Autoimmune Thyroid Disease

An Unfortunate and Lengthy Adventure in Misdiagnosis

Atkins changed my life

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The obligatory before and after pictures…

In Amsterdam 3 In Nice, France
Before (grotesque in Amsterdam), August 2003, at 10st7lbs After (smug in Nice), January 2004, at 8st7lbs

August 15th 2003 I made a decision that I will never regret. I started doing Atkins. I didn’t do Atkins because I was overweight (though I was). I went on Atkins because I thought had found The Answer.

The Question was this: what the hell is wrong with me?

Eight months prior to making my decision I went into hospital with Deep Vein Thrombosis. I had a blood clot running from my left calf all the way up to my hip. I’d been on the third generation pill, and under extreme pressure at work. A whole combination of factors came together and acted to push my body over the edge.

In hospital I was put on heparin shots and warfarin tablets to thin my blood. The first time I really noticed The Problem was when I was waiting for breakfast one morning and I felt so weak and shaky I could barely stand. I asked the nurse to measure my blood pressure, which was fine. She asked me if I wanted to take a diabetes test, and I laughed and said no thanks, I’d be okay.

The thing about hospital food is, hospital dieticians are labouring under forty years of nutritional misinformation: they’re desperate to keep salt out of hospital food, they’re also desperate to keep fat out of it, but they will quite happily let you eat all the additives and fruit and pasta you want, followed by a huge slice of cake and custard for dessert every night. Being a vegetarian at the time, I was probably eating a diet of around 65% carbohydrate (I was addicted to breakfast cereal). A lot of the carbohydrate was in the form of simple sugars and starches – mashed potato, pasta, fruit juice, biscuits, cake, and so on.

This wasn’t the first time I’d had a funny turn like this – in fact it had been a regular occurrence for many years. If I had to leave the house without having breakfast, by the time I got to McDonalds (yes, this is how well I ate) to get a McMuffin in town, I’d feel like I was going to faint. I really think I’d had a problem for a long time, but it wasn’t a big problem. I really noticed it when I was in hospital, and I wondered if the drugs were putting a lot of extra strain on my liver. I noted in my diary at the time that the warfarin seemed to be making me hypoglycaemic.

In the months after I came out of hospital, something awful started happening to me. I blamed it on hormones – having come off the pill I was bound to be a bit emotional, and apparently it takes six months to get the body ticking over again properly. But it was around the fourth or fifth month mark that I began to wonder if something was really going wrong. I was irritable all of the time, exhausted, weak, and if I didn’t eat at exactly the same time every day I’d be so faint and shaky I could barely stand. I was turning into such a bitch. I could hear myself becoming another person: panicking about nothing, making mountains out of molehills, giving people shit all of the time. I was constantly indecisive and confused, had unexplainable migraines, and every single afternoon I’d fall into a confused trance, slurring my words like a drunk and staring at the computer screen unable to make sense of code or text and just waiting for the time to pass so I could go home and get some dinner. It was like I had adult attention deficit disorder.

The thing is, I’d be fine for a couple of hours after I’d eaten. Then I’d get hungry and irritable again, and sometimes I’d feel so terrible I’d find a quiet room and just go in there to cry. I’d never been a well person. For most of my life I’d suffered from fibromyalgia, though by my mid twenties I thought I’d had it under control and I was as well as I was going to get. But my fibromyalgia seemed to have come back strong. My back always hurt. I always felt tired. I ballooned to ten stone seven pounds, gaining over a stone in the four months preceding August as I fought my hunger and confusion with more food. This was a shock to me. I had always had a very stable weight of around nine stone three, give or take a pound. I thought I was made that way.

I knew there was something wrong with me, but I didn’t know what it was. I researched hormones on the internet – according to alternative doctors my symptoms seemed to indicate a progesterone deficiency. But when I suggested this to my (female) doctor she promptly dismissed it with a laugh as impossible in a woman of childbearing age. She told me that the prescribed treatment for hormonal imbalances was to go on the pill – an option not available to me since my DVT, so the answer was to grin and bear it or go to the health shop and try some herbs. I don’t know – I had expected something more sympathetic or insightful from a female doctor, but it seemed her information on female hormones was about ten or fifteen years out of date.

