Prostaglandin Test Results

[jenwic]

I recently took several tests to see if I have MCAD. I called the dr. today to get the results and now that I have them, I am confused. My prostaglandin F2 was low- 123 (normal is 250-400). My 24 hour urine histamine was normal. My urine catecholamines were normal but the urine epinephrine was "undefined" The 5HIAA test was not performed because the ph level was less than the allowable range. The results for the tryptase are not back yet.

Can anyone shed some light on this for me? Thanks!!

[sue1234]

No, I don't have any answers, but was wondering--was the histamine test a 24-hour urine "histamine" or "methylhistamine"?

[jenwic]

It was histamine. I asked him about the methylhistamine and he said that hardly any labs do that one anymore. I don't know if the urine histamine would be able to diagnose MCAD or not. I hope so.

[sue1234]

The reason I ask is I had wanted to order the methylhistamine test myself, but it cost over $200. So, I thought I'll just have to wait until I can find a doctor that ordered it. But, if I can get the histamine urine test, maybe it is cheaper.

[kclynn]

I thought the urine tests for MCAD were supposed to be for 4 hours following an episode?

[jenwic]

I think I will ask him for that test next so I will have it on hand next time I have a flare up. When I did the 24 hour histamine I felt really good that day.

[HopeSprings]

--I was curious about your low prostaglandin and found this:

Function

There are currently ten known prostaglandin receptors on various cell types. Prostaglandins ligate a sub-family of cell surface seven-transmembrane receptors, G-protein-coupled receptors. These receptors are termed DP1-2, EP1-4, FP, IP1-2, and TP, corresponding to the receptor that ligates the corresponding prostaglandin (e.g., DP1-2 receptors bind to PGD2).

The diversity of receptors means that prostaglandins act on an array of cells and have a wide variety of effects such as:

cause constriction or dilation in vascular smooth muscle cells

cause aggregation or disaggregation of platelets

sensitize spinal neurons to pain

decrease intraocular pressure

regulate inflammatory mediation

regulate calcium movement

control hormone regulation

control cell growth

acts on thermoregulatory center of hypothalamus to produce fever

acts on mesangial cells in the glomerulus of the kidney to increase Glomerular filtration rate

Prostaglandins are potent but have a short half-life before being inactivated and excreted. Therefore, they send only paracrine (locally active) or autocrine (acting on the same cell from which it is synthesized) signals.

--I bolded the first line because it stuck out in relation to POTS. What did your Dr. say about the results?

Naomi

[jenwic]

I haven't seen Dr. Bernstein yet. I called his office to see if the results were back yet. I figured that I could just look the results up on the internet, but it is not so easy. Thank you for taking the time to look up that info! I wondered if someone could use up a lot of prostaglandins during a "flare" which would make them low afterwards. I have no idea!

[Victoria]

I asked him about the methylhistamine and he said that hardly any labs do that one anymore.

He's wrong. Medical practices send labs to Mayo Clinic on a daily basis:

http://www.mayomedicallaboratories.com/test-catalog/Overview/83011

[Sarah4444]

The Vanderbilt group diagnoses MCAD with a four hour urine collection after a bad flushing episode (8 out of 10), and they measure methylhistamine. See the Shibao (2005) article "Hyperadrenergic POTS in Mast Cell Activation Disorder".

[juliegee]

For what it's worth, Dr. Castells at Brigham & Women's checked my 24 hour urine for prostaglandin D-2. A high level would have been consistent with MCAD.

[jenwic]

I wondered if the fact that I use a steroid inhaler for my asthma might have influenced the prostaglandins.

[juliegee]

From what I understand NSAIDS and aspirin would mask a high level. Don't know about steroids.

Jen, just because your lab results are not indicative of MCAD doesn't mean you don't have it. Many of these laboratory tests are not 100% reliable, especially if done during a period where you were not symptomatic. What are your symptoms that make you think you do? What daily meds do you take? A careful history & your response to meds is just as important as your labs.

[Godsgal]

My prostaglandin d-2 is perfectly normal. But we now know that I do have a mast cell problem.

[HopeSprings]

Definition of Prostaglandin F2-alpha

Prostaglandin F2-alpha: One of the prostaglandins, a group of hormone-like substances that participate in a wide range of body functions such as the contraction and relaxation of smooth muscle, the dilation and constriction of blood vessels, control of blood pressure, and modulation of inflammation. Prostaglandin F2-alpha(PGF-2 alpha) is a stable prostaglandin that stimulates the contraction of uterine and bronchial smooth muscle and produces vasoconstriction (tightening) in some blood vessels.

