Disclaimer: This article and interview is based on individual experiences. Any medical questions, diagnosis, and treatment should be discussed with your physician.
“I’m going to give you an MRI referral.” is what my primary care doctor said over the phone after receiving my lab results in late January 2021. But to get to this point, where I felt my heart drop, we have to go back in time.
I do not like going to the doctor. After a childhood plagued with bronchitis, asthma, and allergies, I try to avoid it. Not to mention that healthcare costs make it less appealing. But, I finally got around to scheduling an annual checkup in early 2021. Something was telling me to. I am a believer in following your gut and listening to your body. And while I can admit the pandemic did affect me; physically, I felt something was off.
I was experiencing horrible headaches, migraines which I never experienced before, I was extremely fatigued. It would be noon and I felt like I couldn’t function anymore. My vision at times became blurry. I was experiencing brain fog during the day and insomnia at night. I had aches and pain in certain areas. Why does that hurt? Is this normal? Why is my menstrual cycle off? Why am I losing so much of my hair?!
It’s pandemic fatigue. I thought. You’ve been sitting in front of the computer too long. My hairstylist said people go through hair shedding periods. It’s stress. I told myself. But deep down I knew it was something else. I was not feeling like myself. I knew that once I went to the doctor, they would find something.
So back to that fateful day. Your prolactin levels are elevated, she explained. I quickly googled what that is. According to healthline.com, Prolactin is produced by the anterior pituitary gland in the brain. It’s also known as PRL or lactogenic hormone. Prolactin is produced in response to late-term pregnancy and signals your body to produce milk. I was not pregnant. As I read the causes and effects, my heart sank as I saw “pituitary tumor”.
Fast forward to the results of my MRI in late February 2021. “You have a microadenoma” (a benign tumor located in the pituitary gland smaller than 10 mm) my doctor said when she called. While at this point I was not completely surprised to hear this, it was still scary because there is something in my brain that does not belong there. The pituitary gland which is the size of a bean – “coordinates and controls: growth and development, organ function (kidneys, breasts and uterus) and gland function (thyroid, gonads and adrenal glands). I was thankful that it was caught sooner rather than later. These tumors can grow to a larger size and are referred to as a macroadenoma. And in looking at the functions and the symptoms associated with pituitary tumors as noted on American Association of Neurological Association, they can impact your body in several different ways including: Vision problems (blurred or double vision, drooping eyelid), headaches in the forehead area, nausea or vomiting, impaired sense of smell, sexual dysfunction, depression, fatigue, infertility, growth problems, osteoporosis, unexplained weight gain, unexplained weight loss, easy bruising, Aching joints, carpal tunnel syndrome, disrupted menstruation, early menopause, muscle weakness, galactorrhea (spontaneous breast-milk flow not associated with childbirth or the nursing of an infant)
Additional lab tests were ordered to check my vision, kidneys, thyroid, and uterus. As I went in the next few weeks, I had to affirm every time that I was not taking any over the counter medication or birth control that could impact my hormone levels. And yes, while the process in figuring out what was going on with my body was frustrating, and I cried plenty of times, at the end of the day, I am grateful that my primary care doctor took action and gave me the additional referrals to ensure everything was checked out.
As I waited for labs and an appointment three months away with the endocrinologist; I scoured the literature for more information on pituitary tumors and prolactinomas. A prolactinoma is a type of tumor that causes the pituitary to make too much of prolactin. My search was not as fruitful as I hoped. While I did find research and a few medical articles, I did not see any non-academic books that I could read. Medical web pages gave general information and most noted tumors as treatable and not cancerous.
My endocrinologist, a lovely doctor, who assured me I would be OK, and this wasn’t life threatening, and medication could be prescribed for it. But I immediately heard,” it’s too small to be having vision problems. No, it’s not related to your pain; (that symptom) is not in any literature.” And that is what brings me to the second half of this article.
No…I thought. It’s not in the literature. And that is exactly the issue, I hoped to find literature for myself as someone who is not in a medical field. But I had found support groups on Instagram and Facebook. And let me tell you, I’m grateful I did. All those symptoms I was having that the doctor said were not related? Multiple posts with comments and questions on the same thing I was wondering about. As I went through more comments and posts, I read about doctors dismissing an individual’s concerns and symptoms, refusing to prescribe medication because levels weren’t elevated enough, and symptoms not being diagnosed for years alongside tales of finding a doctor who did listen to symptoms and concerns, relief in receiving a referral, and comfort of finding a support group.
