What Happens With Vitamin D?

I was just wondering what happens to sarc people when you get too much sun or Vitamin D? I've been told I have fibromyalgia and for the last few days I've been pretty sick. I was told that I should take Vitamin D because I was in the normal range,but a bit low. I was told that this would help with the body aches and shooting pains. Well I'm still waiting and the pain seems to be getting worse. The last few days I felt really warm,my chest and back hurt,I'm so tired I have to take a nap at 2:00 in the afternoon! My face is red and I just feel sick. I'm going to University of Chicago Medical Center to get more opinions. I've had it with feeling this way and the fibromyalgia thing is crap!!!! If anyone has been diagnosed with fibromyalgia don't waste precious time if you don't believe the diagnosis. Do your own reasearch and listen to your body. Nobody knows how you feel so be your own advocate. I'm learning that and now I'm moving forward full blast!!!!!!!!!!

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There are numerous threads on Vit D in our archives which is probably the best collection of info on this issue in one website. Just use the 'Find It' window at the upper fight of this page access a tearsure trove of info on this and so many other sarc issues, too.

Good journey,

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They likely are right with the fibro DX.

BUT you also may have neurosarc that was the trigger for the fibro.
Do you have neuropathy, sleep apnea. sleep disorders.
Many people with autoimmune disorders get fibro.
more so with sarcoidosis(50+%)
This is because sarcoidosis hits your body in so many ways neuro, hormone, thyroid, along with the granulonas.
Any of these can and have in many people triggered fibromyalgia.
if you are going to one doctor for sarc and another doctor is saying fibro it likely is they your whole problem is being underDX because each is just dealing with there specialty.

With my sarc i have 5 doctors dealing with my sarc.
a chest guy, a dermatologist, a hemotologist, and a rheumatologist plus my primary care doctor.

luckly i go to the VA and all my doctors can view all my medical records on the VA computer records system.

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Hi Marn32,

Fibromyalgia is a good catchall on which numerous symptoms can be lumped together and blamed for illness. Was it a rheumatologist who diagnosed it? Did you have the trigger point test? Do NSAIDs or prednisone help with any of the pain blamed on fibro? Are you a poor sleeper?

I suggest you do some research on fibro and make up your own mind.

One rheumy tried to pin me with the diagnosis, but he had not done his job properly. My blood tests a few days earlier showed eosinophilia and raised ESR. He sent bloods to a different lab and they came back normal. A week later the bloods were abnormal again. If you feel the doctor is wrong, then you are probably right.

The fact that you have a red face and feel hot sounds to me like a sarcoid flare.

Vitamin D ingested by a sarcoid patient can be converted to the hormone calcitriol by an enzyme made by sarcoid affected tissue. Calcitriol is also made by a similar enzyme in the kidney, but the kidney can detect when there is more than enough calcitriol in the body and break it down. Unfortunately, the kidney in a sarcoid patient cannot break-down the calcitriol made by the sarcoid enzyme. This calcitriol rises to abnormal levels in some sarcoid patients and this has knock-on bodily effects which include the following:

1. Calcitriol causes the bone marrow to make and mature more monocyte cells.

2. Calcitriol causes these monocyte cells to come out of the blood stream and form more sarcoid granuloma.

3. Calcitriol is a hormone and it has immunosuppressive qualities so it suppresses the immune system almost as well as prednisone. This allows sarcoid to proliferate.

4. Calcitriol is a hormone which should bind to the vitamin D receptor - its natural home receptor. When there is too much calcitriol, it begins to bind to other hormone receptors and blocks the action of hormones which should bind there. This messes up the body's metabolism. It is possibly the reason sarc patients have thyroid, adrenal, parathyroid, pituitary issues.

5. Calcitriol's best known action in the body is to help us absorb calcium from our diet and make new bone. Under normal circumstances, when the kidney is the ONLY producer and regulator of calcitriol, this is what normally it is normally supposed to do. However, in sarcoid, we have the issue where the kidney is not the only producer of calcitriol and the kidney enzyme is unable to break excess sarcoid-made calcitriol down. So sarcoid patients can wind up with excess levels of calcitriol in the bloodstream.

6. Under the influence of calcitriol excess calcium can sometimes be absorbed from food. As this is surplus to need, so the body has to excrete it and it does this via the kidney. Undetected over a lengthy period this can cause calcium to be deposited in the kidney causing stones and even interfering with kidney function.

7. Under the influence of calcitriol the bone marrow hastens the development of bone cells called osteoclasts. These bone cells break down bone and release the minerals back into the blood stream.

