‘Let’s Reduce Your Steroid Dose’

No, let’s not. When I hear that from a doctor it makes me want to jump up and down and have a strop. Unless they’re making an informed decision, which they’re usually not. This was from an endocrine registrar at my 6 month review. Cue lecture from him about steroids being bad. It’s always the same:

  • ideally we want you to be on 10/5/5. You’re currently on a much higher dose.
  • steroids can cause you problems with your blood sugar and put you at risk of diabetes.
  • steroids make you put on weight. You’ve put on a lot of weight since your last review.
  • they also make your bones weak and you’ll end up with osteoporosis.
  • it’s not good for your heart to be on high doses of steroids.
  • you’ll have other problems with your stomach and teeth crumbling because of steroids.
  • you might get cushing symptoms (too much cortisol).

To a lot of doctors, steroids are BAD. End of. I agree, if you’re taking them to reduce inflammation or swelling or following an operation or for something temporary. Long term steroids are bad, particularly at high doses and you want to taper off them asap, otherwise they can have bad consequences for your adrenal cortex. That ship has sailed! However, there isn’t another treatment for Adrenal Insufficiency currently, which means steroids are necessary, despite side effects. We’re only replacing what our body doesn’t naturally make.

So I took a deep breath and started my well rehearsed speech as to why I am not going to reduce my steroid dose from what it currently is unless there’s a better reason than the doctor feels like it.

You should be on 10/5/5

12.5mg of Hydrocortisone is the survival dose, which means lots of doctors see 20mg (10/5/5/) as them being ‘generous’. However, 10/5/5/ doesn’t take into account different people with different weights, metabolisms, day to day activities, other illnesses… It’s how old school diabetes used to work- everyone had to take the same dose of insulin and get on with it. Except now they can change their insulin depending on what their blood sugar is doing because doctors have realised how stupid that advice was and how crap diabetics’ quality of life was like that. Like diabetes, Adrenal Insufficiency isn’t a one size fits all, but modern medicine has not caught up with this yet. So yes, I’m on a higher dose, but I can’t get out of bed on 10/5/5.

Problems with blood sugar

Well, I’m already Insulin Resistant because one of my previous endocrinologists didn’t listen to me and my ’10/5/5 isn’t enough’ speech. So to compensate for the lack of cortisol in my body and to stop myself going hypoglycaemic (and ending up in a coma), I had to eat a lot to raise my blood sugar. Like every 10 minutes eating. So now I’m insulin resistant. Steroids make your blood sugar go up, and actually, my blood sugars don’t ever go above 6, even after I’ve eaten, which is well below ‘diabetes concern’. So I’m currently more at risk of being hypo- rather than hyperglycaemic.

Steroids make you put on weight

Yes they do in a lot of people. However, I was steadily losing weight on my Low Carb High Fat regime, until my GP said the fateful words ‘let’s reduce your steroid dose by 2.5mg’ in February and then I started putting on weight again. Why? Because I started having hypos, which you have to treat with food. Plus I feel like I’m going to pass out and am hungry all the time unless I eat. Whereas before, I wasn’t snacking between meals or eating at night. Now I’m up 2 or 3 times a night feeling awful. If I take more Hydrocortisone, I go straight back to sleep and don’t need to eat. Which would you rather- should I eat more overnight or take more hydrocortisone? Because you’re saying both are bad, but I’d quite like to avoid dying. Besides, now that I’ve put on weight again, if anything, my steroid requirement will have increased rather than decreased. So decreasing it would be doubly bad.

They make your bones weak.

Also true. I already have osteopenia (pre-osteoporosis). However, do you know what else is bad for your bones? Not getting out of bed and moving. And also putting on weight. So on a slightly higher dose I can do my physio and lose weight, and eventually my overall steroid requirement will reduce and I might even be able to manage on 10/5/5. Surely that extra 2.5mg in the short term isn’t going to make that much difference to my already weakened bones? But being able to move my joints and lose weight will definitely have a positive impact. Besides, what’s the point in having slightly stronger bones in old age when I didn’t manage to get out of bed for 30 years…

It’s not good for your heart.

You could say that about many things. Alcohol and smoking aren’t good for your heart but people still do it. I’ve been adamant that there’s something weird going on with my heart for about a year, especially overnight, and how this is linked to my steroid dose, but got told a few times that I was ‘just anxious’. My sleep study showed I have an irregular heart rhythm while asleep, so not due to anxiety. When your electrolytes are ‘off’ (low cortisol), it can cause a funny heart rhythm. And I don’t get that heart rhythm if I take more steroid. So maybe my steroid dose isn’t actually high enough?

Other problems

I could get a stomach ulcer just because I get a stomach ulcer. These things happen to ‘healthy’ people too. If I’m going to get these things because I’m going to get these things because I’m taking steroids, they’re going to happen regardless of whether I’m on 10/5/5 or my current baseline.

Cushings

Has anyone tested my blood level to see if I’m remotely near cushingoid? No? In which case we’re not changing the dose ‘just in case I get cushingoid’. If my blood work suggests it, then I’ll reduce my dose, but not otherwise.

So yes, I agree that being on the lowest dose of steroid which my body needs is definitely a good thing. But I’m not decreasing it now when you don’t have any blood work to support it and I’m still very symptomatic and have a poor quality of life as it is.

I obviously didn’t say it in as sarcastic a tone as I’ve written it, but I have this argument so many times a year it’s getting tiring. This doctor was actually pretty amenable and agreed with me after I made my points. A lot aren’t though, which is very, very frustrating. I have absolutely no issue if the doctor is making reasonable, informed judgements based on my symptoms and blood test results. But most aren’t- they are adamant that 10/5/5 is *the* dose I should be on because anything over that is bad because steroids are bad. And that’s what they’re basing their decision on, which isn’t right. There’s a bigger picture here. Yes steroids are bad, but they’re also what keeps me alive and living, so actually, steroids, to me, are pretty damn good.

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