“I am sharing my story today because I want to give hope, validation, and courage to other women and mothers who might currently be suffering in silence and feeling dismissed by their doctors.’”

When Jannette started experiencing physical symptoms after the birth of her child, these were dismissed. When she was finally diagnosed with Hashimoto’s thyroiditis (autoimmune hypothyroidism), she was profoundly hypothyroid and experiencing severe physical and psychological symptoms.

Jannette is sharing her story to encourage others to see their doctor if they have symptoms and ask for further investigations, including a thyroid function test where appropriate.

My journey through extreme thyroid failure

If you are sitting in a doctor's surgery right now, feeling deathly ill but being told "It is all in your head" please listen to my story. I am writing this because I never want anyone else to feel as terrified, isolated, and physically broken as I was.

I gave birth to my daughter in autumn 2002, shortly after having lost my mum. With my body completely depleted by pregnancy and my heart broken by grief, the creeping fatigue I had been experiencing for months became a living nightmare.  

I had experienced a miscarriage the previous year. Shortly before this my thyroid function had been tested and the results were reported as normal. Because of this, when I later became very unwell, one doctor told me, “It can’t be your thyroid—we checked that before.” This didn’t take into account the fact that thyroid function can change significantly over time and may deteriorate during or after pregnancy.

Instead of running a simple blood test to check my thyroid health after my daughter’s birth, my doctors told me my symptoms were a figment of my imagination. They sent me for brain MRIs and neurological scans, and when those came back structurally normal, they diagnosed me with Generalized Anxiety Disorder and told me I needed antidepressants or Cognitive Behavioural Therapy (CBT) to support my mental health. After many visits, my GP looked me in the eye and said, "It's all in your head; there is nothing wrong."

I walked out and cried in despair. But my sister looked at me and said, "I know you're telling the truth." She thought my organs were failing. She was right, at least as far as my thyroid was concerned.

What my extreme hypothyroidism looked like

Medical leaflets talk about vague words like ‘fatigue’ and ‘weight gain’. These didn’t capture my terrifying, disfiguring reality. When my thyroxine levels (Free T4) hit absolute zero, these were my physical and mental symptoms:

• The face and weight: I didn't just gain weight; my face swelled up until it looked like a balloon, completely changing my appearance.
• The hair loss: It wasn't just a thinning head of hair; my hairline was destroyed, looking as if someone had physically chipped away at my fringe.
• The exhaustion: This was not like having a bad night's sleep. This was a profound, heavy inability to move my body or even keep my eyes open, even first thing in the morning.
• The leg pain: My calves felt constantly locked, cramped, and trapped in a tense, agonising, squeezing pain that made walking a physical battle.
• The swollen tongue: My tongue grew so large that it caused a terrifying choking sensation, making me too afraid to fall asleep.
• The moving vision and vertigo: The dizziness was so severe that the ground felt like it was physically moving under my feet as I walked, forcing me to cling to walls.
• The blurred vision and floaters: My eyesight degraded to the point where road signs were a complete blur, and my vision was permanently filled with dark, black floaters.
• The voice loss: My voice vanished and turned into a deep, raspy sound like an 80-year-old, making it completely impossible to sing or hold a note.
• The heavy bleeding: I suffered from incredibly heavy periods with massive blood clotting, which further drained my body of iron and strength.
• The weakness: My upper body was so weak that a simple everyday movement like using a hand whisk caused severe pain in my arms.
• The mind misfiring: I experienced terrifying visual or auditory hallucinations and a detached, out-of-body feeling that made me believe I was going mad. This is a real clinical state called myxoedema* psychosis,** caused when the brain is entirely starved of thyroid hormone.

My journey to healing

If there is one thing I need you to take away from my story, it is this: You have to fight if no one is listening.

When you are that ill, the exhaustion is so heavy that you cannot think straight. Please, ask for help from your family. Ask them to be your voice when you have lost yours. My sister was my lifeline because she believed me when the doctors didn't.

If your GP is dismissing you, change your GP immediately. I felt as though I was fighting for my life. I just knew that I wasn't being listened to. I had a five-year-old son and a newborn baby girl to look after, and I was struggling just to survive each day. I knew I couldn't give up.

