adrenal cyst

Yes it's a good sign that they csn let you wait 2 months. Have you had results from the blood tests? Would they send those go your gp?

Today my arms and legs but arms especially have been achibg very badly. I've taken paracetamol , coedine and ibuprofen plus rubbed a tonne of deep heat but still they ache.

I will let you know how tomorrow goes.

Sorry to hear you have had a bad day. I have'nt had the results of my tests. My Gp said that they don't have the results in the surgery.

Good luck for tomorrow. 

Hi merryl. Saw my consultant today who confirmed I have a tumour on my adrenal gland. He believes it to be a pheo which hea 99% sure is benign. I see my endocrinologist Tuesday to see where we go next. He may want to watch it but I want it out to be honest. My gastro consultant said they only operate if they have to as surgery comes with risks, as do all ops. I think I felt it on my abdomen in the bath earlier although it could be wind 😉 how are you? X

Hi, At least you know what it is now. I have to wait 2 months for my results. One good thing about a Pheo, it is slow growing.so it won't change much in 2 months. I forgot to mention when they gave me the results in hospital I was also told I have a nodule on my lung but the Dr said it is nothing and very small. 

If mine is a Pheo I hope it is benign because most of them are. I don't blame you wanting it out I would be the same. It is like having a ticking time bomb inside me because you don't know when the next attack will come along. I have'nt been too bad today.

What are your main symptoms?

Take care, x

   

Yes my consultant told me to be positive. I think I've had some symptoms for a while looking back. I had anxiety which they said was post natal as started when my son (now 7) was a few months old. I've had some palpitations and ocassional sweats. I went to my gp about 6 months ago saying I didn't feel right, aches and pains all over, tired a lot, my husband said I was always ill. At the moment my upper back is aching and feels tender/mildly painful when I sit against even soft cushions. I will be mentioning this to the endocrinologist Tuesday. If he says it's not related , I want a spinal ct. My gp should be more inclined to listen to me after misdiagnosing me again.

I think I have had mine for quite a long time too, and it has gone worse over the last 2 years. I feel very weak at times as if I am going to pass out. I got no energy at all. Another thing I have noticed lately is sweating in the palm of my hands and feet, I never usually sweat in those places.  Like you I I have felt ill for a long time and my family said I always got something wrong with me. They was shocked when I told them I had a mass. 

As I mentioned before I am on low on vit D and I think it has damaged my teeth. I need to see my dentist but don't feel well enough to have anything done. I could'nt cope with that at the moment. One of the worse symptoms I have is the weakness. If I try to do any jobs around the house I feel weak and start sweating. Be glad when it is sorted out and put all this behind me. 

Let me know how you get onTuesday. Are you still going private?

 

I do recall having moments of just feeling like I had to sit down but always told myself to get a grip.  Had quite a few incidents where I would suddenly get palpitations and have to stop what I was doing and put my head between my knees but these have not been every day or even every week although I think my antidepressants may have been masking my symptoms.

I am getting concerned with the aching arms and shoulders I have as I've read this isn't linked with Phaeo, so my mind is racing ahead to thinking of cancers, spreads etc.  I had a chest ct which my consultant didn't even comment on so I assume it was clear.  Do chest ct scans cover your shoulder areas?

Yes paying privately Tuesday but I think I will then be referred back to NHS but not 100% sure.  It will be good to speak to the consultant who specialises in this as my gastro couldn't answer a lot of questions as this is now not his field. 

Such a stressful time, as you know.  I too am looking forward to the days when I look back on this as a blip in my life.

I don't know if a ct scan can show the shoulders. With a ct scan you have to put your arms behind your head. Why don't you google it and see, it should say. I am worried about the nodule on my lung. The Dr at the hospital said it was nothing but it is something to me.

I feel weird sometimes and can't explain why. Is the consultant going to put you on meds?  

   

It's hard to take on what they say.  

Do you feel weird like anxious weird?  I went for my anniverysary meal today and couldn't stand all the noise and people around me.  I hardly touched my food and just wanted to get out of there.  My heartbeat was up and I felt agitated.  I felt sorry for my family as they were enjoying.

I've not been put on any meds at all yet.  Roll on Tuesday!

