Getting the Facts Right

One of the most frustrating things I’ve come across with my Adrenal Insufficiency is Doctors not having heard of it and getting even basic facts wrong. I’m a reasonable person, so I don’t expect doctors to know everything about every illness, but I do feel that if they knew I was coming to see them, or they’ve met me before and are following up, a few of them would benefit from a bit of research about it to make all of our lives easier. I don’t know everything about it, it’s hard science. And I was hopeless at science: I wrote about ‘casanova’ in my GCSE physics instead of ‘supernova’ because I somehow got the two mixed up. I clearly ended up on one of those ‘what idiots write about in exams’ threads on Reddit! So I can only explain so much. But then the Doctor needs to actually go away and work out the science so they can treat me properly.

Things got better since I started seeing my new endo, but I ran into some issues today when one doctor referred me to a new consultant and inadvertently got it wrong. Here are some of the things I come across regularly:

  1. Getting my diagnosis completely wrong. Today the doctor (who knows me well) referred me to the consultant as having ‘an underactive adrenal gland’. Which is close, but not strictly true- my (current) diagnosis is Secondary Adrenal Insufficiency, which means that something else is making it so that my adrenal glands are underactive e.g. pituitary not making ACTH telling the adrenal glands to make cortisol, which is the common secondary problem. It doesn’t sound like a big difference, but if I’ve been sent to a new doctor to help me, it’s quite important they understand which bits of me don’t work, as it might help with their investigations. I’ve also been told I’m hypothyroid a lot (because people have heard of that one), which is also wrong. Or Hyperadrenal, which is the opposite of what I have.
  2. Some people think I can’t produce adrenaline. It’s because it’s got the word ‘adrenal’ in it, so I can see why they guess that. I can make adrenaline, and if you give me adrenaline rather than cortisol when I’m in crisis, you’ll just kill me quicker.
  3. Steroids= bad for everyone else, but good for me. I will die without steroids. I won’t be coming off steroids ever, unless something miraculous happens. Yes, they give me a whole host of bad side effects, but death by not taking them is the worst one. Yet lots of people have told me I need to taper and get off them.
  4. My Hydrocortisone mimics what cortisol production should be. Which is why I take it 3 times a day. Lots of people try to give me it in one go in the morning when I’m in hospital, which usually ends up in some kind of discussion and me having to translate my chart. Junior Doctors sometimes get my baseline wrong when they’re handing me over and try to blame me for miscommunication, which I find really annoying. Or I question the advice they’re giving me (because it’s wrong and not what the consultant said at ward round), insist they go ask their consultant and the junior doctor comes back and says ‘the consultant has changed his mind’. Which is sometimes the case, but it’s usually the junior doctor hasn’t understood what me or the consultant said in the first place.
  5. Timings are important. My dose times don’t tend to coincide with drug rounds, so nurses sometimes think I’m being awkward when I’m insisting on being given it immediately because it’s already 40 minutes late.
  6. Speed is also important. I need to be triaged pretty quickly in an emergency, but if people haven’t heard of it or I’m not at my home hospital, they sometimes don’t appreciate this.
  7. Stress dosing is an actual thing and not something I’ve made up. Lots of doctors don’t understand stress dosing. I’m pretty sure I have a little speech I rattle out now.
  8. Getting the maths right is important. If they get my baseline wrong, then that means their stress dose maths is going to be wrong. And you can’t miss a dose and try and make it up later, because it’s more complicated than that. There have been so many times when I’ve tried to point out that I’m 20mg out when someone has given it to me late and I can’t ‘just skip it and be given the next one’ like they’re telling me to because my Total Daily Dose will be out, which will cause more problems the following days. Add in if I’ve been given it IV or IM and it gets even harder.
  9. Low BP is characteristic of Adrenal Crisis, but some people have High BP in adrenal crisis/pre-crisis. I am one of those people. My BP comes down when you give me IV HC, it’s not the IV HC which is making it high.
  10. My Fight or Flight System doesn’t work. So having these conversations with some doctors who just won’t listen to what I’m saying can create an even bigger problem the the original one- confrontation drains cortisol fast. Arguing is knackering at the best of times, let alone when you’re feeling ill. Lots of doctors are great and say they’re not sure, but the ones who aren’t tend to argue back quite spectacularly.

The Doctor today was quite happy for me to explain my illness after she realised the referral might be wrong (it also said hypothyroid I think). But she still misunderstood some of it and I had to keep correcting her. Like I said, I’m not an unreasonable person and I was grateful she was taking the time to clarify rather than plough on regardless and potentially get it wrong. But it adds a whole different layer of stress about going to a doctor, and, because I have to explain things, a lot of the appointment can end up being me explaining my existing diagnosis, rather than getting help or being asked questions about potential new ones.


5 thoughts on “Getting the Facts Right

  1. mo says:

    It is frustrating when doctors don’t understand this disease, or when they argue with you about treatment. Anytime I have been in the hospital I always have my own supply of HC within reach. Just make sure you hide it from everyone!!

    Liked by 1 person

  2. Gemma says:

    Re number 3: when I was first diagnosed with Addison’s, I told some people at work what I was taking for it. Now I don’t tell anyone unless they ask me and are actually up for listening to explanations, because when you’re just recovering and someone says to you “Oh no! Don’t take *steroids*! They’re terrible!” and they’re the Thing that’s making you better, you don’t tend to want to talk about it further with that person.

    Liked by 1 person

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