Friday, 26 August 2011

If you have Sarcoidosis, you must stay out of the Sun

A macrophage ingesting pathogens.Image via Wikipedia

This post is credited to Trevor Marshall.  
One of the topics that has often been too much of a "hot potato" to talk about is the extreme sensitivity of many sarc patients to sunlight, and the Vitamin D it produces in our skin.

I am not talking about UVA or UVB or sunscreen or sunburn, I am talking about hormones being produced that play havoc with your body and mind.

This is not a newly discovered phenomenon; it was detailed in 1950 by Scadding and in 1954 by Anderson. In 1968 a paper by Winnacker, et al, reported that sarc patients can be 20 times as sensitive to sunlight and dietary Vitamin D as the 'normal' population, in fact, only 9000 IU of Vitamin D was a toxic dose to some sarcoid patients, whereas 'normal' people could take in in 150,000 IU without a problem. Scadding (in 1950) reported that some sarc patients were intolerant to any dosage of Vitamin D at all...

"25 hydroxyvitamin D" is produced as Sunlight strikes the skin. It is also produced after consuming Vit D from an artificial food source. This is then converted to 1,25 dihydroxyvitamin D3, the active Vit D hormone in our bodies. 

Most importantly, we now know that 1,25 dihdroxyvitamin D3 is secreted by the inflammatory macrophages that make up granuloma. It is a cytokine, and it has an essential task in maintaining the number of monocytes, which make up the macrophages, by catalysing the hematopoetic Stem Cells to produce monocytes.

In the past I personally have stated that I believe it is a major cause of sarc relapses, and I have been ridiculed and pilloried for holding that opinion. However, the evidence is becoming overwhelming. Researchers are now starting to document and explain the hormone's key role in the formation of granulomas, and as an element of the immune system. So you will read more and more about this hormone as the research results come in.

Meanwhile, The Canadian Lung Association has now joined National Jewish in warning sarc patients to stay out of the sun: "If you have sarcoidosis, it is best to avoid too much direct sunlight. Vitamin D sensitivity may occur with sarcoidosis, and excessive exposure to sunlight can result in increased calcium in the blood which may in turn produce kidney damage"

Blood may be drawn to test the level of 1,25 Dihydroxyvitamin D3 in your body at any doctor's office in the USA. This is the only test that can tell you if you are having this problem, although you need to have your 25 Hydroxyvitamin D measured at the same time, for comparison. It used to be thought that hypercalcaemia was the only result of excess Vitamin D, we now know it is far more complex than that. Many otherwise normocalcemic sarc patients have been suffering from kidney stones and calcium deposition into the soft tissue as a result of excess levels of this hormone in their tissue. We can only measure its level in the blood, which is still an approximation, but the best we can get.

It is almost impossible for most sarc patients to realize that exposure to sunlight is making them ill. This is because the time taken to generate monocytes and for the 1,25 dihydroxyvitamin D3 to clear your body, is a matter of days, not hours. If you are exposed on Monday you will still be suffering on Wednesday. Very difficult to correlate cause and effect. Signs of mild Vit D toxicity include hard stools, constipation, metallic taste, "weakness, headache, muscle pain, bone pain, somnolence (sleepiness), nausea, vomiting, dry mouth, constipation, polyuria, polydipsia, anorexia, weight loss, nocturia, conjunctivitis (calcific), pancreatitis, photophobia, rhinorrhea, pruritus, hyperthermia, decreased libido, elevated BUN, albuminuria, hypercholesterolemia, elevated SGOT and SGPT, ectopic calcification, nephrocalcinosis, hypertension, cardiac arrhythmias and rarely, overt psychosis" and facial paralysis.

Excess amounts of 1,25 Dihydroxyvitamin D3 can result in bone resorption. This means that your bones and teeth can be absorbed into your blood stream and then be deposited into soft tissue, such as the lungs (and kidneys). Sarc patients should avoid all Vitamin D supplementation unless you have been tested to have normal values of the hormone. Here is an explanation for you to discuss with your doctors explaining why sarc patient's metabolism is different. As if the osteporotic side-effect of prednisone wasn't enough, we now learn that sarc patients may also have to contend with bone wastage due to the inflammatory biochemistry itself.

Finally, I have observed that sarc patient's eyes have to be shielded from bright light by wearing dark shades. 1,25 Dihydroxyvitamin D3 interacts with the cornea in ways which are yet to be fully explained.

Keep smiling,..Trevor.

Endocrinol Metab Clin North Am. 1989 Sep;18(3):765-78.

Vitamin D metabolite-mediated hypercalcemia.


University of Southern California, School of Medicine, Endocrine Research Laboratory, Orthopaedic Hospital, Los Angeles.


The endogenous overproduction of active vitamin D sterols plays a central causative role in the hypercalcemic/hypercalciuric state associated with granuloma-forming diseases, most notably sarcoidosis, as well as with some human lymphomas. In sarcoidosis, the offending metabolite is most likely 1,25-(OH)2-D and the synthetic source is the disease-activated macrophage. About 50% of hypercalcemic patients with lymphoma harbor frankly elevated or inappropriately high serum 1,25-(OH)2-D concentrations. The source of the hormone in patients with lymphoma is not yet known. The endogenous synthesis of 1,25-(OH)2-D in patients with active sarcoidosis and lymphoma is not subject to regulation by those factors that normally control the production of 1,25-(OH)2-D by the renal 25-OH-D-1-hydroxylase. Treatment and prevention of vitamin D metabolite-mediated hypercalcemia/hypercalciuria consist of pharmacologic inhibition of the abnormal 1-hydroxylation reaction and limitation of substrates for the reaction. The former is best accomplished by the administration of anti-inflammatory concentrations of glucocorticoids and the latter by controlling vitamin D intake and sunlight exposure in susceptible hosts.

[PubMed - indexed for MEDLINE]

Trends Endocrinol Metab. 2002 Apr;13(3):100-5.

New clues about vitamin D functions in the nervous system.


INSERM ERIT-M 0104, 10 rue André Boquel, 49100 Angers, France.


Accumulating data have provided evidence that 1 alpha,25 dihydroxyvitamin D(3) [1,25-(OH)(2)D(3)] is involved in brain function. Thus, the nuclear receptor for 1,25-(OH)(2)D(3) has been localized in neurons and glial cells. Genes encoding the enzymes involved in the metabolism of this hormone are also expressed in brain cells. The reported biological effects of 1,25-(OH)(2)D(3) in the nervous system include the biosynthesis of neurotrophic factors and at least one enzyme involved in neurotransmitter synthesis. 1,25-(OH)(2)D(3) can also inhibit the synthesis of inducible nitric oxide synthase and increase glutathione levels, suggesting a role for the hormone in brain detoxification pathways. Neuroprotective and immunomodulatory effects of this hormone have been described in several experimental models, indicating the potential value of 1,25-(OH)(2)D(3) pharmacological analogs in neurodegenerative and neuroimmune diseases. In addition, 1,25-(OH)(2)D(3) induces glioma cell death, making the hormone of potential interest in the management of brain tumors. These results reveal previously unsuspected roles for 1,25-(OH)(2)D(3) in brain function and suggest possible areas of future research.

[PubMed - indexed for MEDLINE]

1,25 dihydroxyvitamin D3 was erroneously named as a vitamin when it was first discovered. But it has now been recognized to actually be a hormone, with functions of a cytokine (an inflammatory agent) and is essential for maintaining the production of monocytes and macrophages from the hematopoetic stem cells. There is a paper, "Vitamin D as a Cytokine and Hematopoetic Factor", which talks a little more about this sterol hormone. It should be available in your local med library.

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