Anyone else have leaky vessels, can’t hold onto fluid?

[ShupeJL10]

For some reason I can’t hold onto the fluids I drink and need iv fluids at home. But even those don’t do the job. I was doing some research on here and am about to try a desmopressin + fludrocortisone combo to see if that will help. Does anyone else on here feel like their vessels are leaking or have been diagnosed? And if so what are the treatments? I saw a few years ago octreotide really helped someone with low volume and leaky vessels 

[RecipeForDisaster]

I need IV fluids, too. I use DDAVP which helps somewhat, but I have to be careful of low sodium levels. I eat 15+ grams of salt a day(along with 4L fluid orally), but still run low. I didn’t tolerate fludrocortisone due to migraines, edema, and not a whole lot of benefit, but that’s unusual. I’m on a slew of other meds, too. I use IV fluids when things are really bad - because I can’t have a PICC or port.

[MikeO]

I would like to know how one would know if they have leaky vessels. Is there a test for this?

[ShupeJL10]

@RecipeForDisasteroh I gotcha! Yeah I do iv fluids every day with my picc and I was found to be low on both red cells and plasma, we are still trying to figure out why, but even the IVs aren’t enough. I’m gonna be on a fludro+desmo combo hoping that helps 

[ShupeJL10]

@MikeOim

not totally sure! My doctor just thinks I have it but I have no idea how to test for it 

[RecipeForDisaster]

1 hour ago, ShupeJL10 said:

@RecipeForDisasteroh I gotcha! Yeah I do iv fluids every day with my picc and I was found to be low on both red cells and plasma, we are still trying to figure out why, but even the IVs aren’t enough. I’m gonna be on a fludro+desmo combo hoping that helps 

Did you have a blood volume test? I know I’d feel better with daily fluids, but I have to watch it, so I have some veins left to use for fluids, iron, and IVIG. I don’t think mine leak, but while I’ve cleared a nephrology workup, I just seem to discard anything I drink, no matter how salty.

[ShupeJL10]

@RecipeForDisasteryesh I did have the blood volume test. It’s so weird I’m low equally on red cells and plasma almost and iv fluids don’t bring up the plasma volume for too long. That’s why I’m adding the desmo and fludro. They want to put me on epogen too. I’m trying to find the root cause to this cause it came out of nowhere during Covid, and I tested positive for mold toxins too. How was Ivig for you? Didn’t help me at all. Does iv iron help? My ferritin is quite low 

[Garden Gal]

yep on the leaky vessles, and desmopresin has been really helpful for me. I hope it is for you too. Was a bit of a rocky start but now I'm at a dose that seems to work for me. For me the twice a day dosing didn't work. I ended up with a smaller dose three times a day and an OK with my endocrineologist to take an extra dose on the days I'm peeing waaay to much. I also have a standing order for sodium at the lab so if I feel like my sodium is going too low I can get it checked even if it's the weekend and my doc is not in the office. I haven't needed to re check much now that I have my dosing figured out though. I hope it helps a lot for you.

I also have a lot of food sensitivities, and for me I've noticed that when I eat stuff I'm sensitive too I seem to pee out a toooon. Maybe it's my body trying to get rid of it? Or extra leaky blood vessles due to increased inflammation? I'm not sure, and not sure if my doctors understand or believe me that this happens... but if I drink milk or eat certain kinds of cheezes. Bingo I'm puny, with an elevated heart rate and peeing like CRRRRAZY and so thirsty.

Hope you figure out something that works. For me figuring out the food sensitivities and starting desmopresin has been life-changingly positive - a huge move towards stability. May you find what works for you!! I'm sorry for the hard journey.

[RecipeForDisaster]

IV iron helped my ferritin levels and anemia, but not really how I was doing. IVIG helps my neuropathy, but hasn’t helped the low BP/autonomic dysfunction and stuff. It’s only been 6 months and I’m supposed to give it 1-2 years.

 

IV fluids seem to help me for a time period about equal to how long I run them - I do 2L a day, and if I stay connected for 36 hours, I am better for another 36 hours after that. It’s worth it, but not great.

 

I really want to find my root cause, too. And I’d love to get my blood volume tested.

 

I can feel my sodium dipping. It’s not a good feeling. I know I have to back off on DDAVP in that case, but I also get daily migraines if I take it daily. I pee far too often, unless I am getting fluids IV vs. drinking them, and then I don’t!

[Sarah Tee]

There's no way of testing for it, but that's what my specialist and I suspect.

The reason for this is that IV saline doesn't do anything for me, but IV albumin helps. Albumin maintains what's called "oncotic pressure" in the blood. It basically holds fluid in the blood stream, and can even draw in some fluid from the interstitial spaces.

My suspicion for the cause of my leaky vessels is a combination of chronic inflammation and a sub-clinical connective tissue disorder.

My clue to the inflammation playing a role is that prednisolone makes me feel normal, presumably by the mechanism of reducing capillary leakage by reducing inflammation (which it is known to do).

My clue to a sub-clinical connective tissue disorder playing a role are a few signs that indicate a collagen disorder, such as needing extra dental anesthetic, having skin that marks easily, and having the muscles in my bowel wall lose tone in a rare bowel surgery complication. (And having orthostatic intolerance, to state the obvious.)

 

***

If the desmopressin and fludrocortisone don't work, maybe you could ask your specialist about IV albumin. Unfortunately there's not much published on it, but it is used occasionally for refractory POTS and other OI.

