Living with Hashimoto’s thyroiditis – the gift that keeps giving

Written by David Christopher,

​I was diagnosed hypothyroid about 20 years ago, by chance, via a ‘well man’ test. It was a real shock. Not to worry, I was told, you just need to take a tablet every day and it will be fine. And so, it began.

I wasn’t fine, my thyroid hormone levels didn’t stabilise, my dose of levothyroxine kept on going up and my GP couldn’t work out what was wrong. I saw an endocrinologist who said I was hashitoxic, i.e., my thyroid problem was an auto immune condition. Originally, I had been hyperthyroid, had Graves disease and thyroid eye disease, which weren’t diagnosed and treated, but went away when I became underactive. This left me with some double vision on my left-hand side.

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My levothyroxine was set at 275 mcg and settled down. I was told, almost in passing, that once you have one autoimmune condition, you can develop others, but didn’t really think about it. For about 15 years all was relatively ok. I never felt quite the same, had energy than previously and become more moody. I also had about 4 years of allergic reaction to the sun, which was a pain, but settled down.
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About four years ago I developed sore feet follow a walking holiday. It was very painful and didn’t go away, so I saw a doctor and was told I had plantar fasciitis. I had to wear insert in shoes, and it lasted about 6 months. It recurred a few times, but has settled down. Three years ago, I had pain in my left arm, and it was kind of numb. Ever melodramatic, I thought it was a heart-attack, so saw a doctor, and was told I had carpal tunnel syndrome – which is linked to hypothyroidism. I had to wear a wrist splint, this still comes and goes.

All the time, my levothyroxine kept on going up, I think it got to a maximum of 300mcg a day. About a year ago, I noticed in cold weather that my fingers stinging, going white and numb. I assumed it was due to the cold. One morning, I woke up with numb hands and feet, which was very disconcerting. I went to hospital, and they were flummoxed, did blood tests, and pumped me with B12. It turned out I was coeliac, confirmed after gastroscopy, which is an autoimmune condition. So, I had to go gluten free, a disaster for someone who likes bread and pastries!

I assumed undiagnosed coeliac disease had affected my hands and feet and would calm down, but it didn’t. I’ve had brain scans, and nerve conductivity tests to try and find the underlying cause. It turns out my white fingers were due to Raynaud’s disease, another autoimmune condition, I may also have rheumatoid arthritis, again autoimmune related. To date, the best thing that has happened is that I’ve had physio, which really helped my hands and feet. The numbness has lessened, but a certain stiffness and low-level pain remain. My dose of levothyroxine has come down, undiagnosed coeliac disease may cause malabsorption of levothyroxine.

When first diagnosed, I was rather blasé, not realising how my illness would affect me or my family. I also discounted the autoimmune element, thinking it wouldn’t happen to me. My journey continues, things are better and hopefully I’ll get resolution re the arthritis and be able to move forward. However, at the back of my mind I always wonder what next?

My advice for anyone with similar conditions is, listen to your body, you know best how you feel. Don’t letter doctors fob you off, and remember that lots of apparently random and unconnected issues, could all be down to your immune system and linked. So, don’t discount things, seek answers, and never give up, oh, and good luck!

"David was diagnosed as hypothyroid (Hashimoto's) in 2003 and developed coeliac disease and Raynaud's syndrome in 2023.  He has been a regulator, mainly education and healthcare, most of his professional life, and lives in west London, with his wife, two kids and cat."