I first became ill when I was 20. I was at Durham University studying Physics and in February I caught flu. After a few days I remember walking into town to buy a train ticket, feeling dizzy and ill and having to return to my college. This pattern simply repeated itself.
Over the next year or so I was caught in an endless loop of seeing doctors (much of which I don’t remember) who alternately told me there was nothing wrong with me and I should return to university (which I did several times, only to be sent home again) or that there was something wrong with my heart.
My heart was tested and it was found to be doing up to 180 beats a minute during the day, so I was put on a high dose of beta blockers. My thyroid function was tested and I was told it was “at the upper limit of normal” so I was prescribed carbimazole. This did nothing. At the end of the three months I well remember my GP asking me “can you put your hand on your heart and say you feel better than you did three months ago”. I said “no”. His face fell (I can see it now) and he told me to go back to university.
I was then caught in an endless round of feeling too ill to function, being sent back to university where I could do nothing as I couldn’t even walk to lectures.
The University Medical Officer at one stage wrote to my GP and told him that there was something wrong with my heart (in bad phases it can, apparently, sound as if I have a hole in my heart) and told him to refer me to a cardiologist.
First I saw an elderly doctor from Kingston Hospital. The hospital was being rebuilt and the doctor was due to retire in the next few weeks. He came to our house, gave me a cursory examination and told me that I was suffering from “nervous exhaustion”. When I asked him what would cause that he looked at me pityingly and said “you’d have to tell me”. I well remember spending the following weekend worrying about what it was that I was worrying about, until I realised that was daft and I was making myself ill.
Then I was sent to a cardiologist at St Thomas’ Hospital. I saw him privately and he, at least, was always kind and sympathetic. Heart became the perceived perception of my problems although all ultrasound tests showed was a slightly prolapsed mitral valve.
I left university and returned to live with my parents. At that time I was too ill to do anything. I had no life – I couldn’t work, I was too ill to socialise. I was on a high dose of beta blockers, I couldn’t even go up in a lift without coming over feint and dizzy. If I “overdid” it I was left with an uncontrollable burning feeling in my chest and painful, weak legs.
For many years I slept constantly. It was usual for me to go to bed at 10.30 and sleep til 8.30. If I had a virus or had “overdone” it the previous day it was normal for me to fall asleep for 2 to 3 hours in the afternoon, after which I would wake up feeling worse than I had before going to sleep. I’d make a cup of tea and sit on the sofa for half an hour while I waited to start feeling human again.
I asked my GP if there were any side effects from beta blockers and he shouted at me “there are no side effects from these pills”.
At the age of 27 I developed abdominal pain, which the GP thought might be an ovarian cyst, so I was admitted to Kingston Hospital for an endoscopy. In a pattern to repeated down the years, the doctor listened to my heart and sent for a cardiologist. A young doctor appeared, asked me about my condition and proceeded to list all the side effects of beta blockers. The very side effects my GP assured me didn’t exist.
At that time (May 1983) we moved from Surbiton to Guildford, so I registered with a new GP. He told me that if I wanted to be his patient I had to stop seeing the cardiologist in London and see the one in Guildford (he later denied saying that).
Following the meeting with the doctor in the hospital I decided to try and wean myself of beta blockers. My new GP (the true doctor from Hell) told me that “there was nothing whatsoever the matter” with me, but at the same time told me that I wouldn’t be able to stop taking the beta blockers.
Over the next few months I stopped taking them and have never taken them again.
Once I was free of the side effects of the beta blockers I was able to consider getting my first job. It was 3 afternoons a week at a small business in our village. It paid less than I was receiving on benefits but I was living at home and was sick to death of the awful, uncaring, (so called) doctors who worked for the benefits system and the Dickensian surroundings of the benefits office in Kingston.
I managed to get some kind of social life, joining a local choir and social group. After a year in that job I moved on to one that was 5 afternoons a week. I had, by then, developed swollen ankles. “A touch of your age” was my GP from Hell’s less than helpful diagnosis.