This is not a straightforward diagnosis, I thought, and it seems to affect individuals in different ways. The endocrine system is intricate with many interconnections. Someone in one of my support groups recommended a documentary that was recently released on Netflix, The River Runner about expedition kayaker Scott Lindgren who was diagnosed with a pituitary adenoma and originally kept it a secret. Along with watching this film, I decided to reach out to the group admins to share their experience with me for this article, both whom were diagnosed with a prolactinoma.
Jordanne’s page can be found on instagram: @prolactinoma_infertility
Rachel’s page can be found on instagram @myjourneywithbob
They both live in the UK and generously agreed to share their experiences with our readers.
Did you have a positive experience with your doctor in the diagnosis of your prolactinoma?
Rachel: Yes eventually, but it took a long time, a lot of frustration and upset, and a lot of doctors to get there. I’d been complaining of associated symptoms for many years. Doctors would carry out standard blood tests, which would come back normal (or close to normal), then I would get dismissed. I didn’t know at this point that my prolactin levels had been on a steady upward trajectory over the last couple of years as no doctor told me this. At one point the levels were above normal (I believe my natural normal is quite low), however my local health authority only treats above a certain level. Again, I was just sent away with no monitoring, despite my records clearly showing my levels were increasing year on year. One of the only checks I was given was to check for cancer as I was producing breast milk 10 years after giving birth – if that isn’t a red flag that something is wrong, I don’t know! One of the things that made my diagnosis difficult was that one of the main symptoms that most people have, losing their periods, never happened to me and that seemed to be the big curveball that threw doctors off the scent. I gave up for a few years and just lived with it to be honest. But in 2020 things got a lot worse. Luckily it was during COVID-19 and working from home, as I would never have been able to cope with the commute to work. It got so bad I could hardly write or make my brain work. The fog was so intense. I was pretty much a 20% version of me. I’d been so used to coping and getting on with it I hadn’t realised just how bad it was. If I went food shopping I would have to sleep or rest for a couple of hours afterwards for example. I got desperate again and paid for a whole host of private blood tests, which were expensive but worth it. It was then I realised just how high my prolactin had gotten. I remember a tearful conversation whilst standing in a pumpkin patch over Halloween of all places – it just happened to be when the doctor called me and I wasn’t going to waste the opportunity. I spent 30 minutes listing all my symptoms to a female doctor that listened. She took my case and made things happen. I’ll be forever grateful to her. I ended up seeing an endocrinologist quite quickly afterwards (it was through private health insurance here in the UK – if I had been waiting on the NHS during these times I may not have even been treated yet). It hasn’t all been smooth sailing, but I’m medicated now and my levels are within normal. I had two appointments with the endocrinologist, I only had the second one as I pushed for it, but then I was immediately discharged to the care of my doctor. I also had an MRI which found a 5 mm microadenoma on my pituitary gland. There isn’t much aftercare and definitely no support given. I had a blood test a few months after starting medication and a year after medication I’ll have an MRI to see if my tumour (I call him Bob) has shrunk.
Jordanne: In all honesty the way I found out was a little bit unusual. I thought I was going for a blood test to check my iron levels as I have always suffered from anemia but a few weeks later, I received a telephone call telling me I had a brain tumor. There wasn’t any further explanation. I was inundated with fear as I didn’t know at the time if it was cancerous or benign. I received letters from the hospital which stated I had to go for an MRI scan to see what size it was. Unfortunately, on my first scan the doctor wasn’t able to tell so I had to then go back again to which they injected dye (contrast) into me, so they could see the size. It was only then that the doctor explained to me what prolactinoma was. It was explained that it was a small tumor in my pituitary gland which causes loss of periods and milk production in the breasts but I didn’t have any of these symptoms, I just had no menstrual cycle but thought this was due to the anemia.
I personally felt that there was a lack of literature about prolactinomas, the majority of the information that I have found has been on medical websites (whose information is straightforward and treatable but I feel there is so much more to it. Such as fatigue, headaches, just not feeling well or myself. What are your thoughts?
Rachel: The list of symptoms that you find on the internet are so generalised and really minimise the human effects and issues. It’s hard to find real life experiences and understand the real-life impact of having this condition. There really doesn’t seem to be one size fits all. I guess, quite often, people also have associated conditions too. However, I was interested to find out from Facebook groups that developing strong food intolerances is a common trait – many with this condition have digestive issues and end up giving up wheat and dairy (like myself). There also seems to be a segment of women who have developed this condition post pregnancy. I’m no expert of course and I’m not medically trained, but it does seem like not that much research has taken place.
