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The story of my pituitary tumour

Headache

A year before I was diagnosed with pituitary tumour, I was having a constant nagging headache from my left eye towards my temple. It can last from few days to weeks and I remember the longest was 2 months. I thought it was due to the high level of stress from the progress of building our dream home and subsequently moving in that has caused the headache. Not abnormal as I usually gets migraine whenever I stressed out. But it will be gone once I am out of the stress condition. I thought it was my glasses that needed a new prescription since my sight has worsen in the past months. I went to an eye specialist and enquire about the relation of the headache with bad eye sight. She advised me to see a GP.

However once we moved into our new place, the headache has since gone so I wasn’t really worried about it.

Hair Loss

Few months later, I started to lose a lot of hair. The hair loss was quite extreme to an extend my family commented over it, repetitively. It upset me pretty much as my hair has gone so scarce that I even have the ‘M’ hair line on my forehead!

So, I went searching for some anti hair loss shampoo and I found one that really really works! Pura D’or.

My hair loss reduced after a month of using Pura D’or and within 3 months, my hair is back to the normal stage! My ‘M’ hair line has become smaller and I was happy to see so many fly-away small regrowth on my scalp.

Missing Period

At the 3 months stage, my period suddenly became irregular to a stage of having it twice in a month to slowly missing for 3 months. I thought it was so strange and was hoping it was not due to the Pura D’or as it was marketed to have some DHT hormone blocker. Something to deal with hormonal issue apparently. So I stop using it for a month or so to see if my period returns. Nada! And, my hair loss continues!

Visit GP

I’ve visited my GP to see how to deal with my missing period issue. In the past, whenever I was stressed out, period can go missing for 3 months and it’ll be back. Once, GP prescribed a medication that encourages the period to return and it solved the problem. However, this time my GP has requested for a full blood test including hormones after asking a few series of questions. She was suspecting a condition however, she has kept it to herself at that visit to wait for the test result.

Blood Test

Blood test result was out and my GP called me in to talk about it. Something is not right. On my visit, the blood test result showed a very high level of Prolactin and DHT hormones. She concluded that this may be related to a small growth in my pituitary gland. Assuring me that it is benign and usually if it’s a micro can be control by medication or a surgery if it’s a macro. At this moment, it’s really difficult to explain how I was feeling but I was shaking internally and yet trying to be very positive about it with hope that it was just hormonal and no growth. I kept thinking, I thought I’ve watched this type of scene in a lot of dramas and never thought it is happening to me!

I was sent for a Brain MRI scan.

Brain MRI scan

As it was my first time, I thought it was a very terrifying experience. Imagine having a machine running so loudly so near your head that they have to put a headphone on you because it was so damn loud! You are forced to lay so very still so they can scan 12 images (I think it’s that many!) and no blinking or moving your eye lids so they can get really good sharp images, else redo! I was injected with a liquid that will assist in the scanning as pituitary gland is such a tiny part and with any small growth, nothing will show up in the normal scan.

Next visit with GP

I was called in to talk about the MRI scan.

Unfortunately, a 3mm growth is found in my left pituitary gland. Not pushing onto optic nerves and since it is smaller than 1cm, it is a micro growth. I was referred to an Endocrinologist instead.

Visit with Endocrinologist

It wasn’t until a month and a half later was I able to see an Endocrinologist. Booking for an earlier appointment with any Endocrinologist seems to be impossible as all of them from within my area to 50km away are fully book till 4 weeks ++, and some popular ones even months! It was very unnerving as I was getting really paranoid knowing a growth inside my head and yet, I have to wait so long to visit one. Apparently, this is expected if it’s your first time of visit. The next visits will all be scheduled.

On the day of my visit, my Endocrinologist explained about the whole pituitary gland thing and how it affects our endocrine. In fact, sometimes PCOS may be the cause of it but my result seems to be pointing towards a pituitary tumour which has been confirmed in MRI scan. He wasn’t really worried about the 3mm growth stating that years ago, when the MRI technology was not very advance could not have pick up the tiny growth and many people lives a long life without knowing they had one. So he prescribed cabergoline. He said it’s the same medication doctor prescribed to breast feeding mum when they want to stop milking, with the same dosage (5mg / week).

Based on his explanation, I’ve requested for a Pelvic Scan (Uterus) to check if I have PCOS.

Cabergoline

I was told to take 5mg / week till my next visit with Endocrinologist in 3 months time. A blood test should be done before seeing him.

Side Effects

Other than being hungover the next day, I kept feeling my heart is pumping out of my rib cage every night. It got to a point that it caused me so much anxiety that I almost had a panic attack. I couldn’t sleep at night because I can literally hear my heart pumping so hard and loud. Bumping onto my rib cage! It continues to second day and I won’t feel it anymore.

I suddenly developed sinus problem on the very next day I took cabergoline. It started on the third month onwards. I did a search through the Facebook Group I followed and can confirmed a lot of others experienced the same thing as well.

Blood Test & Second visit with Endocrinologist

The blood test shown the prolactin level has gone down but not to the standard level. My Endocrinologist has requested for me to increase my dosage from 5mg / week to 7.5mg / week. I was thinking that I cannot deal with higher dosage because of the heart beating problem but my Endocrinologist told me to break it down across the week rather than taking it at full dose. I was told to try the new dose for a month and take a blood test again, and he will give me a call when he got the result.

The Pelvic Scan returns normal.

Side Effects

I did as prescribed and my sinus when crazy a few notch!!!! I have to constantly use the Decongestant spray and pills to stay sane! My eye bag was so swollen due to the sinus problem that make me looking so haggard! I am still struggling now.

A blood test & a call from Endocrinologist

My blood test showed my prolactin level has gone to the standard level. YAY!!

But I am told to take the 7.5mg / week till my next visit with him (6 months later). WHAT?! I thought I can reduce it to 5mg / week or much lesser! Argghhh!!!

To be continue…

 

 

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