Sarcoidosis causing high calcium

I have signed up to find out more info about sarcoidosis.

My mother was diagnosed with Sarcoidosis in October of 2006, from a biopsy that was done from a skin lesion on her nose. No treatment was needed at that time and we did not realize what all the symptoms were for someone with Sarcoidosis.

My mother will be 81 in August. She fell on March 29, 2009 and fractured her ankle. She has never fallen before. I took her to the hospital and her calcium level was 15. I was told this was very high. I knew something was wrong. She was in the hospital for 9 days and they did not discover the reason for her calcium being high. Her parathyroid was a little low, so this was not the cause of her calcium being high. A few years back her calcium level was high due to her parathyroid.

After being out of the hospital for 1 month, her calcium level went back up to 13.5, and she was in the hospital for 2 days to get it down. Mom lives one hour from me and lives alone, so this is not good. She has been staying with me since she got out of the hospital in early April with her fractured ankle. I was not expecting her calcium level to go back up. When it does, she does not drink or eat well, and gets confused easily. She has just had a lot of blood work done by her doctors, doing all kinds of test to determine what is causing her calcium level to become so elevated. We are waiting on the results now. Her Doctor has said that the Sarcoidosis might be what is making her calcium level go up. I don't understand what is making this happen all of a sudden. All of her levels were normal in mid-February at her checkup.

Mom also has had so much pain with her feet and joints, also being so very tired all the time. I did not realize that this might be from Sarcoidosis.

I would appreciate any info concerning Scarcoidosis and high calcium. What really to expect from here.

Thanks!

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16 replies. Join the discussion

Hi Alethea,
Sorry to hear about your mum. I suggest you post Priscurl as she has loads of information about Vitamin D and calcium in relation to Sarcoidosis. She is very knowledgeable about such things. Priscurl currently has an active discussion on this topic. Good luck and I hope your mother improves.
Ausdeb

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when I was diagnosed my calcium was very high also. Doctors put me on IVs and prednisone and my calcium is being stabled ever since and this was back in october of 08. Hopefully this help for you and good luck.

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Sorry about your momma. Either she has been hiding a lot from you or she has been doing pretty well all these yrs.
So far I found this info that I have saved and I do believe PrisCurl posted this. The 1st book may be one that you would like to start out with.

BOOKS

Sarcoidosis
By Robert P. Baughman
Contributor Robert P. Baughman
Edition: illustrated
Published by CRC Press, 2005
ISBN 0824759265, 9780824759261
813 pages
See especially Chapter 29 'Calcium Metabolism' and pp632 - 654 esp which is most of that chapter (and additionally pp 46, 156,195,204,425,455,572.)

An Atlas of sarcoidosis: pathogenesis, diagnosis, and clinical features
By Violeta Mihailovic-Vucinic, Om P. Sharma
Edition: illustrated
Published by Springer, 2005
ISBN 1852338091, 9781852338091
117 pages (see especially pp 74-74 and 116).

Sarcoidosis and other granulomatous disorders
By David Geraint James, William Jones Williams
Edition: illustrated
Published by Saunders, 1985
Item notes: v. 24
Original from the University of Michigan
Digitized 1 Aug 2008
ISBN 0721610447, 9780721610443
254 pages
(Especially page 232 which describes vitamin D supplementation in 'Ineffective and harmful regimens'.)

Vitamin D: Molecular Biology, Physiology, and Clinical Applications
By Michael F. Holick
Edition: illustrated, annotated
Published by Humana Press, 1999
ISBN 0896034674, 9780896034679
458 pages
See Especially Chapter 20 by J.S. Adams
Extrarenal Production of 125Dihydroxyvitamin D 337- 356
key words sarcoidosis , hypercalcemia , macrophage

Vitamin D: new research
By Veronica D. Stolzt
Contributor Veronica D. Stolzt
Edition: illustrated
Published by Nova Publishers, 2006
ISBN 1600210007, 9781600210006
184 pages
See pp 62, 66, 67, 84, 85, 86, 90, 92, 104, 113, 132, 133, 135, 159, 162, 163, 165, 166 sampling, 88, 97 sarcoidosis, vii, 1 , 2, 3, 4, 6, 7, 1 0, 1 1 , 1 4, 1 6, ...

