Cushing's Disease/Syndrome

craiginireland

Are stretch marks permanent?

Star Lord

Depends on how severe they are, but I think so.
Apparently they can be helped with things such as vitamin E and bio-oil, but I've never been bothered enough by them to try.

yellowlabrador

I'm due to start a 3 day urine collection and I've just discovered that I've developed a breast abscess at a spot they put one of the thingemijigs for the cardio. I'm so angry and also worried it could be MRSA. I'm hoping to treat it myself for the moment with hot salt poultices and if no improvement I'll have to see the doctor tomorrow.
It's paradoxical. For years I've been unwell and I've struggled without seeing a doctor and kept myself together and now I'm buggered. I've kept my eczema under control and now with all the meds and things like sticky plasters My skin is awful.

yellowlabrador

Yellowlabrador, a definitive Cushing's diagnosis takes months in this country as it depends on a lot of blood screening etc. Has your doctor said you have key symptoms?[/QUOTE]

Moonface
buffalo hump
fat lumps on my collarbone
upperarms fit for a bull
massive belly
I put on 3 stone in the last six months
red face, chin, bulls neck
sky high bloodpressure that is difficult to control


I'm an intelligent person and have a masters and an engineering degree. I speak 4 languages as a native. I can feel people switch off when they look at me and I can also see a bit of disgust. I try to be the jolly fat one but you still feel it. I just dress in bright clothes and don't look in the mirror. But it hard when you know more about a subject and people act as though they're condescending to let the fool speak.
I went to see my doctor yesterday morning and he told me he sent me to Bantry because he thought i might have Cushings even though it's very rare.
He's been my family doctor for 15 years but I hardly visited him until Xmas. At least he can remember as very sporty and fit and a size 12

BanzaiBk

yellowlabrador wrote: »

I put on 3 stone in the last six months

This is the biggest indicator for the onset of cushings. I myself gained 6 stone over 8 months! Are you doing the blood collections out of Bantry? I think the consultant who deals with pre-diagnosis Cushing's in Cork is still O'Halloran.

As for the stretch marks, as Damo said it depends on how "deep" they were. I think I might take some photos of mine and throw them up here for reference.

craiginireland

BanzaiBk wrote: »

My symptoms;


Chronic Insomnia (my insomnia is now categorised as transient)
Chronic fatigue (gone gone gone)

As the time of this post suggests I'm finding both of these an issue at the moment. Not to mention the other things too

Yellowlabrador: I know how you feel about people looking at you but you need to look after you and not what others think (easier said than done)

craiginireland

How are you guys all doing? I've had more people interested in taking the piss (literally) First time they said I probably hadn't got it, I repeated the test and then they said I definetly had it. So had the pleasure of doing it for a third time.

Fun times for all. Not. It's been a very very very long 8 months since I found out I might have this

Maria_b

Hi All

Could anyone recommend a consultant in Dublin who specialises in the Diagnosis of Cushings please? (Private hospitals preferably as I have full med cover)

I've been advised to go and get checked out for the syndrome after a discussion with my doctor as I've got about 90% of the symptoms! :mad:

PS. For the stretch mark sufferers - endermologie and chemical peels apparently work really well and I'm looking into having these done myself.

Maria xx

leather paws

Hi Maria_b

I was diagnosised in st vincents hospital in Elm Park, by Prof McKenna and his team,i believe he has now retired and Prof Donal O'Shea, and Dr Francis Hayes have now taken over and are extremely good doctors, i still attend the hospital and see them, they also have clinics in St Vincents Private Hospital just next door to the public hospital, they will know straight off if you have it or not,
Good luck!

Maria_b

Thanks Leather Paws , strangely enough, its those doctors I called and requested an appointment with )
I have left a message with their secretary so fingers crossed I'm not waiting too long for an appointment.

Do you mind me asking how you came to think that you had Cushings? I'm curious to know if its something that you are likely to develop as you age.

