Anyone who has a rare medical condition will tell you, there’s no rule book to ‘living well.’ Living well can mean different things for different people, and what ‘living well’ means after a rare diagnosis, may be very different to what it meant before. We know pituitary conditions can drastically change many areas of life. If you’ve been diagnosed with a pituitary condition and are struggling with the changes this brings, we’re here for you. Our resources and support services can help you live well with a pituitary condition, whatever this may mean for you.
Whilst everyone’s experiences with pituitary conditions are different, it can be helpful to learn from each other and our shared experiences. To celebrate Rare Disease Day 2026, we held a patient panel event and heard from three members of our Lived Experience Committee, David, Aleha, and Roz. Our patient panel shared their tips for how they live well with a pituitary condition.
The session started with the panel giving a background to their conditions and involvement in The Pituitary Foundation. The speakers have over 50 years of collective experience living with pituitary conditions!
Challenges our panel face
During this part of the talk, the panel each discussed the biggest challenges they have faced in living with a pituitary condition.
Accepting a lack of control
One panel member explained that their biggest challenge is the lack of control they feel over their condition, energy levels, and general health. Days of feeling significantly less well are unpredictable and can be frustrating to live with. To help manage this, they’ve identified and implemented parts of the day where they can take complete control. For them, this means having a deliberately slow and peaceful morning, to prioritise self-care and find a calm start to the day.
If lack of control is something you struggle with, you may want to carve out times in your day when you can find a sense of control. This could be taking an hour for yourself over lunch, to read or go for a quiet walk. Alternatively, you may like to dedicate time to watching a favourite show or movie in the evening.
Recognising and responding to emergency situations
For another panel member, who lives with adrenal insufficiency, the main struggle has been understanding the significance of adrenal crisis and accepting when the situation is an emergency. Their personality has been to play down the situation, which has often made the crisis worse. In order to address this, they’ve made sure the people around them (their partner/family/friends) are aware of the severity of adrenal crisis, and are prepared to support them. This is important to remember when going on trips – are you travelling with people who will recognise a crisis and help you administer an injection?
If you struggle to recognise the signs of adrenal crisis, our information on adrenal crisis and sick day rules can help. Our Adrenal Insufficiency Action Plan is also a great resource to tell others about your condition, what medication you need and what to do if you have an adrenal crisis.
Download our Adrenal Insufficiency Action Plan
Download our Action Plan for free, or order a printed version to be posted to you.
This action plan is a useful resource for anyone with adrenal insufficiency or Addison’s disease, to record essential medical info and share with others to make them aware of your condition.
Download for free or orderCompounding challenges
For the final panel member, who lives with acromegaly, the biggest challenge has been the multifaceted nature of pituitary conditions; it is often one thing after another and so on. With acromegaly, it’s common to also have issues with joints and fatigue. These additional challenges can be hard to deal with, and can get in the way of daily life. Being involved in different areas of the pituitary community, via forums and attending events, and meeting others who can relate, has been helpful with this.
If you are finding it difficult to manage all the different challenges your condition may bring, speaking to others who understand can really help. The Pituitary Foundation runs online and in-person support groups, educational events and regional get-togethers, to bring together people from the UK who are affected by pituitary conditions. You can find out more and get involved through our events page.
Fatigue
Fatigue is a very common symptom experienced by people living with pituitary conditions. Both pituitary conditions themselves and their treatment can cause fatigue. For some, it’s a symptom they struggle with every day, and for others, it’s something that comes out of the blue every few weeks. It can be really tricky to find out what may be causing fatigue for you, but there are things you can try that may help.
All of our panel members reported experiencing fatigue. To help manage this, our panel talked about recognising when the fatigue is overwhelming, and planning around this. Can you move back any commitments to in a few days’ time, where they’ll be more manageable? In order to do this, you need to accept the situation and scale of fatigue, which is a challenge in itself. Trying to communicate the fatigue with family members, colleagues, and friends will help people around you set their expectations of what you can do.
Tips from our event attendees:
- Using the ‘spoon theory’ can be a really effective way to talk about fatigue with people who don’t have lived experience of fatigue
- One attendee has breakfast in bed every morning in order to give her first dose of hydrocortisone time to kick in
- Another attendee has got into the routine of getting up early in the morning to make a coffee for their partner, and wanting to provide this act of service motivates them to get up on harder days
Pituitary surgery
Surgery as an experience can be challenging for different reasons. For routine and planned operations, the process is generally well-planned, and the procedure will be explained clearly. During this event, the panel talked about emergency surgery, which can be more stressful. In these situations, signing a consent form while feeling very unwell can be a scary experience.
Post-surgery, there can be lots of unexpected outcomes. One panel member discussed feeling really emotional and waking up in the night crying, unsure why. This lasted for a few weeks after surgery and was a shock to the system.
Surgery can also make you feel extremely fatigued, which is normal. You should expect to not be able to return to your normal activities for at least a few weeks, if not longer, after surgery. It’s also important to remember that everyone’s experiences of surgery and recovery are different, and there is no set rule for how long it takes to recover. Being gentle and kind to yourself during recovery is important, as your body has been through something significant. You can find more information on surgery here.
