(Click the banner above to link to online bookstore) * * * * * * Graves’ Disease - Exopthalmos - Myxoedema - Autoimmunity - Psychosis - Schizophrenia - Thyroidectomy - Dopamine © Lisa Scullard 2007 UPDATE: Enter author’s blog here > Photo © Jason Kay for Ocean & Collins Nightclub, Southampton Notice: The article on this page is from personal experience. If you have a specific condition you should always seek professional medical diagnosis and treatment in the first instance. An alternative or complementary therapist should never promise to cure an existing condition. This article may be quoted, fully referenced, in academic and published material. Professional, scientific and academic feedback is welcome. Please excuse my sense of humour in writing some of it J In 1986 aged 15 I was diagnosed by my G.P. with an overactive thyroid. My hitherto excitement had been limited to being a short-sighted child with a tooth braces phase who was allowed to play Murder In The Dark on Bodmin Moor, reverse the car out of the driveway and walk myself to Taekwon-do. I had a high pulse rate, fast metabolism but no weight loss, felt the heat too much, slept little, my eyes had begun to stare and a swelling had started to develop in my neck at the site of the thyroid gland. I was told I did not need a specialist as it was most likely a case of adolescent hyperactivity and would sort itself out within six months on a course of beta-blockers. Six months later I had gained over four stone, slept all the time, had no energy, still had the fast pulse, my eyes had distended fully into exopthalmos with eyelid retraction, and I had a fully distended toxic goitre. My G.P. at the time insisted the tablets were doing their job and if I stopped taking them I risked a heart attack. A few months later I decided that the tablets were doing nothing apart from making me sleep, gain weight and feel lethargic, so I stopped taking them and stopped seeing my G.P. I had stopped working hard at school and decided it was a waste of time, and dropped out the Easter before O-levels, although without revising I turned up for every exam except maths and passed everything except for English Literature (I thought Wordsworth was writing poems about flowers to impress girls with, and if Hardy’s poems and The Lord of The Flies were metaphorical then why didn’t the authors just write something else more clearly that didn’t have to be dissected by school kids to tell the truth and I said so - early signs of attitude on my part). I went for a session of acupuncture and was told scar tissue from chicken pox on certain points might be the underlying cause. I was willing to try anything at this point, still believing it would clear up spontaneously as my grandfather’s had done when he changed jobs, as I noticed a year had passed though I hoped for that and got onto a college course taking art, maths, drama and computer programming, but I thought the art and drama classes were too restricted, found myself practising the Russian alphabet in my maths book and just as computer programming got interesting and we were starting to discuss programming in C with fixed assigned values, our family moved house and I was too far away for the college bus commute so I dropped out and hung around village pubs and bus shelters and the recreation ground and alcohol became my weekend hobby instead. It was failing to get a job as glass and plate washer due to my thyroid condition that persuaded me to go back to the G.P, who wanted to put me on the same tablets again and insisted there were no specialists for overactive thyroid. Luckily my mum didn’t believe him, and looked up an endocrinoligist in Harley Street in London, saying we’d find the money somehow to pay, and when she called the office was told he ran a weekly clinic also at The Royal Free Hospital in Hampstead on the NHS and I could be seen there instead. So about a month later I had my first appointment, met the specialist, had tests done, was paraded in front of a dozen or so medical students and prescribed different beta-blockers. And so I began monthly visits to the clinic to be weighed, have blood taken, have my pulse rate checked, and to be shown to medical students. My eyes were really bothering me - they were asymmetrical (29 and 27 mm), stared a lot and got commented on all the time. I wasn’t having an active teenage life at all and eventually got a job in a pottery in Rye painting pre-fired crockery where all I saw were the two other artists who were really nice, Phil and Lyn, but I got enough teasing and comments from people waiting at the bus stop every day to have it reminded enough that I didn’t look normal. Whenever I went to the clinic all I was told about my eyes was “Wait, they’ll go down when your thyroid is better”. For the first time it was described to me as Graves’ Disease named after the doctor who discovered it - an autoimmune condition where the body