LindsayI feel like most people with complicated chronic illnesses deserve honorary medical degrees. Every week I spend countless hours reading medical journals and researching different illnesses. The number of doctors I have had to educate on my condition is astounding. I actually left my old PCP because he had never heard of postural orthostatic tachycardia syndrome (POTS), and didn’t seem to have any interest in learning about it. I see a cardiologist for my POTS, but its important that the doctor who sees me most often at least have a basic understanding.
As you know, when I was first diagnosed with POTS, the doctor walked in after the tilt table test (as I was still strapped to the table), told me I had POTS, to drink a lot of water, and that I would never have kids (which is incorrect – I have POTS friends who are mothers). Needless to say, that was the last time I saw that doctor.
Towards the end of last year when I suddenly dropped a lot of weight, I had a conversation with a doctor that went like this:
Again, last time I saw that doctor. I was born with good genes and have almost always been at the target, or even slightly under, the suggested weight for my height. There’s something wrong when I lose ten pounds without trying.
Most recently, I saw a doctor about imbalanced hormones. As you may remember from a previous post, I have had an awful time getting off birth control. It has been over 14 months, and I still have crazy symptoms. I finally made an appointment with a doctor to discuss it. After describing all of the difficulty I have had since I stopped birth control, her advice was to go back on birth control. If that’s the only answer, then great, I’ll go back on. But, shouldn’t we try something first? Check my hormones, run standard blood tests to make sure it isn’t something else? I left that visit nearly in tears – probably 70% from the hormones, but a good 30% from frustration at the doctor.
Sometimes you have to think out of the proverbial medical box and take matters into your own hands. I ordered my own hormone tests for estrogen, progesterone, testosterone, DHEA and cortisol. Can’t say that I’m surprised the test confirmed that I have a major imbalance going on. I called another doctor to make an appointment, and was told I’m too young to have a hormone imbalance because I’m not going through menopause.
Sigh.
Many POTS patients are first told that their symptoms are just from anxiety, or that they’re just seeking attention. Friends, you know your body better than anyone else. If suddenly something is happening that did not happen before, get it checked out, and don’t let any doctor tell you “it’s all in your head.” It’s not.
Being chronically ill is an ongoing uphill battle. You probably fought to get an accurate diagnosis. You’ll fight for adequate treatment. You’ll battle to be heard and believed. You’ll never stop fighting, but you’ll be stronger because of it.
Go into your appointment with a list of topics you want to discuss and tests you want run. Be transparent. If you’re disappointed in a doctor, let the doctor know how s/he failed to meet your expectations. If you have a great doctor, let the doctor know s/he is appreciated. If a doctor isn’t working for you, fire him/her. Your doctor works for YOU. Expect the same quality of service you would demand of yourself.
As I’ve said before, life is too short for bad sex, cheap beer, and doctors who are idiots. Write that down.
Some of the best appointments I have had were with alternative medicine practitioners. Earlier this year I went to a naturopath who was exceptional. She spent 45 minutes listening to me, asking a detailed history. She was very compassionate and, although she didn’t know much about POTS, she knew a lot of about the autonomic nervous system (ANS), and thus understood how a dysfunction of the ANS would affect my body and, more importantly, my life.
If you’re having difficulty finding a doctor who understands or who is willing to treat you, I encourage you to look into alternative medicine. Insurance often does not cover alternative medicine practitioners, although I recommend contacting your insurance to be sure. Mine will pay for acupuncture, but not other holistic type of treatments. Finding answers, being heard is priceless. I think the best treatment comes from a team of both traditional and holistic doctors who complement each other’s style, and a knowledgeable, confident patient. Be your own advocate.
Friends: I’d love to hear about your experiences with doctors, traditional or alternative.
“I love the person I’ve become, because I fought to become her.” – Kaci Diane
Smell ya later.
– Linds
Was that an endocrinologist who said to go back on birth control and didn’t even check your hormones!? That’s ridiculous.
It was an internal medicine doctor. She isn’t an expert in hormones, but she certainly could have referred me to someone who is.
I agree she should have. It’s not her call to make – that’s why there are specialists. Does your insurance require referrals?
Fortunately no. I have an appointment with a specialist, but a month is the earliest I could get in.
I’ve had good doctors, I’ve had bad doctors. I’ve had doctors that appeared to be good then turned out to be crappy once they understood I’m not an easy fix. I’m too complicated.
I’d love to go to an alternative practitioner. As you said insurance doesn’t normally pay for it. And I’m having trouble getting my mental health providers covered. sigh.
