Dear Sjogren's friends,
I have a cardiologist appointment in May and I could really use your expertise in order to be somewhat prepared. This is completely foreign to me. I feel kind of blindsided. There is a lot going on and I will try to keep this simple.
A few months ago I began feeling even more exhausted than normally. How could that even be? Now I fall asleep while reading an email or sometimes when waiting at a red traffic light. I feel like fainting at times although I never actually have. And by chance I found my heart rate was between 50 and 57 during these events.
Then I began feeling pressure on my chest, and sometimes a kind of squeezing. When my doctor asked, I said I had no shortness of breath, but now I realize that isn't entirely true. For example when I move around the house quickly, I feel out of breath.
I've woken up a few times in the middle of the night, feeling a weight on my chest.
I've had two EKGs now. And a 24 hour Holter monitor was run this week. The EKGs appear normal.
Oh, and a home sleep study in February showed mild obstructive. I'm waiting for a hospital sleep study to be scheduled.
I have thyroid disease and my TSH has been all over the place in the last several months. My TSH is now 1.65. On the high end for me yet well within the normal range. I've always suspected my thyroid was responsible but this seems unlikely.
All other bloodwork is normal.
So now my questions. What do I need to do to prepare for my cardiology appointment? I want to make the most of my 30 minutes. What should I ask? If you've stuck it out to the end of my post, thank you. There's a lot to take in.
Give the cardiologist your history and the results of your tests.
That's enough.
Regards, Elaine
(This year is year 20 since I had three angioplasties with two stents placed in my heart in 1999. I saw my cardiologist very frequently in the beginning but only annually now.)
This is no doubt frightening and unsettling. In addition to Elaine's note look at meds to see if any could be causing this.
Have there been any other changes in your life or routine that could be leading to this?
I tell you my story. I always knew that I have bradicardia, so I very rarely go over 58- 60beats and if I am relaxed I have no more than 48 52 beats. they always said that that was good, that its better to have bradicardia than tachicardia. my heart exams have always been normal. once I said to my cardio that I wanted to have an holter just to make another exam. they laughed at me. I made a 72 hours holter and it turned out that during the night I lose some beats. this could be related to sleep apneas. anyway so now I make a 48 hours holter every 4 months,(could be twice a year but I am ipocondriac) because I have pauses of 2 seconds and more fractions of seconds. at 3 seconds you have to put a pacemaker. they always ask if I sometimes feel that I am fainting or if I have vertigo that I do not have but all this started from bradicardia and you spoke about 50 57 beats so may be you lose some beats, which was the holter result?
Thank you everyone for your replies. I'm surprisingly okay about this. My family doctor said she wasn't worried, so I'm not either.
Elaine, that makes sense. I don't know why I thought meeting with a cardiologist would be different from any other medical appointment. The name cardiologist just seems so very grown up.
SjoGirl, there isn't anything new or stressful going on in my life. Same old, same old really. This came on very slowly, like so many other symptoms have over the years. I can't associate its onset with anything in particular.
Bluegardenia, thank you for sharing your experience. I will not learn the Holter monitor results for three weeks. Sounds like a long time, doesn't it? But I'm sure it will fly by.
I would hope that the referring doc has filled the cardiologist in on your health history. The one thing I would want to ask the cardio is if these symptoms are related to the Sjogrens. We have had some people on this site who have had to have pacemakers and/or a defibrillator.
Sjogrens can cause some neuropathy of the nerves to the heart causing some weird symptoms. Irt is good that your doctor is taking this seriously and getting you to the right person. Take it easy as you wait for your appointment. Good luck and please keep us informed on how things are going. Irish
Carebear - sorry to hear you've been experiencing more than usual tiredness. One of the first things I have checked if I'm feeling more tired is my TSH, as I have under active thyroid. I've had times where the numbers are all over the place too, and never really found out why. They would adjust my meds up and down and then it would finally settle down.
Have you ever had a stress test? I found out at my test that at times I have a double beat, and occasionally a triple beat. I can feel the triple beats and it makes me cough - which to me, seems like it gets it back in regular beat rhythm.
I've set off alarms before when my heart beat got in the 40's when I was in out-patient at the hospital for observation in 2008. At that time, I was having pain in the middle of my chest, especially when taking a deep breath, which they ruled out as not a heart attack, but was diagnosed with chest wall inflammation. Was it caused by Sjogren's? I don't know, but I would suspect that it was a contributing factor. With Sjogren's we do tend to have lots of inflammation.
I hope you find some answers to what is going on with you.
Take care,
Bucky
Thank you, Irish. That's good advice.
I think it was you who said many years ago, "I don't worry until the doctors tell me to worry". Or something like that. Or maybe you didn't say, but it sounds like you, doesn't it? Good advice, that I follow regularly. Yes, my family doc is on the ball. Would the EKG note the neuropathy in the heart? I'm not clear on what it is measuring.
Oh, Bucky. I had no idea you went through all that. No, I haven't recently had a stress test.
Your description is exactly what I experience - the pain or pressure in the middle of my chest. It wakes me up a couple of times each night. And when my heart seems like it is skipping a beat, I cough too. Another very strange thing happened the other night. I got settled in bed, rolled over on my side, and my heart started pounding at double speed. It returned to normal about 30 seconds later.
Bucky, my TSH bounces around like that about every 5 or 6 years. Then it just settles down. Just like you. I have never gotten an explanation. Not even from an endocrinologist.
Well, you are all helping me a lot. And if I get to blame it on Sjogren's, I doubt any of us will be surprised.
Enjoy the upcoming week.
There are times when people experience palpitations that it has been known to help if one coughs a couple times. Apparantly the vagus nerve does something a little weird that causes the palpitations.
Mind you, this isn't medical advice, it is something that I have heard a couple of times. If you look up the vagal nerve you will see just how much it is involved in so many aspects of bodily function.
I would wonder that if Sjogrens affects the nerves that "run" the heart then possibly the vagus nerve could be involved also. Irish
Carebear,
Wishing you a good appointment with the cardiologist. I would think it would be a good idea to remind him of your autoimmune issues. My thyroid also fluctuates. Please keep us updated.
Anna
A change in your thyroid could certainly cause a change in your heartbeat. Just a thought. I don't know much about heart issues. That hasn't hit me just yet. I wish you luck with al of this Carebear!
I hope you get your sleep study soon - that can also affect the heart. It's always scary when it's the heart so I hope between the cardiologist and the sleep study you get some answers.
Some articles about Sjogren's and palpitations:
https://www.ncbi.nlm.nih.gov/pubmed/26171561
https://academic.oup.com/rheumatology/article/43/1/95/1778745
Sjogren's can affect any organ/system of the body.
Regards, Elaine