makes antibodies to thyroxin, which the thyroid gland mistakes for thyroid-stimulating hormone and consequently makes more thyroxin, overloading the body. I had only just begun a monthly cycle when I became ill, which had stopped again due to the overworking metabolism and was having one or two periods a year. This didn’t bother me too much as my first ones weren’t a lot of fun to be honest, I wasn’t much of a hero at 14 with cramps J But the mention of it being autoimmune struck a chord with me as I’d always known that I suffered Bell’s Palsy as a baby and had been given a month of steroids to cure it. Bell’s Palsy is where the immune system attacks the facial nerves, causing partial facial paralysis. After about eight months of clinic visits and meeting about 100 medical students, I was a bit pissed off about being 18 and a walking textbook, and the specialist said I could try a week’s course of intravenous steroids to try and reduce the eye inflammation, as it was supposedly the thyroid antibodies causing them to protrude and stare. I had to stay in hospital and the treatment wasn’t much hassle except my drip vein kept trying to heal up (I left much better about needles than when I went in), and afterwards noticed a bit of improvement of a couple of millimetres, and also lost some of the weight I’d still not shifted but that wasn’t planned. I felt better enough to go to America and travel around a bit on my own for a few months, but when staying with relatives and friends in Florida I noticed from photographs that my eyes had worsened again. A surgeon whose family I stayed with, Richard Goulding, offered to get me an appointment at a University hospital and often commented to me when he came home from work “I took out four thyroids today, I could have stuck you on the trolley in between.” His wife P.J. said to me it frustrated him to see my condition untreated and that he would sometimes think of offering to operate on me on the kitchen worktop J In the U.S. what I was taking as my ‘treatment’ from the U.K. in terms of medication was usually only given as pre-operative treatment, not as a long term solution. P.J. eventually spoke to my mum back in the U.K. and agreed I should go back home and continue to see my specialist there with a view to surgery. When I did get back, my specialist poo-pooed the American way of doing things and said the tablets were working, let’s measure your eyes and palpate this thyroid so the students here can see! Everybody gather round so you can see and prod the walking textbook case. I tried shiatsu, homeopathy and saw an osteopath to pass the time between students. At least then I was being prodded around with some sort of purpose. Shiatsu was nice, it was very relaxing, although she said my energy levels were always soaring as if I was in love. I was always in love with some guy or another, but they never noticed me, I seemed to collect unrequited crushes one after the other. That year my grandfather died, I wrote a novel and bought two motorbikes, and it was when my specialist retired that autumn and I met his replacement Dr. Fonseccia, that in our first appointment he offered surgery. It must have been because no students had turned up that day. As you can imagine, I had never been so happy at the prospect of having my throat cut. In the November, it was taken out. I wanted to see it afterwards but they wouldn’t let me, it had gone to the laboratory. I got back to my Dad’s four days later and got straight on my motorbike to go to my Mum’s, my step mum nearly threw a wobbler, she thought the strap on my crash helmet would pop all my stitches and staple marks. Anyway, the next few months were interesting. I had a lump where something had tissued or scarred on my thyroid cartilage, bits of stitch to pull out with an art scalpel for fun and a new job at a T-shirt printer’s which I started the week after leaving hospital. The hospital had said they left a bit of thyroid gland behind which would work and make enough to live on. The next February it turned out that was not the case, when I had to be sectioned with a psychotic episode due to sudden lack of thyroid hormone. Whatever I was experiencing the psychiatrists were fairly convinced I was a “textbook schizophrenic” (oh, God, the students again) however once I was on thyroxin I soon became normal, and the professionals’ insistence that I was living in a fantasy world soon became their own fantasy world when my mum turned around to them and said “Yes, she really did go to America and has written a book and did martial arts, she’s not making that up.” I got out after a month when they allowed me home for the weekend and my Dad refused to take me back after. I got a job making special underwear for Muslim women in a little Arab guy’s sewing factory in his back garden. I did cutting out and bra straps, four other ladies worked there. I didn’t like the bandsaw they used on the pattern