Grace is now 14, but she was diagnosed with a Macroprolactinoma in March 2023 aged just 13 years old. I originally took Grace to the GP expressing concerns around her absent menstrual cycle, extreme fatigue and unexplained weight gain. We were told it was likely nothing to worry about and all part of being a teenager and normal hormonal changes. As a precaution they did however refer us to Paediatrics at our local hospital.
Once seen at the hospital the consultant noted Graces symptoms, took some bloods and predicted she may have Polycystic Ovarian Syndrome (PCOS) and requested a pelvic ultrasound. However, within a week we received a call from the consultant to say her bloods were showing extremely high levels of the hormone Prolactin (27,000) and that they suspected she may have a tumour on the Pituitary Gland! Within a few days, an MRI scan was arranged, and it was confirmed as a Macroprolactinoma measuring almost 2cm, it was also putting a lot of pressure on her Optic Nerve and causing Galactorrhoea (milk production). Grace immediately began treatment of Cabergoline twice weekly to treat the Hyperprolactinemia caused by the high levels of prolactin and with the aim of reducing the size of her tumour.
The response to the medication was great to begin with but then she was showing some resistance, resulting in the need to increase her dosage which caused worsened fatigue and alterations in her mood. As a result of the psychological and physical side effects of having the tumour, and the side effects of treatment, Grace hasn’t been able to attend school on a full-time basis at present.
Graces most recent MRI scan has shown a 5mm reduction in the size of her tumour and bloodwork shows her Prolactin levels are falling but still not within normal range as of yet.
Having a Pituitary condition can be such a scary and daunting process pre, during and after actual diagnosis. As a parent I knew there was something not quite right and I would always say trust your instincts and demand further investigations if at all in doubt.
The psychological effect of having a Pituitary Condition can be huge especially for Grace as a teenager. It is quite rare and the support from The Pituitary Foundation has just been amazing in helping us to understand the condition and the impact it does have.
She remains under the care of a fantastic team of Consultants, Professor, Endocrinologists and Ophthalmologist for her treatment and scans as this is a lifelong condition.
Grace recently held a charity evening to raise awareness and managed to raise over £2000 for the foundation which included huge support from local businesses and also a favourite of Graces – Made by Mitchell (Make-Up). Mitchell Halliday who has a huge social media following kindly gifted a selection of his products for the raffle and has been a huge support to Grace throughout her journey. We hope funds raised will be a huge help in providing support for others in similar situations.
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