And It's About Time There Was Some Support For Cushing's!
Cushing's?
I started going to the dietitian aged 9/10, but the weight problem didn't kick in fully till I was 11 and at secondary school. IN those days it was emotional fat - I'd been through a lot, and stuffing my face was easy, soon I was the same weight in stone, as my age in years. I was expected to reach 6', but I stopped at 5'8".
I was always described as being highly strung. I used to fly off the handle all too readily, and came rather close to expulsion from my school.
In spite of many diets I couldn't lose weight and I was prone to mood swings. I would train hard, doing hundreds of sit ups, but my tummy would never shrink. I would get cruel comments from my grandmother about my weight and I struggled to keep my weight down. I was bullied by dietitians and the school nurses about it. They meant it kindly, but they were convinced I was cheating on my diet, as I would gain weight on about 600 calories a day. The school chaplain thought I was attention seeking, and eventually stopped talking to me. He was (among others) always telling me that no one fat came out of Belsen. The doctors ran the usual thyroid tests, but never did any more than that, apart from the dietitian.
By the time I left school I was considered to be among the fittest students in the school. I could cycle 20 miles, swim a mile, trampoline for 6 hours, cycle back, and then go ringing, and feel only a little tired. My gap year went disastrously wrong, but somehow I lost weight (under 14 stone!), and held down a job for 3 months.
Then my moods started swinging again, and my weight stabilised at aviyt 15st 7lbs during my first year of uni, having peaked at 17st 9lbs at the worst point. There was no rhyme or reason to the weight swings.
During my first long vac I saw a hypnotherapist, cut out wheat, and my weight dropped to less than 15 stone. My tummy was still too big, but hey! Anyway, in May 2000 my dad died of a brain tumour (his second) after a long illness. I started to put on a lot of weight, and in spite of following slimming world, and cutting out wheat, my weight soared past 18st. It kept on piling on, and my depression got worse. My relationship with Simon was on the rocks, and in October I went to counselling. By December I was 20 stone, and sleep huge amounts. I had terrible stretch marks, and was aching, both of which I put down to my weight. Lesley, my counsellor, suggested there was more than just something psychological going on, and that I should go to my GP and get referred to an Endocrinologist.
I went to my GP: I'd been losing hair, my periods had changed, and then stopped, I'd gained 5 stone, I was tired a lot of the time, my mood was swinging, and a few other things. Anyway my GP knew me well enough to be convinced that this wasn't normal and ran a few tests. I was always thirsty and bloated, and my acne was back. Most of the tests he ran came up negative: liver function was iffy (probably wheat intolerance according to a friend), but a scan showed it to be fine. He referred me to Addenbrooke's, the university teaching hospital.
I saw Dr Keily, who said he thought that it was my weight causing the problems, but ordered some tests anyway. I was embarrassed to be thought such a nuisance, and nearly didn't do the 24hr urine. I had a barrage of other tests - scans, blood, urine. He'd muttered that I didn't have Cushing's disease, because my arms weren't right. (I didn't know what it was at this time) I pointed out that I had had fairly powerful arms at one time from swimming, working out, and trampoline coaching, but he ignored that.
I didn't think about Cushing's at all. Simon and I split up. I assumed that the state I was in was all my fault. I missed a follow-up, assuming it wasn't important, but went to the rescheduled appt after being ticked off by my GP. By this time the depression/anxiety had set in so badly they were treated with anti-depressants, and I had some problems with paranoia. At the follow-up I saw a different Dr, who mentioned Cushing's again, and that my cortisol was 214, which was high, but in the middle range, and that he wanted me to have further tests. He noted my little hump, the roll of fat round my neck, my weight loss (I'd cut out wheat again) and asked about my skin and a couple of other things.
I hadn't connected my back/leg/arm aches with the possible diagnosis, so didn't mention them. I'd assumed they were down to wear and tear, and didn't want to give the doctors any more ammunition about my weight. I'm touchy enough about it as it is, without them having cause to say fat=unfit=bad shape.
For a couple of days I thought nothing of the appt. Then after a counselling session I thought I'd better look this thing up. The symptoms matched, and I was terrified.
I don't know if the subsequent leg/arm pain is psychosomatic, but I do know that bouncing is out of the question, as is kneeling or standing for long periods of time. I coach still, but 2 hours of that is enough to render me useless.
