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Vit d deficiency

Posted , 21 users are following.

helenemiles
helenemiles

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 

Helene 

2 likes, 64 replies

64 Replies

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  • pat38625
    pat38625 helenemiles

    Posted

    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

  • pat38625
    pat38625 helenemiles

    Posted

    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.
    • helenemiles
      helenemiles pat38625

      Posted

      Hello 

      thank you for making the time to reply .

      i do hope that you also feel much better soon smile

      helene

  • EileenH
    EileenH helenemiles

    Posted

    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.

    • helenemiles
      helenemiles EileenH

      Posted

      hello 

      thank you so much for your response . 

      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 

      Helene 

    • track
      track EileenH

      Posted

      Hi Eileen,   Sorry I have come through on this thread, only way I could contact you personally.  If you remember I was told by my Dr to drop 1me every week, and I consulted with you and others and with my little experience knew this was too much and too quick.  So I went down 1mg for 1 month dropping from 9mg to 8mg.  Well I have been feeling terrible on the 8mg for 1 week, had a blood test which showed my ESR was 90, last week and CPR 98.8.  I have been on a strict diet, as my Dr also took me off my Cholesterol tabs, because of maybe creating pain as well.  Well my Cholesteral was 6.5 up from 5.00, he was not too perturbed about this, my good Cholesteral  1.5, LDL bad Cholesteral was 4.4 which was high, though did not disturb him at this point, but is checking it quite regularly now, just in case.  He suggested today to go back upto 9mg Prednisone for a couple of weeks, I felt okay with this at the time.  I am really upset that I am having problems getting lower off this Prednisone, after being on it for over 1 year, but what can one do?   The Prednisone has created Glaucoma as well.  I still have chipmonk cheeks too, but not as severe, though I guess this will get worse as I increase the Pred.

      I look forward to your sensible approach to this.

      confused

    • EileenH
      EileenH track

      Posted

      Sorry I've been so long, I'm on holiday and didn't have internet access!

      There is no virtue in being on a dose that is too low and if your markers are raised - it is far too low. You have ended up with a flare because of reducing too far/too fast - the most common reasons for a flare. You may actually have to go higher to get it under control, you are pretty much back at the beginning by the sound of things. 

      It took me over 4 years to get below 10mg - and even then it was only by reduing using the dead slow approach, 1/2mg over 6 weeks! I have been on pred for 7 years and none of my doctors are particularly worried. I've been back to 15mg this year because of a flare and my consultant is only bothered about me getting down to 10mg which I have achieved - further would be better but only if it works.

      You should be on eye-drops for the eye pressures - is it really glaucoma or just raised pressures?

      You can send a private message by clicking on the silver envelope under the avatar of anyone's name.

    • track
      track EileenH

      Posted

      Thank you Eileen, 

      yes I am on Timoptil eye drops for my Glaucoma and seeing  an Opthamologist, the eye drops are working very well, dropping the pressure.

      I appreciate your good advice.

      Hope you had a good holiday.      

  • tiswas24537
    tiswas24537 helenemiles

    Posted

    iwas told i was vit d defecient to had all your symptoms

    i was told to buy my own vit d because they didnt precribe vit d3 and thats the one i needed

    , no information on how long to take it for what strenght to take or even told to back for checks ,doctors expect you to be mind readers

    iv changed mine to a new femal doctor well new to me shes been at the surgery for a year iv never heard of her this tells you how much i go . 

    she seems to be a bit more on the ball and not so much of me doctor you patceint ,i know best ,so lets see what happens  .fingers crossed

    • helenemiles
      helenemiles tiswas24537

      Posted

      hi 

      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 )

      helene 

    • tiswas24537
      tiswas24537 helenemiles

      Posted

      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 

    • helenemiles
      helenemiles tiswas24537

      Posted

      That's not good !!! 

      You need to go back to your GP expeciallialy if your symptoms have not improved sad

      hoping that you soon get to the bottom of what is causing you to feel so unwell .

      helene 

    • EileenH
      EileenH tiswas24537

      Posted

      It may depend on your practice/healthcare trust policy and how low your vit D was. If it is very low then you should be prescribed very high dose vit D - which has to be ordered from Germany, is pretty expensive and only available on prescription. One of the first healthcare trusts in the country to make this a GP-led action was Gateshead in the northeast, before that it was a consultant recommendation that was required. For anyone who pays prescription charges it would cost about the same to buy your own - and of course it saves on the GP's budget.

      I have also come across a GP who told a patient that it was far too expensive to ask for a vit D blood test as it cost £200! It doesn't - an NHS hospital laboratory in the Wolerhampton area (not sure offhand which, it comes up with a google search) will do them for members of the public for £25. A vit D test must be requested specifically - it isn't done at every routine hospital test and I imagine a separate blood sample would be required, depending on where you live.

      With many supplements you don't notice the changes they make - at least not without having a very severe deficiency to start with. But optimal levels of most things helps your body work better.

    • tiswas24537
      tiswas24537 EileenH

      Posted

      thanks for the info

      . it was low enough to cause terriable pain in my feet and for my big toes to start leaning in .

      and i  still should have been given advice on how long to take it and what strenght to buy . doctors should be there to help   with information.

       

    • tiswas24537
      tiswas24537 helenemiles

      Posted

      iv got blood tests to be done on friday the 10th 

      just got to wait to see what comes back 

      i have no idea what tests will be done as i am only the patcient

      dont get told anything 

      all i know is she is doing hormonal tests as well .

      i v decided to take myself of everything till after the blood tests id ont no what if anything might mess up the tests .

      i was taking codliver oil at night because i believe this is the best 

      form of vit d3 ,and i was taking ionic silica mineral 

    • helenemiles
      helenemiles tiswas24537

      Posted

      Hello 

      it may be worth asking a few questions and sharing your symptoms with your doctor . If your levels are very low he / she should prescribe you with a course of vit d to bring your levels back up . You will then hopefully be feeling a lot better .

      it is important to have your bloods repeated to check that your levels have increased .

      I hope that you soon feel a little better smile

      helene 

    • Jaybelle
      Jaybelle tiswas24537

      Posted

      Don't forget to ask for paper copies of all your blood results. That way, you can have a good long look-see at what tests have been ordered, and what has come up as out of the reference range. Also useful to keep for future reference/comparison. GPs are under tremendous pressure to get through each patient in ten minutes or less and probably simply don't have the time to talk us through what they are doing any more sad
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