Recently diagnosed with Vitamin D deficiency

You can help the BS problem by being VERY  good about carbs. I have a few friends who are diabetic and they do admit it is harder - but not impossible. But being pain-free and able to exercise a bit more is also a help.

All the best.

Well, this is interesting, because your rheumatologist (and other rheumatologists, who knows?) is suggesting that a diagnosis of osteomalacia can only be made on the basis of low serum calcium. Everything I have been able to discover says it is made on clinical presentation - aching bones and joints, low trauma fractures, tenderness of ribcage and tenderness on mechanical compression, in conjunction with low vitamin D levels - all other conditions having been considered and rejected. 

I do/did have low serum calcium, but my doctor wouldn't even use the term osteomalacia until I cornered him. 

I'm going to nose around the internetz a bit. I'll let you know if I come up with anything regarding diagnostic criteria. 

Jaybelle and k11990

Here are a couple that don't need moderation as they are on this forum: 

https://patient.info/doctor/vitamin-d-deficiency-including-osteomalacia-and-rickets-pro

https://patient.info/health/vitamin-d-deficiency-including-osteomalacia-and-rickets-leaflet

The first is for professionals and says 

"Hypocalcaemia, hypomagnesaemia and hypophosphataemia may be present, depending on the severity and chronicity of the disease and the patient's dietary calcium intake."

"Elevation of plasma PTH (secondary hyperparathyroidism) is typical but not always found in patients with osteomalacia."

There are always exceptions to prove any rule - and medicine is no exception. It's something I come across a lot on my own forum.

One option you have is to get a dexascan done privately - several palces in the UK do it and it costs about £55  - and that will show up low bone mineral density. 

Thank you for those links.

Hi Andrea, yes vitamin D deficiency does make your muscles and bones hurt very much. As a sufferer I can tell you it is one of the most debilitating conditions. With the Vitamin D your Dr has given you I am sure you will soon see and feel the difference even your hair will be better

If you have a very low vit D level then you need something more like 3x20,000 IU per week for a few weeks at least. The dose you were given is not enough to raise it significantly. I am on 800 IU as a maintenance dose after achieving a decent level - and in the winter I take a minimum of 2,000 IU/day - as recommended by our local osteoporosis expert here in northern Italy - where we stand at least a fighting chance of being able to make enough from sun for msot of the year.

I am on a very low dose because of my kidney problems. I have produced stones in the past and according to my GP I could do again on a high dose . So I am on the low maintenance dose. Unless I start to feel better shortly I will request to see my rheumatogist again. I last saw her 3 or 4 years ago

Welcome, Andrea. 

The tenderness you complain of is almost certainly caused by osteomalacia (adult rickets) caused by vitamin D deficiency. As the calcium is removed from your bones due to deficiency leaving the collagen matrix behind, they become softer, causing pain in the nerves running through them in response to deformation or load bearing. In addition to this, the resulting low blood levels of calcium can cause muscle wastage, especially in the glutes and thighs, leading to weakness and poor balance. Another key symptom is an extremely tender ribcage. Does any of this this sound familiar? 

Don't allow your doctor to fob you off with a vague statement of vitamin D deficiency, ask him/her directly if the deficiency has led to osteomalacia, as your symptoms suggest. This is the accurate diagnosis, and is made based on vitamin D status and symptoms - bone scans, etc should not be necessary as they can't distinguish well between osteomalacia and osteoporosis anyway (which does not cause pain).

Like you, I went through the old TATT/psychosomiasis stuff for years before being misdiagnosed with a chronic fatigue/fibromyalgia syndrome until a new doctor thought to check my D. 

Most health authorities currently recommend a 10-12 week course of 10,000IU Vit D/wk followed by 400IU/day for life to treat deficiency, but this is new stuff - many GPs are not up to speed on this yet and really don't understand just how debilitating the symptoms of osteomalacia can be. 

It might be worth asking why you have been offered such a low dose of vitamin D - perhaps you have a kidney issue and your doctor does not want to put you on a higher dose. 

I won't encourage you to do anything different from your doctor's advice, but I myself have continued to take 10,000IU vit D/wk since diagnosis three and a half months ago with the dosing advice of Professor Michael Holick, a leading vitamin D researcher. You can find his web page and books online, by the way, if you are interested. 

Recovery from osteomalacia is not an overnight affair. The general NHS advice is that it takes between 3 and 6 months, but Professor Holick claims this is more likely to be a year, given the length of time it took to develop osteomalacia in the first place. I am only very slowly recovering; it took 6 weeks or so to improve the acute brain fog and complete exhaustion, but I still have weeks at a time of severe pain (remineralisation of my bones - I don't know) and tiredness. My muscle weakness is not yet better. 

