My story

Diagnosed with a tumor

I had just turned 19 (early 2005) when I was diagnosed with Hyperprolactinemia. At that point my menstrual cycle did not exist. It didn’t bother me and I wasn’t really worried, until one day I read in a magazine about a young girl who had gone into early menopause. At that point I realized that something could possibly be very wrong and more serious than I could imagine.

A blood test showed that my prolactin levels where through the roof (>6000mIU/L where normal is below 400mIU/L). The doctors immediately suspected that I had a little tumor on the pituitary gland. An MRI-scan confirmed this. I was sent to an eye doctor to check if the tumor was putting pressure on the optical nerve. I also had a field of view test done.

I started on the medication Cabaser shortly after (2005). My initial dose was 0.5 mg per week and was slowly increased to about 1 mg twice a week. By 2012 my dose was 1.5 mg twice a week.

My condition was gradually worsening. My everyday life was increasingly influenced by both physical and mental pain. I suffered from chronic constipation, brain fog, fatigue, bloating, stomach pain and headaches. Sometimes my heart would beat so fast I felt like it was coming out through my chest. It could take me hours to eat a meal because it felt like the food was stacking up in my throat and blocking my airways. Many times I couldn’t figure out if I was hungry or full. I started having some kind of anxiety attacks when out in public and I’m pretty sure I bordered a depression.

6 years later – life style change

Spring of 2011 I was three months in Africa and when I returned I was a different person. I wasn’t constipated, wasn’t tired, full of energy and thought my life had finally changed to the better. I had a blood test done immediately after I returned home and it showed the lowest prolactin level ever – 1550mIU/L. But it was still too high and despite the significant change I was told to increase my medication dose.

After returning from Africa every symptom came back tenfold. I was right back at square one and I even ended up crying my eyes out in front of my doctor. The doctor ignored me but a nurse suggested a diet change. It was a diet primarily about elimination gluten and lactose. This actually helped as long as I stuck to it, but it was so difficult. This was the first time I have ever really tried changing my diet. It took too much energy and I ended up quitting the diet.

It was very difficult to get the doctors attention and I finally demanded to be tested by a specialist. A blood test showed no sign of celiac disease or gluten intolerance. I was tested for lactose intolerance and had a sigmoidoscopy done, but all tests came back normal. There was absolutely nothing wrong with me. And yet I was falling apart.

A date to remember

December 21, 2011

This is the day I told my doctor I couldn’t take my medication anymore. I was afraid it was causing my constipation and every other symptom. I was very sick at this point. At a family Christmas get-together someone was talking to me but I couldn’t listen. I remember sitting at the table while moving backwards; the table, my family, the room just got smaller and smaller. I did not feel well. Three days before Christmas Eve I ditched medication even though I had no backup plan. It was just the only thing I could do.

I knew something was wrong and I slowly realized that doctors could not help me. It could only ever be my word against theirs. I don’t know why I did it but I’m glad I did. I called three different hospitals and asked for all the information they had on me. I collected 6 years of prolactin level test results and found a pattern. I was in shock! My prolactin levels had barely changed in 6 years. My medication dose had gone up several times but my prolactin levels had stayed the same. A doctor later agreed that I had not received an appropriate treatment.

At some point I found myself in a bookstore looking for a book about this new dietary movement called paleo. I had never read a book about diet before. This I guess marks the beginning of my self-experimentation project.

My prolactin levels from diagnosis to now:

My prolactin levels.

My MRI-scans (translations of the transcripts describing two of my three MRI-scans):

2005

My first MR-scan from 2005 seems to be lost.

March 2007

“MRI scan of the pituitary gland:

Indication: A 1 cm prolactinoma confirmed 1½ year age, control a part of status.

The scan shows a normal cerebrum. The changes in the pituitary gland correspond to a little residual adenoma of just 4 mm to the right of the back centerline resulting in a slight deviation of the pituitary stalk. No older pictures exist for comparison, but according to the clinical information a blatant reduction in adenoma size has occurred.

Conclusion: There is regression.”

February 2009

“MR-scan of the pituitary gland with and without contrast.

The examination will be compared to the MR from 2007.

Completely unchanged size of the small residual adenoma in the pituitary gland on the right side with a minimal deviation to the left of the pituitary stalk. No pathological changes are seen in the overview scan of the entire brain. Normal width sulci and ventricles.

Conclusion: Status quo. Minimal residual adenoma.”