I have recently been made aware that I am vit d deficient , following feeling extremely rough for a considerable period of time .
Symptoms have included:
severe pain in my shoulders , elbows ,hips
loss of muscle strength
poor coordination , very wobbly at times
exessive sweats
fluctuating body temperature - sudden change from comfortable to freezing or the other extreme excessive Heat !!
extreme tiredness
lethargy..... To name a few
I have found this forum really informative ,and reassuring hearing that with vit d supplements a lot of writers have noticed a big difference in their symptoms.
my quesion is once diagnosed as vit d defficient is this something that is prone to drop in the future ?or following a course of supplements does your own immune system usually maintain its levels ?
Would love to hear from anyone who has a bit more knowledge than me
Hi Helene, I am relatively new to PMR and pred (steroids) but was prescribed Ad-cal which is calcium and vit d by my gp. Also I had to buy extra vid d as I wasn't getting enough according to my bloods.
Someone who is more experienced will be along and can answer your questions. Hang on in there and good luck. Regards Pat
I am so sorry Helene, I was on the wrong site, please forgive me. I belong to the site PMR/GCA, also it's not the first time I have done this. Oh dear my brain is tired. Good luck anyway.
It is nothing to due with your immune system. Very simply, VitD is made in your skin by the action of sun on cholesterol. Your body is able to make the most at about age 20, by the time you are 70 it can make about 1/4 as much. You have to be out in the midday sun (11am to 3pm) and if you live in countries north of a line from Turin in Italy to Boston, Mass in the USA it will only happen between May and September. If you use sunscreen it reduces the amount you can make - Factor 8 cuts production to about 10%. You need at least your face, shoulders and arms to be bare and in the sun for about 15 min every day. You can get only about 10% of what you require from diet - there are very few foods that are naturally rich in vit D although in the USA many foods are fortified. No foods in any European country have added vit D in the amount needed.
If you are deficient because of not going out in the sun or your skin factory isn't as efficient as it was, if you stop taking enough vit D the level will fall again. It is at its highest in September and lowest in April as you use it up over the winter the stocks fall. Our local osteoporosis expert here in northern Italy where I live says 80% of the population is deficient (despite all our sun) and tells us to take at least 2,000 IU per day all winter.
If you were very deficient you need more than 5,000 IU/day (that's what you said in your other post isn't it?) to build up the stocks. Your doctor should have prescribed high dose vit D - and by that I mean 20,000 IU capsules and you should be taking that at least 3 times a week for several weeks. One lady on another forum took that and her levels were back to normal - but within 6 months they had fallen again and she needed another course. Since then her levels have stayed stable but she takes a decent supplemental dose all year round and has her vit D level checked every 6 months.
However Helen - can I be cheeky and ask how old you are? Your symptoms are very similar to the illness the other lady mentioned, PMR, but it is unlikely if you are 20. If, on the other hand, you are mid-40s or over it should be investigated and not just put down to low vit D.
Vit d is a fat soluble vitamin and as such is found i fatty foods. Unfortunately many people thinking they are doing the right thing, cut out all fats from their diet and this leads to other problems. It is essential to have healthy fats in the diet and by doing so you should not fall into a deficit unless health factors affect your levels. Eat avocados, olive oil, coconut and other nut oils, oily fish, nuts etc. exposure to the sun is very useful but not the only way forward otherwise religions which require women to cover themselves from head to toe in clothing would cause a bit d deficiency epidemic!!!! You need to protect your skin from the sun so don't go mad and put yourself at risk from skin cancer. Supplements are generally good these days but don't buy cheap ones at any time, buy a good brand from a health food shop with a good turnover.
I don't want to appear to disagree with your statement about vit D being found in fatty foods - but the NIH says
"Sources of Vitamin D
Food
Very few foods in nature contain vitamin D. The flesh of fatty fish (such as salmon, tuna, and mackerel) and fish liver oils are among the best sources. Small amounts of vitamin D are found in beef liver, cheese, and egg yolks. Vitamin D in these foods is primarily in the form of vitamin D3and its metabolite 25(OH)D3. Some mushrooms provide vitamin D2 in variable amounts."
If you check nutritional analysis tables you will see there is no vit D in olive oil, avocado or coconut oil, in fact there is no vit D in almost all plants except mushrooms. The role of these oils is to improve absorption of vit D from other sources from the gut and are important for that reason.
There IS a serious vit D deficiency epidemic amongst women in the ethnic groups you mention with quite high rates of rickets amongst their children. Rickets is reappearing in the UK too and the Southhamptom Hospital has published artclies about this in the past. The recurrence is linked by their experts to the massive use of Factor 50 sunscreen on children and the amount of time they spend indoors compared with even 30 years ago. The highest rate of vit D deficiency by the way is said to have been found amongst Australian dermatologists.
Even the cancer charities have started to recommend that people should spend 10-15 mins per day in the sun without sunscreen first - not allowing themselves to burn but breaking up the time into 5 minute bites if necessary.
