Cushing's Disease/Syndrome

Star Lord

Sorry to hear it BanzaiBk, hope you are able to get back on course soon!!!

Things are still going well for me, still just on Hydrocortisol, and doin ok.
Feel quite lethargic at times, but think that's more down to burning the candle at both ends...

Haven't noticed myself being more prone to niggly illnesses, but I know that before the tumour was removed from my pituitary that I definately was!

BanzaiBk

Yeah I'll probably have to start Hydrocortisol treatment. I better get better or by jesus there'll be hell to pay:p Iono who's paying though:p

BanzaiBk

Hmm, results day today.

Bad news : Growths in the region where my pit. gland used to be.
Good news : They are benign.
Bad news : Blood pressure is way too low to be safe.
Good news : My current diet should help remedy this.
Bad news : Cholesterol is too low.
Good news : Again, current diet will help remedy.
Bad news : Something about hypertension in the veins behind my eyes? Fail.
Bad news : Biopsy on growths in two weeks.

I feel very happy overall, even though I probably come across as annoyed. I'm relieved that everything is generally OK and most issues that have arisen can be rectified/controlled with simple, non medicinal methods. Positive thinking anyway!

MOD EDIT the OP has asked me to clarify that from here on in, the health issues he posted about are UNRELATED to cushings.

Star Lord

Good attitude. That while not all being completely positive, is still pretty good! The benign growths can be treated/removed if necessary, and the blood pressure/cholesterol should be sorted by your diet.
Good luck with the biopsies!!!

BanzaiBk

Yargh.
/rant

On new medication and I'm having all bar one of the listed sideaffects.

• Dizzyness
• Agitation
• Excess palm and sole sweating
• Confusion
• Excess thirst

The only other side affect is panic attacks, and while I don't think I've had one at least half of the symptoms I have are similar to those of a panic attack.

Also, the benign lumps are now under "further investigation". Having a real FU world day today:mad:

Star Lord

Ah, that's horrible!!! I used to have almost constant dizzyness when my Cushings was first kicking in. Still get it at times whenever I exert myself, along with nausea. The excessive thirst is a killer too. Hope that these settle down for you, and that everything is all clear with the benign lumps. *hugs*

BanzaiBk

Finally! I'm having a biopsy tomorrow on the growths with the intention to remove them if they are seen as malicious by the surgeon. Started on 500mg of Eltroxin early last week aswell so things are starting to even out.

Star Lord

Great news, and delighted to hear that! Best of luck with the biopsy!!!

BanzaiBk

Thanks! I'm delighted with the time off, 3 days asleep sounds fantastic to me:p

Star Lord

How did you get on BanzaiBk?

Just reminded of here by both your request, and went for a checkup on Saturday, cuz my dad was a bit worried that I was putting on weight again. (Which I probably have, haven't been doing enough exercise wise etc...) The doc said everything looks fine, but am getting referred to Prof. Powells clinic in the Mater again as a mater of routine. (Plus to my shame, it's around 3 years since I was at the clinic last!!!)

BanzaiBk

Grand, they were non-malignant Cushings related nodules. I'm coming home this week to go to Powells clinic for an assesment ><! I'm going through rapid cycles of putting on weight then losing it. My metabolism has gone down the tubes like. I was put on cortisone treatment about 2 mths back and I blame that. I guess we'll see what's going on this week.

I'm unsure myself as to what the routine should be for going to the clinic. I have no regular appointments and the only other person I know who has Cushings that goes hasn't gone since November with no return appt. I don't even think they know what the proper cycle should be like. I go to the neurologist every 6 months without fail though, they seem more organised.

I hope your visit goes well, which I'm sure it will. It's hard to know what's going on with you body with this illness really.

Star Lord

Yeah tell me about it! Hard to figure it all out! Just after goin out at lunchtime there and buying Wii Fit for both my girlfriend and myself to use, as we both want to try it out and to do a bit more physically, and it's cheaper than a gym membership

What kinda levels of cortisone are you on? I'm on 10mg a day, was 30 originally. To be honest, I often forget to take it, and I think that the fact that I don't notice any effects from either taking or not taking it contributes to that, as if it changed anything I think I'd remember better!

Also my neurologist is in London, and said that he's perfectly happy with how everything went, and would only expect to have to see me again if I got a re-occurance.

BanzaiBk

5mg every other day. When I was on Eltroxin I often forgot about it until I put an alarm on my fone to remind me. I'd agree though, you don't exactly notice not taking it.

Star Lord

Think I'm on 10 cuz my body is not really making any decent amount.

*sets reminder on my phone to go off every day*

BanzaiBk

Off the cortisone, back on the Eltroxin I've broken out in hives/welts and back to the fluctuating temperature. Powell's team are great though, they seem a lot more knowledgeable on Cushing's than O'Halloran's team in Cork (not a criticism, I understand the rarity of the disease.). They've decided upon weekly testing for 8 weeks and some trigger tests.

Cushing's Syndrome = most ANNOYING disease ever.

Star Lord

BanzaiBk wrote: »

Off the cortisone, back on the Eltroxin I've broken out in hives/welts and back to the fluctuating temperature. Powell's team are great though, they seem a lot more knowledgeable on Cushing's than O'Halloran's team in Cork (not a criticism, I understand the rarity of the disease.). They've decided upon weekly testing for 8 weeks and some trigger tests.

Cushing's Syndrome = most ANNOYING disease ever.

Sorry to hear about that, but at least they're on top of your case now, and will hopefully sort something out for you! Not got a date for an appointment yet myself, but don't expect them to find anything out of the ordinary.

