Resting

Thank you all for your replies. Getting it all sorted out can sure be a long process. One step at a time and hopefully we'll all get there! Cindy

Did they check your adrenals? Some of what you're describing could be related to that. Hope you can get this figured out soon. Cindy

I try to make sure that I write down all the questions I want answered and take that with me to the appointment. That way I don't have to rely on my questionable memory! I'm so sorry that you're having such a hard time right now. I don't know enough about POTS to tell you what that diagnosis means, but I hope the very best for you in relation to having another baby. That desire would be a very difficult one to let go. Cindy

I have not been diagnosed with dysautonomia at this point, but know that something is going on. I recently saw a cardiologist because of low blood pressure. I also have a tendency to have my diastolic go slightly high (90-92) when I am at certain doctors' offices. He told me he believes that I have either an autoimmune or endocrine issue going on. I do have Hashimoto's thyroiditis and auto-immune oophoritis. I also have psoriasis and I believe Raynaud's. He suggested that I see either an endocrinologist or a rheumatologist. (I already see an endo who is treating my thyroid problem, but he is very unlikely to pursue anything else based on my past experience with him). I do have an appointment with a rheumatologist on the 25th and a different endo (to get a second opinion on a solid nodule on my thyroid) in early May. I wrote to the cardio to ask him about the possibility of dysautonomia. His response was that it was possible. But, he didn't offer to pursue that with me or make any other recommendations. Don't cardios diagnose that? Will a rheumatologist be able to explore that with me? Thank you for any advice! Cindy

I've also read that it can be a potential kidney problem (like doctorguest said). Not that I'm saying that's what is going on with you, but it probably bears looking into to be on the safe side. Best wishes to you! Cindy

Sorry to see this, Ernie. It is always frustrating to me when I post somewhere and don't get any responses. I hope that you have a great day. Cindy P.S. I haven't been on this site long, but from what I've seen I think you're a great encourager of the other folks here and I appreciate that.

Thank you for your replies everyone. I do have some feelings of lightheadedness (no spinning) and tiredness. I do have hormone imbalances, which I know can make you feel that way as well. It's just frustrating to see lots of doctors hoping for some help and not getting it. I have a lot of anxiety/panic, and it almost seems that my bp goes low when I get stressed out (except for at the doctor's office!). Also, my resting heart rate is usually between 70-80. It doesn't seem to take much to make it go up, and it is often in the 105-120 range. I assume that the Cardiologist didn't feel it was an actual heart issue since he didn't do anything about it. I am sending him a letter today asking about the possibility of some form of dysautonomia. Best wishes to you all and I hope you have a great day! Cindy

I have not been diagnosed with dysautonomia/POTS at this time. I do have auto-immune thyroiditis, auto-immune oophoritis (ovaries), and the cardiologist thinks I have some other auto-immune or endocrine problem. I went to the cardiologist a few weeks ago because of bp issues. I've always been 120/80 at the doctor's office (I'm very nervous at all appoinments). I did lose about 45 pounds in the past 1 1/2 years and my bp dropped a bit after that. When I started seeing an endo for my thyroid, my diastolic was always high (90-92) in his office. So, I decided that I would get a home machine and try to keep track of it. I was very surprised to see that it was almost always low at home (90-100/55-70). Part of the problem is that I feel like I don't really know what my "normal" is becasue I've never tracked it before. The cardiologist, who I had seen two years ago for a full workup (including a cath) didn't seem concerned about my bp. This morning my bp was 81/65, which is the lowest I've ever seen it. I'm getting worried about it. I'm afraid I'll just drop dead! Julie, I saw in your answer to another post that your bp goes low when you're seated. That's when mine does it as well. I thought that POTS/dys meant that it dropped when you are standing? I am going to see a rheumatologist (as a starting point) on April 25. How worried should I be about the bp? As an aside, I did have a bad case of the flu last week that still has me feeling a bit weak. Any advice would be greatly appreciated! Cindy

Mary, I don't know a lot about this, but I have read quite a bit on some heart forums. Ectopic beats and PVCs (premature ventricular contractions) and bigemeny are very common and are most likely nothing to worry about at all. My understanding is that sinus rhythm is a good thing. It doesn't look like there was anything sinister or worrisome on the report. My heart rate fluctuates like that as well. In my case it's mostly due to anxiety/panic issues. Hopefully you'll get more responses from folks who are more knowledgeable. Just wanted to say it doesn't look bad in case that makes you feel any better. Best wishes, Cindy

