CASE STUDY: SARAH

Case Study: Sarah

If I think about the number of medical professionals that I’ve met with over the last twenty years, I simply loose count.

There are too many, in too many countries, in too many different circumstances, for me to remember. I have seen GPs, oncologists, endocrinologists, haematologists, ENT specialists, immunologists, gastroenterologists, dermatologists, gynaecologists, nutrionists, and a host of alternative therapy providers, from acupuncturists, to reiki healers.

I had been ill for as long as I can remember. When I was a kid, I would get every type of flu and stomach bug going, causing my parents to worry that something was wrong. My brother and sister would bounce around the place and I would drag myself, always lethargic.

Doctors said it was my tonsils, but taking them out didn’t really make a difference. And so I got used to be tired, and sick, and got on with my life. At the time, my symptoms did not seem so overwhelming. If I didn’t get much more sleep than my peers, I fell ill, but that was okay, I just slept a lot. My periods were a nightmare, but everyone complained about their periods, didn’t they? I had heavy bleeding, blood clots, and awful PMS. I was put on the pill at the age of 15 to try and deal with the symptoms. Nobody thought to look for a cause.

By the time I reached university, things got worse. I started to put on weight, and I started sleeping a lot more, I needed 11 or 12 hours sleep just to function. My aunt took me to see a GP at the Cromwell Hospital in London, and asked him if he could test my thyroid. He told her, and me, that I had ‘fork to mouth’ disease, and was too young to have a thyroid condition.

And so began my journey of disappointment in the medical profession. I graduated from university, and saw another GP about the crippling migraines I was having. He told me it was stress related, and that the busy newsroom environment where I was working as journalist was too much for me. Frustrated, I found a new GP, who sent me to a gynaecologist, who put me on a different pill to try and help the migraines. By then I was terribly anaemic as well, from the heavy bleeding. A haematologist got involved; I started having iron drips, but had an allergic reaction and had to stop.

The weird thing was, I had convinced myself up until this point that I just needed to toughen up, that other people must go through the same annoyances, and that they just didn’t complain as much as I did. And once again, I got on with it. I tried desperately to lose weight, but nothing seemed to help.

It was only in 2004, when I had a miscarriage and my consultant said, ‘call me if you bleed through your pad more than once an hour’ that I realised how bad a problem I had. I told the consultant, “I bleed through more than one pad every half an hour in a normal period.” He looked at me strangely, and then said, “Oh, we’d better change your pill then.”

And so life continued once again. I ignored the fact that I got my periods every two weeks or so, or that they went on regardless for a month or two sometimes. I went on to have a healthy child, and of course then I had an excuse for the complete and utter fatigue I seemed to be going through. I tried to ignore the niggling health things, but had hurt my back during labour, and so started seeing various experts for various issues. My sugar was slightly on the high side of normal, but my GP felt that, given me weight gain; and a strong family history of diabetes, I ought to see an endocrinologist.

I went to see a leading professor of endocrinology in Harley Street who told me I was Vitamin D deficient but never tested my thyroid. So then I thought, maybe all this fuss is just a lack of vitamins. Maybe that’s why I’m so tired I can barely keep my eyes open.

A few months later, I woke up and noticed a swelling in the left side of my neck. I went to my GP, who told me my glands were raised. By then, I’d been around the block enough to realise that the only one who was going to fight for my health was me. And so I demanded a scan of my neck. The GP felt that wasn’t necessary, but I insisted. The scan revealed that I had multi-nodular goitres on my thyroid. I had Hashimoto’s Disease, an autoimmune disease of the thyroid. How long had I had it for? Who knows?

It took me a long time to get on top of the fatigue, but at least I was being treated now. I was exercising as much as I could, working with a personal trainer, getting acupuncture as well. But I never seemed to be able to get on top of my health. By this time, I had changed endocrinologists, and I had read somewhere that many thyroid patients felt better with both T4, and the more active T3. I asked my new consultant about it, and he told me that I should consider the fact that I had depression.