And finally

Vitamin D: a pluripotent steroid hormone : structional studies, molecular endocrinology, and clinical applications : proceedings of the ninth Workshop on Vitamin D, Orlando, Florida (USA), May 28-June 2, 1994
By Anthony W. Norman, R. Bouillon, Monique Thomasset
Edition: illustrated
Published by W. de Gruyter, 1994
Original from the University of Michigan
Digitized 29 Jul 2008
ISBN 3110141574, 9783110141573
966 pages
Esp pages 148 and 489

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Here is the info you want from PrisCurl that I have saved. She is wonderful and she has saved many of us and I have been trying to help.

As you know, there is a big stir on about the sunshine vitamin called vitamin D. Vitamin D is touted as a prevention for every disease of aging from osteoporosis, to cancer, to dementia. If you are already a normal healthy person, vitamin D may do this for you. I stress may, because even the medical texts say may - there is no certainty in this.

In fact, the knowledge of the actions and roles that vitamin D plays in the body grows daily. Once thought to be essential for calcium balance, vitamin D is now implicated in gene transcription, immunity and may even be the master hormone of the body. Medical science is only beginning to scratch the surface about what this hormone does in normal and abnormal metabolism, health and disease.

Vitamin D comes in many, many different metabolites and intermediary forms.

The type found in mushrooms is ergocalciferol.
The type found in supplements is cholecalciferol.
The type which doctors measure in our bloodstream is the hormone calciferol or 25D. When a doctor asks for a serum level of vitamin D, this is what is measured.

Doctors are trained to test this hormone and supplement it if it is low to offset potential problems of osteoporosis and other diseases of aging.

This is one sweeping health care policy which rarely takes into account that, in certain cases, exceptions must be made. One of those cases is sarcoidosis. Others include lymphoma and cancer.
Vitamin D may indeed help prevent the disease, but once you have that disease, it is more hindrance than help. Some people have more problems than others.
I will try to explain it as simply as possible, but in a schematic version of a very complex process.

The key things to bear in mind with sarcoidosis are:

1. On top of ingestion and renal production of vitamin D, there is extra renal production of vitamin D from sarcoid tissue (which is abberant and abnormal).

2. Healthy people cannot get too much vitamin D from the sun or food in normal circumstances. Healthy people produce an enzyme which acts as a garbage disposal for any overproduction of vitamin D. The enzyme which mops up this extra vitamin D is not made by people with sarcoidosis. Therefore, vitamin D can build up to toxic levels if not monitored when supplementing.

3. The vitamin D produced by sarcoid tissue is outside the normal bodily control mechanisms of hormones and enzymes employed to keep levels in balance. Balance equals health. Sarcoidosis isn't health.

Because of overproduction of vitamin D by sarcoid tissue, the body says HEY! "Since we have too much vitamin D, lets shut down production for a while". There are two vitamin Ds in this consideration. 25D and 1,25D. We need 25D to make 1,25D. 25D is made from food, sun exposure and liver metabolisation. This is the vitamin D measured by your doctor. It does not become 1,25D until it passes through the kidney. The 1,25D has roles in the body to play, whereas the only role of 25D is to become 1,25D when passing through the kidneys. Except, if we have sarcoidosis, this 25D is metabolised into 1,25D by sarcoid tissue as well, leading to a surfeit of 1,25D and a seeming depletion of 25D.

Your body is actually trying to restore balance by shutting down one form of vitamin D production in order to stop the diseased parts of your body over producing the biologically active form of vitamin D. This bioactive version of D will pull calcium from your bones and cause you to absorb more calcium from food. This will ultimately lead, if left unchecked, to an imbalance of calcium. As you have sarcoid and cannot regulate levels of vitamin D as a healthy person can, the level will continue to build up in your system. You should be monitored while taking supplements unless you are also taking fairly high doses of prednisone concurrently.

