HELP - Pituitary Tumour!

[Four Litre]

Well after a few years of feeling rough and so tired I often couldn’t think straight, my blood levels came back with Low testosterone, so low in fact I was off the scale!

This led to more head scratching and eventually an MRI on my brain. Hearing the specialist tell me that I they found a 5mm tumour was a mixture of elation and major concern that we found the reasons for me feeling so ste, but also being a tad scared about having a tumour in my head! The on-going plan is for me to have another MRI in 6 months and then yearly to check for growth. Worst case an operation to remove it, for the records 99.9% of these tumours are benign but can cause havoc by stopping or changing hormone production for all sorts of functions in your body.

I’ve kicked off TRT and am still waiting for any benefits (only 3 weeks in) but have also developed Diabetes Insipidus and am off to see the specialist next week to discuss treatment. Has anyone ever had this and if so did it get resolved / managed successfully? Currently I can’t be without a drink of water for 5 mins without a mouthful of dust!! I’m also spending more time in the toilet boring a hole in the china than I would prefer!

Any words of wisdom from other pituitary tumour sufferers welcome!

[BarryP]

I started suffering with minor headaches for several years and eventually began to realise my peripheral vision was deteriorating. After several doctors and hospital appointments, and an MRI scan I was diagnosed with a large pituitary tumour, 23mm in size. I was sent for surgery at the John Radcliffe in Oxford neuro-surgery unit where a brilliant surgeon called Simon Cudlip sorted me out. I had the surgery six years ago. With a pituitary tumour the surgeons enter the skull through the nasal cavity and then into the sinuses before accessing the cranial cavity. After removing the tumour an ear,nose and throat surgeon assists the neuro surgeon to rebuild the nose. I knew that post operative care included plugging the nose with a gauze pads until the nose cavity had healed but the removal of the plugs was extremely painful, one lady who I met told me it was worse than child birth! Simon tried a new technique on me where after the nose had been reconstructed they used surgical superglue to prevent the brain fluid leakage.
Depending on they type of pituitary tumour and how successful the surgery is, it is difficult to judge the possible outcome, I was extremely fortunate as after the surgery my pituitary gland started working and the only hormones I now take are testosterone gel. All the other pituitary related hormones are working fine. I have regular blood tests and a yearly MRI to check no further growth has occurred. My eyesight peripheral vision improved as the optic nerves were now no longer being stretched by the tumour pulling on them.
I no longer get headaches and feel much better in my normal everyday life. I'm sure that with your small tumour you will be monitored closely but it will only move to surgery if it grows much larger.

[Four Litre]

Thanks Barry - good to hear a success story.

Did the fatigue pass - that's my biggest killer, gone from running 10m+ a week to nothing as just don't have it in me.

[c8bof]

I was diagnosed with a 10mm pituitary tumour in 2006. Different symptoms - I'm female! Treated with cabergoline and regular MRIs and blood tests. Tumour has now completely vanished and I've been off the medication for a number of years. Still get an annual review by the endocrinologist.

I found The Pituitary Foundation to be an excellent source of support and advice. Lots of first hand experience of DI.

Good luck!

[Four Litre]

c8bof said:

I was diagnosed with a 10mm pituitary tumour in 2006. Different symptoms - I'm female! Treated with cabergoline and regular MRIs and blood tests. Tumour has now completely vanished and I've been off the medication for a number of years. Still get an annual review by the endocrinologist.

I found The Pituitary Foundation to be an excellent source of support and advice. Lots of first hand experience of DI.

Good luck!

Good to hear it worked out for you.. Do you recall any of the symptoms? Mine is constant fatigue. Managed to keep working but only just (self employed!)

[c8bof]

Four Litre said:

Good to hear it worked out for you.. Do you recall any of the symptoms? Mine is constant fatigue. Managed to keep working but only just (self employed!)

It was discovered because I was leaking breast milk - and I definitely wasn't pregnant! I had also been having very bad sinus type headaches which stopped after the tumour started to shrink. The consultant said that was a coincidence but given that the tumour was growing over and into the top of a sinus, I'm not that inclined to believe him. Fatigue was a constant with me but that may have been linked to an underactive thyroid which was diagnosed at the same time since they were doing all sorts of endocrine tests.

The cabergoline treatment was tough (hardly comparable to surgery, to be fair) - started with 1 tablet, taken twice a week which said a lot for the content and strength of it! Every time the dosage was increased (by half a tiny tablet), I was knocked for 6 and ended up sleeping at my desk at work.

I go annually for a review and blood tests now.

[BarryP]

Four Litre said:

Thanks Barry - good to hear a success story.

Did the fatigue pass - that's my biggest killer, gone from running 10m+ a week to nothing as just don't have it in me.

I can't say that I felt particularly tired all the time, I was working full time and racing single seaters at weekends! Biggest difference after the op was no more headaches and my eyesight improved.