Sed Rate 54

I was diagnosed with Sarc a year ago. I have stage one pulminary. It's only symptomatic in my lymphnodes between my lungs. Since diagnosis I have had it for a few months on my face (that lasted forever), and my joints are falling apart! The dry eyes are unbelievable! Sometimes I feel like my lids are going to rip my corneas off! I work for Optometrists and they always just say "you have no tears at all." I had my first follow up with my pulminologist last month. CT scan showed no change in granulomas. We went over all my symptoms: Constipation, extreme dehydration, dry eyes, dry mouth, horrible joint pain and muscle tightness.
She thought it must be sjogren's, but thought it was possible I could have RA. She said it's common for Sarcies to get it. All the tests came back normal except for my "Sed rate". Sjogren's was negative. She left a message that sed rate test was sensative and that i should retest at next f/u in December. I looked it up and that is my level of inflammation. It should be below 7 for a female. Yikes! I knew it was bad. I have taught fitness for 15 years. After lung collapse and knee surgery I have had to quit. Still work out on my good days, but sometimes that's only half the week, collectively.

Had battled feeling very down after surgery and weight gain. I feel like I'm starting to even out a little now. Only managing my health with diet, exercise and supplements. Trying to stay mostly anti-inflammatory and going to start seeing acupuncturist and chinese medicine specialist in December. I drive 4 hours to see my puminologist. Just wonder if I should drive the extra hour and a half more to go to Jewish. Doesn't sound like I'm that bad in comparison to others here. Body just never felt so bad. I'm too young to have so many aches and pains.

Does anyone know if the sed rate is directly related to RA?

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oh yeah.... Headaches, stomach problems and swelling are some symptoms I forgot to mention. My calves and hands swell pretty bad. And the headaches are almost daily. Migraines-monthly. I have already had H-pylori twice and C-dif once now. And stomach proplems are a daily thing with me. oh, and my potassium has been below normal for about 2 years now. And no one seems concerned about that....

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Hi Colaradogirl,

You seem to be seeing people who are very misinformed about sarcoidosis. Staging is only a guide. You can have stage 1 for the rest of your life, or it could progress. I am stage 2. I was stage 1 for many years and then it progressed and I have been stage 2 ever since. It really does not mean anything. You can remit from stage 1 to 3 supposedly, but very few people do.

The optometrists are right, you have no tear film in the eyes. Have they tested you with little strips of filter paper???? There is also a stain they can do in the eyes to assess dryness. You need to use artificial tears or you could end up with corneal ulcers. This is a symptom of Sjogren's Syndrome, but it is also common in sarcoidosis. Sarcoidosis has infiltrated the lacrimal glands and this is why they are not functioning correctly. It is also why you tested negative for Sjogren's Syndrome. You don't have it or the antibody test would have been positive. Therefore sarcoid granuloma have infiltrated the tear ducts, not lymphocytes as is the case with Sjogren's. They are both treated the same way, with artificial tears, lacrimal plugs or cautery. Just like Sjogren's lymphocytes infiltrate the salivary glands, so can sarcoid granulomas. So if you have a dry mouth, it is probably also being caused by the sarcoidosis.

Sed rate is a marker of infection or inflammation. Usually if you have an acute infection, the test will be much, much higher. The inflammation is being caused by the sarcoidosis. This is what is causing your highish sed rate.

RA is a very easy thing to diagnose. It is simply a blood test like the Sjogrens. The joint pain etc is also probably being caused by sarcoid, though few doctors realise that it causes these symptoms. It is unlikely you have RA to, but just to be certain, get a blood test done.

