Vitamin D and the Catch-22 of sarcoidosis.

We have all heard and seen in the media how people throughout the world are suffering from vitamin D deficiencies and how it is a leading cause of osteoporosis, fracture and death in post menopausal women.

We also know that some people with sarcoid have a dysregulation of D caused by enzymes made by granuloma.

This D dysregulation can lead to kidney stones, hypercalcemia and nephrocalcinosis in an unlucky few. Damage can be done to the kidneys because of them having to excrete excess amounts of calcium withdrawn from the bones.

The catch-22 comes when enough damage is done to the kidneys by the initial excess of 1,25D and calcium excretion. The kidneys can no longer successfully make 1,25D or erythropoeitin themselves - so you do end up with a vitamin D deficiency, bone disease and anemia.

You absolutely need both D tests done to confirm whether you are in the fore stage of this condition (the excess of 1,25D overloading system with calcium) or the end stage where the kidneys are so damaged they can no longer make hormones and enzymes.

You cannot have the 1,25D test done while you are on prednisone.

I had problems last summer caused by vitamin D dysregulation with raised calcium and phosphate levels. I also had problems controlling other electrolyte levels. Now both Ds have taken a sudden dive. My anemia also got suddenly worse, despite taking iron for iron deficiency. Most of my kidney paramaters have also worsened.

I am going to be going onto small doses of vitamin D because of this problem, so I will keep everyone posted on any eventualities. My doctor thinks I have had hypercalciuria which remained undiagnosed for years and it along with sarcoid has caused damage to my kidneys. I have red and white cells, casts and protein in the urine now. I don't have any sign of diabetes, so it isn't any form of diabetes which has caused my kidney issues.

Don't let the medical fraternity make you sicker. Advocate for yourself and your tests. Kidney disease can be masked in sarcoidosis because fatigue, lethargy and breathlessness can be put down to lung issues when they are actually caused by the kidneys. Make yourself familiar with signs of kidney disease and hypercalcemia. They can all easily be put down to sarcoid or drug side effects. So often by the time your bloods begin to deteriorate, the damage is already done.

Get fasting blood sugars done if on prednisone because diabetes can also damage kidneys. Check HgB levels and search properly for the cause of the anemia - don't just accept iron pills or D pills willy nilly. These could wind up making you sicker.

Another catch 22. If you are young enough for a kidney transplant, if you still have sarcoid or diabetes, you will probably need another transplant since the cause of the problem will still be present.

Pris

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24 replies. Join the discussion

Thanks for the information, it's exactly what I was looking for. Now I have a question for you. I have had, on and off for some time, pain in my lower right back. For the past week now, that pain has grown steadily worse and I suspect that it might be my kidneys. I have to say that I no longer have a doctor that I trust to treat me for my sarcoid in any fashion. The one that I did have has moved on to another area and now if I go to the ER I'll get what I get. Is there anything specific that I should ask for while there? I want to make sure I don't get yet another doctor that doesn't have a clue what to do. That's what got me into trouble back in 2009. Thanks again and I'll be thinking and praying for a good outcome for you as well.

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Pris, so sorry you're going through this. I, too, have been DX with hypercalciuria and kidney failure because of the calcium and sarc. It was DX early, so I still have a chance of dealing with it effectively. I will keep you in my thoughts and prayers. And thank you once again for your informative posts. You are a lifesaver.
Veronica

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just received a call from neuphrologist that calcium is up again to 2.7 and creatinine is up to 144. wants me to start pred again. finished a 9 wks dose in march and well it worked some. it just masks the disease. any suggestions on sarcoid being a hormone imbalace?

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If you concerned about kidney pain a CT, MRI or ultrasound is probably the best way to go.

Any doctor treating or monitoring sarcoid should include urea, uric acid, electrolytes and creatinine along with an egfr at least every six months or sooner, ideally 3 months or even 6 weeks.

The above tests monitor kidney function.