8. Over time the bone of a sarcoid patient contains more osteoclasts than osteoblasts, the cells which form new bone. This means that for the sarcoid patient, bone is being broken down and the calcium resorbed back into the blood stream. This hormone has a far greater impact on bone than prednisone which actually converts calcitriol into a D metabolite that does not have any action on the bone. So in this sense, prednisone is protective. High calcitriol levels over time will eat up bone. If calcitriol levels build to high levels so much calcium can enter the blood stream that the kidneys are overwhelmed by the amounts it needs to excrete to keep balance. At this point, calcium, which is an electrolyte, begins to interfere with electrical systems within the body can can cause cardiac arrest. Muscles will become weak and eventually calcium will cause coma.

The sun on its own rarely causes such an event and the subject affected will be more likely to be male than female. This is because the kidney enzyme which breaks down excess calcitriol made under normal and not diseased processes, is down regulated (lessened) by male hormones like testosterone. This makes men more prone to calcemic problems than women.

However, as calcitriol is made through enzymes systems, it is substrate dependant. Substrate is a chemical which enzymes act on. The higher levels of substrate available means higher levels of enzymatic action and ultimately higher levels of product. Giving exogenous synthetic vitamin D is the substrate for the 1 alpha hydroxylase enzyme made by sarcoid tissue. The greater amount of substrate, the more product - calcitriol, can be made. Women being prone to osteoporosis are therefore at greater risk of being given synthetic forms of supplemental vitamin D.

In most prescribed vitamin D now there is a warning to tell your doctor you have sarcoidosis before taking the medication. Sadly few doctors know about this fact of sarcoidosis.

Although the kidney enzyme cannot break down calcitriol made by the sarcoid tissue, there is another hormone involved in calcium metabolism. This hormone is one made by four parathyroid glands near the thyroid in the neck. In sarcoid, the parathyroid gland detects high levels of calcitriol in the blood of the sarcoid patient. Normally, the parathyroid hormone stimulates the production of vitamin D in the liver when calcium levels get low. When calcium levels are replete the parathyroid level in the blood decreases. In sarcoid patients, what happens is that the high calcitriol levels in the blood become sensed by the parathyroids. It stops sending out its hormone for vitamin D to be produced in the liver because there is calcitriol surplus to need and possibly calcium surplus to need. If a doc tests the blood of the patient for vitamin D at this time, the patient will appear to have a low level. Without testing for the two other hormones involved in calcium metabolism, the doctor thinks that the sarcoid patient has a D deficiency and prescribes vitamin D. This just provides more substrate to produce more calcitriol and this will drive parathyroid hormone levels and vitamin D levels even lower. It can even cause life threatening hypercalcemia. It is wrong for a doctor to assume that a low vitamin D level in a sarcoid patient is a deficiency. If the doctor had two patients, one of them with sarcoidosis and the other without sarcoidosis and he took blood from each of them and found both their Ds to be low, in both cases it would be wrong to conclude that both had a vitamin D deficiency.

Further testing of both patients should help bring the doc to the right conclusion. If the doctor also did calcitriol and parathyroid hormone levels on both patients it would easily lead him to the right diagnosis and correct treatment. The low D level in the non sarcoid patient might be attended by a slightly elevated parathyroid hormone level. In most cases, the calcitriol level will be within normal range.
So the low D, normal calcitriol and slightly elevated parathyroid hormone level point to a mild vitamin D deficiency in the non sarc patient. In the sarc patient, the low D level is accompanied by an abnormally raised calcitriol level and a suppressed or very low parathyroid hormone level. This indicates a vitamin D and calcium disorder caused by sarcoidosis and does not indicate a deficiency. In fact, it is the opposite of deficiency and giving such a patient vitamin D, or vitamin D with calcium will only make the sarcoid patient sicker, destroy more bone when the object of the treatment is to build bone up, and could potentially cause cardiac arrest, coma, hypercalcemia, kidney damage leading to kidney failure. Even if the sarcoid patient survives it could also damage the parathyroid gland of the sarcie leading to a problem where too much parathyroid hormone is produced permanently. Many hypercalcemic sarcies later end up with hyperparathyroidism and this can only be controlled by operating and removing the glands.

So yes vitamin D can make a person with sarcoid more ill by proliferating granuloma, causing hormonal imbalances and potentially causing problems with calcium metabolism.


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Thanks Pris,
I always take notes when reading your info.

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Thanks to you all for all the fabulous information on vitamin d. I do believe that I may have fibro,but I do believe there is more going on. Whatever it is it's getting worse...the chest pain(deep ache in lungs?)and all the other stuff. Thanks again for all the input!!!

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Pris - you are an amazing source of info. marn32 - I've heard that UIC is a great place to go for sarc.....

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