Red Flags to vitamin D supps in Sarcoid.

Hi people

I am seeing people report some alarming things on the forum.


With regard to vitamin D and calcium levels, we all should know that the chief purpose of vitamin D is to cause absorption of calcium to make bones strong.

OK so far???

There are two forms of vitamin D both measurable in blood . The first called 25D is the store form and the other called 1,25D is the active form.

Both these forms of D are made to help us absorb calcium from food, but the active form of D can also make us resorb calcium from bone.

Calcium and D form a balancing feedback circuit in the body. When calcium is becoming high, we make less D; and when calcium is becoming low we make more D.

In health, Ds and calcium are well within normal range.

Sarcoidosis is a disease known that causes disturbance to the balance of vitamin D and calcium.

It does this by depleting store forms of vitamin D (normal or 25D), abnormally raising active forms of vitamin D (1,25D), and pushing up levels of calcium.

If however, you have osteoporosis or vitamin D deficiency you need more D in order to absorb more calcium. Therefore, in a bid to keep active D (1,25 D) at a normal level, and in order to absorb more calcium, ordinary or store D (25D) is depleted.

The mechanisms are completely different. If you do 25D tests alone, in both deficiency and sarcoidosis these levels are low. However, they are low due to polar opposite reasons.

The 1,25D or active form of D (which is rarely tested and only ever abnormal in disease states like sarcoidosis) is fairly often abnormally high in sarcoidosis. It will NEVER BE HIGH if you are in a vitamin D deficient state. It will be low or normal if you are D deficient, but if you have active sarcoidosis and are not currently on sarcoid meds, your 1,25D could be high.

Another test that can help differentiate D deficiency from sarcoidosis is the parathyroid hormone level or PTH. PTH helps to balance calcium in the body which is absorbed in the presence of vitamin D (1,25 D and not 25D). When calcium levels are high, less parathyroid hormone is triggered. When calcium levels are low, more parathyroid is triggered in order to synthesise more D.

Therefore, another means of finding whether your 25D is low because of deficiency is by doing a parathyroid hormone level.

If you are D deficient, the PTH or parathyroid level will be high or at least at the upper end of normal.
However, if you have active sarcoidosis and a high 1,25D level, your PTH will be low, signalling that you have a calcium level which is getting high and stopping D production. Your D is low because you have too much calcium.

So if you have sarcoidosis, and your doctor refuses to do 1,25D or PTH levels, try to find out what your calcium level is.

If your doctor announces to you that your 25D level is 13 and you need to go on D supplements ask them what your calcium level is.

If your calcium level is 4, then it will be reasonably safe to go on D. However, even if your calcium level is within normal limits, if it is toward the upper end of normal range then it is highly likely your sarcoidosis is not under control.

If your doctor tells you your D is 6 and your calcium is normal but 9 or 10 (Upper end of range is about 10.5) then you are highly unlikely to be deficient in D. Remember, we need D to absorb calcium. If calcium is the upper end of normal with a low D, you are not D deficient and do not need supplements. Taking supplements could push calcium out of range within a few weeks.

Here is another tip. Look at your CBC. 1,25 D affects the way sarcoidosis patients make blood cells and what these cells do. If you have a high 1,25D level with sarcoidosis, certain blood cells come out of circulating peripheral blood to form granulomas. This is reflected in the blood count, particularly of people who have CHRONIC sarcoidosis.

Look at your lymphocyte count which is in the differential CBC. If you have an abnormally low lymphocyte count, or low % lymphocytes in your count. It is increasingly likely that you will also have a high 1,25D level, which means that your 25D is low due to highish blood calcium levels, rather than low blood calcium levels.


Remember Sarcoidosis

low lymphocytes
highish calcium level
low PTH
low 25D
high 1,25D

Vitamin D deficiency

normal lymphocytes
lowish calcium
high PTH
low 25D
lowish or normal 1,25D

If you have a highish calcium with a low D level it is probably due to sarcoid. Taking D will drive 25D lower and calcium higher. This is dangerous.

If you have a low D due to deficiency, you should expect a calcium on the other side of 5.

Please be careful. I have seen doctors tell patients they were D deficient when their calciums have only just been in normal range. You cannot have such a high calcium and be D deficient. Question your doctor if your calcium is at the upper end of normal when your 25D is low.

Pris

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22 replies. Join the discussion

As usual if you need anything that pertains to Vitamin D you are the resident professional and I applaud the many hours of dedicated time it must take for you to work hard on all our behalf to get this information. I for one appreciate this work and thank you. Is there any one test more sensitive to our needs than any other that might help us to deal with our problems?

