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Shared experience

Living with type 1 diabetes, hypothyroidism and vitiligo

Rebekah’s story: “I had no idea that having one autoimmune condition makes you more at risk of getting others”
Content last reviewed and updated: 29.11.2023

A photo of a woman posing with her hand on her hip in front of a gassy lawn.

Rebekah Matthews is a District Nurse from Sheffield who has type 1 diabetes, an underactive thyroid and vitiligo. These are all autoimmune conditions, which is where the body’s immune system mistakenly attacks its own cells. Rebekah shares her story to raise awareness that it’s common to have more than one autoimmune condition.

Type 1 diabetes

I went on a school trip to Italy when I was 14. During the trip I felt so unwell; I had an awful headache and was really thirsty and constantly needing the toilet. I had also lost my appetite, despite feeling hungry I just didn’t want to eat. When I returned after my week away I weighed only six stone and my teachers were concerned I was struggling with anorexia. I am sure my mum knew it wasn’t anorexia, so she took me to the GP.

Managing type 1 in the 1980s

The family GP tested the sugar in my urine and told me I had diabetes. I remember him saying: ‘It could be the type where you have to inject insulin for the rest of your life, or it could be the type you can manage with medication.’ I spent a week in the children’s hospital being taught how to inject insulin. At that time I used disposable syringes and needles to inject myself once a day with a mix of fast-acting and long-lasting insulin.

I had a wooden stand filled with test tubes like you’d find in a chemistry lab to check the glucose levels in urine. I had blood glucose test strips that produced a colour that I had to compare against the test strip bottle. It wasn’t precise and was very time consuming, so I never bothered checking my blood sugar levels. It’s hard to imagine now that I could go a whole week without checking my levels. It was probably only during my first pregnancy that I started paying more attention to my type 1 diabetes, with support from the specialist diabetes centre in the prenatal department.

Vitiligo

When I was about 30 years old, I noticed patches of paler skin on one of my thumbs. This turned out to be the autoimmune condition vitiligo , which is a lack of the pigment melanin. It gradually spread from my thumb up my hands and appeared on my feet and under my eyes. I’m now 53 and my natural skin colour is now returning to some of these paler patches. My consultant said this is because autoimmune responses weaken with age, so my melanin is coming back. I used to be self-conscious about my skin but now I don’t care if people stare!

A third autoimmune condition

In my mid-40s I started feeling tired, cold, low in mood and putting on weight. I saw a photo of myself and noticed my neck looked lumpy. I googled my symptoms and arrived on the British Thyroid Foundation website, where they have a list of symptoms for hypothyroidism. I found I had many of these symptoms, so I made an appointment with my GP.

Underactive thyroid (hypothyroidism)

A quick blood test revealed I have high levels of thyroid stimulating hormone, which is a sign of an underactive thyroid. I now take a drug called thyroxine and have regular blood check-ups. Like the onset of hypothyroidism, the recovery is gradual, so it took a little while for me to feel better.

Menopause

It’s difficult to know whether my autoimmune conditions affect each other. My vitiligo just affects how my skin looks and requires extra protection from the sun. My underactive thyroid probably does affect my type 1, but the symptoms of thyroid disorders can overlap with menopause and menopause also affects type 1. So, I’m not sure which is behind things like my changing insulin sensitivity. I’m now receiving support from my local diabetes and endocrinology centre, where my consultant helps me manage both my type 1 and underactive thyroid.

Arm yourself with knowledge

People with type 1 should receive an annual thyroid test, but this doesn’t always happen. You’ll already be having a blood test to find your HbA1c, so make sure your healthcare professional is also checking your thyroid stimulating hormone levels. This is important because having one autoimmune condition increases your risk of developing other autoimmune conditions. I recommend doing your own research and being aware of your own health. If something in your body doesn’t feel right, ask your primary and specialist healthcare professionals. If you don’t ask, you don’t get answers.

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