If you’re like a lot of people who receive a Hashimoto’s Thyroiditis diagnosis, the recommended course of treatment that was outlined to you after that diagnosis was basically ‘Take this medication to normalize your thyroid levels.’ And that’s because even though Hashimoto’s is an autoimmune condition – the first organ specific one ever identified – it’s still treated like a thyroid condition.
Part of the problem is that autoimmunity is misunderstood by so many people, including lots of folks in the medical field. For one thing, it’s tough to diagnose because the symptoms can mirror those of so many other conditions. Hashimoto’s, for instance, presents as hypothyroidism, and while it’s estimated that 90% of hypothyroid cases are actually caused by Hashimoto’s, most conventional medicine practitioners will look for other explanations before testing for thyroid antibodies and other markers of the disease.
Then there is the fact that doctors will routinely treat the symptom (hypothyroidism, etc.) instead of attempting to identify what is triggering an autoimmune response in Hashimoto’s patients. The end result is that the thyroid continues to be assaulted by the immune system even while symptoms are being managed.
Outside of the medical community, autoimmune patients face the same issues as those faced by others with chronic illness. People say we don’t look sick. We wouldn’t be so tired if we’d just get up and exercise more. We wouldn’t gain weight if we put down the fork. And so on and so forth. Autoimmunity is one of those pesky invisible conditions that can make life a living hell for sufferers without any visible symptoms, and on top of that, many people have never even heard of autoimmune disease. Is it any wonder that friends and family might find it difficult to be supportive?
The best thing we can do as patients in both cases is educate ourselves! Here are some facts about what autoimmunity is and isn’t that you can arm yourself with when you know you’ll be talking to someone who just doesn’t get the challenges of living with Hashimoto’s.
1. Autoimmunity can be described as the system of immune responses of an organism against its own healthy tissues. In the case of Hashimoto’s, the immune system is attacking the thyroid.
2. This autoimmune response is actually a natural and beneficial part of the human immune system when it operates at a low level. In the case of autoimmune disease, the immune system is mounting a full response directed at the body’s own tissues.
3. Environmental, emotional, and other factors can trigger autoimmunity. The potential for autoimmunity was likely always there in your genes but the group of genes wasn’t turned on until you encountered your trigger. Interestingly, the same genetic vulnerability might manifest as different autoimmune conditions.
4. Autoimmunity is a real condition, but underdiagnosis and misdiagnosis is common. Part of the problem is that there aren’t autoimmunity specialists – yet. Instead, various specialists who deal with an organ or one system of the body affected are consulted.
5. Way more women than men – about 75% – have autoimmune diseases like Hashimoto’s but the reason for this isn’t known. Unfortunately, even outside of the autoimmunity world many women have issues being taken seriously by doctors and the confusing nature of autoimmune symptoms doesn’t help in that regard.
6. The number of people with autoimmune disease is increasing, decade by decade, and Hashimoto’s is one of the specific conditions we’re seeing more frequently. That said, the scientific community still has no idea why that is.
7. One survey found it took autoimmune patients up to 4.6 years and 5 doctors to get a diagnosis! That’s a lot of time and money invested just to finally get answers.
8. Autoimmunity is real, Hashimoto’s has been a known disease since 1957, and Hashi is not your fault. Because we’re only now starting to understand some of the triggers of autoimmune disease (and then only in some people) there’s nothing you could have done to prevent it.
9. Medication works for plenty of autoimmune disorder patients but taking a pill for symptoms only addresses the symptoms, not the underlying root cause. It is possible, with trial and error, to go into full remission – which for Hashimoto’s sufferers means no thyroid antibodies present.
Frankly, it’s pretty shocking that so few people – and medical providers – are familiar with autoimmunity when it’s so common now. What that means is that those of us in the Hashimoto’s community and the larger autoimmune community have to educated ourselves and then become educators. Do we need to “prove” we’re sick to anyone? Absolutely not! But being open about this condition we share can do so much good for those who are diagnosed after us and that is HUGE. Never forget that we’re all in this together.