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Mary Shomon

The Thyroid Foundation of America is Shutting Down

By March 12, 2008

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After more than 20 years, the Thyroid Foundation of America (TFA) is shutting its doors at the end of this month. The news was announced in a February 6, 2008 letter to members from the founder and director Dr. Lawrence Wood. The news is also announced on the TFA's 800-number voice mail, and the website homepage, where it says: "After 22 years of helping thyroid patients and educating the public and the media about thyroid problems, the Thyroid Foundation of America will be closing our operations on March 31, 2008." According to the TFA website (www.allthyroid.org / www.tsh.org) , [TFA] is "a membership organization...supported by contributions." A spokesperson for the organization reported that TFA is closing down due to a lack of funding.

In his letter, Dr. Wood stated, "As we close TFA we plan to use any remaining funds to assist us in organizing and preserving our educational materials for future use by other organizations." Members were also given the opportunity to file for a prorated refund on membership fees by an early March deadline.

I'm hoping to have a chance to speak with Dr. Wood sometime next week to get more information on the circumstances surrounding the shutdown. In the meantime, however, I have to say that I'm sorry to hear about this. It's no secret that I have at times been critical of TFA. The group, while meant to support patients, was founded and run by a doctor, and often took a narrow, conventional approach to thyroid education -- an approach I've criticized in the past as being more focused on the doctors than the patients. The group was sometimes quick to come to the defense of deep-pocketed drug companies on issues of interest to endocrinologists, even when it seemed to work against patient interests.

At the same time, TFA provided a much-needed service, by answering questions and distributing thyroid information to many thousands of people each year, and doing so the old-fashioned way -- using an 800 number phone line, and sending brochures and newsletters via regular mail. TFA was able to reach out to many thyroid patients in the U.S. who were unable to use the Internet.

Despite my criticisms, I mourn the loss of TFA. TFA's closure leaves a huge gap -- there is no other national organization of and for all thyroid patients. There are a few specialized sub-groups of varying size and effectiveness, for example, but no groups that serve the overall community of more than 30 million American thyroid patients who are coping with hypothyroidism, hyperthyroidism, autoimmune thyroid disease, thyroid cancer, and various thyroid conditions. TFA has, on its web page, listed a variety of professional medical groups, as well as some of these patient organizations as resources, but truly, none of them is in a position to do what TFA was trying to do.

In the end, I'm not sure if it was a lack of members, insufficient outside funding, rising postal costs, the growing dependence on the Internet for non-profit organizations, or other reasons that ultimately are causing TFA to close. What I do know is that it's a sad time for thyroid patients, given that more than ever before, we need better thyroid information, support, and advocacy.

Logo: Thyroid Foundation of America

Comments
March 13, 2008 at 1:48 am
(1) Ms. Piper says:

I guess I have mixed feelings about
TFA closing down. On one hand, I’m
still furious with this group for not
coming to the aid of thyroid patients
when they changed Synthroid back in the
early 1980s, when at least some of us
got truly ill from this–they wouldn’t
even acknowledge that such changes had
occured in the product back then
(I joined TFA around 1985 or 86 and
practically begged them for help, but
of course was ignored). Disgusted, I
didn’t join again as I felt they had
let all of us down…..

On the other hand, I do feel they did
some good by providing some decent
brochures, etc. about thyroid disease–
and there was one really nice lady on
the phone there in recent years who
truly seemed like she wanted to help,
but there was only so much she was able
to do. So again, it’s mixed feelings
for me on this–although I can certainly
understand how they couldn’t keep
enough membership to stay afloat, as
TFA did not always come through for
patients in important ways.

March 14, 2008 at 3:40 am
(2) Nat says:

As a dedicated reader I am very unhappy and now at a loss of where to get the correct information on Hashimotos problems,what type of thyroid medication to take,the education that you have provided us and the ability to learn and beable to know what questions to ask our Dr.’s and what reasoning to apply to this. The Dr.’s are always amazed at the knowledge I have and it is because of this knowledge that you have provided me and many people that I have shared this with. What are we going to do now? Depend on the drug companies? No not ever. Depend on what the Dr.’s are telling us? No not ever again. We are empowered with this information and have the ability to ask and defend for our health not the drug companies that don’t give a rat’s about us. It’s always about money. What about the people that really care and appreciate the fact that you are providing us with quality knowledge. Please rethink this……not good to withhold the information and service you have provided. Please allow us to have this information. We need you and the information provided.

