Vitamin D and Sarcoidosis

• By gtp1164 (Inactive)
• Reply 3216737
• July 16, 2012 at 8:51 pm
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what was ur symptoms?? how did they find out you had this? what test were done?
hope you feel better

• By heidiwalters72
• Reply 3216927
• July 16, 2012 at 10:25 pm
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is the rash getting hard nodules? It may be a rash caused by Sarc or it could be a weird reaction. Best way to go is see a dermatologist especially if antibiotics dont respond you may need a broad spectrum antil like clindamycin or levaquin. Especially if it starts to look like cellulitis. Good luck

• By priscurl
• Reply 3217392
• July 17, 2012 at 6:26 am
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Hi Judyj2009,

I don't know why you would get a blister like rash from taking D or abx. Could you be allergic to the antibiotics? or did the rash come on before you started these. I would suggest you see a dermatologist for a biopsy. Sarcoid can do anything and vitamin D can exacerbate sarcoidosis. Get the biopsy before stopping the D unless the symptoms become unbearable.

Hang on, 2000mg of D??!!!!!!! Are you sure it is mg or ug (micrograms) or IU for international units. 2000mg is 50,000 IU of D. This can be a dangerous dose for a person with sarcoidosis. 2000 IU would not be so bad and I would suggest continuing to take it while you get a biopsy of the blisters. I have never heard of D causing a blister like rash, but I do know that some diet and fitness guru had a formula knocked up and put on the market. The company making the diet shake put in too much D and the diet guru's feet began to bleed and the skin began to peel off them. He ended up getting severe hypercalcemia and is suing the company who produced his diet shake for putting in too much vitamin D in it.

Sarcoid turns D into the hormonal form of vitamin D. I suggest you get this hormonal form of D called calcitriol or 1,25D tested along with parathyroid hormone. If the first is high and the second low, stop taking the D immediately, as it can lead to hypercalcemia, severe osteoporosis, kidney stones or kidney damage. This problem is part and parcel of sarcoidosis and many doctors, including specialists are unaware of it. Newer doctors still training are aware of it. I had three young doctors come to talk to me about sarcoidosis while I was in hospital and all three knew about vitamin D and sarcoid. Many older docs don't know of the problem of D and calcium dysregulation caused by sarc. Not everyone gets it, but if you have systemic disease, it is possible you do have it. Vitamin D levels are often driven to low amounts by the parathyroid gland in order to prevent too much calcium going into the blood stream where it can reach toxic levels. This is because the sarcoid is producing too much hormonal D by enzymatic action. People without sarcoid only produce this hormonal D in the kidneys which also regulate the amount of hormonal D made. The sarcoid tissue can't regulate the amount like the kidneys do, therefore, the body has to shut down D production at the liver via a hormone from the parathyroid gland. This protective shut down is often read as a D deficiency because doctors don't know there is also a hormonal form of vitamin D known as calcitriol or 1,25D or that the hormone which regulates D production is the parathyroid hormone. When their is a D or calcium deficiency, the parathyroid gland will send out its hormone in order that the liver produces more D3 from D precursors. However, in sarcoid, because there is so much calcitriol overproduction by the sarcoid granuloma, the parathyroid stops producing the hormone to stimulate D3 production in the liver. All D3 which the sarcoid granuloma can lay hands on is turned into calcitriol which can wreck havoc in a sarcoid patients body.

Pris

• By Ave_
• Reply 3218575
• July 17, 2012 at 2:16 pm
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I had a low vitamin D 25 OH level of 11. Therefore, two of my doctors told me to take supplemental vitamin D....2,000IU per day. I also began spending maybe 15 minutes a few days a week in the california winter sun without sunscreen. My sarc doctor was very upset that I had been told to take any amount of vitamin D supplementation...citing cases where sarc patients developed vitamin D issues after vitamin D supplementation. My:

vitamin D 25 OH
vitamin D 1,25
24-hour urine calcium
serum calcium
PTH
albumin

were then tested. My 24 hour urine came back high for calcium = hypercalcuria. My vitamin D 1,25 came back high and my vitamin D 25 OH had moved into the "normal" range. I didn't really have any symptoms except increased anxiety. I had been tested a year prior for all these values and they were normal except for the low vitamin D 25 OH. What was missed was the fact that I was on 40mg prednisone at the time and therefore the normal values could be attributed to that. The vitamin D issues most often arise in sarcoidosis patients in the spring and summer because of the increased sun exposure.