I learnt later, purely by coincidence, that he went on to give a speech about ‘middle aged hysterical women with depression who want T3 because they’ve spent too much time on the internet.’ I was only 34 at the time, and I felt completely abandoned by the medical profession. I did actually take his advice and see a psychologist, largely because I had started having panic attacks. She told me what I was going through was medical, and probably thyroid related, and not mental health related, and sent me back to my GP. I gave up entirely on endocrinologists.

The good news was that my new GP, a rather lovely woman, sent me to a holistic specialist, who gave me a T3/T4 pill and I started to feel a lot better. I still had many issues though. I had chronic, extremely painful sinusitis, the anaemia was still a big problem, and I developed actinic lichen planus on my forehead and had to have a biopsy to make sure it wasn’t serious. I was then diagnosed with polycystic ovary syndrome, insulin resistance, polymorphic light eruption (a fancy word for an allergic reaction to the sun), arthritis, and calcific tendonitis. I couldn’t even pronounce these illnesses, let alone understand them. I had been in hospital three times in 2013, twice for procedures to clear out my uterus, and once with suspected appendicitis that the doctors never really could explain.

And each time, in the process, I had to explain to one or another consultant that I was not, in fact, depressed. My personal life was great, I was happily married, I had a beautiful son and a career I enjoyed. I still do.

In 2014, I started feeling twinges in my neck. I ignored them for some months, but then went to see my GP, feeling embarrassed when she opened my file – it was the size of an encyclopaedia – to tell her I’d like another neck scan. I hadn’t had one since 2008, and I felt that it was time to see how the thyroid was doing. She agreed, and sent me off.

I went by myself, and was startled when the consultant doing the scan told me that I needed a thyroid biopsy because of a large, 3cm node. She did the biopsy there and then, just to be careful. A week later, my GP phoned and said that the biopsy had come back Thy3, which meant that it was on the borderline of whether it could be cancerous or not. I would need to have half my thyroid removed, so they could make sure that it wasn’t cancer. Everyone was reasonably comfortable in saying that it wasn’t cancer. The first surgeon I saw, in fact, said, ‘100% it’s not cancer.’

A few weeks later I learnt that I did, in fact, have papillary thyroid cancer with a follicular variant. I spiralled into anxiety. I felt like I had been kicking the doors of the medical profession for years, and that nobody had listened, and now here I was, coping with cancer. Cancer is a big word. It’s a scary word. And I was terrified.

Little did I know how significant that first meeting would be when I met Dr O’Flynn, a GP in London who works with Chronic illnesses. I saw him on the advice of a friend.  He was so immediately reassuring that I felt better. But I also wondered if I had entered a parallel universe. Dr O’Flynn didn’t ask me about the cancer. Instead, he asked me if my ears were ever itchy (they were), and if I bloated after I ate (I did). He asked me about abdominal aches and pains, about diahorrea, anxiety, skin rashes, headaches, and a host of other things. But not about cancer.

Dr O’Flynn went back to the very beginning, to my childhood, looking at the illnesses I had had as a child. He tested me for every parasite and every stomach ailment there was, and then told me about how fasting could help me with many of my problems – once the cancer was out of the way. He calmed me down when I was hysterical about the big C, and told me that we would take things once step at a time. While various cancer pathologies were coming back with conflicting results, Dr O’Flynn suggested I start doing an urban cleanse to give my small intestine a break.

I learnt that our small intestines are host to 40% of our immune cells, and that this has implications for people with auto-immune disease. Different food molecules affect our small intestines in different ways. Food passes through the microvilli - the hairy guardians - of the intestine and is broken down, changing shape, and is then allowed to pass through. But for many of us, particularly those with endocrine problems, the tight junctions of our intestinal cells have come slightly apart, allowing fragments of food molecules, such as gluten, to go through to our underlying tissue, inciting our immune cells to react. That ‘leaky gut’, releases cytokines, and interleukins, and can cause depression, fatigue, skin rashes, anxiety, bloating, headache, diarrhoea, aches and pains, constipation, autoimmune issues, and allergic reactions over time.

