Michael's patient story - macro prolactinoma
I was diagnosed with a condition called macro prolactinoma, a benign tumour on the pituitary gland, in February 2017. When I was informed of this by my endocrinologist, my world caved in. That was it, the end, and my time was up – but how wrong I was!
Working as a Manager for Parcelforce Worldwide in London, means an extremely busy period for me in the run up to Christmas. Despite being an experienced Manager, the stress levels greatly increase at this time and it was during this period that I started to develop symptoms. My thighs were aching and were hot to touch, during the night I would wake up with intense pain in both shoulders, and both arms would be numb and I was unable to move them. My moods swings were somewhat erratic and I was also feeling extremely fatigued, particularly during the afternoons and evening. At the time I put all this down to the extra workload leading up to the Christmas period, so I just carried on as normal.
Looking back now over the last few years, life was like wading through treacle. Getting out of bed to go to work, going to the gym, everything involving normal day to day activities needed a huge effort and a sheer determination to get anything done.
Christmas and the New Year had passed and before I knew it January was coming to an end. However, I was still experiencing these symptoms and was felling unwell so I made an appointment with my GP, who suggested getting a blood test done. A week later I got a call from the surgery asking if I could come in to talk about the blood test results, and an appointment was made for me to see my Doctor
I was shocked to be told that I had raised prolactin hormone levels which were caused by a small tumour, the size of small pea on the pituitary gland which is located at the base of the brain. I thought, size of pea, that’s no big deal and asked what happens now. I was told I would be referred to an endocrinologist and would need an MRI scan.
It was on a Friday afternoon, and as I was walking out of the GP surgery I received a telephone call from an endocrinologist at Hillingdon hospital. This doctor had also received my blood test results and asked me to come straight to the hospital to collect a prescription for hydrocortisone and to start taking them that evening. Her words were, ‘If you don’t, you are going to start feeling extremely unwell, if not already’. We also made an appointment to meet face-to-face early the following week. As I made my way to the hospital. I thought, OK, is there something to worry about here?
I met with the endocrinologist the following week at Mount Vernon Hospital and we discussed the hormone levels. The prolactin level was 7500 which was extremely high and I was prescribed cabergoline and Levothyroxine. My cortisol levels were dangerously low which was why I had been advised to immediately start the hydrocortisone. The MRI scan was quickly arranged which took place at Hillingdon hospital and we arranged to meet up to discuss the results the following week. My wife and I attended the appointment at Mount Vernon Hospital and the image shown to us on the screen of my head sent me into a deep panic. I thought that was it, the end, and my time had come. Whatever was said after that was a complete blank and we walked out of there in a state of confusion and shock. Thankfully, the doctor arranged to meet me the following day to go through it all again, this time I was more composed and was able to take in the information.
The benign tumour was 4cm deep and 3cm wide, some small pea I thought; it was bleeding and was touching the optic nerve, now I’m worried. A peripheral eye test was arranged at Hillingdon Hospital; gladly and luckily my vision was normal and still is. Further blood tests were arranged in quick succession to see if the cabergoline was reducing the prolactin hormone levels, which they were. However, eight months later the levels had slightly risen and my cabergoline medication was increased. Gladly, a further blood test revealed the level had lowered to 247, between the normal ranges of 56-278. I was also prescribed Testogel as my testosterone was still on the low side, I have now been given the injection as opposed to the gel.
The second MRI scan indicated that there was no reduction in the size of the tumour which was disappointing, as it was thought that in 90% of patients the cabergoline would have reduced it; thankfully the bleeding had stopped. My endocrinologist then referred me to see a Neurosurgeon at Charing Cross Hospital who seemed somewhat surprised that apart from the symptoms mentioned earlier, I had no headaches and my vision was excellent. A further MRI and peripheral eye test was arranged, and again my eye vison was excellent although the tumour had still not reduced. On my second visit to see the neurosurgeon, we agreed for the best to hold off from any operation.
Dr “No visual problems or headaches so why go in to remove it, risk damaging the optic nerve or damaging the pituitary gland even more and ending up on more medication, if you were then we’d go in to remove it”
I had been preparing myself for the doctor to say ‘let’s get you in and operate’, so I can tell you now that I didn’t take much convincing that this was the best outcome for the time being.
The last of five MRI scans within 10 months was in early December 2017, which revealed that the tumour has still not reduced however, as long as my eyesight is in good order and I’m not experiencing any headaches I’m content to not have the operation and happy to carry on as normal, for now. I now have three monthly blood tests followed up with an appointment with my endocrinologist; my next MRI is booked in for December and I will also have a bone density scan (DEXA)
The Pituitary Foundation website is a great source of information and the support that’s offered from them is amazing. I have attended two different meetings arranged by The London Pituitary Patients Support Group (LAPPS) and it has helped me very much to understand the condition in more depth, and to also meet others who have this condition.
I’m working full time and I’m lucky that my manager has been very understanding and I’m permitted to have time off for hospital appointments, etc. Research shows that if you are able to start work as early as possible, you will greatly benefit from it, and I consider myself quite fortunate that I have a work start time of 6am and I finish by 2pm, so any fatigue creeps in when I am at home. Although obviously the downside to this is that it can affect my social life, but I consider that a small price to pay.
For me, life goes on pretty much as normal, albeit with caution. I take my medication religiously, I wear my medical bracelet and carry my emergency hydrocortisone injection kit around with me. I also I make sure that I visit my doctor whenever the need arises. I work tirelessly at my allotment and gain great pleasure from this. I have now been given the all clear to fly and I am very much looking forward to a family holiday in July, to the island I love most, Kefalonia. Of course ensuring with military precision that I have followed the medical guidelines for overseas travel!
Looking back over the last eighteen months, I realise that actually I am lucky. I now know what was causing my many ailments, my mood swings have gained balance, meaning my wife is more able to deal with the odd tantrum and forgetfulness. I have gained invaluable knowledge about my condition, allowing me to understand my body and what it is telling me. If I could give advice to anyone who has been diagnosed with macro prolactinoma, it would be to listen to your doctors, trust their guidance, go to The Pituitary Foundation website, but most of all enjoy life to the fullest.