Had Addisons few years ago put on hydrocortisone.. Few years told it had gone.. Been very unwell lately all same symptoms of Adrenal Crisis.. Taken into hospital.. All fine iv fluids etc then as I'm Ready to leave ward Dr says need to stay think Addisons back.. It had been a hell hole so she let me go home but to ring GP first thing to get bloods done.. I did GP referred and ordered ambulance. After waiting 5 hours I A and E the first told 9 hour waiting time for my bed I was in excruciating pain. But knew I was ill.. Then another Dr saw me said its psychological go home so I went home alone in a taxi 30 miles away at 4am..next day GP rings had test back got Addisons again and hydrocortisone meds ready to collect. Good job my GP was on the ⚽ despair..
Go home its just psychological. We are A & E. G... - Thyroid UK
Go home its just psychological. We are A & E. GPS have no control here we say what goes
As I understand it, Addison's results from autoimmune damage to the adrenal glands, and as such it is a lifelong condition, not something that 'comes and goes'.
Were you originally diagnosed by an endocrinologist? Your GP seems to be taking your condition seriously, but at A&E your adrenal crises are not being treated. Have I understood you correctly?
The usual advice with serious conditions with the potential to become life-threatening is to wear a medical alert pendant or bracelet that shows relevant details, so that paramedics and A&E staff know what they are treating.
I was told by my consultant in 2015 the A.I I no longer had it its gone now ( exact words ) and was taken off hydrocortisone. I took that as true and that was my understanding not got it anymore.. But I've been unwell for a while but lately got worse and in the ambulance I said I'm exactly the same as when I had A.I he informed me it never goes Away. So yes I have got A.I however now I'm not in Adrenal crisis but have Adrenal fatigue. Appointment on 29th for Short S test and then to try get dosage correct. On A and E board they had notes kidneys?? I've never had anything wrong or kidneys been mentioned not sure if it relates to. A.I Not sure why that was on and it said in Adrenal crisis. Whilst sat waiting after telling them how ill I was and was supposed to be a bed for me.. I was being admitted but they said in A and E you will have to sit in the wheelchair another 9 hours to wait for bed. I hadn't eaten drunk slept for 8 days but when I saw the original Dr he told me they given me hydrocortisone.. Which is the correct treatment to start if in A. Crisis. and he'd sort meds etc wait for bed I knew I had no choice but to wait as I'd have been back the next day I was so ill I was ready to roll my jacket up and lay on the the floor I was in so much pain then the doctor who sent me home did his stuff.. He also said well you're really stressed and agitated.. Whilst my A. I has been in remission I have had 0 stress. I was stressed because the length of time how ill I was and was told a bed ready when I got there..And no one seems to be giving a damm that I'm ill. And been misinformed. And the people who have commented you like me, already know A. I stress and crisis or fatigue manifests it's self because of the condition. I have Ihad to literally crawl yesterday with my partner to the same A and E after GP referred to hospital who has severe crohns and the consultant keeps saying bloods are fine it's psychological finally after another week of nightmares he's been admitted for severe crohns iv fluids steroids again due to our GP not giving up. I was suffering badly while I waited with him and the same doctor passed by that had sent me home. And when I levelled out I just walked over and said hope you get help with your psychological problems. You can (can't remember if I put that in original post.) He said he has psychological problems too so he knows what it's like. And just passed him my box with my hydrocortisone prescription as I would be due to take one while at hospital and probably my cortisol levelled out. I said hope you get help for your psychological conditions but I've got my treatment for Adrenal Insufficiency / Addisons thankyou very much. And when I get my partner admitted and I'm home feeling better ill be reporting you for sending someone with a potentially fatal condition at 4.30am in a taxi saying back to an empty home. Me thinks you need some more training.. I turned and walked off and can still feel his embarrassment now. But yes I got his name and he always is an A and E Dr. I wonder how many other people he's shipped off home because he was clueless ill let u know the update. Thankyou I feel better now and getting it out has helped thanks for listening to and advice / comments
Definitely make the complaint, though it sounds as though your partner needs to make one too! What on earth is the health service coming to when doctors working in A&E, of all places, lack such basic knowledge of the conditions they're likely to meet? 😮
It gets worse.finally he's admitted and they know its crohns thinking and great..later that night had fluids iv and hydrocortisone iv. Nightmare ward again. But he was put in a quiet single room today so all seemed fine it's 40 mile round trip in a taxi and I'm too ill to go but would struggle visit tomorrow. Then I get a txt what do I do.. So the concise version after me relaxing he's safe being cared for by health professionals. They stopped the steroids as reaction.. But consultant will look again Monday.. No problem..his iv fluid ran out not changed it.. Not marked up for anymore. From 10am till 7pm every time asked he was being violently sick and non stop runs. The runs have been the worst part for years 24 / 7 bathroom hours at a time. But not one person has recorded it. Even though twice people came to clean the areas room.. Bathroom he'd been sick in.. His pain through the roof had been asking since 2pm.we'll get round to you. He's not a moaner and knows people are busy. But felt totally ignored. Now he's a 6 foot odd bloke and never gets