Cushing's Disease/Syndrome

The_Conductor

My wife is with Firth- he the consultant who handles all the diabetic pregnancies and thyroid problems in Holles Street.

I'm thrilled that you're in good spirits- they say the manner in which you approach something is a big factor in its outcome.

Best wishes,

Shane

BanzaiBk

Most importantly - Benign tumor \o/!

Thanks for the well-wishing posts and PMs. It's lovely having your faith in humanity restored every so often.

Bizarre few days all the same. I had my appt. with the quite lovely Dr. Firth who was very thorough and determined in his thoughts and plans. He was confident that the tumor would be benign and it was thankfully. Due to it's proximity to my voice box it was removed immediately. Slight scarring possible but the medical team seemed more concerned about that then I was or will ever be.

It would seem that I have a more intense endocrine problem than anyone could have diagnosed earlier. As often is the problem with these things, it usually takes an event for them to become know or apparent. My follow up appt. is a week from today to give time for a proper diagnosis.

Star Lord

Had a blood test on Monday, and got a call back from one of the doctors in Dr. Firth's clinic today.

My cortisol levels are completely normal (without taking any supplemental hydrocortisol) and my kidney/salt levels etc... are all completely normal as well, so I'm off the hydrocortisol for good, and in my follow up appointment on Feb 10th, they're expecting to discharge me back to my GP.

Best news they could have possibly given me this Christmas!

I was 10 years post op on Nov. 25th this year too

craiginireland

I've just been told by my doctor I may have cushings syndrome. Reading some of the things here has scared me ****less.
I've been referred to Tallaght Hospital. Anyone been there? How long does it take to get an appointment?

Star Lord

Honestly, put all thoughts of what the symptoms are/can be out of your head completely. You will know the ones you already have, and any that you don't have, then that's a bonus.

You'll more than likely have been referred to an endocrine specialist in Tallaght. What they'll do are a series of blood tests, more than likely also xrays and possibly MRI/CaT scans. None of these are anything to worry about, as they're generally all straight forward, easy to deal with and are just to determine: 1) if you do have Cushings Syndrome/Disease, 2) If you do have it, what the cause is, and where the problem lies in your body, which could be your andrenal glands or your pituitary gland.

The best thing to do is to look at it this way: If there is a problem, you now know about it, and they are taking steps to diagnose and treat you so that you can get back on the road to recovery.

Cushings can be difficult to deal with, but so long as you think positively, then you'll be able to deal with it and get through it.

If you have any questions, the rest of us are here, and if you need/want to ask in private, then you can feel free to PM me.

BanzaiBk

Hey Craig,

a bit unfortunate that you found this thread which is full of a lot of worry on my own part! I would venture that post 34 was my last genuine Cushings worry. Everything that has followed this post has most likely been misfortune. It would be fair to say that some of the benign growths (growths! not tumors ) were connected with my condition but a lot of that is luck of the draw.

Damo's recovery/control of CD has been fantastic and the most important idea I took from his posts was to remain positive always.

It takes a long time to be diagnosed with Cushing's, as with any other endocrine illness. It took me 5 years to get a diagnoses! As Damo already said, you know what your symptoms are so don't frighten yourself with the internet Go to your appointment with a positive attitude, be honest with the consultant about your symptoms and deal with his opinion the best way you can.

The consultant in Tallaght is Dr. Moore, the same person who gave me an early diagnoses of Cushings. He has a lot of experience with the disease from abroad and perhaps this is why your GP referred you to Tallaght. My own consultant is Dr. Firth in the Mater which is because I am post-op and have experienced growths.

Also you should feel free to post as much as you can in this thread, it's a great resource for other Cushing's sufferers.

craiginireland

Thanks guys, brought my letter down to the hosp this morning. Wonder how long I have to wait. :eek: Is it worth going private?

3 hours I never heard of this but it's a major shock now.

Thanks for the advice.

Star Lord

That decision would have to be a personal one I think. I know when I went to my first outpatients clinic appointment in the Mater, (had to bus it down from Donegal at the time) they decided there and then that they were keeping me in. Apparently I was one of the most rapidly progressing cases they'd seen. Was in there fro 3.5 weeks, getting a bunch of tests done, but they only kept me in as I wasn't able to travel over to the hospital every day to be honest, and days that they weren't doing anything, I was able to walk into town.

Personally, I'd say only go private if (1) you would rather skip any waiting lists (2) you feel that you're left waiting longer than you should between tests/appointments and (3) you can afford it.