table, I worried about taking my thumb off with it. So I applied to start a motorcycle mechanics course in London, both my bikes were by this time in bits in the garden and I was painting custom pictures onto other people’s leathers for fun (I have to say fun, only a couple of them actually paid me when they said they would). The lump on my thyroid cartilage disappeared by itself and I forgot all about it. Still having my monthly check-ups at The Royal Free, I went on about my eyes having had enough of students and got referred to Valerie Lund at Moorfields Eye Hospital in London, and that July in 1991 had my first orbital decompression through the skin on the inner corners of my eyes excavating the sinuses. For the first time I could close my eyes when I was asleep, it made just enough difference. I went to college and the next February had another psychotic episode and was sectioned again. Turned out my dose of thyroxin was too low. Again my mum had to correct the psychiatrists that I wasn’t making up stories about my life when they asked me and yes I really was at college studying motorcycle mechanics and not living in a fantasy world. One of them wrote my mum a plaintive letter saying I was adrift in society not doing anything real with my life. Which was strange as everywhere I was seemed pretty real to me. It probably didn’t help when the top psych came to see me and said his name was Mr. Bird, I said “Mr. Bird? How was your flight?” He looked a bit spooked and it turned out he’d just come back from America, so my in-patient joke was kind of lost on him J The Poll Tax caught up with me when I went back to college and swallowed my last term’s grant, so I applied mid-recession to join CSV (Community Service Volunteers) which my mum had done after leaving school, they thought it was very interesting and I was probably the first second-generation family volunteer. I got posted to a care in the community housing project in Stamford Hill for a year, we did lots of training because the political correctness and concept of independent living and who it was for was still being established. A lot of the other people I worked with had their own issues with being politically correct or diverse enough to keep a job there, like being gay and alcoholic and on drugs. At least any of them being gay didn’t risk the lives of the residents when driving the minibus, that’s all I can say. I hung out with some skateboarders and played Sega Megadrive quite a bit and shot milk bottles with an air pistol, sometimes also shot washing machines and fridges dumped near the Crystal Palace railway line from the back garden of Hamlet Road, and once shot the teddy and the socks hanging on the neighbour’s washing line from the attic of Russell Road in Wimbledon, and a few times got drunk with colleagues which was horrible. I wasn’t politically diverse enough to get a full-time job there when it ended, being not gay or minority enough, and it wasn’t cool to tell anyone I might sometimes be technically schizophrenic when actual schizophrenics were better known for stabbing people on the Underground at the time, one of the reasons I took my air pistol on the Underground. (I pointed it at a strange man annoying me in a carriage late one night, he leapt out of his seat in fright and then asked if I was married, I think he wanted a Green Card). So I didn’t think putting that down as Equal Opportunities on a job application form would be a fun way of expecting special treatment and a guaranteed interview. As long as I took my thyroxin tablets I didn’t seem to be anything except normal anyway, and I’d much prefer to be assessed on the basis of being normal. But as I said being normal wasn’t good enough to get a job under Equal Opps, so I got shift work through an agency for the same residential home after my voluntary year until I got disillusioned with it and was told to edit an incident out of an incident report. I shortly afterwards went back to Valerie Lund this time at the ENT hospital in London and had an endoscopy operation from inside my nose in March 1994 on my left eye only to excavate more bone and get my eyes slightly more symmetrical - I’d seen the Moorfields team and they’d said I’d only get more work done if I went abroad to Holland or Germany so I said I would go abroad, but Miss Lund was nice enough to contact me and say there was room for improvement as she’d be much less conservative about how much bone she could take away than she was two and a half years ago, so after that op it did encourage me that nothing was really a dead end - sometimes you just had to wait for technology to catch up with what you needed doing. An insane landlady in Tottenham in the meantime thought I might like to marry somebody foreign for money she was possibly related to so they could live in the U.K, and after bringing a few to my front door (okay, her front door which I was renting, and usually