Pris is right....it makes sarc worse....she has advised many people here on this issue. If you think that vitamin D is the issue then I would stop taking supplementation (it won't cause harm to stop for a few weeks but if it is the cause, it can do more damage). Milk and milk substitutes that have added vitamin D and sun exposure shoule be avoided if high vitamin D 1,25 is the cause. If you can get in to see your doctor, you can get the serum values right away while you are performing the 24 hour urine...you should be able to find out within a few days. If you ask your doctor to write the lab order where the patient can see the results, then you can get the values even sooner. I am sorry you are having to deal with this. I hope they find out soon what is going on.

• By priscurl
• Reply 3219499
• July 17, 2012 at 8:45 pm
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Hi Ave-,

That is most interesting the results you got after D supplementation. Anxiety is definitely a symptom of hypervitaminosis D. I have funny attacks when D is high, but I only ever get them in summer - never in winter. I have been getting them since I was 19. I am D sensitive and have had a real battle with sarcoid over the last two years because I did a diet shake during summer to lose weight (during the second year I was on prednisone) and the shake had a tiny amount of D in it, but it was enough to cause mild hypercalcemia with vomiting both times. My calcium hovered around the upper limit of normal during summer both years.

Pris

• By Ave_
• Reply 3221701
• July 18, 2012 at 4:12 pm
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Pris,

Wow...you have been dealing with this for a while. I am sorry to hear that it caused you to vomit....I can't imagine how infuriating that would be later to realize it was the shake. I have read two stories about dairies adding too much vitamin D to their milk...one mistakenly added around 50,000 IU per serving and it caused multiple individuals to get hypercalcemia....patients ranged from cured cancer survivor to diabetic to a baby and a few others. Another story involved a home delivery dairy....will post if I can find them again. For a long time, I have purchased whole milk from strauss creamery because there is no vitamin D added to their products. I chose whole milk because it has less sugar and more vitamins than lesser fat versions. Then my doctor just put me on no gluten/dairy for stomach issues. I was taking fish oil when my vitamin D went up....it had no added vitamin D and I wrote the company who responded saying the fish oil didn't have any vitamin D in it...natural or added. But the company sells other fish oil products with added vitamin D. I wonder if the 2,000 IU vitamin D supplement truly was only 2,000 IU. Although my sarc doctor seemed concerned re: any amount of vitamin D supplementation for all sarcoidosis patients. Now that my 1,25 is normalized, another sarc doctor wants me on 800 IU vitamin D....that makes me way to nervous....I think it would be healthier to add fish/egg yolks back into my diet before supplementation....I don't think I could ever go back to that.

With your shake story and other stories...it shows the need for the FDA to decree that companies must have any vitamin D supplemented products sent to 3rd party testing on a regular basis to make sure the levels are as advertised. Almost all innocuous substances become dangerous at high levels even to a healthy individual. An article came out citing a doctor from UCSF.....stating that calcium and vitamin D supplements given to healthy women did not prevent fractures related to osteoperosis and the doctor goes on to say that there is a small but real risk for kidney stones....for healthy women!
http://www.nytimes.com/2012/06/13/health/calcium-and-vitamin-d-ineffective- for-fractures-us-preventive-services-task-force-says.html

Many studies/sarc websites state calcium issues are in 5-20% of sarc patients and I have seen hypercalcuria range from 15-65% and reduced bone density up to 55% of sarc patients. This is based on many sarc patients being treated by doctors who are totally unaware of vitamin D issues in sarc. What a range...it underscores how they don't have a handle on this. I wonder if sarc is more than one disease and I wonder (doubtful) if anyone has performed a study for the common features of patients with vitamin D issues.

• By Ave_
• Reply 3221720
• July 18, 2012 at 4:21 pm
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Pris,

One last thing....do you happen to have any good links for the hypervitaminosis D - anxiety connection? The doctor that told me to take vitamin D initally....noted how much my anxiety had increased since my last visit (when I began supplementation). I am no longer seeing her and have thought about sending her some studies re: vitamin D and sarc...and the anxiety.....just to educate her. Thank you.

