Cushing's Disease/Syndrome

BanzaiBk

Hi all,

It seems almost foolish to post in this forum when so many of you are going threw much bigger ordeals than my own but I would appreciate some feedback:) .

I have recently been diagnosed with Cushing's Disease, which is a hormonal disorder that's usually (in my case) caused by over exposure to the hormone cortisol, after 5 years of misdiagnosis. While I only have very few of the tell-tale symptoms, the disease has pretty much been the bain of my teenage life.

After an MRI scan yesterday it was confirmed that I have quite a prominent pituitary adenoma which my consultant wishes to remove as soon as possible. Firstly however, I must undergo surgical investigation as to whether or not the adenoma can be successfully removed surgically. If not, than radiation therapy seems to be awaiting me.

The succesful treatment of the adenoma is hampered however due to my current health. In August I fell victim to a severe bout of bacterial meningitis,and tbh 5 months on I am not still even 70% recovered both physically and mentally.

I was just wondering if any other members had any experiences with Cushing's Disease/Syndrome and the treatment of this.

TIA


MOD EDIT : the OP has asked me to edit this post to avoid confusion among readers. Basically, the op has posted about his cushing's problems up until post 34.
after post 34, the health issues mentioned by the OP are UNRELATED to cushings.
i hope this clarifies things so that people dont get freaked out when reading further

CathyMoran

First of all, welcome to the forum, I hope that it may be of some help to you. I do have a cousin that has the same condition, it also took him many years to be diagnosed but he is doing great now. Good luck with your treatment.

DrIndy

Endocrine diseases can be very subtle and difficult to diagnose and difficult to live with too. There are therapies out there and even though you had meningitis, you are still young and are fit for all treatments (unless your consultant has said different)

Pituatory surgery is tricky business, it is in the centre of your head and near very sensitive structures - which does not stop surgery taking place - just with great care and skill. However, if it is inaccessible, then radiation therapy could be an option. Very targetted doses can be delivered to the pituatory by angling the radiation around your whole head which minimises injury to the rest of your head/brain. Either way unfortunately, you may end up on other tablets/injections as the other activating hormones will be depleted with the treatment (such as thyroid, cortisol (desirable), growth hormone, FSH/LH (sex organ activating hormones). They are replacable though.

BanzaiBk

Thanks for the welcome Cathy:)

Thanks for the run down DrIndy, I met with my endocrinologist this morning who feels that I might be an unsuitable candidate for the surgical removal of the adenoma due to the actual size of it. Hopefully the investigative surgery next week will be positive because tbh I'm terrified of the thought of radiation therapy.

I should also mention that the endocrinologist believes that my asthma treatment as a child is the sole reason for the condition, which he says accounts for the lack of other major symptoms.

Star Lord

Oh my god, just found this part of boards (didn't know it existed before today!) and just spotted your thread!

At 19 I was diagnosed as having Cushings Disease, in my case, also caused by a benign pituitary tumor. I know they prefer using that other word, the aden... something word as the word tumor confuses and scares some people but I can never remember it lol! I was told I'd the most rapidly progressing case of the condition that they had come across. I had most of the telltale symptoms, other that the fact that it was strange for a young man to have the condition.

Following 3.5 weeks in the Mater hospital (I was kept in immediately following my first out patients appointment with the endocrinologist), they applied to have my surgery done in London, in the National Hospital for Neurology and Neurosurgery in Queens Square. I went over there and had the surgery in the morning of November 25th 99.

Since then, I've been on Hydrocortisone tablets every day, and have no major problems. I still have the striae all around my body, and under my arms, as they were very deep at the time of the illness, but they're very faint now.

Following the surgery, I lost a lot of the weight that I had put on due to the illness (and have since put some back on due to inactivity, but thats a different story!)

You said that the investigative surgery was the week after you posted the message above, how did this go? How are you getting on since?

If you wanna talk about it at any time please feel free to contact me, I'd only be too happy to help any way i could.

BanzaiBk

Thanks for the reply Damo

The investigative surg. confirmed that there was an adenoma on the pit. alright. Like yourself, the endocrinologist elected that I have it removed as soon as possible because it was making me really ill.

