Last updated August 2025.
I was diagnosed with Cushings Syndrome in 1980 at the age of 28. Up until then I had been a reasonable fit male, although never athletic. My main hobby was bellringing and when I put on 2stone (about 13kgs) in a few months and struggled to climb stairs I knew something was wrong. I also developed striae (stretch marks) from my armpits down to below my knees and my skin became quite greasy.
I went to see my GP and remember saying 'Doctor, I think I'm going bad!'. I was so lucky that his wife suffered from Adrenal Insufficiency and he immediately told me he suspected 'Cushings'. I was referred to Hull Royal Infirmary and shortly afterwards to (what was then) the Metabolic Unit at Hammersmith Hospital under the care of Dr (later Prof) Joplin. (This is now part of the Endocrinology Department of Imperial College Healthcare Trust.)
Various tests with both Dexamethazone and Metyrapone were carried out along with venous sampling and eventually suspicion was cast on a tumour on my right lung. The existence of this tumour was confirmed by a CT scan carried out at Bart's in London but it was not known whether it was secreting ACTH. During this time I also had the rare privilege of being examined by some gynaecology students!
Dr Joplin had explained to me that Cushings was not compatible with life and so something had to be done. The date of Friday 13th February 1981 was fixed for my surgery and the plan was to remove the lung tumour and test it for ACTH. If it was not the culprit then I would be rolled over and my adrenal glands removed. I woke up in intensive care and was relieved to hear that the lung tumour had been found guilty. I left Intensive Care on the Monday and after a couple of weeks or so returned home.
Annual check ups at Hammersmith became the norm and in those days lots of tests were carried out after a 24 hour urine collection. This meant carrying a bottle to pee in everywhere I went. These days a simple blood test can do it all - so much easier on the patient!
At the time I was told to take care of my back. I also read that patients who had suffered Cushings had 4 times higher chance of suffering cardiovascular problems. (Research at Imperial College has subsequently shown that there is a tendency to over prescribe steroids in cases of Adrenal Insufficiency and that it is more than likely that this over prescription that can lead to cardiovascular problems and osteoporosis.)
All was well until December 1983 when I met up with my ex wife for lunch. She remarked to me that she thought 'that Cushings thing is back'. I didn't believe her as I felt fine but I contacted Hammersmith all the same and they arranged for me to pop in for a few days in March 1984 for some tests. Ironically I met up with a research doctor who had followed up on my case back in 1980/81 and had just published a paper on my case which concluded with the sentence 'During follow-up he continues to be in clinical and biochemical remission and on no treatment.' How wrong he was!
By early May 1984 I was back in Hammersmith and having midnight and 9am bloods taken, back on Dexamethazone and Metyrapone. I asked how this recurrence was possible if the tumour had been removed. It was only then that I was told the tumour had in fact metastasised (spread) during or just before the surgery. I was given a scan with radioactive Selenium which was inconclusive and then on 1st June I met Dr Halnan and Dr (now Professor) Sikora who explained about the chemotherapy (5 Fluorouracil and CCNU) I was to be tried on. On the 8th June I also started a course of X-ray therapy. By the end of July I was back home for weekends and life was starting to revert to normal, although the chemotherapy continued until November 1984. My diary for 20th November 1984 has an entry '4-1 to me', meaning I had only been ill during one of the five courses of chemotherapy. The chemotherapy and X-ray therapy appeared to have done the job of shrinking the tumour, although my diary records one of the doctors telling me that it had not been as satisfactory as hoped and we may have to consider an adrenalectomy. I was also given an experimental dose of GNF which I was told may have some positive effect on the tumour.
As an aside, during my stay on Ward B2 at Hammersmith I had my trusty BBC 'B' microcomputer with me. I was developing some software to help with bellringing compositions and this as least kept me sane whilst in hospital. One of the doctors took an interest in this and started quizzing me about keeping records and searching them. He arranged for me to spend some time in one of the labs with him and I came up with some simple and very basic examples of what was possible. This resulted in the Metabolic unit buying a couple of PCs and starting to develop their own systems. Things have moved on a little since then!
1985 was a good year. My firm had moved me to work in our new London office and this meant that popping in to Hammersmith was no longer a chore. I spent a week in the Metabolic unit in March and I was fine for all of 1985 and until the start of 1986. My firm wanted me to move back to Hull and so I had suggested to Hammersmith a check up before I leave London. The tumour showed signs of waking up again and my ACTH levels were elevated. I was given more chemotherapy and this time was quite poorly with it. The last course of chemotherapy was in November 1986 but unfortunately there were no signs of any improvements. I was put on 12g Metyrapone daily and this seemed to be keeping the cortisol levels under control but the doctors explained that this was not a long term sustainable dose. On 6th May 1987 I met Mr Lynn, an endocrine surgeon, who commented that I should have had my adrenals out years ago and saved all the experimentation (easy for him to say!). He recorded some notes and I remember him saying 'I'll do this one myself'.
