ramakentesh Posted February 22, 2012 Report Share Posted February 22, 2012 http://www.biomedsearch.com/nih/Angiotensin-II-upregulates-hypothalamic-AT1/19286949.html Quote Link to comment Share on other sites More sharing options...
jangle Posted February 22, 2012 Report Share Posted February 22, 2012 Ya I've also found studies that show angiotensin ii is related to anxiety symptoms. There was the study I posted earlier that aerobic exercise normalizes excessive angiotensin ii in the brain, I think I'm going that route before I try losartan. Quote Link to comment Share on other sites More sharing options...
issie Posted February 22, 2012 Report Share Posted February 22, 2012 Pitty we can't get docs to check this out for us. When so much points to problems with this. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted February 22, 2012 Author Report Share Posted February 22, 2012 I wish someone here would test positive to ang II elevations so we could all compare our symptoms. Quote Link to comment Share on other sites More sharing options...
julieph85 Posted February 22, 2012 Report Share Posted February 22, 2012 I really don't think anyone is going to show elevated serum ang 2. If we had it elevated we all would be showing some serious arteriosclerosis and low aldosterone. I think it is something elevated at the endothelium level only. Also, have you guys looked into CCK? I think you all should google somatostatin and then look up everything that it lists that the peptide inhibits. There is a reason that Octreotide helps so many hyper pots people. Often what helps a disease is what leads you to the cause. There are so many gut peptides that could be causing vaso dilation. I think there Is where we will find our answer. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted February 22, 2012 Report Share Posted February 22, 2012 Julie, I think that is a more likely issue. For me, I have that elevated VIP (vasoactive intestinal peptide). I don't think the doctor knows what to do with it. I asked my latest doctor and he said for it to be related to cancer, my level would have to be REALLY elevated, but mine is just like 2x normal. So, it's elevated but nobody knows why and what to do about it.And then, my PP (pancreatic polypeptide) was just under-range. I have no clue what that might mean.I guess my point is, I've had two endocrine "peptides" tested, and both were abnormal. Quote Link to comment Share on other sites More sharing options...
julieph85 Posted February 22, 2012 Report Share Posted February 22, 2012 Sue, has anyone offered you octreotide? I think it might be beneficial for you to try it. Quote Link to comment Share on other sites More sharing options...
issie Posted February 22, 2012 Report Share Posted February 22, 2012 Julie,Interesting find on the somatostatin. Years ago, I was found to be very low in growth hormone (despite me being a very tall gal - I'm 6'). My doctor tried his best to get approval for me to have injections of this (but since it is over $1,000 a month - 18 years ago - insurance wouldn't approve it). But, the taking of growth hormone has many bad side effects - one being possible diabetes. There were natural supplements that I took instead - at this minute, I don't remember what they were. But, that did help. Looking that up, as you suggested, it does appear that this might have some merit with some of us. Keep the research coming - everyone - pieces are fitting together.Issie Quote Link to comment Share on other sites More sharing options...
jangle Posted February 22, 2012 Report Share Posted February 22, 2012 Julie, I looked up somatostatin, and this I believe is a very interesting find.I tried looking up potential links between somatostatin and angiotensin ii, and so far the only relevant article I can find is this:http://www.ncbi.nlm.nih.gov/pubmed/6114434Which doesn't necessarily have a strong connection, but I believe the reason the aldosterone is blocked is because the somatostatin is acting as a AT1 angiotensin ii receptor blocker.I read another study about the G-protein coupling and I don't think somatostatin acts on the G-protein AT2 angiotensin ii receptors which led me to that conclusion.It is interesting and completely correct that we have to look at the therapies that work to understand the pathophysiology better. Indeed, octreotide is essentially artifical somatostatin.The thing about Somatostatin is that it seems to be linked to many neuroendocrine pathways, that's why I'm looking only at its effects on angiotensin ii because that's the highest probability of the disease pathway that I can see but there could be hidden effects that are also contributing or entirely causing POTS.It will be interesting to research. Quote Link to comment Share on other sites More sharing options...
