Just diagnosed with Addisons

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Hi everyone, I have just yesterday been diagnosed with Addisons disease and I'm pretty damn terrified. I'm not sure what to think or feel and all i see is horror stories about this disease. My doctor and nurse has reasured me I can just go back to normal after I recieve my meds but I'm scared.

I'm currently waiting for the hospital to call so i can go in for further tests and treatment, and I just don't know what to expect. I just feel so scared sad

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  • Posted

    Trust me you will feel so much better once you get on the right meds
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    • Posted

      Thank you. It's all just so unexpected, I thought I had chronic fatigue syndrome for months. I keep having panic attacks because I'm so scared. 

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  • Posted

    It's obviously daunting getting a diagnosis of Addison's but once you start treatment and you feel the difference it makes to you it will be easier. You learn very quickly by how you feel and  recognise when your medication might not be quite enough or too much. When in the right balance you should be able to feel well and enjoy life. It is a manageable condition.

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  • Posted

    shabbychi

    Assuming you have no other complications, there is no need to be terrified. I have lived a perfectly normal life for 52 years with this condition.

    There are 4 important things to remember:

    1. Get into a good habit with taking your daily medicine

    2. If you have an infection i.e. a cold or something more serious double or treble your daily dose and keep it at that level until the infection has gone

    3. Always mention that you have Addisons to any Doctor, Nurse, Dentist etc

    4. Always carry a Blue Card Steriod Treatment card with you 

    Yes, you will have the odd 'crisis' when you will feel really rotten, (I have had about a dozen over 50 years) but otherwise there is no reason you should not be able to live a normal life.

    Best wishes 

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  • Posted

    Thank you so much gillian and john you've reassured me. 

    I'm from the UK and I'm wondering how long until I get my medication, I'm so scared of doing things and getting really ill. 

    I'm feeling anxious again tonight. I get to a point where I start to feel out of breath and tired and then I panic. I'm a very squeamish person and all of this is freaking me out something terrible. 

    I'm guessing when I go to the hospital I'll have that test where they take blood, inject me with a hormone and then take another blood test, will they prescribe me tablets that day?

    I just wondered if anyone could answer a few questions too. 

    I get really anxious and stressed, last year I use to feel like I was pumped full of adrenaline all the time, so I begged my doctors to change my antidepressants which they did, but I always still felt anxious and overly stressed. Is that because of Addisons?

    I've also had hair thinning and loss for around 10years, could this be why as well?

    I'm also very forgetful, I get a weird night blindness too, I always have bright lights on so I can see and I've had digestive problems for years. For the past year I've cut out gluten because it suited my stomach better,

    Another thing that has happened for 2-3years is that when I sleep or just fall asleep I go so cold I feel that I have hypothermia, I feel like I've been thrown in a cold sea or something. 

    I just wondered if all of these lead back to Addisons?

    I'm so anxious tonight I feel frantic, I'm taking deep breaths to calm myself down. 

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    • Posted

      Hi shabby - do you know when your short synacthen test is? It'll be a lot easier once that's done to get everything sorted...

      I surprised all doctors by turning out not to have Addison's after mine. But if you do have it then they'll take you seriously and sort out meds etc quickly. I remember feeling exactly as anxious leading up to mine - the doctors actually started me on steroids before mine as they were so convinced I had it. But you need to come off them to do the tests so it's easier to get the test first if poss.

      Remember you've survived all of these months before this blood test.

      Hugs.

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    • Posted

      Hi Rosie, yeah, I have read up about the short synacthen test. The hospital rang today and I'm going in to hospital tomorrow morning for one.

      Oh, what turned out to be the matter with you if you don't mind my asking?

      Thank you smile I'm so nervous. I just hope I can live normally.

      Hugs. 

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    • Posted

      Oh that's great that they're getting it sorted really quick so you don't have to wonder for ages. Let us know how you get on.

      Ha - I actually cried when my results came back negative for Addison's because I was really upset that the 'answer' to what it was had been taken away again.  

      I've got joyful Epstein-Barr like everyone else here...but as it's gone on longer than six months I got a diagnosis of CFS.  However, I am going to recover from it :-) it's a long slow process and hard work & lots of people think you can't recover but actually you can and there is millions of positive info out there about people who've recovered and how. If you turn out to be like me and have CFS then give me a shout and I'll signpost you to some resources :-)

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    • Posted

      Ha - ignore Epstein Barr comment above - I thought this was in a different board!!
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    • Posted

      Hi Rosie. So your doctor thought you had Addison's but it was just actually glandular fever?

      Thing is back in November I became very ill and was diagnosed with glandular fever and then a month or two ago with post viral fatigue and then chronic fatigue.

