Possible Answer In Lab Results

[sue1234]

Well, if you read my thread from a couple of weeks ago, I had 20 tubes of labs done, and I'm still here! I really thought I would "feel" the missing blood, but I'm not tired or anything.

Anyway, of all the weird things run, I ended up having an elevated VIP, or vasoactive intestinal peptide. It is usually secreted from a neuroendocrine tumor. Mostly these various tumors are not cancerous, just wreak havoc on your body due to the hormone effect.

VIP usually gives lots of watery diarrhea, but I kind of have the opposite problem. However, when I used Milk of Magnesia, it doesn't just make me have a bm, it makes it watery. Have no clue if it makes others like that.

Reading up on VIPs on Wikipedia, it states it causes flushing due to peripheral dilation. I have been to many doctors stating that exact thing--"I am flushing and having vasodilation". I would tell them my hands would immediately swell and turn red due to the peripheral vasodilation. It causes dehydration due to diarrhea(usually), but I don't really have that huge issue. I'm just dehydrated due to not holding on to fluids. I am anxious to see how it might connect to POTS.

http://en.wikipedia.org/wiki/Vasoactive_intestinal_peptide

I can't find where I read it, I'll have to look around again, but it was REALLY interesting. It said that VIP, besides causing flushing and peripheral vasodilation, can cause splanchnic vasodilation. That's something we've talked alot about on here, about having possible splanchnic pooling.

My doctor said(I can't remember exactly, but it was...) I'm either the first patient he tested the VIP for or I'm the first patient that had a positive VIP. He's trying to get me set up for a PET scan.

I have been thinking neuroendocrine tumor all along, as I suspected insulinoma or pheo. I guess those two little growths on my adrenals could be contributing, but don't know. I didn't have anything regarding carcinoid come back positive, so not looking like carcinoid. He rattled off a few specialists around the country that would deal with this, and I already knew 75% of the experts' names as I've been researching neuroendocrine tumors and specialists for years! Thankfully there is one right in Houston, just a few hours away.

[songcanary]

This is interesting. I am so glad you have some results to pursue. Plus, having help relatively nearby to boot! What a relief this must be for you. Take special care.

[juliegee]

Wow, Sue-

So happy you are on the road to a DX and a little disgusted that you had to research and work so hard to get to this point That being said, I am so proud of you for being persistent and ultimately finding an answer. I am sending lots of prayers that it's nothing serious. PLEASE keep us posted on what you learn.

Hugs-

Julie

[janiedelite]

You must be relieved to finally have an idea of what's going on! Congrats! Are you going to try octreotide, if just for the splanchnic pooling?

BTW, my mom was mostly constipated prior to her first surgery for her primary carcinoid tumor, but still had the OI symptoms, flushing, and feeling like doom.

[HopeSprings]

Wow, this is along the lines of what you've been thinking all along. Were the results very elevated? Just read over 200 is highly suggestive of a tumor. Do you think this possibly could be your answer? Sounds like you finally found a smart Doc! I hope this is the start of an answer for you.

[sue1234]

Thanks for the well wishes. I will keep you all posted on this journey. Somehow, even though I have a concrete abnormal lab of something that actually matches my symptoms, I still feel like I am going to get to the specialist and get told I don't have anything! I've been through this soo many times, with other things that seem pertinent, but then nothing shows up or it gets dismissed. But, I don't think they can just ignore this lab.

Thankful, I'll try ocreotide if my new specialist offers it.

Naomi, my level was twice the upper limit(if I remember correctly, I'm not near my labs at the moment). So, for once, I wasn't just 1 or 2 points above.

What I'm disappointed in, is I thought he ordered the "iron panel"(I know I saw it written down!), and the lab only returned an iron level. I wanted to know the ferritin, etc.

[HopeSprings]

I know what you mean - there are often false leads that end up in dissapointment, but this really does sound promising. As promising as a tumor can be . And same here with the labs - they can't seem to get them right! I often find myself micromanaging Doctors and lab people to ensure the right tests are run and still they screw up! Just went through this with copper testing - so frustrating. Anyway keep us posted on your journey. I am so keeping my fingers crossed for you!