answered with my air pistol hidden behind my back), I got fed up of her intrusions and after smashing some of her windows (I had to, she had disconnected the heating and hot water and locked the utility room), I moved to Hastings with my cat named after Cynthia Payne because she was a tart. All cats are tarts, but mine was going to be top tart. I was trying to write a sequel to my novel which was sitting around bordering on the slush pile at Pan Macmillan but they liked it and wanted to see the sequel first, but writing on demand wasn’t suiting me and I ended up doing lots of things to avoid the pressure like being a bouncer and working with old people and a motorcycle racing team and on voluntary bike projects for kids and making old bits of bikes into old new bits for bikes in Brighton and on a supermarket deli and in the Carlisle, Hastings’ biker pub. Bikers seemed to die all the time, it was a bummer. My book got sent back when the editor at Pan Macmillan was fired and his office was cleared, I don’t remember if it bothered me much or not. I would fight ninjas for fun at the biker pub and then they asked me to join their martial arts club so they could beat me up too. I got bruises and then got pregnant training in Portugal so they couldn’t beat me up any more, that was a relief. My brother fixed my air pistol and shot a spider with a paper pellet to check it was working, the spider was two feet wide and one micron thick afterwards, it might not have survived, and I gave the air pistol to my landlord’s son before the air pistol amnesty. I had my baby on my own which was great, then won a film script pitching thingy Live!!Ammunition!!! at Raindance in London in 1999 and wrote a script and made a short film and got fed up of it and started reading up on astrophysics instead. I helped make another short film on the beach at Camber which was better, my brother came and helped too and told everyone on the beach who came and asked that it was soft porn. I had a bit of trouble understanding the maths though from Jodrell Bank. I was meant to be working on the maths one day late in 2002 when I was writing my diary instead (something depressing about still being single) and wrote “Why do I fall for someone who looks me right in the eyes, they’re only looking AT my eyes because something’s wrong with them, they’re never attracted to me” and I realised I was still dealing with my eye condition without dealing with it - my eyes would close comfortably to sleep but still had noticeable exopthalmus and very noticeable eyelid retraction, and since having my baby I had got more introverted and more desperate again. By that I guess I mean I wasn’t going out and hanging out with my friends to pass the time and it didn’t seem like much fun anyway. I went to TAGB class and entered the British and Southern competitions and got nowhere, it was boring, so the fun of training went away as I found I didn’t like competitions anyway. I helped a lady named Joanne make a film for a poetry festival about a domestic violence incident, in return she did a past life regression for me. It was something about being in Egypt, maybe I had just watched Tomb Raider or Indiana Jones. She did have a lot of papyrus pictures on her walls. I decided to try rocket science instead and got a place at Southampton Uni as well as an appointment to see a private exopthalmic surgeon in Bristol, while I was still in Hastings I was a case study for Thai massage, it really relaxed me but as usual brought up my emotional stuff about being single with weird eyes, she was very nice and ranted at me for not getting a guy’s phone number, but he had a girlfriend anyway who gave me funny looks in the Crypt. I scrapped my Volvo with the Manx number plate that the police kept stopping me to ask about and bought a Peugeot 205 1.9 GTi, it went like the clappers, I got three tickets in a month when the speedo broke. The surgeon in Bristol said he saw lots of women like me having a mid-life crisis and it wasn’t something he would operate on. I didn’t realise I was in mid-life let alone know what a crisis in it was, it was something I’d had since I was fifteen which was roughly half my life now and I wanted to get it over with so that I could get on with having a normal life and things like mid-life and crisis to look forward to. He said he would write to Southampton General eye department and then he sent me a bill to Hastings which I didn’t pay, because he made me feel like topping myself and I moved to Hampshire that Easter which was much better than topping myself and had the added bonus of getting away from stalkery people in Hastings who had a different interpretation of what staring eyes meant than I was used to. I was used to being called names and pointed at by small children and people asking me if I was on drugs, that sort of thing, but people thinking I stared at them deliberately and it meant something else and