March 14, 2008 at 3:55 am
(3) Cathy says:

I didn’t know this organization existed. Medical practitioners never informed me of the many organizations/information available to me. It took years of searching the internet.

I am saddened that our community is loosing such a great resource!

March 14, 2008 at 6:00 am
(4) Judy says:

Well, at least we have Mary! I have obtained excellent info from Mary Shomon, and she’s quick to point out other resources for thyroid patients. I wasn’t aware of the TFA, so I won’t miss it, but it does seem a little weird that it’s shutting down. Cheer up, people…Mary’s got our backs.

March 14, 2008 at 6:10 am
(5) Violet says:

As my thyroid is failing I have had to deal with this condition for over two years now. My treatment options are limited because I had a heart attack 1996 and I am on a very small dose of Eltroxin to prevent it from having an adverse effect on my heart. Consequently I am always looking for information on symptom relief. I believe in educating myself and I get alot of information from the internet. I have found that many patients do not get adequate information from their doctors on how to improve their lives once they have been diagnosed with thyroid conditions. Any organization even if somewhat traditional in their approach that seeks to improve the lives of patients is important. It is a loss for the community.

March 14, 2008 at 7:18 am
(6) Dr Carla says:

I got sick with Grave’s at age 16 while in Nursing School. I spent my life in traditional western medical profession(s) while living as a (usually) healthy woman with a tricky chronic illness. I’ve been a member of TFA ever since I found out I was ill. Over the years I have referred a number of patients (and friends) there for information & personally have gotten referrals for some of the most open minded endocrinologists via them as I have relocated during my education. While western medicine still has a lot to learn about those who fall outside the “average” — it is helpful to keep in mind that some people are “average”. TFA was especially good at explaining that care of the average. I’ve supported them financially for 35 years and am sad to see them go.

March 14, 2008 at 11:50 am
(7) sandra H. miles says:

IN the past, I have sent donations to & received info from TFA. It shall be missed.
Broda Barnes,M.D. Research Foundation has been another “good” source.
Some other sources of info are: Sanford Siegel, D.O.,M.D.;Patsy Wescott & Drs. Wood, Cooper & Ridgway.
Many thanks to Mary J. Shomon!!!

March 14, 2008 at 2:37 pm
(8) suzanne carawan says:

Why don’t we start our own non-profit and build it from a 2008 perspective–meaning virtual to keep down operational costs, etc. Perhaps TFA did not receive enough contributions, but perhaps they also did not change with the times. Non-profits can now be run very cheaply with technology and be more powerful than ever. A fast-paced organization is needed for thyroid and we need to keep up the awareness/pressure on research and challenge conventional ideas. I’m ready to pitch in to start such an organization—is anyone else with me?

March 14, 2008 at 3:40 pm
(9) Marcia Gorodko says:

I’m not at all sad that they are closing. When I was first diagnosed with hypothyroidism back in 1985, I joined the TFA in the hopes that they would help me. All they ever did was ask for money. They never sent me any information about my disease even when I asked. All they did was send me their newsletters about their fundraising events.

March 14, 2008 at 3:52 pm
(10) Brenda Mason says:

I agree with Suzanne (8) – I think there’s a need for a new, modern, forward thinking non-profit organization that can build a power base to address the many issues faced by sufferers of all things thyroid. I would be more than willing to help out – however I am in Vancouver, Canada so not sure how that would work. Perhaps a North American organization?

March 14, 2008 at 4:28 pm
(11) Patty says:

Wow …I along with some here never knew they were here. I dont know I was diagnosed with graves about 2 years ago.
To tell you the truth I seen nothing as far as symtoms then…and now am put on synthroid and I just dont notice a difference now either.
Maybe someone out there can explain that to me??!

March 14, 2008 at 4:44 pm
(12) Peter LaFond says:

Why is it that MDs are the narrow minded people and mystics, sages, and other romantics are not? Like it or not science has displaced storytelling as how to describe the world workings. I do not like a lot either at first, but when I saw how simple science is ( not easy but simple ) I saw the way it is.
The real impediment to decent health care are the big 5 HMOs minus Blue Cross.

The TFA provided crisp to the point analysis on thyroid situtations. As far as I am concerned the biggest problem now that the TFA is folding will be people turning away for allopathic cures and falling for bogus curatives, debunked theories, and recycled discoveries. ie Broda Barnes, Wilson’ syndrom and assorete T4/3 combo therapies.