Managing lots of medications for pituitary conditions
Our panel members take a variety of medications, which can be complex to manage. Some medications are simpler, as they can be taken first thing in the morning, or last thing before bed. Other medications are tricky as they happen in the middle of the day, when you might be out and about.
To help with remembering to take these, one speaker recommended using alarms (via a phone/watch/bracelet). They also recommend having a follow up alarm 15 minutes later, in case you miss the first one!
Another speaker associated different medications with different aspects of her daily routine. As they take a bus home at the same time every day, they have built the rhythm of taking a medicine while on the bus home.
It’s also important to confirm what medicines need to taken with food, and which needs to be taken on an empty stomach. To confirm this, the speakers recommend speaking to an endocrine nurse about the various medications you’re taking and getting a plan together for each one.
If you are taking multiple hormone replacement medications, it is also important to know if they interact with each other, and how. You can read more about this here.
Tips from our event attendees:
- One attendee recommends keeping medications in a small plastic bag, so if any blister packs fall out, you’ll be able to find them
- Another attendee has a folder ready which explains their different prescriptions and medications, in case they are taken into hospital and needs to explain this to a health care professional
Travelling with a pituitary condition
Travel can be a complex process for people with pituitary conditions. For one of our panel members, the main issue arises around moving between different time zones, and how this affects the timings for their medications. Our panellist finds it helpful to speak to an endocrine nurse or endocrine team to put together a clear timetable for when to take medications while abroad, and to transition doses into the new time zone. Our Nurse Endocrine Helpline can help you with this.
Another top tip is to be conscious of where your medication is while travelling. If you are putting a bag in the hold of an aeroplane or a baggage rack on a train, it might be more sensible to keep your medications in your hand luggage, in case your other bag goes missing. It can also be helpful to take double quantities of your medication, and pack these in separate bags/pockets.
Tips from our event attendees:
- Your endocrine team will be able to write a letter explaining what medications you take for you to show airport security. This will also be able to explain any specific requirements for the medication, for example, that it needs an ice pack while on a flight.
- Lots of airlines and train companies internationally recognise the hidden disability sunflower lanyards. These can help staff be aware you may need extra support at stations or airports or might need a seat rather than standing in a queue.
- One attendee recently travelled with work, and found it really helpful to have a conversation with their colleagues about their condition, so they could feel more prepared in case something went wrong.
- Another attendee always checks where the nearest hospital is to their accommodation is when travelling.
Returning home from hospital stays
After being discharged from hospital, it can be difficult to adjust when returning home. When you’re in the hospital, medications will be administered by IV, and oral doses will be managed by the team caring for you. When you return home, you will need to manage your medications yourself. This can take a while for you to feel familiar with. You may find that your other routines, like eating and sleeping, are out of sync while you adjust to new medication routines.
Our panel noted that it is important to acknowledge how difficult this can be. There can be lots of changes to adjust to after coming home from hospital, and it may take time to feel normal again. For our panel member, it was helpful to have a support network in place who could help throughout the adjustment process.
If you are able to, having your support network ready to help you can make a big difference at times like this. Asking friends, family and neighbours to help out with food, laundry and driving you to and from the hospital, can all make a big difference. Being specific with what help you may need can make it easier for loved ones to support you.
Tips from our event attendees:
- Your endocrine team will be able to provide you with instructions for returning home after a hospital stay, which will include a dosing plan when swapping from IV to oral steroids.
FAQs from our attendees
How can you manage mixing the powder and liquid vials in an adrenal crisis?
Your local endocrine team will be able to provide steroid education, but you may need to ask for this. You can also ask that carers/relatives/family members are given this training too. If you live alone, do you have a neighbour who might be able to assist in a crisis?
It can feel scary to think of having to mix powdered hydrocortisone in an adrenal crisis, but the best thing you can do is prepare yourself with the knowledge of how to do it, and when. Watch our video on this, to know what to do.
Since the move away from red-flagging, it’s important to register your address as a high-priority with your local ambulance service. You can find out more about this here. Ambulances carry hydrocortisone kits, which will be administered in a crisis.
What should you be aware of when travelling with pituitary apoplexy? Are headaches a normal symptom?
Yes, headaches are experienced by lots of people with pituitary apoplexy. While travelling, it’s important to think about timeframes, with most NHS trusts suggesting waiting 6 weeks before travelling. It’s important to speak to your own endocrine team before flying, and confirm this is safe to do, and that enough time has passed.
Do you have any tips to manage pituitary conditions and weight gain?
This is a common issue, and you should speak to your endocrinologist about the options available. You could consider a diet that is high in protein and fibre, which helps you feel fuller for longer. Steroids can cause your blood sugar to spike, so looking at reducing sugar intake when taking hydrocortisone is important.
It’s also helpful to keep a record of your weight, and share this with your endocrine team, so they can be aware of any trends or significant changes.
Exercise can be helpful for lots of people here. One panellist started a sport to stay motivated and tries to maintain an exercise routine in her day-to-day life.
Tips from the chat:
- If you don’t have the energy to leave the house for exercise, would an at home walking pad be an option instead?
- For those with AI, timing your exercise around hydrocortisone dosing can help with energy levels. For example, planning a gym trip for 30 mins after an afternoon dose
Read more about pituitary conditions and weight management here.