Every GP I saw made it perfectly plain to me that they were not interested in me. I was sent to see a psychiatrist who reported that I should be told to keep away from doctors and mustn’t be allowed to use my intelligence to discuss my illness.
Traumatised, I virtually went underground. I had no way of finding out what was wrong, no way of explaining to friends/family what was wrong or how I felt. Every symptom I ever tried to raise with anyone –doctors, friends, family was simply jeered at or dismissed. I learnt to keep quiet and get on with what life I had.
Within limits little changed. I knew how much I could do and what I couldn’t do. I loved travelling. Travelling along with singing were my life. Mostly I travelled on my own or with friends, so that I could do what I could do when I was able to do it. I was never able to take part in choir tours or any travel event that involved endless visiting, walking and socialising.
A few years later I moved into a flat of my own, at the age of 32. I changed GPs. My GP there was friendly, but by then I was unable to talk about my illness and he never raised the subject. I struggled on alone. I was offered a full time job. I managed a year then went down with what my doctor described as a “glandular fever like” illness. I was sacked for being off sick.
I went back to working part-time for 4 years, whilst my mother was very ill. After she died I took another full time job. That lasted 3 months and again I was off sick with a virus and sacked.
At that point I went self-employed and have been ever since.
All this time, in my 20s and 30s, I struggled to have any kind of life. Every day after work I would come home to my flat totally exhausted. I could barely do the shopping and cleaning. I would go to choir practice once a week, go out with friends on Saturday and simply spend Sunday on the sofa in order to recover enough energy to go work on Monday.
I had no idea what was wrong so could never explain to my friends or family why I was unable to do the things they could.
The time when the difference between myself and everyone else was most obvious (to me) was after a choir concert. I could usually manage the afternoon rehearsal, concert and social activities afterwards. The following day I would be confined to bed – uncontrollable burning sensation in my chest, legs like jelly and barely able to do more than shuffle to the kitchen and back to bed. This would last a couple of days so I always booked a day off work after a concert. Of course no-one else saw any of this. I became famous for disappearing when I wasn’t “very well”. I still do.
In 1999 I moved to Herefordshire, following the death of my father. I had to have some way of explaining to the people I met why I was the way I was so I took to saying I had ME.
I registered with a local GP practice and initially it never really occurred to me to even ask them about my condition. I was so traumatised from having been shouted at, jeered at and dismissed that I didn’t even know how to talk to a doctor any more. I learnt to be careful about which symptoms I even raised.
Around the time I moved to Herefordshire it was found that I had high blood pressure. I’d been on the pill in an attempt to calm down my PMT and unbelievably heavy periods.
I carried on as usual until I approached the menopause. That was 7 years ago now. I was working part-time for a local historic house. One Wednesday I helped with the cleaning in the house in the morning and took two tours round the house in the afternoon. The next day I wasn’t well and by the following day I was confined to bed, too weak to even sit up.
The GP on duty refused to even come out and see me. I haven’t forgiven him for that and a vital opportunity for testing and diagnosis was missed.
At that time I took to the internet and, unfortunately, came across ME. The symptoms fitted so I joined a support group. At first it was a revelation to find other people with the same symptoms as I had never met anyone like me. It became clear, though, that ME support groups are just places where people exchange symptoms. There is no attempt at diagnosis or treatment. ME, I now realise, is a made up disease. The medical profession love it. It’s cheap (no treatment provided), it’s easy (no testing or proper diagnosis required) and it’s fashionable.
I recovered to an extent 7 years ago, but gradually over the following years went downhill, becoming weaker and less able to do my usual activities. Choir singing is a distant memory.
Around 3 years ago I had two viruses that left me seriously debilitated. My doctor offered to send me to the ME clinic. The, so called, specialist was friendly and totally disinterested. He wasn’t interested in the history of my illness, didn’t ask what my symptoms were, didn’t examine me, didn’t order any tests. He offered me a follow up appointment at the local ME clinic. I accepted as I felt it would be wrong to say no.
