I have one of the best endocrinologists in the country, which is great. The problem with that is he’s extremely busy and its near impossible to get an appointment with him. He has been managing my weight loss, and my Hashimoto’s, because they’re very simple, but refused to manage my adrenal insufficiency or my extremely high bone density. My bone density represents a very rare bone disease, I’d have thought that would be interesting, but apparently its just a pest.
My previous endocrinologist is a class A b1tch. She dumped me as a patient, and wrote very rude things about me in the letters to my doctors. I know this because they told me. Two doctors, independently of eachother, four months apart, told me it’s good that I am no longer seeing her because it clearly wasn’t a good relationship.
Honestly, that’s 100% on her. I am always polite and respectful. I remained so even when she called me stupid. No doctor should ever call their patient names or insult them. Her ego is such that she thinks she’s entitled to treat me any way she likes. She is unprofessional and I know realised completely incompetent. She can’t even manage Hashimoto’s, which is about as simple as it gets.
My GP told me that she had written things “that don’t gel with the person I see in front of me, with my own perceptions of who you are as a person. I go with my impressions of a patient, I go with my guts, but what she’s written here is inappropriate because other doctors might not do same and might misjudge you. I would find another endocrinologist.”
The power doctors have over your health care if they don’t like you is staggering. But that’s another (important) blog post.
Back to today’s appointment.
It was a five-minute appointment. I told him my weight was stable, I tried to tell him that I am working on eating more food, he didn’t listen. He started wrapping up the appointment after I told him my current weight and that I was experiencing no troubling side effects. He wants to see me again in six months.
Wait, I say. I need to manage my adrenal insufficiency and I have this rare bone disease.
He says “Aren’t you seeing Dr (asshat) about that?”
I tell him no, because she won’t see me if I’m seeing him. I tell him she has forwarded my records to him.
He says she’s sent him some letters.
He asks about my hydrocortisone doses, and prednisone doses and tells me that I am on too much (no shit) and that I should get off the hydrocortisone completely. Wow, ok. That’s the opposite of what every other doctor has told me. But this guy is a professor of endocrinology, a previous head of a state AMA, he is on the cutting edge of weight loss science, involved with the biggest trial in history and he’s the reason why I am only about 5kg heavier than my ideal weight now. I trust him.
And to be honest, hydrocortisone offered no benefits over prednisone. The main difference is the half-life, hydrocortisone is supposed to better mimic the natural circadian rhythm of your body’s own corticosteroids, which we are replacing. Hydrocortisone is metabolised quickly and dosed three times a day. Prednisone is long acting and dosed once a day in the morning. Frankly, prednisone is far more convenient. So I’m fine with that.
Starting today, I reduce my hydrocortisone from 20mg morning, 8mg lunch time, 4mg at 5pm to 20mg morning, 4mg at lunchtime. I need to email him in two weeks to tell him how that’s going.
I told him I’d do that. I tried to tell him that I have tried this taper over and over, for many years, and I cannot get lower than a certain line. I get very sick, feel dizzy, feel faint, am unable to stand up let alone exercise. The symptoms are the same as those for adrenal crisis, but I understand that my steroid dose is too high for that to be the case.
I ask him if my constant diarrhea could mean that I’m just not absorbing the full prednisone dose, and therefore getting less steroid replacement than I need.
He says no, hydrocortisone is absorbed in the stomach, not the small intestine, so that could not be a cause.
Ok. Good. Glad to have that answered, it was just a theory.
I ask him if I should make another appointment in two weeks, and he says no, he’s too busy. I won’t be able to see him for six months.
Great. We didn’t even talk about the bony tumour in my skull, my hearing loss and tinnitus, my extremely high bone density, my rare bone disease, nothing. He’s just not going to take it on. He doesn’t have the time.
So what do I do about that?
I know that my adrenal insufficiency is going to become the big problem it always is. And that he’s going to wash his hands of it.
My extremely dense bones are an anomaly that my immunologist feels is important, because its such a rare anomaly (1:3,500,000).
I want to feel better. I don’t want to be bedridden, and that’s what happens when doctors taper me too low on steroids. They tell themselves that I will ‘get used to it’ and have to ‘find a way live with it’ essentially saying I’m just a bit of a baby, and I need to work harder and accept a bit of difficulty.
They do not understand how sick I get when my steroids are tapered too low. I do not care what the physiological replacement dose is, I need more than that. There must be a reason why, and its their job to figure that out.
He said if there’s a problem we can measure my morning cortisol. It’s been measured many times before. It should be north of 150, but mines always around 30. My body makes next to no cortisol on its own. I am NOT weak, I am in fact one of the toughest people I know. I know that, I don’t expect anyone else to believe that necessarily, but I know that it’s true. If these doctors bothered to get to know me, they’d know it too.
But they don’t have time.
Honestly, its about time doctors realised that the type of person you are, your personality and your attitude DO play a huge part in your treatment success or otherwise. That they need to get to know a person to understand them so they can ascertain what may be going wrong.
A very motivated person who is proactive and compliant is going to do better than someone who is passive or even lazy and haphazard. If a doctor knows a person to be compliant and motivated in the past, its unlikely that their non-compliance is the problem. Something else is going on.
Assuming that I’m lazy or weak is doing me a huge disservice and preventing me from receiving quality care. But there is nothing I can do about that. My endocrinologist is the best in the country. So good that he doesn’t have time to see me.
Hopefully he has a registrar or someone he can pass me down to.
Doctors do not like rare, complicated patients. While this doctor is respectful and treats me very well, he isn’t going to make time for me. There’s not much I can do about that.
I’m very grateful that he has helped me with my weight loss. That has improved my quality of life and psychological well-being immensely.
But where does that leave me with the rest of my endocrinological problems? Figuring it out for myself, I guess.