Don't let it be too much of a shock to you, think of it this way, there may be something wrong, but they're going to get to the bottom of it now, and the good thing is it is very treatable.

BanzaiBk

Something I left out of my post, as Damo said it's extremely treatable and you wouldn't know you had it as long as you take your meds every day. I wouldn't go private because the chief consultants in Ireland and the UK are based in Dublin and work through the public lists. Bittuva waste of money and the waiting time isn't that long either, probably 1 month for your first appointment.

craiginireland

Thanks just had a bad experience with tallaght and their waiting times. I'm just playing the waiting game now. Ho Ho Ho

Starting to feel a bit better but ya know it's the waiting that kills ya

BanzaiBk

Heading into the Mater in ten minutes for my second appointment after getting the tumor removed. Unfortunately I'm barium meal'd to the gills and tbh I'd love a bacon sandwich ..... oh the trials of life :pac:

Star Lord

Good luck, and sure treat yourself to a nice bacon sambo when you're done!

BanzaiBk

Went to see the SHO today instead of Firth to speed things up a bit. They've ceased all my medications for 2 weeks (boooo....) and for some reason advised me not to go snorkeling/scuba diving. At first I thought it was supposed to be a euphemism for my personal life but they were serious :eek: Unfortunate that I'm going to miss all my planned scuba slash snorkeling adventures in Cork...:rolleyes:

Did you ever go to an appointment and feel like you learned nothing? Like they were super nice as usual but I was literally scanned, warned about diving and told not to take my meds (which had been 125 mg of Eltroxin) for 14 days.

btw watching aunt cook bacon :V

Star Lord

Oh I know those kinda appointments all too bloody well, and will be glad to be finally shot of them for good (assuming I do get fully discharged in Feb)

(And can your aunt do me up a bacon sambo n drop it round my work? Ta! )

craiginireland

What's the diving thing about? Mmmmmm bacon

Star Lord

I'd assume it'd be due to the barium meal, that it'd be a bad idea to go diving/snorkelling.

BanzaiBk

I'm back!

Was out of action for the best part of January, in and out of hospital. Over the holidays I had noticed that I was gaining a lot of weight very rapidly (unusual because I stick fairly rigidly to a high lean protein, low starchy carb diet) and my hair was become very weak/lifeless. After my appt. with Firth at the end of December it was confirmed that my thyroxine levels were after dropping quite low again and I was having Cushing's symptoms again. Ugh!

Anyway after a fortnight of tests and a coloured MRI I've been put back on 800mg of Elxtroxin per week (125mg/100mg every other day, morning/evening meal dosing) for the next 6 months in an attempt to control the issue. Most of this is down to the combined stress of work hassle, family disputes, relationship dissolving etc and I should have been looking after myself a bit better! Anyhow I'm back in track now and am in the process of reassessing my stresses so I can be a bit more vigilant.

Quick chat with Firth vis a vis Cushing's in Ireland and he told me that the number of diagnoses have tripled in the past 5 years. He had some interesting points regarding the use of steroids in childhood linking to Cushing's (my own thought cause, from chronic childhood asthma) and apparently there will be a debate about such at the end of March in Trinity College.

Kind of relevant - met a horse at the weekend with Equine Cushing's Disease :pac:

Star Lord

BanzaiBk wrote: »

I'm back!

Was out of action for the best part of January, in and out of hospital. Over the holidays I had noticed that I was gaining a lot of weight very rapidly (unusual because I stick fairly rigidly to a high lean protein, low starchy carb diet) and my hair was become very weak/lifeless. After my appt. with Firth at the end of December it was confirmed that my thyroxine levels were after dropping quite low again and I was having Cushing's symptoms again. Ugh!

Anyway after a fortnight of tests and a coloured MRI I've been put back on 800mg of Elxtroxin per week (125mg/100mg every other day, morning/evening meal dosing) for the next 6 months in an attempt to control the issue. Most of this is down to the combined stress of work hassle, family disputes, relationship dissolving etc and I should have been looking after myself a bit better! Anyhow I'm back in track now and am in the process of reassessing my stresses so I can be a bit more vigilant.

Quick chat with Firth vis a vis Cushing's in Ireland and he told me that the number of diagnoses have tripled in the past 5 years. He had some interesting points regarding the use of steroids in childhood linking to Cushing's (my own thought cause, from chronic childhood asthma) and apparently there will be a debate about such at the end of March in Trinity College.

Kind of relevant - met a horse at the weekend with Equine Cushing's Disease :pac:

Oh wow, rough month for you!!! Hope everything rights itself for you with the elxtroxin!

