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Familial Isolated Pituitary Adenoma (FIPA)
  1. FIPA Patients
  2. Living with pituitary disease

Living with pituitary disease Information & Resources

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:

Driving restrictions

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:

Emergency steroid injections: liquid and powder

Hydrocortisone can be supplied in 2 forms

  • Liquid - Efcortesol
  • Powder - Solu-cortef

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.

Identification Emblems

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).

Free prescriptions

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:

  • Hydrocortisone
  • Thyroxine
  • Desmopressin
  • Testosterone
  • Oestrogen replacement
  • Growth hormone

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.

Pre-payment certificate

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.

Prescriptions charges in the Republic of Ireland

Long-term illness scheme

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

Testosterone Replacement Diary

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 helpline@pituitary.org.uk with the subject heading Replacement Therapy Diary.

Travel tips

Health insurance

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:

Existing medical conditions and medications

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 helpline@pituitary.org.uk or phone 0845 450 0375).

Taking medicines out of the UK

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.

For medications that need to be kept cool

If you have medications that need to be refrigerated, the following are suggestions on how to keep medications cool during travel:

  • Purchase or borrow a small cool bag with two freezer blocks.
  • Before you travel, call your accommodation (hotel, motel, bed and breakfast, etc.) and ask if they have refrigerators in the rooms or, if not, if one can be hired for your room.
  • If they do not have refrigerators, ask if they have a freezer where they can place your freezer blocks on a rota in order that you can keep your cool bag cool.
  • During travel, place your medication into cool bag with both frozen blocks - the blocks should keep cool for around 12 hours.
  • If you need to use the hotel's freezer, on arrival, give them one block labelled with your name. Twelve hours later swap the blocks to ensure you continually have a frozen block to use both day and night in the cool bag.
  • For dire emergency, for example, there is no freezer or refrigerator available, wrap the medication in a cold wet flannel and keep in shade. This option is not recommended for the long term.
  • For long haul flights, you can request dry ice packs from cabin crew (they can refuse this request). Dry ice packs will quickly refreeze your ice blocks. It is important to be very careful while handling these packs.
  • If you ask at your local chemist, they may loan you a 24-hour freeze box free-of-charge. Be aware, they may expect you to return it. These 24-hour freeze boxes are very bulky and you will need to carry it with you.
  • Cabin crews may also refrigerate your medications for you on the aircraft (again, they can refuse this request). Be sure it is properly labelled and be certain to retrieve your medications before leaving the plane!
  • There are growth hormone products that are available that do not need refrigeration - just kept cool - very useful for holidays!

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.

Travelling between time zones

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.

Other Ideas for Travel

  • You may wish to wear a medication identification tag or bracelet which you can show to airline or airport security staff to ease your route through check-in and security.
  • Take an extra two weeks supply of medication. This is particularly important for those on Hydrocortisone. Or have two supplies of medications: one you carry in your hand luggage; another that can be checked into the airplane's hold. This will ensure you have enough medication even if your hand luggage is mislaid or your luggage is lost.
  • Regardless of your method of travel (air, train, car), you may wish to bring drinks and snacks with you as often you can't control when you'll find refreshments.
  • Find out beforehand if you need to have a way to collect sharps during your travel for disposal when you arrive home. You may need to arrange travel sharps containers or bags. Talk to your local clinic, chemist or council before you travel.
  • Be sure to have enough medication on return home - you may be prepared for while you are away but you don't want to run out when you get home!
  • Upon return travel, if you are involuntarily removed from a flight you may wish to explain to airline staff that you use life-critical medications and need to return as soon as possible if your stocks are low. They will generally be very co-operative about getting you back on your scheduled flight.

 

Diabetes Insipidus Toilet Facilities card

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.

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