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Maiysa

Has Anyone Had An Elevated Prostagladin Level?

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Whoops...spelled prostaglandin wrong. I'm not sure if anyone gets this test, I had never had it before. Mine was the 24 hour urine prostaglandin f2 and the high for the reference range was 1,000. Mine was 1240. Has anyone had this or knows what it means? The nurse called today and just said to take more histamines and they will recheck it in 2 months. I'm already on histamines. So am confused, but will continue to do so anyhow. I was not given a diagnosis or told what it means. I also had an elevated compliment test CH50. Doc said I have a lot of inflammation. Anyhow, just seeing if anyone else has had this test come back abnormal.

Thanks!

Maiysa

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My son's prostaglandin D2 was 2.5 times too high. That and his heparin being too high was the evidence that he has MCAS. Dr Afrin is having my son take aspirin, it suppresses PGD2. Mast cells create PGD2.

From what I've read, PGD2 is mainly found in the brain, spinal chord, intestines and stomach. I'm guessing this is why most of my son's issues have been GI related. It also has some effect on sleep. It has lowers body temp, I'm not sure how or why, but my son's temp has gone down to 94 degrees a couple of times.

Christy

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I dont assume that elevated Prost levels are connected with certain theoretical ideas. Vanderbilt tried to reduce this hormone with anti-inflammatory medication and it reduced the tachycardia but worsened symptoms. Food for thought.

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Thank you for you post Christy,

But sorry to hear about your son having these issues. Poor guy and poor mom. Not easy to deal with I know. But so glad you are able to see Dr. Afrin. That's really great to hear. He sounds amazing.

I am pretty sure the test they did on me was the PGF2.?? Prostaglandin F2. I think that's it, I'm going to have to look again. But I can't take asprin anyhow. It really did a number on my autonomic system. Just a tiny baby asprin really messed me up. I'm not sure why the doctor didn't test the PGD2. I went to an immunologist who has worked with Dr. Akin, who I believe deals with mastocytosis. But I could be wrong. Did your son also have elevated tryptase levels? I'm waiting on the b-tryptase which takes 35 days to complete. I already did the regular tryptase and it was elevated.

Thanks again and I hope you have a healthy evening,

Maiysa

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His tryptase test was fine. They are starting my son on aspirin first, since it is the cheapest. Dr Afrin said there are many things to try through trial and error, just like POTS, to help the MCAS. So far not much has helped the POTS, so hopefully treating the MCAS will also help the POTS.

I don't know anything about PGF2, I've only researched the PGD2. Hope you get answers you need.

Christy

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Christy, I hope the asprin helps. Let us know how it works.

I just read that the test I did, beta PGF2 is a metabolite of PGD2. I guess they are both helpful in diagnosing a few things, and mast cell is one of them.

Thank you,

Maiysa

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I was reading on another site about mast cells and the use of aspirin. I guess aspirin will degranulate the mast cells at a slow level. The idea is to have a slow release instead of an instant over release that causes the terrible symptoms that happens with that. If you don't have your H1 and H2's working well enough for you ---aspirin will be a terrible thing. Because you will have a mast cell degranulation release. It sort of sounds like how taking allergy shots - a slow release of what the problem is. That's not exactly how it is working - but, sort of gives you the idea.

Issie

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I just read the same thing in a medical journal Issie about asprin causing degranulation of PGD2 making asthma worse. Not sure what it means in the scheme of things.

Maiysa

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From what I gather the unpublished work on Prostglandins did not suggest it was a sign of mastcell disorders in these patients. Might be, but it wasnt really clarified and other signs of inflammation are associated with some POTSies.

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I just read the same thing in a medical journal Issie about asprin causing degranulation of PGD2 making asthma worse. Not sure what it means in the scheme of things.

Maiysa

Well, for you and me ---it means we won't do well with aspirin until we figure out which H2 is going to agree with us the best. :) Cause, neither one of us have our histamine blockers right at this moment and aspirin will probably make us worse.

Issie

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