Vitamin D and Sarcoid

Well finally saw my md today...as predicted LOW vitamin D levels (19)...als as predicted he wants me to start Vit. D supplements to help with symptoms. My concern is this....for the 1st time in 4+ years my sarcoid has been somewhat dormant. My lungs have been clear, I can take a deep breath and not start coughing. I have read that VitaminD can "aggravate" sarcoid....... Which do I learn to live with....sarcoid or symptoms of low Vitamin D.......any suggestions would be appreciated.

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My vitamin D level has been at 12 for the last 5 months and am on 50000 UI of the stuff to raise it ( I hate taking pills and its a once a week pill at that so sometimes I miss it.....that is prolly why it has been so low for so long). Even taking the stupid pill ( plus calcium supplements WITH vitamin D in them for the prednisone they had me on) I didn't notice my sarc symptoms getting better or worse. I am off the prednisone (Yay) and the symptoms are coming back (noooo! Prednisone is evil!).
I think every person is different when it comes to sarcs ( there seems to be so many different ways this stuff can hit a person). I say try the vitamin D ( unless someone else on here who is more knowledgeable states otherwise.....I saw some posts on Vity D and how that would NOT be a good thing for sarcs however my memory is goldfish like at times). If it works for you go for it. If it makes it worse then drop it. Just my thoughts on it.

GK

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Thanks.....I will probably start the vitamin D and wait and see !!!

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You could sit in direct sunlight for 20 mins. a day, so your body could produce Vitamin D on its own. Just don't stay out too long, or you could run into inflammation problems.

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That depends on where you live. I'm in WA state.....we are The EverGreen State and it's not because of our allotment of sunshine lol! We are NOW just getting our summer ( the temps and sunshine we have now should have happened about a month or two ago). If you live in a state like I do ( where either the state is allergic to the sun or visa versa) then maybe you can go to a plant shop and get one of those UV lights to simulate sunshine for those types of plants that need it ( someone half jokingly suggested that to me and I thought maybe it may not be a bad idea if it worked.....and if it meant one less pill to nom nom nom on).

GK

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I was seeing a naturopath for a while becasue I too wanted to avoid meds as long as i could. She told me not to take vitamin D bacause sometimes people with sarcoidosis have too much vitamin D. Hmmm. I guess that is not always the case. Thanks for sharing, Much appreciated.

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Jm & kitty,

Be VERY careful, most sarcies are not low on vit D persay, did your doc only do the common D measurement(25D) in us sarcies our disregulated system converts all this std D into 1-25D (the hormone form the body uses it in, this is usually abnormally high in relation to the 25D measured) the 25D measurement is the reserve left so to speak- low in sarcies because our system doesnt cut off it will convert all D given to it, calcium can be very dangerous here too. If your doc has not got this knowledge/off pat he can actually cause you serious harm even kill you, most def/easliy cause your sarc to flare. Do a search top right here on vit D and sarc. Read plenty, it is scarey but common that lots of docs dont even know this basic knowledge.
Now some here may say `everyone is different/effected different, i am speaking about the vast majority of sarcies, now if on pred -it will regulate this, also i believe in early stages, less severe cases, or with different systems effected some sarcies will be more tolerent, but this will change with most as time and their disease progresses, so i would say to them its worth keeping a very close eye on. Good point listed above there about sunlight- it has been medically proven that daylight on only 19% of our skin area for 15 mins is enough to produce vit D to last for days. Doctors were taken in by the big vit D sales hype years ago, actually now some of these manufactures are printing on their labels `can be very dangerous if taken by someone with sarc`.

I do hope that helps some, just research and read plenty.
Best wishes
Z

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Hi Jmariek1,

A D of 19mg/ml could well be a deficiency. If you D was under 10 ng/ml I would be more concerned this was D becoming low because of the rapid conversion of D into 1,25D caused by an enzyme made in sarcoid granuloma. When D is under 10, this is often a red herring rather than a true vitamin D deficiency. My D is 8.5ng/ml. I DON'T have SYMPTOMS of vitamin D deficiency. No bone pain - nothing.

Some sarcies can tolerate up to 9000 mg of vitamin D a week. However, it is not recommended that sarcies take 50,000 IU of something like Drisdol a week. This is because such a high dose can precipitate hypercalcemia in a small number of sarcoid patients. It is recommended that a doctor eliminate a raised 1,25D level before putting a patient on such a drug if they have sarcoidosis. If the doctor will not do a 1,25D level, then you could have a PTH level and a PTH-rp level done. If the PTH level is suppressed and the PTH-rp is raised, it would not be wise to take such a high powered D supplement. In anycase, Drs should not be using Drisdol to treat uncomplicated D deficiency or osteoporosis. They are using it off label for these conditions. Drisdol was meant to treat rickets and osteomalacia and never meant to treat lesser degrees of deficiency. If the doc refuses to do these screening tests, you could try asking for a urine and serum calcium test. They should not refuse these. If both urine and serum calcium are normal, you can go on the D safely, but make sure the calcium tests are repeated on a monthly basis while you are on treatment. If serum calcium is raised, you most definitely should not take D or calcium. If urine calcium is raised, again, you should not take any D supps.

Princeton B put up a great article on hormones is sarcoid (1,25D is the hormonal form made from vitamin D which can go up in sarcoid and cause calcium disorders). I suggest you try to read and comprehend it and perhaps show it to your doc if need be. It is a British medical journal article.

