Posted , 9 users are following.
Hi everyone. I have been very ill for almost 2 years and doctors have struggled to diagnose me correctly. I have been getting gradually worse and worse. Finally after an MRI scan it turns out I have a tumour in my adrenal gland and it has a self contained hemorrhage which shows that it is still growing. I need to find a specialist/surgeon in this field asap. Anywhere in the uk it does not matter, I just want the best dr I can find. Can anyone recommend someone that has ecperience in this? Private dr preferrably. Thanks
0 likes, 23 replies
sheltielife kristinathomas
Posted
Hi, If you go to the above link you will find a Mr. R. Hardy, who is based in Liverpool. I haven't seen him personally, but I believe he is a specialist in pheos. I went to see one in Bristol that was recommended to me, but she turned out to be useless. Her name was Karin Bradley. I had my op 7 weeks ago, after a long battle to get it done, but I am now on the road to recovery. Regards Julia
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sheltielife kristinathomas
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Katy_Jo kristinathomas
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kristinathomas Katy_Jo
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Was good reading your experiences with pheochromocytoma. It's some comfort knowing I'm not alone. I started noticing something was wrong beginning of 2012. I was having occasional episodes where I would feel breathless, have palpitations and go a little dizzy. I ignored them for months and blamed stress and all the exercise I was doing. By Christmas 2012 they were happening daily and thats when I first went to my doctor. My health took a sudden turn for the worst just a few weeks later. I had a very severe episode triggered by walking from my bed to my bathroom. My heart felt like it was trying to thump its way through my rib cage, I was gasping for air, I went deaf and got a high pitched ringing in my ear, I was trembling, my vision greyd out so I was blind for a few seconds, my legs gave way and eventually I vomited after which I started to feel better. This then happened again and then again over and over for hours resulting in a night in hospital. Unfortunately these episodes have been a daily occurance since Jan 2013. They can vary in severity and I can have anything from 2 - 35 episodes per day. I was misdiagnosed with a condition called Pots for over a year and was undergoing useless treatment which often made me feel worse. After doing my own research and experimenting I realised that during these episodes my blood pressure shoots up to as high as 240/110. After showing my findings to my cardiologist he submitted me for further tests. Blood tests revealed I too have a vit D deficiency, so thats interesting to know you do too. 24 hour urine tests showed high levels of cetacholamines in my system (sorry I don't know the numbers off the top of my head). Then after an MRI scan of my abdomin it was confirmed I have a tumour in my right adrenal gland, measuring at 6.3 by 5.6cm. I am currently undergoing more tests and scans to determine if there are more and also blood tests to see if there is a ginetic disorder called MEN which is usually a common cause of these. I should be having surgery very soon to have it removed but no date confirmed yet. I am seeing an endocrinologist called Tara Kearney and it looks like my surgery will be done by John Lynn ans his team. Hope this info is useful to you
Merryl kristinathomas
Posted
Did you have low blood pressure, high or both. I suffer from high and low and many symptoms. I have had tests for pheo quite a few times over the years, but the 24 hr urine tests always came back normal. I don't think I had other tests for this as far as I am aware of. What other tests did you have besides the urine test?
Did your operation go well?
pmailkeey Merryl
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Merryl pmailkeey
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Merryl pmailkeey
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maggie34838 Merryl
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Before Christmas I also had nausea and vomiting and ended up in A&E with suspected appendicitis. They did a CT scan and low and behold found masses on my adrenal glands.
Am currently in middle of multiple tests but looks like I have 2 Phoechromocytomas - even more rare to have 2. I feel vindicated that I was right in feeling it was more than AF but also scared at the prospect of having both my adrenal glands removed - a life changing operation I think.
Just wondered what had happened for you in the last 6mths.