It's 2 weeks since the follow-up and I'm waiting for an appointment date with the endo. Normal life has stopped. I'm terrified. Terrified that it is, terrified that it isn't.
But finally there's a glimmer of hope that it's not my fault entirely, that I'm fat. I accept responsibility for the emotional fat. But I feel that there is some fat unexplained, and I hope this explains it.
Maybe it's 20/20 hindsight. But maybe, just maybe I'll find the truth.
I went to Addenbrooke's twice since the beginning of the month, and there have been a couple of other incidents that may be of use or interest.
to take events chronologically. On June 1st I saw Dr K Swamanathen, (registrar) and Dr Owen Edwards (consultant endocrinologist). They were very thorough, and for the first time I thought that things might be looking up for me, and that they thought there might be a problem.
They noted my symptoms, and said that Cushing's had to be ruled out. It could still just be "simple obesity" but if it was then it wasn't something that could be treated easily by diet, and was a genetic disposition. They took a medical history, with some help from my aunt who had come with me to the appointment for moral support. They asked for more cortisol tests, as one was insufficient, and arranged for me to return in 4 weeks time. They also ordered a Low Dose dexamethasone suppression test, which was completed on June 7th.
On the Sunday, Simon came down to see me, bringing most of my stuff from Newcastle for me. He was visibly shocked by my physical condition, so I tried to be as normal as I could be. I'd shrunk a couple of inches since January, when he'd last seen me, and my weight had completely redistributed. I flitted around my room, putting my stuff away, as he handed it through the window to me, so I wasn't carrying it. Anyway, I started to feel a bit dizzy, and took a break, steadying my breathing, and then carrying on, thinking that I'd been hyperventilating.
10 minutes later, I collapsed into a chair, with a heartbeat like a hamster's, feeling dizzy and lightheaded, my breathing ragged, and unable to focus. I struggled through to my bedroom, to lay on my bed, and burst into tears - although i get tearful, it's not usually that easily. I didn't return to normal for several hours, and even the following morning, my heartbeat was rather faster than usual, though not by much.
June 7th I went to see the Nurse to get my blood taken, and she noted my symptoms, and got a bit miffed with my GP's attitude. I had a rant, and felt better, that someone in that practice believed me.
June 8th I saw the registrar in the general medical clinic. I got the impression that he believed there genuinely was an endocrine problem, and he suggested that I might have had an adrenaline problem - coupled with the pain I had experienced in that area a couple of weeks ago. He ordered a 24hr urine to check for metabolites of adrenaline, and also a heart tape, for the beginning of July. He was very good, and I'm starting to feel as if they're taking the whole thing more seriously now. It could be to do with the fact I walk with a stick now.
I go back to the endo on July 6th, and the general clinic on august 3rd. At this rate I am scared that they won't have found the problem, and i won't be able to go back to university in October. This would leave me with a major problem of having nowhere to live for next academic year, and no means of transporting my stuff there. Even if I did come back, I have no confirmed accommodation, and my lack of balance due to the uneven weight distribution, means that I would need a ground floor room, with no steps whatsoever. The accommodation I have now is ideal, as it is central, accessible, and spacious.
I coach trampolining as and when I can, working with friends, and enjoying it thoroughly. But it tires me out, without even trying to do any bouncing.
Well I've had a few scares - some very vivid dreams, and waking up with the weird heartbeat. Had a great evening in Clare Gardens watching Alice in Wonderland.
managed to get sunburnt sitting in the deerpark in the morning - hot, red, but not actually that sore - I suppose that is something to be thankful for the cortisol!
Been very depressed for about a week - kind of lifeless, and emotionally uselesss. This can be blamed on Mayweek, the source of all cambridge evil. Back ache is getting very common now - have it most days. Stomach is inflating, and the stretchmarks are getting more pronounced. I've contacted the local ACTH rep - association for cushings help and treatment, and we went out for lunch the other day. Ginny is really great, and I learnt a lot about the disease, and what to expect. She told me about how she had cyclic cushings, and her hair would go curly whenever the cortisol was high.
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My name is Miriam Moules, I'm 21, and a student at Cambridge University in the UK.
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