Where do I start?
I was a normal, healthy child, apart from the usual measles, mumps, chickenpox, German measles, although I was an only child having to contend with a physically and emotionally absent father and a physically and emotionally abusive mother.
In the summer of my seventeenth year, I caught glandular fever. I was off school for six months and somehow never quite the same again. I always seemed to get tired quicker than most of my contemporaries and I had my first panic attack shortly afterwards. That began an on/off relationship with anti-depressants and tranquillisers that lasted many years and made absolutely no difference to the way I felt. I went on the Pill when I was 19 and for the next seven years was backwards and forwards to the doctor. Diagnoses varied; anxiety, depression, an unspecified liver problem, undulant fever (that was one of the best). In the middle of this period I caught campylobacter and was ill for three months. The symptoms didn’t go away and eventually I was told I had IBS. By this stage I had had constant diarrhoea for nearly a year and weighed a little over 6 stone. When I came off the Pill, most of my ongoing vague symptoms resolved within about two weeks, but I still struggled, especially with muscle and joint pains and feeling cold, even in the summer.
From 1987 to 1997 I endured a period of extreme stress (Prince Charming turned out to be a depressive, violent and abusive alcoholic and addict). I kept going during those years (somehow) and when it was finally all over I collapsed completely. I rebuilt myself over the next 18 months and from 1999 to 2004 was relatively well. Then it all fell apart again, possibly because I re-married and finally felt safe and could relax.
In the summer of 2004, I started to feel pain in my right elbow. My husband, who is a sports therapist, referred me to a physio friend of his, who told me I was recovering from a frozen shoulder. She gave me exercises to do, which made no difference. In the autumn, by which time my arm was virtually useless, I went to see my GP, who immediately diagnosed rheumatoid arthritis and sent me for a blood test to confirm her diagnosis. The blood test came back negative, so she diagnosed me with osteo-arthritis and later with psoriatic arthritis. She then referred me to a rheumatologist. At the first appointment he diagnosed me with a rotator cuff injury and referred me to the NHS physios. They too gave me exercises to do, but these made my arm a lot worse so that I was in constant pain. When I told them this, they declined to see me until I had seen the consultant again, but when I did see him, he had seen my x-rays by then and simply discharged me saying there was nothing wrong with me. By this time I was in so much pain all the time that I found it difficult sometimes to sit upright. However, I had been told there was nothing wrong, so I struggled on.
By now it was 2005. I had been admitted to hospital just before Christmas 2004 with severe abdominal pain. I was scanned and diagnosed with a urinary tract infection evidenced by blood in my urine. I was given anti-biotics, but within 24 hours of starting to take them, I was covered from head to foot in an itchy rash. I went to my GP, who said I should stop taking them, and anyway I did not need them as my test results were back from the hospital and I had neither blood in my urine, nor any infection. Later in the year I had cystitis, an ear infection and a skin infection in fairly short sequence, and showed an atopic allergic reaction to each of the antibiotics prescribed.
I was also suffering regularly from herpetic infections in my mouth, the like of which my dentist had never seen before, and for which there was apparently no treatment. That situation was then compounded by the development of an infection under a molar. My dentist had no idea what to prescribe, as I had reacted so badly to all the common antibiotics I had been prescribed in the recent past and my GP said he couldn’t help. I paid to see a dermatologist who made me lots of promises that he did not fulfil and then saw his registrar on the NHS. She totally failed to grasp that I had by that time had a dental infection for three months that I could not get treated. In the end I did my own research and paid privately again to see a consultant allergist at the other end of the country. He challenge tested me and found an anti-biotic that I could take without mishap, but by that time I had had the original infection for six months.
We were now into 2006 and I was clearly not well. I was suffering a lot of muscle and joint pain and cramp in my feet, which struck without warning and immobilised me, several times a day. My arm was still extremely painful and the lack of movement meant that I was unable to hang out washing, change a bed, blow dry my hair, push a shopping trolley or carry almost anything. In fact there were a lot of day to day things that I was finding I could not do. I was also having major sleep problems. I would come home from work exhausted and be asleep on the sofa by 8.30pm. I would then wake up and go to bed, go out like a light again, but wake between 2.30am and 4.00am and be unable to go back to sleep, so I was permanently fatigued and woolly headed.