People should have micro urinalysis done also. This means that you do a spot urine test. The doctor or the lab should have dip sticks. If the sticks show anything up, the lab will then spin down the urine and examine it under the microscope. This can be also helpful for monitoring kidney and bladder function.

If one of the major organs is not working properly, others can soon follow. Kidney disease causes changes to the acid base balance, curtailment of blood manufacture in bone marrow leading to anemia, and loss of proteins leading to loss of globulin and lowered immunity.
It will cause azotemia and end stage uremia which requires dialysis.

Kidney monitoring is essential for over 50s. Loss of kidney function can be prevented if caught early. If you have sarcoidosis you are at higher risk of kidney disease caused by hypercalciuria, hypercalcemia and diabetes due to prednisone use.

Kidney function can be monitored via the test outlined above.

Pris

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hi VJ,

Thanks for your kind thoughts. It is rather ironic that I am now suffering from the things I have been warning people about. My knowledge was only slightly helpful because symptoms can so easily be put down to something else. My doc now agrees that I had hypercalcemia late in January and I was lucky to get through it without needing medical assistance. Even in disease the body struggles to correct things. It is only with the hindsight of blood tests that I realised that some of these symptoms were calcium overload. I blamed a helico bacter infection, ulcers and lactose intolerance. I was so wrong.

Pris

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Hi nativegal.

!,25 D, the end product of vitamin D is a hormone. It does cause hormonal imbalances because in sarcoidosis, this hormone is made by sarcoid granuloma more than it is made in the kidney. The kidney can denature excesses of 1,25 D, but cannot break down the 1,25 D made by sarcoidosis. This 1,25 excess has the potential to upset the balance of thyroid, parathyroid, pituitary and adrenal hormones. More rarely it can also upset the balance of sex hormones.

Prednisone is also a hormone. It mimics the adrenal hormone cortisol. When we take prednisone it also causes changes to hormonal pathways. Our adrenal glands stop making cortisol when we take prednisone, and for this reason we cannot stop taking prednisone suddenly. We have to taper prednisone to allow the adrenal glands time to begin manufacture of natural cortisol again. When we take prednisone for sarcoid, it helps with kidney dysfunction caused by excess vitamin 1,25D and calcium levels. It does this by converting the 1,25 D into a version of vitamin D which does not act on bone and gut. Its action to decrease vitamin 1,25D also decreases blood calcium levels and stops it from needing to be excreted by the kidneys, allowing them a chance to recover function and preventing any buildup of calcium within them which can cause permanent damage.

The problem is that you cannot remain on prednisone indefinitely.

Pris

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I started working a midnight shift at my job in January. A couple of months afterwards, I was advised that my vitamin D levels were extremley low (down to 9 to be exact). I think the range is anywhere from 32 to whatever. My primary dr. prescribed me vitamin d pills and told me to come back to see her in 6 months to re-take a test..after contacting them to verify it was okay because of my sarc, she replied or her nurse rather replied to not to take the pills AND to eliminate anything with Vitamin D from my diet...ummm how is that possible. So I contacted my rheumatologist (whom I was originally seeing to treat the sarc..but haven't been in a while) and he said that it was okay for me to take the pills. Confused? I am. When I went to see my opthamologist (who is treating my eyes b/c i have inflammation there), he told me not to take prescribed pills, but it was okay for me to take multivitamin supplement and things like orange juice and milk and I "should" be okay in addition to getting about 15 min of sun each day (which is sometimes hard, because when I get off at 8am, I usually go home and then i'm in all day, resting up from work). So much conflicting information that I don't know what to do or who to believe. I don't know if the levels are low because I'm not getting any sun or if its related to my sarc. Prior to working on a midnight shift, I worked during the day and never had any tests come back reporting my levels being low. This is a first for me.

So from my understanding from reading various posts, those with sarcoidosis shouldn't be taking any Vitamin D supplements? Or considering my levels were at a 9, I may need to intake Vitamin D via juice or milk or vitamin supplement? I plan to go back in a couple of months to get re-tested to see if my level have increased. Has anyone else level been this low?

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Hi Leegal

It is common for D levels to be low in sarcoid.

