The Sarcoid Life: 1,25 dihydroxy-vitamin D or The Things We Learn Whether We Want To Or Not!

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Another Boy Another Planet

There are times I’d like to be transported to another time, another place, another planet. The time specifically? Any time where I never had to deal with the mysteries of my body. Where life was lived and not examined—by myself nor a doctor.

These past several months have been a relentless drain on my health and my wellbeing—both physically and mentally. I’ve been dealing with lethargy, a fuzzy brain, and weight gain. Not to mention the emotional component of feeling out of control and ill for an extended period. I haven’t felt this bad since I first started going through the initial symptoms of Sarcoidosis and the two years it took to diagnose.

I’m not here to complain. I’m not here for sympathy. I’m here because there are really few places for me to go to try to get perspective on what might be happening now. I started this blog to document my travails with the diagnosis of my autoimmune disease Sarcoidosis (Sarcoid). Looks like I may be writing more—sooner than I might have thought.

I am also here because “the game is afoot”—again!

1,25 dihydroxy-vitamin D

I leaned something new the other day. Something that turned my world upside down—again! For many years I had told everyone, “I’ve been Sarcoid asymptomatic for over 4+ years”. Seems this might NOT have been the case. Was visiting my endocrinologist, Dr Smita Kargutkar, on Wednesday and we were going over blood work I had done before my visit with her. As she went through the results she said “I see your Sarcoid is active”. Huh??!!??!! What??!!??!! What in my blood work is telling you my Sarcoid is active again? “Your 1,25 dihydroxy-vitamin D levels are very high and your Vitamin D 25-Hydroxy levels are low. That tells me your Sarcoid is active.” My heart sank—like a torpedoed U-boat. It became very difficult for me to listen from that point on. But I did. And I asked more questions, though I got no real answers. Just more blood work to come, and more hypothesizing. Welcome to modern medicine!

Let the search begin …

So as a diligent researcher, I started my search. Combining the words “1,25 dihydroxy-vitamin D & Sarcoid”. Of course, I got multiple hits. Here is the bit that caught my attention …

Enhanced production rate of
1,25-dihydroxyvitamin D in sarcoidosis.

We determined the metabolic clearance and production rates of 1,25-dihydroxyvitamin D [1,25-(OH)2D] in 5 patients with sarcoidosis who had either hypercalciuria or hypercalcemia to examine whether abnormalities in the metabolism of this hormone existed. The mean MCR in the 5 patients with sarcoidosis [40 +/- 9 (+/- SD) mL/min] was similar to that in 13 normal subjects (37 +/- 6 mL/min) and that in 9 patients with absorptive hypercalciuria and renal stones (35 +/- 4 mL/min). However, the mean serum 1,25-(OH)2D concentration was significantly higher in the patients with sarcoidosis (211 +/- 60 pmol/L) than in either of the other 2 groups. The mean 1,25-(OH)2D production rate was markedly elevated in the patients with sarcoidosis (12.4 +/- 5.3 mumol/day), being more than 2-fold greater than the normal mean value (5.4 +/- 1.2 mumol/day). The highest production rates were found in patients with hypercalcemia, whereas subjects with hypercalciuria had production rates comparable to those in the patients with absorptive hypercalciuria. These data indicate that there is no impairment in the clearance of 1,25-(OH)2D in patients with sarcoidosis and that the elevated serum 1,25-(OH)2D levels are due to an increase in its production rate.

In looking further it was “hypercalcemia” that really caught my attention. According to a Mayo Clinic post on symptoms, it can effect the brain in a manner I’ve been quite familiar with!

Brain: Hypercalcemia can interfere with the way your brain works, resulting in confusion, lethargy and fatigue.

Oh yes! I would certainly say so! No I won’t profess or claim hypercalcemia—just yet! But it goes a long way to explaining the fuzz in my head, the weight gain, chronic fatigue and lethargy that’s been plaguing me since before the summer!

So like the good little detective and self advocate I am, I will pursue this further with Dr Kargutkar. I already have an appointment with her in a few weeks, as well as more blood tests.

Where I was feeling rather down yesterday when I started writing this post, today I feel a little relief. I know I don’t have an answer yet, but maybe a glimmer of hope. Don’t know if there is anything that can be done other than more prednisone if the Sarcoid gets worse, or other symptoms flair up. It is quite disheartening to know my Sarcoid is active. It catapults me back into a part of my life that I thought was over—or dormant. Brinks up lots of bad memories and feeling of loss.

I know what I’ve been through. I know what I’ve lost because of it—a huge chunk of my life! And I’m not willing cede any more of it either! So I will continue “the good fight”. The only fight! But It’s wearing me down! I will carry on as best I can. What other choice is there?

For now, I know where I stand. Not any real clear answers. But hey—there’s always tomorrow. And who know what more I’ll learn whether I’d like to or not!


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Joe Streno

artist . musician . photographer . apple computer consultant . residing in asbury park nj with his two cats rocky & rose & living to tell tales about it


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