I remember reading that Cushings Disease is quite common in horses back when I was first reading up about it all those years ago!

LegacyUser

Just wondering if anybody had the details on the debate in trinity??

Cant seem to find any info on the TCD website.

Thanks!

craiginireland

How are you guys getting on with Cushings? I'm still not near the end of the 7 month waiting list Tallaght hosp. put me on

Star Lord

craiginireland wrote: »

How are you guys getting on with Cushings? I'm still not near the end of the 7 month waiting list Tallaght hosp. put me on

Well I'm completely off any medication since early Feb. and doing great! Only thing I have to show is the stretch marks.

I'd personally take it as not being a bad thing that you're on a 7 month waiting list, as that shows that your doctors aren't so worried that they're having to try to push you through as happened with me.

Don't think you mentioned, but of the many and various symptoms of Cushings, which ones do you have?

BanzaiBk

DamoElDiablo wrote: »

Well I'm completely off any medication since early Feb. and doing great! Only thing I have to show is the stretch marks.

SO JEALOUS! Congratz though

Hey Craig, the waiting must suck massively. Try not to over worry though, but if you have any doubts etc then you should say it to your GP etc and they might be able to hurry you up if necessary.

I'm after gaining 16 pounds (1st 2 pounds). Kinda devastated to be honest. No other news really, still on loads of eltroxin etc. Boo!

losinghope

Hi guys,
I am 6 months post op from cushing disease,I had tumor on pit gland.
I am very unwell at the moment and came across this website and would like to ask you guys some questions.
i am 33 year old male.
i am currently on 35mg of hydrocortisone, 0.1 mg of flutorcortisone, and also on rivotril tablets for my terrible anxiety. I was on 90mg of hydrocortisone in december so i have come down alot.

My testosterone levels are low normal, 8.9, so I started testosterone replacement theraphy yesterday using a gel once a day.
My suffering was terrible before i was diagnosed, but is worse now, 6 months post op. My aches and pains have subsided alot but mentally I am a mess, I cant put it into words how I feel but i feel like im going mental/crazy/.
At the moment i am at my lowest, i am on the verge of losing my job and my girlfriend, "I have no sex drive and only had sex twice in the last 2 1/2 years. My endro thinks that my mental problems are not connected to my cushing and really my question is have u guys suffered mentally as a result of this disease, as any thing that I have read about cushing post or pre op is the physical pain and no mention of mentally suffering,i.e depression, anxienty, no get up and go, lethargy, etc.
Thanks Guys.

BanzaiBk

Firstly, you really need to go to your GP and discuss the problems you mentioned. We can't give medical advice on this forum

It's easy to fall into a pit of darkness with Cushing's : You don't know how to make yourself feel better, doctors are unsure how to treat you, people don't feel that it's a serious problem because you're not "suffering" in their eyes, constant lethargy. It can be , mentally, very stressful. If you feel that you can't cope and are running the risk of losing parts of your life then seek medical advice.

As an aside, I often feel quite run down both mentally and physically. Do I think it's linked to the Cushing's? Most often it is I guess. The only way I can overcome it usually is exercise and talking about it with my friends/family. I've had bigger problems in the past though and went straight to my GP.

Star Lord

Hey Losinghope, sorry to hear that you're having such a hard time post-op. I know that I did feel quite lethargic at times, but not to the extent that you seem to be suffering. I know that post operatively I did get quite depressed at times, which is not what I would have expected at all. But again, yours does seem to be quite a bit worse in that regard. Personally, I made huge efforts to lift myself out of it, and that did eventually work in lifting me out of it properly. One of the big things that effected me post-op was that my short term memory was completely shot, and as I was going into my final year of my course after recovering, I found it incredibly hard to take information in when studying. I would literally read a page, and by the time I'd gotten half way down I couldn't have told you what was at the top. This did right itself eventually though (Thankfully!)

It does sound to me like a deep depression has settled over you, and I would say that the chemical changes that your body is experiencing may have something to do with it. I know that personally I felt that was to blame, and though it was probably something akin to withdrawal symptoms.