[sue1234]

Copper testing? I did that a few years before POTS for my fatigue. My urine was on the very low end, and plasma also. Doctor didn't know how to interpret it. It was like, are they low because the body is using it all and copper is everywhere it needs to be? Let me know what you find out.

[Dizzysillyak]

Hi sue,

Hopefully this will turn out to be good news for you. I know of several instances where

removing a tumor made a big difference in people's health.

I tried understanding this this morning, but my brain isn't co-operating ... Did wiki say this could

impact our bodies ability to use glycogen as energy ? So does this reflect on your hyperinsulinemia ?

I don't think my body is converting glucose properly since eating something with sugar + drinking

some caffee is all that keeps me going sometimes. My 2 hour seizure took the fun out of this trick

.. Lol

Please keep us up on your progress .. Oh and can you post what you were negative for sometime?

Tc .. D

[sue1234]

Dizzy, I also saw it has something to do with the glucose utilization and/or storage. I don't understand it, but will be questioning the heck out of the specialist I end up with!

I am not at home, so cannot post my labs right now. When I get home, I'll post what results I had.

[derekliz]

Glad to hear that you may have found something. Have you checked out this website. Great information and lists all recommended tests

http://m.arupconsult.com/Topic_VIPoma.html

Good luck to you!

Liz

[derekliz]

Just realized the first link i sent is the mobile link. Here is the full site link. http://www.arupconsult.com/Topics/VIPoma.html?r=n

[sue1234]

Thanks Liz. I look at that info and don't think I have a "true" VIPoma. If I remember correctly, the upper range number was 35 and I was at 72 or something. Also, I don't have the diarrhea. I looked at the other possibilites and the pheochromocytoma keeps jumping out at me. I've read a few medical studies that showed that a pheo can co-secrete VIP. That's more like what I think might be happening. Of course, I'm just guessing here.

And, of course, I would be 1 in 10,000,000!! How "zebra" can you get! But, I think POTS is a zebra also, in that they have not really found the root cause for alot of us.

[HopeSprings]

Yes, copper and ceruloplasmin were a little low. I wanted to re-test, but this time "serum free" copper - dumb lab did regular copper again (though I emphasized serum free and it was written this way on the prescription). I was thinking Wilson's because of the cognitive problems, but I saw an opthamologist who he didn't see the rings and the original copper wasn't WAY off, so I've dropped this idea for now.

[Katybug]

Sue,

So glad to hear that you have a lead. I know you have mentioned suspicions of this type of issue before. Let us know how things progress.

Katie

[ramakentesh]

Interesting result. There are a number of different vasoactive peptides that were being investigated in the forms of POTS that is specific to abnormal splanchnic nitric oxide-mediated vasodilation. That perhaps was one of them??

Octreotide is very expensive so you might struggle to get a doctor to prescribe it. If you can, you'd be better off trying the long acting variety to avoid crashes. Methylene blue can also potentially assist?

[janiedelite]

As far as the long-acting octreotide goes, it's usually best to try the short-acting subcutaeous version in case you have a negative reaction. Then you'll only have to suffer through for a few hours instead of a month.

[corina]

just what i wanted to say, there can be some pretty bad side effects from octreotide so i bet your doctor wouldn't want to take any riscs and start you off at the short acting ones. after a few days you could start the long acting injections. i can see what you mean by avoiding crashes ramakentesh and i'd like to add that for me the short acting shots worked better (sharper effect) and immediately where as the lar's took longer to fully kick in.

[ramakentesh]

Sorry i wasnt suggesting you start out with the long acting variety for obvious reasons, but some people I know using the medication find the long acting better as the former results in a post dose crash in their experience.

[RichGotsPots]

Hi Sue, what type of doctor tested you for VIP and do you know what the test is called? Problem with all these blood tests is the doctors never order a full screening and if they don't ask for something the labs don't look for it... I'm happy at least you know what is going on now. Also I'm curious, how do you know you had flushing? I have breathing problems and my chest gets red, does that mean I'm flushing. My face doesn't get that flushed though... But I over heat and dehydrate very easily.

Edited November 25, 2011 by thankful
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