by Pam.

My doctor tells me I have a very high vitamin D level. He says Sarcoidosis makes the level go high. Unfortunately, I always seem to find doctors who are never good at telling the levels of lab results to the patient as if it's none of the patient's business and I do resent that. Next time I see him, I will be armed with a notebook full of questions!!!

Any way, is there anything I can do to counteract that high level and anything the doctor could do to help counteract it? I'm staying out of the sun as much as possible but it looks like so many foods have vitamin D in them...I don't understand how anyone can be deficient. I have very itchy skin (especially my back),nausea,irritability,trouble sleeping,my eyes itch and burn(also,red from broken vessels)and some blurriness. Can't seem to lose weight,either. I'm on Prednisone 10mg for the Sarcoidosis, Synthroid 50mg and Valtrex for Shingles. My doctor seems concentrated on the Sarcoidosis because it affects my lungs but right now I'm more concerned about the effects on my eyes. Any advice would be greatly appreciated. Thank you, Pam.


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You've misunderstood
by: Kerri Knox, RN- The Immune Queen!

Hi Pam

You've misunderstood what your doctor told you and you don't fully understand your condition. You do NOT have a high 'Vitamin D Level', you have a high 1,25 OH D level which is not vitamin d, but an active form of it in the blood.

In your case, sarcoidoisis causes a defective 1,25 OH D metabolism whereby this level goes up independant of how much vitamin d you get.

While you shouldn't take EXTRA vitamin d because this can make it worse, avoiding vitamin d is not going to make it better.

Kerri Knox, RN

Sarcoidosis and Vitamin D
by: Pam.

Hi Kerri,
Thank you for the reply. That's ALL my Doctor said...was that I had Hypervitaminosis D and that Sarcoidosis causes that. Like I said...a lot of doctors are just not any good at talking to their patients. So, there's no way to counteract that or possibly lose weight? I'm trying to exercise but most times I'm too tired. He says there is nothing to do about the Sarcoidosis. When I asked him if I should cut down on the vitamin D...he just said to definitely cut down on calcium since I have problems with kidney stones.
Thank you,Pam.

Sarcoidosis and Vitamin D
by: Anonymous

I think I "may" have sacoidosis too, is there a test for this, will it show up on a plain chest xray. I don't know if it has effected my vitamin D statis. My last two ANA tests have been at 1:160 and my Drs keep blowing this off as normal.I was at 1:80 several years ago. Recently I have developed a few spots and on examination my Dr told me that they were psoriasis spots.
I have looked up lupus and they found similar spots to mine on many of these sites. It could be early stages yet but my body is complaining about something.
I have been extremelly short of breath recently and my heart-rate has been fast and pounding to the point of feeling like passing out.
Dr said to reduce my thyroxine medication as my last test came back hyper.
I have no thyroid tissue left and I have been on the same dose of thyroxine for years.
Up to just over a year ago it was fairly stable.
I was involved in a high speed rear end car accident just over a year ago and my thryoid levels have been unstable since then. It went really hypo after the accident and since then it has been going up and down. I think the pituitary gland isn't happy but no Dr will listen too me.
I am hoping it will settle soon.
I haven't had a thyroid scan or a chest xray since the accident and my DR just keeps telling me it is all due to stress and won't follow up.

I saw a program on sarcoidosis recently on TV and I have wondered about it in the past it is only since these Lupus/ psoriasis like spots appeared that I began to wonder about a secondary cause.
I think they get worse when I spend time in the sun. My Vitamin D levels and PTH have been up and down over several years as well.
My body doesn't like cholecalciferol I can't eat when I take this hormone.
Interesting topic close to my heart.
Just hope I am getting closer to the cause of these metabolic upsets. I do have Grave's Disease it was treated with RAI over 20 years ago, I haven't felt well since.
I hit my head really hard and had concussion and whiplash injurys after the accident but at the time they only did a CT scan on my head, never checked my chest.

Sarcoidoisis is an autoimmune disease
by: Kerri Knox, Registered Nurse

What you are missing is that Sarcoidoisis is an autoimmune disease, as are many other conditions like lupus that you are comparing your symptoms to.

And autoimmune diseases all have the same underlying problem of Increased Intestinal Permeability. I've gone over this phenomenon a bunch of times on this site, most extensively on the heated discussion on the Eosiniphilic Esophagitis and Vitamin D thread.

Just replace eosinophilic esophagitis with sarcoidoisis or lupus and you'll understand better what I mean.

Kerri Knox, Registered Nurse

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