Maggie, I have a lot of the same symptoms as you related. I have not had a TTT done. I have auto-immune thyroid disease and the cardiologist and gyn both say they believe I have another endocrine/auto-immune issue going on which has not been diagnosed as yet. I am not an expert, but your morning cortisol looks too low to me. I know that it is in the normal range, but that doesn't mean it's not causing you symptoms, etc. I did saliva testing and my cortisol is right near the top of the range in the morning and then drops down under range for the noon and afternoon readings and low normal at midnight. So, I do have some adrenal issue. Getting that treated is not necessarily easy. I know that there is a very specific way that the ACTH stim test should be conducted and a base value that you should start with. If I was you I would research that more. All that being said, I really hope that you get this figured out soon and can get the appropriate treatment so you feel better. Cindy

Nina, I saw that there was a dr. listed in Jacksonville, which is about 3 hours from where I live. I'd definitely be willing to make the drive to see someone that was knowledgeable! It is frustrating to know that something is wrong with you but not be able to find a dr. who believes you or is willing to help. I may not have dysatonomia, but I think it is a distinct possibility and one worth checking into. I appreciate the info about wikipedia. It's hard when you have limited knowledge to wade through the stuff that's out there on the internet. I'm highly susceptible to thinking the worst which doesn't help! Thank you for taking the time to respond, Cindy

Thanks for your reply, Morgan. The gyn thinks that I have ovarian antibodies which caused the menstrual problems. I know that people with auto-immune diseases often have more than one and can also have dysautonomia. I have a book called Living Well With Auto-Immune Disease which is where I first read about it. I live in Central Florida by the way. The cardiologist didn't have anyone to recommend I see. He said he would discuss with my endo, but the endo is really not very helpful. He is willing to treat the thyroid disease and that seems to be it. He's very "old school" and kind of rigid about what he thinks and does. My GP is very sympathetic, but seems to do a lot of listening and not much acting. Ernie, I think that I will write him a letter and tell him that I would like to be evaluated for this and see what his response is. Thanks for that advice! Cindy

I am newly registered here and was looking for advice. I am a 44 yo female and was diagnosed with Hashimoto's thyroiditis in October 2007. I suspect that I have had a thyroid problem for some time. Had a premature baby in 2000 and two miscarriages after that. No menstrual cycle since the last miscarriage in Feb. 2002. I have tried for the past 6 years to get a diagnosis. I saw a new gyn on Monday and she said that she suspects an auto-immune ovarian problem in addition to the Hashimoto's. I saw a cardiologist yesterday and he said he believes that I have an undiagnosed auto-immune or endocrine problem. I can't seem to get a referral to have it checked into further. I went to the cardiologist because I have been having blood pressure problems. Initially I was concerned because my diastolic was 90-92 the three times I went to the endo. I got a home blood pressure machine so that I could keep track of it. I was very surprised to find that my bp was usually low at home, almost always under 100/65. I have always had bp of 120/80 at the drs office. I have been feeling lightheaded for the past several months. I did see an ENT who evaluated the lightheadedness. He didn't find a cause. Symptoms include: fatigue, muscle soreness with little or no exertion, bp low at rest (sometimes 88/60), diastolic bp high when stressed (90-92), lightheaded, toes turn blue/purple, feet and hands turn red, cold feet, hands and nose, hands hurt if I have to touch anything cold, skin flushing, if in a stressful situation I feel faint if I have to stand up for too long, heart rate fluctuates from low 60's to 120, and anxiety/panic. I have taken my bp when reclining and sitting and then repeated after standing and it goes up, not down. I haven't tried standing for a while and then taking it. I am on Synthroid now and was given low dose HRT to start taking. So, I do have some hormone imbalances which could be causing some of my problems. Anyhow, I am desperate to feel better and don't really know where to start or what kind of dr. to seek out. My husband read about dysautonomia on Wikipedia after I mentioned it to him. That article talks about sudden cardiac arrest. I am scared that I am going to suddenly drop dead now. Any advice appreciated. Cindy