So just a few weeks after the intial diagnosis I underwent surgery in the beginning of February under Dr. Marks in the CUH. The 1st round of surgery went well enough and the adenoma was removed without issue, however they found some benign lumps scattered around the area of my oesophagus etc. Unfortunately I had to undergo two further surgeries to remedy the problem.

When I was finally released from hospital my hormones were all over the place:o Emotionally I was all over the place, my mood would fluctuate between tolerable and furious. I lashed out and everyone and anyone at any chance I really had. I also started to develope multiple striae all over my body but particularly across my stomach and under my arms. My weight prior to surgery fluctuated between 11st and at it's heaviest 13st. Now after sugery I weight what I consider an unhealthy 9st 2 pounds. Needless to say I feel very selfconcious about myself at the moment.

I struggled with keeping up with my college work and developed a terrible relationship with the department in UCC. For some reason I began to fear talking with them about my lack of motivation/interest/attention and pretty much left my academic life to rot. I was constantly exhausted which caused my short attention span and became prone to severe bouts of migraines.

Now nearly 2 months after having the adenoma removed the hydrocortisol therapy has helped to even out my moods somewhat and instill more energy within myself. I feel I have developed a better will to succeed with passing my summer exams but I still am too afraid to talk to my department about my situation.

Hopefully things will start to even out more soon enough.

tbh

BanzaiBk wrote:

Hi all,

It seems almost foolish to post in this forum when so many of you are going threw much bigger ordeals than my own but I would appreciate some feedback:) .

just to say to you Banzai, and anyone else reading who may feel this way - whatever you are going through, it's a big deal to you, and if talking about it helps, then fire away. I remember when I was dx'd with diabetes, my mam said "you know it could be worse" and all the while i was thinking "yeah, but it could be nothing at all" - feeling sorry for myself at the time. Anyway, there's no hierarchy of diseases in this forum, you're among friends now

BanzaiBk

Thanks for that tbh:)

Star Lord

BanzaiBk wrote:

The investigative surg. confirmed that there was an adenoma on the pit. alright. Like yourself, the endocrinologist elected that I have it removed as soon as possible because it was making me really ill.

Just out of curiosity, which endocrinologist was it? I was under Prof. Powell in the Mater.

BanzaiBk wrote:

So just a few weeks after the intial diagnosis I underwent surgery in the beginning of February under Dr. Marks in the CUH. The 1st round of surgery went well enough and the adenoma was removed without issue, however they found some benign lumps scattered around the area of my oesophagus etc. Unfortunately I had to undergo two further surgeries to remedy the problem.

Glad to hear the adenoma was removed successfully!

BanzaiBk wrote:

When I was finally released from hospital my hormones were all over the place:o Emotionally I was all over the place, my mood would fluctuate between tolerable and furious ... I also started to develop multiple striae all over my body but particularly across my stomach and under my arms. My weight prior to surgery fluctuated between 11st and at it's heaviest 13st. Now after sugery I weight what I consider an unhealthy 9st 2 pounds. Needless to say I feel very selfconcious about myself at the moment.

I struggled with keeping up with my college work ... which caused my short attention span...

...but I still am too afraid to talk to my department about my situation.

Hopefully things will start to even out more soon enough.

I know exactly what you mean about the hormones being all over the place and the moods likewise, I was there, and that was really hard to deal with.
I actually developed really heavy striae all around my stomach and sides and under my arms (Where they were worst) while I was sick, from incredibly rapid weight gain coupled with the skin thinning associated with the cushings. Went from 10.5st to 16.5stone... back down to 11.5st, and from not doing enough, gradually crept back up to 13st. Am now trying to get myself more active, because I would also be very self conscious.

Shortly after my surgery I went into my final year at Uni, and found the exact same as you've said, the attention span and the memory capacity was severely diminished! I found it incredibly hard to take information in and keep it in. Needless to say, I had to resit some of my finals, under appeal because I finally had to go to them and say about my problems. Their response was that I should have told them before, so I suggest you do, although yeah it is very hard, especially as most people have never even heard of the condition, and you kinda have to go into depth with it to let them know how much of an impact it has had on your life. I had even considered dropping out, but thankfully a few good friends encouraged me and helped me through.

