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Why I Refuse to Get My Blood Pressure Taken at the Doctor’s Office
The healthcare system failed me as my white coat hypertension turned into blood pressure phobia. Why we all need to understand what it takes to get an accurate blood pressure reading.
I never gave my blood pressure much thought. Although I never fixated on the exact numbers, I do know they were always below 120/80.
I had no problems throughout both of my pregnancies and I even experienced low blood pressure with my last child. It seems amazing to me now, but most of my adult life I could sit there cool as a cucumber when getting my blood pressure taken.
But this changed when the dental hygienist started taking my blood pressure, and I was going every 3 months for cleanings. For the first time in my life, I saw the top number get in the 120s and it left an impression.
This continued to happen at both the dentist (it inched up to 127) and doctor (130!!). I recalled that in 2017 blood pressure targets changed considering normal under 120/80. So, I started worrying about my blood pressure before appointments, wondering if it would go even higher.
I worried because blood pressure is an important risk factor for many diseases from heart failure to dementia. It goes up with age and by age 65, 75% of women have a blood pressure higher than 130/80.
The time that sealed my fate as a BP reactor
Eventually all this worry erupted because this time the dental hygienist took my blood pressure, my heart rate jumped up to 140. Surprisingly, my BP was only 125/70. She was noticeably alarmed, calling the dentist immediately.
“Did you just workout?” he asked. And I said, “no.”
“You should really get this checked out. Please see your doctor right away,” he said in a concerned voice. I don’t remember my exact response, but I let him know I’ve been having anxiety lately and we moved on.
Now my worry turned to dread even hearing the word blood pressure. But as a lifelong anxiety sufferer -with a tendency towards health anxiety–I know that exposure abolishes fear, and avoidance feeds it. So, the day before my next dental appointment, I went to the drug store to take my blood pressure.
I took it a few times and my heart rate instantly shot up. And for the first time, I saw the top number at 150 (my second number never went above 80).
What was happening?
That day at the dentist's my blood pressure registered at 150/70. I was very upset and immediately made a doctor's appt for the next day. I was so anxious at this doctor’s appointment that I had a mini panic attack while the nurse took my blood pressure!
Now the reading was a whopping 165/80 and my heart rate skyrocketed as well. I remember shaking as I slowly calmed down. After an EKG my doctor called “beautiful,” she settled in to lecture me.
“I think anxiety is causing my blood pressure to be high,” I said, on the verge of tears. “I believe it’s called white coat something.”
The doctor reminded me that I was also getting older. She wasted no time recommending a beta blocker saying it would help with blood pressure and decrease my heart rate. She also urged me to take medication for anxiety.
But I had only one question she couldn’t answer: Is this really white coat hypertension or is my blood pressure actually a problem?
So, I said “no thank you” to the medication and left the doctor’s determined to figure things out. First thing I did when I came home was order a home blood pressure monitor. And second, was to do research to find some answers.
White coat hypertension is very real and very common
In the early 80s, white coat hypertension became a term used to describe people who had high blood pressure in the doctor’s office, but normal BPs at home. This definition broadened to patients' already hypertensive, who could have systolic/diastolic pressures 10 to 20 points higher in the office. This has many names, such as white coat effect, white coat phenomenon and white coat response.
Up to 30% of people with elevated blood pressure at the doctor’s office have white coat hypertension. Additionally, the same amount have masked hypertension, meaning their levels are normal at the doctor, but high in the daytime and during sleep.
Let’s unpack this for a second. As many of 6 out 10–almost half–of people have office BP readings that are not reflective of their true blood pressure.
But what started as white coat for me, turned into a full-blown phobia. And sure enough, I found a paper that analyzed 125 people who posted comments about fear of blood pressure on forums. They found the intensity of the fear surrounding blood pressure was consistent with Specific Phobia:
Individuals in this study reported experiencing intense, anxiety-related symptoms when thinking about blood pressure, talking about blood pressure, seeing the blood pressure cuff, getting their blood pressure measured, or seeing someone else have their blood pressure measured. These symptoms are consistent with Specific Phobia according to the DSM 5 criteria
I encountered many stories online including a woman having difficulty passing her pilot physical due to a high "in office" BP. And the worst part is it causes doctor avoidance because the entire experience is so anxiety producing.