If you are taking supplements, be very careful. Sarcoidosis can significantly upset vitamin D and calcium metabolism and may contribute to inflammation. Vitamin D can even trigger relapses in some people with sarcoidosis and this has been proven in the laboratory although there has been no study to verify it in vivo. However, there is a significant body of anecdotal evidence, even on this site, that D and sun exposure can trigger flares of sarcoidosis. If you are not on any drug treatments, such as prednisone or plaquenil, both of which modify vitamin D breakdown in the body of sarcoid patients, then you need to be aware - that if not on these drugs, vitamin D can build up to toxic levels in some sarc patients. It can even lead to hypercalcemia and kidney dysfunction. These are a little known fact by the average doctor and even specialist, but many sarc patients are admitted to hospital each year with this condition caused either by sun exposure (this occurs only in severe sarcoid) or by doctors putting patients on D supplements. It is not uncommon for sarcoid patients to have very low levels of vitamin D. This is often mistaken for a deficiency by doctors. They don't realise that sarcoid granuloma make the hormone calcitriol from vitamin D and this hormone increases calcium absorption from food which is 1000 times more effective than vitamin D alone. We all make calcitriol daily, but our kidney breaks down any excess. The kidney does not break down calcitriol made by sarc granuloma and this is why it upsets calcium metabolism in sarcoid. If you are not on drugs like prednisone or plaquenil, both of which can break down excess calcitriol, then you need to be aware. If you are making excess calcitriol, any excess calcium has to be excreted in urine or faeces. You mentioned constipation. Excess calcium excretion in feces will cause constipation. Excess calcium excretion over time in urine can irreparably damage the kidneys. A lot of people left untreated with sarcoidosis often discover 20 years later that they have nephrocalcinosis. This is calcification of kidney structures and tubules due to calcium excretion caused by non-treatment of sarcoid over the years. Many doctors aren't aware of it. Patients are not aware either, since for the most part, it is asymptomatic. It can cause blood or red blood cells to occur in the urine. High calcium excretion also can lead to kidney stones. This is more common in men than women because testosterone has an effect on calcium metabolism also. If you are not on drugs, now is a good time to get your urine calcium, serum calcium, serum phosphorus, serum magnesium, serum calcitriol, serum vitamin D and serum parathyroid levels tested because prednisone and plaquenil obviously modify result of these tests. Many untreated sarc patients have high calcitriol levels or at the least, level which exceed the mean.

I have many of the same symptoms you mention. I used to have monthly migraines also. Migraines can be caused by vitamin D excess. It causes blood to thicken as excess calcium causes this. I have found avoiding sun has cut down my migraines significantly. However, you need to see a neurologist about these. I used to get two to three a month before I saw a neurologist. I have also had c diff and h pylori and been treated. Stomach problems can also be due to excess calcium. This is increased in nature if you have been treated for h. pylori. People tend to get acid post H pylori treatment. H. pylori actually helps with acid probs but it seldom returns once treated. I had calcium metabolism probs last year and had excessive acid reflux and epigastric pain. When tested calcium and phosphorus were on the upper limit of normal. Calcium crossed the limit between that and the next test. I had a mild episode of hypercalcemia with vomiting and weakness and a horrible bitter metallic tast in the mouth. As I am not on drugs to modify sarcoid either, within weeks my ACE topped 230 and I had a major sarc flare which necessitated prednisone for a week. I am against horrible drugs also, but sometimes they can help. I had a migraine where I lost partial sight in an eye and they found sarc on my optic nerve. I had little choice but to go on prednisone, but it got rid of it. When calcium goes up, vitamin D goes down and phosphorus goes up, as does ACE and sed rate. You need to watch all these metabolites in sarcoidosis.

Sed rate is not directly related to RA, it is a general measure of inflammation caused by inflammatory or infectious disease. My sed rate was raised for four years before I was diagnosed with sarc.

Loss of potassium usually occurs via the intestine or the kidney. Have you been assessed for Crohns, IBS??? Have you had a kidney function test lately? Low magnesium levels can also lower potassium. It is strange that you are taking supplements and should have this problem. This should ring alarm bells for doctors. Low potassium could be affecting muscles adversely. Potassium and calcium are two of the most stringently regulated elements and electrolytes in the body. They have a very narrow range outside of which, bodily malfunction can occur. It can even affect the heart muscle adversely. You should have a holter monitor test to make sure it is not impacting your heart.