Your doctor has measured your 25D and calcium which is now normal. You need to know for the sake of your health what your 1,25D is and your urine calcium level. You might throw in your parathyroid hormone for good measure. Until you know your status with these, you don't know how safe it is to take vitamin D. And it is not contraindicated if you have sarcoidosis to measure these other hormones or metabolites. Hypercalciuria can very quickly become hypercalcemia in sarcoidosis patients on supplements, especially if they are not taking prednisone or a hydroxychloroquine.

It is calcitriol or 1,25D which has to be measured in sarcoid. A low vitamin D level does not indicate deficiency unless you also have a raised PTH and low or normal 1,25D.

And in sarcoidosis, serum calcium may be normal while urine calcium is abnormally high. This is why it needs to be checked.

If you have active sarcoidosis, you could have a low 25D, high 1,25D, low PTH and high urine calcium.
Unless you are taking prednisone, it is not wholly safe to supplement with vitamin D in sarcoidosis.

I have not supplemented and yet my D has gone from a very low 27 to 46 when migraine and eye granuloma struck, to 55 when I have parenchymal chest changes from a clear chest 1 year ago. However, on supplements, you can expect it to go even higher and the more 25D you give the sarcoid granuloma to feed on, the more 1,25D they will pass out the other side, stuffing up your whole body's metabolism.

But don't take my word for it. Read these:

http://www.chestjournal.org/content/109/2/535.full.pdf+html *****

http://www.annals.org/cgi/content/full/127/3/203 ***

http://www.pubmedcentral.nih.gov/picrender.fcgi?artid=288112&blobtype=pdf ****

http://www.jci.org/articles/view/109442/pdf

http://www.rila.co.uk/issues/full/download/2e31fe69e3861f29a3e7ace26895f60e 753065.pdf

http://www.biomedexperts.com/Abstract.bme/10560127/Bone_mineral_density_and _vitamin_D_in_patients_with_sarcoidosis

http://www.endocrine-abstracts.org/ea/0005/ea0005P35.htm

http://www.fedlaw.gov.au/ComLaw/Legislation/LegislativeInstrument1.nsf/fram elodgmentattachments/57468C338FDDF6DECA2572200005B09B

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I found more info. I hope it isn't over repeating. I have to gather my notes and redo them again.
Best of luck to you.

#1
The most frequent effect of sarcoidosis in the kidney is due to hypercalcemia or hypercalciuria. Nephrocalcinosis, nephrolithiasis, and interstitial calcium deposition all have been reported and may lead to renal failure. Radiographically detectable nephrocalcinosis is reported to occur in 1–4% of patients [15, 56]. Hypercalciuria is more common, being reported in 15–62% of patients. Hypercalcemia is noted in 3–11% of patients [7]. Increased conversion of 25-hydroxyvitamin D3 to active 1,25 dihydroxyvitamin D by granuloma macrophages causes disturbance in calcium metabolism. This overproduction then results in increased intestinal calcium absorption [57]. Most patients with hypercalcemia have radiographic evidence of pulmonary disease, although this occurrence is not consistently found [58]. Acute sunlight exposure may precipitate hypercalcemia by increasing the availability of substrate for this conversion. Such acute hypercalcemia may result in malaise, dehydration, or pancreatitis and may be the initial presentation of sarcoidosis.

http://www.ajronline.org/cgi/content/full/182/1/15

#2
None sarcoid people. Women who are osteoporotic often supplement with vitamin D. Usually these women have the following: Low 25D, High PTH. 1,25 D is rarely tested but it is usually either low or normal. They are usually kept on D until the PTH comes down to within normal range. However, if they take too much vitamin D their 25D will rise high but their 1,25D usually remains normal. Their PTH will drop also.

