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Does life get better?

PostPosted: Wed Feb 19, 2014 9:32 am
by Laura Hollyer
Transphenoidal op to remove 3cm pit tumour 3 weeks ago. I feel so awful. I have ME/CFS and stress exacerbates my condition. Did fine whilst in hospital and first few days at home, now I feel like death. Apparently, my tumour has been described as subclinical Cushings - I have skinny legs, big tummy, round face. Drs say I was producing too much cortisol, now I'm producing none and am on hydrocortisone tablets. Boy, they make me feel sick, so have cyclizine tabs to help. I'm currently on 20mg HC am and 10 mg pm. I feel soooooooo rough. I'm bed bound, no energy, light headed, dizzy, nauseous, eating little - needing to poo after anything I eat - feel very alone and if my life will never recover. Please someone, tell me it gets better. I'm 48 so nearing menopause, no doubt my hormones are all over the place. I'm scared about having to take hydrocortisone for life - I just feel so isolated and yuck. Anyone been through this? Xx

Re: Does life get better?

PostPosted: Wed Feb 19, 2014 11:07 am
by Pat
So sorry you're feeling so rotten; we have a telephone buddy, who will understand, and you can talk to her if you feel up to it. Sure this will help. If you can email me for her number.


Re: Does life get better?

PostPosted: Thu Feb 20, 2014 8:34 am
by Carl
Hi there.

I had transphenoidal surgery on the 28th May 2013, so still pretty strong memories of those times. I too had a 3cm tumour removed from my Pituitary gland, although in my case I had very low cortisol and nil testosterone so have Hypopituitarism. I take 20mg of Hydrocortisone daily and testosterone gel. The first 6 to 8 weeks were by far the roughest time for me too, although perhaps not as bad as you....My first stay in hospital was fairly uneventful and I went home thinking all would be straightforward, but I ended up getting secondary infections which put me back in hospital for another week. But things DID get better, I kept in close contact with my Endocrinologist who was brilliant and now I feel so much better than I did. All those symptoms, including dodgy eyesight, that I put down to just getting older (I'm in my early 50's) were in fact pituitary related, and I am getting a lot fitter and feel so much more positive mentally. Due to my low testosterone I had lost loads of muscle mass and couldn't keep my fitness up, I'm doing Pilates's blooming hard and I couldn't have done it before my operation.

The chances are if you speak to the Foundation 'buddy' and/or your specialist they will have seen and heard all your symptoms before and can help you adjust to what is a very traumatic time.

So, things certainly got better for me, and I hope they get better for you soon, regards Carl.

Re: Does life get better?

PostPosted: Thu Feb 20, 2014 8:46 pm
by Mgh
This is my second attempt to post a reply, I hope it works this time!
Sorry to hear how awful you are feeling. When the body chemistry is awry after surgery and you are suffering from a whole confusion of symptoms, it is very difficult to believe you will eventually feel a whole lot better. I started hydrocortisone when I became nauseous, weak and sick a week after surgery. Some time later thyroxine was added; nine months after that growth hormone, which made a tremendous difference. The Pituitary Foundation and Endocrine Nurse Alison were very helpful in supporting me as I negotiated my way through what was often a very frustrating route towards getting the various medications prescribed and balanced.
Be patient with yourself and try to remain determined to negotiate the hurdles so as to improve your situation. Don't be afraid to ask for help and support. It might be useful to keep a diary of the ups and downs so you have it to hand when discussing how you are with the medics. If possible find a reliable person to accompany you to medical appointments. Above all believe that you will feel much better than you are feeling now and there are likely to be ups and downs along the way.
I hope you will start feeling, at the very least, a gradual improvement soon.

Re: Does life get better?

PostPosted: Thu Feb 20, 2014 10:41 pm
by plum

i had my surgery at the end of 2010 and agree with the others that while the initial weeks/months are very weird, it does get better. eventually and very gradually.

not much to add to what has already been suggested.

i started counselling a couple of months after surgery. maybe discuss with your GP or local Macmillan Cancer Services if you think that might be useful for you. i've had to learn to live 'in the moment', and to take things day by day. it was not easy to do but it has helped.

yes, the yukkiness does pass....... although it might not go away completely.....but you'll gradually realise that you have developed your own ways to manage the more difficult parts.

I wish you all the best and LOTS of patience.


Re: Does life get better?

PostPosted: Fri Feb 21, 2014 4:39 pm
by Laura Hollyer
Thank you Carl, Mgh and Plum. I know I'm very impatient and I know this is going to take a while to get my levels sorted out, but I want to be better ASAP. Just hearing that your recoveries took a while is making me realise that only time will help. Thank you for your encouraging words. I managed to get out of bed this afternoon for a few hours, so that is progress. Am going with my hubby and youngest daughter to McDonalds later - what a thrill - but at least it gets me out of the house for an hour. Have a good weekend all of you, hugs, Laura xx

Re: Does life get better?

PostPosted: Sun Feb 23, 2014 9:50 am
by Carl
Hope you enjoyed the McD's Laura. Small steps at first, I was so impatient too, it's only natural to want to get back to normal quickly :)