im' molehands.........

[molehands]

Hello I'm Heather , 33 from North west uk. I suspect I've got acromegaly and like Vicky have been struggling to get answers. I'm now awaiting a 2nd opinion with Prof Trainer in Manchester. Found out today this should only take couple weeks to happen so pretty pleased its not a long wait. I have suspected this since last summer when was having particularly tough time with sweat attacks, high heart rate and palpitations. with worsening night sweats i suspected an endocrine problem. Fast forward few days and I joined the dots with my diabetes, breast discharge,weight gain, joint issues ( 10 years and some surgeries), snoring, etc etc the list goes on and on. Hardest thing has been getting medics to take me on to my way of thinking. Eventually I had an igf-1 taken however this came back lower than my hosp's ref range, subsequently attributed to stress, erm, I wasn't particularly stressed then. Anyway I persisted on and had an ogtt, this was a farce as nurses not familiar with the protocol( specialist nurse had left) and then lab processed incorrectly. By now it was Dec when I finally was able to have another done, this showed I suppressed my GH but i do not know the figures so to what level?. I was on the pill at the time of one and only igf-1 which i have subsequently read has been found in some cases to mask true igf-1 levels. I'm now stressed to hell following some a traumatic personal issues and that combined with my worsening signs and symptoms has led me to interrupt my nursing studies. This is really tough but my health has to come first. Apparently all my issues are because I'm overweight and arthritic. Thankfully my course leader was a neuroendocrine specialist nurse in a previous life and when I showed her photos over last 10 years, and explained what i saw changing she urged me to get a 2nd opinion so here I am awaiting that appointment. I'm sick to the back teeth of feeling so crap all the time and hating hat I see in the mirror. Finally had to take my 2nd engagement ring off today when hands were cold as it was getting to the point it would need cutting off. Hopefully soon though I will get the answer one way or another. I actually fear being diagnosed as a fat, sweaty, arthritic minger more than being told yes it's acromegaly By the way I love this forum for info, have lurked for a while but only today started posting, I also frequent DS.
Cheers for now, Molehands

[Paul Clarke]

Hi Molehands,

Can I just drop a quick note to welcome you to our community.

Regards,

Paul

[Vlal]

The comment about the 'minger' made me laugh I think the undiagnosed medical mysteries such as myself fear the: it's cos you're fat and minging diagnosis more than anything!

Anyway Heather/Moley... welcome. So glad to find you have made your way here and to hear the good news re: second opinion.

V-L
x

[alex fleming]

Hi Molehands/heather, welcome and I hope you find some answers from the forum that you are not getting from the medics.

Alex

[JohnwithanhD]

"fat, sweaty, arthritic minger"

Add "big nosed" to that and you have described a fair proportion of us in here!

A belated welcome. Yep, have seen you on DS.

John aka Ming the Merciless

[molehands]

Thanks for the welcome messages

[trys]

Hello again Heather,

I'm sure you're not a minger!

Prof T will get to the bottom of it, don't you worry. You hopefully will also meet the delightful specialist acromegaly research nurse (M). She "spotted" me the first time I went there in the waiting room. I was most impressed.

I'll be there tomorrow, as it happens too. One of my highlights of going there (apart from meeting the wonderful staff of course) is the Starbuck's coffee.

Take care,
Trys

[molehands]

Getting a call tomorrow with my app. Apparently next week the endos got society meets so poss week after. Just be glad when i see him and get some input either way x

[trys]

Getting a call tomorrow with my app. Apparently next week the endos got society meets so poss week after. Just be glad when i see him and get some input either way x

Did you get his call today? I was in there today, but they were working absolutely flat out. They were a couple of staff down I believe. Fantastic team work. Despite their workload they were all so very cheery as usual. You'll get a lot of answers there.

[molehands]

Yes got the impression they were very busy after few calls and no pick up. Appointment booked for 23rd, so pretty relieved its soon. Setting to work on collecting photos etc for him.
Cheers, Moley