Friday, February 13, 2015

Where Did You Get Your Information?

A person wrote to me and said that she appreciated this blog and asked me where I got my information. She wanted to share it with her doctor. This is my reply to her.

Glad this is of help to you. It took 35 years of illness and tests to find out that I had Addison's Disease.

I list some of my main resources on the blog

The first three resources have really been a big help to me. I also study many, many online articles about Addison's Disease, but a lot of what I share is from my own experience. I study, compare to what I experience, then summarize it all. My hope is that it will help others live a better life even though they have low adrenal function.

I also could not find an endocrinologist who could help me. All they were worried about was that I wouldn't become a diabetic, which would only occur if the level of cortisone was too high. I was having trouble with low blood sugar. Since I don't produce any cortisone, I was in little danger or becoming a diabetic. I was in danger though of going into shock (Crisis) from low blood sugar. They wanted me to cut my hydrocortisone so, of course, I became very ill. I stayed with my doctor who listens to me and carefully monitors my condition. Few doctors know much about how to treat Addison's Disease or want to even try.  I would be honored if your doctor read this material. 

9 comments:

  1. Hey.
    I dont know if you can answer this, but I'm kinda desperate. I have had very declining health the last years, and something is off with what the doctors have concluded with.

    So...here goes: What I want is your opinion on wether or not I may have adrenal problems.
    I am pagued by; Extreme fatigue, lots of nausea, skin hypersensitivity (Especially it manifests as feeling cold all the time and I am now at the point where I am completely intolerant to cold.) digestive problems (extereme constipation, and switching into periods of nausea and softer stools, vomit reflexes (I have always been almost unable to throw up, but I get dry heaves, especially in the morning). Muscle weakness, (and the last half year a lot of muscle loss) a feeling that fluid balance in the body is off, actually to the point where the insides of my stomach feel liquidated, and even nasal mucus is extremely thin running. Balance issues, and problems with ear. Muscle pains, and very prominent the last half year: pains in the buttocks, backside of thighs and chins.

    The last 4 months I have had extreme cold feeling, except late night, where I get fever feeling, heavy sweating and hot flashes. (I'm male)

    ReplyDelete
  2. 2 Weeks ago, I got for the first time in my life, a 5 day cure of Prednisolon for an inflamed shoulder. The effect was off the charts. I was supposed to take to tablets of 20mg every morning, and naturally cautious of meds as I am, I started with 20mg only the first 2 days. I could just as well have turned a knob in my body, and EVERYTHING that has troubled me was gone. Skin sensation normal, fatigue gone, balance problems gone, muscle pains gone, cold intolerance gone, even the acne I have got the last half year on my back, started going away. I have never taken a medicine in all my life to have such a profound effect on my body. And that includes heavy pain medication intravenously for an accident.

    Further information: I have had episodes all my life, since 20 (I'm 40 now) where It felt like I got an infection and it made my whole system go whack. It could last anything from a few months to one and a half year at most. It always ended with an antibiotic cure for something else, then it feels like I have a ....adrenal rush of some kind. Like pouring icewater through my nerve system. Then I get numbness in my hands and feet, and afterwards I feel so much better, and the body starts working again.
    The last 5 years, something went wrong, and I cannot shake this anymore. I had a brief respite from antibiotics 2 years ago, lasted about 6 months then back to bad.
    I also 5 years ago had a serious accident on a downhillbike. I was admitted to the ER, and they did a CT to check for internal injuries. They did not find any, but as a "sidefind" they found what they thought was a 40mm tumour on one of my adrenal glands. They made a huge mistake and forgot about it.

    ReplyDelete
  3. I discovered this 2 years later by accident, and it turns out it should have been checked very throuroughy, including 4 hormone tests in a year. They never did. I contacted my GP, he went ash greay and got me a new CT within a week. Now they found nothing. They looked at the old pictures and turns out I had an internal bleeding, not a tumour. On the adrenal gland. I figured it was ok with that, and doctor ordered no hormone testing.
    Fast forward to last fall, I ask my current GP to check Cortisol as well. She did. Morning Cortisol test. never heard anything back so figured it was ok. Looking at the printout now, I see it is marked as out of referance range (elevated), at 590 (upper referance limit is 534). She has not ran further testing on this.