These few months after the surgery are the hardest, it was quite a while later that I started feeling back to my old self again, although I still find it difficult not to think of myself as I was when I was sick, and have self confidence issues arising from that, but life is a lot better.

As I said, feel free to message me with anything, it's such an unusual condition that there isn't much recognition of it out there, and I knew of no-one with it that I could talk to. Would have loved to have had someone to talk to that had been through what I'd been through.

mike65

You learn all sorts on this forum.

Mike.

BanzaiBk

DamoElDiablo wrote:

Just out of curiosity, which endocrinologist was it? I was under Prof. Powell in the Mater.

Prof. O'Halloran in the CUH, he is confident that my cushings is the result of over-ongestion of asthma related medication (steriods) as a child.

I know exactly what you mean about the hormones being all over the place and the moods likewise, I was there, and that was really hard to deal with.

The moods is prob. the worst aspect of the whole thing and it's hard for people to understand that I'm not just causing a fuss over everything.

I actually developed really heavy striae all around my stomach and sides and under my arms (Where they were worst) while I was sick, from incredibly rapid weight gain coupled with the skin thinning associated with the cushings. Went from 10.5st to 16.5stone... back down to 11.5st, and from not doing enough, gradually crept back up to 13st. Am now trying to get myself more active, because I would also be very self conscious.

The thinning of my skin was something I forgot to mention but is also another annoying aspect of this entire illness. To say I bruise like a peach is the understatement of the centuary. Also, is it normal for the striae to change colour? Like, some days it is violently red, almost purplish, but then other days it can be really faint and only noticeable because of the outline.

Shortly after my surgery I went into my final year at Uni, and found the exact same as you've said, the attention span and the memory capacity was severely diminished! I found it incredibly hard to take information in and keep it in. Needless to say, I had to resit some of my finals, under appeal because I finally had to go to them and say about my problems.

I totally understand. I went from being a highly academic, 580 point student to someone who effectively couldn't care less about my college work. While I tried so hard to study and take in information, in the end I absorbed so little I simply gave up. Did you find it easier to study and effectively learn things after a few months, and did you do anything in particular to improve your motivation?

...especially as most people have never even heard of the condition, and you kinda have to go into depth with it to let them know how much of an impact it has had on your life.

Again, another major problem. When you inform lecturers about the illness they look disbelieved. I have twice been accused of making the name up by two "highly respected" UCC "academics".

These few months after the surgery are the hardest, it was quite a while later that I started feeling back to my old self again, although I still find it difficult not to think of myself as I was when I was sick, and have self confidence issues arising from that, but life is a lot better.

This is something I'm trying to change, moving my mindset from an "Ill" person to a "healthy" person. I am what I consider to be a really optimistic person, I'm all about having a good time and enjoying myself as much as possible but in the past few months I am literally a shadow of my former self. Every day I wake up now I will myself on to be bright and happy and when I feel suffocated by the situation I find myself saying "You know you can do this".

As I said, feel free to message me with anything, it's such an unusual condition that there isn't much recognition of it out there, and I knew of no-one with it that I could talk to. Would have loved to have had someone to talk to that had been through what I'd been through.

I really can't stress enough at my relief when I realised someone else actually had this condition. Since it had been months without any reply I had resigned myself to the fact that I was indeed some kind of freak. Thanks:)

Star Lord

BanzaiBk wrote:

Prof. O'Halloran in the CUH, he is confident that my cushings is the result of over-ongestion of asthma related medication (steriods) as a child.

Mine seemed to be simply a growth that sat there probably from birth, but only kicked in and started to effect me once puberty had sent the hormones goin in the first place.

The moods is prob. the worst aspect of the whole thing and it's hard for people to understand that I'm not just causing a fuss over everything.

Yeah totally, and I found it worst with those closest to me, they simply thought "You're cured now, what have you got to be getting annoyed at?"
In one way, they were right, but there wasn't much I could do about it. Best thing is to simply try to do something every day that makes you happy. And surround yourself with your friends, and just try to appreciate what you have.