BanzaiBk

Being tested for ME and Chronic Fatigue Syndrome tomorrow on the advice of a work observation, sick with worry:(

ieadnwonk

OMG...found it here! damoeldiablo, u r really very helpful in this thread!


cushing's syndrome. I just realised myself that I might have cushing's syndrome. I am studying at UCD right now, just attend a lecture about endocrine and realised i have some of the symptoms.

I have some of the symptoms of cushing, haven't meet any doctor yet, will try to make an appointment this monday.

- I am overweight
- Thin limbs
- excessive hair on hands and legs
- striae in my belly, and arm (reddish mark)
- my skin is easily bruising and easily infected
- big upper trunk
- back pain (always)
- tiredness

I am really scared of this! I started gain weight when i was 9 years old, only my upper trunk get fat, but not very obvious in my hands and legs. Im now 22 years old.

do you think I have cushing's syndrome?
help me please!

BanzaiBk

We can't offer medical advice on this forum. Go and see your GP asap if you have any worries!

The_Conductor

ieadnwonk wrote: »

cushing's syndrome. I just realised myself that I might have cushing's syndrome. I am studying at UCD right now, just attend a lecture about endocrine and realised i have some of the symptoms.

do you think I have cushing's syndrome?
help me please!

Go to your doctor and get a clinical evaluation. The sympthoms you are discussing could potentially be any of a large number of things. Once you have received a diagnosis, feel free to come back here to discuss.
We cannot offer diagnosis here.

Regards,

SMcCarrick

Star Lord

As I said in reply to the PM you sent me ieadnwonk, it does sound like Cushings symptoms, but you'd do best to go to your GP and talk to them. Also, patients self-diagnosing and looking things up on the internet seems to be a pet peeve of doctors, probably best not to mention that, but just say that you're concerned about the various symptoms.

The symptoms you have could be the result of any number of things, but in any case it's best to get checked out by a GP first so that if they suspect anything wrong, then they can refer you on further.

Keep us posted on how you get on.

gpa

Amazed to find this forum - if it had been around 20 years ago it would have been a great help to me. However 20 years after having had a pituitary adenoma removed followed by 5 weeks radio therapy - alas to no avail I had a bilateral adrenalectomy - bingo instant cure. Ok the downside is that I have to take 2 small tablets every morning but the flip side is that with no adrenaline surges I seem to remain pretty unfazed in the midst of chaos. The osteoporosis was the biggest problem but after various different drugs over the years, most recently Fosamax for 8 years there has been noticeable improvement in bone density. My advice to anyone with concerns would be talk to the experts but make sure that they rule out messed up adrenals (I believe hyperplasia is the term) before they delve into your pituitary!

Any one got any idea the number of people with Cushings in Ireland?

gpa

BanzaiBk

I'd say very little confirmed cases, docs seem very reluctant to diagnose Cushings from what I've experienced. As with any endocrine illness, it's fairly hard to get a 100% diagnosis.

Still without me CFS and ME test results. I can only pray this is a good sign.

Star Lord

I'd agree with you there BanzaiBK, probably pretty low. My doctor "guessed" it was Cushings, and referred me on to the Mater for diagnosis. Took them 3.5 weeks to diagnose me fully and properly too

Hope it's good news for you BanzaiBK

Star Lord

Was at an outpatients clinic today (Mater Clinic - Dr. Firth - Prof Powell retired...

They reviewed the results from last tests I had done, and came to the conclusion that I may be completely cured... my pituitary function seems to be almost normal levels, and I may be able to come off the Hydrocortisone!!!

Took some more blood samples today, and want more next Wednesday, and after that I may be able to stop taking them!

BanzaiBk

Well it's with great sadness that I have to report that I have an abnormal growth in the region of my pituitary gland. Nearly 3 years after my original post I had assumed that I was long out of the reach of this bloody illness, I guess it can be dangerous to count your chickens.

Appointment with Dr. Firth in the Mater tomorrow and biopsy Friday.

The_Conductor

BanzaiBk wrote: »

Well it's with great sadness that I have to report that I have an abnormal growth in the region of my pituitary gland. Nearly 3 years after my original post I had assumed that I was long out of the reach of this bloody illness, I guess it can be dangerous to count your chickens.

Appointment with Dr. Firth in the Mater tomorrow and biopsy Friday.

Sorry to hear it.
Good luck with Richard Firth in the Mater tomorrow.
Will be thinking of you.

Shane

Star Lord

BanzaiBk wrote: »

Well it's with great sadness that I have to report that I have an abnormal growth in the region of my pituitary gland. Nearly 3 years after my original post I had assumed that I was long out of the reach of this bloody illness, I guess it can be dangerous to count your chickens.

Appointment with Dr. Firth in the Mater tomorrow and biopsy Friday.

Gutted for you!!!
Hope everything hoes well tomorrow/Friday for you!!!
Keep us posted, won't you?

BanzaiBk

Thanks for the posts Shane and Damo, I really appreciate them.

Today I'm in much better spirits after my appointment. I'm young, fit and generally healthy. I've overcome this once and this time I'm in a much better position to do so. Every part of me hopes that tomorrow I will have a clear result but in the possibility that it's not I'll be able to deal with it.

Star Lord

No problem! I'm in with Dr. Firth in mid December again myself. Had another MRI done back in October, as it was 5 years since my last one, and will be 10 years since my surgery on November 25th.

You have our well wishes and prayers that everything goes well for you, whatever the outcome. Should it not go as you hope, you know what you're up against this time at least, and how to deal with it.