Addison’s disease, how do you cope?

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Hi guys, I got diagnosed with Addison’s in May 2017, I am 22 years old, I’ve read quite a few of your discussions about Addison’s disease and just thought i’d ask, how do you cope with it I seem to be off work all the time because I’m vomiting or just genuinely weak and floppy, how do you cope? Do you work? What jobs do you have? Thank you in advanced for any responses I get it is much appreciated!xx

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10 Replies

  • Posted

    Dear Jade

    I'm sorry to hear of your ongoing problems - there is something not right here, which you really need to follow up with your GP/Endo. I was diagnosed with Addison's at your age in the 1960's and once set on the replacement therapy my sickness/diarrhoea, weakness etc quickly went away. I don't have any problems 'coping' with Addison's provided I follow the 'rules'.

    1. Always take your tablets as prescribed every day. At your age it is easy to forget as I sometimes did.

    2. Always double/triple your dose if you have any infection 

    3. Tell any doctor/nurse/dentist etc that you come into contact with that you have Addison's

    4. Carry a blue card with you at all times. Foreign language versions are available on the web.

    5. Have an emergency injection kit with you when travelling abroad

    Best wishes

    • Posted

      Thank you for the reply, I do everything I’ve been told to do by my consultant, and have been following my sick day rules, will definitely make an appointment with my doctors as soon as possible 

      Thanks jade

  • Posted

    That's not good at all! Your meds must be off! I've had addison's for 15yrs and I work in a warehouse 45hrs a week. Call your doctor and make sure to triple up on your meds when you're sick. Good luck!

    • Posted

      Yeah I have been doing my sick day rules but just on day to day it’s draining me, but yeah as you have both said I will be making an appointment with my doctors as soon as possible x
  • Posted

    Hi Jade, just to add another voice to the chorus of "problem? what problem?", so your experience is not typical and you need to query. I set alarms on my mobile for 08:00 (10mg), 13:00 (5 mg), and 18:00 (5 mg).

    As you may have to wait a while to actually see your doc, this is one that you ought to be able to do on a phone appointment. They call you when they have a gap so it has to be when you don't mind who might overhear.

    Do bear in mind that Addison's is not common and so your doc is unlikely to be able to give you a quick answer of the top of their head. I'd be worried if they did!

  • Posted

    Hi, thanks for the reply I only have my tables twice a day morning and night, and have them on a regular basis, have them at 9am and 8pm x
    • Posted

      I'm not a medic but that goes against what my endo and everything I've read says. If you didn't have Adisson's, your body would produce about 20mg a day of cortisol in a circadian rhythm, max at 09:00, min at 04:00. Hydrocortisone is a lab copy of cortisol and your dosage should try to match the natural cycle as much as is practical. 10mg at 20:00 is too much too late in the day. Do get in touch with the Adisson's Society for an info sheet that you can take to the doc, you can probably download it.

      It is not goof but not enough to explain your symptoms. So deep conspiracy theory time now! Has you thyroid function been checked? are you producing breast milk for no reason? menstrual cycle disruption? Fingers or jawbone enlargement?.

  • Posted

    Hi, I have 10mg in morning and 5mg in the evening(just after dinner so around 7/8ish) and in sick days I have to double my dose of steroids, I am going for an early appointment with my consultant next month so will mention it to him then,as for my thyroid function I couldn’t tell you if they’ve been checked but will ask my consultant next month, thank you for all your help and advice!xx
    • Posted

      Ok, that's a little more reassuring, I thought you meant you were taking 10mg at 8pm.  Yes, your sick day protocol is correct. Have you been given an emergency injection kit? [When seriously ill (haven't been keeping down your medication), you need to inject 100mg and call an ambulance]. If not, you need to nag your GP practice.

      It occurs to me that in the meantime a pharmacist should be able to tell you whether it is "something you should query" (they'll never contradict the doctor in public!).

      I looked at the leaflet that comes with my HC and it mentions "malaise" as a possible side effect. I suspect that this is for "normal" people not replacement but I did read a case where a patient on replacement regime could only cope by taking quarter tablets throughout the day and night. But that was only writen up because it was remarkable - most people are fine on the standard dosage scheme.


    • Posted

      No I’ve not been given an injection pack, the doctors said I don’t need one but again will mention that to my consultant and see what he says about it but don’t see why some people need one and others don’t so will see what they say, thanks x

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