I kept going back to my GP with my various symptoms, but she dismissed these as being caused by the menopause and simply offered me HRT, which I was not prepared to accept, given my previous issues with hormonal contraception.
2007 and 2008 passed in much the same way, although I was clearly getting worse. In 2007 I had a respiratory virus that put me in bed for two weeks and off work for four and in 2008 I had a really nasty stomach bug that lasted a week, although to my surprise, I lost no weight. By this stage I was suffering quite severely with all over muscle and joint pain, as well as sleep disturbances and exhaustion. The position was complicated by the fact that my dentist had omitted to tell me that one of my wisdom teeth was rotting and had been for a couple of years. The episodes of intense facial pain that I was getting were initially diagnosed as stroke and then as tri-geminal neuralgia and I was put on anti-convulsants, ostensibly for the rest of my life. I was unable to find a dose that relieved the pain without knocking me out, but luckily the dentist then came clean about the tooth and removed it, so I could come off the medication.
I changed jobs at the beginning of 2008. My plan then was to try and sort myself out and I thought walking to work and back was going to be the way to increase my fitness levels. Unfortunately, although I was looking forward to being fitter and shaving seconds, if not minutes, off the time for the walk, this did not happen. Instead, the walk became more of a struggle every day and within a few months my husband was taking me and collecting me in the car. Neither of us could understand how I could perform the same activity five days a week and not find it getting easier. I struggled on.
In March 2009, I treated myself to a day at Crufts, the highspot of my year. By lunchtime I was exhausted. I found a chair, sat down and immediately went to sleep. When I woke I was disoriented and didn’t know at first how I was going to get home. When I got home I went to bed. I got up the next morning and went to work, but I felt absolutely awful and completely exhausted. We were out that night at a social event that had been in the diary for months, but I had to come home after an hour or so, in a taxi – I don’t think I could have driven – simply because the pain in my legs was so much that I just could not stand. At that point I realised that I was dealing with something other than getting old (I was 53) and I made an appointment to see my GP again.
This time she did a round of blood tests and said she would test my thyroid. That was the first time anyone had mentioned thyroid in connection with my health issues, so I went on the internet to find out about it and that’s when I found the first of my forums. By the time I went back to get the results I knew that I was entitled to the figures and the reference ranges, so at that appointment I was able to find out that my TSH was 2.5 (0.35-6) and my ferritin was 18(15-350). I was reassured that both were ‘normal’ and no action was required, but I already knew that this was not correct.
Convinced by my list of symptoms and, perhaps more importantly, physical signs, I pushed for a referral for an endocrinologist and the GP agreed, speculating that there might be some sort of endocrine element to my “tiredness”.
I then had fourteen appointments with our local endos over a four year period, but they seemed unable to help, even though my test results consistently showed that my ferritin levels were at the bottom of the range, as was my vitamin D, and I was clearly hypothyroid. I was told at my first appointment that there was nothing hormonally wrong with me and, after tests for diabetes came back negative, I was told at my second appointment that I had CFS and a sleep disorder – and discharged. To this day, four years later, this is the only diagnosis I have ever had.
I then had a full thyroid screen done privately, which showed I was sub-clinically hypothyroid and sent this to the endocrinologist, asking him, basically, what he proposed to do about it. He referred me to one of his colleagues, who he described as “another thyroid specialist” [sic]. I only saw this guy three times, spread over the four years, but he was the only one who had even a clue what was happening to me. The rest of the time I saw locums and registrars with specialities in diabetes or PCOS, who openly admitted they could not interpret my test results. They could not explain my symptoms or offer a diagnosis.
Alongside this, I had been tested for vitamin B12 and folate and vitamin D. My initial vitamin D result was 10 (>50), my B12 started out low in range and folate was bouncing around all over the place. I read and researched all of these issues and started taking supplements as well as adrenal support. I took the adrenal support for two years and it made more difference than I could have expected.
Meanwhile, I continued to go to the hospital, nominally every three months.
In the summer of 2010, I managed to persuade a locum consultant that I should have a trial of thyroxine. He prescribed 25mcg, which I now know is not enough to make any difference. It didn’t. My GP would not increase the dose because it had been prescribed by the hospital and it was not possible to communicate with the hospital between appointments. After 5 weeks I stopped taking it. I was unsure whether I should stop it, but on 25 mcg I simply could not function and no-one could tell me what to do.