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Hi rarity,

With sarcoid, we don't have a sensitive, definitive or simple one-size-fits-all test that tells us we have sarcoidosis, or tells us that sarcoidosis is active. If there were such a test, patients wouldn't suffer quite as much as they do, and doctors wouldn't prevaricate quite as much as they do, telling patients their sarcoid isn't active, when it probably is. Until there is a test that eliminates grey areas, this suffering will continue to happen.

Sarcoid is likely to become active when off all meds or when on lower doses of meds.

My main concern here was to help sarcies with treatment decisions. What I am basically saying is this:-

We know sarc causes problems with D and calcium for one in 6 of us. One clue which can alert both doctor and patient to look further for this problem is an abnormally low lymphocyte count or percentage. This is because high 1,25 D levels in sarcoid directly affect numbers of lymphocytes in peripheral blood.

Therefore, if a doc tells you that you have a low 25D level, ask them what your calcium level and lymphocyte numbers are like.

If you have a low 25D with a calcium of 9 or 10 and/or a low percentage of lymphocytes it could be a sign that you have sarc that is active and uncontrolled. Taking D supps could be dangerous.

On the other hand, if you NEED D supps, your calcium level will be lower, around 5 or under, and your lymphocyte numbers and percentage are more likely to be in normal range.

It is also a guide for people whose doctors refuse to test the 1,25D, and PTH. If a doctor won't do these further tests so that you can tell for certain whether you have a bonafide D deficiency or whether your low D is due to 1 alpha hydroxylation caused by sarcoid, you can help decide for yourself whether it is safe to take D on the doctors orders.

If calcium is well above 5, around 9 to 10, it may not be safe to take high amounts of D. If calcium is over 10, you should definitely not take D. If lymphocytes are abnormally low, you probably have 1 alpha hydroxyl conversion from sarcoid which could cause high calcium levels if you take D supps.

Upper end calcium and low lymphs could be a sign of sarcoid activity and 1 alpha hydroxylation of 1,25D which can lead to hypercalcemia on supplements.

I mention this because a few people are being placed on D supps when calcium is 9 or 10. 10.5 is abnormally high. If you truly need D, your calcium is going to be less than 5.

In even simpler terms; Low D should = low calcium.
If this isn't the case, something is wrong. You must question it. Don't expect your doctor to know.

If you have sarcoidosis, it is sarcoidosis which is causing the problem when your calcium is at the upper end of normal while your D is low.

Pris

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Pris,
I applaud you for the many hours you have written and re-written this important information.

My iodized calcium levels are not that high, and raised slightly more since taking out 95% of calcium intake, dairy. But loosing a lot of bone, found by mistake. So pcp says surgery is back on. I am to get a name in a couple of weeks of a very well experienced surgeon and then a consult appt.

Pris, I hope that parathyroid is a huge calcified rock! Then if not sarc I have some form of granuloma disease.

Take care and hope you are doing well or as well as you can be.
GN

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My pulmonalogist requested just the calicum and ACE blood tests. I have MGUS and thus am being monitored for Multiple Myeloma. I always ask for a copy of my blood tests and keep an excel file on them. So from my blood tests ordered by the hematologist, I know that my calicum was last 9.5 and my lymphocytes was 1.4. I go back on Wednesday to the pulmonalogist to get the results of the test. He told me to stop taking calicum with Vitamin D when I saw him last. Now I understand why. Thank you.
Should I be asking him to do more than the calicum and the ACE test when he is monitoring?

Thank you for writing this, I really appreciate it!!!!!

Carol

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Pris,
I took the info you gave me to my dr...she ordered the other blood test for 1,25d immediately...it came back normal (I'm going to get copies of all these tests) and she insisted i need the vit d. I am taking 100,000iu once a week for 8 weeks...i've done this for 4 weeks now...I see the pulm specialist in 2 weeks thank God...my question to you (and anyone else) have you ever heard of side effects for this high a dose? Since taking this I seem to be getting worse and strange things are happening. I lose energy extremely fast...to the point i have to force myself to move...I lose my train my thought frequently...I forget things in the middle of the conversations...acid reflux sets in within 24 hours after taking these....burping is sooooo much fun....I have understanding co-workers...I know the sarc has spread but i just seem to feel worse each day, when the dr tells me I should be feeling better. We have to trust our dr's to a certain extent but I'm getting ready to not take these anymore until I see the specialist! As usual your posting was awesome!

