Getting good doctors isn’t about luck

I lied. It’s a little about luck. But mostly it isn’t. Mostly it’s about research and persistence and organization and all sorts of other things.

I have some really great doctors. I feel so lucky to have them. My friends with chronic illnesses say I’m lucky to have them. But the truth is, luck had little to do with it.

I’ve worked damn hard to get this line-up of doctors on my side, and I had to go through a lot of shitty doctors over the years.

First I spent years in a system where I could only see doctors within that group. Twice I got referred to specialists outside that group because they didn’t have anyone to help me, but each time I only saw that specialist once. And in hindsight, I realize that those specialists had really been on to something each time. Damn. My diagnoses got delayed for many years because I played by the rules and stayed in that group.

Then I moved, and I didn’t live anywhere near that group. Since I was a student (in graduate school) I was able to stay on my parents’ insurance, and since I was out of state I was allowed to see another doctor and insurance would reimburse me. I decided to use this to my advantage. It was a conscious decision.

Back then I thought that the pain was my only treatable symptom, so I went on a national arthritis group’s web site and saw that they mentioned rheumatologists. I’d never seen a rheumatologist, except for one of those outside, 1-time referrals, and all he did was rule out Lupus. Yes, I’d had more than 10 years of joint pain and hadn’t been examined by a rheumatologist. It sure was in a shitty system.

I found a list of local rheums, made a lot of phone calls, found one that my insurance would reimburse me for, and made an appointment. Within a few weeks I had my first diagnosis: autoimmune disease. Shameful that it took more than 10 years, but I finally had it! It wasn’t in my head!

I was lucky. I was also opportunistic.

A few years back it was obvious I wasn’t absorbing iron properly. I tried every type of supplement. I ate red meat and spinach. But my ferretin was still way too low. I asked around and researched and found a great hematologist. On my way to the appointment, I realized I never got a referral from my primary care physician! Without that referral, insurance wouldn’t pay for it. Damn! So I called up the office and they wouldn’t give me the referral because this doctor was at a different hospital and they got a lot of pressure to only give referrals to doctors at their own hospital. But I already had this appointment, I was in the car already headed over, and this guy was supposed to be really good. She wouldn’t budge. So I fired her. I immediately looked for a new doctor.

In case you’re wondering, when I arrived at the hematologist’s office I was basically in tears. I had waited 6 months to see this doctor, and now I didn’t have a referral. They called out their billing specialist from the back office. He was a nice guy and reassured me that they’d work it out. I saw the hematologist. He ordered iron infusions and they helped. The billing specialist also recommended his own PCP, who I switched to immediately. (That didn’t work out, but that’s another story.)

I didn’t liked my doctor, so I found someone else.

Years before that I wanted to see a specific endocrinologist, but my doctor wouldn’t give me a referral. I tried other doctors with no luck. So I reverse engineered it – I called that endocrinologist’s office and asked which doctors give referrals to him. His administrator wasn’t allowed to tell me that, of course, but she said that she could tell me that she and her coworkers all saw Dr. J and loved her, and that they recommended her. Sure enough, I loved Dr. J, and she gave me that referral to the endo.

I went to a lot of trouble to find a doctor who would give me the specific referral I wanted.

Now I just started with a new doctor who I love. I love the approach of his entire office. I love that we have conversations about my treatment as equals. I tell him about research I’ve read and he listens respectfully, then counters with his own argument. He’s glad that I debate with him. I wanted to see him years ago but I had doubts about leaving the hospital network I was in. I should have done it anyway. Now my PCP can’t read the notes or tests from my specialists and they can’t read his because they’re in different hospital networks. That means I have to be the one to ferry records back and forth. It’s a pain in the ass, but it’s worth it. I love this guy, and I’m certain my treatment will be much better. I waited longer than I should have, but at least I finally made the switch.

I took a chance and it was worth it. Sometimes it’s not, but I have to try.

I know that some people have fewer options. There’s only one specialist within 50 miles. Or their national health insurance assigns doctors to them and they aren’t allowed to switch. But I also know that sometimes we follow rules or conventional guidelines when we shouldn’t. Sometimes we have to find loopholes. Sometimes we need to ask for help. I have found many workarounds to the “rules” over the years.

