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Gusto1963

First post: How do you get GP to listen?

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Hi everyone,

I’ve been reading over the forum for a few weeks, and wanted to get your input on something. I apologize for the long post, but I wanted you to have some background info.


General health

  • 55 year old caucasian male. 6’ 1” and 167 lbs. 
  • About 10 years ago I lost about 50 pounds, and I’ve managed to keep it off. I do have some weight around my mid-section, that no amount of exercise or diet seems to make go away.
  • 2001: CSR (Central Serous Retinopathy). Often called the “Air Traffic Controllers Disease”. The general consensus is that this is stress related. I had a LOT of stress during this time.
  • 2015: In situ melanoma removed.
  • 2018: Large lipoma removed from back.
  • 2018: Dry AMD diagnosed.
  • Labs: All results within range (at least for those tested) except for vitamin D (72 nmol/l or 28.8 ng/ml). Lipids a bit high in the “borderline” zone.
  • Resting BP: Morning: 123/71 P: 71. Afternoon: 133/81 P: 87
  • Resting HR (according to 2 weeks of FitBit use): 66 
  • I have a history of ocular migraines, and would get 2-3 per month. However, I’ve only had one in the past year, perhaps due to diet changes (more on that below).

 

Anxiety issues

  • I’ve always been on edge, right from high school. I suspect I have “high functioning” anxiety. It’s never prevented me from accomplishing stuff, but it does make things more difficult. Being an INTJ doesn’t help, either. I think I have a degree of GAD, but again, not bad enough to keep me from doing stuff.
  • Medical tests/procedures freak me out. More on that below.
  • I do have a non-refill skrip for Ativan. I only take that occasionally for sleep or a red eye flight.
  • I was prescribed Setraline a few years ago, but never took it. This was when my father passed away.


Exercise intolerance

I worked with a trainer for a few years, and I always had trouble recovering. Not because I was out of breath, but many times I would get nauseous and break out in a cold sweat. Absolutely the worst feeling ever (aside from food poisoning). Nowadays, I do my workouts at home, but I can’t push myself too hard.


Adrenal fatigue?

Back in 2012, I trained heavily for a 5k marathon. This was something I had never done. I successfully finished the run, but a few days later I had what I call a “crash”. Physically, it was like I hit a wall. Even after a full night’s sleep I was exhausted. I napped most of the day for almost a week. After I got over this my stamina was never quite the same. It’s slowly improved over the years but was never what it was before the run.


Sleep

I average about 6.5 hours a night. That’s actually a lot better than it was. I don’t get sleepy or feel the need for a nap during the day.


Diet

My partner and I made some significant changes to our diet last year. We eliminated all processed food at home, and reduced the amount of gluten significantly. We still include it in our diet, but save it for dinners out, traveling, etc … We never consumed sugary beverages all that much. I’m not a 8 glasses of water a day guy, but I do try to keep hydrated. I know when I up my water consumption, I’m in the bathroom every 30 minutes.


Supplements

  • Vitalux for the AMD
  • 5,000 IU Vitamin D3 with a Vitamin K2 daily. I live in Ontario, so for half the year I’m sure I’m getting nothing from the sun.


Recently

I had some labs done back in December, and my Vitamin D levels (which have always been low), were now in the clinically deficient zone. My doc took a BP reading, and it was pretty high, around 165/95, from what I remember. I’ve always had white coat syndrome (even taking readings at home), but this was a shock. My doc asked me to take readings at home for a week and go back. My home readings hovered around 130/80, but in his office were high again.

He said I had “White Coat Hypertension” and prescribed me 4mg of Coversyl daily. When I got home, and told my GF, she asked why he didn’t send me for a 24 hour BP test. So I made another appointment and had the test done. I don’t know the results and won’t until I see my GP again. He also sent me for an EKG, which I was super anxious about, and I’m sure messed up the readings. The lab techs asked why I’m so anxious, and I have no answer for them. BP readings before root canals and other procedures are always higher.

I also picked up a FitBit Charge 3 to track my HR.

So as of now I haven’t started taking the Coversyl. I’m reluctant until we can see the results of the 24 hour BP test.

I asked him what my standing HR should be, and he said about 10-15 above my resting HR. When I told him it’s often around 110, he suspected it may be my thyroid. However, the latest labs show the range as normal. He mentioned my pulse was high, but it’s ALWAYS high when I see a doctor. Despite many years of talking about my anxiety, it never really gets through to him.

I know others here have reported their symptoms as being intermittent. For the 4 days previous to the time I’m writing this, my standing HR was in the 80s, and sometimes in the 70s. I thought this was fantastic. I actually felt “normal”, and that I wasn’t flooded with adrenalin. However, today it’s around 105 as I’m working at my standing desk. I haven’t done anything differently, and it’s somewhat disappointing.

I'll also add that I think this isn't a new thing for me. I've always felt my HR ran higher on standing, but thought that was normal. It was only talking to my GF about it that got me to thinking something was off about me.

The highest I recorded on my FitBit was 132 when standing, but most of the time it’s around 110. The odd thing is, if I walk to another room, it will drop by 5-10 BPM. It seems to go up more if I’m standing still. 

