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Posts posted by Lisa-A

  1. Is it possible for a person who must take thyroid replacement hormone to sometimes be able to convert the T4 to T3 and sometimes not?


    What would cause this? What would make a persons TSH soar into the 140's and dump below 2 in less than a week? This person had a thyroidectomy 18 years ago and 3 known pituitary tumors and never has had level thyroid numbers last more than 2 months.


    What is the relationship between a high stress childhood, PTSD and a burned out endocrine system?


    Do we all have Adrenal Fatigue? If so what can we do for that?


    How do we get the understanding and respect we deserve from Dr.s?

  2. Yup that is me before steroid and now that it has been taken away. Ever since getting back from Ceders and the "cold turkey" steroid withdawl all I do is sleep. I have slept almost every hour of every day for the past 9 days. I sleep through everything. I wake up for an odd hour in the middle of the night or in the daytime. My DH and I were just talking about my sleep and how scary it is.


    XO Lisa

  3. Robin & Mary-O,


    I am always amazed at all you guys do to keep up this site and always and looking for new ways to improve our lives and educate the Dr.s one by one.


    My Landlords have become the biggest researchers and they have so much knowledge form coming here, (this site) and the wife wound up diagnosing herself with some kind of endocrine problem, I sent her to my PCP and sure enough she has thyroid problems. They have also talked with 2 friends that they feel "looK Cushie" and they approached them and they are both dealing with symptoms so similiar and they are now researching.


    This is all from me googling my symptoms and finding this site way back when...One by one is how we get awareness.


    Thank You So Much!!!

    Love Lisa

  4. I feel like making copies and handing them out to Dr.s, randomly as I travel this country looking for answers.


    I will start with my Awesome GP and my New Newer Endo (The one who sent me to Mayo).


    I looked up Apathy for those who are to apathetic to look it up. lol


    Apathy is a state of indifference ? where an individual has an absence of interest or concern to certain aspects of emotional, social, or physical life.


    Apathy can be object-specific ? toward a person, activity or environment. It is a common reaction to stress where it manifests as "learned helplessness" and is commonly associated with depression.


    Learned Helplessness--Yuck!


    I know I am apathetic when I am not coming to the boards or sending cards. That is when I know I have hit the wall.



  5. Girl you have me fired UP! I am exhausted right now, but all of those ideas you have are spinning in my brain and I am going to GET INVOLVED this year.


    The care pages idea is a good one, but only if your friends & family believe you are sick, sadly many of us can't convince people we know. I hesitate to mention Cushing's to most of my family & friends because they immediately think it is a mental illness.


    The Oprah effect is a good idea, but I have emailed her so many times my fingers are worn to the bone. I am sad that with her struggle with thyroid she has not done more. I get the O magazine and she did say in an article that because of her "mood" changes and needing to focus on her health that most did not understand she lost many friends. Maybe someday she will look into more complex endocrine diseases but Dr. Oz is pretty conservative and the medical stuff is pretty basic that he covers.


    We need to focus on other talk shows that have less popularity, if we could get all the others it would be allot of coverage too.


    I like the idea of womens magazines, especially the ones that focus on weight.....


    A booth at the Endocrine convention is a fantastic idea, but I would need to be put in a straight jacket because I have such little respect for the jerks as a whole. I could be like the crazy animal in the corner frothing at the mouth as a warning to "what can happen if you ignore your patients"!


    Melissa thank you for all of your fantastic contributions to our site! You are a powerhouse!



  6. OK so all I have to do is plug in my speakers, turn them up, and click on the microphone at 3:30 and that is all? And to call in you just call the number you gave us?


    Now if we call in we should leave the computer or turn off our speakers so there is no feedback right?


    I am excited to hear my friends voices!.


    P.S. Ami--often I do not feel like I belong exactly anywhere health wise, so I get you there. But I do know that these boards have become a safe haven for me. I care about all f you guys, I keep up with your lives and I think of all of you so often. It was when I was at my lowest and literally everyone in my world abandoned me that you all stood firmly by my side and got me through. Ami you belong here, you are part of the fabric that makes this board so strong.


    Hugs Ami, I know where you are coming from, I reside in that lonely space all too often! :)

  7. I would Love to see Robin's herd of horses led by a Zebra with our awareness ribbon around it's neck.


    It could say something snappy, and our web address...


    I am usually good at snappy sayings but in the middle of a rough day pain wise.




    How about Hey Dr. Notice I am a Zebra before you get trampled by my herd! Ha!

  8. I read that with very mixed emotions. My 1st thought was that there is a big difference between alive and being able to LIVE your life, the way you want with no pain & illness & judgment.


    I was so happy to see that our dear Susan is this person, because I really wanted the patients voice in all of this.


    My Endo told me that with cyclical you live longer sure, but you are mis-treated, mis-understood, mis-diagnosed and sick as death with no intervention until you are dragging yourself around by your bloody stumps before you get the validation of a "diagnosis" But the damage it does is with you for life.


    Pretty depressing thought.



  9. The para-thyroid is so often overlooked.....that is one aea that has never been mentioned in 17 years & my new Endo said that it looks like I have problems there too.


    The endocrine system is a complex system with so many overlapping symptoms.....and if you have more than 1 thing going on it can be a nightmare to try and un-tangle.


    Good Luck!



  10. What about flooding Oprah.com with our need for awareness...I just sent an email with a link to this site...it is a disease that is up her ally, it is rare, a womens issue & we are called fat & crazy....


    She would be perfect, it is a longshot but all it takes is the right person reading about what we have been through!




    P.S. I will see what I can do in NorCal...

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