Update: a diagnosis

Yesterday, my blood results confirmed a diagnosis of Hashimoto’s Disease. In a nutshell, my immune system has mistaken my thyroid for something nasty and produced antibodies to kill it. I will need to take medication for the rest of my life – a synthetic substitute for the thyroid hormone that I’m not able to make.

In theory, once I am taking enough medication, I should be fine. However, I haven’t yet spoken to anyone with this condition who has had such a simple ride. Too much thyroxine is dangerous, and medication has to be increased carefully. I was started on the lowest possible dose by my GP. My endocrinologist thought this was too conservative for the severity of my condition, and the dosage was doubled as of today.

Once stable, everyone I’ve spoken to has had to battle to get repeat tests when they have suspected that their dose needs adjusting. In these cases, the patient has always been correct in recognising the symptoms of low thyroxine levels.

The dose I’m now on is still fairly low. It takes 4-6 weeks for thyroxine levels to build up, so I have to bear in mind that I won’t feel better immediately. It means waiting 4-6 weeks before my next blood test if I want an accurate assessment of whether the medication needs increasing further (it will probably need several increases).

Added to all this, I have a mysteriously low calcium level. I already have osteopenia and take calcium and vitamin D supplements and eat enough dairy to keep UK farmers in business. In the last 18 months, I have gained weight and increased my calcium intake to try and reduce the likelihood of osteopenia becoming osteoporosis. My calcium levels briefly returned to normal and have fallen again, suggesting I’m not absorbing the calcium I’m taking in.

I have now been prescribed a much stronger supplement, but I’m baffled as to why this is necessary. The endocrinologist has advised my GP to test me for Coeliac’s Disease in case something is preventing me from absorbing the nutrients I’m eating. I’m also craving salt in a way that should be extremely unhealthy. This can be a symptom of Addison’s Disease, but my blood pressure is normal, which doesn’t fit with that diagnosis.

Both Coeliac’s and Addison’s are autoimmune conditions. Having Hashimoto’s roughly triples my likelihood of developing either of them. I’m not sure I fit with either diagnosis, so I’m hopeful that these symptoms are somehow related to my thyroid. Either way, I can’t afford to have low calcium, and untreated Addison’s can be life-threatening, so both conditions need ruling out. This should be done alongside my next thyroid function test.

In all likelihood, Hashimoto’s is the explanation for everything. I seem to be getting more rather than less tired, but I’m hopeful the increased dose of levothyroxine will help. I’m less bothered by the other symptoms now I understand them, but the fatigue is all-consuming. It’s hard to balance doing enough to prevent me from becoming a recluse without doing so much that I can’t function. I apologise to everyone suffering with an underactive thyroid – I didn’t appreciate how debilitating it can be until now.

I’ve been extremely touched by the responses to my previous blog on social media. The writing of it was cathartic, but I hesitated before sharing it as I wasn’t sure how interesting it would be to anyone not suffering from this condition. I know that not running big miles doesn’t change who I am, but I feel quite lost without it and appreciate the support of the running community.

I’m extremely grateful for the last 1300 days of runstreaking. They have given me the level of fitness to be able to keep running a little bit, even when I’m not at my best. I didn’t celebrate Day 1300 by running 13 miles or even 13 kilometres. Whilst it’s fun to play with the numbers when I can, the streak isn’t about forcing myself to run. It’s about getting out every day and enjoying it. I ran fewer miles at a slow pace with my boy, and I’m happy I can do that.

I will keep plodding on. I hope to get back to the long stuff sooner, but later will do. I am extremely grateful to be able to run at all. I know many people are not as fortunate. That doesn’t stop me from being frustrated, but perspective is important. Writing helps me retain a little of that. Thank you for reading.

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