I’ve had times where I got light headed if I stood up from a crouch (build IKEA furniture, anyone?) but not very often, and I haven’t experienced that in a long time.

I don’t think my symptoms are as severe as most, but I do think something is out of whack. Standing, for me, is more tiring than it should be. In general, I almost always feel a bit “off” … more fatigued than I should feel, but also wound up. I don’t have any real stress in my life at this point. I suspect the many years of stress I had working took their toll.

I’ve also found daytime worse than evening.

I also suspect I have Hyper POTS. I’ve done a few BP readings while standing, and the readings are always higher. I understand it’s an informal test, but I feel there’s something there. I often feel like I’m flooded with adrenalin after I’ve been standing for awhile.


Other symptoms …

Over the past few years, I’ve had an on and off weird sensation in my legs. It’s difficult to describe. It’s mostly a stinging, or a feeling of water rushing through my legs. I will get the occasional pin prick and little muscle twitches. I feel these mostly at rest, sitting especially. When I’m moving around I only have a vague sensation of it. This is something I haven’t mentioned to my GP.

I’ve also had the occasional “internal” tremor when waking up. It’s like a cold shiver, except I’m not cold. I’ll get this in my chest and neck.


My main question is:

How do people here present their evidence? I’ll be honest and say I don’t particularly like my GP (even though I’ve been seeing him for many years). He often doesn’t listen (I’m sure I’m not the only one to say this), and at times brushes off my concerns. I’m also not the guy who runs to the doctor with every ache and pain. I’ve thought about switching GPs, but all the good ones around here have their rosters full.

Part of me wants to print off a few POTS research articles and show him, but I’m not hopeful. I don’t like having to use Dr. Google, but it also feels like I’m talking to a brick wall (my GP, that is).

I’ve even considered using an Integrative Doctor (also called a Functional Doctor, I think). It would mean paying for my visits, as it falls outside of OHIP. However, if I can actually get a real look into what’s going on it may be worth it.

Any insights here would be appreciated.

Thanks in advance.

 

 

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Finding a GP that you like and you feel listens to you can make a huge difference. Don't rule out nurse practitioners. When I find a good one for anyone in our family we usually stick to them as long as we can. I had to switch because the nurse practitioner I was seeing when I first got sick just didn't know what to do. She suggested I find an internist. My internist is wonderful. She explains things to me and is patient with my questions and worries. Sometimes that in itself can help. 

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Unless something sticks out on a CBC and metabolic profile, they don't get interested. There are a few reasons for this. One, medical practices are way over subscribed. Doctors often have hundreds if not thousands of patients they see in a year and you're just 10 minutes to them. The business comes first, get them in and out. Then there is the factor of competancy and gravitas. Just like anything else, a smaller percentage are really good and the rest ho hum or suck. Then there are the biases that come from experience and the generation of their training. POTS and autoimmune diseases were once the perview of psychiatrists. Remember when chronic fatigue and what would be lyme disease were considered psychosomatic? With all this considered, unless you have a doctor that had excellent training, did residency in a busy and diverse hospital and has natural curiosity and decent intelligence, you'll get the ho hum and worse. I would say in general, look for an Internist before a GP. Where did they do their residency? Helena Montana or Bellvue in NYC? Did they go to NYU medical school or something 3rd string? I would place curiosity/intelligence/desire to find answers high on the list though. I just think POTS is in the same place CFS was 25 years ago and unless you're dealing with a doctor that gets it because he's seen it or knows it really exists, it just going to put you in a 10 minute bucket and you're done. 

William Osler is considered the father of modern medicine. He said that if you listen to the patient, they'll give you the diagnosis. Lots of doctors either never got that lesson or forgot it. 

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All I can say is this - you will know when the shoe fits. If the doctor listens to you, addresses every one of your concerns and explains his/her reasoning for ordering or not ordering tests - that is a keeper. Anyone who dismisses your symptoms ( however trivial they may appear ) is not good at their job. I would no be in as good a shape as I am without my PCP who stood by my side from the beginning and never let me down. Keep looking until you are comfortable with what they have to offer you. 

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I'll also add some doctors don't like knowledgeable patients. I don't know if it's ego or what, but if you come off informed and asking questions like someone in the health field and you're not,  you could be labeled a professional patient. I think that accounts for a lot of dismissal by doctors. Ever see the episode of Seinfeld where Elaine tries to get a doctor to check something out and there's a note in her record that she's uncooperative or something like that and every time she goes to a different doctor, they are so interested until they read her permanent record. I have to wonder if that happens for real. 
 

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I agree that finding the right medical provider is key. On your path to finding that person, keep track (as you are) of specific symptoms and associated information. 

My experience is similar to yours. I did a lot of reading, figured out what I had, and then the doctor agreed with me. I did the NASA ten minute lean test (directions at Bateman Horne Center) multiple times. I printed up neat charts of my numbers. I went into the appt saying ‘I believe I have POTS’ and handed over the charts. You could succinctly list your primary symptoms. I’d take a peer reviewed article or two - particular to hyper POTS if you’re pretty certain that’s your particular experience. Most medical care is not set up for much else. There isn’t the ferreting out of what is causing unusual or transitory symptoms. There’s no Sherlock Holmes in a white coat eager to solve your case. I say make it blantant and easy. The doctor can then confirm or refer. If you can get a doctor to confirm the diagnosis, then there are specialty referral institutions where you might get more specific interest in the details of what happens for you. 

