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Posts posted by friday

  1. They are. They are looking for any and all offers for help so if you are willing and/or able let them know. I believe it's Barbara who is heading up the education and awareness area.


    PNA link to quoted content

    "WE NEED VOLUNTEERS! If you have an interest in volunteering as a speaker, trainer, Booking Agent, etc., please contact us, as we need your help! Contact barbara@pituitary.org today!"

  2. Mary,


    Has anyone explored following the podcasts on a Tivo? I am trying to figure out how to do that now but haven't quite gotten the hang of it yet. I can put in a custom URL I'm just not sure where to point yet!


    As always THANK YOU for such a great job. :wub:;)








    259 people have listened...so far!


    I had been under the impression that they would automatically upload this to iTunes but it's not there so I figured out how to do that myself.


    If you're an iTunes user, it should show up in your podcast within 24 hours.


    If you're a BlogTalk member, or an iTunes user, clicking on the stars will help keep us "visable" and get more listeners to the show / archives / podcast.


    I am thinking of submitting this podcast (the name for the whole series, not individual episodes) to places like podcastalley or elsewhere. I'm not a member anywhere yet so if you are and would like to submit it, that would be fine, too.


    I'm seeing this as an awareness project as well as for information for people on the boards, so if you know of any good podcast portals, please let me know.




    Again, to listen, just click on the microphone :)



  3. Florinef the patented brand name drug has been discontinued completely as of June which was posted above. The only options now in the US are generic from either Global Pharma which is a part of Impax Labs. The other is Barr Pharmaceuticals. The Global tablets are whitish and round and Barr are oblong kind of egg shaped.


    The formula change occurred in the UK very recently and Australia earlier this year. Again I have NOTHING to say this is happening here in the US. I spoke to the my pharmacy who is a large national chain and so far they have not been notified of anything changing. I personally have Global generics for the fludro and have never had a problem.


    I have no idea what fludrocortisone IC is....wish I could help there.

  4. Hi all, on another list I'm on a note was posted about the generic form of Florinef called fludrocortisone acetate has changed formulas in the UK recently and Australia in the last year. I have found ZERO documentation that this has happened in the US.


    The new formulas now require refrigeration and cannot be left out for even an hour. It has to be transported cooled. If it is left out it shouldn't be taken. This is a new thing in the UK and some folks found the pharmacy not storing it correctly so please check this out over there!

  5. My endo uses the term remission because this disease has a bad habit of returning. I have had a BLA and although technically "cured" I was told to keep that diagnosis in my medical history because of all the complications around Cushing's and a possibility of ectopic adrenal tissue although not real common. I've had a few doctors look at me puzzled with Cushing's and Addison's on the same page being they are polar opposites.


    I never use the word "cured" with any chronic illness. It seems to lull folks into a false sense of security. I have seen so many people adamantly claim a "cure" only to end up with a reoccurance and further surgery often a BLA. I get a lot of grief for this view but I am more a realist than optimist. I had one person read me the riot act for cautioning that claim a few weeks after pit surgery #2 so I only give my opinion when asked.


    My $.02...

  6. Melissa, what a GREAT find!! Thanks very much for sharing. I'll be downloading my copies too but it's comforting to know our wonderful host MaryO has them online too.


    Lesley I agree that is VERY disconcerting but some have had success after one surgery....I went about a year in remission....some remain....don't know. I went for the BLA because my body just couldn't take much more damage.


    As for using these docs....there is one listed with one of the articles that I had the absolute WORST experience with. Another patient (the late Kathryn McBride Miller) and I met and discussed our local endos and this horrible doctor topped both of our lists. I went to him AFTER pituitary surgery WITH pathology reports showing the ACTH issues (plus others) and he proceeded to YELL at me and tell me I never had Cushing's and had just had unnecessary brain surgery. I left there in tears. You can PM me if you're considered a doctor in this (OH) area and I'll share his name but for obvious reasons do not want to post it publicly.



  7. Dr. F does not react negatively to mental disturbance symptoms or at least he did not with me. I sobbed and told him exactly how I felt and he wrote it down and kept listening. At the end he said "I'm 99% sure you have Cushing's but we need the labs to confirm and an MRI to find the cause." Later after the end of the sobbing visit I said something to the effect of "I'll understand if you say it's in my head like everyone else..." About a week later he said, "yes it is in your head, on the pituitary specifically...."


    He knows that cortisol screws you up psychologically and does not in any way make light of it or ignore it.



