When doctors are wrong
By Jon
My girlfriend sat on the bed as I told her, “Our children are in heaven waiting to be born.” She shed a tear and said, “Thats very emotional.”
It didn’t make any difference, the girl I thought I was going to marry didn’t stay. How could we ever have children if we never, or rarely, had sex? It wasn’t always like that. I’d once had a potent, imaginative libido. But something, slowly but dramatically, had changed. Neither of us knew what that was, although clearly she thought the worst , that I either didn’t love or fancy her any more.
That was back in 1997. I had no idea what a long and arduous journey lay ahead for me.
Over the next four years I made numerous trips to my GP. Almost 100 pages of notes were collected, from my various consultations with medical specialists. Apparently, nothing serious was found. A lump rapidly grew in my right breast, then went away and reappeared in my left breast. “Ignore it,” advised one GP. I had mountainous acne on my back, joint pains, snoring, depression, apathy, fatigue, even strange out-of-body experiences.
My freelance business as a journalist and film producer, previously successful, ran to the ground. On the days I made it to my office, often late and exhausted, I rarely did much.
Taking my golden retriever on a walk with my sister one day, I remarked that the shoes I’d bought last year didn’t fit me any more. “That’s strange,” she said. Later she was to tell me that she’d always remember the exact time and place I made that comment. What a pity neither of us realised its significance at the time, and I never thought to mention it to a doctor.
Eventually, increasingly demanding to know answers, I asked my GP for hormone tests. “The results are all normal,” said the receptionist when I phoned. About to put down the phone, the receptionist exclaimed, “Hold on, I forgot to turn the page. Your serum testosterone is low, 5.1 nmol/l on a normal scale of 10 to 30.”
No eyebrows raised by my GP. “That might be normal for you,” he said. “Come back and see me in a year.”
I persisted and saw the senior partner. He sent me to a local endocrinologist, who discovered a “benign” tumour of my pituitary gland. He diagnosed it as “non-functioning”, which at the time didn’t sound particularly serious.
It wasn’t until several months later, when my endocrinologist was on holiday, that I decided to put on my Sherlock Holmes hat (which, of course, didn’t fit me any more). My endocrinologist had belatedly ordered special tests to measure growth hormones. I obtained the results and made an appointment with a pituitary specialist in London, Professor John Monson at St Barts. He confirmed what by then I had already worked out for myself.
I had Acromegaly. A serious, potentially life-shortening tumour of the pituitary gland. Hardly “non-functioning”, it was gushing masses of excess growth hormone all around my body and causing havoc with other hormones too. No wonder I felt unwell.
My problems with doctors, however, were not over. Far from it. Far worse was to come.
Along with my tongue, colon, shoe size, etc, my prostate had enlarged because of the excess growth hormone. (But not my private parts I hasten to add , and I only mention that because everyone asks, or quite obviously, wants to ask. My private parts didn’t grow, but then, I’d have to say, they didn’t need to either).
The local urologist looked solemn.”You’ll need an emergency TURP operation,” he said. That stands for a ” transurethral resection of the prostate ” an operation usually carried out on men at least 25 years older than me to reduce prostate size. “The operation will make you infertile and possibly impotent. If you want to have children, we’ll have to check your sperm so you can arrange to have some frozen and stored.”
I went to my local hospital. A young female nurse greeted me. “How can I help you?” she asked. I replied quite matter of factly. “I’ve come to have my sperm checked.” She looked up and said, “Ok, did you bring a sample with you?” I felt myself turning red and the words just tumbled out. “Er no, I thought I was going to do that here.”
Now the nurse turned a bright pink. You can’t do it here, she whispered. “We dont have the facilities. Can I get a nurse to give you some advice?” I wasn’t going to admit to requiring advice from a nurse on how to provide a sample of sperm, so I declined her offer. She called for one anyway.
As I sat in the waiting room, a male nurse came to talk with me. “I understand you need some advice about providing sperm, he said. Well, no, not rea..- I spluttered, as he continued, “Well, the thing is you have come to the wrong hospital. You really need to go to St Albans hospital. And let me give you some advice,” he continued. “When you get there, don’t bother to put any money in the parking meter, because you’ll only be a couple of minutes.”
I decided to seek out a second opinion, from urologist Mark Emberton of London Urology Associates. His advice? I didn’t need a TURP operation after all, and the alarming information I’d been given that without the op I’d end up as a casualty emergency within weeks was, frankly, wrong. Eight years later his advice still stands.
