Patient voice: hypothyroidism

Hypothyroidism, also known as underactive thyroid gland, is when your thyroid gland does not produce enough hormones for the body’s needs. It is the most prevalent endocrine disorder worldwide with a prevalence of 2% in the UK.¹

Clinical manifestations of hypothyroidism range from life threatening to no signs or symptoms. The most common symptoms in adults are fatigue, lethargy, cold intolerance, weight gain, constipation, change in voice, and dry skin, but clinical presentation can differ with age and sex, among other factors.²

A patient’s story

John had symptoms for over two years before he received a diagnosis at the age of 38. He initially attributed his increasing fatigue to raising a young family and having a demanding job teaching secondary school students. In fact, when he googled his symptoms they all mimicked the physical manifestations of stress so he stepped down from his management position, joined a gym and tried to balance work and leisure more effectively.

Yet he kept feeling worse. He was constantly exhausted but couldn’t sleep and usually quite cheerful his mood was often low. It was when he realised the only time he felt warm was standing in a hot shower that he visited the GP.

The doctor unfortunately didn’t recognise the red flags for thyroid disease and instead quizzed him about his diet, ending the appointment with instructions to eat ‘five a day.’

Over the next six months, his symptoms got worse. He had mouth ulcers and skin problems. He began to worry that it was something more serious so returned to the GP practice and saw a different doctor. This time the GP immediately ordered a blood test.

“I left that first GP appointment feeling dismissed, discouraged and embarrassed.”

The test, called a thyroid function test, looks at levels of thyroid-stimulating hormone (TSH) and thyroxine (T4) in the blood. A high level of TSH and a low level of T4 in the blood could mean you have an underactive thyroid. John’s levels of TSH were so high that when the results came back, the GP asked how he was still standing.

He was placed on replacement thyroxine and after a couple of months of dose adjustments he stabilised on 125mg levothyroxine daily. Within a few months he felt normal again.

John said: “After getting the diagnosis I was just relieved that it was something that could be managed with medication. The key now is remembering to take my tablet each day. Having a set time helps. When I am ill then some old symptoms reappear, but I know I am lucky that it can be controlled so easily.”

When he was first diagnosed he read around the condition but currently doesn’t access patient groups as he feels like his condition is stable, but he can see the worth of them and said if things changed or he got a new symptom he would seek out other people in the same situation.

He now has a blood test once a year to check his thyroid hormone levels.

He added: “The biggest message I could give healthcare professionals about hypothyroidism is don’t make assumptions on how the patient presents. When things got worse I left it for a long time before I went back to the GP again. I left that first appointment feeling dismissed, discouraged and embarrassed.

“It turned out to be something more serious than digestive problems or poor diet. It could have been treated so much sooner and my cholesterol was rising as a result which could have had dangerous consequences in the future. You shouldn’t be made to feel silly for going to see to a GP.”

1. https://www.btf-thyroid.org/hypothyroidism-leaflet
2. Chaker L, et al. Hypothyroidism. Lancet. 2017 Sep 23; 390(10101): 1550€“1562

If you would like to share your story about a condition or chronic disease please email the editor at [email protected]

Symptoms of hypothyroidism

• Fatigue
• Weakness
• Weight gain or increased difficulty losing weight
• Coarse, dry hair
• Dry, rough pale skin
• Hair loss
• Cold intolerance (you can’t tolerate cold temperatures like those around you)
• Muscle cramps and frequent muscle aches
• Constipation
• Depression
• Irritability
• Memory loss
• Abnormal menstrual cycles
• Decreased libido

Source: https://www.endocrineweb.com/