August 26, 2009

shakinghands2Hi Mary.

You know, I really don’t think this is a time for us to be sepa­rate, Mary, in our advo­ca­cies.   Seven years ago, I went a dif­fe­rent direc­tion that I felt was impor­tant, and still strongly do, as an acti­vist.  That will con­ti­nue because I believe in what I am doing. You don’t have to agree with my stance, but we can make the choice to work together in what is com­mon bet­ween us – sup­por­ting the use of desic­ca­ted thy­roid and hel­ping others with the shortage.

As I see it, Mary, we each have a won­der­ful legacy. You will always be appre­cia­ted for your work as much as many appre­ciate my work. That will never be taken away.

So why not be uni­ted in this fight, Mary, wor­king together to sup­port patients during this shor­tage.  Thy­roid patients need us.

Janie

  • Want to keep track of these “fringe web­site” blog posts? ;-) Curious what’s on Janie’s mind? Use the noti­fi­ca­tion on the lower left of the links, called a News­let­ter, or an RSS Feed.
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  • Check out the patient-to-patient book with even more detail (and which doc­tors seem to res­pect more than websites).
  • Need to unders­tand all your best options for thy­roid treat­ment? Go here.
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This entry was posted on Wednesday, August 26th, 2009 and is filed under Patients, desiccated thyroid, fda. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.

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12 Responses to “An open letter to Mary Shomon”

  1. just myself said:

    Aug 26, 09 at 9:51 pm

    Come on Mary, power in num­bers!!!! Ima­gine the num­ber of peo­ple (in the hun­dreds of thou­sands) that Janie can bring to the table. The combo of your friends and Janie’s is a train that’s uns­top­pa­ble. Do what is the right thing to do. Fight for the patients and join hands with Janie as the gene­rals in this fight. This may get nasty and we need to fight together.

  2. Margaret Casebeer said:

    Aug 26, 09 at 10:50 pm

    I don’t unders­tand this mes­sage.… is there some sort of break for rift bet­ween STTM and Mary Sho­mon? I ALWAYS con­sult STTM, not so much Mary Sho­mon, not for any rea­son in particular.

    I’m new to all this, must star­ted my Armour 1 month ago.… after a year of con­sul­ting on-line my mode­ra­tor disap­peard, now is my drug disap­pea­ring????? (Not a com­meb­tary on anything other than our suc­kie health are sys­tem.) I’ll be really angry if I can’t con­ti­nue my des­si­ca­ted thy­roid ( you’d think if a per­son can get pot, etc. they could get des­si­ca­ted thyroid — lol!).

    I totally res­pect and trust what you are doing here… please tell me I’m going to be okay!

    (From Janie: no rift on my end. Just think the two of us should be figh­ting this together where there would be more power. We’ll see.

    Yes, I think we will all be okay. Just may have to squirm through some mud for awhile that appears to be coming from the FDA. We’ll fight for what’s right.)

  3. Belinda Raley said:

    Aug 27, 09 at 1:04 am

    Uni­ted We Stand, Divi­ded we Fall.
    It is a sign of strength and real lea­dership when one can put down per­so­nal fee­lings and make a deci­sion which is for the good of the whole. I heard somewhere:

    You can only lead as far as you have come.

  4. Nikki said:

    Aug 27, 09 at 2:44 am

    Janie,

    I agree with the above com­ment, “Power in Nun­bers.” We all need to stick together and strive for one cause here.

    That’s to keep desic­ca­ted thy­roid medi­ca­tion available.

    I know the lea­dership I pro­vide is not as large with desic­ca­ted medi­ca­tion as you are, but I too have many peo­ple worried about this and want to fight to keep going.

    One in par­ti­cu­lar is an 8 year old little girl who was born with no thy­roid at all. Sick as an infant the mother sought out desic­ca­ted thr­yoid medi­ca­tion and got her on it. Finally after years of ill­ness she is living the life a little girl should. Isn’t that what this is all about?

    I for 2 years now — have moved this forum into the facts about desic­ca­ted natu­ral thy­roid meds and have openly made miles­to­nes in kee­ping awa­re­ness over there too on labs and sup­ple­ments that are essen­tial to us.

    I ask you as a thy­roid patient and Co Lea­der to please be open to my request of asking you to let some of us join in on the fight to change this situa­tion too.

    Please con­tact me.

  5. Mary Shomon said:

    Aug 27, 09 at 5:38 am

    (Below is a res­ponse from Mary Sho­mon, and we have also emai­led pri­va­tely with more thoughts. My hope is that from this day for­ward, Mary and I will be able to share our names to our con­cerns, and share our names to actions. Together, with out com­bi­ned talents and com­mu­ni­ca­tion skills, I think Mary and I can be power­ful against the current idiocy, and against what may lie ahead. And we’ll hope all of you will join us. Janie)

