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Taking medication for Addisons so why am I still having symptoms?

Posted , 3 users are following.

holly19921
holly19921

I am a 21 year old female and was diagnosed with addisons disease around 8 months ago. I didn't experience any symptoms until 2 weeks before i was diagnosed, in that time my health deteriorated very quickly and I lost a lot of weight before I was hospitalized. Since being diagnosed my health has been very up and down, I felt great for about a month or so and then started to feel the same symptoms I had before I was diagnosed- extreme fatigue, lack of appetite, unable to sleep etc. This has since happened another 3 times. Currently I have had these symptoms for almost two weeks, I have doubled my dose from 20mg hydrocortisone to 40 and have been taking my usual dose of fludrocortisone as normal, 0.1mg. I have been to my GP to have blood taken and they results came back as expected, sodium very low. I have also been suffering from low blood pressure which is a common symptom of addisons but it is making it very difficult for me to lead a normal life as when i go to work (as a waitress) I am too weak and get sent home. Could anyone suggest why this may be happening? I am not feeling ill in any other way so can't understand why still having these symptoms. Sorry for the long winded description.

0 likes, 3 replies

3 Replies

  • marilyn56579
    marilyn56579

    Posted

    Dear Holly,

    Sorry to hear about your plight. I was diagnosed 5 years ago and it took a very long time, about 2 years or more, before I started to feel completely normal. Eventually I saw a very good consultant in Guildford, who found I just wasn't utilising the hydrocortisone properly, and it was taking until about 4 p.m. before my blood cortisol levels were reaching what should have been my morning levels. He suggested setting the alarm, waking up early to take my first dose, and that did seem to help. 5 years on, I just take my tablets without even thinking about it, but never thought I'd get here, and life is good. You are on a pretty hefty dose of hydrocortisone so I think you should speak to your consultant, hopefully you have one who will listen to you. It may be that you need a bigger dose of fludrocortisone, but I wouldn't do anything about changing this yourself, do speak to your consultant. Maybe he should arrange a day curve analysis, that is where you go into the unit for the day and they take your blood cortisol levels at very frequent intervals all day to determine exactly what's happening. Don't despair, it will come right in the end, but you can feel very alone as not even the g.ps generally have much, if any, experience of dealing with Addison's on a day to day basis.Good luck. (P.s. Have you joined the Addisons Self Help Group online, I found that really good)

  • holly19921
    holly19921

    Posted

    Apologises for the very late response. Thank you so much for your reply, I've never been in contact with someone who has Addison's before so it's great to hear from someone that knows exactly how I feel. I have had difficulty with consultants as I moved cities shortly after I was diagnosed, the one I have now seems good however he is very busy so sometimes it feels like they don't have the time for you. I also find visiting the gp doesn't do much good. You were right about the fludrocortisone, my dose has been increased and I have been feeling well for about 3 months now, this is the longest I have gone without feeling ill since I was diagnosed so I am hopeful that this will continue as I don't want to spend any more time in the hospital. I'm getting better at taking my medication however still find it quite difficult as I have gone so long with out having to take any thing . Thanks for responding to me, I plan on joining the help group now as well smile
  • veronica122
    veronica122 holly19921

    Posted

    Hello,

    I'm sorry to hear about your diagnosis. Adrenal issues are something that (I believe) many conventional doctors don't understand fully. I have extreme adrenal exhaustion (burnout), and it is very debilitating. I understand how you are feeling. 

    I don't know if you ever considered doing some research on the internet about Addison's and if there are more natural ways to cure it (or at least decrease the symptoms). 

    Many docs don't focus on the related issues, such as lifestyle, diet, and any other stressor you may be having now, or in the past that may be unresolved. I know for me, any little thing will overwhelm me and cause my body to react horribly - like a panic attack. My body is just so fragile right now. Rest and relaxation should be a focus for you, even just a half hour in the morning and a half hour at night. Your body needs it!

    If you want to read more about the adrenals - maybe there is some info that will help you or cause you to question your doc about certain things.

    I realize that Addison's may be in a different category than typical adrenal burnout, but personally I believe that there are lots of things that we can do or herbs or vitamins we can take to help heal whatever issue we have - perhaps in addition to traditonal medications if those are absolutely necessary.

    Best of luck to you...

    Veronica

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