07-18-20, 02:11 PM | ||
VF Supporter
Join Date: Dec 2006
Location: Texas
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Carol |
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07-18-20, 10:32 PM | |
Join Date: Apr 2013
Location: Arizona
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My story is pretty long, but I had a horrible time with doctors and my blood pressure. I have severe white coat syndrome, to where I have panic attacks when my bp is taken. The first time was June 2019, when I was getting my tooth pulled at the oral surgeon. So I made an appointment with a new GP. I was 59 last year, I'm 60 now. I'm not overweight and I exercise regularly.
On my first visit to that office, it was so high I was sent to the hospital ER. After blood tests and an EKG, everything was normal, except my high readings. I was put on high bp medication. Every month after that, the PA would increase it. My readings at home would always be lower than in the office. After three months, it was around 116/80. On one of my checkups, the staff was so alarmed they increased my anxiety tremendously. The office sent me to a cardiologist for an echocardiogram. But I knew it was low at home, however, the staff never seemed to listen to me. On my visit to get the results of the echocardiogram, I had a panic attack when they wanted to take my bp. My anxiety was through the roof by this point. When I saw the cardiac nurse, she told me not only was my heart healthy, I showed no signs of sustained high blood pressure. She asked me if I knew what my readings were before I was on medication. I said no, unfortunately I wasn't taking readings. They did not recommend increasing my medication, afraid it would go too low. She kept shaking her head, saying your heart shows no signs of sustained high blood pressure. I go back to my GP. Again, the staff raises my anxiety by being alarmed at my bp reading, which is lower than the previous visit, but higher than normal bp. They want to take it again. I get frustrated and tell the medical assistant that you can't do that! My bp goes higher and higher with the anxiety. They just wouldn't listen, it was so maddening. I said, my echocardiogram is normal. They actually said they didn't have it! I burst into tears at this point. Then I find out the doctor was reading it at that moment. So I actually see the doctor for the first time. She tries to talk me into increasing my medication. I flat out said no, my cardiolgost said not to do that. She backed down at that point, and said, well, why don't you try it and see how you feel? I could tell that in her mind my problem was not mental, it was physical. She and her staff would not accept that I had white coat syndrome, despite my test results. So I switched doctors. This time I was proactive. I went in with copies of my echocardiogram and blood tests, and said that I was definitely not increasing my medication. I could tell my new Internal Medicine GP didn't like it, but she accepted it. I had the test and my cardiologist's recommendations on my side. I still have white coat syndrome. Every time my bp is taken by any medical professional, it is high. I've just learned to have a copy of my echocardiogram with me and explain the situation. So far, they have all accepted it. I even had a biopsy on my thyroid, despite the high readings. Basically, it's a waste of time to take it. I keep telling my GP that, but they still are determined to take it. I guess they have to follow the rules. Of course, by this point, I've racked up thousands in medical debt because of my high deductible. And when you have multiple providers to pay, you can't just pay one amount, they each expect a high payment each month. We had to refinance our house to pay it off. And there was nothing wrong with me. I have done searches on white coat syndrome. One study showed that 50% of in office readings are incorrect. A good friend's GP has said he never prescribes medication on office readings, he has his patients take their bp for a month at home, then he averages the readings. That is what a good bp will do. I really want to wean myself off of my bp medication, to see what it my bp really is, but I'm afraid to do that. I kind of feel trapped. I doubt my doctor would be on board with it. As for what started the anxiety, two years ago I lost my chihuahua in a dog attack, and I believe I was suffering from PTSD. It became situational anxiety related to bp readings, which started becoming generalized anxiety because of my doctors not believing me. I've also read that being put on bp medication unnecessarily can cause anxiety and depression in patients over having bp, so it should not be over prescribed. I've had some counseling which has helped, and I have an excellent workbook on cognitive behavioral therapy, which has helped me a lot. Although, I still struggle with my bp readings in a doctor's office. My readings at home are still low. Sorry this was so long! I guess I'm basically just echoiing what everyone else is saying. Start taking it at home and keep records. Be proactive and be very firm. You can say no. You know your body, be confident in that. I've learned that most doctors operate by the statistics and the guidelines. I understand they have liability. However, I'm not a statistic, and I can't receive medical treatment based on that.