With sarcoidosis too much attention is paid to 25D. Due to various enzymes, 25D will nearly always be low in people with active sarcoidosis and return to normal in remission. The 1,25D level is high in sarcoidosis (but this is often occult because doctors are trained to test 25D).
Giving vitamin D to a person with sarcoidosis will not raise 25D levels unless they are in remission. However, it will raise 1,25D levels because the CYP24 Enzyme necessary to mop up excess vitamin D in sarcoidosis is not made. The PTH in sarcoid is often low despite the low 25D level, this is because the 1,25D is high.
1,25D is the active metabolic form of vitamin D, whereas 25D is only has the potential to become active D. Until 25D has an extra hydroxyl group added onto the molecule, it has no action in the body.

Here is what happens in different scenarios with Ds and PTH.

Healthys = Normal 25D
Normal 1,25D
Normal PTH

Add supplementary D and you might get this depending on the dosage and how long it is taken.
High 25D
Normal 1,25D
Low PTH

Osteoporotics
Low 25D
Low/ Normal 1,25D
High PTH

Addition of supplementary D taken for long period without checking you will eventually get

High 25D
Normal 1,25D
Low PTH

Sarcoidosis (active)

Low 25D
High 1,25D
Low PTH

Addition of supplementary D in active sarcoid you will get

Low 25D
High 1,25D
Low PTH

I hope this helps. In all cases PTH is the arbiter.

My most recent test of these came back:


#3
http://rheumatology.oxfordjournals.org/cgi/content/full/39/7/707 *****

http://www.chestjournal.org/content/109/2/535.full.pdf+html *****

http://www.annals.org/cgi/content/full/127/3/203 ***

http://www.pubmedcentral.nih.gov/picrender.fcgi?artid=288112&blobtype=pdf ****

http://www.jci.org/articles/view/109442/pdf

http://www.rila.co.uk/issues/full/download/2e31fe69e3861f29a3e7ace26895f60e 753065.pdf

http://www.biomedexperts.com/Abstract.bme/10560127/Bone_mineral_density_and _vitamin_D_in_patients_with_sarcoidosis

http://www.endocrine-abstracts.org/ea/0005/ea0005P35.htm

http://www.fedlaw.gov.au/ComLaw/Legislation/LegislativeInstrument1.nsf/fram elodgmentattachments/57468C338FDDF6DECA2572200005B09B

#4
Bones are soft because of sarcoidosis. Vitamin D is not the answer to strengthening your bones. It will do the exact opposite. Every bit of vitamin D you introduce to sarcoid tissue is converted into the bone resorption hormone called Calcitriol (also known as 1,25D). This high level of 1,25D is the reason you got hypercalcemia in the first place and you cannot get 1,25D except from 25D. 1,25D stimulates osteoclasts to release calcium from your bones into your bloodstream. This is what makes bones soft. Untrammeled, untreated sarcoidosis will create soft bones faster than it would for sarcoid patients on prednisone. Prednisone is your friend in keeping calcium in your bone by knocking down production of 1,25D in sarcoid granulomas.

Your body tries to cope with this excess sarcoid 1,25D and calcium in many ways.

1. The excess calcium in your bloodstream is filtered by the kidneys which pass the excess Ca and PO4 into your urine. However, a critical point is reached when this can no longer happen and you end up with hypercalcemia. Having constantly high urine calcium levels can cause damage to the kidneys.

2. Levels of PO4 build up in the bloodstream hoping to signal to the hormone PTH to stop production of calcitriol. (1,25 D) This excess PO4 is also dangerous as excess phosphate in the blood can cause heart arrhythmias. This phosphate comes from bone resorbed under influence of 1,25 D

3. The high levels of 1,25D, calcium and phosphate suppress PTH which normally rises to stimulate 1,25D production in the kidneys. PTH drops to as low as it can go and stops kidney cells producing 1,25D.