upset but was sobbing I need to come home they're doing nothing here.. But he had to stay I insisted. So I rang the ward he was on and explained she says were doing handover if he needs anything to be done fluids etc. The Dr will sort it. What can he sort you don't know anything to tell him.. You've dumped the patient 8 people asked through the day are you loose yes and sick. I told her I'd give her 30 mins then ring back to find out if pain relief had been given and that iv fluids put back up. I consoled him and rang back half hour later. Spoke to the nurse who would be on duty that night. I explained again.. And she says do you want to speak to the Dr.. Surprise I did and he assured me he had listened to me and had just ordered fluids ASAP and pain relief.. Fluids arrived shortly then 1 codeine tablet.. He takes 1 to control the runs I told her ridiculous he's in Acute pain he needs something stronger or oramorph it's that painful.. She didn't know what ormorph was OMG. So told them to chase again to be told 1 Dr for the whole hospital.. Its true same when I was in last week and its a huge super hospital.. He promised he'd stay in and I said if u get pain relief and can sleep ill c you tomorrow.. Haven't heard so must have sorted it.. But before I finished the call the nurse said to hm. by your partner ringing up it has delayed things we were doing this that etc. Great fat lie done nothing as had no idea what the patients state was in but 5 minutes after my call he's got fluids pain killers and a Dr speaking to me on the phone. I'm disgusted and all the while my health getting worse when I'm trying to rest and recuperate I'm having to nurse him by phone enough now too many blunders in the last week only told basics of two same hospital.. But it's time for CQC to be investigating this hospitals running practice and lack of training of staff. So I will be putting everything together next week c /o Quality Care Commission who regulate hospitals care homes etc. Inspection must be imminent Hardly any staff follow NMC code of conduct. I'm not being complicit and not saying anything that will affect other patients in the future
Are you sure it was Addison's as it's an auto immune condition that can't "come & go" it's a life time life threatening condition? Could it be secondary adrenal insufficiency where it can improve sometimes? Do you know what your cortisol levels are? Have you had a Short Synacthen test to confirm it is? if you do have Adrenal insufficiency then you need to be Red Flagged with your local ambulance service so they know to treat you with an emergency Hydrocortisone injection. You also need to wear a medical alert bracelet at all times & carry information on Adrenal insufficiency & what to do in a crisis.
I was told by my consultant in 2015 the A.I I no longer had it its gone now ( exact words ) and was taken off hydrocortisone. I took that as true and that was my understanding not got it anymore.. But I've been unwell for a while but lately got worse and in the ambulance I said I'm exactly the same as when I had A.I he informed me it never goes Away. So yes I have got A.I however now I'm not in Adrenal crisis but have Adrenal fatigue. Appointment on 29th for Short S test and then to try get dosage correct. On A and E board they had notes kidneys?? I've never had anything wrong or kidneys been mentioned not sure if it relates to. A.I Not sure why that was on and it said in Adrenal crisis. Whilst sat waiting after telling them how ill I was and was supposed to be a bed for me.. I was being admitted but they said in A and E you will have to sit in the wheelchair another 9 hours to wait for bed. I hadn't eaten drunk slept for 8 days but when I saw the original Dr he told me they given me hydrocortisone.. Which is the correct treatment to start if in A. Crisis. and he'd sort meds etc wait for bed I knew I had no choice but to wait as I'd have been back the next day I was so ill I was ready to roll my jacket up and lay on the the floor I was in so much pain then the doctor who sent me home did his stuff.. He also said well you're really stressed and agitated.. Whilst my A. I has been in remission I have had 0 stress. I was stressed because the length of time how ill I was and was told a bed ready when I got there..And no one seems to be giving a damm that I'm ill. And been misinformed. And the people who have commented you like me, already know A. I stress and crisis or fatigue manifests it's self because of the condition. I have Ihad to literally crawl yesterday with my partner to the same A and E after GP referred to hospital who has severe crohns and the consultant keeps saying bloods are fine it's psychological finally after another week of nightmares he's been admitted for severe crohns iv fluids steroids again due to our GP not giving up. I was suffering badly while I waited with him and the same doctor passed by that had sent me home. And when I levelled out I just walked over and said hope you get help with your psychological problems. You can (can't remember if I put that in original post.) He said he has psychological problems too so he knows what it's like. And just passed him my box with my hydrocortisone prescription as I would be due to take one while at hospital and probably my cortisol levelled out. I said hope you get help for your psychological conditions but I've got my treatment for Adrenal Insufficiency / Addisons thankyou very much. And when I get my partner admitted and I'm home feeling better ill be reporting you for sending someone with a potentially fatal condition at 4.30am in a taxi saying back to an empty home. Me thinks you need some more training.. I turned and walked off and can still feel his embarrassment now. But yes I got his name and he always is an A and E Dr. I wonder how many other people he's shipped off home because he was clueless ill let u know the update. Thankyou I feel better now and getting it out has helped thanks for listening to and advice / comments
Good advice from Hillwoman and PaulineS.
