Accutane almost destroyed my health. Here’s how I found my vitality again.
My acne was very mild; just a few spots around my nose, back, and chest. But as anyone who has suffered with acne knows, you see it far more than other people do.
At 18, I saw a doctor where I live on the island of Guernsey about this issue. He prescribed drugs like Oxytetracycline, Erythromycin, and Lymecycline, all of which were referred to as “mild antibiotics.” During this decade, I also had problems with recurring tonsillitis, chest infections, and a generally weak immune system; the antibiotics no doubt contributed to this. You will learn why later in the story.
The “Last Resort”
In January of 2009, at 29, I went back to see my doctor about the problem and he said, “Well, we’ve tried everything else, I think it’s time to try Accutane.” This was a drug I’d heard about from a friend, when he was at medical college, about seven years prior. My friend told me how strong the drug was, and how girls must take contraceptives while they use it, as any child they conceived while on Accutane, would be born with horrendous deformities.
This known side effect was one of many that appeared on a list given to me by my doctor, which had a space at the bottom for my signature, agreeing that I knew the risks involved. Unfortunately, my doctor adopted a very laid-back approach and told me he didn’t think I had any reason to be concerned. He also advised against me doing my own research on the drug before I took it. So I trusted his judgement and signed.
I took 80 mg a day, for four months, while I endured most of the side effects I was told about. Dry skin, peeling lips, fatigue, back pain, stiff joints, constipation, and a bit of depression. What I didn’t expect though, was for these symptoms to continue after I quit taking the drug, progressively worsening as time went by. My skin was clear for a couple of months, but all the side effects remained.
After the four month course, I felt like a weak old man, retiring to bed at 8 p.m. every night, dead on my feet. Eventually, I got more energy, only to have the symptoms worsen soon after, by which time I was certain the drug had left me permanently damaged. I was no longer able to exercise as my muscles were too weak and my energy levels were at an all-time low.
By this point, my acne had returned, so I went back to my doctor who put me on another course of Lymecycine, which I stayed on for a very long time. I believe the decision to put me back on this antibiotic long-term may have fanned the flames of damage already done by Accutane.
Long-Term Side Effects My Doctor Denied
In January 2010, for around six months, I battled fatigue and a newly developed anxiety problem. I returned to the doctor, told him I wasn’t feeling well at all, and that I thought the Accutane had permanently damaged me.
“There’s no chance you could still have side effects; you’re not on the drug anymore,” was his response — a sentiment that was contrary to what he’d told me prior.
Before I agreed to take the medicine, he told me, ‘This drug works by poisoning the body, so that your skin produces less oil.” That seems like a fairly long-term side effect to me.
And then my doctor tried to turn the tables on me, “Have you considered that it might just be life making you tired?” One of many patronizing comments I still remember. He then conceded to a blood test although stating he didn’t think he’d find anything.
Two weeks later I received a call from my doctor’s office. “Tom, can you come in to see the doctor, something wasn’t right with your blood test.”
I walked into his office, sat down, and was told that my vitamin D levels were “dangerously low”. I supposedly had not been getting enough sunlight so he prescribed some vitamin D supplements.
This didn’t add up for me. As a fire and security systems engineer, I was spending a lot of my working hours outdoors, and I certainly didn’t shy away from the sun. Still, I took the vitamin D supplements and hoped for a cure. Any positive effects I felt were pure placebo, and didn’t take long to wear off.
About a month later, I traveled to Fuerteventura in the Canary Islands, for a week. This was when I began noticing real problems. It’s strange how you only seem to notice bowel habit changes when you’re away somewhere. While on this holiday I had no bowel movements at all. I was totally constipated and nothing I did seemed to help. I was eating a ton of dried fruit and cereal at hotel breakfast times, but nothing was shifting. I also noticed a huge decline in my sex drive around this time. It’s hard to map things out on a timeline; I wish I had kept a diary, but this was about the time I changed from a “glass half full” to a “glass half empty”, kind of guy.
My personality gradually began to change too. I left a job as an aircraft technician, and was dealing with anxiety on a daily basis. At first, I chalked it up to being nervous about learning new skills, but it never went away. Anxiety is a difficult thing to understand if you’ve never experienced it. The best way to describe it would be to picture feeling like you’re going to fall from a high place — that feeling you get for a split second, before you grab onto something. It’s like that, only it goes on with no end in sight.
I was finding life very difficult, dealing with a long list of symptoms: anxiety, depression, insomnia, fatigue, joint pain, mood swings, constipation, bloating, abdominal cramps, intense lower back pain, a tingling sensation in my head, eye twitches, brain fog, and a general overall feeling like I was falling apart.
