Advice on getting a pituitary diagnosis

You might have been suffering from unexplained symptoms for some time, which you believe might be linked to a pituitary problem. Your GP will probably be the first point of contact, but in some cases your optician, dentist or other clinician may have been consulted and referred you to your GP for further tests.

As pituitary conditions are considered quite rare, your GP may not have come across another patient in their practice and may investigate other more common conditions (for example: diabetes mellitus, migraine, and menopause) before considering pituitary. You might have visited your GP already, on a number of occasions, and perhaps have been told that your symptoms are, or could be, due to more common illnesses. The suggestions given below could be helpful for you when approaching your GP.

General suggestions when seeking a diagnosis

  • Write down a list of your symptoms as they present, and dates if possible that they began, and take notes of the outcome of your visit.
  • If you can draw a simple graph, showing months down one side and symptoms along the bottom, it gives an obvious and speedy indication to your doctor of how often and when the symptoms occur.
  • Take photos of how you were/looked before you became ill, to show the doctor of physical effects and changes as a comparison.
  • Take a friend or family member with you to your consultations, so they can give the doctor any information you may not recall. Also, they may remember more of what the doctor says and could take notes. 
  • Make a list of any medicines you take including alternative therapies and vitamins.
  • List any family illnesses or conditions e.g., TB, heart disease, diabetes, etc.
  • Have an eye test with your local optician.
  • Be positive about your visit. The GP is there to help you and good communication is essential. If you are dissatisfied, it may be possible for you to see another GP within your practice.

Suggested questions to ask your GP

  • As my periods have stopped (and I’m not pregnant / breastfeeding / menopausal) could you test my prolactin level? Mention also if you have any loss of libido or crusting and/or milk production from your nipples.
  • I’m feeling cold, tired and gaining weight, even though I’m not eating more, could you test my thyroid levels?
  • I have flu-like symptoms, sometimes suffer a ‘hangover’ type feeling and suffer minor infections regularly; is this related to my cortisol production and could you test my cortisol?
  • My joints are aching, my family have noticed an increase in the size of my hands and feet and I have facial changes; could I possibly have excess growth hormone? (It is a good idea to show your GP a series of photographs of yourself over a period of years, if you feel your features have altered considerably.)
  • The headaches I experience are not of the type I’ve ever had before. I don’t believe they are migraine, as they feel like…(explain where the pain is, how long it lasts, and if it makes you feel, or be, sick]).
  • I am passing urine every (however many) minutes, and cannot quench my thirst that is present 24 hours. My mouth is parched please look at my tongue/lips. I don’t have a water drinking habit. If you test for Diabetes Mellitus and this is clear, could you consider Diabetes Insipidus?
  • I realise that I am consulting you on a regular basis and would understand if you felt my symptoms were ‘in my mind’, as they are varied and could be matched to many common conditions. I’m struggling with daily life as I’m feeling so unwell and I would appreciate some pituitary hormone testing, as these tests haven’t been carried out to investigate the cause of my problems.
  • My vision is unusual I’m having difficulty seeing out of the sides of my eyes. I don’t wear glasses, nor have optical checks, so should I see an optician and report back to you?
  • I’m putting on weight, have excessive facial hair, have a fatty hump at the top of my back, have stretch marks and suffer awful mood swings could this be Cushing’s, and could this be checked with a cortisol blood test?

Referral to an endocrinologist (a consultant who specialises in hormones) 

If your GP suspects a pituitary problem, he/she should refer you to an endocrinologist for further investigations. It is very important and we strongly recommend that you be referred to an endocrinologist who specialises in pituitary conditions.

At your first appointment with an endocrinologist, it is usual for the following things to happen:

  • A full medical history will be taken - lots of general health questions e.g. when you experienced your symptoms, how they felt, and your family history of general health.
  • You will probably be given a physical examination - blood pressure, pulse, chest and heart checked. The doctor will look into the back of your eyes and may check your fields of vision (how far you can see to each side without moving the eye).
  • Blood tests are taken to test relevant hormone levels (this is quick and quite painless). The results usually take 2-3 weeks, a copy of these should be given to your GP for his files. 
  • The endocrinologist may want you to have a scan of the pituitary gland using an MRI or CT scanner - the waiting list can be more than several weeks/months in some hospitals. Having a scan is painless and will not harm you. An MRI offers a much clearer picture and involves being in a more confined space than a CT scanner. If you are concerned about this or suffer from claustrophobia, please let your GP know as he/she can offer a relaxant which does help.
  • You can take along your partner, relative or friend with you to this, (and any future) appointments. It is also a good idea to jot down (and take with you) notes of symptoms you wish to discuss in case you forget during the consultation.

Please note: Almost all pituitary tumours are benign - they are not cancer - however, many still require treatment. It is highly unlikely that any visual problems will deteriorate further, and it is more likely for your sight to improve following treatment.