If we could get the care we need from the people we need to see without worries of expenses, that would be a fine day.
It sure would! That’s one of my biggest frustrations with the health insurance industry. I feel it’s a never ending cycle where we’re sent to doctors who prescribe lots of pills, which then cause side effects and require more treatment. I don’t know that natural medicine is the answer, but maybe a combination of traditional and natural is. Insurance should at least help us find out.
Functional medicine with traditional and alternative medicines working together, I’d like to try it at least. That’s only for the elite. And that’s sad.
Love your posts!
Thanks for the follow! I came to check out your blog and this definitely caught my eye. I struggled for 3 years to get a diagnosis that I felt was right, or “good enough”. My health started drastically declining in February or January 2013, enough that even with severe doctor anxiety (I pretty much have to be afraid of dying to go in) I decided to check things out. I had been fluctuating weight pretty drastically, had tremors bad enough to keep me from doing lots of things with my hands, memory problems, joint and all-over body pain all the time, trouble walking and even standing still upright (apparently I leaned without realizing it), and I had even fainted for no reason one day after getting out of bed to use the bathroom. Along with a list of other symptoms. A GP did a complete blood panel with autoimmune panel to check for autoimmune diseases, x-rays and a CT scan for my back and body pains, and an EKG for the fainting. When I went back for the results they realized my ANA had popped up positive signaling an autoimmune disorder, but all my other autoimmune tests came up negative (like for lupus and other specific disorders). The doctor still thought I had lupus, so she sent me to a rheumatologist, and thus began my arduous journey. The rheumatologist (a 2 hour drive from my home) did a couple of walking tests and ended up telling me I couldnt have lupus, I just wasn’t sick enough, and told me it was all my severe anxiety disorder but to see a dermatologist for my facial rashes that I felt mimicked the butterfly rash of lupus. I never went to the derm he referred me to, instead I went back to the GP for a referral to a neurologist because I felt my symptoms pointed to MS. The neuro (another 2 hour drive) did an MRI but at my second appointment threw me out of her office telling me that nothing was wrong with my head, that she thought I had gastroparesis and my guts were “dying”. She didn’t even give me anything for the migraines I had been having for the past half a dozen years (not often enough to be considered chronic though, by medical standards). I never went to the gastroenterologist she referred me to either.
After that, which all took about 8 months to get to that point, I gave up. I figured I would wait to get even sicker, because apparently I just didn’t look sick “enough” for any docs and maybe if I got sicker someone would listen to me. That took a couple years to happen. In December of 2015 I just started becoming even more exhausted than I normally am, and was dealing with 24/7 back pain that NSAIDs did nothing for. I went to see my old GP (the one I had tried to go to originally but he had been out due to a stroke at the time) and he took one look at me, my symptoms, and my tests and diagnosed me with fibromyalgia and arthritis in my spine. Finally he listened to me and put me on the medicine I needed.
I still think there is something else going on in addition to the fibro and arthritis and the multiple anxiety disorders and the TMJ (dx’d long before any of these other issues), but I’m finally able to get the medicines I need to function like a somewhat normal person (my back hurts all the time and leaves me bedbound if I don’t have painkillers). I know so many people who spend so much longer, sometimes as long as 10-15 years, just trying to get an answer, so despite how annoying it was I’m “lucky” in that aspect. But I wish that doctors would not jump to the immediate conclusion that those of us who come in with a list of symptoms are overreacting or simply hypochondriacs looking to get attention.
Sorry for writing practically a novel, but that’s my story. Love your blog and thanks again for the follow. 🙂
Thank you for your comment! I’m glad that no one ever told me to my face that they thought it was just anxiety, but I’m sure many of them thought it or even wrote it in my chart. I forgot to include this above, but one doctor talked to me for about 2 minutes (although, in his defense, his intern talked to me for 20 minutes), said he couldn’t help me, asked the intern and nurses to leave the room, then asked me for free legal advice. There are some wonderful doctors out there that stick with us and fight for answers, but there are some bad ones, too!
Thanks again for sharing your story!!
Wooooow, free legal advice after that? You have to have some stones of steel as a doctor to do that!
I’ve lost count of the number of times I’ve been told it’s my anxiety. The therapist I was going to at the time all this was happening even dx’d me with “conversion disorder”, which is the actual medical terminology for “it’s all in your head”. A mental health disorder that manifests real physical symptoms of a not-real physical illness, making you think you have an illness when you don’t. Worse, after all I had been through with those doctors, I believed it for 2 years before things got so bad I could no longer take it. Luckily that was when I finally found one of the elusive good doctors!