I don’t know how many times I visited my doctor’s office, yet none of my visits left me with any answers. Conventional medical professionals seem to be devoid of any kind of basic intuition when it comes to health; every doctor I saw refused to acknowledge the fact that all of my problems started after taking Accutane. I’m not sure if they were aware of the drug’s history and that it’s actually a chemotherapy drug, also formulated for the treatment of brain cancer.
From Severe Acne To Cancer
Accutane is the trade name for Isotretinoin, a vitamin A derivative. It was first marketed as Accutane by Hoffmann-La Roche. It sold well for many years, but in 2009, Roche decided to remove Accutane from the U.S. market after juries had awarded millions of dollars in damages to former Accutane users over inflammatory bowel disease side-effect claims. It then became generic, and is now marketed under many brand names worldwide. Its strength warrants a place on the Chemocare website.
Around 18 months after taking Accutane, one morning I was taking a shower, and felt a lump. This “lump” was in a fairly awkward spot, and appeared on a day when I was already due to see my doctor about my anxiety, fatigue, and insomnia. So, I walked into his office, told him about my four problems, and was told something I’ll never forget; “Tom, you’re not supposed to save things up. You should have booked a double appointment.” He then proceeded to patronize me by asking the usual mental health health questions and told me he thought I was suffering with depression, which was no surprise.
He wasn’t going to look at my fourth issue, but then he changed his mind at the last minute. I jumped up onto the examination table whereupon he concluded that I had developed an abscess. He then proceeded to prescribe some strong antibiotics. If that didn’t do the trick, I’d have to have it cut out. This “abscess” was, let’s just say, at the end of my digestive system.
My first and only thought was, “How the f*ck did that happen?”
At this point, I was tearing my hair out trying to find answers. Why was my body falling apart and why did no one have any answers for me? My relationships with friends and family were starting to be effected. The romantic relationship I was in at this time ended as a result of all my health symptoms and stress, which only made me feel worse. It’s hard to convince people you’re unwell when doctors can’t give you a diagnosis and constantly dance around the facts staring them in the face. When I looked in the mirror I didn’t recognize the person looking back at me. Why couldn’t they see what was happening?
At My Worst
In December of 2012, my health took yet another serious nose dive. One morning I woke up feeling groggy, my head was spinning, and I was dealing with symptoms that are very hard to describe. Simply put, I didn’t feel good at all. This continued for days so I went to see a doctor again. This time I chose to see a different doctor who sent me for another blood test.
Turned out my Thyroid Stimulating Hormone (TSH) was sky high and out of balance. Upon hearing this, I actually felt good. Finally, I had a reason for why I’d been feeling so terrible. The doctor sent me away for a month, told me they’d test me again in four weeks time, and if the result was the same I would have to go on thyroid medication for the rest of my life.
Now, let’s think about that for a second, take a look at the photo of my body in 2008 I was fit, and strong. I ate what I thought was a healthy diet and I was pretty happy with my life. How could I have deteriorated so much in three years time to the point where I was dealing with health problems that are normally faced by people much later in life or not at all?
I returned for the follow-up blood test, which came back normal! The doctor was unable to give me a reason for this which was incredibly frustrating, because by this point, I needed answers. This was my defining moment when I realized that I had been going wrong my whole life. I had handed ownership of my health over to a third party. My health was my responsibility! So I did the unthinkable. I turned to “Dr Google.”
My Quest For Knowledge
The first search I tried was, “foods that attack the thyroid“, and the resounding answer was gluten. I removed it from my diet and within three days it was like someone had turned the lights back on. This was only the start.
I demanded to be referred to a gastroenterologist, who completely disregarded my claims about Accutane, carried out a colonoscopy and endoscopy, took a biopsy, and found nothing. He offered me no follow ups, and diagnosed me with Chronic Fatigue Syndrome (CFS) and Irritable Bowel Syndrome (IBS), leaving me to find my own way in the dark again, as both of these conditions are extremely vague.
I booked an appointment with a nutritionist who arranged for a stool test to see what condition my gut flora was in. This was the turning point. The nutritionist’s test showed that my levels of beneficial bacteria were good, but I wasn’t digesting fats well and I was carrying two parasites. I did some research on the parasites, and opted to treat them conventionally.
Doctors where I live were reluctant to take these parasites seriously, so I sought the help of a UK doctor, who prescribed a powerful cocktail of three antibiotics. I was so blinkered at this point, still thinking that conventional medicines were the answer. So, I took the drugs for two weeks and the results were disastrous; I was passing blood and my fatigue was off the scale.