Cheers Maggie
lea28569 maggie34838
Posted
Just came across thaïs site today and found all the post very interesting. Few months ago, July 2015 precisely, I had both adrenals removed due to Pheos in both of them. I had been unwell for a while but my GP didn't know what it was. I ended up collapsing one day after a week of palpitations, dizziness, blurred vision etc. my bp was over 240/142 and I was admitted to the hospital for a week after during which I had lots of test; the doctors didn't know what I had; they even asked i took drugs because whatever I had was having a severe impact on my heart and causing myocarditis, a thickening of the heart muscle. I was sent home with lots of blood pressure tablets and more. A week later I was back again; they thought I was having a heart attack. I stayed for a few days in hospital; saw lots of specialists. I the end they sentence home saying they just couldn't work out what I had. To cut a long story short I was referred to a heart specialist in London by my fathers friend; the specialist refers me to another colleague who within an hour of consultation said he thought he knew what I had. I heard the word pheocromocytoma for the first time. He sent me to another colleague, an endocrinologist, the following week for a diagnosis. After a couple of tests and scans it was found I had Pheos in both glands. Things went pretty fast after that. I had the op and here I am. An addissonian on hydrocortisone and fludrocortizone. It's been pretty lonely as I don't know anyone else who have this. I have been feeling pretty good and normal. Was online today because for the first time after the op I caught the flu and feeling pretty crap. Have doubled the med and have my emergency kit nearby.
Sorry for the lonnng post. Haven't written about this before.
Maggie, hope all goes well. Any questions feel free to ask.
maggie34838 lea28569
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lea28569 maggie34838
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Its lovely to hear from you. It's great to know that one is not alone, although I wish you didnt have to go through this. I was really scared, but I am fine now. You shouldn't worry too much and I am sure the surgeon knows what he is doing. One of my tumors was i think 6.2cm and the other one 4. They were pretty massive, so it was a rather difficult and long op. I was under for over 5 hours. I was out of hospital after a week. I had a keyhole surgery with 8 small incisions on my belly. I was back at work after six weeks off post surgery but only part time for a few weeks. For the last few months I have been pretty good; sometimes the only thing that make me realise that I am unwell is the medication. I have been worried about the cold winter and had a flu and a pneumo jab. Still I caught it. I have a toddler who brings everything home from the nursery.
I have doubled my dose so I feel a little better today. Still sneezing a lot but I will be fine I am sure. My emergency kit contains all the stuff i need for the injection. I havent had to inject myself yet, so keeping everything crossed as i absolutely hate needdles. I hope your appointment goes well. Take it easy and do not worry too much. There is light at the end of the tunnel for us. I live in Birmingham. Do you mind if I ask your age please.
Talk to you soon and keep me posted.
lea28569
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maggie34838 lea28569
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Great to hear from you again and that you're feeling a bit better.
What you wrote was all very reassuring, thank you. I'm quite a lot older than you - 69yrs; had just retired 2 years ago, worked as a Hospice Registered Nurse, when all this started for me, so have felt quite cheated that this was not how I planned to spend my retirement. I was very active - walking, gardening, playing Table tennis, dancing etc - all this slowed down considerably and stopped for long periods at a time! I have a son living in Guildford Uk and a daughter here in NZ, with 8 children whom she home schools. She lives in the N Island whereas I live in the South - I really want to try and visit her before my op but may not be possible.
My Endocrinologist told me it was highly likely to be genetic/familial because of being bilateral, so will need genetic testing. Were you tested? Must have been hard coping with a toddler after your op, but you sound a positive person. Take Care, cheers Maggie
lea28569 maggie34838
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I hope you had a good weekend. I feel much better. I am sorry to hear about your Pheos journey. Before you know it the op will be over and you will be less worried.
I hope to have the genetic testing done soon. I am due a 24h urine test and will be pressing the endocrinologist for the genetic test.
Are you on Facebook at all? I found a Pheos group this weekend and there are I think 3 or 3 people who have had both adrenals removed. You can ask to join and within 24 hours you will be connected to hundreds of people who have been through similar if not the same experience.
I think it will be reassuring for you. Let me know how you get on.
Good night
Merryl maggie34838
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Sorry i haven't replied but only just seen this message. I am still the same and just waiting for a scan to see if the adenoma has grown. I should have the scan in October/November. I saw my cardiologist just over 2 weeks ago and she told me to have another 24 hr urine test. The day I did the test I had an attack of high blood pressure, facial flushing, restless, headache etc. I have not had an attack before when I did the test, so I am waiting for the results now. Have you had the operation yet ? If so how are you feeling now.. By the way I am the same age as you.