Jordanne: I don’t feel the Internet fully explains what prolactinoma is. I struggled very badly with my mental health due to having too much Estrogen and progesterone as my body thought it was pregnant. I was In a very dark place at times and when speaking to the doctors they told me it wasn’t a side effect. I changed into a completely different person and I was mad at the world and myself for no apparent reason. I had become very bitter and had turned into a shell of the person I once was. At the time I thought that was just the person I had become. I struggled a lot with my memory at one point I wasn’t able to remember what I had done that previous morning and again this isn’t noted as a symptom. I would get so tired I wanted to sleep all the time before being diagnosed and once I was, I struggled as I had a feeling of being hungover every week after taking my medication but without consuming the alcohol. I would wake up with a pounding headache and would feel groggy and tired. This feeling has reduced massively now, I only seem to get this when I don’t sleep well or don’t sleep for 8 hours. I imagine there isn’t enough research on prolactinoma and that’s the main reason for not listing all the different potential symptoms and with different sites being very vague about what prolactinoma is. Although there is a very long list of side effects with the medication I am taking, the side effects I had were never listed.
What made you start your IG account?
Rachel: I don’t tend to talk about my condition much in my real life. I guess it’s a combination of not wanting to be a drain and also not really having that many people around me that ask how I’m doing. I think they see me looking OK and make a presumption. I do tend to just get on with things also. People don’t understand the tiredness, the hormones, the foggy days where you just can’t make your brain work at all. This is an outlet for me to express what’s going on, what I’m experiencing and how I feel at any given time. And I can do it without having to rely on an actual person in my real life. It’s also about sharing my experience to help others and connecting.
Jordanne: I know prolactinoma is rare, I think it might be 1 in 10,000 so I wanted to see if there were others like me out there who had been diagnosed with prolactinoma. I also wanted to be a support for others as I know first hand it can be hard going through something like that and it can feel lonely. I have also really struggled with Infertility and I wondered if this was issues other people face, even though i have monthly cycles and have had for 3 years if I miss a dose of my medication it doesn’t arrive, so I rely on my medication to keep my cycles normal but I still suffer with Infertility.
What do you wish or want people to know about prolactinomas?
Rachel: That it’s complex and not as simple or lacking in symptoms as a quick google search will say. They have wide ranging effects and impacts on people’s lives. It’s not clear cut. One day you’ll feel great and symptom free, one day you won’t. Some women have great difficulty conceiving with this condition – which wasn’t my experience as I believe my condition was triggered post pregnancy – and the devastation from that can be immense.
Jordanne: I want people out there who have prolactinoma to know everything will be OK, reach out to someone, even if it’s someone you don’t know, talk to them and explain your feelings. It’s OK to not be OK.
Please share any other thoughts you may have.
Rachel: It would be helpful if more could be understood on a human level about this condition, if there could be help post diagnosis and if alternatives to being long term medicated could be explored. For some, the medication side effects can wreak as much havoc as the condition. In the UK it’s unusual to operate, which I think is more common in the US. Understanding more about how stress affects this condition, how herbs can be used etc. would be useful.
Jordanne: I am thankful for the medication I am taking, it has changed my life. I take half a tablet of cabergoline once a week as it stays in the body for 10 days I think. It massively dropped my prolactin levels and it helped to get rid of the problems I was having with my mental health, memory and headaches. I still have a couple of days a month where I am so tired I could just sleep all day but I’ve accepted that it’s just one of those things that I will have to live with, I also still have a poor memory but it’s nothing like it was before I was diagnosed. I do memory games to help myself. Once my body adjusted to the medication I completely changed as a person and I had a spring back in my step. I have never felt better than I do now thanks to cabergoline.
As both Rachel and Jordanne explain, and as I’ve experienced, this pituitary tumor affects everyone in different ways. And there are no two days that are alike. Since my diagnosis, I’ve had days that are better than others. When I first started my cabergoline medication, I was experiencing side effects that felt awful. I was nauseous and dizzy after taking it. I was even more exhausted, losing weight, and had more headaches that I thought would be going away. While it took a few months, and doctor follow-ups along with additional labs, the side effects have started subsiding and I am still in communication with my doctor to make sure we are on a path that is helping me. I also started going to a practitioner for additional supplements and acupuncture treatment. I do think that while this is a long term prognosis, knowing you’re not the only one has been a great comfort. My support system has been wonderful and I’m not letting this little sucker win. So – bring it on.