    Do you think I could have an adrenal issue? My life is pretty much in tatters at this point, and its such a struggle! I REALLY identify with a lot of the Addisons sympoms (cold and lately also leg pains), but what about the elevated result?

    I would really appreciate advice and your opinion. I know you are not a doctor, I couldnt care less, I know how many faults doctors make. They are no less human than you and I, and its human to make mistakes.

    Thanks up front, if you can help in any way!

    -Jo-

    ReplyDelete
  4. Sorry about storming the comment section, it was too long for one reply. I LOVE the blog btw, you have to keep this up! -Btw, I bought a blood pressure monitor 3 days ago. I have not registered low blood pressure. I have 120/80 approx, even though I am a rather heavy smoker, and not excactly exercise much. I also forgot to mention a lot of weightloss the last half years. I used to have a lot of salt cravings, now those feel gone too. More like nausea replaced it so no craving for anything. I did register a blood pressure drop when standing up. Went from 120/80 to 100/70 several times when I tried it.

    ReplyDelete
  5. This comment has been removed by the author.

    ReplyDelete
  6. This comment has been removed by the author.

    ReplyDelete
  7. btw; after the Cortisone tablet cure ended, I quickly regressed. Its as bad as ever again. I also have a distinct loss of nightvision

    ReplyDelete
  8. Joe, I was about fifty when I found out that I had Addison's disease. It was just after my daughter's wedding. I collapsed, was achy, could hardly move, was nauseous, dizzy, and very cold. I had no appetite, but lots of back pain, muscle cramps, depression, headache, eye pain and blurry vision, little night vision, and hot flashes (especially in the evening when I was more tired). It got worse. I began throwing up whenever I ate anything and couldn't sleep at all. After three days of this, I stumbled into my doctor's office. He looked at me and suggested that I try a little cortisone ( a low dose mild hydrocortisone, not the big guns - prenisone). I thought, "I'm going to be dead soon at this rate, Why not!). Like you I immediately started to feel better.

    Later we did more tests and it showed that I do not produce any detectable level of cortisone. Besides the blood test there are other tests for low adrenal function; saliva, pupil reaction, blood pressure upon standing, and temperature (cold). It sounds like you should insist on more testing on your adrenal glands, then discuss the results with your doctor.
    (for tests see Adrenal Fatigue The 21st Century Stress Syndrome by James L. Wilson; Dr Wilson also has a website)

    My doctor explained to me that sometimes levels may look fine in our blood, but the hormone may not be getting into the cells and may not be utilized effectively. Unfortunately, they don't have a test to see what our cells are doing with the hormones and nutrients. Mainly we have to go by the body's response. When my body suddenly perked up after having some cortisone, that indicated that it was definitely something I needed. Over many years, we had tried all sort of vitamins and minerals, allergy treatments (I have lots of allergies and chemical sensitivities), treatments for some injuries, and many other things, but nothing made much difference until I tried cortisone and that was dramatic.

    Most doctors do not look for low adrenal function, so you have to insist on the tests. I am going to be frank with you. You might want to ask your doctor for help with quitting smoking. I know it is hard, but they can make it much easier for you with patches etc. If your adrenal glands are not doing well, smoking will really stress them and make you extremely ill. If you quit smoking there may even be a possibility that you could recover adrenal function and not need to be on cortisone. I have to have almost all chemicals out of my home even my computer is on the other side of a window, and I must drink filtered water and organic foods and I can not go into any buildings other than my home. All this helps and it keeps me alive. If you do not want to end up like me, you will need to do something soon to relieve the stress on your adrenal glands. The obvious thing to begin with is quitting smoking.

    Don't give up! You may need to go to an endocrinologist (one with experience in treating adrenal problems), if your GP is unable to help.

    ReplyDelete
  9. Thanks so much for answering, Cheryl Anne!
    I have sacked my GP this Friday. She "wasnt interested in exploring this avenue". I have made an appointment with a new one that has a good reputation come Monday, and I will make sure to get a throrough workup on hormone levels, and Cortisol and Aldosterone in particular.

    I do suspect I may have an actual problem with this now, and something makes my instincts tell me it may be an overproduction that has gone on so long it has led to a burn-out of the adrenal glands.

    It literally feels like it has been too hig for too long, then it started a cyclic hyper/hypo way out of normal.

    ReplyDelete