julieph85 Posted February 22, 2012 Report Share Posted February 22, 2012 I would look into insulin and CCK. I also posted a while back about c-peptide. I got no responses so I left it alone. It iis the precursor to insulin and has been proven as a potential cause of autonomic neuropathy in diabetes which is very similar to pots. C peptide has direct effects on vascular resistance. I would look into all these peptides without the ang 2 first. There are a lot of interesting things you will find in regards to gut dilation Quote Link to comment Share on other sites More sharing options...
jangle Posted February 22, 2012 Report Share Posted February 22, 2012 I will try my best, but I have literally no experience with the neuroendocrine system. There's a lot of subtleties involved that I will have to learn but it is not outside the scope of what I can do I believe. It will be fun and I do believe from the start that POTS is a neuroendocrine problem. Now what specific hormones are involved and in what ways to be determined. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted February 22, 2012 Report Share Posted February 22, 2012 I have been looking at endocrine problems the whole 6 years I've had POTS. In the last couple of years, neuroendocrinology has been my focus.Julie, no, no one has offered ocreotide. Where does everyone find these doctors that offer these treatment??!! Mine never offer anything! Quote Link to comment Share on other sites More sharing options...
julieph85 Posted February 22, 2012 Report Share Posted February 22, 2012 It took me 3 pots specialists to even have the endocrine link mentioned. I think it's one of those things where if they have never tried it as a treatment they don't acknowledge it. If you ever want to make the trip to va dr. A is a supporter of octreotide and says it has changed many of his pots patients lives. Quote Link to comment Share on other sites More sharing options...
julieph85 Posted February 22, 2012 Report Share Posted February 22, 2012 Jangle, I think there are a lot of docs right now that think there is an autoimmune endocrine thing going on with us. When I saw dr. G in AZ I told him in my heart of hearts I believe there is an endocrine basis for this illness. He said he 100% agreed with me and wants to do research on it, however he has not found the correct "person". I think he even has specific peptides already in mind. Dr. Abdallah has already made a connection with Pots and insulin. Not too much, but a hypersensitivity to it. The Dirunal pattern alone suggests endocrine and the flares an remissions suggest autoimmune. Quote Link to comment Share on other sites More sharing options...
jangle Posted February 22, 2012 Report Share Posted February 22, 2012 Julie, Octeotride is a good medicine but also you might be interested in this: (also in my case I know I'd have difficulty getting octeotride.)http://content.onlin.../full/34/4/1170Granted the study population is different, but Dr. Stewart mentioned the similarity in sympathetic activation in POTS and maybe a lot of the same hormones are involved in sympathetic hyperactive disorders.Endurance training does seem to bring the hormones into balance. For them it was achieved with 40-70% oxygen uptake exercise. I believe it can work with us as well at around 60-70% oxygen exercise. I know for sure when I jog I can sit in a meeting longer without having the panic/anxiety responses and I'm feeling better now that I'm jogging for extended periods of time. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted February 22, 2012 Report Share Posted February 22, 2012 I may keep Dr. A in mind. The only thing about ocreotide with me, my bowels already are slow to move. I think ocreotide slows down the bowels. I don't know how I would manage that part of the med, but the other functioning part of it sounds good. Quote Link to comment Share on other sites More sharing options...
issie Posted February 22, 2012 Report Share Posted February 22, 2012 There are probably some natural type supplements that would do the same thing. I believe that some of the things I'm now doing - work on that. We will see - time will tell. I'm afraid of trying the ocreotide myself. But, will keep an open mind if what I'm doing starts to quit working. But, really not thinking, for me that vasoconstriction is what I need to do. At least not in the limbs. Keep us posted on how it affects you and what results you're getting with it.Issie Quote Link to comment Share on other sites More sharing options...
