Angiotensin II Type 1 Receptor Autoantibodies in Postural Tachycardia Syndrome, 2018, Yu et. al.

[bthompsonjr1993]

It was over two years ago when I first did this but I remember using a "Fedex Clinical Pack" which kept it cold and Dr. Heidecke (the head of Cell Trend) told me that even up to 72 hours was okay. I sent it with "Fedex International Overnight" knowing it was not possible to get from LA to Germany in 24 hours but I tracked the package and it arrived within 48 hours which was okay.



I would have to search for the e-mail and Ph#'s that I used in 2016 and am not able to do it right now. At that time, they got back to me fairly quickly but I was one of their first (US) customers and I think they are a lot busier now. I will try to do it over the weekend and send it to you by PM (and please remind me if I forget).



I vaguely remember e-mailing them the Fedex tracking # but it was two years ago. I'd have to go through all of my e-mails to try to find it (but am pretty sure I saved it).



Not that I can think of but maybe when I find the e-mails, it will trigger my memory!

Okay, thank you so much! Yeah I on their website it said i only needed to include an ice pack on hot summer days, which it was not when I sent it, and it arrived there in about 48 hours.

 

[Gingergrrl]

I really might try it now, given that I was positive for the a1 adrenergic antibodies as well.

@Ema Did you do the new testing for the angiotensin autoantibodies? Or are you trying Losartan without it?

 

[Gingergrrl]

Okay, thank you so much! Yeah I on their website it said i only needed to include an ice pack on hot summer days, which it was not when I sent it, and it arrived there in about 48 hours.

@bctjr1993 I was more organized that I'd thought and found the info from 2016! The general e-mail that I used was mail@celltrend.de and when I e-mailed with the head of Cell Trend it was heidecke@celltrend.de. I don't feel comfortable giving his ph# without permission but he gave it to me via e-mail and we scheduled a phone call to answer all of the questions that I had at that time. I remember distinctly that he told me that I did not need to include an ice pack or dry ice and just to use the Fedex Clinical Pack and get it there within 72 hours.

 

[Ema]

@Ema Did you do the new testing for the angiotensin autoantibodies? Or are you trying Losartan without it?

I’m thinking of trying it without it. It was over $100 for me to ship it and it just doesn’t seem worth it, even though I would like to know!

 

[Gingergrrl]

I’m thinking of trying it without it. It was over $100 for me to ship it and it just doesn’t seem worth it, even though I would like to know!

Definitely let me know what happens if you try it! In my case b/c I am doing so much better now, I do not want to do anything to rock the boat (unless I had solid evidence). If I was positive for the angiotensin autoantibody, and my doctor felt it was worth trying Losartan, I would try it. But if I was negative for the autoantibody, I would not mess with my current regime which is working. I e-mailed my doctor (re: another issue) so I asked him if he felt it was worth it for me to do the two new Cell Trend tests and am very curious what he says.

 

[bthompsonjr1993]

@bctjr1993 I was more organized that I'd thought and found the info from 2016! The general e-mail that I used was mail@celltrend.de and when I e-mailed with the head of Cell Trend it was heidecke@celltrend.de. I don't feel comfortable giving his ph# without permission but he gave it to me via e-mail and we scheduled a phone call to answer all of the questions that I had at that time. I remember distinctly that he told me that I did not need to include an ice pack or dry ice and just to use the Fedex Clinical Pack and get it there within 72 hours.

Oh wow! Thanks a ton! That is really helpful, I will try those email addresses.

 

[Ema]

You can test TGF-b in any normal lab. If elevated TGF-b is behind the autoimmune problem too, it might be a worthwhile proxy marker until the other testing is more widely available.

My TGF-b is always extremely elevated, which is why I got the losartan to try in the first place.

 

[Malea]

@Gingergrrl : Its just my assumption and not in any way scientific: But I would think that if taking calcium-channel blockers would worsen the situation that the receptors must be already blocked and not overly activated by the autoantibodies. (If they were activated there would be an improvement by a an antagonist.)

I think if I would really want to try Losartan my doctor would be open to it. Right now I‘m not 100% sure if taking it would be a good idea because I already have really low blood pressure. But I havn’t understood the mechanisms of how Losartan works yet. But hopefully will find the energy in the next weeks to read more about it.

Oh and I‘m curious what your doctor will think about the new autoantibody-testing and Losartan.


@Ema, thanks for the information about Losartan and tgf-b!!

 

[Gingergrrl]

You can test TGF-b in any normal lab. If elevated TGF-b is behind the autoimmune problem too, it might be a worthwhile proxy marker until the other testing is more widely available.

That is really interesting and I did not realize that TGF-b1 was sort of a proxy marker for the other testing. In 2015, right after learning I had almost 3 yrs of toxic black mold exposure in former rental, my TGF-b1 was around 9400 (and the top of the range is around 2300) so it was insanely high. My TGF-b1 was in the normal range the last time we checked it at around 2100 (sometime in 2017 but I do not remember exactly when).