So on 27th May 1987 both my adrenals were removed. To get at the adrenals both bottom ribs had to come out. I was told I would need to take Hydrocortisone and Fludrocortisone daily for the rest of my life. The dose of Fludrocortisone was set at 100mcg. My immediate post surgery dose of Hydrocortisone was 300mg iv to compensate for the absence of overworking adrenal glands. Once we were down to 50mg daily I was put onto tablets and told to get as low as I could on the Hydrocortisone without feeling feint. The dose was to be taken half with breakfast and half just before retiring.
I got down to 10mg Hydrocortisone twice a day but my ACTH was still elevated. They asked me to pop down for some tests and the medics were convinced that the surgeon must have left some adrenal tissue but they were too scared to ask him. I rang his secretary and asked to see him. I explained the thoughts of the medics and he assured me that there was no trace of any adrenal tissue left. The medics then asked me if I would agree to stop taking the Hydrocortisone and see what happened. I was given a bed on a ward with a nurse or doctor with me all the time and after 36hours my blood pressure started to drop quite rapidly. A quick injection of Hydrocortisone and I was fine and allowed to go home the next day. Now the medics were convinced that Mr Lynn had done a good job!
My annual trips for check ups enabled me to see improvements in medical science as 24 hour urine collections were replaced by taking a few mls of blood. A 3 day hospital stay was no longer necessary and I could get down and back in a day.
Sometime around the year 2000 I met a Dr (now Professor) Meeran in Clinic and he suggested that research showed my second dose would be better at 2pm rather than last thing at night. (I later learned this was to try and mimic the body's natural circadian rhythm). This was not very convenient as I did not like taking tablets at work and so I used to take my second dose when I got home from work and sometimes I would omit it completely.
At some point in about 2008 one of the clinic doctors suggested I would benefit from Colcalciferol as this would help me to absorb vitamin D. I have been taking 20,000 units twice a month since and vitamin D is fine.
In 2018 I mentioned in clinic that I sometimes omitted my second dose and I was asked if I would take part in a trial to try just one tablet a day. I readily agreed and was put on 5mg Prednisolone, we then reduced this to 4mg then 3mg and then 2mg. At this point I found myself quite lethargic and even sinking to the low of watching Judge Judy on daytime TV. I went back up to 3mg and we did the trial with me on 3mg starting in December 2019. For 4 months I was on tablet 'A' twice a day and then 4 months on tablet 'B' twice a day. 'A' was either 10mg Hydrocortisone or 3mg Prednisolone and a placebo. Unfortunately Covid and lockdown came along just as we finished the first part of the trial. At the same time I received a letter saying I should be shielding. We put the second part of the trial on hold until I was no long shielding but even then staying overnight in London and using the underground was still considered too risky so we would leave home (East Yorkshire) at 4:30am, drive to Imperial College for 9am to have fasting bloods taken (after stopping at 7am on the M1 to take my steroid tablets as the bloods had to be 2 hours after taking the steroids) and a few tests and then have a quick snack and drive home. They were exhausting trips but I hope the trial has shown some benefits for others suffering Adrenal Insufficiency or related disorders. Personally I could tell no difference between the two steroids and clinically the results appear to be the same.
In June 2021 I discovered that there was a 2.5mg tablet. I discussed this with the research doctor at Imperial and he agreed I should try it. We knew 2mg was just a bit too low for me and 3mg was OK. So I reduced to 2.5mg Pred after breakfast and feel fine and have lost just under 8kgs up to the time of writing in April 2023.
The research doctor had always thought I should be able to manage on 2mg Prednisolone daily but my efforts to get down to this had always led to me feeling a lack of energy and not my normal self. During 2023 and early 2024 I had several attempts at reducing from 2.5mg to 2mg and I tried this by taking each on alternate days. After a few days I was feeling tired and gave up and went back to 2.5mg. I had almost given up thinking I could reduce from 2.5mg when one of the doctors at Imperial sent me a chart which showed how to reduce from 3mg to 2mg over 7 weeks.
I decided to try this reduction regime and I was quite amazed to find that at the end of week 7 I was down to 2mg daily and feeling normal in terms of my energy levels. The conclusion I draw from this is that my body is happy to function on 2mg but it struggled with the change from 2.5mg to 2mg. When the transition was made very gradually over a longer period it was no longer rejected by my body. I drew an analogy with climbing stairs. The actual climb uses an awful lot of energy and one can become quite breathless, however once at the top of the stairs normality returns. The 2mg was the top of the stairs and the change was the climb. Climbing the stairs over 7 weeks was easier and my body handled it.
The chart I used is in the public domain on the Imperial College website and can be found
here. I strongly recommend discussing with your Consultant before attempting to reduce using this chart.
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