Recently diagnosed with Vitamin D deficiency
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Hi I have recently been diagnosed with vitamin D deficiency after years of pain and tiredness. I have quite a long history but have had surgery twice on my right foot. The first time was a straght forward bunion op and the second one I am now wondering if was caused by Vit D Deficiency as I was in so much pain after first op I needed the 2/3/4 metatarsals cuttings and replacing into different positions.
I also have Carpel Tunnel in right hand and been told I need surgery on it due to muscle waste, inflamed tendons and slight loss of sensation.
There isn't a part of my body that doesn't hurt and I am a 36 year old female. I am self employed and a mum (which can be very challenging with all the pain and tiredness at times!).
I have been prescribed pre d3 20,000 iu 3 times a week.
It turns out that I had a blood test in 2011 that showed I was low on vit d then so I have spent the past week battling between my GP and hospital to try get the levels and find out who did the original test and find out why nothing was done years ago for me. I am starting to feel fobbed off as no one is giving me a clear answer. The hospital won't give me the answers and told me they have to be faxed to GP which I asked for and after waiting days for this and chasing up twice the GP rang today to tell me they have recent blood test result which showed vit D below 30 if that makes sense to anyone?
They weren't sent the 2011 results so have had to chase up again!
I am concerned after having pain for years that this may have done damage. How long does it take to see a difference on that doseage?
My main pains are in lower right back, back right rib, hips, feet, hands, neck.
It would be great to hear from anyone else with vitamin D defiancy.
4 likes, 255 replies
jessicanh k11990
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Jaybelle jessicanh
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I agree with you about pushing through: I am working on a program of graded exercise to regain my stamina and fitness, and although it sucks and often enough sends me to bed, I am able to work part time again now and find that I can often grind on past the pain to a better place.
I read an interesting hypothesis recently that suggests that after certain illnesses, the brain resets its perception of pain and effort drastically, leaving us with chronic fatigue and unexplained pain. There are some new approaches to this suggesting that graded exercise can help to reset these perceptions back to a more realistic and functional level. Anyways, I'm keeping going. I desperately want to be able to do a five mile hike again one day.
It might be useful for you to get an update on where your blood D levels are at now, so you can see if you are out of osteomalacia and rebuilding bone and give you a realistic target for your D supplement, as 190,000IU/wk is almost quadruple the usual 50K/wk high dose given to raise levels out of deficiency. Anecdotal reports on these boards suggest that for many people, a very high dose of D seems to be associated with greater pain until blood levels rise and they can drop their dose.
All best wishes,
:-)
jessicanh Jaybelle
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Im sure you know what its like to be too tired to do what you know needs done. Bloodwork is past due. Since i dont remember to take the supplements every day, sometimes going weeks without, i doubt my levels are any better and if they r theyre surely nowhere near the optimal level.
If youre at the point that you can commit to a daily routine, including some exercise, it sounds as though youre seeing the light at the end of the tunnel.
Thank you for all the info. Its nice to have a dialogue with someone that knows about this, personally!
😊
EileenH jessicanh
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jessicanh EileenH
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EileenH jessicanh
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There's a lot of rubbish spouted in the internet about things that affect absorbing vit D!
Google "vitamindcouncil blog does-it-matter-how-you-take-vitamin-d" for a good article that is reliable.
Sarah23456 k11990
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I was actually diagnosed with my deficiency by a nurse practitioner. The 3 GPs I saw over 7 appointments did absolutely nothing even though I was showing them visible symptoms of deficiency as it affected my immune system.
The GP partner was the last doctor I saw, who threatened to strike me off the practice list and told me I was making my foot, ankle and leg pain up. I then saw the nurse practitioner in January 2012 who took blood for tests, but then as the surgery didn't ring me up with my test results I presumed I had something you couldn't test for. I ended up going in again due to breaking toes and got the nurse practitioner who acted oddly when she gave my test results back. I think she got in trouble with that nasty man for testing and diagnosing me with 2 issues both of which he tried to cover up. However if she hadn't I would have been in A&E, and she would have got in trouble for her nasty boss's treatment of me.
I'm sorry but that GP partner is a nasty man as he lied to my face about some blood test results in 2009 which showed a reduced white cell count which means all the skin and the ENT infections I had were more likely. Then he repeatedly refused to send me to ENT until I had an appointment with a student observing who asked him to. He then said I was making my symptoms up out of her ear shot, though the ENT consultant scheduled me for surgery immediately at my ENT appointment.