I walked into a new GP surgery, looked at the doctor, and cried. I told him, "This is not me. I am sick."

Instead of writing me off, he actually looked at me. He said, "Right, let's do a full MOT."

The very next day, the phone rang. It was the new GP. He told me, "It's your thyroid." The day after that, he called back to say my liver results were also abnormal because my metabolism had slowed to a near-halt.

When I finally saw my exact numbers, the truth was terrifying. My TSH was 100 (the hospital's lab equipment couldn't even measure higher than that) and my Free T4 was absolute zero. My thyroid gland had been so aggressively attacked by my own immune system that it had shrunk to the size of a pea. I effectively had no functioning thyroid left.

My recovery was not immediate. My GP put me on levothyroxine , but even as the dose went up, I still felt deeply ill, possibly because my body lacked the metabolic energy to convert it. I had to advocate for myself yet again to see an endocrinologist. That specialist immediately recognised I was still undertreated, and he added T3 medication to my levothyroxine. After starting this treatment, I experienced a significant improvement and felt much closer to my former self.

Today, twenty-three years later, I am well. I still get mild, odd symptoms from time to time that try to trigger that old fear, but I stop, take a breath, and remind myself: "I have medication in me. I am safe."

I survived a personally devastating metabolic collapse, the sudden loss of my mother, and a medical system that failed me, all while raising my babies. My daughter is now grown up I am here, I am healthy, and I am proof that your instincts are right. Trust your body, find people who love you to back you up, and never stop fighting until someone listens.

*Myxoedema is a term for severe hypothyroidism. Symptoms associated with this condition include facial swelling, skin thickening and extreme fatigue. If left untreated, it can escalate into a life-threatening condition called myxoedema coma. This very rare condition requires immediate medical treatment.

** Myxoedema psychosis is a rare neuropsychiatric complication of severe, untreated or inadequately treated hypothyroidism. Symptoms can include confusion, paranoia and hallucinations.

Medical advisor comment

Thank you for sharing your story, and we’re sorry to read how poorly you had become before you were eventually diagnosed with hypothyroidism.

Although we do not know what your thyroid function was doing during and immediately after your pregnancy, it would appear that you developed postpartum thyroiditis in the months after your baby was born. This is a temporary condition that occurs after around 5-10% of pregnancies, typically in women who have thyroid autoantibodies. It usually develops within six to 12 months after birth. In around a third of women affected, it develops into permanent hypothyroidism, which seems to have happened to you.

It is thankfully extremely rare for people to develop such severe hypothyroidism (myxoedema) before their thyroid condition is picked up. Nevertheless, we know that many people are not being diagnosed and treated soon enough. We would urge anyone reading this who has symptoms to see their GP. If your GP suspects a thyroid condition, they should perform a thyroid function test as well as assess any symptoms. This is particularly important in the months following birth.

We know that your thyroid function tests were normal in 2001. When you became very unwell after your pregnancy in 2002 one doctor told you, “It can’t be your thyroid—we checked that before.” The important message here is that thyroid function can change over time and may deteriorate during or after pregnancy.  The 2025 Royal College of Obstetricians and Gynaecologists 2025 guideline on Managing Thyroid Conditions in Pregnancy clearly outlines how thyroid conditions should be diagnosed and treated before, during and after pregnancy and will help women to access the appropriate care.

It is reassuring to read that you have been doing well since you started on combination therapy of levothyroxine (L-T4) and liothyronine (L-T3). While levothyroxine is effective in getting thyroid levels and symptoms under control, it is recognised that around 10-15% of people continue to feel unwell on levothyroxine alone, despite their thyroid levels being well managed.  If your doctor has excluded other possible causes of ongoing symptoms, such as low iron, low vitamin B12, other health conditions and lifestyle factors, then they would usually refer you to an endocrinologist for further investigation. In some cases, this may involve trialling combination therapy to see whether it makes a difference. The BTF has been involved in developing a guideline from the Society for Endocrinology and the British Thyroid Foundation, which covers the prescription of T3. 

Further information and support

Postpartum thyroiditis 

Guide To Thyroid Function Tests

‘Living better with hypothyroidism’ article 

‘Use of liothyronine (T3) in hypothyroidism 

‘If you are unhappy with your care’ article