At my next appointment, I was told that if I did not feel better on thryoxine I definitely did not have a thyroid problem and at the appointment after that, yet another doctor offered me a 5 day trial of 5mcg of T3. This was December 2010. Thanks to two prescribing or dispensing errors, I finished up with enough T3 to keep taking it. The difference was almost immediate and an increase in dose to 10mcg brought more benefits. A further increase to 15mcg in March 2011 and I was growing hair and eyebrows, I had reached my target weight without changing my diet, I was sleeping through the night and had picked up the threads of my social life.
I upped my T3 to 20 mcg, and then to 30mcg and managed to stay reasonably well, although my weight was increasing steadily. I got up to 40mcg and my hair started to fall out in handfuls. By August I knew I was in trouble again. I reduced to 30mcg until I could see the consultant again. I saw a registrar in November, who insisted, despite my test results, that on 30mcg I must be hyper and instructed me to reduce to 20mcg forthwith or risk heart and bone damage. He also insisted that I should take my meds before my next blood test. I gave it two weeks, during which a load more symptoms returned and I put on another 4lbs. I complained to the Clinical Director who told me to go back to 30mcg.
In the course of that exchange of e mails the Clinical Director confirmed that I should take my meds before my blood tests to avoid a false low result. At that point I realised I would unlikely to get well under what passed for the care of him and his team.
In the end I was instructed to come off T3 because of ‘pressure on my liver’. To be honest I was glad to see the back of it. By that stage I was three stone heavier than when I started and I had lost half my hair. Let’s just say my daughter’s wedding photographs will never see the light of day. I was a size 18 instead of a 10/12 with tufts of Brillo pad hair – and I had to face my ex, who I hadn’t seen for years, looking like that.
I went back to the hospital for my next appointment expecting that we now had baseline figures and I would be treated properly. Unfortunately, although my TSH was 4.2(0.35-6), my FT4 was 10 (9-26) and my FT3 was 3.8(2.8-7), I was told that all was ‘normal’, I was not hypothyroid, I had never been hypothyroid and I had been treated in error for the previous two years.
I stood my ground and he agreed to re-test in three months. There was little change. He then agreed to some other tests, including IGF-1, which came back low in range, and SHBG, which was also out of kilter, but in the end he discharged me back to my GP saying there was no endocrine reason for my symptoms, but suggesting he might like to try me on T3 again!
I went to see my GP with a bundle of research and references that people on forums had provided and argued that I had never had a proper replacement dose of thyroxine and, as it was cheap, that would be the place to start. Amazingly, he agreed to this and started me on 75mcg. Twelve months later and I am now stable on 125mcg. The GP and I are now at odds because my TSH is suppressed and it makes him nervous, but before the last increase my FT4 was only 14.1(9-26), and I have no signs or symptoms of over-replacement.
What I do have is a weight loss of 20lbs without really trying, which is enough to bring my BMI down from almost obese to just inside the normal range. I am now a size 12/14. Along with this my hairdresser says I now have more hair than she’s ever known and my dentist says I can now go longer than 3 months between appointments because my chronic gum disease, which I have had since I was a teenager, appears to be reversing itself. My tachycardia, which was one of the reasons for the original endo referral but was always completely ignored by them, has gone, and my blood pressure has risen to a normal level. I sleep very well and wake refreshed, I have not had a panic attack for months and, amazingly, there are even signs that my libido may be returning after an absence of nearly ten years.
I am satisfied that if I had accepted the diagnosis of CFS in February 2010, when I was chronically fatigued because I had already had six years of interrupted sleep, I would now be disabled and pretty much housebound. When my iron levels were very low, I could not walk 200m on level ground without becoming breathless and climbing stairs was almost out of the question. Also my cognitive function was so poor that I was becoming nervous of going out alone after I had got lost a couple of times, both in areas that I knew very well. I just needed someone to go through everything methodically and fix what was wrong, but in the end there was no-one to do that – except me.
It’s been a long and difficult road, but the thing I carry away with me and which has probably affected me the most, is the fact that when the chips are down, you cannot rely on the NHS to get you well.