  8. Hmmm, definitely a hard topic that sets you up for a knife in the belly but I'll share. Many of you know I was misdiagnosed bipolar long before I even knew of the hormone cortisol. In that time I was highly volatile and frankly didn't care if I woke up. I have in some periods had suicidal tendencies and sought help. Knowing the signs yourself is your first defense. I had about a half dozen ways to go and be neat about it...(not sure why that was so important) I hated my life, my body getting so fat (a phobia from childhood thanks to my mom) the inability to function or work. I have always been an overachiever and going from 100-0 in 2.2 seconds really did me in. Obviously I'm still here to tell the tale but that was because I had a good support system. I had to learn to trust someone not to blow me off and take my feelings seriously which is still very hard to do.


    On the positive side I was lucky and this experience strengthened my marriage. We did walk the path of me being a hypochondriac and "faker" and after a lot of counseling and forgiveness we're much stronger.



  9. From http://thyroid.about.com/od/thyroidbasicst...fusion.htm?nl=1


    Why Low TSH means Less Medicine and Other Confusing Thyroid Issues

    Your Guide, Mary Shomon From Mary Shomon,

    Your Guide to Thyroid Disease.

    FREE Newsletter. Sign Up Now!


    Many people write to me asking me to lease explain to me "why, when my TSH results show that my TSH has dropped, the doctor wants to LOWER instead of RAISE my medicine?" Or, "doesn't a high TSH mean I have too much thyroid? And if that's the case, why is the doctor INCREASING my thyroid hormone medicine?"


    This is one of those confusing issues that people frequently write to ask about, hoping for an explanation. Let me try to take you through it to clarify.


    First, the thyroid produces thyroid hormone. When it's functioning properly, the thyroid is part of a feedback loop with the pituitary gland. The pituitary senses the level of thyroid hormone that the thyroid has released into the bloodstream. The pituitary releases "Thyroid Stimulating Hormone" (also known as TSH) to stimulate the thyroid to release more thyroid hormone. Usually, the pituitary is releasing TSH at a steady, normal rate, to maintain a steady normal rate of thyroid hormone in the bloodstream.


    When the thyroid, for whatever reason -- illness, stress, surgery, obstruction, etc. -- doesn't produce enough thyroid hormone, the pituitary detects this reduction in thyroid hormone, and it moves into action. The pituitary makes MORE TSH, to help trigger the thyroid to produce more thyroid hormone, in an effort to return the system to "normal."


    So, the test to measure the amount of TSH in your system will show higher than normal TSH levels when the thyroid is underactive, because more TSH is being produced when your thyroid isn't doing its job.




    If the thyroid is overactive and producing too much thyroid hormone -- due to disease, or taking too high a dose of thyroid hormone replacement drugs -- the pituitary senses that there is too much thyroid hormone circulating. The pituitary then slows or shuts down TSH production, so that the thyroid will slow down production of hormone. This drop in TSH is an attempt to to return circulating thyroid hormone levels to normal.


    So, a test to measure the amount of TSH in your system will show lower than normal TSH when the thyroid is overactive. So, LOWER TSH = OVERACTIVE THYROID / HYPERTHYROIDISM.


    If you are being diagnosed, the doctor will use the TSH test -- and hopefully, other valuable tests, including T4, T3, Free T4, Free T3, and antibodies tests -- to evaluate your thyroid function and determine the optimal course of treatment. But generally, for those who use TSH as a guideline, a TSH level from 0 to .30 is considered hyperthyroid/overactive, and a TSH over 3.0 is considered hypothyroid, or underactive.


    When you are being treated for hypothyroidism with thyroid hormone replacement drugs, doctors will typically attempt to medicate you into the so-called "normal" range -- of .3 to 3.0. (Patients who have had thyroid cancer, however, are often given suppressive doses that maintain TSH near to 0 in order to prevent cancer recurrence).


    So, when you've gone for a checkup, and your TSH comes in below .3 (and your doctor does not have you on a suppressive dose of thyroid hormone), they will often REDUCE your dosage of thyroid hormone, because levels below .3 are considered "hyperthyroid" (overactive.)


    And if your TSH test comes in above 3.0, doctors will often INCREASE your dosage of thyroid hormone, because levels above 3.0 are considered "hypothyroid" (underactive.)


    To recap:


    LOW TSH means closer to HYPERthyroidism (overactive), too much thyroid hormone circulating.


    HIGH TSH means closer to HYPOthyroidism (underactive), not enough thyroid hormone circulating.


    If you're being treated with thyroid hormone drugs (such as Synthroid, Levoxyl, Armour, Thyrolar, etc.), if your TSH comes back as too low, most doctors will usually LOWER your dose.


    When TSH tests come back as higher, that means HYPOthyroidism (underactive), and doctors will typically RAISE your dose


    It can sound counterintuitive, but that's how it works!


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