It’s important to remember that an accurate blood pressure is when your body is at rest. Blood pressure spikes all day for a variety of reasons (including healthy reasons like exercise). And being in “fight or flight” ramps up the sympathetic nervous system, therefore, increasing blood pressure.
The different ways to measure blood pressure
I was relieved to discover that office blood pressure is the least accurate way to measure blood pressure. Automated office blood pressure (AOBP) is now preferred due to consecutive readings and eliminating the white coat effect.
In a 2017 editorial in the Annals of Family Medicine entitled “It is Time to Change how We Measure Blood Pressure in the Office,” Dr. Lee A Green says:
Fortunately, over the last 15 years or so a significant body of evidence has emerged in primary care practices on automated office blood pressures collected with patients sitting undisturbed 6 times over 5 to 10 minutes (AOBP) or every 5 minutes for 30 minutes (OBP30). AOBP and OBP30 are superior to routine office blood pressure measurement and to SOBP (standard office blood pressure), closely approximating (for daytime pressures, at least) continuous ambulatory monitoring. Both methods could allow us to avoid overdiagnosis and overtreatment.
Taking your blood pressure at home is also more reliable than the standard office blood pressure. According to the 2019 American Heart Association (AHA) position stand, “Several studies have shown that BP on home blood pressure measurement (HBPM) maintains a stronger association with CVD risk than office BP. HBPM also can be used to identify patients with white-coat hypertension and masked hypertension, and it can be used more easily to monitor BP levels over time.”
Yet, the gold standard for diagnosing hypertension is the 24-hour ambulatory BP monitoring (ABPM). According to the 2018 US Preventive Task Force, “ABPM (24-hour, daytime, or nighttime) is a better predictor of long-term CV outcomes than OBPM (usually manual sphygmomanometry) and should be considered the reference standard for evaluating noninvasive BP measurements.” It is also recommended as the gold standard in the 2019 AHA position stand.
So, a doctor wanted to put me on medication after an office blood pressure reading, which is the least accurate? And no mention of 24-hour ABPM or the use of an automated blood pressure in the office. They didn’t even take my blood pressure right, which is yet another factor shown below. You should always have both feet on the floor, sit calmly for 5 minutes and back supported. I HAVE NEVER HAD MY BP TAKEN RIGHT!
Okay, so I was on the right track getting my home monitor. Now I just needed to find a way to get an accurate reading.
Taking my own BP
I got the wireless Qardio blood pressure monitor that comes with an app and immediately took a reading, but I had it on wrong. This was good because it helped me calm down. That first reading was 140/70. Okay, I can handle that. I figured I was nervous, and my heart rate jumped.
So, I tried again before bed and this time it was 150/70. I had a horrible night's sleep.
Qardio allows you to take three blood pressures, all one minute apart and then averages them. Perfect. I like this because the first one is probably the highest due to being nervous.
I also realized that it was the anticipation of seeing the number that gets me so riled up. So, I decided to not look at the number. This is not ideal for phobias. Usually, you must gradually expose yourself to lessen the fear. But this was another area blood pressure was unique in: I had to be calm to get a good reading.
So, I took my blood pressure at different times, didn’t look at the numbers, and started to feel more relaxed. I stored all my averaged readings in the app for when I was ready to view them.
I did this for about two weeks. And then I looked. I was ecstatic to see most of my numbers settled under 120/80!
I continued to get calls from my doctor. Having someone with a blood pressure over 140, put a warning light on her computer so she asked me to come in and get it checked. So back I went.
Back to the doctor armed with information
I really wanted to conquer my fear, so I came in and brought my home monitor.
At first, when the nurse manually took my blood pressure, it shot up to 150/70; she left me alone to relax. I started taking my blood pressure with my monitor. I got 150/70 at first, too, but I just kept taking it until it got down to the 120 range.
So, in came the nurse and when she took it, it immediately shot back up! She went to get the doctor, and I showed her the blood pressures on my home monitor, but she was not impressed. I explained to her what I now knew about blood pressure, asking if I should get a 24-hour ABPM because that’s the gold standard.
I did not impress her with my knowledge either.
“Even if your numbers are normal, this shows your blood pressure gets high when you get upset,” she says. “This could lead to a stroke or even death.”
Did she just say death?
