I read lots of stories online about patients preparing for surgery and surviving post op. We hear that weaning off cortisol post op after having such high doses of cortisol damaging our bodies is akin to a person stopping heroin cold turkey. Really?! That sounds horrific and awful. Yet, we are all left wondering what is that mean in terms of symptoms. Everyone wants to get a sense for what is normal if the suffering they are feeling post op is normal. AND... wondering if and how they can get through it.
When I read these posts, this is my reply. I wanted to share it here in hopes it helps folks who frequent this blog.
What cortisol dose did you start after surgery? What cortisol dose are you taking now? We Cushies often need more cortisol than our docs give us post op. Many times, endos give patients 20/10 mg hc because they have all decided this is the proper replacement dose or physiological dose. Some patients follow their advice, suffer, but endure. As a 10 year veteran, what we have learned from each other in these groups is this: the cortisol surging through our bodies pre op / with cushing's was in NO WAY at physiological dose... not at normal dose. We all know we had excess cortisol. So why do they give us 20/10? This huge drop causes patients to live in a dangerous state of adrenal insufficiency. I know that many patients come online seeking help and relief, and the advice we tell them is the same--
Too much cortisol post op won't hurt you more than Cushing's already did (remember all that waiting?!), but too little post op can kill you. So how are endos so confident what is too little? They need to listen to us and see how we react, and if it is extremely difficult, we need to take more. 30/10 instead of 20/10. When my doc sent me home on 20/10, it took me going up to 40/20 mg hc a day to stabilize. Then I would wean by 5 mg a week then 2.5 mg when I got below 35 mg. Yes this makes recovery much longer, but it also means you survive. That's the goal, right? To survive this ordeal? So everyone, please be careful. You know your own bodies and when it comes to recovery from this dreadful disease, there is no one dose fits all solution. Be gentle with yourself, and if you face symptoms of adrenal insufficiency, please do not hesitate to take more. 5 mg hc under your tongue will make the meds enter your bloodstream faster. If you don't feel any lift or relief in 60 minutes, take another 5 mg. If you have more than three symptoms of AI, start with 20 mg and get fixed up faster. You are in control, and you will learn what you need. Yes it takes a long time to recover from the damage of this disease, but you can make sure you have enough to lessen the suffering. There is no tough it out, mind over matter to getting off steroids. You cannot will your adrenals and pituitary to wake up after surgery. They will do it when they are good and ready. Please don't force yourself and end up dead. I say this because we have seen it happen. Don't let that be you. Please. All of us want to cross the line and win our race. It's just that our bodies have set the distance, and we have to keep going until the end without ever knowing when the race will end--quite cruel and certainly exhausting, but the goal is to be alive at the end. We Cushies will be cheering you along the entire way.