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Sherry |
07-18-20, 11:43 PM | |
Join Date: Jan 2006
Location: Orange County, CA
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Sherry, I had a very similar situation. I’ve had white coat syndrome my entire life (I think based on a childhood tonsillectomy which had bad complications and a very creepy surgeon) and have had so many doctors freak out when they see the high readings. I always explain the problem to the nurse, ask if I can skip the bp test, tell them that I get normal readings at home, I take in my list of recent readings, etc. but many doctors insist INSIST on checking the bp in the office at which point they freak out and start ordering ekgs and pulling out the prescription pads. I have a true phobia of doctors having been through so many similar doctors’ visits. I also was recently sent for an echocardiogram which was normal. I have encountered a few doctors who allow me to skip the bp test but many doctors really dig in their heels.As a result I tend to avoid doctors since it is so stressful. I really don’t understand why doctors take the pulse and bp at the beginning of the office visit when so many people are worried about, for instance, is the lump something scary or is the blood work going to show problems. I think if doctors would take the vitals at the end of the office visit the readings would be much more accurate for those of us whose cv systems are over-sensitive to the effects of adrenaline. Anyhow, I sympathize and I have met many people with white coat syndrome, so we are not alone 😀
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07-19-20, 12:37 AM | |
Join Date: Apr 2013
Location: Arizona
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Diane, thanks so much for posting. I’m sorry you experienced that. I had my tonsils out when I was six, but I don’t have bad memories of it.
It does help to know I’m not alone. It’s hard to find information on it, it’s as if they don’t want to admit it exists. I have found forums, where people have posted of similar experiences. And I can completely relate. I’m afraid to go to the doctor too. I read the post above about a DO and am considering switching. I have to add that during all of this, exercise was a lifesaver. It helped me cope with the anxiety.
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Sherry |
07-19-20, 02:04 AM | ||
VF Supporter
Join Date: Feb 2013
Location: Illinois
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My mom did end up on a small dose of a blood pressure medication in the end (not a statin) but she might have been able to avoid even this if she had been willing to make more changes to her diet, activity level, etc. In any case, I just wanted to say that there are doctors out there (like my mom's) that don't jump right into prescribing stuff right off the bat. |
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07-19-20, 04:07 AM | |
Exchange Moderator
Join Date: Feb 2002
Location: PalmTreeVille
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after 3 years of denying that i should use a low-dose statin for my high cholesterol, i decided to take it, with the personal pledge that i would not increase it. i tried doing lifestyle changes, including joining the Dean Ornish program. family history, age and post-menopause were big contributors to the reasons why i probably was unable to do it w/o meds. so far, so good, with low dose statin.
oddly enough, i was worried about my blood pressure which tracks in the 140/90 range, ONLY when it's read somewhere OTHER THAN my PCP (like donating blood, dentist, etc). however, whenever i was in my PCP's office, my BP was excellent. i just made sure a manual device was used to measure my BP. those auto-inflating ones tend to jack mine up. PCP felt my BP was fine and did not need meds. whew. i'm able to get my BP down by alternate nostril breathing! - this is a yoga/meditation move, believe it or not. after all of what I said above, i agree with others that you should get a second opinion and go to someone you like.
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~jeannine Miyagi: Wax on, right hand. Wax off, left hand. Wax on, wax off. Breathe in through nose, out the mouth. Wax on, wax off. Don't forget to breathe, very important. [walks away, still making circular motions with hands] ~ Pat Morita, The Karate Kid, 1984 disclosure: in the years 2002-2004 i had a professional relationship with a distributor of fitness videos; see profile. |
07-19-20, 07:34 AM | ||
Join Date: Jan 2006
Location: Orange County, CA
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07-19-20, 08:59 AM | ||
Join Date: Apr 2013
Location: Arizona
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Sherry |
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Tags |
blood pressure, cholesterol, doctors, oatmeal |
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