But that medical saga was a stroll in paradise compared to the horrendous events that followed later between me, a top London pituitary surgeon and a Bristol charity for pituitary patients.
Fortunately, in my 20s, I was wise enough to take out income protection insurance in case illness prevented me from working. I advise all the self-employed to take out such insurance. After my diagnosis with acromegaly, which was clearly symptomatic enough to prevent me working, my insurers required supporting evidence. For this they contacted a London pituitary surgeon who I had consulted but who didn’t in the end operate on me.
But this surgeon wanted to tell my insurers that, “for the most part acromegaly is relatively symptom free… “. He didn’t advise that I had any specific symptoms, only that the condition “predisposes” to medical problems related to hypertension, heart disease, colonic cancer and diabetes mellitus. There could also be thyroid and partial adrenal dysfunction and these factors might well result in fatigue and anxiety. He also reported that I was running a TV production company, even though I had told him my business hadn’t functioned properly or earned anything for four years because I felt so unwell. His proposed report to my insurers had the potential to impoverish me. When I complained he replied, “I can only write what I hold to be true.”
Fortunately, other more specialist doctors were able to report that my classical symptoms of acromegaly were definitely debilitating enough to prevent me working. My insurance claim was subsequently accepted.
Some six years later, however, I wrote a story about living with acromegaly. On reading it, the London pituitary surgeon wrote to me again repeating his earlier opinion, but this time in more strident terms:
“I still would maintain that for the majority of patients, perhaps over 90%, acromegaly is relatively symptom-free bar sweating, snoring, sleep apnoea and carpal tunnel. Your case remains extremely unusual and I think I have over 300 patients on my personal database of acromegaly surgery, so I have a lot of experience.”
I was aghast. By then I’d become an expert and knew that the condition was far from being “relatively symptom-free”.
The surgeon was , and still is, a member of the medical committee for the Bristol based Pituitary Foundation, of which I was a subscribed member and supporter. I had also raised thousands for the charity. The charity’s boss didn’t want to broach the subject with their doctor, as I suggested. Even though, as I pointed out to her, their doctor’s opinion was clearly at odds with the charity’s literature about acromegaly, which contained a long list of incapacitating symptoms.
She did, however, encourage me to start a discussion about the issue on the charity’s internet forum. She wrote to me, “I don’t censor the forum” it is there for you. If you wish to start a discussion, please do. That will be interesting too!”
But when I started a discussion, which received 100% support from patients that the surgeon’s opinion was incorrect, the charity censored it and banned me from ever posting again.
Worse was to come.
I learnt that the charity was distributing “secret” emails with untrue and unkind comments about me. I needed to know more.
Through a Data Protection Act request, I asked to see all the data that the charity had processed about me. When the charity refused, I complained to the Information Commissioner’s Office. They found in my favour and urged the charity to release its data to me, even though the charity insisted that there was no more data to provide me. I persisted, and in the end, a box of almost 400 documents arrived on my doorstep.
It was a huge shock. The documents revealed that my suspicions were correct: the charity had been distributing “secret” emails with unkind and untrue statements about me. It seemed as if the charity had started a personal campaign against me. Their emails requested that all the charity’s staff, doctors, trustees and volunteers shouldn’t communicate with me and alleged I was responsible for writing inaccurate information. One email described me as, “The master of misleading information” and claimed I had broken the code of the Press Complaints Commission.
I have always prided myself as being a truthful and honest reporter of facts and once won an award for my medical journalism. For over three years, I have been fighting to clear my name. On top of the debilitating symptoms of acromegaly, this has been extremely tough.
The Pituitary Foundation has declined all my offers to enter discussions or mediation to try and resolve my complaints against them. The Information Commissioner’s Office assessed that there was a “strong indication” that the charity broke data privacy laws against me. But, still, the Pituitary Foundation has refused to mediate.
I complained to The Charity Commission, who recommended mediation, but still the Pituitary Foundation refused. The dispute, now entering its fourth year, seems to have no resolution in sight.
All this seems a far cry from that emotional discussion with my ex-girlfriend, all those years ago, about the children in heaven waiting to be born. What wasn’t to be, wasn’t to be. So far I’ve lost my career and my dream of being a family guy. But I’ll never be a victim and I still have hope for the future. By speaking up about what happened to me, I’m also hopeful that other patients can learn from my experience. Most important of all, I’m hopeful that more doctors will understand the need to listen to their patients. And of course, I hope that one charity in particular will learn that patients with something to say should be heard and cherished, not punished and ostracised.
Copyright Jon 2011