Meanwhile, I was on a rollercoaster. I had started getting the sweats. My skin became spotty and I developed a patch of eczema near my mouth that left me feeling embarrassed. I had no creative energy at all, and the only thing I was capable of when I got home from work was sitting in front of Eastenders and various vapid house redecoration programs. The slightest thing made me furious. An innocent comment could spark a flash of anger so powerful in me that I found it hard to control the urge to strike out that came with it. J., my partner, was confused and unhappy. “You seem to have a lot of anger in you. Perhaps you should see a therapist?” Cue another flash of anger. Once when I was so tired and shaky after carrying heavy bags from the supermarket that an innocent comment made me spark with anger so uncontrollably that I actually slapped him in the face. I was a tyrant, and between anger, exhaustion and tears, my thoughts were: I need to escape, because I can’t live like this any more. In the dark moments of the secret tears, I even considered not living at all.

We thought a holiday would help, to get away from the stress at work. We went to Amsterdam. I spent the whole of that holiday stressed and angry; because I’d forgotten my sunglasses, I needed something to eat, I needed the toilet, I was wearing the wrong shoes, I was too hot, too cold, too tired, too bitter, and I hated the tourists. Every day I would look longingly at the coffee shops, wondering if smoking hash would be the answer, if I could find relief in drugs to quiet my mind. We took some photographs, and when I saw those photographs, I was disgusted – I was so fat and ugly, and I was surrounded by beautiful tall slender Dutch women. I really needed to lose some weight.

I’d tried dieting before. My history of dieting had been half-assed and pathetic. Not long after I had left university, I was unemployed, and I decided to teach myself to program computers. I had spent all day every day working in front of the computer and skipping meal after meal. Normally I’d just eat a bowl of Rice Krispies or Cornflakes, and that would be it until tea time. By the time tea time came around, I would be very irritable and impatient and have intense head, neck, shoulder and upper back pain. I never lost a pound. The next time I tried to diet I’d used Slimfast products. I found the shakes absolutely disgusting. The chocolate ones were foul, and the strawberry ones not much better. These Slimfast products just made me feel ill, no doubt because they were full of rubbish. Within about an hour of having a shake I’d be absolutely starving again – far hungrier than if I’d gone without. So often I would find myself snacking again to get rid of this awful hunger. Even despite restricting calories, I didn’t lose any weight. I couldn’t really understand it. I put it down to being programmed to be the weight I was and decided Slimfast was no good for me.

I’d also tried exercising before. That had actually worked. My partner and I had signed up for a gym. We went to exercise on the machines together or swim together two or three times a week. Every time I exercised I felt awful though – I’d be overcome by incredible shakes and hunger and feel as though I was going to faint, and that often meant that I wouldn’t be able to make it far from the gym before I had to go and eat something – usually at McDonalds! Despite this vicious cycle, I managed to lose three entire pounds in the space of about two months. What an achievement! Then we went on holiday to Ibiza for the week. I didn’t even eat that much. I don’t think I ate more than normal. I didn’t snack, and we spent most of our days there walking around. Yet I came back six pounds heavier than when we left. A net gain of three pounds. I wasn’t going to starve myself and endure the pain of going to the gym for months on end just to drop a few measly pounds then put them back on again at the drop of a hat. So I gave up.

I went to the Atkins website because I knew Atkins worked, I’d seen enough skinny celebrities to know that: Brad and Jen, Geri Halliwell, Renee Zellweger who put on weight for Bridget Jones eating doughnuts and lost it again with incredible speed by controlling carbs and calories. The media had told me that Atkins followers eat fried food, risk a heart attack and that eating “no carbohydrates” (sic) is dangerous. But there was a doubt in my mind – I know the media can be rabidly prejudiced, and where were all of these Atkins heart attack victims? The Hollywood starlets I’d seen as examples of Atkins were thin and obviously glowing with health. How could cutting out bread and potatoes, historical fallacies, actually be dangerous? I always try to give different ways of looking at things the benefit of the doubt because I know from experience (and a degree in social science), that much of what we take as fact in our society is often a distortion of the truth, if not downright wrong.