Exposure to the sun remains the predominant way to obtain vit D - if you choose not to go out in the sun, you require vit D supplements because unless you eat something like half a pound of salmon every day or a 17-egg mushroom omelette you won't get enough vit D from food unless you live in the USA where milk, orange juice and cereals - NONE of these are fortified in the UK.
These are figures suppled by the NIH and other governmental agancies who have done the laboratory testing. I didn't make them up.
I can see where you got this impression but the reference to olive oil is merely in relation to healthy fats. And their need to be included. In the diet . As you are well read you will already know this of course. The overall synergy of nutrition means we cannot exist without a very well mixed balanced diet in order to supply our body with every micronutrient needed . The foods containing vit d are indeed fatty foods as I stated and as you have listed. Most people would eat well from the dairy group , oily fish etc etc and under normal conditions would rarely suffer from such a deficiency in the western world. It should not be necessary to eat ridiculous amounts of any one food to get the supply either if your diet is varied.Under normal conditions it is not difficult to obtain enough vit d from food sources even in n Europe where the hours of sunlight can be significantly less than in other parts of the world, supplements are not necessary for most people unless they consider themselves to have an inadequate diet or have a medical need .No one would argue that exposure to sun is indeed a means of increasing available vit d and I doubt that anyone living in the uk and other parts of Northern Europe would have any prob
em with minimal exposure to the sun but it is unwise to expose yourself to full sun, there is no need to risk burning by exposure prolonged or otherwise to full sun especially around midday, on holiday etc. just going about your business lightly dressed in summer will provide sufficient exposure..
I don't wish to get into a bickering session, we are here after all to try to help Helen in her quest for vit d balance. Only her doctor knows the history behind her case and I am sure is dealing with the underlying reasons for the difficiency as we speak. Good luck Helen, hope you are feeling better now , it's amazing how quickly the symptoms of deficiency disappear once that deficiency has been identified. On a plus note vegans seem to remain very healthy and they eat neither oily fish or dairy foods! Wonder if they have to live on supplements. The ones I know are not sun worshippers either....interesting , perhaps the vegans out there can enlighten us.
I am ..... 49 and take every opportunity to be outside whatever the weather .
I have been prescribed vid d 3 22'000 for the next 5 weeks being reviewed in 2.
The reason for my question is because I have never heard of anyone share their story of vit d deficiency before or hear of anyone with such painful and restrictive symptoms .
Never realised that it was so common at all .
I wondered if some are more prone due to an underlying condition ?
dont think I have ever felt so rough ..... Always worked full time , full time mum etc busy busy
I have been prescribed vit d 3 as levels 19 the dose 22,000 3 capsules 3times a week for 5 weeks . Bloods to be repeated .
I hope that you soon feel better .
I am feeling a bit more optimistic having read the comments on this forum , however no change as yet ( but hey only 3 caps taken maybe a little impatient of me )
re diet ... This is what I don't understand , I eat probably over the recommended weekly amount of nuts !!! Love them and take a bag to work daily .... Don't cover up to excess ... Only 49 .... Bit of a mystery really but the symptoms are awful have never felt so ill feel like a 90 year old !!!!!
I have been prescribed vit d3 22,000 3 caps 3times a week for 5 weeks and then bloods will be repeated .
If taking the vit D supplements doesn't resolve the symptoms do ask your GP to consider whether you might have something called polymyalgia rheumatica as you are old enough for it to be considered a possiblity and the symptoms you complain of are very typical. Vit D deficiency is one of the exclusion diagnoses and there are a range of other things which are all very similar in presentation.
But I do hope the vit D does the job - it should take a couple of weeks maybe for it to work though - all depends how deficient you were as well. You will tell us won't you?
If taking the vit D supplements doesn't resolve the symptoms do ask your GP to consider whether you might have something called polymyalgia rheumatica as you are old enough for it to be considered a possiblity and the symptoms you complain of are very typical. Vit D deficiency is one of the exclusion diagnoses and there are a range of other things which are all very similar in presentation.
But I do hope the vit D does the job - it should take a couple of weeks maybe for it to work though - all depends how deficient you were as well. You will tell us won't you?
quite thought provoking would be good to hear from the vegan population for their stance on the subject .
I only started on the supplements this week so no change as yet , but I am feeling more optimistic and hoping that in a couple of weeks I will be reporting a positive change .
Yes, mine was about that even though I spent a lot of time out in the sun with no sunscreen. My daughter's was 12. I just used H&B stuff and got it up to nearer 50 in a few months. Once it is up you just need to keep it at a decent level.
now see i was told to buy my own vit d because they dont prescribe vit d 3
honest you here so many differant stories from people
i brought some and took them for a good while but didnt get told to come back for a check or anything i stopped taking them because i didnt feel they were doing any good . i think now il just wait to get my bloods and see for sure whats going on ..for sure and hopefuly get more advice and help from this gp .you never know mircles do happen