Vit d deficiency

Low vit D is found in many autoimmune disorders but as far as I know it isn't really established whether it is cause or effect although a study in Finland giving neonates vit D supplements led to a far lower incidence of Type 1 diabetes in their teens - which suggests causation. 

My daughter has a level of 12 - can I get her to take a decent amount of supplement? And what did the GP do? Gave a severely deficient patient who often requires steroids Adcal - 800 IU! How does one get past that?

I take along with the 25,000iu twice weekly prescription a daily 5,000iu pill which I bought myself. I plan to continue to take that after the prescription strength stuff runs out.  Both of my children take vitamin d supplements as well. They were both exclusively breastfed and at risk for that reason. As to whether the deficiency is causitive or a symptom of autoimmune disorders I wonder if it isn't a bit of both. I live in a very sunny hot country growing up and it was only after moving to the UK that I developed hypothyroidism. However, my mother and sister also have autoimmune disorders and vitamin d deficiency and live in the hot sunny country, spend lots of time outdoors, and have no other risk factors for  deficiency (dark skin tone,etc.)  Obviously more research need to be done. 

I have found my GP's completely useless with regard to this. It took me 6 months just to get the blood test.

Oh yes - tell me about it! I live in a reasonably warm sunny country - northern Italy - and it is said by our local expert that over 80% of the population is vit D deficient despite the fact we do mostly spend a lot of time outdoors and I'm fairly sure don't use sunscreen. 

But we at least know - spread the gospel!

Thank you for your advice  

I am being reviewed on the 13th , symptoms appear to have increased 10 fold over the last 5 days .... Pain travelled to back and neck ..... 

Poor me really disabling ,frustrating and so very painful !!

have never took so many Zapain in my life 

Well, he's rather out of step with most of Europe! 

Hi jayanne

sorry to hear your GP has not been helpful .

if your symptoms have been anything like I've experienced get back there as you need further investigations x

make sure you take care of your self ,and seek further advice if your GP has not been helpful .

helene 

Are you over 40? Look at the links I put up for Helene. Any younger and it would be difficult to get most GPs or rheumatologists to consider PMR (it can affect younger people too)but it can appear very similar to vit D deficiency and overlaps a lot with fibro. The difference to either of those is that it responds dramatically to a moderate dose of prednisolone.

Hi Jayanne. You got to see a consultant? Wow! I'm still at the bottom of that slope, however my GP was very clear that I should take a vit D supplement of at least 400IU/day for life after the high dose course is finished, and has written a prescription for it.

If you feel you want to continue taking a supplement, it is available over the counter and has low toxicity in the doses available from UK pharmacists, so you are in very little danger of doing yourself any harm - you can check this yourself in the literature and speak to a pharmacist if your GP is not helpful.  

Could you ask for 6 monthly checks on your vit D blood level to check how it is holding up and decide whether you want to take/increase/reduce/stop any supplement?  

The papers I have been reading suggest it takes between 3 months and a year or more to fully heal the skeleton after vit D deficiency osteomlacia. Personally, I have found the guidance of Dr Michael Holick, a world recognised expert in vit D with a huge body of peer reviewed research to his name, extremely helpful, and amusing (laughs sorely needed at this time). His lectures are available on YouTube.  

Do you mind me asking if any of your fibro symptoms have lessened in the 3 months since you started D'ing? This was also my diagnosis 6 years ago. So desperately want to hear that we can get past this! 

All best wishes. :-)

Thanks penny 

Hi Penny. Thanks for joining the discussion. Do you mind me asking how far down the road you are with your diagnosis and treatment? Is your physio for problems associated with osteomalacia, and does it help? So many questions! My apologies, but apart from a prescription for Vit D I have very much been left by my GP to get on with this on my own. Gawd bless 'im, he did actually find the lurking vit D problem where at least 5 others have failed, but he is not much of a talker and clearly very busy in the practice. I have read that joints can become permanently distorted due to osteomalacia and my mobility is severely reduced. I'd be interested to know if physiotherapy is something I/we can ask for... Your experience much appreciated.

Hi Jaybelle, I'm now 66 yrs old had initial symptoms started on and off from 1989 mainly slow squeezing muscle pains, stiff ankles, legs, lower back. Used to swim and do aquarobics 2-3 times a week. From mid 1990s my symptoms became more frequent I assumed down to stress at work. All bloods etc normal. We moved to Devon then my husband involved in RTA - untreated whiplash Disabled/Depressed/Memory probs. My symptoms worsened - I asked for check PMR - again all bloods normal - I was deemed healthy - apart from my weight creeping up every year.

4 yrs ago I started find walking difficult. Unable carry shopping from butchers/baker to Carpark. Unable to walk at my usual pace - 15min per mile. Tired. Stiff from low back to feet. Orthotics to support high arch helped a short while. Walking climbing up/down hills or stairs increasingly hard Annual visit to Dr - no change - bloods all good. Tired VERY SAD - almost depressed - poor sleep ache now all over - a moving feast. Squeezing rhythmical cramp like pain down both thighs - hard relax in bed- night sweats. Then found r leg would collapse when walking. Assumed all part of normal ageing?! 

