Patients View of Some of the Tests and Treatment

Initial Diagnostic Tests

• The patient may have no idea what is being investigated or may think the test is for a different condition. As a consequence, the experience may be rather a puzzle. What's being done and why?

• The tests will depend on the condition being investigated.

"I remember having to drink a pretty disgusting sweet drink; somehow it seemed a desperate act for a diabetic!"

• MRI scans can be a traumatic experience for some.

"Whilst I didn't find the Xray, bone density scan, and blood tests a problem, the MRI scan was altogether something different and left me giddy, head pounding, and totally confused. Being clamped to the unit and given an alarm button to press in case I wanted to get out quick was daunting and claustrophobic enough, but I was not preparedfor the noise of the equipment. I have always had very sensitive hearing, but the noise of the MRI scanner in operation nearly blew my mind. A subsequent MRI scan was a vast improvement. No change to equipment, but much more detail supplied by the nurse at every point of the procedure. The offer of ear plugs was much appreciated, cutting down the noise to a far more comfortable level."

Initial Treatment

• With good preparation the surgery is usually OK (even for the person who has had three!), but the thought of someone inside your head is an odd one.

"I was well preparedfor the operation, so my apprehension level was nothing above normal. The op went well."

"What they don't tell you about is the removal of the nose plugs. "Painful" seems an inadequate description."

• Radiotherapy can be more traumatic. It is a daunting prospect knowing the beams will be so near your brain, eyes, and ears. As radiotherapy is closely associated with cancer treatment, other people may assume you have cancer, even though you deny it. The extended treatment time becomes very tiring, especially with a long journey, and can cause problems at work.

"Although not painful, only making me feel rather tired, it was the treatment I have found most difficult. I just didn't like the thought of the beams going into my head, but that's just me. Other people I have spoken to have not felt that way."

Ongoing Tests

• Some tests (e.g., growth-hormone [GH] day curves) involve considerable time at the hospital and can be very tiring, especially if a long journey is involved.

• When blood is to be drawn, finding a good vein when it is elusive is a horrible experience, both for the patient and the person trying to get samples. Being cold and tired from early fasting and a long journey does not help matters. Heated sheepskin blankets are wonderful. Needless to say, people who have needle phobias call for special care.

• You need to be feeling well for the concentration required by visual fields tests. I had one when my blood sugar levels were low and the results were appalling.

• Some tests are unpleasant (e.g., water deprivation tests and insulin tolerance tests).

"The worst test is an ITT. I dread it so much that I try very hard to talk myself out of it with the specialist nurses. (To me it feels like how it might be when one is dying.) I wish I could evade the tests and carry on with my life as normal."

"I was initially confused about the purpose of the ITT. The mention of the word insulin immediately made me think of diabetes mellitus and then there was confusion about whether it was being carried out to test for cortisol or GH. The first insulin tolerance test was pretty much harmless. After finishing it I went on to complete half a day plus of work. The second was very different and as a result of the food and several bottles of lucozade not raising my blood sugar levels I needed iv glucose, after which I went into shock. The test started at 9 am, I left hospital after 12 pm (they had wanted to keep me in longer,) and I was still feeling ill at 5 pm."

Ongoing Treatment

• Injections are employed for many conditions, some self-administered, some needing medical expertise.

"The only problem I've had [with daily injections] was during a period when the injections got so painful that I was unable to continue for several days."

• Several injections are very expensive and require a special technique. If the administrator is not practiced or confident their nervousness may affect the patient.

• Some of the oil-based injections can be very uncomfortable.

• Implants and patches, such as those used for testosterone replacement, involve a medical procedure—more journeys and time off work. The wound can be uncomfortable and the area badly bruised.

• Taking tablet medication seems inevitable, and some foresight and organization are needed to make sure you have enough in stock. Remembering to take them can be a problem, especially when you have a change of routine.

• Changes in routine may upset other things too.

"I commenced treatment (metered nasal spray [Desmopressin]) on leaving hospital after the operation, and it took many months to get used to the treatment. I found that the dose I was initially advised to take was too much so I reduced it down and down again until I was taking none, but this meant a return to waking during the night. I then increased the dose gradually and am now taking the dose that was prescribed at the beginning and this has been stable for a number of years. However, my reaction to this dose can be erratic and some days it appears to wear out by 12 pm but on other days can last until the evening. When I went to Greece during the summer I also found that I required 50-100% extra spray than when I was at home."

• Steroid treatment requires good management by both the patient and clinic. The clinic is responsible for ensuring that the patient understands when to take the medication and by how much and under what circumstances to increase dosages. The patient has to understand how the medication works, when they need to take it, when they will need to take more, and what to do in an emergency.

" I was initially put on too high a dose hydrocortisone and although I had a lot of energy I was also experiencing psychological disturbances. Although I didn't associate them with the hydrocortisone at the time they became less frequent when the dose was reduced and now I am on an appropriate maintenance dose for my body they have gone altogether. Unfortunately due to these experiences I am very reluctant to increase the dosage for any length of time during periods of stress or illness and tend to try and battle on regardless."

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