I should disclos that I am thyca survivior and therefore have more strict TSH suppresion concerns- but people with Graves disease can fall into my category during intial treatment ( RAI aversion )
IN CLOSING THOUGH -MARY’S SITE HAS A SUFFICENT AMOUNT OF SCIENTIC INFORMATION, and I do not believe she is snake oil salesperson. I would march in the streets along side her it demand better health care for all Americans- heck if I knew how I would lead a march right down to Crawford Tx.

March 14, 2008 at 7:24 pm
(13) Brenda says:

Americans are being poisoned by the massive amounts of chlorine, and fluoride, and alum which forms aluminum fluoride, plus dental mercury -
these all displace iodine in healthy htyroids – adding bromide pollution and it is no wonder americans are so unhealthy, have so many allergies, weight problems, depressiona, suicide .
europe never allowed unlimited chlorine and alum in drinking water, and is pulling back flouride in water, toothpaste and beverages (from source water) -bone cancers in children were the “canary”
Teh population “tested” by the mega labs is itself unhealthy, so the blook levels for T3 and T4 are already distorted …
lovely

March 14, 2008 at 8:08 pm
(14) ira says:

In respons to Suzanne Carawan’s comment:

>Why don’t we start our own non-profit >and build it from a 2008 perspective–>meaning virtual to keep down >operational costs, etc.

In The Netherlands we have the OFFICIAL Thyroid-Patients Organization

(Remind me,..if you are interested,..to look up their official name..)

Quite a number of Thyroid-patients were NOT happy with the info of this society (it was felt, that this ‘club’ was just a puppet for the conventional Dutch medical society/pharmaceutical companies..)..

A few years ago, this resulted in the ‘Birth’ of the society/organization..

HmnH: Hypo maar niet Happy (Hypo but not Happy)…

By now, this society is ackowledged by many Medical Doctors,..and the ‘Official Dutch Thyroid Society’ ..

http://www.hypomaarniethappy.nl/ is its website..

Sincerely,
I. Verwoert, The Netherlands

March 15, 2008 at 9:27 am
(15) TJ says:

Hi Mary –

There was some pretty decent content on that site. I wonder if you might consider working out an arrangement to have access to that content and put some of it on yours? TJ

March 15, 2008 at 3:21 pm
(16) Donna Gielarowski says:

It’s a very sad day, anyone that does research information for the thyroid patients even if we have different opinions, they will still be mmissed. The Thyroid Foundation was around for a long time, sorry to see you go.
Donna
Thyroid patient for 10 years.

March 16, 2008 at 8:10 am
(17) Nikki Prohaska says:

I would like to see another non profit organization to grab hold of it and help us with our concerns. Mary – if you have some suggestions on how to keep this running for us thyroid patients – I’d be willing to assist and sart if needed.

March 16, 2008 at 4:13 pm
(18) Jem says:

I am a old timer to this forum for years ,This is my first posting in 4 years Sorry I seldom visit the site any more.I made it a well known fact that I was a great supporter of the TFA..This past October I had the Great pleasure and opportunity of meeting Dr Wood himself at the ATA seminar which was held here in NYC …There was no mention of this Fine organization closing ..Sad to say it is..I read it weeks ago on their web site..
Dr Wood had a dream to help all with this disease .If you had followed the weblink you would have seen what was going to be done throughout this country in thyroid support.

I personally know what the TFA did for me especially when I was sent to the Tri state chapter support meetings held here in NYC under the direction of Dr Terry Davies at Mount Sinai medical center THANK YOU Dr. WOOD and Dr Davies

Many persons years back here were against the TFA on this site.We all have differences in treatments .What suited for one person did not always suit the other.

When the ATA meeting was announced here in NYC only one Thyroid forum on the Internet announced it letting all Thyroids know it was open to the public http://www.thyca.org/ was represented .the TFA was represented http://www.tsh.org as was http://thyroid-fed.org/ .There were several authors of Thyroid books present and in attendance
Thyroid disease can do just about any thing to us. There is no cure .absolutely none

One thing we all must realize is that each person has it own views no matter right or wrong .
You still can have a voice heard at the ATA web link
http://www.thyroid.org/patients/
Hopefully all we take charge of the health as well as their own knowledge.

