I have an inherited autoimmune condition that I know is on my father’s side of the family and I’ve passed it onto my son.  

As a child I did not feel all that well, but in the late 1950s children were seen and not heard. Then, I was totally unaware of the issues my emerging hypothyroidism would cause. 

As an adult I married Martin and we decided to start a family. After having difficulties getting pregnant naturally, I was given fertility treatment, and after a miscarriage at seven weeks, our first child was a daughter born with a heart condition, Tetralogy of Fallot. As a child I was diagnosed with a heart murmur.

Our daughter became one of the ‘Bristol babies’ and died at the age of 16 months during a 16-hour heart operation. At the time of our daughter’s death, I was pregnant with my son. I asked a doctor if he thought the stress, I was under would affect the birth of my son, to which he replied - no.

Hashimoto's thyroiditis

My son was born at 32 weeks, exactly one month after our daughter’s death, and was transferred from Exeter to Plymouth ICU with fluid on the brain (hydrocephalus). I was eventually diagnosed with Hashimoto’s thyroiditis – a form of hypothyroidism four years after my son was born. I really believe that if I had been diagnosed sooner, I would have three grown up healthy children with me today, and grandchildren, which is something I really miss. Our son is now 29years old, has special needs and Hashimoto's thyroiditis.

Because of my heart murmur I am unable to take the recommended dose of levothyroxine (LT4) because it can trigger palpitations. But I was neither offered an alternative thyroid hormone, nor told they were available, and struggled for several decades. 

When social media became available, I read about other treatments for hypothyroidism, that included natural desiccated thyroid (NDT), and synthetic liothyronine (LT3). I asked for a hospital referral, but the consultant told me it was not their policy to provide NDT or LT3 on the NHS, so I started seeing him in his private clinic, based in the hospital. 


My consultant eventually put me on his NHS list as it was becoming too expensive to pay for mine and my sons LT3. The consultant eventually asked my GP surgery to prescribe LT3, but it refused. When I persisted, I was hit with a letter stating that I was not to talk to them any more about my thyroid condition under threat of being removed from the surgery’s patient list. I was also banned from seeing my favourite GP.

Last year my endocrinologist eventually agreed in a phone call to allow me to have a three-month trial of LT3 as an NHS patient. I hadn’t seen him for a couple of years due to the pandemic, and I was very excited at the prospect of seeing him and getting LT3 on the NHS. But when I travelled over an hour to see him to get my latest blood test results and discuss the trial, it didn’t get a mention. I mentioned it but he denied he had agreed to such a trial and that I was there just so he could check my bloods! I told him I'd come all that way to talk about the T3 trial. He promised to let me know the results of a meeting he was having with his colleagues, but I haven’t heard from him since seeing him earlier this year.

Postcode lottery

Now, I feel I am without any support for my thyroid condition.  I don't think this is what patient care is meant to be about. 

LT3 is on the Drug Tariff and in the British National Formulary and many other patients around the country are prescribed it, so it is a postcode lottery as to who gets it and who doesn’t.  

I am now left with no choice but to buy LT3 off the internet, which I am obviously not happy about doing, to keep well and to be able to continue to look after my son and husband.

Hypothyroidism affects up to 2 people in 100 (mostly women) and on Facebook there are fast-growing patient support groups. Many of the group members like me feel badly let down by their GPs and endocrinologists.

My hope is that by writing this blog it will bring the issues surrounding the lack of communication among the medical profession and their communication with me and my son’s disease more into the public domain and help to raise awareness of the importance of shared decision making between patient and the healthcare professionals, since this not what I have experienced.

Jane Chapple