Has anybody else with APS also have a Vitamin D deficiency?

[MaryH]

[DorothyItaly]

Yes!!! Couldn't believe it as I live in Italy and am always in the sunshine. Dorothy

[MaryF Administrator]

Hello there. my young daughter has hughes and SLE like me... she has tested low for this, - I have a test next week, very common in autoimmune disease! Mary F x

[Sue2803]

I have been given vitamin D and Calcium tans

[panda60]

Me too - I have been on Vit D for three months as mine was seriously low. Having another blood test next week to see what level it is now.

Caroline

[MaryH]

Thank you all - there is a strange satisfaction in knowing that others are the same. I do not mean that I relish others feeling the same as I do, but at least you know you are not alone. My daughter has autoimmune problems as she has hypothyroidism and coeliac disorder. She has low calcium and Vit D levels. This site is so useful for us all and it makes us stronger to have shared problems and symptoms. Much love MaryHxxx

[kathyD64]

Hi guys it was a suggested test by my friends husband 2 yrs ago he is a neurologist however 2 yrs on no one has tested me but how good would it be that we can work towards a protocol so anyone presenting with auto immune condtions get tested routinely not leaving it to chance kathy x perhaps if i get to St T's prof K will test me x

[Jade in reply to kathyD64]

Kathy, I have to ask who is Prof K at St T's? I keep seeing you write it and I am curious. I only knew of Prof H at Tommys and now he is at London Bridge.

[TJSTICKYBLOOD]

Yes tested very low about four weeks ago on prescribed suppliments.

[daisy11]

Hello, yes it was very low as well and have been prescribed Vit D. I am wondering if my 16 year old daughter needs it too as being as the weather so bad and dark she is aching, getting down as well, she has APS and Lupus as well.

[InSpain]

Yes. I have SLE, Hughes, Arthritis, Aortic Insufficiency and just by chance they found out that I had a Vit. D deficiency. Thanks to a very thorough specialist he sent me for a bone density scan and they discovered that I have chronic Osteoporosis in my lower spine, left femur, wrists and neck. So I now am starting medication for this problem too. I would urge anyone who has been on long term steroid treatments, or who has Vit D deficiencies to ask for a bone density scan - I would not want anyone to live with the pain that I live with if it could be prevented. Good Luck!

[Hidden]

Yes - vitamin D deficiency has now found to be common in nearly all autoimmune diseases including Hughes syndrome. The Haematology Department at Guy's now automatically screens anyone with Hughes for this, so make sure you get tested next time you get your bloods done.

[Jane-Martin]

Hi, I can't afford the blood tests and my medcal aid won't cover it. My specialist said he now automatically gives it to his patients with auto-immune diorders and who are fatigued, so am on it anyway. I would like to know my levels, but that will have to wait! Love Jane xx

[Jade]

I have been curious for ages about this and other vitamins too. As I have developed tinnitus I started studying it and found work suggesting 47% of tinnitus sufferers had B12 deficiency. I did once ask my GP about vitamin D but he said as I took cod liver oil I could not be low in it.

I am now trying to get a appt with a GP who may test me for iron, thyroid, vitamin D and B12.I have many symptoms of B12 deficiency.

My worry is often results are subjective and GP's want us to be well out of range not just a little bit before they will treat us.

[77tiger05]

Yes, and I take 10,000iu a day, believe me it really helps!!!

[panda60]

Me again! My dad is a retired physician and he told me that he once had a woman on the ward and they weren't sure what was wrong with her - turned out her vit D levels were way too high!

I am on a high dose and my GP is testing me after three months.My level was seriously deficient and it will be interesting to see what it is next time. It seems that there is a definite link with autoimmune disorders but may I suggest that it's not a good idea to take over the recommended dose without checking first with your GP.

Caroline

[SharontheSheep]

Hi there

I am seriously deficient and am now, after problems with the health authority and funding, am taking 20,000 uls every 4 days. Should retest in a couple of weeks to see if there's an improvement.

Sharon x

[Jade]

OK I see, I was under the impression that only Prof Hughes was a prof, I thought Dr Khamasta was just a Dr at the moment.

[Suejane]

HI,

What are the symptoms of a vitamin D deficiency?

Sue

[hasmoxie2]

YES!! and I live in Florida! Hmmmm...??debi