Dr O’Flynn suggested that I limit my diet to avocados, white fish, eggs, fruit, olive oil, potatoes, and salt and pepper, and herbal teas, for two weeks. It was the most miserable two weeks of my life, but I stuck to his diet. I felt horrible for two days, and then immediately better, loads better in fact. Better than I had in a long time, with lots more energy. My skin was glowing too, and I started to lose weight.

But then I had to have a second surgery for the thyroid cancer. And after that surgery, I felt like I took ages to bounce back again. I was tired again, falling ill again, and frustrated again. Dr O’Flynn invited me to join him in Brazil, on his fasting holiday. I told a friend of mine: “that’s nuts, imagine someone wanting to do something like that’.

But as time went on, I had more and more issues. I did the urban cleanse a couple of times, but I couldn’t keep it up indefinitely, and felt worse when I started eating ‘normally’. So I decided I needed to try fasting in Brazil.

My decision was met with incredulity by my husband, a scientist, who used to work for the NHS and believes strong in evidence-based medicine. As far as he could make out, there was no reason why fasting would make anything better. My mother had no expectations either, but was so desperate to see me well that she, and the rest of the family, wished me well.

As for me, I was just fed up, and ready for a change. I told myself, this is the last thing I’ll ever do. And if it doesn’t work, I’m turning my back on all of this.  I understood the rationale for the trip.  By fasting for a week or more, we ‘dial down the noise’ in the immune system, allowing it to recover, and over time to re-set.

But to just drink coconut water for 8 days, and only have miso soup in the evenings? I am someone who loves food. I emphasise that because it’s important. I have a love affair with good food. And yet here I was, preparing for eight days without it. The night before we left, I ate the biggest ribeye I could order, with a large portion of chips.

And then I met Dr O’Flynn, and the five other participants in the cleanse - one of whom is a dear friend of mine - and we got on a plane. We fly overnight on British Airways from London to Sao Paulo. I had packed a bag full of snacks, and then cursed myself because I didn’t really eat any of them. Once we landed, the fast would start, and so I left my snacks reluctantly on the plane.

In Sao Paulo, Dr O’Flynn bought us all a carton of coconut water, and gave us some salt. We all looked at each food stall we passed on the way to our next connecting flight with mounting anxiety. But we stuck to the coconut water. From Sao Paulo we flew to Belo Horizonte, and from there, it was another plane ride to Teixeira de Freitas, a tiny airport where your suitcases were pushed through a square slot in the wall on arrival. After that, it is a bumpy, two hour drive to our final destination – the village of Cumuruxatiba, in the state of Bahia.

We were exhausted, having been travelling for nearly 24 hours. But then we realised that we had fasted for the whole first day, and it hadn’t been a hardship. The distraction of travel helped a great deal. The minute we had the sun on our faces, we felt something start to shift. We were here, a world away from the one we knew, and we had nothing to do and nobody to worry about. We could relax. The views were stunning. We passed thick green foliage and forests of eucalyptus trees. I saw my first cocoa plant.

We arrived at Dr O’Flynn’s house in the late afternoon, happily settling into comfortable rooms with en suite bathrooms. We were on a hill, overlooking the ocean. There was a swimming pool, and a Jacuzzi, an acupuncture room, a massage area, and much more. Better than all of that, our miso soup actually was quite hearty, with real vegetables in it. We had our soup, and then all collapsed into bed at eight pm.

The next day we gathered, bleary eyed, at six in the morning, and drank coconut water. Dr O’Flynn told us that the day was now ours. We needed to aim to do four hours of exercise in the day, but how we did that was up to us. We could swim, cycle, walk, or do pilates. Later we would be paddle boarding as well. We started by heading down the hill to the ocean. It was steep, and we were all aware that we’d be huffing our way back up soon enough.

