A routine visit turns life-altering
My name is Gemma, I am 37 years old and from Brisbane. In July 2017, aged 30, I went to see my doctor as my husband and I were planning to start a family, I was looking to get my contraceptive implant removed. My doctor sent me for a blood test which I thought was a standard check to make sure everything was in order. Unbeknownst to me, my doctor had recently read a journal on Acromegaly and had a feeling that I may have it. I had not expressed any typical symptoms and therefore I was very shocked when I was called back to the doctors the next day to discuss my results. I thought I had low iron but that afternoon I was told my growth hormone levels were very high and she suspected a pituitary tumour.
The next few days were a blur of Endocrinologist appointments, MRIs and more blood tests, even the Endocrinologist was surprised my doctor had caught it. In the space of two days I had gone from looking to start a family to being told by my specialist that I may not be able to have children as the pituitary controls menstrual cycles. It was devastating. My MRI showed a 1 cm tumour which was located close to my optic nerve and an artery. Over the next few weeks, my case was reviewed by the surgical panel at Princess Alexandra Hospital, Brisbane and I was advised that we should try for a baby as I had no worrying symptoms and it would be best to try now than after any potential surgery to remove the tumour.
Pregnancy and acromegaly
We were very lucky to fall pregnant less that a month later. As my pregnancy was classed as high risk, I was sent to Mater Mothers, Brisbane and assigned a wonderful Endocrinologist Obstetrician who followed my case. I had multiple gestational diabetes tests and field of vision tests due to the nature of the pituitary gland to expand in size during pregnancy increasing risk of issues with impacts on optical nerve and gestational diabetes. I saw the doctor and midwives fortnightly from 18 weeks along. My pregnancy itself went very smoothly and my daughter was born just over a year after my initial Acromegaly diagnosis. Again, I count myself very lucky.
After my daughter’s birth I expected to be told I would go for surgery, but my tumour had shifted its position and was now closer to the artery increasing the risk during surgery. Instead, I was put onto medication to try and reduce the tumour size and control my growth hormone levels. The mix of postnatal hormones, anxiety and mental preparation for a surgery that didn’t happen had me questioning whether this was right, and I got a second opinion. The second doctor gave the same opinion and even advised the same medication to move onto. I was relieved and started a monthly injections. As a family, we settled quickly into a routine of my husband injecting me each month. No one really discusses the impact that these diagnosis’s have on family members. My husband was hugely impacted, he was never comfortable injecting me but did so every month.
After 2 and half years of monitoring and injections, I attended what I thought was a six-monthly review. We (myself and Endocrinologist) had not discussed surgery since I started the medication, so I was very shocked when he told me that they were scheduling me in to remove the tumour. I felt completely blindsided and not ready. It was the first appointment my husband had not attended, and I left the office in complete shock.
The next few months were the worst since my diagnosis. I met with the surgeon and as I was on the public list for surgery I waited for my date. I was scheduled for surgery in April 2021. I had not expected the amount of mental preparation that happens during the lead up to the date, as well as the preparation for family and work. The evening before surgery I got the call that I had been cancelled, not enough beds on the ward. I was devastated. I went back to work and was scheduled in for the next month. Again, the evening before surgery, I got the call I was cancelled again. I broke down on the phone to the hospital admin. My mental health was at rock bottom with anxiety and stress, and I didn’t think I could go through the mental preparation for another cancelled surgery. The hospital admin apologised and let me know she will look into it. The next morning, I got a call that my surgery was going through private and was scheduled for in 2 weeks’ time.
In June 2021, I finally had my surgery to remove my tumour.
Surgery recovery was not as I expected. I felt completely out of it, lightheaded and lethargic for weeks afterwards. There was very little pain but as they went in transsphenoidal, my nose was blocked for almost two months.
I am now over two years post-surgery. I have not needed to restart medication and am having six monthly check ins with my endocrinologist. My latest MRI shows that there is some residual tumour and scar tissue which combined are still the same size as my original tumour, 1cm. However, my growth hormone levels are still around a normal range, and I still have no symptoms of Acromeglay. Although, post-surgery I have had concerns with very low iron and an abnormal menstrual cycle.
As a family, we have decided that we will not try for another child. We count ourselves very lucky to have our daughter who is now five. This has been a difficult decision, but we do not know whether I could still fall pregnant or whether the risks during pregnancy would be increased with what is left behind.
For now, we are continuing six monthly bloods and yearly MRIs to monitor my Acromegaly, but I count myself very lucky that my doctor was aware of Acromegaly and trusted her instinct in getting that blood test. Who knows what the future will bring but I want to continue to inform others of Acromegaly.