HypoPit HypoTips: Managing medicine
Life after cure doesn’t mean you stop receiving treatment. For most of us, this is where the hard work of incorporating our newfound medical conditions into our day to day life begins.
In order to remove my brain tumour, the surgeon had to remove my pituitary gland, which means my body does not regulate hormones by itself anymore. This condition is called “hypopituitarism” (see What is meant by “Hypopituitarism”), and means I will be on full hormone replacement for the rest of my life.
Pills, Pills, Pills…
Since my operation, I have been on a cocktail of tablets to make my body function properly. Hydrocortisone, DDAVP and Levothyroxine have always been present, and I have taken these three times a day since 2001. Until I was around 16 years old I had growth hormone injections, and since adolescence I have been on female hormones.
Obviously taking a combination of tablets like this (at one point 5 different medications a day at 4 different times) takes some organisation and preparation, so here’s some advice on managing medicine.
1 – Learn about the medicine you are taking
When you are prescribed medicine, it is a good idea to ask the doctor any questions you may have. I know it can be hard to think of this sort of thing on the spot, so I’ve prepared a list of things you might want to know.
What is the medicine for?
Usually this is clear, but if you are going to be given a few different tablets, make sure you know what each one is for.
Are there any side effects I should know about?
This information is usually on a slip of paper inside the medicine box, but your doctor can tell you what to expect and what to watch out for.
How will I know it is working?
Again, your doctor can advise you on what to expect.
What dosage and when should I take it?
The doctor will usually tell you this anyway, but be sure to write it down before you leave the appointment in case it isn’t clear on the label of your medication.
Will I be able to drive?
It is important to check how the medication will affect your lifestyle, and also how your lifestyle may affect the medication.
Be sure to find out if you need to make any changes before you start taking the medication.
Will it affect / be affected by my current medication?
Can I drink alcohol?
2 – Storing your medication
Different types of medicine need to be stored in different ways, so be sure to find out what is recommended for your specific medication. It is important to keep the prescribed medication separate from other tablets in your household, such as aspirin or hayfever tablets, to reduce the chance of someone else taking it by mistake.
I used to keep my growth hormone injections in a drawer in the fridge, and my tablets stacked in an old ice cream container in a cupboard nearby. More recently, I have set aside a drawer for all my medicine, and I make sure to keep it very organised. It helps to sort it all by which medicine it is, so you can easily see what you are running out of. Generally my tablets have an expiry date more than a year away, so I don’t worry that they will go out of date, but I like to put the ones expiring soonest at the front so they get used up first.
Most importantly, keep the medication out of reach of anyone who may mistakenly consume it, like children or pets.
3 – Prepare your doses in advance
When you have to take a number of tablets at varying times of day, it is useful to use daily pill boxes split into sections. I use the ones with 4 sections, which can be found in most pharmacies, and also discount stores like Poundland. I prefer clear or translucent ones so you can see what’s inside without opening each one up, and as they are quite inexpensive I recommend getting several weeks’ worth to make life easier.
The tablets I take either have to be whole, halved or quartered, so I either break them apart with my fingertips, or use a pill-cutter. Depending on your tablets you may find the pill-cutter quite useful so definitely consider it, but I find it quicker just to snap the pills myself.
Start by laying out all the boxes open on a table or something. Definitely don’t do this around pets or children, as they may knock over the boxes or swallow something they shouldn’t. Next, choose which tablet you wish to start with and distribute it amongst the boxes as needed. I always finish with one type of medication before moving on to the next, so I complete all the days for each tablet, rather than doing all the mornings, then all the afternoons, then all the nights, but it really is up to you which you prefer.
Take care when closing all the boxes as sometimes this can cause the medicine to pop up out of the box and get all jumbled up, and find somewhere sensible to store the medication. Keep it out of reach and sight of children, but in a room or cupboard you use every day so you will be reminded to take your tablets each time you go past.
4 – Always have extra
Growing up, I realised the value of always having more medicine than I thought I would need. We would prepare the medicine boxes at least a month in advance, giving us plenty of warning if we had to order more medicine from the pharmacy. My mum would always have an extra box of medicine in her handbag, and as I grew older and took more responsibility of my medicine, I kept up the practice of carrying more than I’d need.
For example, say you are going away for a week. Rather than take exactly one week, consider taking two weeks. This will ensure you have extra days with you in case you can’t get back when you expected, and doesn’t really take any extra space or weight in your bag.
It is also a good idea to leave prepared boxes of your tablets in places you often go. Have a couple of spares at school, at work, in your car, in your gym bag, at your grandparents’ house. This way you will hopefully never be in a situation where you can’t get to your tablets, and gives you some flexibility (like if you wanted to spend the night at a friend’s house spontaneously).
5 – Keeping track
When you first start taking medicine, it can be hard to remember when to take your medicine, so to make this easier, I recommend using an alarm. When I was younger I had an alarm on my watch, but more recently I use an alarm on my phone for each time I am supposed to take my tablets. This stops you from missing a dose, and you don’t have to keep worrying about it, plus eventually you just remember to have the medicine at that time.
It may also help if you keep a list in your diary or on your phone of the times you are supposed to take your tablets. This way you can tick off the list and keep track of which tablets you’ve had, making it less likely you’ll have the tablets twice by mistake.
I would also recommend keeping a list of which tablets you are supposed to take at each time during the day somewhere on your person. This would be useful if you were in an emergency and needed medical treatment, as the hospital staff would be aware of your medical condition and treat you accordingly.
6 – Choosing your pharmacy
Taking medication for life means getting very familiar with your pharmacy. It is important to find a pharmacy that suits you, as you will be dealing with them for a very long time.
Things to consider when choosing a pharmacy:
- Location: ideally near your home or work so it is easy to get there
- Opening hours: are they open when you will be able to collect your medication?
(if you finish work at 5pm, you want a pharmacy open later or open at the weekend)
- Recommendations: see if your doctor or a friend is able to recommend a local pharmacy
- Repeat prescriptions: it is worth finding out how easy it will be to order a repeat prescription and how quickly you will be able to collect the medication
When I need to order any medicine, I call my pharmacy. They request a repeat prescription directly from my GP, who can then submit it to the pharmacy through the Electronic Prescription Service. This means I don’t have to collect the prescription from the GP myself, and the pharmacy gets the prescription quicker. Usually I am able to collect my medication within a week of calling the pharmacy, but I always make sure I have more than a week left before ordering the medicine in case they miss something off the order or it takes longer than expected.
You can search for pharmacies on NHS Choices, which will show you which pharmacies are near you, the address and phone number, opening hours, any ratings and whether it uses the Electronic Prescription Service.
This is the link to search for pharmacies in your area: http://www.nhs.uk/Service-Search/Pharmacy/LocationSearch/10
7 – Free prescriptions
In the UK, you can get free NHS prescriptions if you:
- are under 16
- are 16-18 and in full-time education
- have a specified medical condition and have a valid medical exemption certificate
To find out if you are eligible for a medical exemption certificate, you can check the list of medical conditions here: http://www.nhsbsa.nhs.uk/1126.aspx
For fellow hypopit patients, “diabetes insipidus and other forms of hypopituitarism” is specifically listed, so you are eligible. I definitely recommend making use of this as the cost of medication quickly adds up. It is also good to know that the medical exemption certificate is still valid for medicine not related to the medical condition entitling you for free prescriptions. For example, I don’t have to pay for my asthma inhalers or for antibiotics if I get an infection.
To apply for a medical exemption certificate ask your GP for an FP92A form. For more information, check here: http://www.nhsbsa.nhs.uk/1638.aspx