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Primary Addisons Disease

Posted , 6 users are following.

sarah8393
sarah8393

I have had Addisons for 6 years, I take 12.5mg of Hydrocortisone daily 10mg at 10.30am with 0.5 of Fludrocortisonethen evenings just  and 2.5mg of Hydrocortisone at 4.30pm, I am managing fine, however I forgot to take my meds all day and realised this at 5.15pm after work so took them straight away. I actually felt fine all day to be honest no problems at all anyway I decided to get my cortisol level checked but they couldnt fit me in till 10.30am, I know the best time to have it taken is at 8am as  your cortisol production is higher early morning. However the cortisol result came back as 1 (not good) so my question really is how did I manage  all day without medication and the fact I felt really good that day ?? There isnt enough info on this kind of stuff anything you try to search comes up with the same old info (Addisons Disease info) arrhhh drives me nuts

2 likes, 11 replies

11 Replies

  • tara1212
    tara1212 sarah8393

    Posted

    Hi Sarah I came across this website doing a Google search. I am reaching out to get more information on Addison disease. I haven't been diagnosed with it but some symptoms I have are making me think it could be addisons disease. The most visible embarrassing symptom I have is hyperpigmentation on my face. I never had melasma with any of my pregnancies nor have I been on hormonal birth control. I've delt w/ this hyperpigmentation for about 5yrs now and I have tried everything you could possibly think of and researched and I still have no answer! I recently had and estradiol level checked and it was in range. And any major cut I get heals with brown pigmentation. I'm always tired and have no desire to do anything but rest when I get home from work. When I'm up I always feel faint just like my body is going to fall sensation. I have an endocrinologist I saw a few months back regarding low/borderline t4's and was put on a low dose of levothyroxine. I follow up with him in June and I intend on expressing my concerns. But overall my main question is will discoloration go away once meds r started? Thanks in advance and I look forward to hearing back from you smile

    • darlene07012
      darlene07012 tara1212

      Posted

      Yes. If your tanning of the skin is due to ACTH from the pituitary gland, which is why a person's skin tans, it goes away fast after s person commences taking Hydrocortisone.

      Are you sure it's not Virtilico, I think that's how you spell it. It's another autoimmune disease.

    • tara1212
      tara1212 darlene07012

      Posted

      Thanks for the response! I'm Caucasian so I don't think it's vitiligo not that I can tell anyway. These are very noticeable brown/bronze patches. It's so hard seeing my face like this! Do u have Addison disease? How did/does it affect you?
    • darlene07012
      darlene07012 tara1212

      Posted

      Yes. I was diagnosed in 1993 while I lived in the UK,

      I amost died.

      At that time, 4 out of 10 were diagnosed on the autopsy table. That statement was from "Professor Wass at the Oxford Infirmary in mid 1994. I was sent to him because I was still feel ill. In 10 minutes he knew what was wrong with me, he stated I was among about 5% of the individuals with Addison's that Hydrocortisone is consumed by the body quickly. Anyway I must take my medication in three doses, Hydrocortisone at 8,12, & 4.

      With Addison's the darkening of skin occurs elbows, knees and hairline/blotches on the face. When you become weak and very sick as I did, the lines on the palms of your hands will be very tanned.

      I have autoimmune diseases, little did I know, l had Graves Disease (Overactive Thyroid) and had 90% of my Thyroid removed at the age of 19, that was 1975. I lived in the UK from 1984 to 2001. I now live in Southwest Florida.

      At the age of 36, January 1993, I was diagnosed with Addison's, I turned 60.

      I also have other illness that are not autoimmune.

      I only joined this group over the weekend. I reply to three others, hoping to help. I have not review websites and Forums in 15 years.

      I am also Caucasian, born and raised in Ohio.

      I have 5 siblings of which none of them have any illness or autoimmune diseases.

      My grandfather on my fathers side had Graves Disease, never diagnosed. He died of high blood pressure and had a stroke and died at age 58.

      Does your skin look patchy due to loosing pigmentation in areas, which then makes the non-effected areas look darker. Google Virtiligo, spelling might be wrong. The disease shows up more on individuals of a darker race, but anyone can be effected.

