An open letter to Mary Shomon
Hi 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
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last time, told me couldn’t get Natural thyroid or Armor thyroid, was left with no medication for months number went to over 104, couldn’t stop coughing, not to mention hair loss ect. now saying Natural thyroid is again on back order. what is happening????
(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…
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
Is using synthroid and cytomel together an option???
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.
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~!
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 !!!
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!!!!
(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
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.
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.
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.)
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.