As BanzaiBk said though, we are unable to offer any kind of medical advice here, so you should possibly check with your GP. IMHO keeping a positive frame of mind always helps, convince yourself that you are going to get over it, and the battle becomes easier.

losinghope

Thank you sooo much guys for your reply, its nice to hear from people like urselves that have gone through this terrible illness.
I will keep u posted how im getting on if thats ok.
Unfor today is bad, spent all day in bed extremely tired and bad anxienty. They tell me that cortisone is the stress gland and thats why my anxienty is so bad. My cortisone levels were 7-10 higher that high normal pre opt. They also think that I have had cushing for 5-7 years before i was diagnosed so because i had it so long it will take along time for me to get better.
I will keep fighting on the best i can but i am scared that it will get the better of me.
Im just a little puzzled guys? this illness is terrible and they say the recovery period is actually worse than pre op, if you guys have not really suffered badly mentally? what made this illness bad for yee, like how bad did yee feel before u were diagnosed? ie was it the terrible aches and pains in ur body.
Before i was diagnosed i could barely walk I was so tired and weak and had terrible aches and pains but the mental torture was 5 times worse than the physical pain and still is.
I dont see my GP but see my endro about every 4-6 weeks and ring him if i need to. But really they dont know much and talking to you good people is better than talking to any doctor

craiginireland

DamoElDiablo wrote: »

Well I'm completely off any medication since early Feb. and doing great! Only thing I have to show is the stretch marks.

I'd personally take it as not being a bad thing that you're on a 7 month waiting list, as that shows that your doctors aren't so worried that they're having to try to push you through as happened with me.

Don't think you mentioned, but of the many and various symptoms of Cushings, which ones do you have?

Thanks Guys.
Hmm Symptoms... Stretch marks (**** loads of them ) Weight gain. Bout 2 or 3 stone in over a year. I feel and look like the marshmallow man, constantly tired and seem to take forever to recover from illness' and injuries. And thats just the ones I'd admit in public lol.

Delighted to hear that there are some people recovering from it..

Star Lord

I think that shortly before I was diagnosed I put on around 2 stone in around 6 weeks. I dread to think what I would have been like if I had not lost weight several times pre-diagnosis! I had gone on several 'faddy' diets, believing that the weight was just a normal weight problem. I'd stick to the diets religiously, lost 1.5 - 2 stone on them over a month or two, then stop losing weight, and start putting it on again without changing my eating habits. My folks admitted to me after diagnosis that they felt awful, because they thought I had been scoffing burgers and chips and chocolate etc... all the time behind their backs!

I had the weight gain, very deep, very purple stretch marks (You could see blood vessels pumping through the ones under my arms!), the "moon face", higher blood pressure, 'buffalo hump", muscle deterioration, incredibly dry skin (Still have dry skin, but not to that extent!) constant thirst, terrible pains (particularly in my back when I lay down at night, felt like someone stabbed me in the back with a chisel!), very VERY frequent need to pee, and now and then I would get "Vertigo", although this was more prominent when I look back at what was probably the onset of the Cushings.

That's just what I can recall offhand, although I'm sure there were some other symptoms too. And I'm over all of them bar the stretch marks now really, so keep the head up and convince yourself that you can make it through it too!

yellowlabrador

hi, I've just come back from the doctor's.
He'd referred me to Bantry hospital after I'd had 2 bad unexplained falls and after being off work since Xmas with sky high blood pressure and urinary problems. I thought I was having problems with my heart and I was also wheezing and having trouble breathing.
I've struggled with my health for the past 15 years but I'm one of those people that doesn't go much to the doctor's as I never got any proper help and often felt a lot worse after treatment. This usually meant a dose of deltacotril.
At the hospital the doctor took one look at me, checked the palms of my hands and said that he suspected a problem with overproduction of my adrenal glands.
I realise now I have the traditional cushings looks, hump and all. I've also put on a lot of weight.
I'm now going to do the 24 h urine test, 3 days in a row, and have to have an abdominal scan.
My doctor checked my past bloods and they were all good.
I feel really down in the dumps and don't know where to turn. Will it take long to get some kind of diagnosis? My docotr also advised me to apply for disability benefit. Are there any problems on that score?

BanzaiBk

My symptoms;

Weight gain (I've now lost 4.5 stones of the 6 that I gained)
Stretch marks (all across my tummy, ribcage, underarms. Still have most of them)
Moon face
Chronic Insomnia (my insomnia is now categorised as transient)
Constant thirst (completely gone)
Erratic pain (upper back, completely gone)
Chronic fatigue (gone gone gone)
Random hair growth (gone, probably more noticeable for me 'cos I'm a girl )
Joint swelling (ankles, knees. completely gone)

The only thing I have issue with now is the stretch marks. Some people have seem them and thought they were scars!? Not keen on Bio Oil but in general I'm not that bothered by them.

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?