Cushing's Disease - Irish Connection

arkham_69

Hey Guys,
I'm trying to locate other Cushies, I am a Cushie in recovery. I had a my pit surgery last year.

I would really like to connect with people here to give and receive some support

xx Thanks xx

:cool:

joanneee

Hey there,
I've been searching online for any Irish people who have suffered from the disease and eventually i found this post..
I would love to speak to you.

Thanks,
Joanne

maryhynes

Am new here so forgive me if I posting in the wrong place.
The story is I have suspected cushings disease as my cortisol levels are well elevated and severe weigh gain in a short space off time.

I am waiting on an appointment for the hospital but its running into 5 months now and no confirmation off date.Is there anything I can do to get this speeded up ? I have contacted the doctor on occasions but he seems as lost as me as to the delay.

Any advice greatly appreciated.

Thank you.

bluebell1

Hello, i was also diagnoised with cushings following surgery in June. Mine is from excessive use of steroids over a long period of time ( 18-24 months). Its a horrible condition and six months later i have not completely recovered, get tired very easily and still go to physio on and off to build up my muscle strength . There is very little you can do about the appointment unless you are in a position to go privately. I was fortunate enough to be an inpatient when i presented with symptoms. what are your symptoms?

5280

I too was diagnosed in early december- undertook a series of tests in the hospital in the weeks before Christmas. I hope to see the consultant later this month to ascertain the treatment. At the moment I cannot be of much help in relation to treatment, recovery rate etc, but hopefully will be once I get on that road. Luckily I have private cover and got to see the consultant quickly and he has been very proactive. It is not a pleasant disease, but am hopeful of revovery.

5280

I have recently been diagnosed with Cushings - any advice greatly recieved

arkham_69

5280 wrote: »

I have recently been diagnosed with Cushings - any advice greatly recieved

Hey, I'm 21/2 yrs post surgery, please feel free to pm and I will email you.

Dara

alide24

Hi can anyone tell me where they had their diagnosis for cushings made as I have been to 5 different doctors who won't do the tests, although I have most of the symptoms. I know that specific doctors cannot me named here, but if anyone can pm me I would really appreciate it.
Thanks a million

bluebell1

My surgeon in Vincents.

5280

My GP first said it to me when I went to him because I was feeling a bit tired. When he saw me he knew that my face was looking a bit "strange". He did some blood tests and when the results came back he referred me to Beaumont. I then had tests done which confirmed his initial reaction of suspected cushings. , followed by more to find the source. This hasn't been conclusive yet and I'm now waiting for another test to find the source. I had never heard of cushings before my GP said it to me, but when I cgoogled it I was fairly certain he was right, even without the tests as I had most if not all the symptoms. My GP was very perceptive, but Beaumont have also been very proactive. Maybe give them a go?

Michillinwoman

Hi All. Delighted to see this board . I just had an Mri pituitary today but will not have results for five days . I have done a dexmethasone test and 24 hr cortisol in urine and all came back neg or not over limits . I have all the sympthoms ,some of them for six years and have been sent for loads of other tests for PCOS,diabetes etc . I got tired of going to my GP who never likes to investigate why ? just give a prescription . I went to a private doctor and told her my reasons for suspecting cyclical cushings and even though I think she is skeptical she agreed to refer me for the mri . (lucky I have insurance) . I am tired of weight gain,(moon face and buffolo hump) pains in bones and joints,depression ,no libido , intermittant periods , cognative problems , fatigue etc . I feel like an old woman and I am only 48 yrs.

5280

I can sympathise with you, ( I am a 49yo female) that is now I felt this time last year, following a diagnosis of Cushings in Dec 2011. While the Cushings was discovered for certain then, the source of it took almost six months to be identified. I had 3/4 MRI's and eventually had pernosal sinus sampling in March which confirmed that the problem was a pituatary tumour. In June 2012 I had surgery to remove the tumour. This was unsucessful and was repeated in September, this time with much more positive results. Four months post surgery, I am feeling much better, have lost some weight and also the moon face is gone. However, I still suffer from muscle pain which apparently is due to steroid withdrawal and I take 15 mg of hydrocortisone daily. I have been assured that this will pass.

All in all it has been a long year, but I am very glad to be where I am now and have tried to stay positive throughout. Please PM me if you need further information.

Best of luck

LegacyUser

Hi... just wondering were you ever diagnosed after your post...I am in this situation at the moment....dont know what to do! Thanks

Michillinwoman wrote: »

Hi All. Delighted to see this board . I just had an Mri pituitary today but will not have results for five days . I have done a dexmethasone test and 24 hr cortisol in urine and all came back neg or not over limits . I have all the sympthoms ,some of them for six years and have been sent for loads of other tests for PCOS,diabetes etc . I got tired of going to my GP who never likes to investigate why ? just give a prescription . I went to a private doctor and told her my reasons for suspecting cyclical cushings and even though I think she is skeptical she agreed to refer me for the mri . (lucky I have insurance) . I am tired of weight gain,(moon face and buffolo hump) pains in bones and joints,depression ,no libido , intermittant periods , cognative problems , fatigue etc . I feel like an old woman and I am only 48 yrs.

shaunam5849

hi, i am curious as to what endo's people in Ireland have been too? just researching who people would reccommend as i have just been diagnosed with cushings. thanks.

LegacyUser

I just went to prof thompson in beaumount,, I have de xx suppression test tonight ge highly suspects cushings

Quality

My sister goes to professor Thompson in beaumont. Very nice man. She has/had acromegaly surgeon javadepor spelling probably wrong removed tumor. Excellent treatment and care from all staff, although thompsons secretary can be a bit rude. But he is worth having to put up with her.

shaunam5849

i had dex test but got negative results, but i have heard from others in several other countries that dex was negative but they have cushings and their endo did salivary cortisol which is meant to be more accurate, but they dont seem to use that here.

NinjaN

Hi everyone,

I am also looking for a recommendation for an endocrinologist relating to a cushings diagnosis. Does a GP do the tests or do you need the endocrinologist to do it?

Was thinking of Dr. M. Griffin in Clane hospital?

Would love to hear any feedback, advice and recommendations!

Thank you

shaunam5849

your GP can do the tests and then refer you on to an endocrinologist or you can just go straight to an endocrinologist.
I would advise you to do your research yourself first and ask plenty questions when you do see an endocrinologist !

NinjaN

Thanks for replying! I have had blood tests done by my GP which show high cortisol, low calcium. Have been referred on to endocrinologist and have my apt in mid October. Hopefully will be investigated further!

LegacyUser

Anyone still active or know where I can go to speak to people woth this? I was recently diagnosed and waiting on surgery in Beaumont

arkham_69

Hey,
If you go on to facebook and look for the pituatary foundation, they have an irish page, there are a few cushing's groups in the uk too. I had surgery 9 years ago, had mine done in Cork, as I'm based in limerick, originally from north cork.

Best of luck,
Dara Mahon

EimearCassidy

Hi, Just awaiting formal diagnosis of cushing disease. Seems v.rare. very little irish info

EimearCassidy

Can you send me on any Iinks to irish info and supports.

Thanks