At that appointment the person I saw told me that the specialist’s letter was unsigned and all his letters were the same. I was unable to attend any further appointments as I was too ill to get there. Something that, apparently, they make no provision for. You could only get support from the ME clinic if you were well enough to attend. The service has since closed.
The last 2 years
2 years ago I decided the time had come to find out what was really wrong to me. It was clear to me that no-one had ever tried to find out the cause of my problems. As I’ve said many times, if you keep doing the same tests you will keep getting the same answers.
No-one anwhere has any idea what my symptoms are. I have never been allowed to tell them to any doctor and anything I do attempt to raise has been (and still is) systematically dismissed. Yet I’ve always believed that if someone would sit down with me and go through my symptoms in a non-judgemental way it must be possible to put them together and work out what was causing them.
By September 2 years ago I was going downhill rapidly. I was able to get out to visit a client only around once a week. I decided to take over diagnosis for myself. Not knowing where to start or what I was looking for I decided to ask for an appointment to see a cardiologist. I thought I’d go back to the beginning, only this time I’d be in control and would follow the trail to see where it led. At the same appointment with my GP I also asked for a blood test as I was getting worse.
Things then happened in quick succession. I asked for a private appointment with the cardiologist. The appointment came through in 2 weeks and during the consultation he asked me how my thyroid was. I didn’t have the results of the blood tests as the GP was on leave, so said “alright, as far as I know”.
A day or so later a client of mine rang. (I’m a web designer and computer troubleshooter). I told her I was too ill to come out. She immediately said that I must make an appointment to see Dr Peatfield, who was coming to her clinic (my client is a hypnotherapist) the following April. I’d never heard of him, but took his number and rang his secretary.
A week later the GP returned and I went to see him. By then I was confined to bed, too weak to do anything more than get up and down stairs to feed myself. I was reliant on friends to take me to appointments when necessary. He told me that he hadn’t found anything “except that your thyroid is a little underactive”.
I can’t explain it, but the instant he said that it was as if someone had turned on a switch in my head. I knew he had just given me the clue I was looking for. That same day, Dr Peatfield’s secretary rang to make an appointment for me to see him the following April (2013)
The GP refused to offer me any treatment and told me to come back for a retest in 3 months. I came home from that appointment and hit the internet. It didn’t take me long to find support forums and groups and whole wealth of information.
By the following week I was still deteriorating. Every inch of me was shaking and I rang the doctor and asked if I could start treatment. He haughtily told me that he would “be prepared to retest you in 2 months not 3”. A week later I asked a friend to take me to see him, where I totally lost it. I was so depressed I was simply hysterical. To shut me up he put me on a starting dose of thyroxine.
This was early November 2012. I soon worked out from online questionnaires and groups that my main problem was probably adrenal rather than thyroid. To the best of my knowledge my adrenals, pituitary and any other parts of my endocrine system had never been tested, yet the symptoms of unequivocal once you know what they are. The very symptoms that have been systematically dismissed, such as low body temperature, cold hands and feet, inability to recover from exercise, sensitivity to chemicals, sensitivity to light/noise, inner shaking, weakness and tiredness, back problems, swollen ankles (remember, I was told they were due to my age when I was just 30) and a whole host more.
In December I ordered a saliva cortisol test. This vital test isn’t available on the NHS. When the results came back I didn’t understand them but did start myself on some basic adrenal support. In January I returned to my GP for a retest. My regular GP had been off the previous year for family reasons, but returned after Xmas. He at least is kind and friendly. He allowed me to raise my thyroid meds.
One thing I learnt from the online forums was to always ask for print-outs of your results, so before Xmas I asked for my thyroid results, including past tests. When I got them I could see that I had been clearly hypothyroid for most of the preceding 6 years, flagged up by the lab on 2 occasions. I simply was never told.
In April I had the much awaited appointment with Dr Peatfield who put me on a more comprehensive program of adrenal support. I started to improve.
