adrenal cyst

Hi merryl , my symptoms started as pain snd fullness under my left rib cage. Over the last 2 months the pain has ranged from fullness to cramping, windy/gassy feeling, sharp pains aroubd the ribs, most pain om the left but sometimes on the right, lately I've been getting period pain including lower back ache and aching shoulders and tenderness in the upper rear ribs with burning heavy chest.

My gp advised ibs which I knew was rubbish as I told her I can feel something under my rib. I paid to go privately and had a clear colonoscopy but positive mri for the cyst. They can't determine exact origin bit the thinking is pancreatic or adrenal which my CT next week should reveal.

They haven't seen anything on my pancreas or adrenal gland that I'm aware of. I am just looking for info as not much out there.

My consultant has tried to reassure me but I am worried.

I hope you will be sorted soon.

I spoke to my Dr today and he said the only results he had from the hospital is they called it an incidentaloma. I typed this in and it could be quite a few things including a cyst what you said it could be. I am still waiting to hear from the hospital about an appointment. I am also phoning the secretary in the hospital later to find out more. 

Yes you are right it is quite rare. I phoned the secretary at the hospital today and she is going to ring me back and let me know when my appointment with the endocrinologist is due. I will probably have more tests done after I see him. 

I get lots of sweating, palpitations, dizziness, nearly passing out and more. I passed out in the hospital about 6 months ago and my blood pressure was 80/40 very low, but the dr thought it was A-FIB of the heart causing it, but now I think it was the adrenal gland all along,

When is your CT scan due? Let me know how you get on.

Hi merryl. My ct scan is tomorrow. I will get results when I see my consultant on Friday. Incidentaloma I think just means a mass or whatever discovered by accident usually when looking for something else. I've read that adrenal issues can cause the things you've mentioned and I've always had borderline low bp and some palpitations, also acne on my back which is mild but always there. I will let you know how I get on. Hope you get an appointment soon. Is it via nhs?

Hi, I was referred for the CT scan by a gastro Dr looking for something else and that was when the mass was discovered. I spoke to the endocrinologist's secretary yesterday, and she said my appointment is 2 months time. I thought it would be sooner than that. Yes it is via nhs. Are you from the UK?    

Yes I'm from the UK, Wales actually. I have paid privately so far as my gp said the wait to see a gastroenterologist was 12 months! I've paid for tests and scans too. Of course if I need an operation I will refer back to the nhs I imagine. 2 months seems an awfully long time to wait, in limbo. How are you feeling? My latest symptom is mild itching. Starts in one place then moves somewhere different. My gastro was looking for chrons (don't have it after all) when they saw my cyst.

Hi, I am from S Wales. You must have paid a lot of money on scans and tests. I was referred to a Gastroenterologist because of food sticking in my chest and lost quite a bit of weight. I waited about 4 / 5 months to see the Gastro Dr.  The Dr examined my upper abdomen and said I will refer you for a Ct scan of the thorax, abdomen and pelvis. He put urgent on the form and I only waited 5 weeks for the scan. I think he might have felt something in my abdomen. Two weeks later I had the results. Now I think the problem with food is to do with the mass. I read online that the stomach muscles don't work properly after eating, especially if you got a pheo, So not getting enough nutrients.

When I had the results there was no mention of a problem with my digestive system, so it must be caused by the mass. My Dr said I am also low in vitamin D so now on meds for that, It never ends.

What part of Wales do you live?

      

I am from Swansea. I think the gp thought I was non urgent and it was surw it was nothing even though I said I could feel something inside me. I have paid a lot but my mum and husband have paid some of it. It's around 3k so far. I was actually being tested for chrons and they saw the cyst. I was told by my consultant not to Google which I have done and scared myself silly. Reading that cysts can be malignant if over a certain size, which mine is. But I've also read of large ones that were benign.

What part of S Wales are you from?

I live about 10 mins from Caerphilly. When this problem started over 2 years ago, I decided to see a private gastro Dr because I thought it was a digestive problem and I didn't want to stay awake to have an endoscopy. I paid just over £2,250 to have it done and another £140 when I had the results. I am sure I also paid for the first consultation but can't remember how much. A Ct scan must be expensive. 

Good luck with your scan.

I googled about the incidentaloma and it can mean quite a few things. I  checked the symptoms of each one and my symptoms match more with a pheochromacytoma.  It is frightening reading about it. A pheo can be dangerous too. Perhaps the 24 hr urine test and the blood test I had during my stay in hospital was not active at the time.

 

It's all the more scary due to not many people sharing stories about it. And Google has some horrible stories.

Why are they waiting 2 months to see you if it could be a pheo?

My scan has been delayed by a couple of hrs as the receptionist gave me the wrong pre scan info so I ate something thus morning.

I expect you will be glad to have the scan and get it over with. When I had the CT scan I had to drink this stuff the night  before and then the next morning I had to drink it again 1 hour before the scan. It lights up your insides and can see things more clearly. I also had an injection in my arm just before they done the scan. Did you have to do this?

When I was in hospital after they found the mass a Dr said I was having symptoms when I was having the 24 hr urine test so don't know why they can't see me sooner. I have not seen an endocrinologist yet because I was on the cardio  ward when in hospital.

What time is your scan now? 

 

The radiologist only wants me to drink water, no prep. My gastro consultant advised me that if I needed to see an endocrinologist , if possible to see one privately and that would speed up the nhs process as sometimes waiting to see the consultant first off is what causes the longest delay. I know consultations are £150 aprox.

I am here now waiting. Should be 3.30 ish.

I suppose they got different ways of doing the ct scan. I hope all goes well  for you. Who will give you the results? 

I think so, they did a couple of scans and then a couple more with contrast. The radiologist will review the scans tomorrow and my gastroentorologist will give me results on Friday.

I have cried a lot today.  Yesterday I was upbeat, today not so much. 

It's horrible place to be, as you know.

I would be chasing that 2 month appointment Merryl, I don't do waiting lol.

Hi my name is Margie I have an adrenal tumor on my right side I had to go on a three week diet to shrink my liver because I don’t large my letter they did remove the tumor and is very rare it was 6 cm x 2” wide and it was called an abnormal which is benign tumor thank God a year later I am still remaining with pain on my side I get hot flashes sweats and I’ve had CT scans CT  angiogram And still nothing as to why I still have pain after a year from surgery myself I think it’s   Scar tissue   They still insist to keep running more test I don’t understand it I wish this pain would stop so I can go on with my life I was working out of the gym five days a week and now I can’t do anything I was actually feeling no pain with the tumor inside me I had the side effects of someone with  menopause  between working ground on your: thyroid your breast and your adrenal gland on my left side on my adrenal gland I have a 1.8 cm cyst growing on that side but they refused to take it off why I don’t now  I do know that half of the adrenal tumors are benign and they’re very rare tumors which I was thinking God that was a real rough surgery to go through but I did it and I’m here today but I still have pain I wish the best for you if you have any questions feel free to ask me I just had my surgery on September 6, 2016 so it is only been one year since my adrenal tumor removal 

 So the side effects are hot flashes rapid heartbeat sweats blood pressure up and down anxiety and there’s a few more I just can’t think of them right at this moment