Adrenal tumors

I wish I could be sure of any certain symptoms. What are yours? The doctor, for some reason, is pretty hush hush about it all.

I know what you mean when you say hush hush about it. After I was diagnosed I was told I would be handed over to the endocrinologist team but 5 weeks after leaving the hospital I didn't hear a thing from anyone. I decided to send an email to my local health board to complain and within a couple of days I received a phone call to say I had an appointment at the hospital for 2 weeks later which is tomorrow. So I hope they can put a name to this mass. I also  phoned the endo's secretary but she was very vague as was my own Dr. Are you on any medication, I am not yet. My symptoms are stated above in my first message to you. You would know if you had symptoms. Why did your Dr investigate in the first place and how did they find your tumours??           

what did you find out?

I was told it is an adenoma but not sure myself. I am having the symptoms of a pheo. I am doing a 48 hr urine test at the moment so hope something shows up and sort it out once and for all. I am also having another CT scan in 3 months time to see if it has grown. I was told that an adenomas don't cause symptoms that's why I think it is something else because of the symptoms I am getting. Have you heard anymore?  

I will try this again. My last replay was erased???? I think they must have computer trouble.

Anyway, last had 48 hr test too........still  hush hush with findings....just said she needs to do ct ad ck once per yr. to see if too big.She said main symptoms minor  bloating some??? My Endo is not saying something?????

Keep me posted. Thank and good luck

I get the bloating every day which is really uncomfortable. When I was in the hospital last week the Dr asked me if I get bloating of the abdomen , I said yes so perhaps that's why she wants me to have the CT in 3 months time. I aso had a blood test in the hospital which needed to be sent straight to the lab, I haven't heard of this before.   

Another symptom is it raises norepinefrim sp which causes blood pressure being out olf control. Also it can cause flank pain.

Hi Merryl

I am getting the same symptoms as you waiting to have a blood test for my cortisole levels x

Hi Joyce, have you had a CT scan of your adrenals?

Hi Meryl I havent had a ct scan my doc said he didnt think I had adrenaline problems it has taken me ages to get another doc to agree to the cortisole test ,Its driving me mad all these symptoms and no answers x

Hi Meryl

​I am going to go private for a scan I am sick of waiting for docs to make there mind up seen the doc today and told him I wanted a refferral letter to have the scan . what do you think x

Hi joyce what symptoms go you get. Mine was found when I had a CT scan when the Dr was looking for something else. I wasn't feeling very well for a long time before they found it. I am waiting for a CT scan anytime now. I also had an MRI scan as well just over a year ago so the CT will see if it has grown or not. About 4/5 weeks ago I had 3 containers for urine tests again, to see if the mass is giving off hormones. The CT scan should show up the mass but sometimes they are very small. What did the Dr say today?      

Hi Meryl the doc still doesnt have any idea what is wrong with me my bloods and urine showed white cells he says it might be a kidney infection I am still waiting for him to write the letter for me to go priivate for the scans , I get awful sweats, spike in BP amd fast heart rate esppecially in the mornings and reallt horrid headaches blurred vision and trembling .. How long were you not well for Meryl before your diagnosis  x

Hi Joyce I haven't felt well for quite a while my spiking blood pressure was 200/110 and heart rate 132. I  was not put on any medication until 6 weeks ago after a mini stroke caused by my high blood pressure. I was sent to the stroke clinic and was put on 3 different meds so feel better at the moment. I found out I had a mass 19 months ago after the CT scan. They are watching it at the moment so still waiting for another CT scan. Hope you have the CT done soon. The mass is slow growing apparently. x          

Hi MerylI am sorry to hear you had a mini stroke .I was wondering did you get pain in your kidney erea in your back and chest pains by the way my doc said it wasnt worth having a private scan done cos he said I would get an ultra sound done soon and if nothing showed on that then get the ct one done,How do you ffeel now xx

I am fine at the moment the symptoms of stroke was very mild and CT of brain was normal. Like I said in my other post I get chest pain and pain in adrenal when I move or cough. It feels as if something is sticking out and getting it more often now.. Do you get high blood pressure?. .

Hi Meryl I do get high BP espeialy 1st thing in the morning and fast heart rate my bp seems to be out o control low and high spikes, I told the GP about the pain in my back in the kidney area .I am still waiting for the letter from the doc to go for a scan privately he said he wanted me to have a ultra sound scan 1st them see what happens from  there , thanks for keeping in touch Meryl its good to have someone to talk to about it take care xx

You are welcome to keep in touch because you won't find many on this site with the same thing  because it is very rare apparentlly. I phoned the endocrinologist secretary yesterday to find out if I have been booked in for the CT scan but she won't be back in until Monday. The endo told me I will have the scan in weeks not months but I have been waiting 3 months now. I need the scan to see if it has grown or not. Did your Dr give you a name for the tumour?     