The reason why I know it's linked to my vitamin D status I only had a similar skin infection once since instead of every 6 weeks.
Anyway I changed to a new surgery after having my large dose of vitamin D, do not see male GPs and now pay for my own private blood tests if I'm tired instead of fighting with the GP to send me for tests.
It took me 3 months where I couldn't work to get slightly better on a high dose of 60,000IU a week of vitamin D as I was in pain except for the last week on the prescription. There was a 3 month gap between between being tested and getting my results so not sure of my starting level but I had a couple of broken minor toes. (As soon as they realised I could sue them if I got ill over the second issue they had no issue ringing me with my other test results.)Then 5 months on 4-5,000IU daily of vitamin D to get my blood level to 67. Then 2,000IU as a maintenance dose. Unfortunately I've had to up my dose this week as I'm insufficient.
It took me a year of being on a maintance dose to feel completely normal and to be able to exercise normally. Normally for me is 3-5 times a week with at least on session of 2-3 hours. However I have issues with periods and ferritin levels, and my white blood cell count. I also have been left with damage to my feet.
You all need to be aware lots of allied health professionals are not aware of the impact of severe vitamin D deficiency and osteomalacia has on people. Therefore they will tell you to exercise when you physically cannot or should not as your muscles and bones aren't strong enough. For the first few months if it hurts don't do it then when you are on lower dose start walking regularly then when you are on your maintenance dose start normal exercise.
k11990
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I still have issues with my vit d levels. I had carpal tunnel surgery in September which hasn't fully worked as I still have pain and lack of movement in my hand. I'm about to have a general anathestic next week for a plasma transfusion treatment to try help plantar fasciitis on my foot. I've gone through months of soundwave therapy for it and steroid injections but it's still agony.
My whole body still really hurts and I'm really struggling some days with tiredness. I've had recent blood tests which has shown an increase in my vit d levels but it's at the low side so I've been prescribed vit d and calcium tablets. I still don't feel any closer to getting any clear answers.
annette_49166 k11990
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k11990 annette_49166
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Sarah23456 k11990
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While your doctors will argue you are OK if you are in within the range, if you are not in the mid or high part of the range you need to supplement.
If you are in the low part of the range for both vitamin B12 and folate take a B complex supplement.
If only your vitamin B12 is low then take sublingual methycobalamin. As this indicates you have issues absorbing B12.
B vitamins are water soluble so you body will excrete the excess. In addition there is some evidence that high levels of B12 are protective against dementia.
If you are in the low part of the range for ferritin you need to take about 60mg of elemental iron daily with vitamin C. (Most over counter supplements contain 14mg so you need to ask the pharmacist for ferrous fumerate.) You will need to get retested in 5-6 months to check your level to ensure you don't suffer iron overload.
lini38837 annette_49166
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I tend to take a combo dose of 800iu a day, with extra D3 from Nov- April in the UK winters and baths throughout: the year)
lini38837 k11990
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lini38837 k11990
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lini38837 k11990
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How do I feel, well alot better but still get burning feet and aching shins but nothing like it was last year. I have seen a chronic fatigue specialist last month who has advised that I need to continue self supplement and get some sun (without burning) this summer. He seems to think alot of chronic fatigue symptoms are similar to vit d deficiency. He has seen patients with low levels and it has taken upto 2 years to recover and feel really well. I am not there yet. Also, I think from my own experience that it can take years of misery before symptoms become identified. I was not one for sunbathing, used sun factor 25+ became overweight from less activity from all the pains. Vit D3 levels can be lost when stored in body fat as vit d is fat soluble. So, I would advise anyone who feels ill and has levels below 60 to get supplements and get 15mins in the sun in Uk summer or abroad if possible. I have never been ill like this and I am aged 58 now. It seems to hit at any age though, but the older or fatter we get we need more Vit D either from the sun or supplements or both.
I wish you all a speedy recovery x
pjcanada lini38837
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pjcanada
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EileenH pjcanada
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pjcanada EileenH
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I love the sun, but last summer I was working a lot of overtime(indoors), not getting home till after 7pm, and was working on weekends, I figure that is part of the reason I'm so low (and my gardens are a mess).
It's been a long drawn out winter here... was hoping by now I could be outside a little more, even if it doesn't help with my D level, just being outside makes me feel a little better. Mind over matter, I'm sure.
