Real Talk 20th July 2018 by Helen O'Neill
‘Routine Tasks Became A Struggle’: An Irish Woman Shares Her Journey With An Invisible Illness
It took years for Kathy Carroll to be correctly diagnosed with Hashimoto's disease.
For a lot of people, Hashimoto’s disease may not be something they’ve heard of. But for those who suffer from it, it can consume their whole life.
Hashimoto’s disease is an autoimmune condition in which the immune system attacks the thyroid gland – this leads to hyperthyroidism, which causes weight gain, fatigue, pain and depression. Earlier this year, Gigi Hadid revealed she had been diagnosed with Hashimoto’s after getting flack for looking slimmer:
https://twitter.com/GiGiHadid/status/962814124479696897
https://twitter.com/GiGiHadid/status/962814160596881410
Irish woman Kathy Carroll was diagnosed with the disease in 2014 after years of problems and mistreatments. Since then she has set up her own Instagram page (@hashimotos_warrior) on which she tracks her journey.
Kathy led a pretty normal life in her 20s – socialising, going to college and building up her career. However, in 2009, she was diagnosed with Polycystic Ovarian Syndrome (PCOS) and put on the Dianette pill.
It was in 2011 that she felt there was something really wrong with her body. “I felt something was out of sync… I was chronically fatigued, suffered with joint pain and lack of concentration, and routine tasks became a struggle.”
She was told that she was fine apart from her iron and B12 levels being low, and was put on tablets and B12 injections. After feeling no better, and starting to feel fed up, she was told she should go on antidepressants, which she declined.
I knew I wasn’t depressed, just fed up that no one could figure out what was wrong. It made me feel a bit like a hypochondriac and made me question were my symptoms all in my head.
When her symptoms continued, she was referred to a neurologist who diagnosed her with chronic fatigue syndrome and pernicious anaemia. She was told to take time off work, rest up and get B12 injections every three months for the rest of her life, but nothing seemed to help. If anything, Kathy felt she was getting worse.
After some research, she started to think it was something to do with her thyroid, and in 2014 she was finally diagnosed with Hashimoto’s autoimmune disease and Vitamin D deficiency. “My first thought was I’m so relieved to finally have a diagnosis, I’m not going mad and my symptoms are very real,” she says. “My second thought was, trust me to get diagnosed with something that sounds like ‘sushi’.”
Kathy thought that once she got started on her medication she’d get back to normal, but that wasn’t the case.
Unfortunately if you’re diagnosed with one autoimmune disease it’s likely you’ll develop others, as they can come in clusters. It seems to be a common problem that ‘hashi’ patients find it difficult to find an endocrinologist that’s a good fit.
Kathy says that’s it’s very important for sufferers to get a doctor that really listens to your needs and treats your symptoms with the relevant medication. After seeing a dietician, Kathy decided to cut out gluten and go on a low GI diet which did help, but she didn’t feel her condition was improving.
As my iron and ferritin were still very low I was referred to a haematologist to receive iron infusions as I just wasn’t absorbing iron. The haematologist was fantastic and very open to combining western medicine with holistic treatment. He referred me for acupuncture and kinesiology within the hospital.
Kathy believes that this was the turning point for her. It helped her “emotionally with acceptance of having this disease, while focusing my mind on all the things I can do rather than the negative.” She is currently on a gluten, dairy and soya free diet which has helped her with bloating and gut health.
Kathy wishes she had been helped more before she got diagnosed. “Don’t doubt yourself. If something feels out of sync, don’t ignore it and don’t give up until you find out what it is. Do sensible research and be your own advocate, this can be really difficult when you’re feeling unwell so reach out to support groups so you don’t feel alone.”
For her, combining western and functional medicine is key. She says it’s important to to dig and try to find the root cause – while there is no known cure for autoimmune disease, Kathy has found treatments that ease it; diet, acupuncture, kinesiology, meditation, mindfulness and massage have all helped her.
As dramatic as it sounds you do have to grieve the person you once were and accept the new you. It’s OK not to be OK, I now live by the motto one day at a time.