vitamin d

Hi thank you for your reply. The reading is in nmol/l which is why I thought gp was wrong to say it was normal

He's obviously working on very old recommendations - there are still a lot of dinosaurs when it comes to vitamin D! I mentioned it because there are US contributors on here too, not just British.

20 nmol/l is taken as deficient/borderline severe deficiency these days - so yes, I'd agree with you and be down at the chemist buying my own and aiming for 5000 IU/day for the next few months. The recommendation to replenish such low levels is 60,000 IU per week for 8-10 weeks. The high dose stuff you get from the doctor is 20,000 IU tablets so it is up to you how you want to split it: all at once or 3 x 20,000 IU on different days. Same applies if you get your own supply - and then there is no-one to argue with you!

If the horrid symptoms don't go after 3 months on that sort of level of vit D then you should be insisting on further investigations - just in case. People I know say they felt better (not well, but better) within a few weeks. In fact - if your GP says it isn't the vit D level, what is he putting your symptoms down to?

He thinks it may be fibromyalgia

How old are you? What are your symptoms? Vit D deficiency can be very similar to polymyalgia rheumatica too but that does tend to be in older patients (over 50 usually but plenty of people in their 40s have it). I assume he did an ESR and CRP? They are usually high in PMR (although they are normal in 1 in 5 patients) but normal in fibromyalgia.

Hi I am 49, symptoms are:

Extreme fatigue

Every part of my body hurts

Can't find my words

Memory problems

Keep stumbling

Really painful feet

Muscle weakness

My ear was raised

My esr sorry

Did symptoms start all of a sudden or what? Did something precipitate them

Hi, they have come on over time but got gradually worse when I started my new job doing 12 hour shifts. People were commenting on how I was walking funny and half way through shift I just wanted to go to sleep and each day was getting worse.

Do you have stiffness, especially of your shoulders and hips? It certainly does sound as if you have an autoimmune problems of some sort so I hope your GP is prepared to refer you to rheumatology fairly soon. If your ESR is raised then it is less likely to be fibromyalgia so don't let him fob you off with that.

Hi EileenH thank you for your comments, I definitely won't be letting him fob me off. Normally I would just say ok but I feel so ill and everything just seems like a massive effort. It can't be normal to feel this way x

Hi Arlene, 

All those symptoms are very typical of vit D deficiency, especially the osteomalacia - bone softening, causing joint pain, particularly in the feet which take a lot of weight. Some muscle wasting, especially in the glutes and thighs, is also part of osteomalacia, which can cause sufferers to be more likely to stumble - I know I did. I went through this last year. It has taken about a year to recover. I can more or less walk, and think, in straight lines now, but it took a good twelved months of high dose supplements for me. All best wishes. :-)

Thank you jaybelle, good to hear you are on the mend its awful isn't it! My gp has put my result as normal though so will be arguing that with him at next appointment as can't go on feeling like this.

Take care x

Although I would never counsel anyone to ignore their GP, I found mine (and the two or three before him) absolutely useless. They either failed to identify the vit D issues, or when eventually pinpointed, made light of the symptoms and condition in general, considering the matter dealt with and over once vit D was prescribed. It's been a long and very lonely push. As Eileen H says, if you get no joy from the doctor, at least you know you can buy vit D over the counter! 

Hi, yes I will do that. But it would be much better if Drs recognised it and treated it don't you think? I can't believe that lack of 1 vitamin could make you feel so rough! do you mind me asking what your levels were at?

Can't even remember the numbers, now, but they were very low as I recall. I recommend the books and lectures of Professor Michael Holick (available on Youtube), who is a world leader in Vit D research and treatment. I found them very helpful at a time when I wondered if I was going mad and feared I might never be right again. 

Thank you I will have a look at that x

You're quite right  - but this is a chicken and the egg situation at present. Low vit D is commonly found alongside many autoimmune disorders but it isn't known whether it is cause or effect - and it just so happens that low vit D and whatever it is often have very similar symptoms. Sometimes replensihing the vit D helps a lot - sometimes it doesn't. If in doubt - make sure the patient is vit D replete and see if it resolves. If it doesn't - keep looking.