I was just hoping the supplements would be more effective that what they have been. I'm hoping once it gets nice enough to be outside, that will help also.
Worried about next winter. Have you ever tired a tanning bed? I have to look into our local one here to see if they use UVB lights. I just don't want to go through this again next spring. I've never felt so horrible in my life.
EileenH pjcanada
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You cannot assume you are making vit D in your skin - not everyone makes anything like enough even when out in the sun long enough all summer. It is the ideal, yes, but not to be relied on and if you are that deficient than you probably don't make enough. The only way to know is by checking your vit D levels to SEE if you are still OK.
If you continue taking the dose you have been you will match the recommendations. If you take the 5,000 IU your doctor said it will take longer but you will get there. I'm not entirely convinced about the "corticosteroids lower vit D levels" to be honest - they looked at patients who had been on pred in the last 30 days, WHY were the patients needing pred? Probably in many cases because they have an autoimmune disorder of some sort and vit D is commonly found in patients with autoimmune disorders.
Don't use sunbeds - the risks still outweigh the possible benefits and you may still not produce vit d in your skin. The supplements are safe - once you have got your vit D up to something in the optimal range (and check your level, there are 2 units for measuring vit D levels in the body and the numbers are different), carry on taking at least 2,000 IU/day as a maintenance dose. The RDA of 800IU is simply not enough - it was based on old information and we need more.
pjcanada EileenH
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I have good days, and horrible days.. and some not so bad. Just want to feel normal again, but I look back at some of the issues I've been having over the last year, and I'm thinking I've been low for awhile...
I also find if I don't eat 3 good meals a day.. i feel worse, I'm going to have to take the time to eat, which is hard some days at work... been taking almonds with me to snack on it I can't get my lunch break at a normal time... some days it's 3 in the afternoon before I can get it.. depends on the day...or taking smoothies or something I can drink when I can't get to eat....I'm sure poor eating habits didn't help either...
I was put on the steroid for a sinus infection that wasn't getting any better.. I agree with you on that, it was probally low D, that is also improving,slowly.. I was given the steroid the same day I was told I was about the D... had I know then what I know now, I never would have taken it.. it was a 5 day nightmare.. and took another week for the symptoms from the drug to wear off. Horrible stuff... I was just glad it was only 5 days...
If I'm on a high does of D.. How will I be able to tell if my body is making any on it's own?? I have to go back in June to get my levels tested again..and I'm hoping the weather is better to get outside, May can be cold here sometimes... and rainy... heck, we've even had snow a couple of times....
Thanks for the help Eileen
EileenH pjcanada
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If the symptoms DON'T improve on the high dose vit D and your blood levels are back into an acceptable range, then your doctor needs to do some more investigations. Low Vit D can cause these symptoms - but so can other things and low vit D can be a sign of them too.
Be grateful you just had 5 days of pred - I have a form of rheumatism/arthritis and the only drug that manages the pain and stiffness is pred. I've been on it for well over 6 years! But actually, I'm lucky, I really do have no side-effects at the dose and with the sort I'm on. If you'd said you felt loads better on the pred then I'd have suggested you might have something else.
Diet won't make a lot of difference to your vit D, there are few foods with much in, but a good diet will make you feel a lot better for other reasons. If you can't guarantee a lunch break (what are you, a nurse or a paramedic ) try having a really good breakfast - not just cereals but something more like brunch with plenty of protein (eggs, cheese, cold meat/bacon) that will keep you going until a late lunch far better than a bowl of cereal which leaves you starving about 10.30. Smoothies are a bit poor in that way too, like any processed carbs - they cause a spike in blood sugar because the sugars are freed from their fibre and get into the bloodstream quickly and then fall just as fast. Far better eaten as the whole fruit - a peeled and segmented orange or a chopped up apple in a tub to nibble with the almonds or other nuts is good.
pjcanada EileenH
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I don't know how you handle the pred... I was going crazy on it... just glad it is out of my system... hats off to you for having to take it... couldn't even imagine...
Been a crazy week at work... I work retail, but I'm on the floor and in the warehouse, so my job can get a little insane, and being short staffed with 2 very lazy workers doesn't help. My boss is wonderful though and has had health issues of her own, so she has been very understanding. I've been making sure I have been eating, even it it's on the run, so I feeling better that way.
