New Member

New Member

Postby SamB » Tue Mar 21, 2017 9:52 pm


Not sure what I am supposed to say on here but here goes!

January 2014 I was diagnosed with a large tumour on my pituitary gland and within 2 weeks was having debulking surgery. Had the usual follow ups mri scans etc and then in March 2016 I was told the tumour had grown slightly and I would need further surgery. So, again July 2016 I was in theatre having another debulk. This time the surgery was more complicated and I lost a litre of blood in theatre and had a css leak. The surgery also left me with diabetes insipidous so yet more tablets! Over the last 3 years I have put over 3 stone on and my self confidence has taken quite a knock. Prior to all this I had ovarian cysts and had to have my ovaries and tubes removed so am on HRT.

I just feel so angry still that all this has happened to me and left me feeling ashamed of how I look. I am very fortunate that I have the most amazing supportive husband and daughter who love me unconditionally and some pretty awesome friends too, but yet I still feel I have been cheated. I know there are lots of other people who are in far worse a position than me, but ......

Does anyone else feel this way?
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Joined: Mon Feb 13, 2017 9:57 am

Re: New Member

Postby Carl » Wed Mar 22, 2017 8:54 am

Hi Sam

Certainly it is no fun having multiple conditions affecting your life, and it would be much easier if those conditions were gone. It is a common thing to feel like you do and it will take time to come to terms with it....but in the mean time feel free to let off steam here if it helps. It is brilliant that you have a supportive family because you need that first and foremost. The Pituitary Foundation has a great endocrine nurse helpline who may be able to talk you through some tips and tricks too.

I had a 3cm pituitary tumour removed in 2013 and I am lucky in that the tumour has stayed gone thus far and I only need replacement Hydrocortisone and Testosterone - I did have diabetes insipidus for a while, but that cleared up on its own thank goodness....I really hated DI whilst I had it.

The weight gain is something experienced by quite a few people, I don't think there is any one answer to it. It sounds like all the conditions hitting you at once have had a double/triple whammy effect.
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Joined: Tue Oct 29, 2013 11:27 am
Location: Near Southampton, UK

Re: New Member

Postby Pat » Thu Mar 23, 2017 9:04 am

Hi Sam
'Angry' and 'cheated' are quite normal to feel and say here re weight gain that isn't our fault.
One suggestion for you is when you next see your endocrinologist, ask about all your hormone blood results and any deficiency in your growth hormone, if that hasn't been addressed already? Are all your replacement levels OK, or is there room for manoeuvre for any dose tweaks - even small tweaks can make a difference. With DI, it is good to weigh yourself each morning for a week or so to see if you are retaining a bit more fluid and to discuss your desmo doses. A varying body weight on a day to day basis can help you monitor fluid balance - 1 litre of water weighs 1 kilogram.
Take a photo of you before 'pituitary'/ gaining this weight as this can be helpful for your endocrinologist to see who you were before.
Our new booklet Weight Issues is available on the website too with lots of good tips.

let us know how you get on.

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Joined: Tue Sep 07, 2010 2:25 pm

Re: New Member

Postby member_31784 » Mon Apr 03, 2017 7:29 pm

Hi Sam

It may not help but you're not alone.

Hilary Mantel(the author) also suffered endocrine problems and huge weight gain, she talks about! " ..... If you skew the endocrine system, you lose the pathways to self. When endocrine patterns change, it alters the way you think and feel. One shift in the pattern tends to trip another."

I think she's right, weight gain 64kg to 83kg for me made me feel like I was looking at a different person in the mirror, I still hate looking at photos of myself when large. Nine months after my first surgery I was diagnosed with growth hormone deficiency and lost about half a stone when starting replacements. I think my weight was the first issue I mentioned at every follow up visit! Gradually over 10 years things have improved but it's taken a lot of tweaking of drugs and trial and error.

Don't be afraid to tell your consultant how you feel.

Good luck.
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