My TGF-b is always extremely elevated, which is why I got the losartan to try in the first place.

So your doctor gave you Losartan specifically to try to lower TGF-b1, and not for POTS? Would this be considered off-label? (Pretty much everything I am doing is off-label and I have no issue with this, I am just trying to figure out what the on-label purposes for Losartan would be and am confused)! Would it just be to lower blood pressure?

@Gingergrrl: Its just my assumption and not in any way scientific: But I would think that if taking calcium-channel blockers would worsen the situation that the receptors must be already blocked and not overly activated by the autoantibodies. (If they were activated there would be an improvement by a an antagonist.)

You are totally correct @Malea and I don't know why I cannot retain some of this info re: autoantibody receptors. I continue to wish that I had a science background every day. You are right that the CA+ Channel autoantibody blocks the receptors b/c the doctors all told me not to take any meds, or have anesthesia, that further blocks the CA+ Channels.

I get so confused with the words "agonist and antagonist" re: receptors and also with which direction the CA+ ion is being blocked (into the cell or out of the cell?) even though this has literally been explained to me about a million times. And I feel even stupider b/c English is my first language vs. you are not even explaining this to me in your first language!

I think if I would really want to try Losartan my doctor would be open to it. Right now I‘m not 100% sure if taking it would be a good idea because I already have really low blood pressure. But I havn’t understood the mechanisms of how Losartan works yet. But hopefully will find the energy in the next weeks to read more about it.

I also have low blood pressure but I take low-dose Atenolol for POTS (since 2013) and assume that I always will. I really had not heard of people taking Losartan for POTS until this recent study and the new Cell Trend tests. If you learn more about the mechanism of how Losartan works, please let me know. I still have PM's turned off but I will send you one to open up a conversation and really appreciate all of your expertise on this.

Oh and I‘m curious what your doctor will think about the new autoantibody-testing and Losartan.

I haven't heard back from him yet on this but will let you know when I do.

 

[Ema]

That is really interesting and I did not realize that TGF-b1 was sort of a proxy marker for the other testing.

I don't know that I've ever read anyone else say that TGF-b is a proxy marker for anything else. It was more me wondering out loud if the Johns Hopkins article that I posted said that faulty TGF-b signaling was responsible for allergic responses, that maybe TGF-b *could potentially* be used as a proxy marker. Sorry if I wasn't very clear, it seems to be that kind of a week for me.

That finding, the team says, not only suggests heightened — rather than suppressed TGF-beta signaling — as the culprit behind immune cell dysregulation in patients with allergies, but also points to losartan as a promising treatment for allergies. The drug is an old, common medication already approved by the U.S. Food and Drug Administration to treat high blood pressure. The research team is currently investigating whether losartan could halt or reverse allergic symptoms in animals.

That's how losartan is working in this case, it is reducing the faulty TGF-b1 signaling which is responsible for the immune system dysregulation that leads to the production of autoantibodies. Shoemaker thinks that gliadin and anticardiolipin are the most commonly antibodies produced by faulty TFG-b1 signaling but thinks others could be implicated as well, which I also think is probably true.

So your doctor gave you Losartan specifically to try to lower TGF-b1, and not for POTS? Would this be considered off-label?

Yes, and yes. I don't really think losartan has much effect on blood pressure if it is already normal. It does lower blood pressure if it is high though.

 

[Gingergrrl]

I don't know that I've ever read anyone else say that TGF-b is a proxy marker for anything else. It was more me wondering out loud if the Johns Hopkins article that I posted said that faulty TGF-b signaling was responsible for allergic responses, that maybe TGF-b *could potentially* be used as a proxy marker. Sorry if I wasn't very clear, it seems to be that kind of a week for me.

Thanks for explaining and I wasn't sure if it was your theory (which makes sense) or if your doctor had mentioned this to you.

That's how losartan is working in this case, it is reducing the faulty TGF-b1 signaling which is responsible for the immune system dysregulation that leads to the production of autoantibodies. Shoemaker thinks that gliadin and anticardiolipin are the most commonly antibodies produced by faulty TFG-b1 signaling but thinks others could be implicated as well, which I also think is probably true.

Thanks and that is interesting.

Yes, and yes. I don't really think losartan has much effect on blood pressure if it is already normal. It does lower blood pressure if it is high though.

So you it take to lower TGF-b1 and potentially autoantibodies. I was still not sure if doctors are now prescribing it for POTS (regardless if the patient has low or high BP)?

@Malea I heard back from my doctor and he said that he is happy to order the new Cell Trend tests (if I decide to do them) or he's okay w/me trying Losartan even without the tests. My feeling is that if I am negative for the angiotensin autoantibody, that I do not want to rock the boat and just stay on Atenolol which works well for me. But if I am positive for the angiotensin Ab, then I would consider trialling Losartan. I need to discuss it w/him further in the future.