Due to depression and winter sadness I had started to take Vit D as I read that many of  us have low levels. Especially the over 69s. So took it each winter for 3 yrs. 

Went to Dr again asked referral for physio - he said r thigh muscle wasted. Physio gave me exercises Told me some osteoarthritis in hip. I COULD NOT DO prescribed exercises. Eventually passed on to hydrotherapy - slowly became worse - had VERY dry skin, developed dry mouth, dry eye - dentist & optician suggested Sjorgens Syndrome. Asked Dr at this stage to refer me to Rheumatology as I so weak not coping and felt so poorly - blood tests All OK  - I was healthy - however ill,I felt. Began to think it pyschosomatic! 

Rheumatologist was very thorough. 1st medic in 25 years to examine me head to toe, listen to chest heart etc etc X-rays, blood & urine tests. Due to history of malignant melanoma 1979 checked whether I had any cancer.

Final diagnosis was slight osteoarthritis right hip some aneamia in that HB levels good but the HB cells are small and pale & very low VitD - this when I'd been taking VitD& Magnesium for 2yrs. Told me if took Vit D my body make better use of calcium. I too tired ask more but after chat with GP did my own research My husband has so many free meds on prescription I more than happy buy own supplements. Buy Over counter Vit D & Magnesium, K2,  a good multivitamin/mineral Also take subliminal Vit B12. Taking VitD 25úg x 4 per day as recent blood test when I went down to one pill per day is only just in the adequate range. They do say the fatter a body the higher the dose needs to be . . When I started on the higher dose about this time last year the squeezing aches in legs went quite quickly - sleep started to improve. Weight started to drop - no change in diet. 

I by this time had been discharged from hydrotherapy! Still felt weak etc. walking with a stick to support collapsing r leg Stiff hands aching arms At one point walking around indoors with 2 sticks. 

Finally went to private physio. Told him exercises I been given I couldn't do them as R leg felt longer than left. Some hands on manipulation over 3 sessions cured that problem ! He gave me some easier exercises to try. Slowly over several sessions he homed in found most of my leg problem stems from lower back muscles (couple of old injuries in my 20s) and an overtight abdominal muscle which had stopped me engaging my core muscles properly. My R leg slowly started to feel a part of the rest of my body I stand more upright and have altered my walking stick to lengthen it by 5 inches. Manipulation has been painful but worth it "no pain no gain" 

in January started TaiChi - it helps my balance and r leg beginning feel a bit more flexible. A few times I managed walk down stairs (with stick & handrail) properly rather than dot and carry one. It varies but every little improvement leads me to hope that I will improve. 

It's  been a hard winter in that had a bereavement (comfort eating) builders in to adapt bathroom suitable disabled use and numerous hospital appts for my husband (I main carer) I took my eye off the ball on keeping up with Vit D etc - weight crept up again and sleep not so good Inassumed stress.  But once I had latest blood test result from City Assays - Birmingham  I realise just how much I need to maintain high levels. Can already feel the difference again . . 

Now as to joints I had hammer toes developing From stretches I found on the Internet my left toe is now almost normal My right toe needs more work. My private physio tells me to exercise and gently stretch muscles/joints when they are not painful But if it hurts ignore it that day Work on another area. Some days I hurt all over - he thinks it may be weather related. On those days I rest but keep moving gently every hour however stiff I feel. TaiChi has helped me to consider moving my body in a totally different way. It has helped my thigh muscles more than any other exercise. I live in hope . . . . 

Another thing  that helped me a great deal - I used to have night sweats but skin on limbs felt very cold to the touch. . My bedroom North facing cold and damp. Roof leak made it worse. I bought an elec duvet. It amazingly relaxing to get into a very warm bed. I keep it on the lowest setting all night. I no longer have night sweats. Read somewhere how limbs need to be warm enough for core temp to drop to aid sleep . . If limbs are cold body sends heat to core . . So if my understanding is right is worth thinking about for all those having night sweats . . .

Lordy, Penny! Like so many of us, it seems to have been a long, slow diagnosis for you ...and long slow - and bumpy - road to recovery. 

Funny about the electric blanket - for the first couple of years after my initial crisis in 2010 I found a heated bed absolutely invaluable. It almost couldn't be too hot, baking the pain out of my back and limbs. 

I agree that D def/osteomalacia is very sensitive to the weather. I also find that sleep (amount and quality of) significantly affects pain and fatigue levels, prementstrual hormone changes and any kind of infection. The mildest rhinovirus or hint of a sore throat will send me right back into what I call 'ten rounds with Tyson'!

My skin is also ridiculously dry and flakes off so much that I have to find the energy to vacuum my bedroom at least twice a week due to the snow of skin on every surface. But I had assumed that was down to my thyroid probs that were diagnosed about the same time as the vit D. What happened about your Sjogren's symptoms, etc? Nothing come up for your thyroid? Because those symptoms do sound consistent with an autoimmune disorder, don't they? 

Anyway, many thanks for sharing your D deficient journey with us. Just maybe I'm not nuts after all - unless we all are! 

Take care, and all best wishes. :-)