Microbiome is the collective term given to the dense population of microbes that live in the gut. This microbial colony is essential to our existence. When they are harmed, every aspect of our health is harmed. Every time you take an antibiotic, a number of these microbes will die and some strains will never return. The general rule appears to be that the more diverse your gut flora is, the healthier you will be.
So, there I was, completely screwed. The third girlfriend I’d had during my illness told me that living with me was like, “living with a sick old uncle.” Then she left me to fight my battle alone, which was probably best for both of us.
At this point, I vowed to face my problem head on and study everything. I began my working life as an aircraft technician, then moved on to working with security systems. I knew a lot about fixing things but I’d never had to fix my body before. I began learning all about Accutane, gut health, nutrition, and listening to other people’s experiences of healing from long-term illness. My progress was slow and emotionally challenging.
My doctor’s advice was, “When you’re not at work, do as little as possible.” This was very hard for me, but I tried to use that time wisely to figure everything out. The more I studied, the more I realized how many lies have been propagated by mainstream entities. I became aware of just how powerful dietary tweaks could be when treating chronic illness.
Although I was becoming more and more enlightened, I was still sick, and very isolated. Socially, I’d become that guy everyone avoids. When people’s standard, “How are you?,” is consistently answered with, “Not well actually,” they start to shun that person. It’s just human nature; we are programmed to avoid sickness and prevent the spread of disease.
The Road To Recovery
I discovered fairly early on that the diet I did best on was the paleo diet; a way of eating that excludes all foods that entered the human diet during the agricultural revolution.
After around six months, I decided to head to a clinic in the UK that offered Fecal Microbiota Transplants, which is exactly what it sounds like. They specialized in taking bacteria from a healthy donor’s digestive system, and implanting it into the gut of a person with a digestive disorder, where an imbalanced gut flora plays a key role. I would end up returning twice, eventually doing 30 transplants! Unfortunately, they weren’t the “magic bullet” I expected them to be. My fatigue saw noticeable improvements, and my IBS did improve, for a while, then became worse again.
I realized fairly recently that the root cause of my problems was impaired liver function, due to damage caused by the Accutane. That got the ball rolling and everything else followed as a result. It left me with very low bile production, resulting in chronic constipation and toxicity. The lack of bile also meant I wasn’t able to digest fats properly, hence the vitamin D deficiency, as it is a fat soluble vitamin. How my doctor missed this I will never know; maybe he knew what had happened but decided not to acknowledge it, which is a real shame. If he had only grown a spine and taken it on the chin that Accutane was the cause of my problems, maybe all the years of pain could have been avoided. I am now working on improving the health of both my liver and gut.
My gut is most certainly “leaky” as a result of the torture it has endured. I am sensitive to so many foods these days, it makes eating a real challenge. I have to follow the autoimmune paleo protocol, avoiding all cereal grains, nuts, seeds, sugars, nightshades, etc. I have to follow low FODMAP due to my imbalanced gut flora, and I also have trouble digesting some fats too,mostly due to the continued lack of bile. When I eat grains or nightshades I experience skin flare ups, bloating, constipation, fatigue, joint pain, dizziness, depression, anxiety, and irritability. Along with my strict diet, I also take a large amount of supplements, most important being probiotics, digestive enzymes, collagen, and omega 3.
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Ditching Accutane And Embracing Natural Medicine
After eight years of ill health, I can now say that I am enjoying my life again — certainly not as fully as I was prior to taking Accutane, but as long as I stay on course with my strict diet, I generally feel happy and balanced.
Thousands of people are finding themselves in a similar position to me after taking Accutane, but doctors still refuse to acknowledge that these issues are caused by the drug. Despite the numbers of suicides tied to it and successful court cases where its use has been found to have caused ulcerative colitis or Crohn’s disease. Doctors and dermatologists are continually pushing the totally incorrect mindset that diet plays no role in skin health, something that I found to be completely false. My diet changes were the only thing that actually cleared my skin. I am now spot free and it’s certainly NOT thanks to Accutane.
Most people who take it think that they have exhausted every natural treatment option for acne, when in reality, most have barely even scratched the surface. The causes of acne are bacterial and hormonal, and Accutane does not address the root causes; it merely aims to prevent your body from doing something it was designed to do.
Although my experience has been profoundly negative and extremely difficult to endure, I am grateful for some of it because I have absorbed so much information. Information that I now hope to use to help other people recover after suffering the long term consequences of this drug or any other chronic health problem; so many of which are caused by poor diet and gut health. I have now spent approximately three and a half years studying and have just qualified as a Primal Blueprint Certified Health Coach. I am excited to use this knowledge to empower others to make positive health changes in their life.
Tom Shearer is a graduate of the Primal Blueprint Health Coach Academy and an Accutane Victim.
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