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Vasoactive Intestinal Peptide(Vip)


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I posted a couple of years ago that my VIP levels were accidentally found to be elevated on routine investigational blood work. I can't remember offhand what the exact level was, but it was around 85, because I mentioned it was 2x the upper limit, and normal range is 20-42 pg/ml.

Last September I had my 3rd(and final) 72-hour fast to investigate my low blood sugar. It showed I definitively do not have an insulinoma. When I was admitted, the physician ran a lot of endocrine hormone levels, plus the usual stuff. My VIP levels had risen to 116 now, almost 3x the upper limit. I ended up with an immediate octreotide scan due to that, but no tumor showed up, so can pretty much say it is not from a tumor. It was a 2-day scan, and I hate lying on my back to begin with. So, between total food fasting for days and having to keep being brought to the scanner for scans, my body was not liking it!

The most interesting thing about VIP in relation to POTS is, it is a "potent vasodilator". I have been telling doctors for a few years that I have a vasodilation problem, which makes it harder to stand up and it causes me to be really hot when in normal, warm temps.

So, now I'm wondering if elevated VIP is a random thing for just me? Or, because it is so rare, is it that it has never been checked in many POTS people? (I say rare, because of all the neuroendocrine tumors, VIPoma is about 1 in 10,000,000, even more rare that an insulinoma person). I'll say again, I do not have the VIPoma tumor, as I was scanned thoroughly. So, what is causing me to have elevated levels?????

I found a cardiologist who does research on VIP levels and their effect on the heart. I just made an appt. with him for April, and hope he can shed light on this. I mean, if I have elevated levels of something that is known to cause vasodilation, then it sounds like maybe, just maybe, this could be a contributor to my POTS. If so, then I am on a mission to find out WHY my levels are elevated and what can be done to lower them!

BTW, I had to verbally "strong arm" the lady who makes appointments. She was like, you may have to see a regular cardio to get referred here. I said, NO, he is the one doing research on the hormone that I have an issue with. She said, oh, you must have dialed the wrong number because he's a cardiologist and doesn't work with hormones. **I was at this point rolling my eyes, but determined**. I said, his website said he does specific research on this hormone's affect on the heart. I rattled off the medical lingo of VIP and my high heart rate issues, and how he is the only one that can connect all this. I got an appointment.

Any one else EVER have their levels checked? Like I said, maybe it's just me having some weird thing going on.

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Wow, Sue! I've never even heard of this! I'm so glad you found a Cardio that's doing such specific r search in this area. Please keep us posted on what you find out and how it goes.

Also, if you don't mind, what test shows this elevation...a basic blood test for it or some special blood test during your 72 hour fasting test?

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Thanks, Katy. It is a regular blood test, VIP. As far as the doctor, I know! I was determined to see if there was a doctor in the South that is studying VIP, and sure enough, he's an electrophysiologist cardiologist. I figured he'd know in-depth how all the VIP can affect the heart action, and all the sequela(?) of vasodilation when standing. My fingers are crossed he can connect the dots!

The only reason I know about VIP is I am almost always seeing endocrinologists for the last 15 years. My endocrine system is wonky. One good endo, knowing my POTS co-morbidity, ran a few new, unusual tests and that's how we found it.

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Sue, that sounds really interesting! Like you I'm struggling with low bloodsugars but they can come borderline high as well. I may not have understood, but did the octreotide work for you as in vasoconstricting? It works wonders on me (though I needed to start a higher dose recently) but my neuro doc doesn't understand why it works so well. Could octreotide help you to "overcome" POTS?

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I know Paul Cheney MD has talked about VIP and it's relationship with ME/CFS patients. I'll try to find the link to the video in which he was discussing it.

Given how many ME/CFS patients have associated dysautonomia, this is very interesting.
Please keep us posted on what you find out.

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Corina, I had an octreotide scan. I haven't ever taken octreotide as a medicine for POTS. I'm hoping if the cardiologist can pinpoint this vasodilation issue, he may offer it to me to try...that is, if he can't find out why I have the high level. I'll just have to see.

Chaos, yes, please link what you've seen before regarding VIP. I'd love to know what's out there.

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http://mdwme.blogspot.com/2013/04/dr-paul-cheneys-latest-observations.html

http://cfspatientadvocate.blogspot.com/2013/04/lisa-petrisons-comments-and-notes-on-dr_23.html

http://www.cortjohnson.org/blog/2014/08/25/cheney-chronicles-protocol-chronic-fatigue-syndrome/

Hi Sue,

Here are some links to summary articles about VIP being used to treat symptoms of low cardiac output which Dr. Cheney believes is the cause of a lot of dysautonomia type symptoms. The first link has his actual videos if you want to watch them, or you can scroll down thru the notes to places where they mention VIP. It's in several different places.

Interesting that your levels are so high though as this sounds like he's using it as a treatment to improve symptoms in people.

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  • 5 months later...

Hi Sue

I am following in your footsteps.

VIP is at 160. No tumor (yet).

Suspected involvement in my POTS and mast cell.

The whys and hows still coming together.

I would love the opportunity to swap information.

Will PM you as well.

Thanks for posting.

Amy

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I just want to update that the cardiologist who researches in VIP was a bust. He did not have hardly anything to say about VIP, and offered me an antidepressant to "reset my nervous system". It was disappointing.

And, I'm excited to know someone else here has high VIP levels! I'm not alone! And, maybe a clue!

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  • 3 years later...

I just want to update this thread again. Here it is five years later and my VIP levels have gone up to an astounding level of 1600 (<75)!!!  I just had a very specialized scan to look for a Benedictine tumor (Gallium 65), and it was negative. So I have no clue why I have elevated levels. 

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Thanks for updating Sue, 

Do you think this may be connected to your dysautonomia? If the source could be found and resected it may result in a cure for you! Do you get a lot of diarrhoea?

Has Octreotide ever been suggested for you?

I hope you get some answers

B xxx

 

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🤗Hi Bombshell,  I don't know if it is connected, but would love to find the culprit for the elevation, remove it, and see what gets better!  I surprisingly do not have diarrhea, so very odd there.  I guess that's why they have not offered Octreotide.

 

 

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Octreotide has shown benefit for POTS/OI in a number of studies with no mention of VIP, so it might be worth looking into for you given that you do have elevated VIP. Do you have a decent specialist to discuss this with? Also whilst I am not advocating dishonesty, as a doctor myself (although no longer able to work), if a patient reports diarrhoea, you kind of have to believe them IYKWIM. Although that could open up another whole can of worms, colonoscopy etc.

B xxx

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