The thinning of my skin was something I forgot to mention but is also another annoying aspect of this entire illness. To say I bruise like a peach is the understatement of the centuary. Also, is it normal for the striae to change colour? Like, some days it is violently red, almost purplish, but then other days it can be really faint and only noticeable because of the outline.

It took a long time for mine to settle into that faint colour since they were so deep. But yeah, some days they seemed really vivid, other days they'd be paler. The ones that were deepest, under my arms, you could actually see my blood vessels pumping through :eek:

I totally understand. I went from being a highly academic, 580 point student to someone who effectively couldn't care less about my college work. While I tried so hard to study and take in information, in the end I absorbed so little I simply gave up. Did you find it easier to study and effectively learn things after a few months, and did you do anything in particular to improve your motivation?

Nothing in particular except thinking to myself that all I can do is try. If it works out well, fantastic, if not, so be it, there are always other options. That plus whenever I felt myself starting to get stressed by it, stepping back and spending some time relaxing and doing something that'd help me unwind.

Again, another major problem. When you inform lecturers about the illness they look disbelieved. I have twice been accused of making the name up by two "highly respected" UCC "academics".

That's both incredibly pompous and insulting. I know at the time I felt almost ashamed when the attitude of disbelief was aimed at me, and it was very hard to stand up for myself even though I was completely in the right. But now if someone tried to adopt that kind of attitude with me I would tell them that I am amazed that they are as high as they are, when they fail to get their facts straight before trying to argue against something, and that I would suggest that before they call someone a liar in future that they get down from their high horse and check up about what they are being told. Just because they do not have past experience of it does not mean it doesn't exist.

This is something I'm trying to change, moving my mindset from an "Ill" person to a "healthy" person. I am what I consider to be a really optimistic person, I'm all about having a good time and enjoying myself as much as possible but in the past few months I am literally a shadow of my former self. Every day I wake up now I will myself on to be bright and happy and when I feel suffocated by the situation I find myself saying "You know you can do this".

As I said earlier, all I can suggest is to spend lots of time with friends, and take time to do the things that you like.

I really can't stress enough at my relief when I realised someone else actually had this condition. Since it had been months without any reply I had resigned myself to the fact that I was indeed some kind of freak. Thanks:)

You're more than welcome. It's over 7 years since my surgery now, and I have met one person since then that had the condition, although hers was from an andrenal adenoma. It's great for me too to find someone who has had the same problem as I have had, and to be able to relate to them
Any questions you have, any time, feel free to gimmie a shout, or even if ya just wanna wee rant about things to get it off your chest, feel free!

gerjude

Hi all,
I just foand this forum today.
have any of you had difficulty withj being diagnosed with cushings here in Ireland?
I see prof. powell in the Mater was mentioned... Is he the person to see??
I would really appreciate any info anyone has about dealing with this condition in Ireland.
I've only been able to find info for America and the UK.
Thanks,

Ger

Star Lord

I'd say to get an appointment to see any endocrinologist...

BanzaiBk

gerjude wrote:

Hi all,
I just foand this forum today.
have any of you had difficulty withj being diagnosed with cushings here in Ireland?
I see prof. powell in the Mater was mentioned... Is he the person to see??
I would really appreciate any info anyone has about dealing with this condition in Ireland.
I've only been able to find info for America and the UK.
Thanks,

Ger

Hey Ger,

as Damo said you'll need to get an appointment to see a endocrinologist. My own endocrinologist is Dr. D.J O'Halloran in CUH.
Afaik there is two ways to go about seeing one. Publicly, you'll need to be referred to one by your local GP. This is the route I took. I am sure you can go about it privately too but I can't help you in that respect.

As for actual diagnosis, in my experience this was a very long and drawn out process. It took a few years for my own Cushings to be diagnosed.


As for updates on myself, I'm getting much better. I've elected to take a year out of college and concentrate on getting as well as I possibly can. It's been a tough year mentally and physically for me. Thanks again for all your advice Damo:)

Star Lord

Yeah the refferal from a GP is the way to go, its a very complicated disease, and as ya can see from both BanzaiBk and my stories show, its difficult to diagnose, and youll need a whole series of tests to confirm if it is Cushings Disease.