4. While PTH may stop kidney production of 1,25D, it has absolutely no effect on macrophage, granuloma and sarcoidal tissue production of 1,25D.

5. Because the granulomas are producing the 1,25D, The enzyme that mops up excess normal bodily production of 1,25D, and keeps healthy patients' 1,25D strictly within normal range, is not made. Therefore excess sarcoid tissue-produced 1,25D continues to rise, it continues to stimulate bone resorption, and continues to produce high blood and urine levels of calcium and phosphate - the minerals of bone, which has to be passed out through the kidneys.

6) You cannot get 1,25D except by first making 25D. Because you have more 1,25D than is bodily necessary, and normal enzymatic and hormonal reduction methods are bypassed because the 1,25D is not produced in the normal bodily manner. So enzyme pathways tell your liver to slow production of 25D. This is one of the reasons why you appear to have a deficiency, but it is NOT a deficiency, it is your body trying to rebalance itself under enormous pressure from sarcoid disease processes. By slowing production of 25D, it slows production of 1,25D by sarcoid granuloma and therefore slows resorption of calcium from your bone. Low 25D is your friend. It is trying to prevent your bones flowing out through your urine and going down the toilet.

7. Any 25D which is made from normal means is rapidly converted into 1,25D by sarcoidal tissue. Your kidneys are not even producing 1,25D at all at this stage when 1,25D gets to excessive levels. People who have sarcoid and have lost both kidneys due to damage caused by high calcium levels still produce 1,25D because they have sarcoid tissue. If a normal person had no kidneys, they could never produce 1,25D and would have to take Calcitriol in tablet form. The more 25D you pass through the liver, the more there is for the sarcoidal tissue to produce more 1,25D. Your sarcoid tissue is a 1,25D production factory. Remember all hormonal systems have already been locked down in order to minimise normal production means. The enzymatic mop up system cannot help because the 1,25D is not made by the kidney. Therefore the more 25D exposed to sarcoid tissue, the more 1,25D is produced and the more your bones are resorbed. This is another reason why your D appears low. The rapid conversion of all available 25D into 1,25D. While your 1,25D is high, you don't need any 25D.

The greatest peddler of vitamin D in the USA today is Dr Michael Holick. Tell your doctor to look up sarcoidosis in Dr Holick's book entitled, very simply,
"Vitamin D". What I have told you here is in Dr Holick's book. Under no circumstances would Dr Holick countenance giving vitamin D to a patient with active sarcoidosis. Dr Holick is on the Vitamin D Council and he promotes Vitamin D every chance he gets.

My doctor told me to take Ostelin. I refused to take it, but like you, thought perhaps by getting natural vitamin D through food and sun, it would not be so bad. How wrong I was. My 25D was 27 in Aug 08. I was fine then. In Spring I was taking late afternoon sun and continued to eat a high protein diet. By early summer, I had a severe migraine and developed a scotoma in the eye which turned out to be sarcoidosis. A couple of days later I learned my 25D level had risen to 46. I was treated with high dose prednisone for two weeks and luckily it cleared the sarcoid in my eye. Had I not taken the prednisone, the sarcoid could have spread to my brain. I had a CT the other week and my chest has worsened. The late February 25D level had reached normal range at 55. I have a case of active sarcoid. What is more, 1,25D promotes and encourages the growth of more granulomas by stimulating bone marrow to produce monocytes which are recruited to the new granulomas. My most recent blood test showed a rise in monocyte cell levels. They had been 0 for months. That D has activated the sarcoid, and God knows what would have occurred had I followed his instructions and taken Ostelin. As my urine was calcium high and my PTH mid range, I'd have probably ended up in the hospital with hypercalcemia too.

So not only does 1,25D deplete the bones, it also causes the production of more sarcoid granulomas. This is why taking things like Ostelin are not good for people with sarcoid. The doctors mean well, but they don't understand the physiology of the disease very well. They are applying a health policy as they would to a normal patient. We are actually an exceptional case and the policy does not apply to us.
Our government, Australia, classifies sarcoidosis patients as vulnerable when it comes to administering vitamin D. Doctors who give vitamin D should monitor patients. It is a doctor's fault if a patient ends up in the ER with hypercalcemia.