Then, In June, I re-read the report that came with my saliva cortisol test. Armed with new knowledge I had a better understanding of what was said. I decided, as advised by the practitioner through whom I ordered the test, to try taking hydrocortisone. The effect was immediate and dramatic. I wrote to Dr Peatfield and his advise was that if it was working it was ok to continue taking it. I (and many other adrenal patients) use physiological doses rather than therapeutic doses.
Also in June I asked for an aldosterone test (another adrenal test). The results appeared ok, although I now know the test wasn’t done correctly and I was taking a medication I should have been told to stop for 2 weeks. Along with that test my kidney function was also tested. As my doctor knows I now ask for all results he was unable to hide. I was in stage 3 kidney failure. When I asked for historic results it was immediately obvious on his screen that my kidney function had been below the lower limit of normal for the last 5 years. I wasn’t told.
Back to the internet, I started improving my kidney function as well as adjusting my adrenal meds with the help of Dr P.
I still have a long way to go, but I am hugely better than I was a year ago. To give you an idea of how things have changed. For my April appointment with Dr P I had to ask for a friend to drive me to Malvern. I saw him again in Sept and didn’t think twice about driving there myself.
A few weeks ago I asked to see my medical notes. My GP was helpful and, to save me the cost of print-outs (and doubtless save surgery time) he offered me the use of a room. I took my camera as I was interested in notes from the time I was first ill (1976) and around the time I first moved to Guildford. In those days, and for many patients today, the “blame the patient” culture reigned supreme.
Two things are as plain as the nose on your face:
a) I have been hypoadrenal all my adult life and probably from the age of around 10
b) Not once in all this time has any doctor anywhere expressed even a passing interest in offering me other tests or trying to find out what is actually wrong with me. (One sweetly commented when I was 27 that I had a “youthful appearance” and another volunteered that he thought I had “never grown up” and “I fear it may now be too late”.
When I first worked out was wrong I was incredibly angry that my life has been wasted. I have struggled every single day of my adult life to have any life at all. I have rarely received any help or support from anyone, anywhere.
Why are patients with adrenal problems so overlooked? I don’t know, but this video gives us clues I believe http://youtu.be/qVYIAwHukF8
The speaker is Dr Chandy, speaking at a Pernicious Anaemia conference. His subject is hypo-adrenalism. Listen to what he says at 6.13 – “we doctors are not allowed to diagnose and treat”.
They are allowed to diagnose ME/CFS and offer no treatment. They are not allowed to diagnose and treat complex endocrine problems. For some reason ME has been invented to avoid these diagnoses. I don’t know why, I know only that many people’s lives are being ruined, including children.
I feel I now know some of what is wrong with me. I know I am missing something and I am under no illusions about how much of the last 37 years’ damage I can reverse. I know the endocrine system is complex and some of it is not understood. I know that doctors blaming their patients for things they don’t understand is not and never has been helpful.
It remains to be seen how much better I can get.
Feb 28th 2014
Update – Sept 2014.
Dr Chandy – whose video I linked to above has been restricted by the GMC, who seem hell bent on stopping any doctor who wants to help patients with endocrine problems. I can only guess at the reasons why, but there have to powerful financial interests at stake as this is a regular occurrence.
My story continues. What I didn’t say above was that I crashed badly last Christmas. Testing showed my thyroid function had worsened. It coincided with Dr Peatfield being too ill to consult, but an online contact recommended another doctor, who I have now seen 3 times. With his guidance I have improved a lot more this year.
I am learning to adjust my meds for myself – upwards if I go downhill and then downwards again when I stabilise. I am gradually doing more and more.
For me, the idea that when I’m feeling ill I can take something to help has been one of the strangest things to get used to. I’m so used, from long experience, to knowing that when I’m bad all I can is rest and wait to improve. Learning that I need to get off the sofa, go into the kitchen and take something has taken time. But I’m learning and it works.