Welcome, Tom :). This is a wonderful group. But its definitely one you wouldn't want to choose to be in, if you didn't have to. My husband has Acromegaly. It definitely has it's highs and lows. And very confusing. Just keep researching. Go to the best hospital you can, if you need surgery. Keep a close eye on your levels. Igf1 very important to watch. Please let me know if I can help in any way. If you get a chance read my journal entries and that will give you an idea of our journey. ((Hugs))

hello from myself..I know the feeling when I was told..many emotions ....scared yes but one thing also determination I could KICK THE ASS of this ...have I...well Im outliving my endo..:) and with my sense of humour..I think Im looking in a better shape than him..yes I have some rough days but when I see how far Ive come Im proud of myself.. warmest hugs..

Hi Tom, I am from Reading too and was diagnosed in 2008, surgery in 2009. Welcome! All I can say is not to worry too much, as after the local confirmation of acromegaly (assuming RBH) you will be referred on to the excellent Endocrinology team at Oxford, led by Ashley Grossman, Prof Grossman is an internationally known expert in pituitary tumours.

First thing to say: don't worry about it taking so long while they go through multiple scans and tests, these tumours are not fast growing and it is more important to get all the testing done right so they know what they are up against.

Any questions, please ask, and happy to meet up face to face if you would like to.

John

Hi Tom
I'm new too... I'm 53 and gone through decades of not knowing what's wrong.. at last I've had an MRI and blood tests and been diagnosed with something.
In a way I envy you for finding out so young and I'm grateful and glad I've been diagnosed now.....
I don't know what's in store, I just hope some pins and needles might go... and yes that constant dull headache...
but maybe I'm at last talking to people that know and can help....
Look after those that help you and love your loved ones.
Take care and good luck.
Mark Cambridge

You are one lucky man. You should give your GP a hug and a HUGE pat on the back. Being scared is normal, we've all been there. The surgery itself is not nearly as scary as you are probably thinking. The fact that your GP caught this, hopefully early, is so fantastic. Welcome to the club that I wish didn't exist. ;-)

Welcome to the forum Tom! it definitely helps to talk to others with similar concerns. I have learned a lot from this group and thus helped me to understand this condition - and I am still learning. yes it is a beast of a condition but with good medical care you will cope well. The surgery was not too bad, for me the fatigue afterwards was difficult to deal with. Just a bit of advice from me, fight for yourself, if you are unsure about anything ask lots of questions.
hope you get stronger day by day!

Symptoms vary. I experience that "hand swelling" feeling. Facial features can take lots of time to develop. I don't have much of that, in fact. Skull thickness is one indicator; I have that. As John01 says, time isn't usually a problem, though it was for me, as I developed crossing of the eyes and they had to speed up my surgery to prevent further visual damage. Some of the crossing was reversed, and of course the brain and we ourselves learn to compensate.

Hi All,

Thank you for the warm welcome and kind words, they are very encouraging to read. Apologies for my delay in replying, I've struggled to log back in to my account but hopefully I'm good to go now.

It's a massive relief to know that I'm not alone in this. I still haven't had my follow-up appointment at the hospital yet so my head seems to be churning over thoughts at 100mph. I've calmed down a lot since my first post, I think I originally posted in shear panic as the doctor that told me the results of my blood tests casually broke it to me that I may have a brain tumour without fully expanding. The three hours that followed (until I was able to google acromegaly at work) wasn't very pleasant.

Again, thank you all for your replies - I shall spend my afternoon reading the posts on this forum and learning as much as I can.

JohnD1 - it's good to know somebody local that may well be using the team I might get referred to. It's a small world hey!!! I'm actually from Wokingham but, you are correct, I will be using the RBH initially. I may well take you up on your offer of a chat one day if that's OK? At the moment I don't know enough information for me to have any questions to ask but I'm sure that will change in a month or two.


Thanks,

Tom

Tom,

No problem, just send me a message on here if you'd like a chat or meet up face to face. I live on Wokingham Road, so not far away :-) I found my appointment at the RBH endocrinology department quite amusing in retrospect -- they all wanted to see me as I think a new acromegaly patient gets them a little excited! Once confirmed by blood test and by MRI, the RBH will refer you on to the folks at the Churchill hospital in Oxford, where they have dedicated pituitary endocrine staff. I now visit Oxford once a year, but until 2013 would go more regularly until they were sure everything was stable.

My pituitary adenectomy was my first ever operation in a hospital, and it really was quite straightforward. It was so good to feel better so quickly afterwards. It was also nice to have a few weeks off work :-)

John

I, too, was treated as a bit of a celebrity. My GP had never had an acromegalic patient before, though UVA had had one well-known giant as its patient, so my case was not as exciting for them.

Thanks John!

You are literally just down the road from me then. My appointment cannot come soon enough for me now, in an odd way I'm quite excited to learn a lot more about the condition and hopefully get an explanation as to why I feel the way I do.

Vincent - my GP too seemed quite excited when giving me my results. I was potentially his first ever patient with acromegaly.

Hi Chill welcome to the group I was diagnosed 2007 it never occur to me there was anything wrong to me When I was telling my GP I was secreting milk since my first child in 2003..my GP revered me straight away to Endocrine where saw my GHl were too high other symptoms I notice myself immediately after started my research about Acromegaly went back to my GP enlarge hands, feet people haven't seen me for ages not recognise me ,9eye lost sight use of glasses excess sweat mind I was telling my GP all if these so in somehow they were connected. I refused surgery took me 2 years to final undergo it..

Headaches still remember mood swings had lovely long black thick hair enjoy that one... My right shoulder in pain constantly .. Anyway surgery was straight forward no problems beside after went home I develop infection went back to ENT they were so good started Antibiotic straight away after 7 day I was clear.. Started Hydrocortisone 20mg a day... Sondastatin injection 2times a day self inject Wow !!! Weight Gain,,, depression , antidepressant ,, tiredness wow but you will be fine it's just people are not the same they don't respond the same,