You have to do more tests to find out if the D level is caused due to deficiency or through sarcoidosis. A 25D level is not enough for a sarcoid or crohn's patient as it may be unsafe for them to take lots of D, especially 50,000 IU. People from this forum have been hospitalised for up to a week after beginning on 50,000 IU. Some of them have ongoing health problems as a result.

your best bet is to had a 1, 25 D or calcitriol level done if you are not on prednisone currently.
You can also have a parathyroid hormone level and a urine calcium level done.
Serum calcium and phosphate should also be regular tests if you have sarcoid.

If you are currently on prednisone it would be safe to take D at up to 2000 IU a day but sarcoid patients should best avoid 50,000 IU doses.

If you have a high urine or serum calcium levels, or high serum phosphorus level it will be unsafe to take D. It will also be unsafe to take D if you have a low PTH level or a high calcitriol level.

It is best to get these checked prior to starting on a supplement.

I myself am going to try low dose D, 160 IU per day for a week. I will stop it if I get any symptoms or if my next blood tests are abnormal. I get most of the above tests done on a regular basis.

Generally speaking Afro-Americans are not as prone to D and calcium problems as caucasians. The more white blood you have, especially if Scandinavian, Irish or German, the greater the chances of D dysregulation and sensitivity.

The majority of doctors who don't treat lots of sarcoid patients don't know about D dysregulation in sarcoidosis. However, word is beginning to get out in some circles. The more sarcoid patients doctors have, the higher the chances of encountering problems with D supplementation. You don't even have to be supplementing D to get the problem, though it is rare and more common in men who work outdoors.

Any prescription vitamin D supplements will have a package insert that carries a warning about sarcoidosis. This should be shown to prescribing doctors and then they can do the research. Even the Vitamin D Council does not recommend prescription D for sarcoidosis in the majority of cases. This type of D dose would be confined to sarcoid patients who already have kidney disease so long as their ACE and 1,25D are low. Even anephric no kidneys or non functioning kidney patients with sarcoidosis have still been able to get hypercalcemia. It is very individual, but more than just a vitamin D level needs testing. You cannot go on D alone for sarcoid and crohns patients. It can invite problems. Crohn's is a granulomatous illness just like sarcoid. I just found this article regarding it.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1774134/

Pris

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thanks pricurl
i have my blood work done once a month. the neuphrologist checks urea,electrolytes,creatnine,efrg,calcim,phopherous etc.
the calcium and creatinine r going up again! These same things caused me to be put into the hospital in Dec of 10. I was put immediately on IV to run saline solution to flush the calcium out. anyway when the dr. CALLED he just said your levels r up go on pred. for a bit longer this time. he didnt ask about blood pressure or other symptoms........and said see you in aug. I decided not to go on it and called and left a message for him. no response from him. wonder why they just dont do the saline IV automatically? any thought? Do you have a medical background? I have read and you have a lot of input that appears to be helpful! What will be the difference in Sarc causing the calcium to go up verses the D dysregulation? There has to be someething besides pred. I cannot even supplement with calcium or D !!!!!! (after the pred. depletes my bones!) doesnt seem right to rob Peter to pay Paul......either way something in the body suffers!!!! I have had sarc for a while..lived with the ugly sometimes purplish bumps(which r now on my nose and cheek!) last Sept for the first time is when all this new stuff started. I was taking mega doses of coral calcium and Vit d!!!!!! made me sick.. I quit in sept. Told my family dr. I wasnt feeling right....sent me to a rheumy and he put me on 3000 Ui of D. ended up in hospital.(for high calcium) finished pred in March of this year and now things r coming back! the pred took my smell and taste away.....have had a cold ever since....hips are sore(never had that before!) Dr said it would deplete there first!
nativegal

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Sorry Pris you are going through this. You know I have had a time trying to regulate the Vit D and kidney stones in my body. I am on a 6mg dose of daily steroid yet I still form stones. Stones back in 95 were my first sign that my body was failing although it took another 8 years to find the Sarcoid.