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Hi Alethea,

I am very sorry to hear what has happened to your mum. If your mum had a lesion biopsied that was on her nose, it sounds as if she has a form of sarcoidosis called Lupus Pernio (not to be confused with sytemic lupus - which is another disease).

I would say that it is odds on that your mum's high calcium level is due to sarcoidosis, especially if her parathyroid hormone level is low. You need to get your mum to a doctor and have the following blood and urine tests done.

Serum Angiotensin converting enzyme
Serum parathyroid hormone level
Serum 1,25 hydroxy vitamin D
Serum alkaline phosphatase
and 24 hour Urine calcium.
These tests will determine if sarcoidosis is causing her high calcium level which odds on is the case. This will be expecially so if all the above tests are high, with the exception of the parathyroid hormone level.

What you mum needs to do is steer clear of the following foods. All dairy products, eggs, especially the yolk, fish - especially oily fish like salmon. Stop vitamin or mineral supplements containing calcium and vitamin D. If she is on Fosamax or Actonel, she should check with her doctor and probably stop it. She should not have any cereals, milk or flour (or orange juice) that is fortified with vitamin D or calcium. She needs to cover up exposed parts of her body when out in the sun, wear hats, sunglasses and gloves.

Hypercalcemia causes confusion and also muscle weakness in the legs, so she will be prone to falls.

Good luck

Pris

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Hi Pris,

Thank you so much for all of the info. I have so much to learn about this disease.

Her doctor has ran the following tests:

PTH Related Peptide
Immunofixation serum
PTH intact
Vitamin D
Vitamin A
Vitamin D1,25
D1 hydroxy
24 hour urine

I received a call yesterday from her doctors office stating that thus far things were looking good. no sign of any cancer. Praise God! All the results are not in yet.

It is my understanding that her doctor feels that the high calcium is from her Sarcoidosis. Should I ask for the test results in writing so that I can see the actual numbers?

I did not know that there were so many different types of Sarcoidosis.

For years mom has been watching her calcium intake.
She does not take a multi-vitamin due to this.
Her doctor does have her drinking 1 Boost per day, which has 35% calcium in it. This is something she has done for many years, before we knew about the Sarcoidosis. At her last visit with him on June 1, 2009, he did say to only drink 1 Boost per day which he has never said before. On occasion mom may have had 2 a day, but rarely. She actually eats very little, if not hungry at night she may have drank a Boost if she wasn't hungry for food, but like I said this was very rare. She also eats one small yogurt per day which is something her doctor told her to do years ago. She was told all of this years ago when her calcium level went up and they discovered it was due to her parathyroid at that time. Which is not the case now. This was before she was diagnosed with Sarcoidosis.

I have told mom that I feel that all of her pain and soreness in her feet is probably due to the Sarcoidosis. We were thinking it was due to arthritis.
Do you think the Sarcoidosis could cause pain and soreness in her feet? She has bought so many shoes, trying to find some that would make her feet feel better.
She also stays so tired all the time and everything is so heavy to her when it comes to picking up something, even like my purse. As I learn more about this I think a lot of things will make more sense. No one has actually ever explained Sarcoidosis to us. I guess I just thought it had something to do with her skin.

Mom is taking Actonel prescribed by her doctor. Please tell me why you said that she might should not take this.

Mom also has asthma, which she has had since she was 18 years old. In the past 4-5 years she has been doing much better with it.

When she was in the hospital they did a bone scan, looking for cancer, none found. She does have rheumatoid arthritis. She is not on any medications for it.

I do feel that when she fell on March 29, 2009 and fractured her ankle that it was probably do to her calcium level being so high at this time.