I wasn’t expecting to find The Answer, but I did when I answered the Atkins the blood sugar symptom questionnaire. The results were frightening.

Print out this page and enter your choices with a pen or pencil. Total each column, then multiply by the number at the top of that column. Add all together (remember, all in the 0 column = 0). If your score is more than 50, you test positive for blood-sugar stress.

Indicate each symptom according to the following:

0 = Never
1 = Mild and/or rare
2 = Moderate and/or up to twice a week
3 = Severe and/or more than twice a week

0 1 2 3
hungry between meals x
eat candy, cake, soda x
drink alcohol x
drink more than three cups coffee/cola x
cravings for sweets or coffee x
irritable before meals x
shakiness inside, especially if hungry x
faint if food is delayed x
tired all of the time x
depressed x
can’t fall asleep easily x
wake up during the night x
fearful x
difficulty making decisions x
difficulty with concentrating x
poor memory x
worried a lot x
feel insecure x
emotional x
moody x
feel like crying x
outbursts of anger x
make mountains out of molehills x
feelings of hopelessness x
bored x
bad dreams x
antisocial behavior x
phobias x
can’t work under pressure x
headaches x
sleepy during the day x
sleepy after food x
slow starting in the morning x
poor motivation x
eat when nervous x
fatigue relieved by food x
excessive thirst x
nervous stomach/cramps x
allergies or sinus problems x
can feel heart beat x
gastritis, gastroesophageal reflux x
disorder, ulcers x
abdominal bloating x
cold hands and feet x
shaking of the hands x
blurring vision x
lightheaded/dizzy x
lack of coordination x
excessive sweating x
frequent urination x
Subtotal: 0 6 12 102
Total: 120

I had reactive hypoglycaemia. It wasn’t for weight loss that I went on Atkins. If it had purely been about weight loss alone, I doubt I would have gone through with it. It was the revelation that I suddenly had a name for what was wrong with me, and that I wasn’t condemned to spend the rest of my life in emotional hell. Two days later I was on Induction and the shock to my body brought on my period a week early. Only two weeks later I had lost 12 pounds, my head was clearer, and the terrible anger which had before consumed my whole life had dissipated like smoke in the wind. At this time I was still half-vegetarian, eating only fish. After about a month of eating fish everyday the thought of eating more fish made me feel sick. I accepted defeat and went carnivorous.

I went to see my doctor to request a test for reactive hypoglycaemia. I showed her the results of this blood sugar questionnaire. She glanced at it without bothering to read it, and told me I should eat lots of “slow-release complex carbohydrates like pasta and wholemeal bread” – yet I already knew this advice was wrong. Pasta and even wholemeal bread are starch and they go into your blood stream almost as fast as table sugar. She told me that I’d “be a nightmare on something like Atkins”. I said nothing and went away with a slip of paper for a blood sugar test.

It was only when I got home that I realised she’d given me a request for an FBS (fasting blood sugar). A fasting blood sugar test only shows up diabetes, and it does that by indicating whether blood sugar is too high. To diagnose reactive hypoglycaemia, you need a 5 hour GTT (glucose tolerance test) with your insulin levels measured. This is when you fast overnight, have your blood sugar taken, drink a glucose drink like Lucozade and have your blood sugar measured every half hour for the next five hours. If you have reactive hypoglycaemia, what it will show is this: your blood glucose may or may not start out too low because you’ve been fasting, then it will shoot up too high when you drink the glucose drink, and you will produce too much insulin in response to the sugar in your blood, causing your blood glucose to crash after around two to three hours, leaving you hypoglycaemic, shaking and probably quite irritable and panicky due to the amount of glucagon and adrenaline that your body needs to output to combat the excess insulin.

A healthy person is able to stabilize their blood glucose by releasing the hormone glucagon into their blood supply when their blood glucose gets too low. A hypoglycemic, who has too much insulin in their blood, may not release enough glucagon either because their insulin levels are too high to trigger the release, or because the quantity needed to combat the excessive insulin is abnormally high, at which point the body resorts to adrenaline. The blood sugar response may even appear virtually normal, but what is abnormal in a hypoglycaemic is the insulin, glucagon and adrenaline response.

