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Addison's Disease Message Board


Addison's Disease Board Index


I have been very poorly over the last 5 months, i had an op that went wrong in which i died and they had to resuscitate me they rushed me to theater where they found over 1.5L of blood in my stomach but they never found where the blood had come from since then i have been so ill..


I asked my endro consultant to refer me to kings hospital under a very good endro professor. As i am under kings anyway for my other conditions, ( to name just a few i have Primary Addison's, Anti-cardiopolin & myoclonus syndrome & B12 pernicious anemia with Nero problems as i was left to long before they found it in time since the op they found i am now in the menopause at the young age of 39.


My BP and pulse was thru the roof for over 6wks or more this seems t

o have stablised since putting me on BP tablets so now i am on BP tablets to lower it & bp tablets to raise my BP. this seems so odd to me but it is working for now which is all that matters )..
I am being referred to the endro consultant at kings for my Addison's disease but this may take a few months before i get my appointment he said.


This does concern me, The thing is i dont know how serious it is with my 24hr cortisol urine levels being 2358 at 2.71 L output. also my MY GFR calculated abbreviated MDRD reading is 60 mL/min/1.73m2 what ever this means i have no clue.. I was wondering if anyone on this site knows what this may mean?....

All i know is im scared with my life in these peoples hands, For gods sake my endro consultant that is dealing with my addison's for the last 2 half years doesn't even know what an emergency injection kit was when i asked him last week am i being silly & over reacting or should i be concerned with my recent test results ???

PLEASE HELP IM SO UNWELL RIGHT NOW AND MY LOCAL GP AND CONSULTANT DONT SEEM TO UNDERSTAND or know anything about addisons disease at all..
[QUOTE=ozzyie135;4806160]I have been very poorly over the last 5 months, i had an op that went wrong in which i died and they had to resuscitate me they rushed me to theater where they found over 1.5L of blood in my stomach but they never found where the blood had come from since then i have been so ill..


I asked my endro consultant to refer me to kings hospital under a very good endro professor. As i am under kings anyway for my other conditions, ( to name just a few i have Primary Addison's, Anti-cardiopolin & myoclonus syndrome & B12 pernicious anemia with Nero problems as i was left to long before they found it in time since the op they found i am now in the menopause at the young age of 39.


My BP and pulse was thru the roof for over 6wks or more this seems t

o have stablised since putting me on BP tablets so now i am on BP tablets to lower it & bp tablets to raise my BP. this seems so odd to me but it is working for now which is all that matters )..
I am being referred to the endro consultant at kings for my Addison's disease but this may take a few months before i get my appointment he said.


This does concern me, The thing is i dont know how serious it is with my 24hr cortisol urine levels being 2358 at 2.71 L output. also my MY GFR calculated abbreviated MDRD reading is 60 mL/min/1.73m2 what ever this means i have no clue.. I was wondering if anyone on this site knows what this may mean?....

All i know is im scared with my life in these peoples hands, For gods sake my endro consultant that is dealing with my addison's for the last 2 half years doesn't even know what an emergency injection kit was when i asked him last week am i being silly & over reacting or should i be concerned with my recent test results ???

PLEASE HELP IM SO UNWELL RIGHT NOW AND MY LOCAL GP AND CONSULTANT DONT SEEM TO UNDERSTAND or know anything about addisons disease at all..[/QUOTE]
Firstly on a medical and practical level, I don't have the answers you are looking for. I just wanted to give you my love and support. As you are in the UK, I feel I am more able to identify with your problems with the medical profession and no - it is not you, I have had the same lack of professionalism from my GP, so I do understand how scared you are that you feel that the medical profession do not know what they are doing and that you have nowhere else to turn. I have found, along with the medical treatments, that complimentary therapies do help. I feel that when I think a lot of negative thoughts especially when I project these into the past and the future, my well being hits an all time low. I am not sure whether you feel fit enough to try some gentle yoga at a class or some Tai-chi, massages have been recommended by others, I prefer having healing which calms and balances my whole body, swimming which is a great help and meditation and relaxation tapes. The more I can get my mind off my discomfort and fear and identify with good feelings in my body, the more they grow, as is the same with bad feelings. I wish you well in finding the answers to your medical dilemmas. Have you thought about getting an independent medical opinion or expressing your concerns impersonally and unemotionally to the medics you are dealing with? Sometimes, if we can express what we really feel without emotion or blame, others respond surprisingly well. Good luck and I hope to hear how you get on.
[QUOTE=ozzyie135;4806160]I have been very poorly over the last 5 months, i had an op that went wrong in which i died and they had to resuscitate me they rushed me to theater where they found over 1.5L of blood in my stomach but they never found where the blood had come from since then i have been so ill..