I know how you feel, it is readful. I cant cope with noise or people. The agitated feeling is awful, I am not sure if that is a surge of adrenaline going through your body. When I get that I feel slightly breathless and it feels as if my heart is going to stop. I also feel hot and get facial flushing when I start eating. I also noticed I get burning in my lower legs when standing up.  

I don't go out far now and especially not on my own, I don't feel safe. I think I should be on medication not left for 2 months suffering like this. I can't cope with it much more. I get ringing in my ears and sometimes it is screeching through my head which makes my head feel fuzzy.  I believe this is quite common with this condition.

Hope you feel better today. 

  

   

I can't believe this. I am watching episodes of an Australian hospital and a woman is on there with an adrenal tumour. It is 12cm quite large. I am going to watch the rest of it now.

God Merryl i feel for you, those feelings are awful. It really impacts on quality of life, maybe if you ring your consultant's secretary and explain things are bad for you, they could bring your date forward? Has to be worth a try.

I Will search for that program, would like to see it. I have slept a lot today, just had dinner cooked by hubb (thank god as i cant be bothered).

Hope you have a nice evening

I will ring the secretary today. I just wondered if you have had a 24 hr urine

test. This test is usually done before the scan. If the urine test comes back clear they won't do a scan. Wth me I had the scan first because they was

 looking for something else not Pheo.

Did you get hold of the secretary?  I have had the urine test but not the results (they take 2 weeks apparently).  I'd already had my scan booked for 2 days after as they weren't sure where the cyst was coming from.  How do they know if a tumour is a pheo or not?  I'm so conufsed with everything.

I tried 3 times to ring the secretary but the switchboard very busy. I will try again tomorrow. I had the urine test done over 4 weeks ago but don't know the results.  I don't know how they can tell if it is a pheo or not. How big is your pheo? They did'nt tell me how big mine is or which side it is in but I think it is in the left adrenal. I should have asked more questions when I was in the hospital. The Dr told my daughter that I was having symptoms during the urine test. That is a good thing because they can tell if it is active or not.

Is it tomorrow you are seeing the consultant?

Hi Merryl, sorry for the delay in replying.  I did go to see my specialist yesterday but my gasto's sectetary had failed to provide him with all my scans etc so he could only advise me based on my information to him and give general thoughts.  He has left me a voicemail today saying he has since seen my scans and belives it to be an adrenal cyst or a peritoneal cyst which he thinks looks innocent.  He wants to wait for my 24 urine test results which he thinks will come back negative, if so he wants to wait and repeat in a few months (I am going to argue that with him though).  He has registered me on his nhs patient list now so at least I don't have to pay to see him or for anymore tests.  I guess the next step depends on the urine results but he seems confident it's not a pheo.  I have left a message for him to call me back as I couldn't catch everything he said on the voicemail.  I will update you again later once I speak to him in person.  I hope you're feeling ok today?

Hi, so you haven't got any definite answers yet really. I know some Dr's haven't  heard of a Pheo and because it is very rare they they don't know how to treat it either.

I phoned the secretary and she could'nt give me any answers. I asked her if she could give me her email address and send her my symtoms to pass on the the endocrinologist (someone else told me to do this? but she said I will have to go back to my own Dr.  I managed to get a Dr to ring me from the surgery yesterday and told her I need meds to control the  surges and she said she can't give me anything until I see the Endo Dr. She also said the mass is lumpy. First time I heard this. 

The secretary said 2 weeks ago I will have an appointment with the Endo in 2 months, but she said yesterday that I was not on the list yet. At the moment I don't know where I am. No results yet for the 24 hr urine or any blood tests I had when I was in the hospital 5 weeks ago.

Do you know how long you will have to wait to see an Endo on the NHS?

It sounds like you're being given the run around. I saw my endo privately which he wasn't impressed with and said I should be seen on nhs like all his patients. He already called me to say when the urine results are back (should be monday) that he wants to see me at The Heath and he implied it wouldn't be long to wait and a rescan in a couple months if the urine us negative for pheo. He said pheo are do rare he collects them like rare butterflies! He has registered me himself on hus nhs list. So far I sm very impressed with his efficiency. Do you have your consultant's email address. Mine gave me his details on a card.

No, I haven't got the consultant's email address, I haven't even seen him yet since I was told I had a mass. I had a 24 hr urine test for Pheo done last year when I was sent to the assessment center at the hospital because of symptoms then. A general Dr ordered the test but it came back normal so perhaps the endo thinks this recent test will be normal. I am fed up with it all now between the symptoms and useless Dr's. They operate down the Heath for the adrenals. My Daughter works there. 

