Sunday, July 13, 2008

More on Vitamin D

Since I started having aches and pains in my hands and an occasional cramp in my foot, I went to the doctor to get tested for Vitamin D deficiency. I was sure that I was at least in the normal range because I am somewhat preoccupied with Vitamin D. My son Erik has renal osteodystrophy. He needs Vitamin D more than anybody. Since I had become knowledgeable and had researched the subject and had found out that the recommended dose should really be much higher than the 400 units found in vitamin pills, I had decided to take 1,000 units of Vitamin D/day.

My test came back with the doctor's note saying not only was I low, I was very low. The reading was 14ng/ml. The normal range starts at 30ng/ml with the high normal going up to 100ng/ml. The doctor prescribed 50,000 units once a week for 6 weeks. I was then to be retested. I did that and was retested. My reading this time was somewhat better at 25ng/ml but still low. I am now supposed to take again 50,000 units once a week, but this time for eight weeks. I am following his prescription to the letter. I am also getting the usual sun that I have paid extra attention to since my "fetish" with Vitamin D.

My son Erik was tested at Stanford Hospital for Vitamin deficiency in 1997. At that time his level was 11ng/ml. Guess what? He was found to be normal with that reading. Stanford's bottom of low normal was 10ng/ml. Top high normal was at around 50ng/ml if I remember correctly. Now by today's standards Erik would be considered very, very low and not normal at all.

The reason for this huge difference of what is considered to be normal is the fact that they didn't really know what normal was. The way "the normal range" was established was by taking measurements of all the people they tested in their lab. Then they took the lowest reading of persons without rickets, probably children, as their "normal." The fallacy of this way of thinking turns out to be that they measured a whole bunch of people that were really below normal because nobody understood what adult rickets (osteomalacia) was. Nobody at Stanford connected the fact that, maybe, the people who were tested for Vitamin D were in fact Vitamin D deficient. These, in terms of Stanford's lab's "normal", patients might have been diagnosed with broken bones, osteopenia, contractures, Legg-Calve-Perthes disease, slipped capital femoral epiphysis, osteoporosis, arthritis etc., but no doctor would have detected rickets or osteomalacia.

This lack of understanding put Erik into a wheelchair. It caused him to suffer through maybe as many as 30 broken bones. I wished he could talk so that he could relate to doctors what he has gone through. I for myself can tell when things are not right, and I am being taken care of because of what Erik has gone through.

The worst part is that we still don't have anything in writing telling a doctor who might take care of Erik in the future that he has osteomalacia or renal osteodystrophy or rickets or whatever other name you give this disease. Instead doctors repeat that he has cerebral palsy or spastic quadriplegia or paraplegia.


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