Anyone Got Low Cortisol/Addisons Disease ?
barrowgirl
Posts: 1,944 Forum Member
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Hi , last year I was really ill for months and months.I couldn't leave the house and thought it must be M.E , or M/S . so I was sent for an MRI , it's taken all this time for them to send me to a Neuro then an Endo who found I have low Cortisol which means I am being tested next month for the very likely cause - Addisons Disease .I had never heard of this .It can cause adrenal crises/failure ,and I have since found out my friend who relied on steroids to help her with this , is now dying from it . I didn't even know she had this , she just called it a brain disease she had .Turns out it was Addisons.
Has anyone else got this ? Know anyone with it ? Have steroids helped ? how do you cope on them ? all replies appreciated .
thanks.
Has anyone else got this ? Know anyone with it ? Have steroids helped ? how do you cope on them ? all replies appreciated .
thanks.
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I know you should wear a necklace, bracelet or whatever incase you have an attack. A horrible thing - there's a lot of info on the net - look at the UK sites, preferably.
I have really bad pernicious anaemia & a small cyst in my right kidney - hence me being monitored.
Take care of yourself & never be afraid to question the doctor.:) I think doctors are more aware of it these days as it can be fatal if undiagnosed - but you're being tested so you can be treated and be fine with suitable treatment.:)
Am happy to answer any questions you have.
Dawsons , I have the added complication of the same condition as my pal who is dying , we are both 57 , we both have stoma's .The steroids she was put on worsened her already weakened interstinal condition and to phase it as she did " they chomped away at her weakened insides " .
Of course I have no idea if they'll do that to me .I am desperately concerned about the side effects of massive weight gain they are renowned to make you have( steroids ) , and the other side effects of them ? I see someone else on the NHS patients site has just lost a sister to Addisons aged 45 , yet there are people like you who can live with it quite happily ? am confused now .How old are you ? how long have you been on steroids ? Do you keep going for readings for ever Utopian in case your cortisol drops still further ? mine is 150 , but the minimum is 240 so I've been told ?Dawsons, do you carry emergency injections ? they no longer work for my pal .
many thanks
B.
Hi barrow girl - I usually go every six months. That's to check all my PA levels as well. They did change my antidepressants back last year from Dolsulepin to Lustral & I thought I was going to crack up - I kept shaking, passing out - once I swear I fractured my nose as hubby came home and found me in bed but a pool of blood downstairs. Anyhow, somehow I managed to get to the Doctor who originally suggested I'm monitored and he'd never seen me so bad - and did some tests in the surgery & sent me to hospital for blood tests - they read ok but we're borderline - hence the monitoring. Obviously he's told me to get to hospital ASAP if I keep passing out/ shaking - and tell them to test my cortisol.
I know it's awful to worry but keep in contact with your Doctor/ Nurse - I'm 55 and I really don't worry about questioning my fears with the Doc anymore - it's your body/ fear - explain how worried you are and ask anything. If one medication doesn't work keep going back - it's your body & your feelings.
Please don't feel alone - I'm sure Dawson will only too pleased to answer your queries too - talking really does help.:) X
B.x
Aww, good luck barrow - remember, you've been sent for tests and there's great modern medication out there. You can PM if you ever want to btw - Dolsulepin don't really cure me completely, but I can't cope with the newer ADs. The mornings are always shaky for me - I hate it, plus I can't have HRT for menopause as my Mum died of breast cancer.
Still, we have to keep positive -
I'll try and answer all your questions - if I miss one let me know.
In addition to Addison's I already had Indeterminate Colitis and so was already on various doses of steroids (prednisolone) and methotrexate for 4 years before Addisons was diagnosed. I've not found that the steroids they put me on for Addisons (hydrocortisone) adversely affected my colitis as it's a much lower dose than prednisolone. I underwent an ileostomy just before Christmas so also have a stoma but this hasn't affected or been affected by my Addisons. I'm not any way medically qualified but I always understood that if you took the correct levels of medication for Addisons that you could live a full and normal life so not sure what other complications your friend has that may cause her to be dying.
I'm 38, and have been on hydrocortisone steroids for 18 months now, but as mentioned above was on prednisolone on and off for 5 years. I've not had any weight gain from the hydrocortisone which is the drug I'm on for Addisons. The dose I'm on (15mg) is sufficient to replace what I'm missing, you only put on weight if you take more than your body needs. Your consultant/doctors would advise you on what your maintaining dose would be. I don't go for tests to check my cortisol levels but I see my consultant once a year (although this is as much for my 3rd immune condition as for my Addisons). My cortisol level was at 50 when I was diagnosed so I guess there's no point re-measuring it as it's already very low.
Yes I have an emergency injection kit which is 100ml of hydrocortisone, I've only had to use it once and it did what it needed to do. Also worth me pointing out that undergoing the major surgery meant that I needed higher levels of hydrocortisone to get my body through it but that was all managed fine by the surgical team.
Apologies for the long post - lots of information to pass on. You're obviously seeing one side of the condition, I can only tell you my experience which is that currently everything is pretty normal for me. I can get tired more easily than a "normal" person, but apart from that (and remembering to take the tablets) I lead a normal life.
Happy to answer more questions but I hope all goes well for you.
Hi, Dawson - that's interesting info you've given. I can sleep for a day out of the blue and feel faint etc - which confuses my hubby and myself really. I frequently vomit after certain foods ( no I don't make myself sick) and I know my Maternal Grandfather, young cousin & my first cousin had stomach cancer & vitiligo respectively.
Ina e t told the docs this tho'.
Thanks for the info - I wish you well. X
Thank you Dawson's - you don't know how relieved I am to hear your very differing account than my friends .And you too have a stoma !! OMG , what were the chances of that !! I feel much more positive now , as I had thought and read , that there were more people living with Addisons than dying with it .So , it's very much controllable with the correct dose - this is what my doc told me, but I thought he was just trying to soften the blow
I will digest your info , and now note your levels etc so I've a better idea of where I am etc .I think my friend has been very unlucky as her weight may be part of her problem she is very very underweight ,and has bone problems too .Maybe her contributing factors plus her bodys rejection ? of the steroids maybe ? have done the damage .I am unsure and it's nothing I can ask as she very ill now.
Thanks for your time.I will post again once I have my head round it.
Glitterbug , that was useful thanks .The weight loss seems to be a common theme , and the fake tan look though I don't think I have that just yet . I can't have alcohol anyway but good tip .Utop , looks like Dawsons got lots of good experience we can both draw on !!
cheers
B.x
Sounds pretty awful what you're going through as well. Because Addisons can't be diagnosed until the adrenal gland is pretty much useless I experienced weird symptoms for at least a couple of years before diagnosis, so I understand what it's like to know something is wrong but not know what it is. In my case I always put it down to the other conditions I have, but it turned out to be something else!
As for the vomiting, one of the effects of colitis I used to get was vomiting, which is unusual for colitis so I would often get funny looks from doctors as if I was making myself sick! So my sympathies there.
Barrowgirl - hope all goes as well as it can and absolutely take the time to digest all information you can get. If you are diagnosed with it then try and find a consultant who knows about it. I'm lucky that I live near a big hospital and so I have knowledgeable doctors and a specialist nurse I can talk to anytime. But my GP (understandably) doesn't know much about it, so it's worth seeing if there are any specialists in your area.
I have come off Topirimate as I think it was making my brain fog much worse.
Back to the G/P now to see where we go next .Prob the neuro again as the MRI they did wasn't the one with dye .I think that shows more .
cheers
B.x