I was diagnosed with PCOS (polycystic ovaries) when I was 15, I'm 30 now but the symptoms have seemed to go into over drive the last 3 years. I've had my hormone levels checked periodically and there's no significant change with them yet my whole life has been turned upside down. I've been diagnosed with depression & apparently I'm bipolar type 2 and have also gained a lot of weight since 2007 (4 stone). My appetite is really poor so the weight is a mystery, I've a very attractive fatty lump at the base of my neck about the size of a mid sized hand and I've got the stretch marks, insomnia, hair growth, ulcer, zero menstrual cycle , constant headaches doc's got me on drugs to control insulin levels although I don't have diabetes etc etc... Its driving me up the wall. Its like I've been replaced with a faulty clone! I've gone from being outgoing, lively and successful to this!

craiginireland

leather paws wrote: »

they will know straight off if you have it or not,
Good luck!

It can take about two years to get a definite diagnosis on cushings - it's not something that can be done off the hoof

Maria_b

craiginireland wrote: »

It can take about two years to get a definite diagnosis on cushings - it's not something that can be done off the hoof

I'm aware that there's a lot of tests craiginireland, I'm not expecting them to know straight off. Be great if they could.

Did you have a hard time getting your diagnosis? I just want to go to see the consultant armed with information as I'm reluctant to be 'fobbed' off. The PCOS as it is, affects my fertility and being 30 I want to get myself in tip top shape before the biological clock stops ticking. The suggestion of cushings has me even more concerned... I'm eager to eliminate any barriers in the way of being happy and healthy (as we all are).

craiginireland

Maria_b wrote: »

I'm aware that there's a lot of tests craiginireland, I'm not expecting them to know straight off. Be great if they could.

Did you have a hard time getting your diagnosis? I just want to go to see the consultant armed with information as I'm reluctant to be 'fobbed' off. The PCOS as it is, affects my fertility and being 30 I want to get myself in tip top shape before the biological clock stops ticking. The suggestion of cushings has me even more concerned... I'm eager to eliminate any barriers in the way of being happy and healthy (as we all are).

I'm only 8 months into the process. I've had more blood tests and peeing into a bucket then i ever want too. Still nowhere near a diagnosis.

Maria_b

craiginireland wrote: »

I'm only 8 months into the process. I've had more blood tests and peeing into a bucket then i ever want too. Still nowhere near a diagnosis.

Ohh lord, please don't say that! 8 months you poor thing!! How come its taking so long? I was reading that if the pee tests and blood tests don't indicate cushings they use an MRI scan.. is this not the case with our 'fantastic' med service? Can you not just insist on one?

craiginireland

Maria_b wrote: »

Ohh lord, please don't say that! 8 months you poor thing!! How come its taking so long? I was reading that if the pee tests and blood tests don't indicate cushings they use an MRI scan.. is this not the case with our 'fantastic' med service? Can you not just insist on one?

To be honest, you're better off not reading all you can on the internet about treatments / symptoms etc. It'll only make you paranoid as hell

The MRI scan compliments the bloods and urine tests, either way it'll get done at some point.

Maria_b

craiginireland wrote: »

To be honest, you're better off not reading all you can on the internet about treatments / symptoms etc. It'll only make you paranoid as hell

The MRI scan compliments the bloods and urine tests, either way it'll get done at some point.

Thats true! Just the panic sets in when you hear 'tumor' and 'surgery' and I'm growing ever more concerned about the fertility thing. Like I said its 'tick tock' time for me.

craiginireland

Maria_b wrote: »

Thats true! Just the panic sets in when you hear 'tumor' and 'surgery' and I'm growing ever more concerned about the fertility thing. Like I said its 'tick tock' time for me.

Key things to remember are that the tumour is benign and the operation is very quick, I'm led to believe that they go in trough your nose and its very straightforward.

I'm not sure Cushings will affect your fertility but I could be wrong...

leather paws

Maria_b wrote: »

Thanks Leather Paws , strangely enough, its those doctors I called and requested an appointment with )
I have left a message with their secretary so fingers crossed I'm not waiting too long for an appointment.

Do you mind me asking how you came to think that you had Cushings? I'm curious to know if its something that you are likely to develop as you age.