We are hoping that Dysautonomia International is going to invite Dr Zaeem Siddiqi to give a talk on this topic. He is one of the few to publish anything on IV albumin, although other specialists do order it. Dr Siddiqi was supposed to be leading a study on its use but it was withdrawn for reasons I haven't been able to find out, so all that's out there is this poster presentation from a neurology conference:

https://www.cambridge.org/core/journals/canadian-journal-of-neurological-sciences/article/p040-efficacy-and-safety-of-periodic-albumin-infusions-in-refractory-postural-orthostatic-tachycardia-syndrome-a-comparative-study/60BFDDF0558BE61F70799DEE202A0AE9

And this newspaper article about one of his patients:

https://www.cbc.ca/news/canada/saskatchewan/katherine-kay-diagnosis-genetic-testing-1.4260019

 

***

Octreotide works for OI by reducing blood flow to the abdomen/gut. It blocks a chemical called GIP, which is released naturally when you eat as a signal for blood vessels in that area to dilate and have plenty of blood ready to slurp up the nutrients from your meal. But in people with POTS, it appears to be released in greater amounts than normal, according to a recent small study by Vanderbilt University researchers.

Original small study (edit to link to full text):

https://www.ahajournals.org/doi/10.1161/HYPERTENSIONAHA.121.17852

Upcoming big study:

https://clinicaltrials.gov/ct2/show/NCT05375968

(Note that they are only looking at patients with POTS. The same effect may happen in other types of OI with worsening postprandial symptoms.)

The downside of octreotide is that it doesn't just block GIP, it also interferes with other chemicals that are doing their normal job at normal levels. This can lead to side effects and gall bladder damage.

The good news is that there is a chemical produced naturally in the body that specifically blocks GIP, and this chemical has been synthesised and used in studies on humans. The bad news is that it is not available as a medication and the studies were basic science investigating the human digestive system. Also, in these studies, the anti-GIP chemical* was given intravenously. To be practical for everyday use, it would need to be able to be injected subcutaneously or taken orally.

So if GIP turns out to be the culprit, and if the GIP antagonist is shown to be safe and effective for OI, and if it can be brought to market as a medication for self-administration, then it would be a good way to prevent excessive amounts of blood rushing to the abdomen after meals.

(I haven't heard anything about octreotide working for leaky vessels, but I'm not a doctor or researcher so I could have missed that aspect.)

*The GIP antagonist chemical doesn't even have a name yet, just a long chemical formula. It is mentioned in the first Vanderbilt study I linked to at the end of the "Discussion" section.

[Pistol]

@Sarah Tee thank you so much for sharing this information with us! No doubt this took a long time to research, so it is wonderful that you can share it! Very interesting indeed!

[ShupeJL10]

@Sarah Teewow amazing info!! You’re so informed haha. And my doctor is trying to get albumin approved for me but it’s quite hard to do. I had an infusion of it once with blood as well but the effects only lasted a day or two sadly. Do you mind if I send you a message?

[ShupeJL10]

@Garden Galim so glad you found a dose that works for you! I wonder why twice a day didn’t work. I’m starting off low at 0.1mg with 0.1 of fludro as well. I’m also worried about how it will interact with iv fluids but we’ll see!

[ShupeJL10]

@RecipeForDisasterhow close together do you do your iv fluids to your DDAVP?

[Sarah Tee]

@Pistol, post-prandial effects were where all my troubles started 18 years ago, so I have read obsessively on this topic since being diagnosed. I do hope the Vanderbilt research leads somewhere. I can see it taking a while, but hopefully we'll all be around to benefit from it if it does come to fruition in, say, five years. Fingers crossed!

I wish I had a better background in biology. I haven't done any since middle school, unfortunately. I did edit student materials in science and health in a university internal publishing department for a few years. Before I became unwell I was planning to get a basic science degree so I could qualify as a science editor rather than a "plain old editor". (In the States I would be called a copy editor.)

[RecipeForDisaster]

17 hours ago, ShupeJL10 said:

@RecipeForDisasterhow close together do you do your iv fluids to your DDAVP?

I’ve messed around with taking DDAVP the same day as fluids, before, after… I have to be a little careful because DDAVP and 2L fluids on the same day makes me swell up and get migraines. I hoped that would be the ticket - combining them.

[Sarah Tee]

Just wanted to clarify:

In my earlier comment I said that there's no way to test for leaky vessels - I should have said that there's no test generally available. There is research into how fluid moves in and out of the bloodstream, done with nuclear markers. So it has been measured and studied quite a lot in human and animal subjects in research labs. But it's not something your doctor can order a test for, unless you are being seen somewhere very high-tech, like maybe the NIH Undiagnosed Diseases Program.

The search terms "capillary permeability" and "vascular permeability" bring up some useful info. There doesn't seem to be any dysautonomia-specific research.

In my case, "leaky vessels" is an assumption based on the fact that IV saline doesn't improve my symptoms and IV albumin does. A plausible explanation is that the saline is leaking straight out again, but the albumin is holding in place and (temporarily) boosting my blood volume up to normal.

[ShupeJL10]

@Sarah Teehow often are you allowed to do the iv albumin?

[Sarah Tee]

@ShupeJL10, my specialist tried me on it once a week. For me, this wasn't enough, unfortunately. By about the fourth day, the positive effect had worn off. I would need to have it twice a week.

But everyone is different, and, from what I can gather, people can have good results having it once a week. Again, because everyone is different, there could be people who get good results from fortnightly or even longer intervals.

There is almost nothing published on this topic, so a specialist would probably try weekly infusions and see how it goes.

There was supposed to be a large study done in Canada. That study was going to look at a weekly infusion of 5% albumin at a dose of 1g/kg of body weight, so that would seem to be a sensible starting point (of course taking into account the patient's medical history).

https://clinicaltrials.gov/ct2/show/NCT03365414

Unfortunately the study doesn't appear to be going ahead. The lead on the study, Dr Zaeem Siddiqi, regularly uses albumin infusions on a small group of POTS patients who haven't responded to other treatments.