Is that supposed to help me feel calm? No wonder most people with BP phobia never get better. And it often starts with a health professional reacting to a blood pressure number. Once again, I left feeling worse than when I came in.
I avoided the doctor for a while and eventually chose a different one and came for a physical. This is when I got diagnosed with anemia, which you can read about here. This experience was just as bad. She didn’t even know what 24-hour ambulatory monitoring was and didn’t care about my home numbers, either.
I left there so discouraged and have since learned that the US is behind in blood pressure management. In Canada they only use ABPM, taking multiple blood pressures in a quiet room. And in the UK, someone needs a 24-hour ABPM, to be diagnosed with hypertension.
But 83% of doctors in the US still believe in the accuracy of single office blood pressure measurement, even though it isn’t evidence based. Not only that, but only 20% take blood pressure properly.
Why isn’t there help for people with WCH and/or BP Phobia?
What also surprised me was I couldn’t find one program or help for people with blood pressure anxiety. There are no books. No online courses. NOTHING but very vague advice about relaxation techniques.
As I’ve mentioned, a typical treatment for a phobia is exposure to that phobia. It helps to teach the brain that the thing you fear is not so scary. But how often do you go to the doctors? Also, there’s so much weight put on that one number, making it virtually impossible to move past the fear. How was I to relax when there was pressure to keep my BP below 140 so the doctor didn’t have to look at a red light [annoying].
I read so many sad stories like the pregnant women whose blood pressure when high at every doctor visit. Each time they would send her to a high-risk unit where they do continuous monitoring, and her blood pressure would always go down to normal. Why did they put her through that? Couldn’t she take it at home BP instead of at the doctors?
I even reached out to the author of Stopping the Noise in Your Head, as I was still trying to conquer this phobia. He told me he didn’t see a problem not looking at the number if it meant I could get an accurate reading. And that’s when I accepted that I had found my solution.
The good news is this pushed me to concierge medicine, and I now love my doctor who accepts my home readings. And these days I say “no thank you” to measures of blood pressure that are simply inaccurate and tell the doctor nothing about my blood pressure. I gladly show them my home BP numbers, and if they object, they get handed the latest research to read that night to bed. This quote says it all!
Since Riva-Rocci and Korotkoff gave us the technique of conventional blood pressure (BP) measurement over a century ago, we have landed men on the moon, encircled Mars, invented the automobile and airplane, and, most importantly, revolutionized the technology of science with the microchip. Why, we might ask, has medicine ignored scientific evidence for so long so as to perpetuate a grossly inaccurate measurement technique in both clinical practice and hypertension research? — Eoin O'Brien, Hypertension, 2008
Change can start with us
What happened to me shouldn’t have happened. It shouldn’t be my job to educate health professionals about something (white coat) that has been around for over 40 years. Something, quite frankly, that is their job to control for.
Had the medical professionals taken blood my pressure in line with recommendations, I never would have developed this phobia. In my mind, white coat hypertension should not exist.
Health professionals also need to understand the emotional toll white coat and blood pressure phobia take on the individual. I used to hesitate when making appointments because of blood pressure. And those months of researching and being in the dark about what was wrong were horrible. A little compassion would be nice.
So that’s why I’m sharing this story with you. If you can still get your blood pressure taken with no problem and it’s in a healthy range, that’s great. But being at midlife, you may want to consider a home blood pressure monitor to get an idea of what it is in your “real life.”
If it starts inching up–and research shows that it does with age — you can ask for the right tests (24-hour ABPM) and not start on medication too soon. And if you already have elevated blood pressure, make sure you're getting accurate readings even at home. Try not looking at the number and getting as relaxed as possible.
In fact, I’ll be sharing what I’ve learned about keeping blood pressure healthy. I believe medication should be the last resort because there are so many cool strategies to help (hint: is has to do with that magic midlife molecule!)
But the best news is they will eventually replace the cuff with easier ways to monitor blood pressure, including a research validated bracelet sold in the UK and parts of Europe, a watch and a patch. I think these items are becoming more accurate and will become mainstream relatively soon. How amazing it will be to check our blood pressure on our smart watch, the same way we can check out heart rate.
We really do live in an amazing time. Technology is allowing us to monitor our health using evidence-based practices, even when healthcare doesn’t. Share your experience with blood pressure in the comments.
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