Thanks Meryl

I havent been diagnosed with a tumor yet thats why I need the scan .sorry you are still waitng for yours ,I do hope when you get the scan al will be ok xx

Hi Joyce I forgot to mention that I suffer with low blood pressure as well as high, and passed out twice at different times while in the hospital. I have to be careful when I stand up. Are you still having an ultrasound?    

Hi Meryl I suffer with low BP as well and slow heart rate and nearly passing out at times I go for the ultra sound on Tuesday xx

 

Meryl meant to ask were in  the UK are you I live near Newcasrle x

HI joyce, I live in S Wales near Caerphilly. My Dr's secretary should be phoning me tomorrow to let me know about the CT scan. I had an  ultrasound about 3/4 years ago for something else but  the ultrasound scan didn't pick up any tumours then so don't know how long it's been there.I read that CT or MRI are better at picking them up. .Are you on any medication?       

Hi Meryl That is what I was afraid of the ultra sound not being enought to dectect anything but my GP said to have that done first wish I had just gounne for the CT now I have rheumatoid arthritis (had it since I was 27 and have had several back surgeries just recently so I take prednisole .Oramoph and paracetamol and 1 aspirin a day and diazapam  what meds do you take Meryl hope you get yur phone call tomorrow let me know x

Hi I am taking a BP tablet, statins, thyroxine and a tablet to stop my blood from clotting. I was only on thyroxine until I had the stroke. I should have been put on the BP tablet when they found the tumour and would have avoided the stroke. I had a phone call this morning from the secretary and she said there was a mix up because I had a blood test about 4/5 weeks ago which the Radiologist wanted before I had the scan. So she said I will be having the scan in due course. The CT scan will show if it has grown or not, If it has grown they may decide to take it out. I thought you would have been put on BP tablets  because of your high BP, x .  . .  

Oh no Meryl a mix up as usual with the NHS So how long will you have to wait now.No the gp said he couldt put me on BP meds because my BP didnt stay high to long it always goes down when I lie down I hope you get your scan soon and things are good . forgot to say I take statins as well . will let you know what comes from my ultra sound tomorrow not building my hopes up for a diagnosis from it to be honest

take care  Meryl xx

Hi Joyce, the secretary said i will get a letter in due course, so not sure when that will be. I would like to know the results of your ultrasound. I didn't realise you are having the scan tomorrow.  I hope you get good news and don't have a tumour in your adrenal. Good luck x      

Hi Meryl had the ultra sound said my kidneys looked good but couldnt see the adrenaline glands unless the were enlarged  will have to have a ct scan for that I think but the GP doesnt agree with me he doesnt seem to think its the adrenaline glands it was the gp that said to have the ultra sound ,take care Meryl x

Hi Joyce, so what is your next step. Have you had a 24 hr urine test to find out if your adrenal is giving off hormones. I had 3 of them over 3 weeks but don't know the results until I see the endocrinologist. I just seem to spend my time waiting for appointments and suffering too. I just spoke to my Dr on the phone and she is putting me on a different tablet because I am taking 2 a day but I am getting tingling all over my body with 2 tablets, but when I was told to just take one my BP went up again. So she is giving me another one that will lower my BP. So are you having a private CT scan or have you given up. x       

Hi Meryl No I havent been asked to do a 24 hour urine test. I havent made my mind up about the ct scan yet ,I have an appointment with a neurologist tonight .Thats what the GP wanted me to do.Hope you are feeling ok Meryl,I am the same just waiting for apointments all the time x

Hi Joyce how did you get on with the neurologist? I thought you would have seen an Endocrinologist. I am feeling okay but still waiting for a CT scan, The Endo said it will be weeks not months but here I am 3months later and no letter yet. Hope you are feeling okay. x.  

Hi Meryl cant believe you are still waiting for the scan thats a disgrace My doc still wont send me to see endo cos he still says he doesnt it is anything todo with my kidneys the nuero sent me for a brain and spine scan no results yet hope u r ok xx

Hi Joyce, Was wondering how you was geting on. Not good my end either. The secretary told me yesterday that the Radiographer said  I don't need another CT scan which they normally do once a year. I had a telephone appointment with my GP today and she wants me to make an appointment up the surgery because I need blood tests as well. I had a text message this morning to see the endocrinologist at the hospital on 6th April. I will ask him why can't I have a scan. I didn;'t expect to have an appointment so quick. I got in touch with Spire hospital for the cost of a CT scan and it is £499  Hope you have some news soon x     .