Ave

• By Ave_
• Reply 3221790
• July 18, 2012 at 4:49 pm
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Couldn't find one of the links....sorry if the following is too much....there was more but I don't have the time. I'm sure Pris has already seen most of this. Thought it was interesting....

Vitamin D intoxication with severe hypercalcemia due to manufacturing and labeling errors of two dietary supplements made in the United States.
http://www.ncbi.nlm.nih.gov/pubmed/21917864

Life-threatening complications of vitamin D intoxication due to over-the-counter supplements.
http://www.ncbi.nlm.nih.gov/pubmed/20515399

Hypervitaminosis D associated with drinking milk.
http://www.ncbi.nlm.nih.gov/pubmed/1313547

An outbreak of hypervitaminosis D associated with the overfortification of milk from a home-delivery dairy.
http://www.ncbi.nlm.nih.gov/pubmed/7733425

Severe hypercalcemia following vitamin d supplementation in a patient with multiple sclerosis: a note of caution.
http://www.ncbi.nlm.nih.gov/pubmed/22232355

Combination of calcitriol and dietary soy exhibits enhanced anticancer activity and increased hypercalcemic toxicity in a mouse xenograft model of prostate cancer.
http://www.ncbi.nlm.nih.gov/pubmed/22457201

• By leleroxit
• Reply 3222402 · In reply to 3217392 by priscurl
• July 18, 2012 at 8:52 pm
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Hi I just saw your post about vit D..I'm deficient and have been given ergocalcifier 50000U CAP once a week for 12 weeks, I don't have an official dg of sarcoid but have dr. apt soon....is this a bad ideas to take this medicine if you have it?

• By priscurl
• Reply 3223107
• July 19, 2012 at 4:47 am
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Hi Ave_ and Leroxit,

Yes D and sarcoid are not always a safe combination.

I read about some super sunshine D product being imported into the USA from Cuba or Honduras or somewhere. It could be bought off the self in supermarkets. It had some horrendous amount of D in it. When labs tested the product it had way, way over the stated amount on the packaging. NYC ERs were treating lots of cancer patients coming in after taking this product with hypercalcemia. There were also people who had mild undiagnosed hyperparathyroid tumors who developed severe hypercalcemia after ingesting this product.

Pris

• By LADY1015
• Reply 3226616
• July 20, 2012 at 11:16 am
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I am interested in the Vitamin D connection with kidney stones. I took 50000 units in 2010 and ended up with kidney stones. I have suffered for 2 years with them and finally got rid of them. Saw my endo doc yesterday and vitamin d low again (22) and she wants me back on the 50k units.I told her that I read that you can get kidney stones from large doses and she said no. I had even brought the articles with me and she was not interested. I was Really ill with stones last month and do not want to go through that again. I guess I need to find another doctor.

• By Ave_
• Reply 3227239
• July 20, 2012 at 3:14 pm
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Lady1015,

I was told by a local endo and pulmonologist to take vitamin D. Then I had problems and went to an endo at UCSF (higher quality of doctors than locally). They said no more supplements for me...sarc patients have issues with vitamin D....the local doctor is still clueless. The important thing is to find an endo who is aware of the 2 types of vitamin D and the extrarenal production of vitamin D 1,25 in sarcoidosis. A good endo will test for:

vitamin D 25 OH
vitamin D 1,25
24-hour urine calcium
serum calcium
PTH
albumin

Did your endo do a bone density and ultrasound of your kidneys (to check for calcification)?

• By Ave_
• Reply 3227241
• July 20, 2012 at 3:15 pm
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Pris,
Interesting story.

• By LADY1015
• Reply 3227347 · In reply to 3227239 by Ave_
• July 20, 2012 at 4:02 pm
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No, but the urologist has ordered a 24hr. urine and a parathyroid test plus I just an ultrasound of my kidneys. I did have a bone density a couple of years ago but never go the results. I assume my bone density was fine.