      I'm feeling so confused right now and I'm so scared sad 

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    • Posted

      Hi Shabby

      Yes I think we've been through very similar journeys up til now!  I first got glandular fever 18months ago, then I was diagnosed with post viral fatigue.  I went through a really terrible couple of phases where I had basically all the possible symptoms of Addison's (other than the pigmentation thing).  I even got started on steroids because I had such a 'classic' presentation of Addison's symptoms and they couldn't do short synacthen test for a couple of weeks. However the results of that came back that my cortisol was fine so I couldn't have it despite symptoms which is when doctors then suggested CFS as if been tested for everything imaginable and no explanation forthcoming.  I've made a lot of progress in the six months since the short synacthen test (although still nowhere near my normal self...reckon that'll be another six months or so).  So whether your short synacthen test turns out positive or negative, you WILL be ok - both CFS and Addison's are things you can either gradually recover from (cfs) or live a normal life with meds (Addison's).  The uncertainty is the hardest part as you don't know 'how' to deal with your illness, so it will all be improvement from here whichever way it goes! Best of luck for today's test and let us know so we can help as best we can x

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    • Posted

      Hi Rosie, thank you for the reassurance smile I had my text today, my hands and arm went all tingly and I felt really anxious and everything. I'm back home and ok now though smile 

      I was wondering when you had your Cortisol results at the doctors before you had the synacthen test, what was your cortisol level? Mine is 25 :s it seems excessively low. I was told it should be around 400.  So I think thats why my GPs were happy to diagnose me with Addison's before even having this test. x

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    • Posted

      Oh 25 does sound low.  My doctors messed up my cortisol level as they took it late afternoon - so it was of course low as cortisol is naturally lower at that time of day! I don't know what the figure was - they just phoned me up and told me to start steroids. I didn't get the numbers from the test either - just told it was 'fine' 😄 Kind of annoying as I feel more confident with actual facts n figures but there you go, I was too ill and weak to argue! Hope you get results soon and have a good rest x

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  • Posted

    Hi, I'm laying in bed crying my eyes out today. I feel so morbid and black and scared. 

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    • Posted

      Oh Shabby, it will be ok - as John said above it's very treatable and you can live a normal life with Addison's! I imagine it'll be a bit of a learning curve to start but hopefully you'll be feeling right as rain in no time with meds - have they given them to you now? 

      I found the people on the pituitary foundation helpline really helpful and supportive to talk to when I thought I had it. Might be worth giving them a call to talk to someone who understands x

      there's also an Addison's charity/foundation I think too but I don't think you can access their info til you've paid to join. 

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    • Posted

      Thank you Rosie. I'm just feeling scared and all I see on instagram are Peopke talking about adrenal crisis and picture of them in hospital. I'm so scared.

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    • Posted

      Don't, don't, don't look at that stuff!! You've had a hard few months feeling unwell and not knowing what it is, now you need to be kind to yourself and just learn from medical advice - don't google it's only the drama that people write about - not the 99% of time when things are fine. Knowing what you've got is half the battle and life expectancy for Addison's is NORMAL (I know...I researched it!).  Any illness in the world you could look up online and see all kinds of horribleness - seriously it's the same with CFS there's thousands of people online talking constant doom and gloom - or something like diabetes - tons of people with diabetes go round working, exercising etc etc but they could have a 'hypo' and get poorly... but they know what they need to do to keep healthy or if things go wrong they know the treatment needed and you will be the same. Are your doctors giving you support and advice around managing your meds etc? Seriously think about phoning the pituitary people they are so reassuring - also they have local support groups where you can meet other people leading good normal lives with Addison's x

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    • Posted

      Thank you Rosie. I think I've been in shock all week and it's all come over me now.  I just keep seeing things of people in hospital and stuff and I'm scared. I wish I only had CFS, I could deal with that. 

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    • Posted

      Yes I don't blame you - it sounds like it's all happened fast and quite a bit of new info to take on it's bound to be emotional. Have they confirmed your diagnosis 100% now? 

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    • Posted

      No not yet. I'm going to go down the doctors tomorrow. I can't eat today because I'm shaking so much with nerves. 

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    • Posted

      Oh you poor thing.  Sorry you're feeling so rough. I hope youve got nice people looking after you who can give you a big hug. If they do confirm you should be feeling SO much better very soon, the exhaustion probably makes the emotional side feel even harder. A friend of a friend of mine has Addison's - he didn't get diagnosed until after he'd been in hospital for some time as a medical mystery - but was up and back at work within a fortnight with the steroids it completely transformed his health within days! Take care and don't hestitate to tell doc you need emotional support/counselling/therapy if you want it x

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    • Posted

      I live with my parents as I've never been able to hold a full time job. So they're looking after me. I worry about mum though because she's not been well since my nana died. Mum had an under active thyroid but she's ok with it. 

      I'm a very nervous person so this has really tested everything. 

      Thank you Rosie for everything, you've really helped smile 

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