Diagnosed with a rare pituitary condition 30 years ago, Steve Harris is determined to live his life to the full. So, what does that entail? Planning!
In this article, Steve gives his 6 top tips for managing your condition, including:
Preparing for a holiday
Organising your medications
Getting the most out of your hospital appointments
Read his advice in the post below.
Many years ago, I was diagnosed with a rare condition with a tumour on my pituitary gland. Luckily, there was medical treatment available. I had surgery and radiotherapy to treat a tumour causing the over-production of growth hormone (GH). Thankfully, the treatment was successful, and my condition is now in remission.
Related: I Am Not My Condition – Acromegaly and Me
How radiotherapy affected my other pituitary hormones
Despite remission, treatment affected the production of my other pituitary hormones. I’m now deficient in adrenocorticotropic hormone (ACTH), which stimulates the production of cortisol. Cortisol is an essential hormone that helps regulate glucose, protein and fat metabolism, control inflammation in the body and maintain blood pressure.
I’m also low in something called thyroxine, which, while secreted by the thyroid gland, needs the pituitary gland to produce the hormone. Low thyroxine in adults can cause issues with metabolism, leading to weight gain, fatigue, and muscle stiffness.
Finally, I’m now lacking in testosterone and, ironically, growth hormone. Depleted testosterone in adult men can also happen as men age. Often it can lead to mood disturbances, loss of hair, reduced muscle mass.
Growth hormone, otherwise known as somatotropin or human growth hormone (HMH), contributes to keeping up muscle and bone mass and general energy levels.
I now have to take medication regularly to replace these missing hormones. Although this article won't look at my medications in-depth, it explores how I cope with medication issues and hospital clinic visits.
Related: 3 Tips to Come to Terms with a Rare Diagnosis
3 tips to help medically manage your condition
1. Keep track of your medication
People who require regular medication can often be taking several tablets each day. It's vital to organise your tablet-taking so you don’t miss a dose. If you take several different tablets daily, it can be difficult to remember what you’ve taken and if you need to take them at certain times of the day.
It's also fairly common for some medication to be taken at specific times of the day. This is where an alert system on your phone or watch is vital. When you're busy, it's so easy to forget your dose by a few hours, or even until the next day. Set daily reminders on your phone or watch to remind you to take your medicines. There are even apps to help remind you.
That beeping noise may be irritating, but it’s much better than accidentally skipping a dose!
2. Prepare before travelling abroad with medication
Travelling abroad can present problems for those of us who have to carry a lot of medication – especially if you use injections.
Before you book a (much-deserved) holiday abroad, please get in touch with your medical team. Your team will know what's best for you, even if it's an added burden to your pre-holiday plans.
Your medical team can advise you on the type of travel suitable for you. For example, with some medical conditions, you may be asked not to fly.
Your team will also know what restrictions there are when it comes to taking medications on holiday. Unfortunately, you can’t get some medicines in certain countries or take them over the border.
Your doctors may be able to offer you alternative medication in that instance. Likewise, they can be able to give you any letters or certificates you may need in case of an emergency.
Related: 7 Tips for Travelling When Caring for Someone
Meanwhile, here are a few things to remember before packing your case:
1. Needles and syringes will be confiscated if you can’t prove your medical need to carry them. Obtain a letter from your physician or consultant. Declare your needles at check-in and security.
2. Before travelling, contact the airline for information on their (and the airport's) policies regarding medication. Rules can easily change between companies and airports!
3. Keep your medication in its original packaging as issued by the pharmacist. The letter from your physician and personal health record card giving details of the drugs prescribed will help you if challenged by security.
4. Take enough medication to cover your stay. If possible, it's a good idea to take extra with you in case of any illness abroad or a delayed return.
5. Split your medication between your hand luggage and suitcase. This will ensure you have enough during the flight. If your luggage gets lost, you’ll have enough medication while you make some emergency calls.
3. Tell friends and family what to do in a medical emergency
Family, friends and work colleagues should know about your illness and what they need to do if you need emergency help.
If you need emergency medication, such as an auto-injectable device, someone other than you should know where to access it. Preferably, at least one person accompanying you will know how to use it. It’s better to be over than underprepared!
Likewise, it’s vital to carry information about your condition and medications so emergency healthcare workers know how to treat you.
Alert cards are available for many illnesses, and these should be carried with you at all times.
It's advisable to wear some form of medical alert jewellery which provides valuable information for emergency staff.
If you have a rare condition, like mine, remember many healthcare workers will know next to nothing about your situation or what the medication is to treat it. The more information you can provide, the more you're helping emergency teams find the correct person to help you.
As I mentioned previously, the treatment I received for my condition means I no longer produce any cortisol. As a result, I must take daily tablets, and I can get very unwell in a short time without them. This is usually known as an Addisonian or adrenal crisis. Symptoms of an Addisonian crisis include:
- Pain in my lower back or legs
- Vomiting and diarrhoea
- Abdominal pain
- Reduced consciousness
If I show these symptoms, I need a special injection as soon as possible. I carry an injection kit, and my friends and family know what to do if I need help. Some of them have been trained to administer injections.
The lack of cortisol also means I have to take extra measures if I contract another illness or encounter a stressful situation. The so-called "sick day rules" explain how and when to increase my dose of tablets to help my system cope in such circumstances.
That covers the medical management side of my condition – the other side is annual visits to the hospital endocrine clinic.
Related: Living with Acromegaly – My Condition in Snapshots
Getting the most out of hospital visits
In my experience, patients with a rare or chronic condition will have many visits to the hospital. Although my primary pituitary illness is now in remission, I still have an annual check-up at the hospital endocrine clinic.
Little did I think that, thirty years after surgery and radiotherapy, I would still be attending the hospital clinic! Over the years, I’ve learnt how to make sure I get the most out of these visits. Here are my top three tips.
Related: Living with Acromegaly – My Condition in Snapshots
1. Send over any blood test forms in advance
A few weeks before my annual visit, I get the clinic to send me the blood test forms. This means the clinic will have received the results before my actual visit. My specialist will assess the outcome, and I’ll be informed of any changes since my last visit.
Every two or three years, I’ll also have an MRI scan to check for signs of tumour regrowth.
2. Write a list of questions for your specialist
Patients need to write a list of questions to ask their specialist – it is so easy to forget to ask things in a clinic environment. And don’t forget to write down the answers! I’ve often forgotten what the specialist said to me by the time I reach home!
My general physician knows about my condition and how it can interact with other illnesses. However, he doesn't get involved in the medical management – that is done by my hospital specialist.
Related: 5 Top Tips to Prepare for Your Clinic Appointment
3. Have an open conversation with your pharmacist
Finally, I think it is crucial to communicate properly with your pharmacist.
A good pharmacist will be aware of your condition and can offer advice about the medications you may be prescribed for other illnesses.
So, keep your patience if you're waiting for a few minutes! Pharmacists are often very busy, and the system is stretched. So be sure to treat them with the same respect you would with any other healthcare professional.
Managing a rare condition - or any long-term illness - requires planning, planning, and more planning.
If you keep on top of managing your condition, you don't have to put your life on hold. Good mental health is essential, so seeing friends and taking holidays should be high on your list of "must-dos".
Sometimes it’s difficult to keep track of all the things we need to remember – especially when we are tired. But it is our responsibility to be active participants in our own healthcare. Follow these tips the best you can, and lead the life you want. It's just what we deserve!
NPS-IE-NP-00323 November 2021