One of my concerns is that mom lives alone. As you know when the calcium level gets high confusion sets in. At this time she wants to continue living at home. As I learn more about this disease, I hope to be able to see the signs of her calcium level becoming high. At this time the only thing I know to do it to take her to the emergency room.

Once again thanks for all of your info.
Have a blessed day.

Alethea

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What a wonderful daughter to be concerned about your mothers disease. I think most of my family is too busy are in great denial to even want to know about this disease. Think God for my husband, he seems like the only one that is very understanding every time I hurt or want to talk about how I feel. Your mother is very blessed to have you. Gloriann

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Thanks for the info. I have some questions for Pris which I have posted. I hope I did this correctly as I am new to this site. I hope she will respond soon.

Have a blessed day!
Alethea

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Each time mom has been in the hospital they have pumped her full for fluids IV and given her Predisone to bring down the Calcium level.

Her doctor is trying to determine if her Sarcoidosis is causing her level to rise. I don't understand what has changed all of a sudden to make her calcium level go up. In mid-February it was normal, then at the end of March when she fell it was up to 15. Then in mid-May it was back up to 13.5. We are waiting to hear back from a lot of blood test and a 24 hour urine.

I hope that you are doing well.

Thanks,
Alethea

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I appreciate all of this info. I am sure it will take me a while to go thru it. I have so much to learn.

As I said before, mom was diagnosed in October of 2006 with Sarcoidosis. I had never heard of it before. She was diagnosed by a dermatologist that her internal medicine doctor sent her to concerning this spot on her nose. For the most part we both thought this was just something to do with her skin.
It was never explained to us.

For many years mom has been in a lot of pain with her feet, being very tired and I would say weak muscles. Her doctor always said the foot pain was probably due to arthritis. She has bought so many shoes trying to find some that her feet did not her in. I am thinking that maybe all of this is from the Sarcoidosis, as I learn more.

Thanks again.
Alethea

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I RECENTLY HAD SURGERY ON MY SHOULDER FOR A CALICUM DEPOSIT, ONE MONTH LATER ANOTHER ONE FORMED. NO ONE AS MENTIONED THAT MY CALCIUM IS HIGH I HAD ALL PRE OP BLOOD WORK. ANY IDEAS. THANKS MARTY

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Pris
I am going through a similar problem for two weeks now. I have been on 4mgs of Prednisone for over 2 years. I have had some issues with dizziness but overall my bloodwork has been normal. So two weeks ago I had a migraine and when I woke up the next day I could not walk. I mean it feels like my legs are rubber and won't hold me up. The dizziness and balance problems are still there. I have been to several specialists about that and no answer. I finally went to the ER last week and they kept me fearing NeuroSarcoid. They did a comlete Neuro MRI (spine in 3 places and brain) with nothing showing up. I have been on 40, 20,15,10 and now stuck at 8mgs of prednisone but still can't walk. My ACE, CRP and sed are all normal.They even did a test where they stick your legs with needles and shock you. Negative. The only test they did not do is anything related to D and calcium. My question to you is would this cause weakness in the legs like that and dizziness like you will fall over along with balance issues? I have avoided most vit D foods except for some milk the past 3 weeks on cereal and a couple shakes. I know my D is already low. I have avoided supplements like the plague but still I feel so awful. They are referring me to Univ of Mich in a few weeks.
Any advice would be appreciated. My PCP is willing to order some of the tests but felt the stint in the hospital and the few days up on my dose of Prednisone would have fixed the Vit d problem.
Bunkie