It's a long path to recovery. Take yourself and your symptoms seriously, as no one else will. Treat yourself well, find a routine that doesn't break you and don't be tempted to overdo things - as I regularly do, then bitterly regret!

All best wishes.

:-)

 

I am really angry with my Dr. I went to him because I keep trapping nerves in my lower back. The pain goes to my hip from there to my knee. This can be either left or right side. My bones are extremely painful, even playing the piano will cause pain around my rib cage and back. I soon give up playing and rest my back. My muscles hurt after just walking in my garden it is big but not massive. The tablets given to me to relax my muscles has caused more pain and also muscular pain in my upper chest and neck. I've stopped taking it. According to this "Dr" Lack of vitamin D is not serious. I am seeing another Dr next week. Maybe I can be put onto the correct dosage of D and taken seriously and not as an old bath bun

Aye, always worth getting a second opinion. I wonder what he/she meant by 'not serious'? Doctors speak a different language to us, so 'not serious' might not have anything ot do with pain and disability, but mean 'does not kill you while you are sitting in my surgery'!  

It's worth pushing the osteomalacia point, and if you don't get a clear diagnosis, ask what it would take, and also how long your modest dose of vit D will take make a realistic difference to your serum levels. If no joy, I suggest you ask Prof Holick via his website. He often answers questions on interesting cases such as yours. 

In the mean time, up the Bath buns! 

:-)

Thank you for your valuable advice. I was in tears last time I saw the Dr he said there was nothing wrong with me. I asked why I have the weakness in my muscles, legs pain in my hips legs back and ribs. I was told I was attention seeking. I really felt down yet so cross. My sore feet had been labelled the fault of my diabetes...not true. My headaches pain tiredness and weekends us not just imagination. I will keep the second opinion and if no joy I will contact Prof Holwick. Thank you again you have given me hope

Oh crikey!

I don't know actual figures from my blood count but she said the only abnormal one was my vit D....would she have done a calcium check? I imagine so. She discounted Diabetes, coeliac disease and anaemia.

My dose certainly seems low compared to some of the ladies on here. My GP doesn't want to see me until I've had another test after this current prescription of 3 months which will be around the end of July.

TBH I'm a lot more concerned now! You asked about rib pain...I've not experienced that in particular no.

I have no known kidney issue but have Gilberts Syndrome which is a sluggish liver..However she (the GP) didn't discuss the dose with me at all.

I shall look up the books you've suggested and keep following this thread. I feel better informed now but as I said, I also feel a little scared too.

I don't think you need to be alarmed - as I said to Loretta89480 above, osteomalacia doesn't make you keel over and die, but it can make you very sore, very fatigued and weak. It takes a long time to get that way, but the important thing is that it is highly treatable given sufficient vitamin D supplementation - and that's a whole lot better than going back to the TATT / hypochondriac / 'chronic made-up-syndrome' that vitamin D deficiency osteomalacia sufferers have been getting until recently.   

Osteomalacia may or may not present with low serum calcium; it's possible to have a normal reading whilst still suffering from demineralisation of the bones. 

I really do apologise if I have made you anxious - absolutely not my intention. Go forth! Take vitamin D! Recover! 

:-)

I think I had been met with that from the GP - normal bloods (not that he ever looked at vit D) for the 5 years I kept going back saying SOMETHING was wrong so I'm sure I had become the "heart sink patient" and all the usual guff was put forward "age, menopause, depression..."

But there is another possibility if you are a bit older and that is polymyalgia rheumatica. If you don't respond to vit D then it is well worth asking your GP about that - and I emphasise (because most GPs don't know) ESR and CRP are normal in a fifth of patients and it is frequently accompanied by low vit D. As well as all the other things mentioned.

I do wonder if PMR will turn out to be yet another D deficiency-related disease. In my case, however, I not only don't have the inflammatory markers, I am out of the age range, have no fever, sweats or weight loss. Can't imagine a doctor going near a PMR diagnosis for me!  

No that's so right - although it is appearing increasingly in younger people. Or perhaps I should say - being recognised in younger people which isn't the same thing. I didn't lose weight (oh that I had!), no fever either. I did have sweats - but I had them for years. Was that also PMR hatching?

I don't think it will be found to be D-deficiency disease, although like many autoimmune disorders it is often associated with low vit D - but there seems to be a link between Type 1 diabetes and low vit D in childhood in that the risk can be reduced by supplementation in neonates. What may turn out to be the case is that low vit D is one of the contributive triggers.