The beach took my breath away. It looked like something out of a movie – still and clear skies, white sand, palm trees swaying in the wind, and absolutely nobody around for miles and miles. There was a 4km stretch of beach to walk on before anything obstructed the path. The others went for a run. I did some yoga and swam in the calm waters. Then it was time to go back up to the house, where two wonderful masseuses were waiting, ready to provide a variety of different massages, as well as reflexology and reiki. I had never had reflexology before, and I was stunned at how relaxed I felt afterwards. I went for a bike ride, and collapsed in a hammock with a book.

That first and second day, I gulped down the coconut water like nobody’s business. I felt tired, and I worried that I wasn’t feeling any better. By day three, I was drinking less coconut water, and I was enjoying myself immensely. But I was still tired. I noticed though, that the others started to pick up the pace. They were waking up earlier, going for longer runs, and definitely looked better.

The weird thing was that I never really felt hungry. It was more like an absence of feeling full. I realised how many times I eat more than I should, just because I like the feeling of fullness. Drat, I thought. Dr O’Flynn was converting me to his way of thinking. The cult of the coconut. But it was true that the nutrients in the coconut kept us all from feeling like we were starving.

The days stretched, long and languorous. We went whale watching,  and off in boats to some of the most beautiful strips of beaches I have ever been to, as well as to a lake at the edge of the rainforest. I unfortunately had picked up a tummy bug, which gave me a couple of difficult moments. But I was really enjoying myself, and not thinking about food. This was a ‘cleanscation’ as Dr O’Flynn jokingly called it. Interestingly, my polymorphic light eruption- a horrible painful rash I get in the sun – started appearing on the second day of our trip, but vanished on the third day. Normally, it would grow worse and worse.

By day six, I felt a shift. I felt… lighter. It wasn’t just that I had lost 11 pounds, though that was great, of course. I just felt more clarity, and my energy came back. I felt like my mind and my body were on the same page, for the first time in many, many years. Someone pointed out that I had swum two miles that day. I couldn’t believe it. For me, that was a lot of exercise. I was actually sad when the cleanse finished. I could see myself doing a few more days, of getting even more out of it.

We came back to London, and I waited for the feeling to go away. It didn’t. Better than that, my blood tests came back.  I’m no longer anaemic, and my liver enzymes, which had been raised for many years, are now normal. My red blood cells, which have always been too small, are suddenly a regular size. My ESR – which measures the inflammation in my body – has gone down considerably. I went to see my gynaecologist to talk about how we could control the fact that my endometrium lining is around 2.5cm, (or was when I first saw her) when an average woman has a lining of 0mm to 10mm. We agreed that I probably need a hysterectomy.

Then my gynaecologist scanned my lining. It was only 5mm. She was amazed. It was, she suggested, probably because in ‘starvation’ mode, my body chose to focus on survival, rather than creating problems elsewhere. My blood sugar had also come back normal, meaning I was able to give up Glucophage, a Metformin tablet that I had been taking for some years.

I felt great. I had forgotten what it was like to have energy. My sceptical husband was also shocked by the difference in me, and conceded that the fast had clearly changed things. Last week, I went for a ten mile walk around London. A month ago, I would have barely managed one.

I can’t say whether this experience will last. I can’t say whether I’ll go back to feeling horrible in a few months’ time. Dr O’Flynn believes that as long as I ‘reboot’ once in a while with another fast, things should continue to go well. And weirdly, the idea of rebooting with another fast does not fill me with horror.

I can only speak of my experience up until today, five weeks after our fast, but I feel a billion times better. There are still health issues that need resolving – the fast cannot cure me of everything. But I feel stronger, healthier, and renewed. And I think as someone with chronic health problems, that’s a true blessing to have.