I asked my endro consultant to refer me to kings hospital under a very good endro professor. As i am under kings anyway for my other conditions, ( to name just a few i have Primary Addison's, Anti-cardiopolin & myoclonus syndrome & B12 pernicious anemia with Nero problems as i was left to long before they found it in time since the op they found i am now in the menopause at the young age of 39.


My BP and pulse was thru the roof for over 6wks or more this seems t

o have stablised since putting me on BP tablets so now i am on BP tablets to lower it & bp tablets to raise my BP. this seems so odd to me but it is working for now which is all that matters )..
I am being referred to the endro consultant at kings for my Addison's disease but this may take a few months before i get my appointment he said.


This does concern me, The thing is i dont know how serious it is with my 24hr cortisol urine levels being 2358 at 2.71 L output. also my MY GFR calculated abbreviated MDRD reading is 60 mL/min/1.73m2 what ever this means i have no clue.. I was wondering if anyone on this site knows what this may mean?....

All i know is im scared with my life in these peoples hands, For gods sake my endro consultant that is dealing with my addison's for the last 2 half years doesn't even know what an emergency injection kit was when i asked him last week am i being silly & over reacting or should i be concerned with my recent test results ???

PLEASE HELP IM SO UNWELL RIGHT NOW AND MY LOCAL GP AND CONSULTANT DONT SEEM TO UNDERSTAND or know anything about addisons disease at all..[/QUOTE]
thank you for repling to my cry of help, the thing is i have primery addisons, my cortislo steriod levels were normally extremely low vertually non exictent which is why i am so scared now with my steriod levels not just being high but being extremely high for me and my condition which doesnt make sence now... my condion is completely the reverse of what it use to be.
Since April just gone when i nearlly lost my life after a small routine operation went wrong and i then had to have major surgery to stop a massive internal bleed needing a 5pint blood transfusion after (im lucky to be alive now but TBH i wish they never revived me with how i feel at this time).. i feel such a burden to everyone relying on my parents to just help me through the easy of every day to day tasks that i use to take for granted. the pain is herendous the not knowing what is going wrong with me is even worse... like you said cushings is the flip side of what i have or should say had with my
addisons.

I use to have low BP syncope ect ect. now i have extemely high BP with tacicardia,low pottassium VIT D deficent high colestral ect , I am now B12 difinent with nuro problems, in the menapause at only 39, i have put on nearlly 3 stone since the operation in april and its not that im eating to much either, my steriod level IE cortiso is now 2238 where it us to be zero'd my fits and sezures are so much worse now (this is due to mycolonus syndrome and not epilepsy) the pain in herendouse, just been told need operation on my knee and there is something wrong with my lower back dont know to what extent until i see my consultant. the headaches are herendous where i never had headaches before, my memory is awfull this fatigue is not normal no matter how much sleep to have i also seem to wake up around 4in the morning all the time and i hate the nightmares i am getting now


This is why i am so scared and worried because i am completely the oppersite to what i was before and what addisons symptoms are> the doctotor examined me in london the other week and in his letterr it states i look slightly pelthoric and cushingoid, can i have cushings with addisons i have no idea?
(I thought you couldnt).. I also have a goite he said not looked any of this up properly as yet am to scared too

I am struggling so so and now i am wishing each day will end because having this pain every single day not only when i am awake but even while i am asleeping i dream and have nightmares when i awake the pain is there in the same place as it was in my dreams.

it feels like my body is trying to destoy itself and there is nothing i can do to stop it or make it better. i am getting to the point that i no longer what to carry on or live but the only thing that makes me do so are my to young boys but i am beginning to wonder if they are better off without me as im not even being a mum to them properly because my illness is stoppping me.. i need it to stop there is only so much a human being can take and im at my limit now. everyday is a battle and im tiered of this i dread opening my eyes each day thinking how will i mange to get through this day without my boys knowing i cant cope......

Sorry to be so boring and (i cant think of the right word for what i want to say) dull and down (nope that still not the right word i am looking for my brain has stopped working Grrr) i mean "NEGATIVE" ... I know there are more ppl in the world that is suffering worse than me but i at a point after nearly 3 years and i dont know how much more i can take each day..
But i do thank everyone that has commented on this website to me at some point in time over the last 3 yrs you have all been gardian angles to me.
THANKYOU ALL SO MUCH its only speaking on here thats got me this far, i send my love and thoughts to you all...
Huggs Cheryl xXx





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