This info is posted for the benefit of others who are struggling to get the nhs to take their adrenal fatigue seriously. Ask for a long synacthen test (the short test is useless as only indicates primary adrenal fatigue when secondary is more likely – and harder to diagnose).
Most nhs endos don’t know how to interpret them, so get it done anyway, insist on a full read out of the results and take them elsewhere for interpretation. Even though my morning cortisol was off the scale, I was offered no further testing – it was I who wrote my endo asking for this test several months later.
Make no mistake, the test is a huge upheaval for those who have the typical adrenal insufficiency symptoms: severe hypoglycaemia, CF, vertigo, palpitations, etc. NHS will tell you not to fast, however fasting is necessary before the first bloods are taken (ie so that your cortisol levels are not stimulated by food, drink, etc). Thanks to the poster who alerted me to this.
Staff at this particular hospital had no clue about the protocol; timing of the tests is critical, particularly the first which should ideally be done by 9. We were pushing 9.30 am while they were dithering, trying to tell me the synacthen could not be adminstered IV, when I know it can. So I gave up and agreed to a dreaded IM injection (I avoid these in UK as the technique they are taught is just awful – once you have one in another country, you realise it’s not so painful when done properly).
I was not asked my date of birth, not asked for current symptoms, medical background, or warned of the possible side effects of synacthen. I was told “the doctor knows everything about you”. Which is untrue, since I have 3 specialists at 3 hospitals who don’t link in with each other and much had happened since I’d last seen this particular specialist.
The nurse never introduced herself and was not wearing a name badge that I could see. She wasn’t interested in the fact I was experiencing dizziness and that I was freezing cold, that I am iron deficient and don’t feel when when I have blood taken. This test involves several samples being taken throughout the day.
Lunch rolled round and unsurprisingly there was nothing safe for coeliacs to eat. UK hospitals don’t yet cater for coeliacs in 2013. The server had no clue what I meant when I asked for gluten free. I feel sorry for others who are coeliac and hypoG, as if you didn’t have the foresight to bring a big bag of food to last you from 8.30 – 4.30 + the trip home you’d be in real trouble. I dread to think what happens to coeliacs who are admitted to any UK hospital, as not one that I know of caters for coeliacs.
Towards the end of the day, the nurse tried to fob me off and tell me that the test that was required the following morning, I could perhaps have my GP do! The next day’s test MUST be done by 9.30 am before cortisol levels rise. Can you imagine, my nhs gp has a waiting time of 3 weeks for an appointment to get the blood test form, then you go elsewhere for the test. I nipped this right in the bud and said I would be back 8.30am sharp for my test (otherwise all this upheaval would have been for nothing). Proves again my point that they are clueless about the protocol.
Side effects of synacthen: I literally lay awake all night, so got up shattered and headed off on an empty stomach for my final test. I also went from freezing in the morning to boiling a couple of hours later. The 2nd morning I was cold and shivery after having blood taken – it was about the 7th vial at that stage. I came straight home and have been resting since.
If you have a choice, get this test done at Guy’s rather than Chelsea and W. Their equivalent unit is 3 x the size, well staffed, very comfortable with music playing all day long. Also, they check your name and DOB and tag you. (nothing for coeliacs to eat there either though)
One more thing, I was initially told my last test would be 5.30 (by specialist’s office), yet in passing, I noticed the day unit shuts 4.30 – so fortunately was able to reschedule my ride home. As always when dealing with the NHS, check every little detail, take nothing for granted and do your own research.
I see my endo in Aug when I shall insist on a full read out of the results and hopefully report back here.