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Hi, I was diagnosed with Addisons 2 mths ago

Posted , 6 users are following.

jackie92127
jackie92127

My memory and concentration are so bad that I have difficulty remembering what the Endocrinologist said to me today. He did 2 stenachthen tests while I was in hospital which indicated Addisons so he put me on hydrocortisone 20mg twice daily. Now that that has not improved my symptoms in the slightest he wants me to wean off them and repeat the test in 4 weeks, he also admitted he got it wrong and I don't have Addisons. I also have a pituitary tumour an acoustic neuroma and an aneurysm. My life is unrecognisable.......I'm in constant pain in my joints, constant urination, had carpal tunnel release surgery, sleep all day long, no energy and full of anxiety and depression. My optic chiasma is being compromised and my vision, on bad days, is double or fuzzy. I have stopped being a functioning member of my family, 3 kids and a wonderful husband. I'm also an alcoholic in recovery for a good few years, a day at a time and would appreciate any help whatsoever in finding out where to go next. My Endocrinologist suggested a psychiatrist.......I am a mess right now, sobbing and wondering why the hell and how the hell do I keep on going when I don't have any cortisol in my system. Please help me x

0 likes, 13 replies

13 Replies

  • carolyn80777
    carolyn80777 jackie92127

    Posted

    You sound desperate.What is the plan reguarding the tumour,neuroma and aneurysm? Surgery? It sounds very complicated. It must be really difficult to cope.Seeing a Psychiatrist is a daft suggestion when you are so ill, of course your a mess, who wouldn't be? Your Dr needs to take advice from other Endocrinologists if he doesn't know what action to take. I pray that the Lord will give you strength and hope, that you will be healed, and for peace as you wait. Carolyn x

     

    • jackie92127
      jackie92127 carolyn80777

      Posted

      No plan of action, just stop taking the Hydrocortisone for 4 weeks and do the stenachten test again. It's all so bizarre as all my blood work is abnormal. I just feel so alone and maybe he thinks it's psychosomatic but it's not because all the other Specialists say it's a very complicated case.
  • angela291164
    angela291164 jackie92127

    Posted

    Hi jackiefor 3 years ive been told ive got addissons then i havent and took months for hydrocortisone to have effect..i stop them in two days and dont know how ill cope..dont panic as your gp will get info from endriconologist so sorry you have so many other health problems..im so glad you have your husband and children..if you r a recovering alcoholic you will overcome this set back all the best for the future if you would like to send me a private message i am happy to give you my email address for you to offload to im not a healthcare worker but am happy to listen thru your tough times ..best wishes..angela
    • jackie92127
      jackie92127 angela291164

      Posted

      Thank you so much for your kind words. Did they diagnose you with Addisons and are now taking you off the Hydrocortisone?
    • angela291164
      angela291164 jackie92127

      Posted

      Yes they said addisons and ive been on hydrocortisone for 3 years with out it i was sick everyday couldnt eat drink work etc in and out of hospital on iv fluids etc bed at 4pm everyday nightmare ..now im back at work not 100% but better but it tok them 4 years to diagnose
  • barbara98940
    barbara98940 jackie92127

    Posted

    Hi Jackie, I'm sorry to hear you are going through a rough time. No wonder you are feeling upset and depressed. I can think of two avenues you can explore. Firstly, look up addisons disease on website betterhealth vic. gov. au (it's explanation of addisons is the best I've found), and see if it gives you any ideas e.g. are there any alterative treatments for addisons disease? Secondly, you could ask your GP to refer you to a different encrinologist, who may have different ideas.
    • jackie92127
      jackie92127 barbara98940

      Posted

      Thanks Barbara, this is my 2nd Endocrinologist.... The 1st totally forgot about me. I was supposed to have an mri done every 6 mths and he never sent the forms, for the last 2 years, to have the MRI'S done. I'm seeing a Neurologist today for the 3rd time and the last time I saw him he just shook his head and said he had never had a patient with such complex complications. I'm at the end of the road here, after today I don't know where to go and his has cost me€€€€ to be told absolutely nothing.
  • Roddy999
    Roddy999 jackie92127

    Posted

    Hi Jackie,

    Sounds like you've drawn all the short straws!

    Have you already had an op to remove the pituitary tumour? Once that is done, your eyesight will start to recover though it will take a few months.

    You can get a lot of good info about pituitary disease at pituitary.org.uk including 'diabetes insipidus' (which might explain constant urination). PD can have the same symptoms as Addisons ['secondary adrenal insufficiency' rather than primary as in simple Addisons - but same risk of an Addisons Crisis following trauma].

    Wierd though that hydrocortisone didn't work for you?  Yet? Your pituitary [when working] is responsible for instructing eg your adrenals, thyroid etc to release/stop various hormones which are essential for normal living. So maybe there are other deficiencies to be found? Unfortunately the op won't restart your pituitary but the hormones can be replaced with medication.

     

    • jackie92127
      jackie92127 Roddy999

      Posted

      You're a mine of information, thank you. They won't do the op on the pituitary because it has changed shape, not grown per se. I have Menieries Disease also and that's because of an acoustic neuroma. They're completely baffled but in the meantime I haven't the energy to shower and am housebound because my vision is so bad. I'm 47 with 3 adult kids and my life is unrecognisable. Don't know what to do now.
    • Roddy999
      Roddy999 jackie92127

      Posted

      I have (well, had) a benign adenoma [= tumour] on my pituitary, so I've read a lot about it! But only scratched the surface compared to your neurologist. The op is fairly simple nowadays so I doubt that they are stalling because of the cost,

      The curious phrase 'impinging on the optic chiasm' turned out to mean that it was pressing on and distorting my optic nerves. By the time I got my op, I had blurred vision in my right eye and 'reduced accuity' in the left. After about 3 months, the left was fine and the right was 'reduced accuity', After a year, both were fine.

      I went on hydrocortisone (10/5/5) on first diagnosis and within a few weeks it was like I was on steroids.biggrin. That's why I was suprised that your endo took you off it  when your Cortisol is so low. Maybe 'Prednisolone' (the other version - see 'Hydrocortisone advice pituitary patient leaflet' on the pituitary dot org dot uk site) might work better, though I can't see why..

    • jackie92127
      jackie92127 Roddy999

      Posted

      Thanks for the advice, it's badly needed and you seem to make more sense than all the Specialists!! I'm going to the Ophthalmic surgeon next week for another field test so hopefully we can go from there. I'm hoping to be hospitalised as I can see all of them under the same roof and maybe they can sort it all out but based on past experience... I'm doubtful .Really appreciate your input. Jackie
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