It doesn’t always work out in my favor. I admit that. But I also know that almost every single health improvement I’ve had has been because I did my own research and pushed to find the doctors who would give me the tests and treatments that I felt I should try.

I have a kick-ass team of doctors now. But that didn’t happen by accident. I worked fucking hard to make it happen.

Lucky me.

What has your experience been? What will you do to make your own luck? Please share in the comments. We can learn through each others’ experiences!

10 Responses to Getting good doctors isn’t about luck

  1. I’ve just been lucky that I found a good primary (recommended by family members) who referred me to good specialists. My husband has the same primary and hasn’t been so lucky. Fortunately, our insurance doesn’t require a referral to see a specialist so he’s been able to find what he needs on his own.

    • chronicrants says:

      That’s great, CM! I’m so glad you and your husband have both found your way (thru different paths) to the medical care you need! It sounds like more than luck, though. You asked around to find a good doctor. And your husband got referrals he didn’t like, so he made the effort to fire them and go find someone better. Go for the two of you!

  2. CJ says:

    6 different doctors of varying specialties and general practice… I was told by one GP ‘you’ll get better eventually’ which amounted to ‘go away and give up’… but I didn’t and eventually also got an autoimmune disease (Hashimoto’s) confirmation only because the newest doctor was willing to look beyond normal test result levels. Everyone, you need to keep trying!

    • chronicrants says:

      Good for you CJ! It took me ages to get a Hashi’s diagnosis, too, not to mention the decade+ to get my others. Great job! I’m so glad it’s worked out for you!

      • CJ says:

        Thank you, sorry I only just saw your message. Doesn’t it seem so obvious now with Hashimoto’s? I am not sure why they don’t test for it more often and earlier. I still wonder some times though, why my levels are in the ‘normal’ range… but the medication is working so…

      • chronicrants says:

        It’s great that your meds are working and that you’re back into the “normal” range! Congratulations! And yes, in hindsight it’s so obvious. I wish I had a time machine so I could clue in the me of 2001 to what was going on.

  3. Ms. Mango says:

    Right now I have 4 doctors in rotation. My GP I absolutely lucked into, he was my doctor when I was taken into the ER for a seized up finger and after a follow up with him I politely asked (even though I knew he wasn’t taking new patients) if I could continue testing and treatment with him instead of my GP back in the city. While sometimes he is extremily busy and apointments are short, he is understanding, he does his research when I bring up information he hasn’t considered before and above all for a GP he trusts that I know my body and it’s symptoms better than he does. Where I live though, unfortunately all specialists have to come from a referral (other than private psychiatrists) so it is all luck of the draw and it takes time to get a new referral when you don’t like the one you already got. It makes it frustrating and I think that’s why so many people here stick with doctors they don’t like because its better than not having one for 2 years. While 4 now already seems like too many, I am on the waiting list for 2 more in different specialties. I’m a little worried to start all over again with new people, but hopeful that in the end it will help.

    • chronicrants says:

      That’s fantastic, Ms. Mango! It sounds like more than luck with your GP, though. Sure, you met him by coincidence, but you made an effort to see him even though he wasn’t taking new patients and some of his appointments are short. You made that effort! And it sounds like you’re making a big effort to see new doctors, too. I know how hard it is to start with someone new, and it’s harder than most people realize, so good for you for making that huge effort for the benefit of your health! Good luck with the new ones!

  4. Karen J says:

    Hey, CR!
    I so-o-o appreciate reading of “the great doctor hunts” you’ve been on over the years!
    I’m starting down that road, myself, now – I have low thyroid function, due to a dose of radioactive iodine, not because I have Hashimoto’s disease. I’ve seen three PCPs in the past year-and-a-half; currently have a referral endo; and just made an initial appt with a third doctor, for July!
    I haven’t even begun to tackle my ADD symptoms medically – have been making progress through therapy (hurray!)
    Bright Blessings to you!

    • chronicrants says:

      Oooh, good luck Karen!! It sounds like you’re being careful about it, which is great! Maybe ask around in the Stop The Thyroid Madness groups on FB for recommendations in your area, too? I know it’s a tough journey, but I hope it works out quickly for you. Good luck!

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