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Pris,
I too thank you for all your untiring efforts in educating us on this vitamin D issue. I was told 6 months ago to start taking vitamin d supplements with calcium. I didn't know enough about this issue at the time so I chose not to take the vit d. When I saw my pcp in December and had blood work done, she gave me a prescription for high level vit D (I don't remember right now how much ) and again being confused over the issue, I didn't fill the prescription. I was referred to a specialist this month by my pulmo and as part of my blood work, he tested my calcium levels. I haven't had my report from him yet but I see my pulmo this week and I'm sure he'll have the report and we can proceed on the vit d issue then. I hope you don't mind my printing your post and giving it to my pulmo this week if I need to. Your post makes perfect sense to me and I thank you for continuing to address this issue for us..
Roxanne

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Hi Pris,
Another great job of explaining! I have a question for you, what if it is a mixed bag.

I have a fracture that hasn't healed in almost a year with additional stress cracks. The endocrinologist went beyond the CBC to 24hr urine tests.
First is freaky high volume, (over 9 ltrs).
High calcium, High PTH, low 25D, low 1,25D. (cbc low lymphocytes)
My pulmo says treat the numbers can be off because of chronic prednisone use and treat the D deficiency. Endocrinologist has me in 2000iu a day, on top of 1200 calcium plus 400 D.

Can the prednisone explain the odd mix of numbers?

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Pris,

You are so kind & patient to explain this over & over. I am usually really good w/medical things, but for some reason I just get a mental block w/this Vit D/Calcium thing. Let me just throw this at you: my dr said I need Vit D/Cal supplements cause I'm low (plus on Pred). My labs said 25-Hydroxy D Total=21 & Ionized Calcium 1.15, Normalized Calcium 1.18 (appears all 3 things are below normal). So does that sound right that I SHOULD be taking supplements?

Thanks for your insight.-Jayne

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Hi Brenda,

Although many doctors don't know about calcium metabolism problems in sarcoid, some do know it can go awry, but many of these don't know that a sudden surge in D can actually activate quiescent non active sarcoidosis.

If you have noticed acid reflux occuring recently and it wasn't there before you started the vitamin D, it could be due to higher calcium levels which stimulate production of stomach acid. Although calcium is a good acid neutraliser, used regularly it is useless for something like GERD, because calcium stimulates acid production.

If you have sarcoidosis, whether your Ds and calciums are normal or not, you always have the POTENTIAL to have a problem with D and calcium balance. People with sarcoidosis cannot regulate levels of vitamin D like healthy people. When you put supplemental D into a system which already has a faulty regulatory mechanism, you are at increased risk of health problems. A normal healthy person with a mild D deficiency will not have any problems or risk associated with taking vitamin D at recommended dosage levels. They can take it until the cows come home and it will NEVER get out of range.

If you have sarcoidosis, there will always be a tipping point where D will cause too much calcium to be absorbed and resorbed. This tipping point will be reached much faster than a healthy person taking a dose higher than recommended levels. The other thing about 1,25D levels going up, is that this can trigger a relapse of sarcoidosis, because it signals to blood cells ''Form granuloma''.

I would advise you to get a serum calcium level done and an ACE. If you experience urine frequency and thirst, see a doctor immediately.

Pris

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Hi teacherteacher,

Man, this is scary.

You need to get to your doc right away and get a serum phosphate and alkaline phosphatase done.

Have you seen your doctor since you have had these tests????

This looks to me like hyperparathyroidism.
High calcium and high PTH = hyperparathyroidism.
Prednisone would affect the 1, 25D tests true. However it looks to me like both PTH and Calcium are raised due to hyperparathyroidism. Because your calcium is sky high, the Ds are low. We need D to absorb calcium, but the last thing YOU need is more calcium. The high volume of urine reflects the fact that you are drinking and peeing more in order to rid calcium from your body.

You haven't given me actual numbers, so I cannot know how bad this actually is. If the numbers are just abnormal, get the phosphate done and if it is low it will confirm hyperparathyroidism.

If the numbers are super high stop taking calcium and D now.

The high calcium and D are not being caused by sarcoidosis, because prednisone always reduces these numbers if the cause is raised 1,25D levels from sarcoid. Prednisone doesn't cause hyperparathyroidism.
If hyperparathyroidism is secondary to D deficiency, D will bring the PTH numbers down, but it hasn't in your case.

If you were put on D for fractures and they haven't healed, then it is likely that you have had hyperparathyroidism for some time.

A low phosphate or phosphorus level will confirm it.

Pris

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Hi Jayne'sinpain

Yes Jayne, it is safe for you to do the D thing, especially while on prednisone. Just keep a watch on your calcium though, with sarcoidosis, D and calcium is not regulated as well as in healthy people and a low calcium level turns around much quicker into a high one. You need to be on guard.