then followed me into shops or rang my doorbell at 2am, that was a bit too unfamiliar and freaky to me. Or maybe a bit too familiar, on their part. The Southampton Hospital specialist was nice, she sent me back to Moorfields to see a Mr. Geoffrey Rose. I wrote them a letter first saying I’d been before and was having problems still not looking normal, I think I summed it up in about ten pages, so they could read it before I got there and not have to hear it all at my appointment. They said they did lots of things now since ’Professor Lund’ (golly!) like fix the eyelid retraction, and first could take out the remainder of the floor and side walls of my eye sockets leaving the rim from an incision in the outer corners of my eyes in September 2004. I was working as a bouncer and people asked me if I was on drugs every night I was at work, I couldn’t wait, if they had offered to operate through my ears or the soles of my feet I would have been happy. Physics and engineering foundation year was challenging me all right mostly with the commuting and not having enough time for homework and waking my daughter up at 6am to leave and not getting home to see her until 7.30pm was draining but at least I was starting to get the hang of the maths. I don’t know why I’ve been fixated with wanting to know more about maths, I used to write anything except maths in my maths books at school. I didn’t associate maths with physics at the time though and I like Physics now, things go up and down and bang and light up and decay by numbers, it’s really interesting. So I had to either resit or refer my foundation year or blag my way onto Geography, which I did, then I had my operation in the holidays and it was really strange, lots of people in my family were staring back at me from the mirror but I couldn’t see the Lisa anymore who’d lived for the last 18 years in my body. I had lost sensation in my face in some areas where the nerves were cut and had a clanging headache all the time but in a strange way it was all worth it, I had lost a psycho staring at me in the mirror and gained a completely new adult person I didn’t know but looked like somebody - I just didn’t know who that somebody was. All I do know is that somebody who had grown as a personality in my body as a result of the illness either in spite of or in self defence of woke up and looked in the mirror one day and she wasn’t there. I actually heard her scream and run away. And my body was left there saying ‘Who am I?’ And the funny thing was these two scars in the outer corners of my eyes, when they were visible it looked a bit Egyptian - like I’d described in my ‘past life’ session in Hastings. After a bit of smashing my car up and trying to pick fights with the police in my pyjamas and some sleep and some anti-depressants and some counselling, I felt a bit better. My mum had to say this time, no, she really is a bouncer, she’s not making that up, it’s not a fantasy world. I spoke to some friends about it who still haven’t seen me yet, and said, having your eyes changed is the weirdest thing in the world. People respond to you because of the way your eyes are, and if your eyes are suddenly a different pair of eyes, people talk to you as if you’re a different person. It’s as if we’re programmed to respond a certain way to the looks people give us - looks that are challenging, looks that are safe, looks that are innocent, looks that tell you something is wrong with a person - but until something like that changes, you don’t even know that your experience of the world depends quite literally on how you look at it. I quit Uni and instead trained as an ITEC therapist, and it was while doing this that some serious research started occurring, without my looking for it. I bought an issue of Psychologies and in it was an article on power diets including a diet for falling in love under the influence of dopamine, saying that tyrosine from phenylalanine was required to manufacture this neurotransmitter. It quoted Dr. Helen Fisher (hi Helen!) and her research on dopamine levels in couples in passionate love (Why We Love is her published book mentioned). A few weeks later, browsing in the college library in the health and psychology section, I came across an article in one of the journals about high dopamine levels in cases of schizophrenia, and driving to work one night pondering this conundrum, recalled something about the psychotic episodes I had experienced since my thyroid was removed - on each occasion, I was in the middle of an unrequited crush on someone. Falling in love was pushing up my dopamine levels to something my brain couldn’t cope with. I looked this up on the internet and found a Dr. David Grandy had done research on dopamine levels and schizophrenia at OHSU. Feeling I was onto something, I emailed Dr. Fisher, and two days later, my mum handed me another article on dopamine which had something in it she hadn’t even