Many patients with a pituitary disorder will require life-long drug treatment and monitoring and their condition will, potentially, impact on many aspects of their life. There is a lot of information available in the links provided below, especially from the Pituitary Foundation site which will help minimise the day-to-day problems of living with pituitary disease.
The Pituitary Foundation site provides information on the following areas:
You have a legal obligation to notify the Driver and Vehicle Licensing Agency (DVLA) of a condition that lasts longer than three months and may affect your fitness to drive. Conditions such as Pituitary tumour should be notified. More information about driving and medical conditions can be found in the Medical Rules section of the DVLA website.
Many patients with pituitary conditions will find there is no restriction, but you should check with your GP. The only conditions likely to affect you are problems with your eyesight.
Transsphenoidal surgery does not in itself limit your entitlement to drive. Your doctor or specialist will give you full advice.
For Drivers Enquiries, contact the DVLA:
Hydrocortisone can be supplied in 2 forms
If you need to inject extra hydrocortisone in an emergency your doctor (either in hospital or your GP) will have prescribed either of these forms that you must keep ready for use. The liquid is very easy and convenient but it is recommended that it is stored in a fridge, or, if out of the fridge, must be kept at 25 degrees or less. The powder can be more convenient when travelling as it is more easily transportable and does not need controlled temperatures. It also has a longer shelf life meaning fewer visits to your doctor for re-prescriptions.
In the event of a medical emergency or an accident, identification emblems can provide essential information about hidden medical conditions. A number of companies provide internationally-recognised identification emblems and medical alert jewellery. Some companies also provide secure storage of your condition and medication so that it can be accessed by healthcare personnel in the event of an emergency.
Patients on Hydrocortisone replacement should also carry a Blue Steroid Card (available from your GP or pharmacy).
You can get free NHS prescriptions if you suffer from a number of medical conditions, including Diabetes Insipidus and other forms of hypopituitarism i.e. free prescriptions are available for patients suffering from pituitary disorders who require at least one of the following drugs:
You will need a Prescription Charge Exemption Certificate (FP92) which you can get from your Health Authority. To obtain the certificate you must complete form FP92A (EC92A in Scotland) which is available from your doctor, hospital or pharmacist. The form (which will need to be signed by your doctor) tells you what to do. These certificates only last for a finite period after which they must be renewed. Your health authority may automatically send out an application for renewal.
Unfortunately, Bromocriptine, cabergoline and quinagolide are not exempt and you will have to pay for these unless you qualify for free prescriptions. Also, testosterone replacement therapy is not exempt if you do not suffer from hypopituitarism.
Information about free prescriptions and the full list of medical conditions which qualify for exemption from prescription charges can be found in leaflet HC11 (click here), available from pharmacies, some doctors' surgeries and main Post Offices. Information can also be found online here
If you are not sure whether you are entitled to free prescriptions, you must pay for your prescription and ask for a NHS receipt (form FP57 in England, EC57 in Scotland) when you pay; you can't get one at a later date. This form tells you how to get your money back.
If you are not entitled to free prescriptions and you think you will have to pay for more than 5 items in 4 months or more than 14 items in 12 months, you may find it cheaper to buy a pre-payment certificate. More information can be found online here.
If you are a patient in the Republic of Ireland and you suffer from certain long-term medical conditions, including diabetes insipidus, you are entitled to get the drugs and medicines for the treatment of that illness free of charge. More information can be obtained from your local Health Board or online at http://www.citizensinformation.ie/categories
Ardana Bioscience developed a Testosterone Replacement Diary to help identify any needs or problems regarding testosterone replacement therapy during consultations with doctors or specialist nurses and they generously sent a number of the diaries to the Pituitary Foundation.
The Diary is no longer available from Ardana but, if you would like a Diary, please email the Foundation at email@example.com with the subject heading Replacement Therapy Diary.
It's important to get adequate insurance cover before you travel. You'll need to find insurance that covers pre-existing conditions. Some ideas for you to try:
It's a good idea to keep a written record of any medical conditions affecting you and a list of all the medications you are taking (both proper and trade names). Most importantly, ask your GP or consultant to write a letter describing your condition and the treatments you are taking. You might also find it useful to carry a repeat prescription script with you. Another good idea, complete and carry the Pituitary Foundation's Patient Care Card (for a copy, contact us at firstname.lastname@example.org or phone 0845 450 0375).
If you want to take any sort of medicine with you - either prescribed or bought from a pharmacist - find out if there are any restrictions on taking it in and out of the UK or the country you are visiting. This is particularly important for patients on Growth hormone (GH). Ask the relevant Embassy or High Commission or telephone the Home Office for advice (0207 035 4848).
Always carry medicines in a correctly labelled container, as issued by the pharmacist. The letter from your doctor, repeat prescription script and personal health record card giving details of the drug prescribed will help you in case you need it to get you through Customs. For further useful information, please visit the Directgov web site.
If you have medications that need to be refrigerated, the following are suggestions on how to keep medications cool during travel:
It is recommended that you find out before you travel what options are available to you.
If you frequently travel by car, you may wish to invest in one of the very small refrigerators that are now widely available and are reasonably priced.
Jet lag can be very hard for the pituitary traveller! This could be made worse if you are travelling between time zones and you don't have a proper plan to reconfigure your medication timetable. It is a good idea to consult your GP or Endocrinologist for advice on drawing up a timetable of when medication should be taken.
The DI Toilet Facilities Card is to help Diabetes Insipidus patients gain urgent access to a toilet in public places, such as shops, if public conveniences are not easily available. The card explains to shop staff what DI is and why a patient may want urgent access to a toilet.
The wording on the reverse of these cards is as follows:
Due to a disorder called Diabetes Insipidus, which prevents my kidneys from retaining water, I need to use a toilet urgently at times. Would you kindly allow me to use the nearest loo? DI is caused by a hormonal deficiency and is not contagious.