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Calcium, Vitamin D3, osteopenia and sarcoidosis

Posted , 4 users are following.

Anhaga
Anhaga

I posted this in the sarcoidosis forum, but suspect it is unlikely to lead to much advice, so I'll try here too:

I am very confused about what to do.  Background - many years ago, about age 35, I was diagnosed with sarcoidosis.  It was completely asymptomatic and I thought nothing more of it until a couple of years ago an x-ray revealed traces of, as they put it, "old granulomatous disease" in my body - it was an x-ray of my spine so I assume these traces are in or near the lungs.  I'm currently taking prednisone for polymyalgia rheumatica, another inflammatory disease, and consequently taking significant Calcium and Vitamin D3 (and other relevant supplements) to protect my bones - already told I have "low bone mass" .  Recently had Vitamin D level tested and I'm nearing toxicity, level of 169.  A bit of reading on the internet makes me wonder if the presence of these granulomas can be causing this, as I certainly haven't been taking outrageous amounts of D3 supplements, nothing out of the ordinary for someone in my situation and age (I'm now 69).  Don't know what to do, really.  Have stopped the extra D supplements, especially as it is now getting sunnier, and hope that things get normal soon.  But should I be worried about my bones - apparently this high level of D is a problem, far worse than a slightly low level for people with sarcoidosis.

0 likes, 11 replies

11 Replies

  • Oregonjohn-UK
    Oregonjohn-UK Anhaga

    Posted

    I sometimes wonder if I'm taking too much Calcium/D3 now I'm at 2.5 mg of pred and the weather is better?  What symptoms do the levels, say your
    • Oregonjohn-UK
      Oregonjohn-UK

      Posted

      your give?  Sorry hit the button before finishingsmile
    • Anhaga
      Anhaga Oregonjohn-UK

      Posted

      Levels I understand should not be above 150.  When you hit 200 they get concerned.  Mine, when tested about five weeks ago, is 169.  My reading leads me to believe that my levels should be considerably lower, in two figures, not three.  But normal people have trouble maintaining a suitable level of Vitamin D, so probably no worries about getting "too much"!  Apparently the "granulomas" convert inactive Vitamin D to the active form, so obviously my body's control mechanism is completely off.  There is a theory that the granulomas are caused by a micro-organism.  eek
  • Joe131364
    Joe131364 Anhaga

    Posted

    I recently found out that ones body can only absorb 500 mgs of calcium at one time. I have been using 1,200 three times a day for one year and the calcium levels are fine. Thus the extra calcium is going somewhere else..I just e-mailed my doctor. I remember one year ago, the dosage was 1000 mgs three times a day. About two months ago my heighth and weight were taken and no changes observed. I also, against the recommendations of my doctor a year ago, I m taking 4,000 mgs of Vitamim D3 in the morning. Blood tests say that am within the limits. Thus I concluded that definately each person is different. I recently did some research as to when men shoud be checked  for Osteoporosis. After the first test came back severe, I asked my doctor why he waited so long. He said he was following some guide line. I just left it that.  Then my cousin 6 months ago sent me a copy for some magazine that men with a hip fracture have a year to live. Now i did some more research and asked the National Osteoporosis foundatoin to send me their recommendation. I received a wonderful PDF file with the same age recommendation of 69 to 70 years of age.I then e-mailed them back how recent was the data, and they said they did not have money to do more research! I belong to Kaiser permanente in the US. I issued two recomendations about using their own data base to see  what was the severity was for men in the same age bracket. Well after 4 months, the last reply was they were not really interested to doing any research. Thus my next step is to send a letter to the CEO of Kaiser. Now in Canada the age recommendartion is 65!
    • Anhaga
      Anhaga Joe131364

      Posted

      I'd been careful about my supplementation.  I think all would have been well except the sarcoidosis turned out to be relevant after all.  Sigh.

      Now I really don't know what to do.  Apparently magnesium helps activate vitamin D as well, so I guess I'd better give up that, especially as I've given up both D and calcium for the time being.  I shall have to make sure my doctor tests more things next time, but not scheduled to see her for a couple of months.

    • Anhaga
      Anhaga

      Posted

      I have to assume that things like K2 and E and the B complex are all right!
    • Joe131364
      Joe131364 Anhaga

      Posted

      Just got this message from my doctor:

      "Great news.

      Your bone density scan "DEXA" showed Osteopenia (not Osteoprosis). Please take Oscal plus D3 after meals please. Repeat test in 5 years."

      Acually I will stay with calcium Citrate 1000 mgs x3 plus D3 4,000 mgs in the morning. I will up the numbers of games I bpwl a day to 40 games and continue lifting a dumbell for my right arm. Also I need to walk.

      Also, I just checked that in 2012 I had a test and it indicated thining bones. Thus I wonder why the tests were not more frequently.

      Also the medical center called Kaiser Permanernte hadno interest to my suygestiontol review ther resultsof men tested at ages 69-70 to to see the results. In Canada the age is 65. Ths I bwe writing a letter to the CEO regarding my suggestion and the respones! They aleady know me that I question everything!

    • Anhaga
      Anhaga Joe131364

      Posted

      Good for you, Joe, being a squeaky wheel!  Guidelines are just that and kind of useless if the medical establishment doesn't act on them.  Until I asked for a DXA scan after I started on prednisone no one had ever suggested I have one.  I broke my leg in 2014 (slipped on ice and twisted knee sideways, I do question that it was a "fragility" fracture.  Injury apparently the single most common fracture in Canada).  I was at the time about to turn 67.  I had no idea that bone health was such an important consideration, although when I was about 50 I'd started taking a calcium citrate supplement, my own idea, no doctor suggested this.  Also lucky that my job from the age of 48 for about seven years involved a lot of gentle but sustained physical activity, shelving books in the public library. Now that I know more, I think a DXA scan should be offered to all women and men by a certain age, just as we are offered other medical tests.  In my community I got a call out of the blue offering me a mammogram.  I thought it was probably about fifteen years too late, and politely declined.  Everyone over a certain age, I think it might be 65, is also sent every two years a home test kit for colon cancer.  There is the ongoing push to cut back on smoking and alcohol consumption, also the importance of eating well and exercising for heart and brain health.  But never a word about bone health, on which our whole bodies are built! 💃
  • Joe131364
    Joe131364 Anhaga

    Posted

    Here are my results of taking 4000 mgs of vitamin D3 in the morning.The doctor had recommemnded only 2,000 mgs in the morning. I am stubborn I took the max of 4,000 He said he would test me in a few months but did not.

    VITAMIN D, 25-HYDROXY, D3 55 ng/mL

    VITAMIN D, 25-HYDROXY, D2 4 ng/mL

    25-HYDROXYVITAMIN D9 ng/mL Std range 30 - 100 ng/mL

    In fact when I foud out that I had sever opsteoporos in my hips, I must have sent out at least 120 e mails! They know me very well! One nuse said that I probably know as much as some of the doctors!

    • Oregonjohn-UK
      Oregonjohn-UK Joe131364

      Posted

      The normal Calcium tablet prescribed by doctors to counter steroids and their possible effect with OP is 2 x 500mg calcium/1250 mg calcium carbonate.  Mine also contains D3 (400IU = 10 micro grams D3). You can end up with other problems if you take too much (Hypercalcaemia) - always worth reading the data sheet that comes with every prescribed med.
  • Joe131364
    Joe131364 Anhaga

    Posted

    Oh yes I bowl about 30 games per week. My new goal is 42 games a week.
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