I already knew more than my doctor about my condition, and I knew complex carbohydrates weren’t the answer. Complex carbohydrates were what I’d previously been eating.

Atkins worked. It saved me from blood-sugar hell. I’m no longer scared of not eating meals on time in case I nearly faint when I’m away from the house. I’m no longer tired and lazy all the time. I no longer get flashes of anger for no reason at all. I can’t begin to tell you how different I feel. It’s like waking up after a long nightmare. I see things differently, I feel things differently, all the thoughts in my head are different, it’s as though I’m a completely different person in the same body and the only thing that makes me the same person is my memories and the fact that I’m looking out of the same two eyes. I’m calm almost all of the time, I’m like a Buddhist who’s found “inner peace.” I had no idea how drastic the change would be.

My creativity has returned, along with my energy. My allergies have virtually gone, and so have my asthma and eczema. My spots have gone, my hair doesn’t get so greasy, my skin doesn’t get so dry. I can run up stairs without wheezing afterwards. I feel stronger and have increased muscle mass in spite of not doing any extra exercise. Even the varicose veins in my legs are starting to retreat. It’s a miracle, and I never believed it would work in a million years.

That’s not to say things are perfect. I am very vulnerable to getting low blood sugar. If you so much as give me a few bites of something sugary or some bread it is enough to set me off again into a crash. Sometimes I wake up shaking for no apparent reason, but I know the problem is blood sugar now, and I know that the best thing I can do is eat a couple of eggs and pass on the toast. Sometimes I still get periods of brain fog and I feel a bit ADD in the afternoon. But when I start to feel this way I’ll eat a little low carb snack and the feeling will go away.

I’ve learned to be skeptical of theories that don’t have any proof: like the fat/heart-attack theory. Fifty years of nutritional studies have conclusively failed to show a statistically significant correlation between eating fat and cholesterol and heart disease. We’ve been eating meat and fish (and very little else except berries, roots, eggs and insects) for five million years, grains in significant quantities for only 10,000 years, sugar for less than five hundred years, and hydrogenated vegetable oils for less than a century. Archaeologists have confirmed that the agricultural revolution caused a deterioration of health. People became shorter and started to suffer from arthritis and nutritional deficiency diseases. We still aren’t as tall as our ancestors. Heart attacks, diabetes, cancer and autoimmune diseases are unknown in non-agricultural tribes. The Eskimos eat virtually nothing except seal meat and fish, and heart attacks simply don’t exist amongst the tribes continuing this diet. These diseases are the diseases of civilisation, and did not appear in significant numbers until the last century, and have increased to terrifying proportions in the last thirty years. What has changed about our diet in all of this time? We simply have not evolved to eat this way, and we’re paying for the consequences with miserable health.

As I’m writing this, I have a BMI of 20 and weigh 7 stone 12 pounds (110lbs) to a height of 5 feet 2 inches. It took me about six months to achieve that weight, and the same length of time to restore my glucose tolerance to something vaguely approaching normal. I had given up the idea of ever being able to feel “normal” again, but now on the rare occasions I lose my reason and eat bread or sweet things my body can now usually handle small amounts – though too much still tends to make me cross, I usually get hit the next day instead of in two hours time, and it doesn’t take a day to recover. I just eat some fat and protein, and my body sorts itself out. I’m far from normal – I guess I’m a latent hypoglycemic now, and I could never go back to a high carbohydrate diet in my current state. But I’ll be eating this way for life, and for my life.

Notes from October 2007

Something else that changed when I went on Atkins was that I lowered the amount of processed foods and additives in my diet to virtually zero. Before I went on Atkins, we had largely made the transition to a natural diet whilst I was on warfarin, but there were still one or two processed items hanging on. I cannot attribute my improvement on the Atkins diet solely to reducing food chemicals – I think I may have required more B12, but I believe that the changes in neurotransmitters induced by a ketogenic diet may have had a significant effect on my health.

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Written by alienrobotgirl

6 April, 2004 at 7:29 pm

Posted in My History

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