Pris

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Pris, I cannot thank you enough for all this information. Because of your information on lymphocytes , I looked through my med. records and found a CBC with Diff done back in April 09 at an ER visit because I had viral gastroenteritis. My Lymphocytes were 2 percent and monocytes 2.7 percent back then. That seems awfully low to me. Granted, I was fighting a bug, but I would have thought they should have been higher under those circumstances? I also noticed my white count was 15,000 with 94 percent neutrophils. I looked up neutrophils, and that seemed high, perhaps because of the bug.

Anyway, I fashioned a very polite letter to my Doc, and told her of my worsening PVC's, dyspnea and now dizzy spells, along with all this info on vit D. Hopefully, I will get the tests ordered to finally nail this thing down before it kills me. Even if it turns out I dont have Sarcoid, if she learns some stuff in the process, it will be well worth it.

Karen

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Thanks for response. Will do.

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Hi Jayne,

Make sure you keep a check on serum calcium.

Many doctors are of the opinion that low D always equates with deficiency. This is the case in the majority of patients they see, but special care should be taken with sarcoidosis patients. Many doctors are unaware that special care needs to be taken with sarcoid people and that low D level doesn't rule out parathyroid problems.

We have seen at least 20 FSR sarcies wind up in hospital with hypercalcemia when supplemented with D. Luckily prednisone will make them better rapidly. However, even sarcoid does not exclude the fact a patient could have other problems. We have now had two recent patients who turned out to have parathyroid problems. Both these patients were given D. If D does not correct problems and calcium and parathyroid levels are off the scale warning bells should be sounding. I really don't know how a person can suffer for so long and an endocrinologist not realise their patient had a significant problem. It is abominable.

Pris

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ATTN TEACHER TEACHER

Please read this, print it out and take a copy to your doctors along with recent tests.

http://www.parathyroid.com/low-vitamin-d.htm
Here is a segment below.

67% of all patients with primary hyperparathyroidism will have LOW Vitamin D-25 Levels! This is 1039 patients out of 1587 in our study. 594 patients (38%) had levels below 20 ng/ml with an average Vitamin D level of 14.6.

33% of all patients with primary hyperparathyroidism will have NORMAL Vitamin D-25 Levels (above 30). Their average Vitamin D level was 35.3 ng/ml.

0 % of all patients with primary hyperparathyroidism will have HIGH Vitamin D-25 Levels (we've only seen it a dozen or so times when examining Vitamin-D levels in over 8000 patients with parathyroid tumors).

As the calcium level increases, the level of Vitamin D-25 decreases. The following graph shows this nicely. When we look at 1587 patients with a parathyroid tumor (we know it because we removed the tumor and gave the patient a picture of it), we see that those with higher calcium levels tend to have lower Vitamin D levels. As you will read below, this is because the body is trying to protect itself from the high calcium, and it is converting one form of Vitamin D (Vit-D-25) into another form (Vit-D-1-25). This serves to decrease the amount of calcium absorbed from our diet, to keep the calcium from getting even higher. Read that again... the body is protecting itself from the high calcium.

THIS BIT IS VERY IMPORTANT

It does this by decreasing the amount of Vitamin D in our body so we don't absorb as much calcium in our diet. As you can see from the graph below, the higher a patient's calcium goes, the lower the Vitamin D goes.


PLEASE, PLEASE BE AWARE THAT LOW 25D DOES NOT ALWAYS MEAN DEFICIENCY.

D, calcium and PTH maintain a balance. When one of these is out of wack the other two will try and rebalance the body. They do this by lowering or raising.

Thus, when D is low PTH will be high

When calcium is high; either Ds, or PTH, will be low.

When PTH is high, either calcium, or Ds, will be low.

These four are a set. Only when these four analytes are done together can you and your doctor determine whether you are getting the correct treatment.

Low D is no reason to go straight for the supplements. There is more than one condition which cause low D levels, only one of these is able to be fixed by D. The other two conditions causing low D, i.e. sarcoidosis and hyperparathyroidism can be made much, much worse by taking D.

The tests you need to do before sticking a pill in your mouth are;

25D
1, 25D
Calcium
PTH.

DEFICIENCY
You take D ONLY when Ds are low, calcium is low and PTH is high.

HYPERPARATHYROIDISM
You should never take D when Ds are low, calcium is high and PTH is high.

SARCOIDOSIS.
You also should not take D when 1, 25 D is high, calcium is highish and PTH is low.

Please learn these patterns because doctors are not recognising them.

Pris

PLS DONT print what I write. Only print references which I give you.

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Teacher Teacher,

Please understand that prednisone would not affect Ds to that extent and would not affect 25D at all.

See the article. Pls take article and tests to doc.