What that doctor said to you at A&E is in my mind completely unnacceptable to a poorly and worried patient. I know they are under a lot of work-related stress but victim blaming like that and accusing you of "it's all in your mind, dearie" is shocking. Has a compassionate bedside manner completely gone out of the window?
I would put in a formal complaint to the hospital's PALS department.
I was told by my consultant in 2015 the A.I I no longer had it its gone now ( exact words ) and was taken off hydrocortisone. I took that as true and that was my understanding not got it anymore.. But I've been unwell for a while but lately got worse and in the ambulance I said I'm exactly the same as when I had A.I he informed me it never goes Away. So yes I have got A.I however now I'm not in Adrenal crisis but have Adrenal fatigue. Appointment on 29th for Short S test and then to try get dosage correct. On A and E board they had notes kidneys?? I've never had anything wrong or kidneys been mentioned not sure if it relates to. A.I Not sure why that was on and it said in Adrenal crisis. Whilst sat waiting after telling them how ill I was and was supposed to be a bed for me.. I was being admitted but they said in A and E you will have to sit in the wheelchair another 9 hours to wait for bed. I hadn't eaten drunk slept for 8 days but when I saw the original Dr he told me they given me hydrocortisone.. Which is the correct treatment to start if in A. Crisis. and he'd sort meds etc wait for bed I knew I had no choice but to wait as I'd have been back the next day I was so ill I was ready to roll my jacket up and lay on the the floor I was in so much pain then the doctor who sent me home did his stuff.. He also said well you're really stressed and agitated.. Whilst my A. I has been in remission I have had 0 stress. I was stressed because the length of time how ill I was and was told a bed ready when I got there..And no one seems to be giving a damm that I'm ill. And been misinformed. And the people who have commented you like me, already know A. I stress and crisis or fatigue manifests it's self because of the condition. I have Ihad to literally crawl yesterday with my partner to the same A and E after GP referred to hospital who has severe crohns and the consultant keeps saying bloods are fine it's psychological finally after another week of nightmares he's been admitted for severe crohns iv fluids steroids again due to our GP not giving up. I was suffering badly while I waited with him and the same doctor passed by that had sent me home. And when I levelled out I just walked over and said hope you get help with your psychological problems. You can (can't remember if I put that in original post.) He said he has psychological problems too so he knows what it's like. And just passed him my box with my hydrocortisone prescription as I would be due to take one while at hospital and probably my cortisol levelled out. I said hope you get help for your psychological conditions but I've got my treatment for Adrenal Insufficiency / Addisons thankyou very much. And when I get my partner admitted and I'm home feeling better ill be reporting you for sending someone with a potentially fatal condition at 4.30am in a taxi saying back to an empty home. Me thinks you need some more training.. I turned and walked off and can still feel his embarrassment now. But yes I got his name and he always is an A and E Dr. I wonder how many other people he's shipped off home because he was clueless ill let u know the update. Thankyou I feel better now and getting it out has helped thanks for listening to and advice / comments
If you have Addison's then you would be on hydrocortisone for life
Perhaps you had adrenal exhaustion?
Are you hypothyroid/Hashimoto's and on Levothyroxine? Or trying to get diagnosed
See you have Crohn's.
Low vitamin levels are extremely common with Crohn's and Hashimoto's
Important to test vitamin D, folate, B12 and ferritin
I have A. I the consultant gave wrong info I should have remained on them I don't have crohns my partner does I have ibs diverticulitis and 4 dislodged discs in my back and really bad kee pain just recently had treatment for back not worked injections now after 3 years of agony the back pain the knee pain. Stomach problems and general feeling like death warmed and up and still having to go to work it appears that the all the pains et are down to the A. I.. Im not in crisis now but have A Fatigue. Short S test 29 Nov to ascertain dosage and if I still have it blimey
Are you on any thyroid hormone - T4 or T3? The adrenals and thyroid are interlinked. I used to get mega awful adrenal crises. So bad that I insisted on testing for Addisons and I even bought hydrocortisone myself from abroad. But once I was on adequate thyroid hormone replacement the adrenal crises stopped. I did testing of vitamin D, folate, B12 and ferritin, and made sure they were all optimal. Taking selenium supplements helps the adrenals as it assists thyroid hormone to get to the right place. You've had horrendous hospital experiences .. I can relate to that.
I'm on hydrocortisone again but should have been on for the last 3 years so I've been running on fumes as told Addisons had gone so didn't know why I was so unwell got short. S test this Thursday and endrocoligist appointment soon to look into other stuff ie thyroids etc. At least I now now if I get really bd I know what point I need to go back to hospital I sick constantly as I the steroids won't be in my system at moment A. Crisis over and adrenal fatigue at the moment minute no idea how long this will last. Hopefully one steroids have started working. Worst thing is I'm having to lie to my partner saying I'm OK to ensure he stays in hospital to get sorted if I told him how bad I am he would get a taxi home to look after me. Anyone know ho long the a. fatigue lasts at my wits end but I'm very unwell but not in need of hospitalisation