I was diagnosed with PCOS (polycystic ovaries) when I was 15, I'm 30 now but the symptoms have seemed to go into over drive the last 3 years. I've had my hormone levels checked periodically and there's no significant change with them yet my whole life has been turned upside down. I've been diagnosed with depression & apparently I'm bipolar type 2 and have also gained a lot of weight since 2007 (4 stone). My appetite is really poor so the weight is a mystery, I've a very attractive fatty lump at the base of my neck about the size of a mid sized hand and I've got the stretch marks, insomnia, hair growth, ulcer, zero menstrual cycle , constant headaches doc's got me on drugs to control insulin levels although I don't have diabetes etc etc... Its driving me up the wall. Its like I've been replaced with a faulty clone! I've gone from being outgoing, lively and successful to this!

Hi Maria B,

Thats good you rang them, keep at them if they don't contact you but i'm sure they will, i'm no doctor, but from the way you describe it , it sounds like cushings alright, but once you get the proper treatment you be just be grand, i was 10, when overnight i went from a normally skinny child, to an overweight "lemon on toothpicks" as my doctor said, got the red hairy face, the "buffalo hump" on the back of my neck, the stretch marks, the headaches etc, my mam took me to a bogey doctor and he put me on slimming pills, then when i was 13 (i'm 33 now) and couldn't bend my feet when i walked and i was also getting bullied at school she took me to a "proper" doctor, he seemed to know straight off what it was and called the hospital and it all started from there, i was in vincents hos getting lots of tests, then i was sent to beaumount to get the tumour (non cancer) removed, they worked up through my nose, but they took off half of my pituary gland (don't know if thats spelt right) and left half of the tumour, but at the time in jan 1991 there was a big polictical thing going on with doctors/surgeons and the surgeon who did the op was sacked, then i was back at vincents where i overheard my doc saying the op made my cushings worse, so then i got both my adrenal glands out, then the tumour on my pit grew back and i got what they called nelsons syndrome then i got 5 weeks of radiotherapy which was fine as all my hair didn't fall out, i was just tired all the time, THEN my pit crashed, now i've got pituary failure, they say i'm like a car with no engine, but maria, i think i'm a one off, from all the support groups i've been in, once people get treated for the tumour they seem to be ok, i would love to hear from anyone that ended up like me, i feel alone coz a lot of people still have both adrenals, also take what craiginireland said about searching on the internet, i done that and ended up nearly going mad, everyone is different, and get treated different, at the time there were only 28 people in ireland that had cushings, so these days their more up to date on it so don't worry you be ok once you get looked after, let me know how you get on!

Maria_b

Wow Leatherpaws.. sounds like you really have been through the mill!! I'll keep you posted how I get on. Should have confirmation of appointment this wk. )

LegacyUser

I just got a call from my doctor today after been in for blood tests last week.

I went to the Doc 2 weeks ago as I had been feeling low for a few months now, I was extremely tired, sweaty, but on a little weight even though I've been on a diet as I'm bridesmaid nex so I ht month and ave been going to the gym 2-3 times a week, and in general I just felt exhausted.

I went for blood tests last week and the Doc rang today and asked me to come back for more tests as he fears I have cushing disease.

I have never heard of this and I am so glad I've found this site.

leather paws

Maria_b wrote: »

Wow Leatherpaws.. sounds like you really have been through the mill!! I'll keep you posted how I get on. Should have confirmation of appointment this wk. )

Ah it could have been worse haha, good luck Maria B, and keep us posted!;)

BanzaiBk

Hey guys! Long time and all that

Well I'm off in to get another (benign) lump off in a fortnight.

Cushing's ; the disease that keeps on giving :pac:

Star Lord

Best of luck BanzaiBk, keep up posted on how you're getting on!

j4m

Hi there,

I would be grateful for any advice. I was diagnosed with cushing's disease (tumour on the pituitary) in 2001 and underwent a failed transphenoidal surgery and successful gamma knife radiosurgery. Then in 2010, I was again diagnosed with cushing's disease, this time a new tumour grew on the pituitary and I underwent gamma knife radiosurgery again.