Better to be safe than sorry. Although hypercalcemia in sarcoid can be quickly turned around with prednisone, it is not a very pleasant situation to be in. It can even normalise itself, so long as you go off D, but it does have repercussions for the body. Osteoporosis is only one of them, calcification of arteries and stuffing the kidneys with calcium are two things you don't want either, and this can happen with disordered calcium metabolism caused by sarcoidosis. It is more common than doctors allow.

Pris

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Whoops Forgot to POST THE ARTICLE Mentioned above.

http://qjmed.oxfordjournals.org/content/96/8/553.full

Pris

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Here is a blow up of a teaching slide mentioned in this article

http://qjmed.oxfordjournals.org/content/96/8/553/F1.expansion.html

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I am going to say this, some may agree and some may disagree, but spring of 2010, I was doing ok with my sark. the prednisone was keeping everything stable. all my tests in March were ok. then I started sitting outside an hour and a half on a daily basis and was taking cal with vit. D 2-3 times a day. come June, my sark had gone into my left eye and my lungs were showing new nodules.
so, the only thing I changed was the vit. D. Take it for what it is worth, now today, if I am out in the sun for 20 min. I end up sick as a dog and on the couch for two days. so you tell me, is it the D, the Sun or in my head?

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IMO-It is the increased Vitamin D caused by prolonged exposure to the sun.

Something similar happened to me. I was doing OK but with some symptoms (such as transient high calcium, high lipids, leg cramps, "asthma") that in retrospect, were from sarcoidosis but no one could ever diagnose me. After supplementing with Vitamin D, I began to experience extreme fatigue and chest soreness (like coming down with the flu) after spending hours working in the sun on a chicken coop. After staying in the house, I felt better and two weeks later, I resumed the work in the sun and had another episode of the fatigue and chest pains. About a month later I was diagnosed with a chest full of swollen nodes/sarcoidosis. I now recognize the chest pain as swollen nodes in my chest.

Since then, with the help of Priscurl and independent research, I have come to understand that Vitamin D is dysregulated in sarcoidosis, and IMO, poison to us. There is research that shows that even if you test OK on the calcium in the urine and blood, you are only testing in that small time period, and you could have elevated calcium at other times. Much of this will depend on how well you are able to regulate D, and you Vitamin D intake and sun exposure.

Our granulomas make their own D125. The D125 is used by the body to make more granulomas. Sweet set-up for the sarc. I have no intentions of feeding my granulomas with prolonged sun exposure or eating D rich/supplemented foods.

Thank you, Priscurl, for your tenacity in educating everyone on this issue over and over and over again. You have saved many people from a lot of suffering.

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Thank you for the article...printed and faxed to my MD...... I have started taking a Vit D supplement. I take 1000 mcgs 4 times a week. I will stop taking immediately if I feel anything relating to Sarc hanges. Thanks for all the wonderful and useful information !
Love Julie

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Hi Deedeedee,

I agree that with sarcoid, those analytes only fall into a window. From July last year to April of this years I was running back and forth to hospitals everyday visiting my mother, uncle and aunt. Mum was in hospital July till September and then went back in October to December. Then she was back twice a week for rehab until late January and another day in hospital in late January. Early March, my aunt went into hospital. She was only there a week and her husband went in. None of her kids lived nearby, so I had to do washing and take things to them in lieu of their own kids who all live at least an hour away. My aunt was in 6 weeks and my uncle in 5 weeks. He came home a week after his wife. Just driving 20 mins or half an hour each day in the sun was enough to make my 25D dive, 1,25D jump and it was a battle to keep calcium in normal range. It went above a couple of times and I had hyperphosphatemia until a couple of months ago. On the day my mum had to go in hospital for a day, I fell violently ill. I was vomiting the most bitter tasting stuff I had ever come across. I was weak and couldn't walk. I had a bitter taste in my mouth so intense it would choke me. I think this was the effects of frank hypercalcemia. I very nearly called an ambulance. I thought I had been accidently poisoned. My previous blood test has shown abnormal electrolyte levels so I was a little concerned about the vomiting. In the end, I did nothing, and it righted itself. The default position is normal and the body will strive for this whichever way it can. If this ever occurred again, I would get bloods done immediately. Even transient hyperphosphatemia which is part of the calcium normalisation process is not benign. It causes ectopic calcification, hardening of the arteries, heart arrhythmias etc.

Pris

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I am so sorry to hear you fell so ill, Priscurl. It sounds horrible. I use a long-sleeved light-weight UVA blocking jacket with a hood for driving, and golf gloves to block the light and it helps.

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Julie, you are making an error if you think you can always "feel" high calcium, especially as dramatically as Priscurl described. You might even feel BETTER on Vitamin D. Some people do--at least initially. Most of the time, you have no idea that the high calcium is over-taxing and damaging your kidneys and laying down calcium in your soft tissues, like organs and blood vessels. The internet is full of well-documented research that describes the problems associated with sarcoidosis and Vitamin D. Just google "research sarcoidosis Vitamin D" and you will see many, many articles. Most doctors have no clue prescribing Vitamin D to their sarcoidosis patients because THEY DON'T KNOW it is contraindicated. Since the big fad right now is Vitamin D, they see the low D and *poff* you are get a prescription.

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