julieph85 Posted February 22, 2012 Report Share Posted February 22, 2012 Issie, yes I think that what some of us need the most is constriction in the gut, which is what octreotide does different then all the other constrictors. He wants me to do midodrine first because it does not require injections and octreotide is a mess with insurances but I'm scared of the SNS activation with midodrine and I'm scared of the gall bladder problems with octreotide. That's why I compromised to try the SSRI first. I wish there was some way we could raise somatostatin levels on our own. Quote Link to comment Share on other sites More sharing options...
issie Posted February 22, 2012 Report Share Posted February 22, 2012 Issie, yes I think that what some of us need the most is constriction in the gut, which is what octreotide does different then all the other constrictors. He wants me to do midodrine first because it does not require injections and octreotide is a mess with insurances but I'm scared of the SNS activation with midodrine and I'm scared of the gall bladder problems with octreotide. That's why I compromised to try the SSRI first. I wish there was some way we could raise somatostatin levels on our own.I hope your success is better than mine on that. Midodrine was a horror story for me. Take it very slow and stay home. I couldn't quit crying with it - real bad emotional turmoil with it. And it took awhile for those effects to wear off. It also vasoconstricted me way too much in the limbs and I don't think that was right for me. You won't know what it will do until you try it. Some do get good results. I wasn't one of those. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted February 22, 2012 Report Share Posted February 22, 2012 Issie, that sounds like the same reaction I had way back around 1990 when my local "progressive" gp told me to try Ginseng. I took one dose and literally cried for 3 days with such anxiety. And, I have never been a crier, so it was so not me. It was a really horrific reaction for one measly dose! Quote Link to comment Share on other sites More sharing options...
issie Posted February 22, 2012 Report Share Posted February 22, 2012 Yeah, it was two doses for me and the effects lasted for days. I know someone else on here, that had similiar issues. They didn't believe me when I told them that it was affecting me emotionally - and found out the hard way. Same effect for them. In some ways, it made me worse. I started having things with my POTS that I didn't have before. It took about 2 weeks before what it caused to totally go away. I thought I'd messed myself up even worse than I was. Glad it settled out for me though and my friend recovered from it too. But, like I said earlier - for some it works well. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted February 22, 2012 Author Report Share Posted February 22, 2012 POTS patients will sometimes have elevated plasma angiotensin II - 20-25% of patients are supposed to have elevated plasma levels - that is in the entire blood stream. The research indicates this. But many patients do not and ive yet to even speak to anyone who has tested positive.Its quite easy to test for really - just serum levels. if you test negative then your etiology doesnt involve angiotensin II which i guess is already clear as its autoimmune in your situation - and perhaps mine as well.remember that the studies on ang II seem to suggest that its a genetic defect in ace 2, not autoimmunity at this stage. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted February 22, 2012 Author Report Share Posted February 22, 2012 More patients pool in their stomach venous system than anywhere else in POTS. hand and feet poolers are a large minority so Octreotide has always made more sense - but the problems are that its short acting and the LAR version is VERY expensive so no insurance will cover it - otherwise most of us would probably be on it by now.Ive been wondering if there is an alternative splanchnic vasoconstrictor. Butcher broom does constrict via alpha 2 which are more prevalent in stomach veins. Quote Link to comment Share on other sites More sharing options...
julieph85 Posted February 24, 2012 Report Share Posted February 24, 2012 http://en.wikipedia.org/wiki/Tachykinin_receptor_1Substance P is involved in vascualar dialation, anxiety, smooth muscle contractions, bowel disorders, and rheumatoid arthritis. It is activated at the NK1 recepector by cytokines and interluekin-1- both involved in autoimmunity. Read it! Quote Link to comment Share on other sites More sharing options...
jangle Posted February 24, 2012 Report Share Posted February 24, 2012 The NK1 receptors and substance P are involved in every major region and hormone involved with POTS. Perhaps POTS patients have some type of altered NK1 receptor or perhaps an overexcretion of substance P?Somatostatin I recall works on G-coupled receptors which is what NK1 receptors are. Perhaps Somatostatin has competitive inhibition of these receptors (competing with substance P) which is providing the therapeutic effect. Quote Link to comment Share on other sites More sharing options...
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