TO: ShannieK, Re: The Information (MVP)

[Jimlow]

Shannon, I just got e-mailed by Ar, giving me okay to relate how she obtained info., at same time as I was finding info., about the Mitral Valve Prolapse subject, and niether of us knew the other was getting the information! I just wanted to make sure Ar was okay with my relating things about her, along with things about myself in regard to this form of dysautonomia, which may prompt you to also discuss it with your own Doc. I'm going ahead and sharing the info with you because I want to go through with my original plan and be off for a few days.
After I posted info on MVP yesterday, plus e-mailed even more to Ar, she came home that evening and found the info. The amazing thing was that she was on a trip and during it, got to meet with an Endocrinologist, a friend of her sister, who after hearing her story and about the orthostatic intolerance etc..., suggested she needs tested for MVP and spent a half hour with her about it. Just before this, her bro-in-law, a Cardiologist, also told her to get an ultrasound imaging done on her heart to check for MVP or any other possibles. Ar remembered after hearing this, that her mom had mitral. Anyway, we thought this looked like a confirmation. Ar is going to get the test done and I likely will soon too. If you have insurance Shannon, this 'might' be something you could discuss with your Doc, IF THE OTHER TESTS ARE NEGATIVE.
When I was late teens, an MD treating me for an injury, detected what he called a murmur, clicking type thing in my heart. This was the late 70s, much less was known about MVP then.(CONTINUED BELOW>>>)

[ShannieK]

Ar, that's great, that your test came back normal.  I'm really hoping we find what is wrong with all of us, but am really pleased also when things come back looking ok, cause some of these things could really turn out to be bad problems, so I'm hopeful we find our answers, but also some negative tests, have got to be a good sign.  I contacted my endo today to find out about my test result, it's almost been two weeks, never did get a call back, maybe tomorrow.  I'll keep you posted.  The OI is much better since dropping the propranolol, but still not all the way gone, probably will take awhile for it to get out of my system, but I did notice a huge difference in how I felt, as soon as I stopped it.  Keep in touch. Shannon

[ar1281a]

Hi there,

Yep, beta-blockers can cause OI. I wonder why you were kept on that med? I remember when I was dx with hyper I was put on beta-b for a short period but immediatelly stopped when the meds started to kick in. My CT scan came in normal, so that's good news. I guess it doesn't mean that they're producing enough cortisol though :-)

Well, good luck and keep us posted

[ShannieK]

Hi there, I have no doubt someone is looking out for us all.  That is amazing how all the info came about. Thanks for including me in your findings.  I will mention to my doc, what I have heard and see what she says.  An intresting input, remember how drmark mentioned that being on propranolol can cause some problems of OI, well I stopped taking it, and already today feel worlds better, I don't know if that was the problem, but can't help make the; connection, that without that propranolol, I feel so much better. I had always wondered about that, I was put on the beta blocker when I was having some extreme hyper symptoms, with chest pain and palps, and shortness of breath, but that that went away, but I was still on the propranolol, I sometimes wondered if I still needed it.  I do suffer from high blood pressure, but ya know, the whole time I've been on that med, it has never brought my blood pressure down, it has stayed high.  I feel so much better, I'm going to talk to my doc about this as well.  Jimlow the info on the PCOS, has shed some light also, and plan to meet with my gyno, to have some tests done.  STill have heard nothing on MRI and latest adrenal tests, as I mentioned to drmark, everything again, must look fine, cause she contacts me right away if there is a problem.  Thanks so much for all of your help both of you, and being there to support me during all this.  I will be in touch with anything that I find out.  Good luck to both of you on getting some answers of your own.  Shannon

[ar1281a]

Yep, thanks for sharing JimLow! this is s/t to look at I think. The endo told me that in some cases people w/some adrenal insuf may feel more of the MV symptoms and that some of my symptoms sound like that (tachycardia/palpitations when my thyroid is fine among other things). By correcting the other problem (adrenal one) the MV one should diminish. This endo told me that's not uncommon (espe. among women) and that many people have it w/o even noticing it. I remembered that my mom had it and it was not diagnosed until her mid/late fifities (it's thought to be hereditary). My brother-in-law (cardiologist) says that's very benign and not to worry at all, only extreme cases require medical intervention, but that's s/t we want to r/o anyway. The endo also told me that maybe in my specific case, maybe the use of prednisone worsened things and my adrenals are just trying to restart. To confirm she rec am/pm blood cortisol level checked. So, I'm calling my endo this week.

Shannon, what really impressed me is that I had this conversation with the endocrinologist last night, came back home and found Jimlow's info about the same thing. I don't think it's a coincidence and yes I believe God can be guiding us :-)

Anyway, we thought we'd share this info with you as we're together in the quest for an answer and for getting our lives back!

Also, in regards to your other posting related to stress. This endo confirmed what my endo says (and that jimlow has found in other sites) stress can be or is a major trigger of endocrine related problems. In the case of adrenal insuff, she told me that when we get stressed, our sdrenals adjust to this and produce more of the cortisol hormone. However, if they're not working properly then they can't properly respond to stressful situations and we may feel ill - so it just makes sense that stress in your life makes you feel bad. In my case severe stress makes my thyroid go out of range. And currently, I notice that mild stress makes me feel bad. But like you I feel extremelly weak and the pressure in my head when I stand and when I'm feeling worse -can you check your blood pressure + heart rate when you feel the head pressure? I know for a fact that my BP goes down.

I'm also calling this week to find out about my CT scan.

Take care and hope to hear from you soon!

[Jimlow]

He sent me to a Cardiologist who did stress test, EKG, Xrays and I had heart skips, palpitations while there. He diagnosed me with "Wolf-Parkinson-White Syndrome" but 20 years later, I went to a Cardiologist again (almost never went to Docs before thyroid disease) and he said they were mistaken because WPWS, is only corrected by surgery and I DO NOT HAVE IT. As years followed that first detection in my teens, I noticed I had the skips/flutters after too much caffiene, chocolate and even alcohol (drank a lot before Christianity). My "Multiple Chemical Sensitivities (MCS)", which is listed as a symptoms of mitral, worsened after onset of thyroid disease. Ar's symptoms listed for MVP also worsened after thyroid disease onset.
Being that we have prayed over this and asked for God's guidance, it's hard to believe our finding info at the same time was coincidence. I realize I'm now talking about a non-medical thing here now, so please no one get offended but it looked a lot like confirmation. The worst that can happen, is that it will be eliminated as a possible.
No matter how you slice it, the Orthostatic Intolerance is a form of dysautonimia, even the adrenals are controled by the involuntary N.S. but whether it is MVPS (Mitral Valve Prolapse Syndrome) worsened by thyroid disease, is yet to be confirmed. The "major symptoms" listed for it, are same as we have been experiencing. As far as there being "many" things under the dysautonomia unbrella, the "Dysautonomia Information Network", only lists four. As far as imagining we have many illnesses, there are a relatively small number of illnesses that fit these symptoms, one being adrenal insufficiency.
We'll talk more in a few days, everyone have a great coming week!!