain bone conditions, for example, osteoporosis.

Studies show that taking calcium and vitamin D3 over a long time can prevent hip and other non-vertebral bone fractures in later life.

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Hi I n addition to info as suggested by Paul, there is a lot of information about bone health, diet etc. from the osteoporosis society, nos.org.uk .. They are happy to send info & discuss it with. It will help to get the dexi scan even as a baseline to have comparisons for future scans. It helps to know about it to get the best start to preventing further bone loss is food, exercise (weight bearing) swimming/walking), etc.

Sadly I sat in the sun to help with vit d and my bone loss, now I can't because of lupus so take pills now 😥.... Good luck... ML

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