BanzaiBk glad to hear things are going well, and its my pleasure! And any time, if you wanna chat about anythin in relation to it, I'm here to lend an ear!

DrIndy

quite a few endocrinology syndromes are very subtle indeed and this is why they can easily be missed for a few years.

A funny story from one of my lecturers in college - an endocrinologist.

This chap came into the clinic - looked normal, but had highish blood sugars and blood pressure. He had a letter from a relative in america sticking out of his pocket with no-one else but Dr. Cushing on the stamp - this was what gave the consultant the sudden inspiration to check him immediately for this and it turned out right.

BanzaiBk

DrIndy wrote:

quite a few endocrinology syndromes are very subtle indeed and this is why they can easily be missed for a few years.

A funny story from one of my lecturers in college - an endocrinologist.

This chap came into the clinic - looked normal, but had highish blood sugars and blood pressure. He had a letter from a relative in america sticking out of his pocket with no-one else but Dr. Cushing on the stamp - this was what gave the consultant the sudden inspiration to check him immediately for this and it turned out right.

Lol.

Yeah it seems they can be difficult to detect alright. In my own case I also had hypothyroidism and PCOS which muddles the picture even more. I'm glad though that the team were slow to diagnose the Cushing's in a sense because it assured me they were doing all the tests properly and thoroughly.

Had a nice chat with Dr. O'Halloran's SHO on Thursday last who is assured me everything is going well. I must say I am quite pleased with the level of treatment I have received from the endocrinology dept. of the CUH, it certainly eased the situation:)

Star Lord

I keep meaning to go back for check-ups... but forgetting -_-
All is going well with me though, so I'm not too worried, must get one sometime soon though just to be sure!

BanzaiBk

Woo check ups Back in Cork for work at the mo and I just remembered I've a meeting with the endo on Thursday >.< Things are going ok at the moment except I think I might need an Eltroxin boost, well the GP thinks so anyways.

Star Lord

Glad to hear they're going well!

But what's Eltroxin? *confoozed*

BanzaiBk

DamoElDiablo wrote:

Glad to hear they're going well!

But what's Eltroxin? *confoozed*

TSH replacement I think. I'm on 250 mg per day atm, gives meh enegery:p

BanzaiBk

Excuse the doublepost but major rant to being :mad:

I have been feeling really drowsy these past 3 weeks. I mean drowsy in the sense that I often find myself struggling to keep my eyes open and yawning uncontrolably even after a solid night's sleep (9 hours). I went to see the endocrinologist yesterday in Dublin and he has now decided to bring me in on the 3rd of December for a 2 week diagnosis basis regarding this drowsiness and other more embarassing problems. While I welcome his enthusiasm in trying to figure out what exactly is going on with my hormones, I can't help but feel like I'm being lumped back into hospital again because they can't seem to figure out what is wrong:(

About 4 weeks ago they were investigating the possibility of me having Type 2 diabetes, or pre-diabetes. They ran all the necessary tests and concluded that there was no real evidence to substantiate the diabetes claim so now they are stuck between a rock and a hard place. I understand that any issue with your hormones etc is an extremely difficult area to diagnose etc but I ca n't help but feel like this has been dragging on for far too long without any major progress barring the removal on my for adenoma.

/rant

Star Lord

That's really awful huni.

I hope they are able to get some kind of diagnosis and are able to do something for you in a reasonable amount of time. At least you know they are serious about helping you get to the bottom of it when they are taking you in. I think that is really the only thing that can be done in the case of hormonal problems is to observe for a number of days and to check the levels at different times during the day!

Sending hugs n good wishes your way though.

BanzaiBk

Cheers Damo. Hopefully the outcome of this stay will be worthwhile though, considering my next two consultant appts have been cancelled to January over this bloody outpatients shut down thing. Typical:rolleyes:

Star Lord

No problem at all! Ya know if ya need a chat/rant, feel free to PM me

BanzaiBk

Middle of the night posting...