It can take up to four years for the radiosurgery to take effect and I am on long term sick leave at present due to chronic fatigue, muscular pain, burning sensation - particularly in the legs and neck/shoulders, memory/concentration is very poor and I cannot cope at all with any stress. So at present my quality of life is not good as I am only 34 and for the past ten years I have been battling this and feel the best years of my life are slipping away.

To top everything off there is the financial end of things and the medication I have been prescribed to lower my cortisol levels in the meantime is not available on the medical card. According to the HSE, Cushing's Disease does not qualify for Long Term Illness, but my consultant said it is long term (like diabetes) and it maynot be covered under the non-medical card scheme. I don't know if it's just me, but it seems that nothing in this country is simple, but is designed to stress people out. You would imagine that if your consultant prescribes medication (it's not expensive €25 per month, but that's a lot when your only income is illness benefit), that your medical card would cover it. I'm just wondering if anyone else out there with Cushing's has any experience of the LTI scheme or being approved for it - I noticed BanzaiBk said she is covered under LTI.

Any advice much appreciated :-)

BanzaiBk

Sorry for the late reply j4m

I do have a LTI card but was initially refused twice for the scheme because as you said Cushing's isn't recognised as an LTI in Ireland generally. My consultant in Cork (O'Halloran) appealed my 2nd rejection and presented a case to the approval board. I was in basically the same situation as yourself regarding chronic fatigue and bodily discomfort. I'm still in receipt of medication. At this time I've had 3 successful transphenoidal surgeries, never had any gamma knife surgery. I'll question my parents further about being approved for the LTI book but for now I'd write a letter to your consultant asking for assistance.

In the short term I'd consider (if you already haven't of course) altering your diet to more wholesome and preservative free foods. It won't completely eliminate your fatigue of course but it helped me greatly. If you're attending the Mater clinic for Cushing's you should be able to make an appointment with a nutritionist who'll be able to give you a vague food plan. Food alterations helped me a lot, for example eliminating processed dairy from my diet combated my "cloudy" concentration and eliminating gluten transformed the amount of energy I had.

It's a hard disease to live with to be fair, I've a lot of peaks and troughs but once you can manage yourself with tablets, diet and exercise it's bearable. I hope your situation improves soon, are you attending regular clinic?

j4m

Thanks BanzaiBk for the info.

It seems very strange that Cushing's is not considered an LTI given how hard it is to cure and it's management. From what I've read Newzeland, Canada, Australia etc. all considered pituitary tumours to be LTI's. Is it because we are such a small number here in Ireland and they don't have much experience of the illness?

You've been through the mill - 3 transphenoidals! Was each op for the same tumour or did you have new tumours?

I feel like I'm on a rollercoaster all the time, in the course of a day, I can go from feeling rotten to feeling that yes, I'm making progress. The chronic fatigue and the mood swings that accompany it are horrible. Normally I think I'm quite a nice person, but when I'm tired, I'm so tired that I can't think or talk and the smallest things upsets me and I lose my patience. I also get completely stressed out at the smallest thing, but since I started antidepressants they have helped a lot.

I haven't been seen by a dietician since 2001, when I was diagnosed with the first tumour. I was following weightwatchers and lost 1.5 stone (half of what I put on), but find it very hard and was hungry all the time and the weight loss was so slow I was demotivated by it, so whilst I'm not sticking to it anymore, I do watch what I eat. I've started Metopirone and hoping that this will help with all the clinical symptoms.

Are you able to work full-time? I'm assuming your Cushing's is still active and that you are taking meds to keep your levels down or was the 3rd op successful? I found after the 1st tumour that my memory and concentration never recovered fully and that I preferred repetitive work and my ability to learn new things has suffered. Now I'm afraid that it will be worse after the 2nd tumour. Do you find you have trouble studying/learning new things?

I appreciate your taking the time to reply to my message. Its good to have contact with another cushies patient as it's hard for people to understand the illness I feel. I attend the endo clinic at St Vincent's in Dublin regularly and I try to be positive and exercise and look after myself as best I can in the hope that I can speed up my recovery.

Thanks again.