Take care.
maggie34838 Merryl
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So, can't believe it's all behind me and the start of a new life.
Do keep in touch.
All the best Maggie
maggie34838 lea28569
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Well lots has happened for me since we were last in contact - hopefully you'll be able to read my reply to Merryl in this same
conversation - if not let me know and I'll fill you in.
Briefly, my op on March 3rd was a major one but am good now - better than I've been for a long time.
How are you? Hope all is well.
Cheers Maggie
crustyduh lea28569
Posted
Hi
I hope you dont mind me replying. I have all the symptoms of Phaeochromocytoma & am trying to get a diagnosis. It might not be this, but all symptoms fit. Been looking online for more info & found this site. I'm more or less house/sofa bound with my heart doing all sorts of weird stuff if I even exert myself a little. Hot rushes, really feeling the cold, shortness of breath & a gnawing pain under my left lowest rib area, sharp pains there too sometimes & lower abdomen sometimes too. Recently started getting pain on the right side too. Then there are the 2 to 3 day headaches. Feel pretty rough. I responded to you as I live just outside Leamington (Radford Semele) & we're in the same neck of the woods. How are you doing? Any advice for getting a swift diagnosis?
lea28569 crustyduh
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Hi
Thanks forgetting in touch. I am sorry to hear about all that you are going through. Sounds pretty horrible. Have you seen any specialist? You need to get your gp to refer you to QE in Birmingham. They have a team of endocrinologist who are specialists in this area . I only found out about them after my operation. They have been pretty good so far.
I am in earlswood, so if you want to talk let me know. We can exchange contacts.
Keep pushing your go for a referral if you haven't already. The condition is so rare that gps, well at least mine at the time, just don't take you seriously.
Take care
lea28569 maggie34838
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Hi Maggie,
For some unknown reason in missed your message until now. I often wondered why I haven't heard from you? Now i see you replied and i just missed the message somehow.
How are you? It sounds like you have been through a lot. I am so glad everything went well in the end and you are feeling great. I am going very well myself and fingers crossed I have had a flu free winter so far. I have taken up exercising and feel like I have almost got my old self back. I have found a local team of specialists who are following me with annual tests and check ups and there is a regular meeting with other patients ( I attended my first one two months ago) where they teach you about the condition, how to use the emergency kit etc. Well Didnt come across anyone with bilateral adrenalectomy, which makes me special I guess. Are you on hydro and fludrocortizone? How are you finding everyday life?
Again I am so so happy that everything went well for you! Maybe one of these days we can have a proper chat.
Take care
Chantal Lea.
crustyduh lea28569
Posted
Hi
thanks so much for getting in touch, I really appreciate it. Just had more bloods done, had an echocardiogram, (which was inconclusive) & been fitted with a 48hr monitor. Wed will have another monitor fitted and will have a to have a CT scan of my heart within the next couple of weeks.
Its impossible to push them, but if there's nothng wrong with my heart, then I will be pushing further for other tests & to see an endocrinologist. Its really tough trying to push for tests in areas GPs dont normally look into. On the one hand if the symptoms fit, it should be investigated, on the other, I'm aware that I may come across as neurotic, googling my symptoms & appearing convinced that this rare condition is what I have.
Thanks so much re QE Bham. I will see what happens with the heart monitoring and investigations, but if things dont get better, I'm pushing for other investigations. Today went ok, only a couple of episodes this morning.
So, erm, how on earth did you get your GP to take you seriously on investigating pheo?
Cheers
lea28569 crustyduh
Posted
Hi
Good to hear from you.
For some reasons doctor wait a long time before ev n suggesting the 24 h urine tests. My gp didn't take my symptoms seriously until it was too late and collapsed one evening. Even then the hospital thought it was all my heart and nothing else, even after I had mentioned pheos to them. It's only by going private that I discovered/ had the confirmation that I had Pheos.
It hard but you need to keep pressing th doctors. Find out what it would take for them to order a 24h urine test?
Please keep me posted on your progress. Again, let me know if you want to catch up. Sometimes it does help to talk to someone who has gone through similar ordeals.
Take care.
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