Carl’s story

Carl reached out to me via Twitter after I asked for people to be featured on my website to show that each individual case of Cushings or Adrenal Insufficiency are completely different. Carl, from Hampshire, suffered from a 3cm pituitary tumour causing adrenal insufficiency and a testosterone imbalance. He tells his story below.

My story started in February 2013 when a fairly routine visit to the doctor resulted in me getting some blood tests done. I happened to mention that I had lost a lot of body hair, it wasn’t even why I went to the doctor in the first place. I didn’t rush to have the test, I hated needles back then.

I had the test around 11am on one day, I had a call at 9am the following day from my doctor….or at least my wife did because I was at work. Can I speak to your husband, where exactly is he and what is he doing right now were the questions my wife received. I’ve made an appointment for him this afternoon, make sure he comes along. My wife phoned me at work to relay this information, the rest of my day was spent worrying and Googling possible illnesses.

I visited the doctor as planned and he told me I had very low Cortisol and Testosterone levels, he was very concerned about the low level of Cortisol. In fact my Cortisol was so low the doctor didn’t really understand how I was still walking. He immediately prescribed me Hydrocortisone tablets which would replace my Cortisol and booked lots more blood tests and an urgent referral to an Endocrinologist in the nearby Portsmouth QA Hospital.

The first few weeks on Hydrocortisone were very odd, it was like something in me had not only woken up, but gone into overdrive. I was hyper and it wasn’t a feeling I was used to, in the years leading up to this point, I was not a ‘hyper’ person. I hadn’t given it much thought as to why, just that I must be getting old and slowing down and this was to be expected. Of course with hindsight there were various symptoms I had discounted or ignored. I had several near fainting episodes, the loss of body hair, weird vision at times, constantly feeling cold, poor fitness and loss of muscle, extreme lethargy, a general lowering of my outlook on life…very negative attitude. Not so much a ‘can do’ attitude, but a ‘can’t do’ attitude! It is a wonder my wife didn’t divorce me.

My Endocrinologist appointment with Dr Partha Kar came up in April 2013 and he saw me and baffled me with lots of terms and phrases I’d not heard before. He was fairly sure I had a pituitary tumour, or adenoma as he called it. He needed to send me for an MRI scan to be sure. At that point I heard the word “tumour” as I’m sure a lot of pituitary patients do. I was told not to worry as 99% of them are benign, but of course I did worry. Actually Dr Kar was a complete godsend, he helped me through my journey and I feel very lucky to have him as my consultant.

The next part of the story happened really quickly. 18th May 2013 MRI scan, 24th May appointment with Dr. Kar confirming a 3cm non-functioning macro-adenoma affecting my optic nerves and then 25th May (a Saturday) a call from the Wessex Neurological Centre in Southampton hospital to come in for an operation, which happened on the 28th May 2013….a date I will never forget!

The operation (via my nose) was a success and the neurosurgeon Mr Mathad felt he got almost all of the tumour. I spent 5 days in hospital and felt relieved to get home. However that was not the end of the story. On 22nd June I was admitted to hospital again, and it was not a good visit. When I was first discharged from hospital I was given all the ‘sick-day’ rules about doubling up on Hydrocortisone but at that point I hadn’t had the education about an emergency steroid injection if I needed it, nor did I have the injection kit. I had been feeling unwell and it turns out I had laryngitis and pharyngitis infections and they were running riot through my system, which was already at a low ebb having had my operation. What I then suffered was an adrenal crisis because my body could not cope with the stress of the infections, however we did not recognise that. I was vomiting and not keeping my tablets down, so my wife rang the out of hours doctors service (June 22nd 2013 was a Saturday) and explained my predicament. Luckily the doctor recognised the seriousness and booked me straight into A&E and sent my wife off to hospital with me. To be honest I don’t remember very much about that day or the next couple. I spent another 5 days in hospital. So far it has been my only adrenal crisis thank goodness, although I am much more informed now and do have my injection kit.

The most sobering thought from this whole episode looking back was the difference between recovery from a pretty major operation and an adrenal crisis. After my initial operation, I felt a bit weak, but otherwise not too bad considering. A bit sorry for myself but I had started to do some walking and I could see the path ahead clearly. My vision problems were sorted almost as soon as the operation was finished, my optic nerves had been cleared of the pressure from the tumour and my peripheral vision was back.

However, the recovery from the adrenal crisis was a completely different affair. I lost a stone in weight and was at the lightest I’d been since school. I spent the first two weeks out of hospital sitting on the couch barely able to walk around, I cried quite a lot, it took a good 6 months to get over it to be honest. Adrenal crisis’ are life threatening, I know that now, I’ve had a taste of how quickly things can go wrong for patients who rely on Hydrocortisone.

The only other nasty episode in amongst all of this was ‘transient’ Diabetes Insipidus (DI). After my operation I had DI and it was immediately ‘cured’ by a quick injection. But it did come back after a couple of weeks, and I tried to manage it without success and I was eventually prescribed Desmopressin. My case confused the doctors slightly, the tests they looked at didn’t really show DI but my symptoms did. Luckily I gradually weaned myself of the tablets and after about 8 weeks my transient DI had gone away. I’m so glad it did, because frankly it was really horrible!

After all that excitement, things calmed down a bit. Many more tests ensued and in September 2013 I had a ‘short synacthen’ test to see if my body was capable of producing any Cortisol of its own. The day after the test I had a phone call from the Endocrine nurse to say I only scored around 70 out of the 500 it should have been. So I definitely needed to stay on the Hydrocortisone, quite probably for ever. When my first blood tests came in back in February 2013, I had various hormone imbalances including Thyroid being very low and some parts of my full blood count were way out. But by September everything had stabilised except the Cortisol and the Testosterone. So I started replacement for the Testosterone in October and it has been an increasingly good picture ever since then.

Looking at pictures of me now versus pictures of me prior to 2013, I do look a lot healthier. Dr Kar said when I first saw him I looked like “the typical pituitary patient” when he first sees them. I was thin in the face and very pale, whereas now I am much fuller in the face and often quite red cheeked. Prior to diagnosis people at work would say to me “are you ok, you look very pale”, and I said yes or course I was well. I should have listened to them!

I have been working hard on my fitness for the last couple of years, I walk a lot and I have been doing Pilates. All my muscle tone has returned now, as I said my vision is back to normal, about the only thing I have to contend with is the occasional Cortisol ‘low’. There are some days when that low Cortisol brain fog hits you unexpectedly, nothing a sit down, an early Hydrocortisone dose and a bite to eat doesn’t solve. It isn’t difficult to solve, but it is an inconvenience nonetheless.

I feel that all in all my journey has been not too bad. If it hadn’t been for the adrenal crisis event, things may well have been a lot more straightforward. Subsequent MRI scans have shown no further growth of tumour so that is a good thing. I feel quite lucky to have come through all this with good health and just the need to take a bit of medication, things turn out a lot more complicated for some pituitary patients.

Carl has written a blog regarding his experiences, it can be found here:

http://chpituitarytumourblog.blogspot.co.uk