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Hi Bunkie,

I sorry to hear of your plight. That is really scary, but I can appreciate your problem. As summer kicked in for us is Oz last year, I also suffered a migraine and the following day ended up with a visual deficit which turned out to be sarcoid related. Further tests showed progression in the chest. I ended up for a short time on high doses of prednisone. Luckily I have a real savvy doctor. It is really frustrating for you that nothing showed up in any tests. Unfortunately, many doctors say - nothing showed up, so there is no point in following up on anything. This is the wrong attitude to have about a serious condition like sarcoid. The first abnormal test for me was my 25D which had been low (i.e. normal for a person with active sarcoid) It had risen substantially. It was almost normal. I saw the doctor, got the migraine on the way home. The doc called the following day with my absent D test result, told me it had risen greatly from a test 3 months previous then just as the headache subsided, I lost partial vision in one eye.
Another doc thought I had a detached retina and sent me to hospital. Tests there confirmed sarc. Follow up tests further confirmed it. However, at the time of the D rise, both CRP and sed rate were still in normal range but had risen from well within normal range three months previously. Tests a couple of weeks later showed the CRP abnormal while sed rate was still normal at that stage. It took a couple more weeks before the sed rate became abnormal. This happened despite prednisone. You can have perfectly normal tests when the symptoms first hit. It can take 2 to 4 weeks before blood tests show any abnormality unless you have been having symptoms over a period of time. This is why it is good to have more than one doctor you can go to.

Certainly weakness is a symptom of hypercalcemia. As is confusion, but so is thirst and peeing a lot. If you feel you have a problem, then you should see if a doctor can order 1,25D and 25D. Certainly sarc can break through a 4 mg dose of pred. If you are on medication sometimes a 1,25D will be normal and it is the sudden rise in 25D which will bring on sarcoid sickness. Disease that is well established will show the 25D low high 1,25D pattern. Once on prednisone, the 1,25D will lower significantly and is no longer much of an indication.

Pris

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Thanks Pris
My PCP ordered both tests and parathroid along with a 24 hour urine. Hopefully that will give us some answers about the D issue. If not that we go to the next step and look at thyroid although my blood work showed a level of 0.84 and that they say is normal. I will check back with those results when they come in for your opinion. Again thanks.
Bunkie

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Hi Alethea,

The tests which the doctors are doing are ones which will rule in or out, Hyperparathyroidism, cancer, hypervitaminosis D and A, hypercalcemia and hypercalciuria. It should determine whether her hypercalcemia is caused by any of these conditions. To determine whether sarcoidosis is implicated, she may also need a CRP, ACE and sed rate. Hypercalciuria is more common in sarcoidosis than hypercalcemia. However, if your Mom has hypercalciuria, she will be at greater risk of sarcoid hypercalcemia.

It may be wise to get a copy of the test results in writing. Be adamant about getting a copy.

I am glad there was no sign of cancer, that is what the peptide test was for.

Many sarcoid patients will attest to the fact that Actonel and the like do not help them. Their bone densities continue to worsen despite treatment with these drugs. My Dad had lymphoma and he also continued to worsen. This is because the diseased tissue produces its own form of vitamin D which depletes calcium from the bones. The only way to stop this is to stop the disease, and that rarely occurs. Treatment with vitamin D, calcium and bisphosphonates, such as Actonel only seems to speed the osteoporosis up.

The only way to stop the confusion caused by hypercalcemia is to limit the amount of calcium in your mother's diet. I recently had a similar problem with potassium. I was crazy for about 2 months and was putting it down to anemia. However, when I found out it was potassium, limiting the foods containing potassium put my blood back into range and the symptoms disappeared.

Sorry to have been so long about replying. My mum is temporarily disabled following a major joint replacement and needs to be bathed, dressed and toiletted as well as fed etc. Plus, I have all the normal house duties to do such as shopping. In the middle of all this, an old friend died of hers died and I had to take her to the funeral, which took up a bit of time yesterday. I also had to get some extra special medication made up and had to deal with three pharmacists who were reluctant to release the medication to me. It took quite a bit of negotiation and several phone calls before I could get my meds, so I just haven't been on the computer much recently.

Sorry
Pris

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Sarcoidosis and the Body
Sarcoidosis is a "multiorgan" disease - meaning it almost always involves more than one organ. It's unpredictable and affects different people in different ways.

You can learn about the ways in which sarcoidosis affects the body in FSR's Sarcoidosis and the Body brochure.

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