Finally having some nice weather this weekend, and I missed most of it because I was at work... go figure,
Alergies have been killing me this week, worse than normal, but I'm not the only one complaining.
Symptoms are about the same. My doctor was in the store, so she stopped to chat for a bit... told me to be patient, because I was so low, it could take awhile... I'm just feeling frustrated. The aches and pains aren't as severe, it's just the foggy head that is getting me down. I'm still very tired, seems by 8pm, I'm done.. hoping getting outside in the sun will help. I have a couple of days off, so going to take full advantage of the weather. I know it's still early in the year, but I think just getting outside will help my mood. I hate being stuck indoors.
I have over a month to go before I go back to be tested... I've only been on a high dose of D for a month now... as I said, things are improving, just very slowly... I hope I will be up when I get it done. I'm just sick of feeling sick and tired all the time... and with summer coming, I want to feel normal again.....Just wish i would have caught this earlier before my level got so low....
EileenH pjcanada
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It sounds as if you have a good boss and a pretty good doctor, at least she cares. I'm really looking forward to hearing how your vit D progresses and really do hope getting it in a normal range will do the trick.
I noticed this morning that the temp in Calgary tomorrow is to be 25C - is that normal for this time of year? I'll be there in June, Whistler in May so please order me nice weather - in May I'm there to work but we have very long lunch breaks I gather. In June it's holiday...
pjcanada EileenH
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It's coming.. I'm just wanted to feel better faster, which I know it is going to take some time... my husband keeps telling me he notices a difference, but I'm just impatient... I can admit it.. one of my faults I guess. lol..
It has been warm out west... I'm in Ontario, so hopefully it will be like that here in a couple of weeks. BC is always warmer, by May it should be beautiful out there. I love BC, have only been a couple of times. My Mom lived in Alberta on and off, so I did get to see some of the west.... I have a friend who lives in Victoria and loves it.... I haven't been to Whistler, but I hear it is wonderful... so enjoy.. and will keep my fingers crossed for wonderful weather for you!!!
lini38837 pjcanada
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I'm really well now pjcananda, I even have a dog to walk! I's taken two years since diagnosed with the deficiency and 6 years of misery with a mass of symptoms and I live in the UK so no measurable sun until May realistically! My levels now are about 60 as I get tested mid winter to check this and abstain from supplemeting two weeks before the test. Also, I supplement at least 20000 i.u. units of Vit d3 per week in the winter and take magensium baths and supplements occassionally.
It is a really horribe deficiency, and is known to sneak up undetected for several years. I'm so pleased that I seem to have recovered.
jennjenn54921 pjcanada
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Hi PJ i was diagnosed as D deficient and I am 34 . Super scared because of the pain in legs. Did you ever get to feeling better. I'm on 50000iu weekly and my level was 6.9.
LyLy jennjenn54921
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Hi Jenn, just wanted to see how you are doing? And what are your symptoms? I was diagnosed 4 months ago vitamin d deficient at 13. The fatigue is the worse, I had to quit my job, couldn't drive because of the dizzy spells, and homebound for now.
It has been a very slow recovery for me, not even close to feeling better yet. I been on the vitamin d council and magnesium advocacy group researching and they give different opinions on vitamin d deficiency.
Magnesium advocacy group is against supplementing with synthetic vitamin d but recommended supplementing with magnesium. Raising magnesium will raise vitamin d.
I am confused as what to do. I was supplementing with 50k d2 for 4 weeks and 5,000iu for 3 weeks and had to stop because vitamin d exasperated my magnesium deficiency. I felt so weak, exhausted and dizzy it was scary. Ended in ER many times thinking I was dying or something.
The irregular heartbeats and palpitations. Weird head sensation and headpressure, muscle weakness and hands going numb is crazy how a vitamin d deficiency can cause.
EileenH LyLy
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Obviously you need to take magnesium as well! Preferably in the form of green veggies and nuts and seeds.
Google "Magnesium and Vitamin D’s Co-factors vitaminDcouncil" for a very interesting article.
LyLy EileenH
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Yes, the last three weeks I supplemented with 4oomg of magnesium and vitamin k2 with d3, but still felt very weak and fatigue.
Magnesium man said until I get my magnesium RBC up to at least a 6 before I supplement with d3 or else it will create havoc in my body.
That's what I am going through right now, trying to bring my magnesium level up before I can even work on my vitamin d and calcium levels.