noticed - tyrosine is also one of the components required by the body to make thyroxin in the thyroid gland, and that’s when it clicked into place. My thyroid gland had been taken out after years of making heavy demand for tyrosine to over-produce thyroxin. Suddenly, no gland - spare tyrosine. Now my body could make dopamine (and also, I learned, adrenaline) willy-nilly, more than a normal person, possibly. No wonder I had energy to go straight into a new job two weeks after surgery, getting up at hours I had never seen before and riding my motorbike 18 miles on pre-dawn ice at 7am and back through blizzards at 6pm having struggled to walk to bus stops when I was ill beforehand. No wonder I felt like I was losing my mind if I fancied a guy. Dr. Fisher confirmed that falling in love is akin to a form of mental illness at times, meaning it allows in (the chemical dopamine allows in) fantasies about the object of desire. In schizophrenia or psychosis, dopamine potentially fuels fantasies about pretty much anything focusing the sufferer’s mind or distracting them at the time. In myxoedemic (underactive thyroid) psychosis as I experienced after my thyroid was removed, the potential for dopamine to increase in response to a stimulus such as seeing a desired object, as demonstrated by Dr. Fisher in her couples tests where they were shown photographs of each other and dopamine activity in the brain monitored, is far greater possibly with tyrosine readily available from the diet that is not being used in a healthy thyroid gland. From that theory I’ve followed the practical approach. Eat less phenylalanine and tyrosine. For me it was easy enough to see where too much cheese on a pizza and animal proteins in my diet could be cut back on, and since then I’ve had fewer and less gnawing crushes on guys. In a way I sometimes miss the feeling of hopelessly deluding myself about someone and entertaining romantic notions I could only have got from a book or movie anyway, but I know I’m not missing the devastatingly agonizing disappointment that nothing ever came of them, and the withdrawal while I repair my self-esteem. I’ve come to realize that it’s possible when taking good care of myself to just quietly notice I like someone and make no song and dance about it. The other stuff that I was experiencing emotionally before when I had a crush on a guy, and I can say this honestly because none of them were requited, was only happening in my own brain - not in reality. But when I was under pressure, after surgery, falling into another crush and succumbing to dopamine was a trip switch too far without a thyroid gland or a relationship in real life to counterbalance it, and I would tip over from the crush stages of dopamine levels into the schizophrenic stages. If it is possible to manage psychological health, control of neurotransmitter/adrenaline production with the diet, this aspect of it is something that all researchers of it should take seriously, particularly when taking into account subjects with endocrine dysfunctions such as myxoedema or surgical thyroidectomy. In June 2006 I finally had the eyelid retraction corrected, and in July 2007 a bit of further eyelid tweaking, both at Moorfields. So for me the trip took about 20 odd years, and what wasn’t available in 1986 when I was 15 became available bit by bit over time as technology and medical procedures developed. Although I had to get past things like an ignorant G.P. in the beginning, to waiting for a student-friendly elderly specialist to retire, to a private surgeon who charges you for saying things to you that you’d only repeat in your suicide note, to all the times I had an unrequited crush on someone, to all the sideshows of alternative therapy en route, I met some amazing people doing amazing work - Valerie Lund, Geoffrey Rose, Dr. Hannah Hughes (my G.P. in Hastings who checked my blood every four weeks while I was pregnant to monitor my thyroxin replacement was sufficient for the baby to develop, was the first person to mention there was such a thing as latex allergy, called me in after I left her a note with symptoms on one day knowing exactly what the problem was and it was nothing I could have guessed or worked out for myself, and always had the book handy to look up something in front of you on your behalf), and lately Mr. Uddin who has stopped me staring and tidied up my eyelids. And Dr. Helen Fisher by email, without whose work I would still be crazy, in love or out of it J I just want to say to all you students out there, if you’re heading towards the kind of progress these people have made and contributed to, then being your walking textbook was worth it. (I bought a Celica and sold my Peugeot 205 on eBay. I would like to thank Peugeot for making the 1.9 205 GTi and say it was more fun than sliding down a hill in Wittersham in the snow on a tea-tray). © Lisa Scullard 29 August 2007 7.07am Lisa@screenkiss.co.uk