I think the endo ordered 2 kinds of vita. d tests but the lab has the slip so I will know more when I get the bloodtest results next week. IN the meantime, I am holding off on any Vit. D until I learn more about their relationship to kidney stones. I did read an interesting article about celiac and kidney stones.
http://glutenfreeworks.com/blog/2010/11/17/kidney-stones-renal-calculus-cau ses-treatment-in-celiac-disease/

Also a discussion on celiacs with kidney stones. http://www.celiac.com/gluten-free/topic/79392-kidney-stones-linked-to-celia c-disease/

• By Ave_
• Reply 3227579
• July 20, 2012 at 5:44 pm
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Vitamin D 1,25 (a hormone, not technically speaking a vitamin) signals your body to increase calcium so the more vitamin D 1,25, the more your body is being signaled to produce calcium. If you had a normal vitamin D 1,25 then the body would signal your body to maintain the appropriate level of calcium. Calcium is either absorbed through your gut (food) and released into your body that way or it can signal your bones to release calcium that is stored in the bones. They test your bone density because of prednisone use but also to make sure that the kidney stones didn't form from calcium that was released from your bones and therefore weakening them. Your body gets rid of excess calcium through urine...causing kidney stones. If calcium is elevated in the blood, there is the potential for calcium deposits in your organs and not just kidney stones.

There are articles back to the 50's correlating kidney stones and sarcoidosis. It seems that most research hospitals are well aware of the issue with vitamin D and sarcoidosis. Doctors recently out of med school tend to know this. Usually the issue is with doctors who have been practicing for a while and/or who are not interacting with research centers. Sarc doctors attempt to treat it first by reducing your exposure to vitamin D through food and sun exposure and by reducing excessive amounts of calcium in food...often medication is unnecessary except for severe cases.

Vitamin D, calcium, and sarcoidosis.
http://www.ncbi.nlm.nih.gov/pubmed/8620732

Calcium and vitamin D metabolism in granulomatous diseases.
http://www.ncbi.nlm.nih.gov/pubmed/1582115

Resorptive versus absorptive hypercalciuria in sarcoidosis: correlations with 25-hydroxy vitamin D3 and 1,25-dihydroxy vitamin D3 and parameters of disease activity.
http://www.ncbi.nlm.nih.gov/pubmed/3838815

A role for endogenous arachidonate metabolites in the regulated expression of the 25-hydroxyvitamin D-1-hydroxylation reaction in cultured alveolar macrophages from patients with sarcoidosis.
http://www.ncbi.nlm.nih.gov/pubmed/2106525

[Hypercalcemia in sarcoidosis--case report, prevalence, pathophysiology and therapeutic options].
http://www.ncbi.nlm.nih.gov/pubmed/17685088

• By priscurl
• Reply 3228412 · In reply to 3226616 by LADY1015
• July 21, 2012 at 2:02 am
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Lady1015,

Kidney stones are the thin end of the wedge. Anyone who has kidney stones and sarcoid should never take vitamin D supplements. If this doctor insists she is right when medical science states emphatically that she is wrong, you have to part company or your health will suffer.

I have fallen foul of trusting the medical profession on numerous occasions and nearly lost my life over it. You have to be prepared to doctor shop and advocate for yourself. Sometimes you even have to resort to tricks to get what you want. My doctor even gives patients tips on how to do it. So don't feel guilty about this ignorant doc and not following them. Believe me, if you follow them, you will only suffer more. It is time for you to stop suffering now and find a more knowledgable doc. When I was in hospital I got to educate three young docs for an hour each on sarcoidosis and vitamin D problems. One of them was so interested, he stayed longer than his alloted hour. The younger docs coming through the system now are more aware of it and less ignorant.

Pris

• By priscurl
• Reply 3228414
• July 21, 2012 at 2:06 am
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Well said AVE

• By Psalm11817
• Reply 3228625 · In reply to 3219499 by priscurl
• July 21, 2012 at 7:49 am
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yes it can make you vomit read before you eat or drink sarcoidosis take over but you have to be in charge of it .

• By Ave_
• Reply 3234342
• July 23, 2012 at 3:48 pm
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Pris,
Thanks for all your postings re:vitamin D...you have increased awareness and helped many including myself.

• By SunShadow
• Reply 3236042
• July 24, 2012 at 9:11 am
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My first posting....Pris or anyone else out there have a good link to an article detailing the Vit. D --Sarcoidosis relationship. I need to bone up on it (no pun intended) and would like to get a good article that I can peruse and that I can also take in to my doc. Thanks!