Ds low with high PTH and Calcium means you need to have more evalution. Please print out the whole article above. Note that is says that doctors think giving D and Calcium will help. It is NOT helping. It should have helped by now, even with prednisone.
Taking D should bring PTH lower. It hasn't. Prednisone should help sarcoid calcium problems. It hasn't. Your Calcium and PTH are HIGH and you are peeing huge amounts in order to expel calcium. Your Ds are low to stop calcium being absorbed into food.
Get a new endo and now.

Pris

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Thanks again for keeping up informed about this issue! my docs have never ordered a D- either type. BUT, after working as a nurse for 20 years, I know better than to take D and Calcium, unless I am on Prednisone! I have never had a urine calcium, but I can tell when it is high- as you said- peeing huge amounts and being thirsty indicates a problem with excess calcium in the urine, just as it can indicate high blood sugar in diabetics. The body tries to flush out the excess via the urinairy system. My alkaline phosphatase has been elevated for years. My blood calcium wa 9.7 at my last visit. My doc said it was normal. And that I needed to supplement with calcium and D to prevent osteoporosis. I said no! I plan on having copies of the articles that you referred us to in hand when I next see my docs! My dentist also wanted me to start on calcium and D suppliments, due to dental problems! Your articles will benefit him, also!

Most scary of all- there is a clinic here in my town that offers "nutrition therapy" for auto-immune diseases. They treat sarc. With huge infusions of a vitamin and mineral mixture, given intravenously weekly !!!
My rheumetologist wanted me to try it, and said it was harmless. At the same time, he had me taking methotrexate injections without giving me folic acid supplementation!

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Hi Bgreis,

Yes it certainly is scary when doctors don't know what the unsuspecting patient thinks they believe they know. But, doctors are human and cannot know absolutely every nuance of every disease. Patients need to learn about their disease themselves if they are to make rational treatment decisions in tandem with the doctor. This is often easier for nurses or paramedics than it is for the average patient, at least they have a little knowledge, and can get up to speed with medical terminology much faster than a mechanic or checkout chick. They are also less daunted by it.
My mother is a nurse too, and she has told me some horror stories. I applaud you for making your own calls on things when you know the doctor is ill-informed. This takes a lot of courage, but it is also typical of the plucky nurse. Doctors would call you renegades, and indeed, at the beginning of my mother's career, you daren't question a doctor. Thank God there is no law against it now, or there'd be fewer people on planet earth. There was a story on our news tonight where a woman was suing a doctor for causing nerve damage when a drill he was using on her slipped during an operation on her spine. It has subseqently come to light that this same doctor had been twice suspended by the hospital for negligence, had been found taking illegal drugs and had had a woman die of a drug overdose in his apartment. The hospital is still ''investigating''.

Pris

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My husband's Vit D,1,25 is at 65
Vit D 25 is 30
PTH under 3
Calcium is 10

Internist took him off fosamax(his bone scane showed osteoperosis) and all supplements. Should we question fosamax use since it prevents resorb?

He's had sarcoid for 26 yrs, neuro,eyes,lungs,heart, bones --- current major issue is pulmonary hypertension

Thanks!

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Hi Jane,

Does your husband currently have an endocrinologist or sarcoid specialist, i.e. not a pulmonologist?

Your husband really needs to make an appointment with the person who originally prescribed the Fosamax for him.

I am not sure what the internist's reasoning is and I don't know what supplements your husband was on before the internist took him off them.

Your husband's sarc is chronic and systemic; and people like your husband are at greatest risk for 1 alpha anomaly D and calcium dysresgulation caused by granulomatous disease.

Your husband's calcium in borderline high and his PTH is clearly suppressed. This is what one would expect with extensive granulomatous inflammation. Despite the fact that your husband's D is low, his 1,25D shows increased lung inflammation and conversion of 25D into 1,25D. This 1,25D does cause resorption of bone, and this will result in osteoporosis.

Fosamax is a drug designed to prevent bone resorption in osteoporosis, but it is also used in sarcoidosis for the same purpose. Indeed, 1 alpha causes much faster rates of bone resorption that common old garden osteoporosis, and unlike osteoporosis, vitamin D will hasten the effects more if taken, so if your husband has been on D, he is wise to stay away from it, and don't let any doctor, no matter how many shingles he has on the wall behind him, con your husband into recommencing D or calcium supps. Calcium supps are likely to cause bone calcifications, kidney stones and arterial depositions. Your husband already has pulmonary hypertension. Arterial calcifications can break off in such circumstances and block vessels. This would be catastrophic, and has been grounds for suing doctors in the past (I have just discovered).

Pris

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