Do you know your consultant's name? Mine is David Scott-Coombes. I can pass you his contact details if it would help? I know he operates too as he said he has a couple of pheos to take out tomorrow.

I know his name it is Dr Prem. If you gave me your consultant's  details do you think he would get in touch, because normally you have to be referred to a consultant. I don't know if my consultant does the Pheo operations, if he doesn't and mine turns put to be a Pheo I would probably go to the Heath too.

I don't know where to turn next.  

Well I was copied in on a letter sent to my gp from the endo and I only saw him Tuesday so he really is on the ball. I would ask if you could be referred to him.

I sent an email to my local health board yesterday and explained to them what has been going on. I received an email today and was told they are now making the necessary enquiries. I will wait and see what happens.  I can't understand why I haven't heard anything for 5 weeks. If it turns out I have a Pheo they can be dangerous especially when it is active.

Your Endo sounds very good. It could be that he does the operations for most people. I don't think they do many operations in my hospital especially for the adrenals so I could be going down the Heath if I need the op. They have to be very experienced doing this kind of operation.   

I think it'd ridiculous that you've not been given an appointment at least. Mine seems very good. I asked if there was a link with my shoulder pain but he said no. Surely there has to be some link as it's only befnn since this started. Keep nagging them merryl and they'll soon get fed up and do something for you.

It seems as if they told me I have an adrenal mass and left it at that. I can't get my head around to what's happening. I hope I will hear from the health board soon. They should have some answers. I will let you know when I hear anything.

 

Hi, I just had a phone call to say I have an appointment with the ENDO Dr on the 19th August . If I didn't send that email to the health board it probably would have been longer. It pays to complain.

How are you getting on and what is your next step?

That's good news and yes i think a lot if the time it's he who shouts loudest gets dealt with first. I had a call yesterday saying mt results are back from urine test and my consultant wants to see me Monday coming. The Secretary couldn't or wouldn't tell me the test results on the phone. So I guess I'll know more Monday.

It seems they have found something in the urine test, If they have perhaps the Dr can tell you what it is. Also he wants to see you urgently by the looks of it. I think you will be in safe hands with this Dr, he is on the ball. I had a letter this morning for my hospital appointment.

I have been passing water every 2 hrs been like this for over a month now. I had a urine test but no infection. The only thing I can think of is the mass is pressing on the bladder. My upper abdomen feels full and tight nearly everyday. It is very uncomfortable.  When you did the urine test did they tell you to keep it cold in the fridge or just leave it out? I read online that the urine should be kept in the fridge because if it is left out it will come back as normal even if it's not.  

Can you let me know what happens on Monday? Good luck.  

I will let you know what us said Monday. No they didn't tell me to keep it in the fridge but I had read onlime you had to eliminate certain foods from your diet but I wasn't told to. Nwhrn I questioned it with my consultant he said that's the old way when they used to test for a certain chemical but now they use a different test which isn't affected by diet. A lot of the info online is out of date.

I did some decorating yesterday and today I feel like I've been beaten up. Sore everywhere. My abdomen rib cage area started to feel sore towards the end yesterday. It's as if the 'thing' is moving around and things are getting inflamed.

A lot of my joints ache a lot.

Hi, did you get any news from the consultant?

Hi, I saw the consultant on Wednesday and she said it was an adenoma in my left adrenal. I knew it was in the left. They are going to keep an eye on it. I am doing  a 48 hr urine test starting on Monday.Hope this shows something and then they might have some more answers for me. I will have another CT scan 3 months time to see if it has grown. Still not on any meds although my blood pressure goes up quite high and sweating. Do you suffer from high blood pressure and sweating? 

Hope you are feeling okay.  

Hi Merryl, sorry late replying but I couldn't log in until now.

So you don't have a pheo?  My test came back negative so not a pheo.  He wants to scan me again in December, he doesn't like removing them so we will have to see.

I have been feeling lots of pins and needles in my hands and feet and shoulder pain lately.  I am stressed.  He says all these things are not related so now I'm wondering what is causing these other symptoms.

I don't suffer from high bp and sweating, my bp is and always has been on the low side and I very rarely sweat a lot, I'm a freezer.

Let me kow how it goes with your test.