Does anyone know anything about osteomalacia?

[KatyMac]

I have been diagnosed with Vitamin D deficiency

Is this a possibility? What are the symptoms?

[Eastpoint]

From what I've heard its very common, in Australia they are now selling a sun block which allows absorption of vitamin D.

[KatyMac]

Interesting

I'm just wondering about the symptoms really

[Pleasemrstweedie]

I'd say that with your other health problems, it's almost inevitable.

I wasn't aware that I had any specific symptoms, but I did feel better and sleep better once my levels were back where they should be.

[WayfaringStranger]

I was diagnosed with vitamin D deficiency many years ago and despite high doses of supplements, my levels have struggled to come up. Vit D deficiency is very common but ostemalacia less so. I was later diagnosed as I have the classic osteomalacia 'waddle'. I have other physical and mobility issues, so fall a lot. As my bones are so soft, I need x-rays when I fall to make sure I haven't fractured anything. X-rays have showed I have thinning bones (osteopenia) although they won't refer me for a DEXA scan because I am only in my twenties and apparently, there is 'no point' as it would only tell them what they already know.

[KatyMac]

Where do you have pain Wayfaring?

[KatyMac]

Bump in case anyone else has heard of it

[WayfaringStranger]

Everywhere! Hips, SI joints, hands, wrists, feet, ankles, knees, shoulders and jaw. Some of this is due to bony erosions from my autoimmune disease. The osteomalacia dx came about due to the pain in my mid section; hips, thigh pain and lower back. Scans did not show much inflammation or bone damage to explain my pain levels, which led them to look for another explanation and it resulted in osteomalacia being formally diagnosed. I must add that it didn't change my treatment at all but explained my pain.

[WayfaringStranger]

A blood test will rule it in or out btw and your GP can order it. I have so many bloods that I forgot, so I resorted to Dr Google.

Blood tests for the following can also help in making the diagnosis:

• Alkaline phosphatase, an enzyme produced by osteoblasts (bone-producing cells), is raised in osteomalacia.
  
• Parathyroid hormone, produced by the parathyroid gland, is raised as part of your body’s reaction to the condition.

[KatyMac]

I don't have much inflammation - but bone & joint pain

They have diagnosed Fibromyalgia - but I'm not convinced

Thanks for that information

I have pain in my feet - it feel like walking on glass or fire, pain in my legs ones, I've had hip & lower back pain for over 25 years, kness & ankles are going now along with my hands elbows & shoulders - even my ribs hurt

[WayfaringStranger]

The effects of low vitamin D are woefully under recognised. Having low levels can cause horrendous bone and joint pain that can take some months to resolve, even once vitamin D levels return to normal.

I'm aware that this is anecdotal but I know of a fair few people who were diagnosed with Fibromyalgia, then found to have very low vitamin D levels which explained their symptoms.

[KatyMac]

I'm taking a 3000 of Vit D & I have been since December - but I haven't felt much improvement yet - so it might not be that

But I think it's worth mentioning to the GP

[WayfaringStranger]

Are you taking calcium supplements? It took 6 months for my levels to return to normal on calcium and vit D.

[KatyMac]

There has been no suggestion of calcium being a problem

I also take zinc & B12 as I am deficient in them too

[WayfaringStranger]

Is also recommended to take 5000 per day to make a real difference. That is what I am prescribed.

[KatyMac]

Good job I am seeing the GP I guess

[BestIsWest]

wayfaring mentions parathyroid hormone above. I was just wondering if you have had your blood calcium levels measured? I have Primary Hyperparathyroidism - low vitamin D, high calcium, high parathyroid hormone and alkaline phosphatase. It is usually caused by a parathyroid gland going a bit overactive and can usually be treated by surgery. According to my Endocrinologist it is more common than people think but usually goes undetected.

It causes lots of problems, I have joint and bone issues, osteoporosis, GERD, brain fog, walk with a waddle etc. BUT it can usually be treated with surgery. Ask your GP to check your calcium and PTH.

[KatyMac]

I can only do so much in one appointment

So confused

[WayfaringStranger]

Well, if your calcium levels are not a concern and you've not had any stress fractures, osteomalacia is a lot less likely. Can you book double appts at your surgery?

[KatyMac]

As far as I can tell it hasn't been checked

I booked my appointment about 5 weeks ago, I can't alter it now

I'll mention the Osteomalacia as the pain seems to be in the right place & it also mentioned fatigue & tingling in 'extremities' which I definitely have

That seems sensible

[sincitylover]

What was your vit d level ? Mine was 39 about a year ago and my research showed that if it went under 30 there was a risk of osteomalacia - I had joint pains, hip pain and a waddling gait.

My gp refused to test (tested for arthritis instead) and so I got tested privately - which I couldn't really afford. I have been taking 6000 a day since - self prescribed. Would like to get tested again really.

When I took the test results to the gp she reluctantly px 800 per day with calcium.

Since taking the vit d my general sense of well being has improved considerably

Hope this helps

[KatyMac]

I was 30

[WayfaringStranger]

I'd be very surprised if a doctor tested for vitamin D and not calcium but stranger things have happened.

This is a really good website: www.vitamindcouncil.org/

[KatyMac]

I'll ask on Friday maybe they did & didn't tell me the results or maybe the results were normal

[KatyMac]

My calcium is apparently fine

& my B12 is being reduced