#but it sucks to directly ask my doctor ‘hey I’ve noticed my heart rate is rly high all the time meds or not’

[lightblueminecraftorchid]

No you know what I’m not done.

I got diagnosed with autism in April 2022. It was a weird diagnosis and I will gladly own up to it. The person who evaluated me felt that my anxiety symptoms impacted my life more than the autism ones. Sure. In most contexts, I would probably agree with them.

One context I would not agree with them is with food.

I do not (as far as I know) meet the criteria for ARFID. I generally have an interest in eating food, I do feel hungry*, and I will eat more than 8 foods. However, I am autistic, and one of the biggest symptoms for me is food-related sensory issues. If there’s one thing I wish I could magically fix about my brain, I wish I could fix that.

*my hunger signals are kinda messed up. We’ll get to it.

I struggle to eat most vegetables. I struggle to eat a good amount of fruit. I’m picky when it comes to meat. Legumes are definitely off of the table. Without carbs and fats, I would probably starve to death within a week. Can’t do soups, stews, chilis, anything in a crock pot, any of it. Thanksgiving is my least favorite holiday bc I can’t eat shit.

I have told my PCP this. Multiple times.

I have also told my PCP that when I feel hungry, I feel bad. I have a short window between “oh I want food” and “if I don’t eat in the next ten minutes I will stumble like a shuddering corpse towards the nearest vending machine”. I have been told, by my doctor, to snack more throughout the day and to try and space out my meals, so I don’t go long periods without eating. Great! Glad to do that.

I had a PCP appointment in July. Yearly well visit and all that. I was seen by three separate practitioners, because the one I signed up to see was running behind.

Two of them mentioned my weight. I told both of them that I was aware, that I was doing my best to eat healthy given the circumstances, and that it wasn’t a big concern for me. One of them insisted that I try out their weight management program, “just to get the weight under control”. I reiterated that I wasn’t concerned about my weight as much as I was about other things, such as feeling awful and sick from hunger. He quickly backtracked and said I should focus on eating more small snacks with protein in them. Space out my meals. Buy some cheese sticks or something.

Cool. I’ll go do that.

I got a standard blood panel. My levels were all pretty normal. My LDL was slightly elevated, but the person who read me the results (4th person I’d seen that day) said not to worry, it likely wasn’t a big deal. Normal fluctuation.

I go home. Buy some cheese sticks.

Several days later, I get a message in my health app from my PCP. Not the ones who saw me, by the way. Different person. She wants me to know that my LDL is slightly elevated, so I should really try to diet and exercise more, and have I considered cutting down on carbs, sugar, and fat? My weight is pretty high, and even though my liver enzymes are normal, they look kinda elevated now…

I hate that the communication between PCPs is so poor. I hate that the number on a scale affects how the rest of my lab results are interpreted. I hate that I have to have this conversation, again, in typed text this time, so I can have a written record to show people. I hate that I’m being recommended more appointments and more tests and more programs that are not related to the actual concerns I am asking about. I hate how one arbitrary cutoff point is a big deal that needs more time and testing and attention, but another one is ignored. I hate how, despite me being very honest about my eating habits and exercise and the sensory difficulties I’ve had with food, not one of these doctors has even remembered to write it in my chart. I hate how I’ve had to remind this practice of my autism diagnosis 3 separate times already. Every time, I’m told it’s in my chart now. And then, every time I ask again, it’s magically not there.

On that same visit, my heart rate at rest was 114BPM. I hadn’t take my ADHD meds in a week at that time. I had to bring up that that was too high. Every doctor I talked to seemed shockingly unconcerned.

I went back and checked my medical records, and that elevated heart rate has been true for years. Since I joined this practice, even. Nobody’s ever brought it up to me. Never pointed it out. Never checked to see if something else was going on.

But that weight tho. That slightly high LDL. Have you considered cutting down your carbs?

*seizes my PCP by the shoulders*

yes I KNOW what my LDL levels are. I checked. I promise. The 2 points above threshold for LDL is less concerning to me than the prospect of fucking starving.