Acromegaly and its complications

Hi i was diagnosed with acromegaly in 2005 and i was diagnosed by a surgeon doing my carpal tunnel surgery another complication of acromegaly,,ive had a tranphenoidal vasectomy surgery and 5 weeks of radiotherapy and although it has reduced the size of my tumour they were both still classed as unsuccessful.Im 36 now and have arthritis and its now beginning to become more unbearable. Im waiting to hear about possible gamma radiotherapy but it was deemed to risky 5 years ago so finger crossed its a possibilty soon. For the last 6 years ive been on the medication lanreotide injecting monthly and i self inject pegvisomant 20mg daily. Ive come to terms with having this disease now apart from comments about my appearance when im with my daughter as they upset her but cant see any hope of any reconstuctive surgery anytime soon,,anyone else struggling to cope with this aspect of having acromegaly?

tammy79 where are you treated. I am on the same injections at the Christie under Prof Trainer. I find my mood changing about 3 weeks into the lanreotide injection and then it picks up again after the jab

tamy your story is the same as mine except for the time scale. I was diagnosed 2000. Due to arthritis I have had both hips replaced and my left knee. can't do anything about my spine or fingers though. I am Area coordinater for a Pituitary Foundation support group in Liverpool    www.pituitary.org.uk. you can get loads of info there

Hi steve i live in cornwall so had my operation in derriford but im under a consultant from the royal cornwall hospital dr browne and nor dr dugal,,i find the same with the lanreotide ,,im now starting to have real problems with joints in my legs but they wont do anything just tell me to exercise and lose weight,,but its so hard to exercise when your in constant pain and ive tried every diet under the sun but cant shift any weight. Up until the last year my main problem was the headaches. a lot of my symptoms started around 2000 but they were always put down to other things. Thankyou for the website address i will have a look at it now. Nice to actually hear from someone who has the same condition and understands ive never met a fellow acromegaly patient

There is a support group down your way , Mike Luxton is the group's area co-ordinator mike.pituitarylsg@gmail.com or phone 01872 501375. I am not sure how far away from you they are but I have found the support from these groups invaluable. There are 6 accro patients in my support group so I get a lot of feedback on the complications of the condition. Do you take Hydrocortisone? if you do then you will find it difficult to lose weight and your doctor should know this. unfortunately the NHS has been put in the position of having to be very selective on joint replacement but I would say keep banging away at your GP.My personal email is stshains@Hotmail.com and my phone number 01706849148 if you feel the need to chat. when you go on the website I would recommend you pay particular attention to the hydrocortisone booklet . you may be surprised at what you need to be aware of . I have attached our latest newsletter to give you an idea of the support group

oops its last years newsletter , but it is a good read

Hi i was lucky diagnosed in 2008 and surgery a year later which was successful.however i still get joint pain and headaches.

Thankyou Steve,,no im not on hydrocortisone its the one  thing it hasnt affected thankfully. Also for your email and phone number i might take you up on that chat at some point. And likewise for you my email is tammy.1979@outlook.com and my number is 07880435169. For the first time in ages ive felt comfortable talking about having acromegaly i tend to shy away from any sort of interaction