Ok, so this is still on my mind. If the above is correct and this "hormone" is involved in these bodily functions ...and yours is low??? I'm sure it's not that simple, but I'd ask the Dr. about it. You never know when someone might just stumble across the answer. Please let us know what he says.

ps - I'm not relating this to Mast Cell stuff, just POTS

[jenwic]

Mack's Mom,

I have reactions to many things such as foods, medicines (I can hardly find an antibiotic that I can tolerate),hair color, shampoo, soaps, heat, stress, and many others. You may recall that I had horrible reactions when I didn't take my Florinef on time too. My reactions include tachycardia, sensation of throat swelling, shaking and tremors, hypertension, diahrea, nausea. I don't get all of these symptoms every time. Peanuts trigger all of the above but when I was tested for allergies to them it came back negative (level 0). When I took allergy shots I had huge wheal reactions to them even though the strength of them was 1/100,000 and the allergy dr. was stumped as to why. I even took Benadryl when I took the allergy shots and still had reactions. Now I am taking one Claritin per day which is helping some but I still have breakthroughs of flares. I also take Pulmicort and Rhinocort for allergies and asthma.

Naomi,

I will definitely ask the dr. about it. I have an appt. to see to Blair Grubb in 2 weeks for the first time. I am ready for some answers!

[juliegee]

Jen-

I can see why your doc was checking for MCAD! Out of curiosity, was it a mast cell doctor who did these tests? Forgive me, but I have one other question- just trying to understand. Were your allergy shots for peanuts even though the testing showed you weren't allergic to them OR was it for another known allergy. Your response to peanuts is certainly a hypersensitivity (if not a true allergy.) I have a similar experience. Pistachios give me a severe allergic response, but I am apparently NOT allergic to them per scratch & RAST testing. I avoid them like the plague, but peanuts are a lot tougher to avoid...

I have heard that Dr. Grubb's PA (Beverly) is quite familiar with MCAD. Makes me sure that he will be too. Don't know if he'll actually be able to run tests on you OR if he will recommend that you see a mast cell researcher if you haven't already.

All the Best-

Julie

[jenwic]

Julie,

The doctor I saw was Dr. Jonathan Bernstein in Cincinnati. I found his father, Leonard, listed on the tmsforacure website as a physician. Dr. Leonard Bernstein is retired. They are both immunologist allergists. I have only been to see Dr. Jonathan Bernstein one time. I hope he knows enough to diagnose me I guess I'll find out in a week. I know it is difficult to get a diagnosis of MCAD. The bad thing is, on the days I was tested I was not symptomatic. I don't know if the regular 24 hour urine histamine test can accurately diagnose mast cell problems or not. That's what I had done.

The allergy shots were not for peanuts. I wasn't even reacting to them then, that was several years ago. The shots were for grass and cats and dust (which I did test positive for an allergy to). Peanuts are indeed very hard to avoid. I have lots of well-meaning friends and family who don't understand why I am still avoiding them since I am not "allergic" to them. It's frustrating.

Because of Godsgal's recommendation, I think I will ask him to do a skin biopsy when I go back. I do have some small brown freckle/mole places. I have only had hives twice in my life so I don't know if anything will shoe up, but I feel like I need to get checked.

Thanks,

Jenny

[juliegee]

Jen-

Sounds like you are in good hands with both your allergist & Dr, Grubb. Some of the docs on the TMS website ONLY recognize mastocytosis & not MCAD. I pray that Dr. Bernstein will be helpful.

I totally get the peanut issue. So many restaurants only use peanut oil- so you can't even tell when you are exposed. that's awful, Many of your symptoms sound consistent with MCAD. At the very least, you should be on the med regimen to see if you can get consistent symptoms relief. Have you ever tried zantac or ranitidine?

Let us know how your appt's go. I have fingers and toes crossed that you will get a DX and effective treatment plan.

Hugs-

Julie

[ramakentesh]

Patients with many different autoimmune disorders find that they over react to a variety of external triggers but that doesnt automatically suggest a mast cell disorder.

[juliegee]

Interesting.

Forgive me for hijacking, Jen; but I have a question for Rama. Can autoimmune conditions be present even with a normal ANA? My rheumy's done oodles of testing (blood & urine) & she's found no laboratory proof of anything autoimmune. Could it still be present?

And bigger question, in a way isn't MCAD itself autoimmune? The immune system is overreacting to various stimuli and essentially attacking the body. If so, how could this NOT suggest a mast cell disorder? It is my understanding that mast cells ARE innate immune cells.

Thanks for your help in increasing my understanding.

[jenwic]

ramakentesh,

What autoimmune disorders could have similar symptoms as MCAD?

Julie,

I am praying that Dr. Bernstein can correctly diagnose me too!! I have been having symptoms (POTS and others) since 1993. More recently I have added the food/med sensitivities to the list. This all started with a misdiagnosed abcessed, gangreene appendix that I carried around for months. I was in and out of the hospital getting IV antibiotics and no one could figure out what was wrong with me. Finally, one night I started taking the Keflex antibiotic and cough med with codeine that I had been prescribed (for a bad cold) and my heart started racing like crazy. I ended up in the ER thinking it was an allergic reaction. They told me it couldn't be because tachycardia wouldn't be a symptom of an allergic reaction. They tried meds to slow my heart down but they didn't work. That was the beginning of my problems. Months later during a surgery to remove an ovarian cyst (they thought that was the cause of all my pain) they discovered my bad appendix!!

Hugs to all of you too for your help!

Jenny