I think focus on the objective data - if your BP/HR tell the story, then let them lead. Use your other symptoms as supporting evidence. I think doctors are more likely to blow off subjective reporting. 

I hope that you find some medical support and get the care that you need. All the best to you. 

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4 minutes ago, JimL said:

I'll also add some doctors don't like knowledgeable patients. I don't know if it's ego or what, but if you come off informed and asking questions like someone in the health field and you're not,  you could be labeled a professional patient. I think that accounts for a lot of dismissal by doctors. Ever see the episode of Seinfeld where Elaine tries to get a doctor to check something out and there's a note in her record that she's uncooperative or something like that and every time she goes to a different doctor, they are so interested until they read her permanent record. I have to wonder if that happens for real. 
 

It can. My Sister in law was labeled depression and hyperchrondric. Turned out she had MS with low pain tolerance. She had numerous issues over the years when they would finally test they would find something. She had a sore throat (doc said strep) every month for a year. A nurse practitioner felt something one time she went in. Turned out she had nodules on her thyroid. 

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2 minutes ago, StayAtHomeMom said:

It can. My Sister in law was labeled depression and hyperchrondric. Turned out she had MS with low pain tolerance. She had numerous issues over the years when they would finally test they would find something. She had a sore throat (doc said strep) every month for a year. A nurse practitioner felt something one time she went in. Turned out she had nodules on her thyroid. 

There's a lot of bad medicine out there. For every Dr House there are 100 Frank Burns. 

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Thanks for all the comments.

JimL: re the “curiosity/intelligence/desire” thing. Yeah. I get the impression he’s tired—almost lackadaisical. He gets grumpier each time I see him. He’s cut back to 3 days a week, in recent years. I keep hoping he’ll announce he’s handing the practice over to a younger GP. I keep bringing up my low Vitamin D, and he grunts “just keep taking your supplements”. Um. I’ve been taking 5,000 IU a day for years.

brainchild: I haven’t mentioned POTS to him, and so far I’ve kept it strictly about the symptoms. I’ll see how it goes on my next visit, but I’m arming myself with some articles. I would love it if he’d just refer me to someone else.

He’s also very popular with elderly patients, and often chit-chats with them. I regularly wait over an hour for my appointment, sometimes up to 90 minutes. I appreciate that he doesn’t rush his patients, but I think sitting there, waiting, isn’t helping my BP. 

I’m sure most of us would love it if our doctor were eagerly awaiting to hear our roster of symptom, ready to investigate them all with enthusiasm. I remember another Seinfeld episode where Jerry tells George he shouldn’t just have one therapist, but a whole team, having meetings about him all day.

My GF has an appointment with her GP at Toronto General today. I’m tagging along, and may ask a strategic question or two.

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Curious why you haven’t mentioned POTS. My impression is that it’s not a common diagnosis and many doctors either don’t know about it or don’t believe it’s a real condition. If he doesn’t know about it, then he’ll never get there for a diagnosis. Seems to me if you’re pretty sure you’ve got something, then you’re only hurting yourself by not advocating for yourself. I have a family member who goes to the doctor with vague symptoms and waits to be told what it is. That’s been going on for 30 yrs. If I were you, I’d test myself at a regular interval and go in armed with data and peer-reviewed articles. It worked for me. I’m so much better just two weeks after confirming POTS. 

Are you able to change doctors easily? To me, it sounds like you’re overdue for a change up. 

Please keep us posted as to how you are and how this is progressing. 

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Point taken.

At my GFs appointment yesterday, we asked if her GP was taking on new patients, and the answer was yes, but only family members. I'll be making the switch. I lucked out here. It's not easy to find a good GP.

It's not particularly convenient to get to (downtown Toronto, so I'll be training it in from the 'burbs). The way I figure it, it sit in my current GPs office for 60-90 minutes, or spend the time in transit to Toronto.

I'm always impressed when I see the operation at Toronto Western Hospital. They are almost always on time. The nurse takes several BP readings before you see the doc. Everything is electronic. It's a teaching hospital and her GP heads up the wing. The resident docs always ask questions. They genuinely seem interested.

My GP, on the other hand, is always thumbing through a folder of papers a couple of inches thick to find info.

 

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That’s great news! Congratulations! 

I get that the commute is a downnside. I also see it as a do-able hurdle to cross to get good care. Not to say others have it worse, but some people have to travel out of state to get what they need. 

I hope that your appointment isn’t too long a wait and that it is what you need to get you on your way to feeling as best as you can. 

I’ll advocate for the doc and suggest that you organize your info and be frank about what you are thinking. They’re just people and that doctorate degree doesn’t come with mind reading capabilities nor a crystal ball. Make the most out of your good fortune!

Wishing you all the best! 

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