      Darlene

    • tara1212
      tara1212 darlene07012

      Posted

      Well I'm glad you joined! I've searched online to get more information but just symptoms I see remind me of myself but actually talking to someone living it is a totally different story so I'm very grateful to hear from you smile

      Initially about 5 years ago I started developing one small blotchy spot on my cheek and it freaked me out to the point where I called a spa and got set up with photo facials and different laser treatments bcuz I went in assuming Sun damage...well of course they totally agreed but now I totally wished I researched more. I think they agreed with me bcuz they wanted money. And I trusted them and with it being my first visit ever to a spa so I did it. So I'm thinking now that all that injury to my face and if I do have Addison's and not knowing it back then made the wounds heal like any injury/acne scars I get now all brown and very pigmented. I just know in my heart this isn't right to look this way sad

      So I'm assuming since u said u have other autoimmune disorders that it's pretty common if I have one more then likely you'll have the other? I know my maternal grandmother had diabetes but that's about anything endo wise I know of.

      I just hope I finally get some answers when I see the Dr bcuz I'm tired of just putting my life on hold and feeling lost and like a normal human with clear skin.

      Have u delt with hyperpigmentation on your face?

    • darlene07012
      darlene07012 tara1212

      Posted

      Yes, I had blotches along the hair line. The doctor at the time thought it was hormone spots, no not from the Pituitary, he thought I was beginning menopause early, I recall looking at him and thinking, I'm only 36!

      Then my knees and elbows started turning dark and finally the lines in my hands. Generally any place that creases or lines along with an overall tanning of the skin.

      As soon as I started on medication the dark started to lighten. It took about a month or so for everything to disappear.

      I can say that if I exert my self to the extreme or become ill the pituitary gland will still release ACTH as a signal that cortisol is needed. This is because my body had used/ burnt up all the medication.

      It fades in a few days. This is just a general skin darkening not blotches.

    • tara1212
      tara1212 darlene07012

      Posted

      Ok so I had a acth serum and cortisol a.m. done and the acth was 14 with a range of 6-50 and cortisol of 10.8 . So the acth causes the skin discoloration? So if my acth is in range but on the lower end would that still cause hyperpigmentation? I'm just really confused now that I'm in range but on the lower side. I really want my face to look normal again. Did you have an acth test done? How did ur results turn out?
    • darlene07012
      darlene07012 tara1212

      Posted

      I was diagnosed January 1993, Any pigmentation went away within 6 months.

      I don't recall my numbers.

      You stated your numbers are on the low, but within range? You need to have more than one doctor's opinion.

      I don't recall your situation, but if you are unhappy and don't understand why you are not satisfied that she/he can cannot answer your case, then move on.

      Also a pale skinned person will show the spots more than a medium.

      Are you getting worse/ better? Whatever the case if your Adrenal situation is corrected you will go back to normal within a year at the most.

    • debbie31431
      debbie31431 tara1212

      Posted

      Tara,

      My mom had Addison's disease, but she wasn't diagnosed until she was 30 y/o. She went to an Internal medicine Dr. and he looked at the skin on her face, i think with a (Black lite) and she looked like she had a butterfly shape on her face around her nose and the wings spreading out on her cheeks. He put her on Cortone, if i remember right and she felt better pretty quickly and had more energy. She took the Cortone for many years, & had trouble if they tried to stop her treatment when she moved out west. She took it until she passed away in 2001 at the age of 78. I hope that helps, it was so long ago

      Debbie H.

    • kenzii92818
      kenzii92818 tara1212

      Posted

      Hi Tara sorry for the really late reply, you may have sorted this problem by now but if not I too had  hyperpigmentation on my face and neck years before diagnosis with  Addisons Disease .I did have early Menopause at the age of 32 as well. But not everyone gets early menopause. Another thing to look out for is hollow cheeks this I also had for years before.. Then when Addisons starts to kick in I had extreme weight loss and dizziness I still worked full time even when the sickness started for that day. I then took to my bed,,Just ask for the blood test for Addisons if your concerned. Good Luck
  • debbie31431
    debbie31431 sarah8393

    Posted

    The meds you have been taking most likely have a long enough half -life that made you feel good thru the times you mentioned. Once that effect is over though you would probably start experiencing the symptoms of your adrenal insufficiency again.

    Debbie

    *my mom had Addisons too.

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