Addisons disease

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I have been diagnosed since 2003 . Latley I seem to have all bad days and can hardly walk up a flight of stairs without extreme shortness of breath a muscle weakness

I wonder if I'm gradually not absorbing oral cortef. Anyone else experience this ?

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  • Posted

    Tell me your following?

    1. What is your daily medication?

    2. When is the last time you had a blood test?

    3. Have you seen a doctor in the last 6 months?

    4. Has your life changed in the last year?

    - job, relationships, monetary?

    Note: Your Adrenal Glands are your stress glands,

    physical and mental stressers consumers your

    cortisol?

    5. Do you practice top up "matenance" of medication

    when necessary?

    6. How old are you? This is very important.

    7. It's interesting to know, how were you diagnosed?

    I have detailed my history while answering several others.

    There should be a file where all the participants could outline general background of illness so each of us could complete. As far as I'm aware, that doesn't exit.

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    • Posted

      10 -30 mg of cortisol per day divied doses

      Last blood test has been a while ago.

      I see my internal Med Dr regularly. Especially when feeling ill and receive decade shots as needed which really help!!

      I never heard of top up " maintenance "

      I am 54 years old and nothing has changed in my life lately. My friends tell me they dont how I do it all .. Seems normal to me but I try to listen to them

      I was first diagnosed with hypothyroidism. When I continued getting worse i.e. Losing weight , lethargic and friends telling g me I had a great tan and I was never in the sun I decided to look up hyper-pigmentation (I was an RN for many years and still practice some ) and found the diagnosis. Went back to my endo and asked him about it and you could see the light bulb go off in his mind. I took the ACTH stim test and did not react at all .. Cortisol levels did not rise a bit. This was in 2003

      Thank you for answering. I'm desperate. I can't even exercise in so exhausted and feel sick all the time

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    • Posted

      It's just seems as though I am not absorbing the cortisol anymore like I used to. I take probiotics and synthroid also .. I do not use generic. Went down that road before and it screwed me up
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    • Posted

      The reason I asked you about blood test is you be anemic. It appears if many months and you become weak and tired. It's essential to have an annual bllood test. Also you potassium levels can reduce even quicker. Bother iron levels and potassium levels are effected. I know this sounds weird, but if you feel bad, legs hurt achy, fab your salt shaker and place a small about in you grand a lick it. Keep a packet aI salt in your purse.

      Addison's causes dehydration! It effects your electrolytes. Every time I would ask a Endocrinologist that I had for 10 years,before she retired, she would repeat eat dalt

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  • Posted

    Sorry, accidentally hit the reply button. Anyway, she would say eat Salt! This is has the same effects as some of the properties in Fludrocoritsone or florneuf. It helps the body retain salt.

    Top up maintenance is needed if you feel bad any day, exhausted, slightly ill, dental appointment or a stressful event. You should take an additional 10mg when it occurs on top of your daily dose. That is why you should always keep a months supply in hand.

    If your endocrinologist hasn't told you that

    GET RID OF THAT DOCTOR!

    Get a new one and tell them you want the information from scratch.

    Also, my most difficult period was Menopause!

    I was 52, remember, we are looking another hormone.

    If you are having heavy final periods you need top up maintenance.

    Believe me in those days an additional 10ng is the difference between a good day and a bad day.

    We're back if I haven't covered everything.

    Take care

    Darlene

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    • Posted

      Thank you for the good info.

      I do not skimp on salt and can tell when I need it. I do however try to avoid high potassium foods.

      After I was diagnosed I switched endos immedialy. This new endo saved me. ( unfortunately he moved to a job of lecturing other doctors.)

      He diagnosed me after extensive blood work with a polyglandilar disorder in which my ovaries , thyroid and adrenal glands all shut down at once. I wish he was still here. 😓

      I have an order for a Tom of blood work from my MD. She is amazing and basically scolded me yesterday for not taking enough cortisol. She told me to take 60 per day till I felt better 😳 Seems like an awful lot to me so o think I will take 45 and see how i do till I feel better.

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    • Posted

      Sorry to hear about your daughter. I hope that she responds well to her treatment, Some individuals see to have a hard time.

      The reason the doctor told you 60mg is the standard standard advice is double your Hydrocortisone for three days if you have a cold, flu or virus.

      A good example is think of how sick you felt when you had the flu before you were diagnosed. Then after 12 to 24 hours you started to get over it, getting your energy back and feeling good. That's because your body was excreteing more cortisol to get you better.

      Now our bodies can no long do that, we have to take it the additional amount, guess work, to get over the hump.

      In my case the autoimmune disease seem to skip a generation, my granddaughter had Hasimoto since 18. Now a twenty three she is definitely showing signs of Adrenal Insufficiency. She graduated from University last May, and will start her Masters later this year. Medicine is field. She needs to go into Endocrinology. Lol Oh, she also had test positive fir Celiac Disease and both of us we diagnosed with EDS hypermobiliy early 2015. I had Graves Disease at 16 and had 90% of my thyroid removed at 19.

      I tracked down the line of inherit

      W

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    • Posted

      Whoops did it again,

      I tracked down the line if inheritance. My grandfather on my fathers side also had Graves Disease. Sadly no one ever diagnosed him. I have s photo of him at twenty with eyes bulging out. And located a photo of him st 15 with his eyes fine. No one ever realized he should look any different! The illness took over in his late teens as with mine. He married at 18 and his wife and children always new him looking that way.

      He had two strokes and dropped dead with a massive heart attack on the kitchen floor right in front of his youngest son who was 18 at the time.

      He was 56. On his death certificate it stated heart attack, high blood pressure. It wasn't until last year that I tracked the photos and took them to endocrinologist. She stated, I'm surprised he lived that long. Imagine he lived buzzing around, hot, everything running super fast in his body fir over thirty years. His son is now 72.

      write back if you want.

      Darlene

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