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Phaeochromocytoma Specialist

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kristinathomas
kristinathomas

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

23 Replies

  • sheltielife
    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

    Patient Moderator Note: I have removed an URL (a link) from this reply as it was unsuitable for inclusion within these forums. If any user is interested in this removed information they should contact the author via the Private Messaging system requesting such. Thank you for your cooperation.

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  • sheltielife
    sheltielife kristinathomas

    Posted

    HI, Sorry, I didn't know that you couldn't provide links in the forum.  So,  if you do wish to know how the person is please contact me by Private message as suggested.
  • Katy_Jo
    Katy_Jo kristinathomas

    Posted

    I am currently being tested for phaeochromocytoma also. I have been having these symptoms for the past 4 years and while I can take medication to help stop them, they keep happening. The symptoms that discribe phaeochromocytoma match mine to the "T". The thing is my blood test showed that my adrenal glads are working correctly. Did yours? I still have a 24 hour urine test to do yet, and depending on that they will do more looking for the tumor. I know that the tumors can not always be in the adrenal glands but can go into the lungs as well as the intestinal track. I am so tired of dealing with these episodes where my body literally feels like it is out of control and have these symptoms at different times. I usually have them first thing in the morning, but not always...I could be watching a tv show and some is dying on it and I will have one. I can get startled and it will trigger one. Sometimes when I have a bowel movement it will trigger one. I just never know what is going to trigger it, but it is not my heart. I am going to an endocrologist and she already did some tests on me and other than a few things being high or low, everything looked pretty good. I do know that I am very low on vitamin D....is this something you have found with yourself too? Whatever an "Anion Gap" is it whoed it as being high at 12. I just wondered what took you to the doctor in the first place, and what your symptoms are? What are they going to do from here on for you? From what my doctor told me these tumors are very small and hard to find, so you were fortunate they were able to find yours. I go to the UAMS in Little Rock, AR, to Dr Irina Lendel. She is very good and is also a professor who teaches others about these things. It is a learning hospital, and they are very up to date in all their procedures. Other than her, I do not know of anyone who handles this type of thing, and I an not sure if she would be the one to operate, but she would be able to refer you to the best they have at the UAMS, in Little Rock. I have been seeing her for 2 years now, and also see her for my diabetes. She is French Canadian and her husband is also a doctor...a excellent cardiologist and both of them are kind considerate, and caring doctors who want to get to the bottom of your illness or problems. Sincere wishes to finding someone to help you...K
    • kristinathomas
      kristinathomas Katy_Jo

      Posted

      Hi Katy

      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 smile

    • Merryl
      Merryl kristinathomas

      Posted

      Hi, I know this is old post but I thought I would  try anyway. I had a CT scan just over a month ago and it showed a mass in my adrenal gland.  I had the scan done  for something else and it showed the mass. I am also low in vit D so on treatment for that at the moment. I have to wait 2 months to see an endocrinologist I have not seen one yet and not on any medication. Could you tell me what medication was you taking before the operation.

      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
      pmailkeey Merryl

      Posted

      24 hr urine metadrenaline test is often the first step. Next step is a fasting blood sample (Lavender blood collection tube) for metadrenalines. I have high BP - now on pills. Just today doc agrees with me that I'm diabetic now also. They claim the phaeo is 'rare' - I'm getting the feeling that's going to be more likely due to failing to diagnose correctly! MRI scan is preferred over CT for finding these. If you have a phaeo, it needs to be surgically removed.
    • Merryl
      Merryl pmailkeey

      Posted

      Hi, I saw the Dr at the hospital last week and she thinks it is an adenoma. She wants me to have a CT scan 3 months time to see if it has grown. I also had blood taken in the hospital and it had to be sent straight to the Lab, but don't know what this is for. I think the colour on the top of the tube was a lavender colour, but I did not fast for this.
    • Merryl
      Merryl pmailkeey

      Posted

      Forgot to say, I have just finished a 48 hour urine test  so now waiting the results of that and the blood test. Have you had an arenal tumour?
    • maggie34838
      maggie34838 Merryl

      Posted

      Hi Merryl, I know your post is 6mths old but really interested in how you are getting on. I live in NZ and for 2 yrs have been diagnosed with Atrial Fibrillation - was getting hugely swinging BP, terrible headaches, pounding heart etc I somehow thought my symptoms were far more severe than others with AF but my doctors ignored my descriptions and put them down to anxiety.

      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
      lea28569 maggie34838

      Posted

      Hi

      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
      maggie34838 lea28569

      Posted

      Thanks so much for replying, especially when you're not feeling so well. Hope you're feeling bit better now - what is in your emergency kit? Do you know how big your Pheos were? Mine are 6cm diameter on the right and 2cm on the left, so my Endocrinologist said they may be able to take the smaller one out laparoscopically but will probably have to cut the other one out. How did they remove yours? I must admit to feeling quite scared so really good to hear from someone who had it and came through! You had quite a journey getting to your diagnosis, did you recover quickly from your op? I have my first appointment with the surgeon on Friday, things seem to have moved really quickly since they finally decided they were pheos. Hope you don't mind all these questions - I think we're pretty rare so good to share with you, even if you are on the other side of the world!! By the way I was born In Sheffield but emigrated in 1972, where do you live? Get well soon. Cheers Maggie

    • lea28569
      lea28569 maggie34838

      Posted

      Hi Maggie,

      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
      lea28569

      Posted

       I forgot to say I am due a 24h urine test and will be travelling to London in february to see the specialist.

       

    • maggie34838
      maggie34838 lea28569

      Posted

      Hi Lea,

      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
      lea28569 maggie34838

      Posted

      Hi Maggie

      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
      Merryl maggie34838

      Posted

      Hi Maggie,

      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
      maggie34838 Merryl

      Posted

      Hi Merryl, Good to hear from you, sorry you're still having problems - what a long process! I had a Bilateral Adrenalectomy on March 3rd - the pheos had grown to 8cm and 4cm and had adhered to my liver and kidneys. The op took 8hrs because I haemorrhaged after they removed my spleen as well - they couldn't stop it bleeding so had to go back into theatre. I was in an induced coma for 24hrs then in ICU for 4 days. However...... since then I have recovered remarkably quickly and feel better than I have for the past 3years - so all good now! I'm just getting used to adjusting my steroid medications and also avoiding infections, but have been walking a lot - did 11km last week and playing table tennis. Have a spectacular scar from one side of my abdomen to the other but all healed now.

      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
      maggie34838 lea28569

      Posted

      Hi there,

      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
      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
      lea28569 crustyduh

      Posted

      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
      lea28569 maggie34838

      Posted

      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
      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
      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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