    Janie,

    There isn’t any spe­ci­fic or orga­ni­zed ini­tia­tive (I wish there was some huge thy­roid patient asso­cia­tion, with pho­nes, and offi­ces, and fun­ding, don’t you?) so I know we’re all just doing our best indi­vi­dually to muddle through all the con­flic­ting infor­ma­tion we’re get­ting, info from the com­pa­nies, the FDA, con­ver­sa­tions with peo­ple, etc., and doing our best to share what we’ve found online, or in forums, artic­les, etc. Yes­ter­day, I put together a site for peo­ple who were loo­king for a home base where they could coor­di­nate their grass­roots efforts: http://www.savenaturalthyroid.com and a page at Face­book http://www.facebook.com/pages/manage/#/pages/Save-Natural-Thyroid/121680434089 (The http://www.savenaturalthyroid.com site is, for now, just a feed to the FB page, but perhaps it can be deve­lo­ped further?) Ever­yone is doing brains­tor­ming and coor­di­na­tion and I know your thoughts and exper­tise would be most wel­come. We are all on board together to do wha­te­ver we can to pro­tect our rights to life-saving medi­ca­tion that so many of us rely on. But let’s not tip off the FDA, ;-) so if you have spe­ci­fic thoughts on ways that we can work and should together, please do email me directly at mshomon@thyroid-info.com so we can dis­cuss it.

    Thanks,

    Mary

  6. Heidi said:

    Aug 27, 09 at 5:50 am

    To all who belong to this site, rest assu­red this “Pit­bull” of a woman already called Forest Labs not about the Bull about the shor­tage, but about the refor­mu­la­tion and rip­ped the drug safety woman “Chris­tine” a new A**hole!!!! I’m extre­mely vocal and asser­tive ask Missy :) , and I will call these peo­ple myself and and tell them my story and my voice WILL be heard. Remem­ber, the “sqeaky wheel gets the grease” Let’s inun­date them today and not let up!!! There is power in num­bers and many voices!!!!

  7. Connie said:

    Aug 27, 09 at 7:42 am

    I myself will write to the FDA, I have been on Armor since feb, and feel like a dif­fe­rent per­son, its been like a miracle for me, I tem­po­ra­rily swithed to natu­reth­roid but it didn’t work for me and switched back to armor and am great, but went to fill my RX and they were out and another phar­macy only had ! bottle of 100 left, its upset­ting, my mother was on armor for 45 yrs !!! what is their problem !!!

  8. kendra said:

    Aug 27, 09 at 8:18 am

    Im in, and very worried, was the refor­mu­la­tion of Armour just the beg­gi­ning of a night­mare? do we even know exactly why it was refor­mu­la­ted? Im glad Janie and Mary are uni­ting wha­te­ver is nee­ded I will do, anything to not have to go back to Synth­roid. Im about to get my doc to write a presc­rip­tion for teh Cana­dian Efra thy­roid. But Ill be on thy­roid the rest of my life since I dont have one! So Id rather just pick up my meds at the drug store, duh~!

  9. Cindy said:

    Aug 27, 09 at 7:31 pm

    I’m going nuts. I live in NE PA. Armour is bac­kor­de­red. No Naturth­roid or Wes­troid– both una­vai­la­ble for 90 days. My alter­na­tive? Synth­roid or some other T4 only med. When I was taking T4 alone I felt like I did when I was taking nothing. I switched over to Armour and it was like I was a new per­son. Now I’ve been without for over a month. Not fee­ling too good. Actually, I feel really crappy. And I’m pi**ed. Mostly I’m exhaus­ted and sha­key and I have to think about thinking.

  10. Rene said:

    Aug 28, 09 at 5:18 pm

    Is using synth­roid and cyto­mel together an option???

  11. Ann said:

    Sep 28, 09 at 4:31 pm

    Yes, I am using both but feel lousy. I am going to try to get some Nature-Throid from AZ. Here is the follo­wing e-mail I recei­ved from RLC today:

    Hi Ann,

    Thank you for con­tac­ting RLC Labs. At this time we are expe­rien­cing a bac­kor­der in all strengths of Nature-Throid and Westh­roid. Nature-Thoid 1 grain will be the first relea­sed in mid-late Novem­ber. If you need a phar­macy to fill a presc­rip­tion, I do know of one mail order phar­macy that has some avai­la­ble stock. You will need your phy­si­cian to fax a copy of your presc­rip­tion to Clarke’s Phar­macy. Please make sure it has your name and phone num­ber on it also. Then you need to call Clarke’s and pro­vide them with your address and billing infor­ma­tion. If you have any further ques­tion please let me know.

    Clarke’s Phar­macy
    480 – 488-2007 Phone
    480 – 575-0541 Fax

    Pha­lene Leicht­man
    Cus­to­mer Ser­vice & Sales Assis­tant
    RLC labs, Inc.

    602 – 276-1693 Fax
    602 – 314-7888 Direct
    877 – 797-7997 Toll free
    PLeichtman@rlclabs.com

  12. Donna said:

    Nov 14, 09 at 12:07 pm

    (From Janie about the below post: I do want to cla­rify to rea­ders of the STTM blog that there is no veri­fied ban by the FDA against desic­ca­ted thy­roid. This is patient spe­cu­la­tion, not current veri­fied rea­lity. We’ll have to see what the future holds for the truth.)

    There is a peti­tion to the FDA to stop the ban on desic­ca­ted thyroid.

    http://www.thepetitionsite.com/7/tell-the-fda-not-to-ba...

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