severe vitamin D deficiency -

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Hi everyone

I have recently been diagnosed with Vit D deficiency...the level in my blood was under 10 (it was actually at 3) when it should have been at least over 50.  I think it has been this low for at least a year. I didn't get any sunshine at all last year (severe hot flushes so avoided sunshine) without realising the consequences.  My diet has not been ideal either.  After several blood tests to test thyroid, and lots of other things, the locum GP came up with a severe Vitamin D deficiency.

Over the last 6 to 8 months my health has noticiably deteriorated with  severe tiredness, no energy, really bad aches and pains, with severe pain in my joints, disturbed sleep, very depressed, etc. Plus I am pre menopausal and have depression, all of which are being treated separately and fairly successfully.

Anyway a locum GP put me on 20000iu of Vit D daily for two weeks which I finished this week...and now my usual GP has put me on a long term daily maintenance dose of 800iu Vit D (and didn't seem sure why I was on a daily dose of the 20000).

Anyway I had a busines trip yesterday, 6 hours total travelling and 6 hours in meeting, and half hour walks to the station and back....and the result on my body has been catastrophic.  Really aching all over, severe pains in my arms and legs, both much more than usual, bad back, and just generally feel awful.  Is this to be expected?  Is this normal with a vit D deficiency.  How long will it be before I start to see any benefits.  The doc mentioned it will be at least another 6 months before my blood levels are tested but I work full time, am a carer at home and really want to start feeling better soon.  Does anyone have any advice or information that might help please?

Debs

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  • Posted

    Exactly WHY is it going to be 6 MONTHS before your bloods will be tested? You have had a disastrously low vit D level - and your GP doesn't know why you were put on high dose vit D as a result? And he has put you on a "maintenance dose" of 800 IU? And hasn't checked your status now? No, I'd correct him on that pdq.

    By the way, only about 10% of the vit D you need can be acquired from diet - unless you eat half a pound of wild salmon a day! Or 17 egg mushroom omelettes so don't feel to bad about your diet! In the USA milk, orange juice, bread and cereals are fortified and people are still vit D deficient. Only cereals are fortified with vit D in the UK. It's a historical thing - they were fortified in the war but some manufacturer made a mess and made some small children ill so it was stopped.

    For a start, find yourself another GP or ask the current one to educate himself. What a shame the locum wasn't rather longer-lived. That amount of vit D supplementation should have got you back to where you should be (the level they quote as acceptable varies from region to region but in Gateshead healthcare trust it is 75-150 ng/ml).

    Very low vit D is often found in autoimmune disorders but whether it is cause or effect isn't clear. Have you been tested for hyperparathyroidism? Having been on vit D at such high doses have you had your calcium levels checked? Those could all be linked. Low vit D can cause depression by the way so that could also be linked.

    If your symptoms were due to the low vit D (and they could have been) then it should have improved already with the 2 weeks of high supplementation - but it is difficult to tell if you were absorbing it properly without having the blood levels checked. And don't let your GP put you off by telling you it is expensive to check - one told a lady it is £200. No it isn't, a Midlands NHS hospital charges £25 to do it privately.

    The symptoms you describe could be due to calcium levels being wrong, an autoimmune disorder that is associated with the low vit D or even something else and your GP needs to get his brain in gear - and I bet he's writing it all off as your "depression" so don't let him get away with it.

    Given your age and some of the things you describe I would also wonder if maybe you have something called polymyalgia rheumatica - especially since the symptoms got so much worse after physical exertion. 

    https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316

    https://patient.info/health/polymyalgia-rheumatica-leaflet

    If you follow the first link it takes you to a post with a whole load more links to information about PMR - see if anything rings any bells. The second link is to the info leaflet on this site, ditto. 

    Typical symptoms are stiffness and pain in hips and shoulders, not being able to raise your arms above shoulder level at most, sweats, finding it difficult to turn over in bed, get up from sitting in a chair, being stiff in the morning that lasts through the day as well sometimes, being stiff after sitting for any length of time, fatigue, depression, sore and/or swollen feet and hands. 

    I imagine the locum checked your ESR and CRP levels - they are indicators of inflammation in the body and are raised in many patients with PMR but about 1 in 5 patients do NOT have raised values so having normal levels does not rule it out. 

    Anyway - I hope some of this helps and do come back and tell me how you get on.

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    • Posted

      Hi Eileen, thanks for your response.  I have printed this off and will go through it at the weekend, there's a lot to take in, thanks.
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  • Posted

    Hello Debs,

    I also had a level of 3.

    Here in France, you take 100,000 iu, and than follow that with

    another 100,000 iu a week or a month later. I have forgotten because

    it was a few years ago. Now, I take 1,000 iu a day.

    The low Vit D was a problem, of course. And I have read that after

    the age of 65 or 70, the body no longer can convert it from the sun.

    You are younger, but it's an interesting point, if true. .  .

    However, the real problem that was causing my problems, similiar

    to your own, was that I have hemochromotosis, an abundance

    of iron in the blood.

    So, I am responding to you to suggest that perhaps you be tested

    for hemochromotosis--either genetic or acquired.

    The treatment is to be "bled" until the iron level goes down.

    It has taken me three years of bi-monthly treatments to reach

    normal levels.

    I do hope that you find the source of your health problems.

    Good Luck!

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