Hi! 22 years with Pan Hypopituitarism

Hi! 22 years with Pan Hypopituitarism

Postby Jesteroony » Mon Dec 10, 2018 3:30 pm

Hi all
I'm Justin, male, 47 years old
I had a Macroprolactinoma, it was discovered at 25 after going to see the GP to enquire as to why I only looked about 12 years old!!
It was diagnosed and the plan was to shrink with cabergoline but eventually it was removed after it haemorrhaged on a couple of occasions which gave me 11 weeks of double vision.
They removed the pit gland and I have had Panhypopituitarism ever since.
30mg Hydro, 100mcg Thy, GH, Testogel daily.
Would love to chat to people of similar age and circumstance to compare notes.

I would like to say that my story has been positive even though there has been many difficulties along the way.
I work full time, go to the gym, socialise regularly and on the whole live a very normal life - Even like a drink socially!

I have noticed that my endocrine care locally has declined since my consultant endo retired a few years ago, I now have to be totally on the ball and request anything I feel prudent with my GP.
That is one of the reasons I'd like to talk to others as I haven't been using the forums or website up until now and I am not aware of any changes in treatment etc and want to get up to speed with how things have changed as well as share thoughts and feelings and maybe also give advice to others.

Hope to hear from you all soon :-)
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Joined: Fri Aug 03, 2018 12:22 pm

Re: Hi! 22 years with Pan Hypopituitarism

Postby member_41389 » Tue Dec 11, 2018 8:41 pm

Hi Justin
Welcome to the forum. Feel free to ask questions, nothing is silly when your health is concerned.
I'm 68 with active acromegaly, surgery radiotherapy and monthly injections with not great effect so far but fingers crossed. I am pan-hypo except for GH so HC, Thyroxine and testogel. At the moment my main problems are probably acromegaly driven, cardiac effects plus fatigue.
Take care of yourself
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Joined: Mon Sep 08, 2014 8:37 am

Re: Hi! 22 years with Pan Hypopituitarism

Postby member_31784 » Wed Dec 12, 2018 1:36 pm

Hi Justin
I’ve been using the forum for 14 years since my first operation for non functioning tumor. Have always found it helpful and supportive.
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Joined: Tue Sep 07, 2010 10:24 am

Re: Hi! 22 years with Pan Hypopituitarism

Postby Jesteroony » Thu Dec 13, 2018 10:51 am

Thanks for your replies guys.
I have my yearly appointment with my endo this afternoon.
Unfortunately he's not great after having a fantastic endo for many years, he has now retired and his replacement is just is not very helpful.
Posts: 9
Joined: Fri Aug 03, 2018 12:22 pm

Re: Hi! 22 years with Pan Hypopituitarism

Postby KitKat » Sun Dec 16, 2018 12:51 pm

Hi Justin,

That's a shame. Is there anyone else in the clinic you could ask to see instead? Sometimes it's just a personality thing.

I had one shatteringly bad encounter with a grumpy older specialist (the senior honcho, who interrupted me within literally about 10 seconds to tell me I was probably mistaken) at my first allergy clinic appointment and nearly never went back. Happily, next time I got to see his sidekick, a younger woman, and we got on like a house on fire. It was one of the most helpful clinic appointments I ever had.

So maybe ask the clinic secretary/receptionist if you could try another consultant on a speed dating rotation next time?

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Joined: Tue Aug 21, 2018 3:14 pm

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