Are you saying that the 125 and 25 tests I do evry 3 months are worthless because of my low prednisone dose and I should maybe just go to a kidney specialist? I have been considering it.

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Hi Pris,

I am so sorry you are having to go through this! It is very unfair that this has happened to you, especially since you are a very well informed patient and have gone above and beyond what most patients would do in terms of research and being your own advocate. It is also frightening that a person can be under the care of doctors and still wind up with this problem.

Reading your post got me wondering again about my results from January. My rheumatologist did a Comprehensive Metabolic Panel, with the reference ranges and my results below. I am of English and Irish descent and my rheumatologist comments on how fair my complexion is every time I see her, so what you wrote about people of Irish descent having greater sensitivity and likelihood of vitamin d dysregulation caught my eye. Do you see anything on here that I should be concerned about? When I asked the rheumatologist about the abnormal GFR and BUN levels, she said it wasn't off by much and I was probably just dehydrated. My vitamin d has been low for some time and was still only 24 in January, after taking the supplements my PCP prescribed. I would appreciate any input you might have on these results. I just saw her again but she didn't order these tests this time, only my sed rate and CBC since my white blood cell count is low and some other stuff is messed up due to the sarcoid in my spleen and bone marrow. Do you think follow-up metabolic panel is warranted since there were some abnormal results last time? Are there any other tests that should be run? I know the 1,25D test is missing here - I requested it but she ran the 25d test again... sigh...

Sodium - 143 (137-145)
Potassium - 4.2 (3.6-5)
Chloride - 108 (95-110)
CO2 - 27 (20-31)
Anion Gap - 8 (0-12)
Bun - 23 (6-20) <TOO HIGH
Creatinine - 1.1 (0.6-1.3)
Glucose - 87 (70-110)
GFR - 52 (<60) <TOO LOW
Total Protein - 7.4 (6.2-8.3)
Albumin - 4.7 (3.5-5)
Calcium - 9 (8.2-10.3)
Bilirubin Total - 0.2 (0-1.5)
Alkaline Phosphatase - 78 (34-132)
AST - 30 (3-45)
ALT - 31 (7-40)

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hi all,
this whole vit d thing seems very complicated!! do you or dont you avoid it in foods, the sun etc?, i was dx with lung sarc in my right lung and in the lymph nodes in my chest 6 yrs ago, since then i have lived with it ok with no effects or symptoms or so i thought. 2yr ago while living in brisbane i had a 6mm kidney stone which was v painful but passed naturally could that have been down to the sarc?
came back to live in the uk 18 mnths ago and still seemed to be doing ok then 2 mnths ago started getting joint pain and dizzy spells so as we had decided to go back to brisbane in july i thought a check up may be in order. now the wheels of the nhs turn very slowly and all they have managed so far is a chest xray which confirm an increase in the sarc and a blood test which showed my ace level to be 85. my question is on my arrival back in brisbane what should my next move be regarding testing, vit d avoidance etc any help with this would be greatly appreciated as i am finding it difficult understanding the whats and what nots

cheers guys italian

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by the way i have not been on any meds for sarc now or in the past, i refused a course of steroids in the past which upset my consultant so much that we ended up in a full blown argument which ended with him refusing to see me again!! i have met and known people on steroids and to me the side effects seem to out way the cons. i have been reading the posts regarding curcumin and am considering giving that a go.
also looked into a certain banned site by the fsr and the information there but the thought of such high doses of the 2 meds they use frightens me also as they dont seem to know the long term effects of said doses or if they do seem reluctant to share the results

cheers again italian

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Hi Italian,

If you have a def diag of sarc, then it is highly likely the sun got you in Brizzy and that is why you ended up with the Kidney stones. I have sent you a PM. The sun in the UK is at a greater angle to the Earth than it is in sub tropical Brisbane. Since I have had sarc, the very best I have been with it is when I was in the darker, softer, drizzly and limpid light of the UK. The sun here hits you like a truck. I have sarc flares every summer. If you don't cover up, and if you are male as I suspect, you can expect more kidney stones.