My body clock is all over the place. I'm finding it extremely difficult to settle into a healthy sleep pattern. This week I've slept;

Monday: 10pm - 7am
Tuesday: 11.30pm - 7am
Wednesday: 10pm - 7am
Thursday: 10pm - 2pm!!
Friday: 11.30pm - 9am
Saturday 1am - 3pm!!

It's now 2.45am Monday morning and I am semi-tired. Have to be up early to get to Dublin. I'm really putting my finger on my Eltroxin tablets and my hypothyroidism as the reason for my god awful sleep patterns. My mood has suffered immensely.

BanzaiBk

BanzaiBk wrote: »

Cheers Damo. Hopefully the outcome of this stay will be worthwhile though, considering my next two consultant appts have been cancelled to January over this bloody outpatients shut down thing. Typical:rolleyes:

Got notification in the post that due to health issues my Consultant won't be able to see me again in the outpatients dept. until Thursday February 14th. :(Since my last post I've had 4 outpatient appts. with my neurologist (Dr. Marks, CUH) who is worried about certain hormone levels in my latest round of blood treatments and is shocked that I will go nearly 4 months without an endocrine review. I am a little worried aswell (see previous posts regarding bad sleeping patterns and tablet concerns).

I had a scheduled appt. with my GP on Tuesday passed for bloods and she was surprised that as a high priority patient I'll go so long without an appt. Being honest I have had a great few months (Cushings-wise) and really feel like I'm making massive improvements and really would prefer to see my consultant asap so I could get off his books and make room for someone who is in greater need of treatment.

As it stands I'll be attended neurology out patients indefinitly. :rolleyes:

BanzaiBk

Well it's been a while since my last post which so I decided to update/close the issue. It's nearly a year since I started the original topic and I can't even begin to explain how ill, confused and terrified I was when I typed it. It hasn't been easy, in fact it has been the toughest year of my life. As with any hormone/gland related illness, the treatment and control of Cushings is drawn out and time consuming. If anything that drawn out process really got me down, I was very low for a large part of 2007 which is unfortunate but is a learning curve all the same. I learned my limits, I learned to understand that I can't be the wonderwoman I think I need to be but in reality I don't have to be.

Finally after all these months I think I can say I'm on the right path oncemore with my life. I had my last official appointment with my endocrinologist yesterday and will be off his books until my yearly check up in January 2009. I'd like to think this thread will be of use to someone searching boards, in the past year I've received PMs for two individuals who told me of finding this thread through a google search for Cushings in Ireland. I tried my best to help both of them, even meeting one of the girls at an endo appointment in the CUH!

On that note I'd like to thank everyone who posted in this thread, especially Damo who helped me out loads even though I was a total n00b:o It was a relief to know for sure that other people had experienced this bizarre syndrome/disease in Ireland. Anyone should feel free to PM me about Cushings/endocrine problems if they just want a chat, I'll try my best to lend an e-ear.

Bec

gurramok

Keep your spirits up BanzaBk.
I know someone close to me with the condition who was diagnosed in her teens and now in her early 30's, it indeed is a right downer. She is now on tabs for life post-op which help her lead a normal life and they indeed have helped alot.

One thing that was not mentioned was the part about 'being prone to infection'. I've heard that common niggly illnesses like the common cold/flu for example are prone to people with Cushings due to low immune system.(hope i'm not scaremongering! )

However in my experience, it's no more than someone without Cushings. Did anyone find the same or different?

BanzaiBk

FAILFAILFAIL

My eltroxin seems to have "stopped" working, going in on Monday for tests:( So pissed off over this news:(

gurramok wrote: »

Keep your spirits up BanzaBk.
I know someone close to me with the condition who was diagnosed in her teens and now in her early 30's, it indeed is a right downer. She is now on tabs for life post-op which help her lead a normal life and they indeed have helped alot.

One thing that was not mentioned was the part about 'being prone to infection'. I've heard that common niggly illnesses like the common cold/flu for example are prone to people with Cushings due to low immune system.(hope i'm not scaremongering! )

However in my experience, it's no more than someone without Cushings. Did anyone find the same or different?

Thanks for the post gurramok! Didn't see it 'til now. I'd agree with the niggly illnesses, I never really had colds until last Winter and now they are very persistant, my consultant says it's because of my weakened immune system.