Heather tells us what’s helped her and her partner to manage steroid replacement therapy
Being diagnosed with Sheehan’s Syndrome, hypopituitarism or any other condition that requires steroid replacement therapy is a lot to take in. There are so many questions that come up and lifestyle changes to be made. I personally felt overwhelmed with the information, who to turn to and how to stay on top of all of the new medication my body now relied on. Below are some tips and tools I’ve learned and picked up along the way that have helped me in this journey. My hope is that they help to save you time energy and effort in navigating this path yourself. I am not a doctor, so please don’t take this as medical advice and make sure to confirm with your physician or endocrinologist what makes the most sense for your specific situation. If there’s anything I’ve learned throughout this experience, it’s that you need to advocate for yourself. Unfortunately medical professionals as much as they want to help may not think of everything that would be beneficial for you, so do your research and come prepared to each appointment armed with questions and ideas to run by them.
Find support. While Sheehan’s in particular and pituitary issues in general are rare, there are several support groups out there including the Maternal Pituitary Support Group. Connecting with people who face similar challenges as you can be as reassuring as it is helpful. You’ll have people that can relate to you in a way that no one else can, as well as access to information sharing that can help you to fast track your way to the information you need.
Steroid dosing & tests to understand how much you need and how frequently:
A 24 hr urine test will help you understand whether your total steroid replacement amount is sufficient or if you are over or under where you need to be.
A cortisol day curve test (saliva samples at timed intervals while on your normal steroid schedule) will help determine how quickly your body is metabolizing the steroids you’re taking and whether they are timed at the proper intervals or if annulments need to be made.
Consider exploring circadian rhythm dosing. Some endocrinologists recommend two doses per day - a morning and afternoon dose. That may work for your body, however steroids typically stay in your system for 4-6 hrs and some specialists suggest having a small amount of steroids before bedtime actually helps your body. The circadian rhythm dosing mimics your body’s natural cortisol curve as best as possible via oral steroids.
Know that there is an option for a steroid pump that can automatically administer steroids intravenously without having to take medication orally. You’ll have to work with an endocrinologist who is familiar with this and can advise on whether it’s right for you.
How do you stay on top of all of your medications? A few things that have helped me:
If you have an iPhone, the medications in the health app allow you to set up critical alarms that will remind you when it’s time to take your medication. You can also log if / when you took it for reviewing later or sharing with your doctor. It syncs with your Apple Watch if you have one as well and will sound a follow up alarm if you didn’t log it during the originally scheduled time. This has been hugely helpful for me when I’m busy with my son or in the middle of a work meeting or something else where I can’t automatically pause and take the medication in that moment. Alternatively, you can schedule alarms into your phone to remind you when your medications need to be taken.
Consider a pill carrying necklace for on the go. This was an incredible tip my friend gave me about having a necklace that can hold a few essential meds in case you are out and about and don’t have your medications right on hand. Below are two links to options I’ve seen that fit different styles:
Steroid bracelet: this was something none of my doctors mentioned or recommended but I came across in my own research and when I pressed them on it, they agreed it would be a good idea. Because it’s something I wear every day, I wanted something I liked. I came across this website that has lots of options to fit many styles and budgets.
If you’re able to swing this financially and it fits within your lifestyle, there are medical alert dogs that can be trained to sense when your cortisol levels are too low and help you understand if you need to take more medication.
When it comes to your partner, have proactive communications to put them in a position for advocating and supporting you when needed. My specific recommendations are:
Familiarize yourselves with the symptoms of adrenal crisis so they can identify and help you if you’re not in a position to help yourself.
Make sure they know where your emergency steroid shot is located and how to administer it if needed.
If you are doing blood work that requires fasting and abstaining from your meds, work with your partner to have their support - especially if you have young children that may require your support in the middle of the night. Getting up to care for kids in the middle of the night is taxing on your already delicate system and you’ll need the support for any middle of the night needs the kids might have.
This list is certainly not exhaustive, but it is a collection of things I’ve learned along the way that I wish I knew / had easier access to discovering. I wish you the best along your journey. Know that you are not alone and there are some wonderful resources and doctors who are available to support you along the way. Advocate for yourself and know that no one knows your body as well as you do.