I have your same objection to prednisone. I now refuse to take long term but it can get you out of trouble in a severe sarc flare. I had to resort to pred in 2008 when I had sarc near my optic nerve and again last year when I had severe pain and hypercalcemic issues. I took it for a week and two weeks only and it got rid of the sarc problems. You can always stipulate a short course. A week won't hurt you. You still taper, but asthmatic kids go on pred for a week a time. You don't get any side effects that way.

Pris

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Infact it's reversable sometimes. 4 years ago i had to lot of proteine and blood in my urine but since i'm on prednisone, plaquenil, remicade & imuran the tests are almost back to normal. I still suffer kidney stones tough, but not as much as be4.

David

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Hi Leegal,
I understand what you are going through I myself have the same problem. My levels are 18 and was told to take 4,000 of the vit D every day by the family doctor I sent him a article on this site about vit D and he changed his mind and is sending me to a rheumatologist and so I have to wait another month in pain for a opening. I feel there has been no end to this I just finished prednisone and then Lyrica it's good to be off drugs but what is next I don't know. My wish is that some day they could have one doctor you can go to just for sarcoid than one doctor for every organ.I feel for you I myself do not know the answer good luck to you.

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I don't know what to do! I was taking 50,000 once a week. My lab results for Ca today were 14 so now I'm up to 50,000 2x a week. I like my doctor so I'm really not sure what I want to do. I'm on Pred, 15 mg.

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Hi Jerri906,

Ca of 14 is high - was it flagged?. Anything over 11 for Calcium is high. If you were not on prednisone your Ca would be 16 and you would have symptoms. Why would somebody double your dose of D when you have a calcium which is abnormally high?? You cannot have a D deficiency and have a calcium of 14. You obviously have too much 1,25D in your system or you have kidney damage to have a calcium which is so high. If you begin to feel weak, nauseated, off food or begin vomiting, you need to go to the ER straight away.

Pris

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Hi All,

Looks like the high protein drink with the minimal 80 IU of D which my doc approved because both Ds were low are now off the menu. I won't be trying that experiment for a while. My 25D have dived again and my 1,25D has gone up well into normal range. All my kidney numbers have improved dramatically. So much for my docs theory that possible kidney damage is the cause of low Ds. My calcium is still hovering toward the upper end of normal and phosphate is still high! If kidney issues are ruled out, the only thing causing D, calcium and phosphate issues are sarcoid. My ACE has only come down to 218 from 233 six weeks ago. I have been on a low phosphate diet up until seeing the doc on Tuesday. She neglected to mention my phosphate level, only calcium. I started eating stuff I hadn't had since April, such as spinach and chocolate sauce. Now they are off the menu again. I cannot do the high protein shake either, cause it is chocolate flavoured.

The reason docs don't test 1,25D routinely is because they can do it from month to month in normal patients and the result will change very little. This is because hormones and enzymes keep this level tightly controlled. Sarcoidosis is a different fish. The 1,25D comes from the sarcoid which is outside the normal enzymatic and hormonal control systems. This is why in a sarcoid patient it can become a) abnormally high and/or b) the level jumps around a lot. My level was 59.5 six weeks ago, which was just below the normal range which begins at 65. Today my level was 81 which is well into normal range. While the 1,25D has risen, the 25D has dived to 22 which is even less - about 10 in US units. The only explanation for a diving D with a normal calcitriol level where calcium is hovering at the upper end of normal and phosphate exceeds it is sarcoidosis. There is no other possible explanation. I have also been getting excessive GERD again inspite of taking two Nexium and a Zantac.

Pris

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Hi Priscurl

I don't post here very often because of the censorship but there are a couple of things I can share. My latest discovery is Sodium Bicarbonate. Much to the amazment of my Kidney specialist it dramatically reduced my creatinine and potasium levels. There are several articles on the net . I take 500mg 3 times a day.

It seems to me the best way to protect the kidneys is high dose ARBs. Again this is well documented on the net.

Regards Trevor

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