Pituitary op done!

[Loo44]

Hi guys. Transphenoidal pituitary op done on 28/1. Phew I survived it! Had cerebral fluid leak during 6 hour op, thigh muscle used to plug leak. Had diabetes insipidous for few days following surgery. Still very bunged up nasally, no taste or smell, but just so grateful to be home. Had a nasty dip this weekend - felt nauseous, light headed, hot and clammy and generally yuck! Spent day at Kings yesterday and I've now been put on hydrocortisone as my cortisol levels dropped. Bit scary being on steroids, am being left to play about with my dosing myself. Took 10mg at 8 am yesterday, but by 12pm at hospital, had another "episode" and drs gave me another 10mg which had me feeling better within the hour. Have today taken 10mg at 8 am and am hoping I can last until 2 pm for my final dose of the day. Have insulin stress test booked for 11 March - not a pleasant experience, I'm told!

Just to let you know, I'm alive and kicking. Nobody warned me about my hormone levels and adrenals playing up, but things may calm down. Dr explained my pituitary gland has been knocked about and is being naughty! However, only time will tell if these problems are permanent. Anyone else on HC that can give advice? I'm on the tablets, not cream. The upside to op is that headaches have virtually gone, eyesight has a dramatic improvement and dizziness gone too. Thank you all for your wonderful support, Laura xx

[Confused77]

Goodness you really have been going through a difficult time but it's great that you now seem to be on the mend and beginning to see some good results. I hope you continue to improve. Look after yourself xxx

[Loo44 in reply to Confused77]

Thank you xx

[Hidden]

Hi Laura so pleased you home and the op is over with! Sounds as though you have had some complications I hope they get sorted out soon.You replied to , e when my endo suspected I had a pituitary tumour due to increase in size of my hands am feet.I an VERY pleased to say it wasnt the case.I have Graves disease and now on treatment. You sound very brave and positive about what must have been a scarey time, Do keep us informed of your progress and best wishes for a speedy recovery. ?..kim x

[Loo44 in reply to Hidden]

Thanks Kim and glad to hear you're being sorted too xx

[nightingale-56]

Hi Laura, (my daughter's name) My special needs son is on HC and has been since he was about 8. I am afraid I cannot tell you much about he feels as it is so hard to get him to tell us how he feels. He is now 37 and so is slowing down with age anyway and generally putting on weight, but he also has diabetes and is hypothyroid. He is on 15mgm at 8am and 5mgm at 4pm, so don't know whether this will help you. If he is ill he needs to double up on dose. He has Hypopituitarism with Septo-Optic Dysplasia so is probably different from your diagnosis. Wish you well. Janet.

[Loo44 in reply to nightingale-56]

Wow, what a lot to cope with, poor man. Thank you Janet - very helpful reply. Hugs, Laura xx

[Clutter]

Hi Laura,

Sounds like you've had a very rough time. No advice, I know nothing about HC. Just want to wish you well and a speedy recovery.

[Loo44 in reply to Clutter]

Thanks hon xx

[Hidden]

Hi Laura thought I would drop in and see how your recovery is hoing.Hope you are improving? Thinking of you....kim x

[Loo44 in reply to Hidden]

Hi Kim, bless you and thank you for asking. Still nauseous, GP just prescribed some drugs to calm that down. Kings seem to think I was subclinical Cushings disease, but biopsy of tumour says not. Anyhow, what that means is my body was producing too much cortisone and since the op, it's not producing any. My body is struggling to adjust with the synthetic hydrocortisone hence me feeling sick. I may need to up my dosage to around 60mgs a day, which is very high. At present, I'm on 30mgs daily. I know this will take some time to sort out, but I'm already fed up with feeling so yuck lol. How are you today? Hugs, Laura xx

[Hidden in reply to Loo44]

Hi Laura I am not too bad today thankyou my medscseem to be kicking in now.Sorry you still dtruggling your body has had such a massive shock so suppose will take some time to adjust. Hopefully you will begin to feel better sooner rather than later.You treat yourself gently sending hugs x

[Loo44]

Thanks Kim xx

[Loo44]

Omg - still pants! Bed bound, nooooooooo energy, hydrocortisone down to 5 and 2.5 mcg daily - cortisol levels are fine so I don't need HC. Just discovered I am growth hormone deficient. Maybe this is why I feel so awful. Am awaiting advice from hospital which I hope comes soon. Hugs xx

[flatfeet1 in reply to Loo44]

Hi Loo, I'm so sorry that you are suffering still, and that you have been through so much. I don't profess to know much about pituitary problems, but that I know its an gland that produces a lot of different hormones, so if your lacking in one you could also be be lacking in others.

I don't know if you have already been recommended these websites below, but I find them very informative and hope you will find them helpful too.

headinjuryhypo.org.uk/

pituitary.org.uk

I Hope you get the support and advice to make you feel better x

[Loo44 in reply to flatfeet1]

Thank you flatfeet. I'm a fully paid up member of The Pituitary Foundation and have found them to be extremely helpful, especially their endocrine nurse Alison who has been fantastic. I will look through the other site u posted too. A little energy today so I shall hopefully sit in the sunshine for a whole. How are you? Hugs xx

[flatfeet1 in reply to Loo44]

Glad to hear you have found a little energy, and you have found the PT website. I'm still in the process of trying to find out my problem, such a slow process. keep us posted on your progress and enjoy the sunshine while it lasts

xx