You should have a cortisol and ACTH test done as well. High levels of cortisol could cause loss of potassium. You are not on prednisone which is good. However, your own body could be producing too much and this could account for your weight gain also AND for the mucous membrane dryness. Of course, this could be the sarcoidosis too, but if you have adrenal problems it could be making the dryness worse. So ACTH and cortisol should be done. I cannot believe your docs have been uninterested in this along with your other symptoms, but I never found docs reliable - you have to become a good-self advocate in order to survive the medical profession. Most of them know diddly squat when it comes down to it. Get the tests done because sarcoid can infiltrate the adrenal glands or the pituitary gland also. This is far more common than doctors realise. Although the adrenals are rare to be infiltrated by sarc, it is more common for the pituitary to be infiltrated. I have had it myself. In my case it upset the prolactin hormone. Other people get ADH hormone impacted and end up with diabetes insipidus.

So to investigate calcium metabolism to stay kidney safe while not on any drugs get the following:

serum vitamin D
serum calcitriol also known as 1,25D (this is normal in 99% of people but it can be abnormal in sarcoidosis and is a measure of sarcoid activity if a doctor queries why you should have this test)
serum calcium
serum phosphorus
serum parathyroid hormone
urine calcium

because of the low potassium, weight gain, muscular problems - and dry eyes and mouth get the following:

serum ACTH
serum cortisol
serum magnesium
holter moniter or ekg

to rule out RA

get RA serology tests done


To confirm active sarcoidosis as per raised sed rate

serum ACE or
Interleukin 6
serum calcitriol ( this is also a measure of sarcoid inflammation - not of vitamin D and is often raised is sarc patients who have increased inflammation) some sarc savvy docs are now doing it as a matter of course. Pred brings down these tests so it is better to get them done off any standard drug treatment.

If you do have high calcitriol and low D, you will need to watch sun exposure. You don't need to monitor calcium.
You may need to watch D intact including fish oil sups. Fish oil contains D.

All the best
Pris

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Wow! thanks for all of your time, and info, priscurl! I really appreciate it!!!

I did have an endoscopy done after diagnosed. Acid reflux is the only diagnosis. I had the scratch tests done for food allergies and have knocked them out. (there were lots) I just got tested for kidney, liver and other organ functions and all was normal. I am not taking any supplements that contain Vitamin D or calcium. I have knocked out almost all dairy and any foods that are fortified with D or calcium. I do limit my exposure to sun as well. The ODs here take very good care of me and have done the filimint paper tests and dies. Not too necessary to test for dry eyes as we know they are. I have a regimen of steroid drops and wetting drops. I do have a lacrimal duct that keeps getting "infected". We are treating it on and off with Moxeza and sometimes oral antibiotics (not tolerated well). I get it a little better and it comes back. You may just be onto something with that granuloma idea. Never thought of that. Damn!

My Pulm. dr. is ordering a second Sed Rate in Nov. as well as a CRP for RA. And my PCP has ordered the thyroid tests. I will print out your post and take that to my dr. and see if I can get orders for all that other stuff. Please feel free to send all the advice you have. I soooo apreciate it!
Les

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Great info priscurl. I was going to suggest she have her calcium and vitamin d levels check as I had a lot of the same symptoms. It was only after I developed hypercalciumea due to sarcoidosis and had to be admitted to the hospital to bring my levels back in check that I got an type of relief from the dry eyes (felt like I was constantly in a sand storm), almost no saliva ( I couldn't even say 3 words without having to drink water), had stomach pain and couldn't even eat more then a few bites before I felt full (when I could even keep food down), the dehydration from the hypercaliumea put my kidneys down to 25% function. I am grateful for my internist who had the knowledge to start doing the blood work and kept an eye on me because my levels kept rising. I am know on 15mg of prednisone. I was on 40 mg but my calcium is back to normal levels so they tapered me back to 15mg. I now have no problem with dry eyes and my saliva production is good, and my kidney function is back to 100%. I do walk around with a water bottle though because part of keeping my calcium at bay is to make sure I don't get dehydrated. I also talk potassium and magnesium supplements because I am also on lasix to keep the water retention from the prednisone at bay. The fun we have trying to keep our bodies in balance because of this disease.

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