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Self care til ACTH test?

Posted , 6 users are following.

rosie34970
rosie34970

Hi I wonder if anyone could give me some advice. My endocrinologist suspects Addison's and has requested an urgent ACTH stimulation test. Apparently it will be in 2 weeks.

I have been really struggling with faintness and vomiting and cramps and things and I wondered if there is anything I can do do keep myself as safe as possible til the test? I really don't want to end up having an Addisonian crisis if it is Addison's. I have been trying to ensure fluid intake and take dioralyte when I vomit. Family are going to come and supervise me in a few days as I live alone. Any other suggestions?

Thanks

R

0 likes, 11 replies

11 Replies

  • Lorraine_W
    Lorraine_W rosie34970

    Posted

    Why is he waiting for two weeks? Surely the sooner they do the test they will know how to treat you. I got very poorly quickly after thinking I had got flu but blood tests revealed a very low sodium reading. I was admitted that day and the test was done the following morning which confirmed the diagnosis. Hope they soon get you sorted Rosie 

    Best wishes Lorraine 

    • rosie34970
      rosie34970 Lorraine_W

      Posted

      Thanks. I'm trying to push to get the test moved forward, I think two weeks is the 'urgent' timeline here unfortunately. I haven't had an electrolyte imbalance yet (the times it's been tested) but it does feel scary waiting considering the possibility of crisis :-/ I'm trying not to panic as I think that'll make it worse ...

  • dena_79123
    dena_79123 rosie34970

    Posted

    Did you have an AM cortisol test? If so, how low was it? Unfortunately, if you have adrenal insufficiency the only "self care" that will really help is medicine to replace the cortisol you no longer make for yourself. Get a blood pressure cuff, and keep a close check on BP. Research the other symptoms of crisis, and if anything sets off warning bells...get to an ER and tell them you are being evaluated for adrenal insufficiency. Crisis can happen fast.

    • rosie34970
      rosie34970 dena_79123

      Posted

      Thankyou. No they gave me a random cortisol on Friday so said it didn't tell them much. I actually had a couple of morning cortisol's done last year which came back fine (don't know exact numbers) so hopefully it'll be ok; but because my symptoms are strongly suggestive they want to proceed straight to short synacthen test for a decisive answer. I have got a blood pressure cuff funnily enough - how low would it need to be to worry? I've been to a&e a couple times recently when cramps got bad but electrolytes were ok so they sent me home.

    • dena_79123
      dena_79123 rosie34970

      Posted

      I was told if it stays below 90/60 to seek help, but it also depends on what your normal is.
    • rosie34970
      rosie34970 dena_79123

      Posted

      Great, thanks that's useful. I'm usually around 110/80 so I will keep an eye.

      Thankyou

  • 1941john
    1941john rosie34970

    Posted

    Rosie

    From my experience many years ago:

    1. Eat luttle and often

    2. No spicy foods

    3. No alcohol

    4. Rest and relax as much as possible

    5. Plenty of fluids

    Hope you get the test done quickly. Living with Addison's is not like living with cancer, Ms or other things provided you take your medicines and avoid obvious risks of infection. If it is Addison's you will pick up back to normal living v quickly.

    Good luck

    • rosie34970
      rosie34970 1941john

      Posted

      Thankyou John that is good to hear and reassuring that I'm doing the right things. Am doing everything I can to chase the test but they don't seem to have a great sense of urgency and are on annual leave today! Fingers crossed it gets sorted soon.

      Thanks, Rosie

    • rosie34970
      rosie34970 1941john

      Posted

      Sorry John I've got another question! You said to avoid possible infection and my mum is in process of recovering from flu.

      My parents are the only people who would be able to keep an eye on me and I don't want to be on my own in case I faint again and being so unwell and on my own is getting me down and I'd really like company.

      If she is recovering do you think it'll be safe to be in same flat if we are careful about hand washing etc? Or would it be safer if just my dad came (though he might be carrying the same germs from being with my mum)?

  • rosie34970
    rosie34970

    Posted

    Good news! The endo is going to put me on some hydrocortisone til my test cos he thinks it's safer. Yay, hoping it makes me feel better :-)

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