Sadly again GOOD BYE TFA. I Thank you for all you did for me when I was in trouble. Dr Wood you did help many ,

JEM aka Kathy

March 17, 2008 at 4:40 pm
(19) Sonya says:

I feel that TFA was more about promoting physicians than educating thyroid patients. Although their education pamphlets are very accurate, they are also very focused on promoting the doctors associated with the ACE. I have met with Dr.Wood and have had a conversation with him at one of the ATF patient forums. I told him my story of what happened to me under the care of a board certified endocrinologist. I informed him that the ACE did a poor job of making sure that the doctors gave the patient accurate and up to date information. Please view my website if you are interested http://www.thyroidvoice.com

March 19, 2008 at 3:52 pm
(20) Diane Beck says:

I’m already very depressed: it’s another loss to my Cushing’s Disease.

March 21, 2008 at 8:52 am
(21) Jan says:

I never heard of the organization either, but it seems shocking they are shutting down. I had no idea that thyroid problems were so common until I developed symptoms. Can’t this group reorganize so as not to use snail mail and thereby save money?

March 21, 2008 at 1:21 pm
(22) Nancy says:

I am not that unhappy to see the organization go. The organization did not keep up with the times. They supported doctors that were against Armour, and wanted it off the market. I agree with others that it would be good if others started a new organization that people could and would support.
I feel that they did this to themselves. I would rather have the correct information rather than wrong information.
It wasn’t until I found Mary’s book on hypothroidism did I learn anything. The organization was absolutely no help to me.

April 4, 2008 at 4:42 pm
(23) Judy Holohan says:

Can’t we get any grants or donations for a building on Long Island? So many of us have had thyroid problems out here and we don’t even have enough endroconologist. We need help and fast.

April 18, 2008 at 4:24 pm
(24) Laura says:

I must say I am disappointed whenever a resource for something as important as thyroid disease shuts it’s door. Having said that and having been dealing with Hashimotos for the past 32 years I have to say that I have tried to get straight answers from the association, doctors, specialists and not until I started soaking up all of Mary’s info have I been able to finally get a handle on my levels. Still a long way to go, but finally have a good endocrinologist who does not balk when I ramble off the info that Mary has given and how it is working for me – how natural herbs do affect me. Heck he actually agreed with the soy relationship!! Now at 49 my thyroid is beginning to really fail and thank goodness I do not feel like I am all alone and unable to fight it. Thanks Mary! As I said always a sad day when help groups and associations close, but in my case wasn’t much help – have gotten more from Mary S’s books, newsletters, open and upfront way she has of answering questions then over 30 years of searching for help!!!

May 12, 2008 at 3:03 pm
(25) SUSAN says:

ACTUALLY I NEVER FOUND ANYTHING WORTHWHILE ON THE SITE THAT I COULDN’T FIND ELSEWHERE ON THE INTERNET

May 14, 2008 at 3:22 am
(26) Lynnette Wagar says:

I too am very dissapointed in the ONLY thyroid foundation for community, as well as the medical communities awareness or should I say un-awareness of the seriousness of thyroid diease!!! My youngest son of 20 yrs young, Justin Wagar died a year ago from today because he was so MISDIAGNOSED that he had a “5 pound thyroid gorter” removed from his neck when it was too late. 2 years later of paying for every office visit, blood tests and thyroid medication, his non thyroid got the best of him and he committed suicide! He couldnt take it anymore. He suffered everyday it was gone! What’s so funny is after he got his last blood level test done, almost 3 weeks later we recieved a letter stating that his blood levels were way below normal range and he needed to contact them a.s.p.!…..What was I supposed to do, bring his dead body on a gurney back to the Dr.?????????????? This is a serious matter people! And I am in the process of making a new serious AWARENESS not only to the public, but to the medical community!!!! I HAVE to get Justins story out now! I am still grieving over my son that I was so close to and love so very much. When I saw that the only thyroid foundation was shutting down, it felt like a SLAP IN THE FACE not only to me and my deceased son, but to the rest of thyroid sufferer’s as well!
I am doing a 2,650 mile hike along the pacific crest trail at 43 years young in memory of my son! And YOU TOO! My goal is to raise $20,000.00 wether it takes me 6 mos to a year! PLEASE visit Journey for Justins charity/donation web site that is now in process of completion at: http://www.myspace.com/journeyforjustin
for your support in any way. Please feel free to leave any comments and let me know how I can help you. Someone has to believe us and this VERY SERIOUS diease. Thank you, and I wish you all the best. Justins mom, Lynnette Wagar

July 14, 2008 at 8:59 pm
(27) Sara Manis says:

I was diagnosed with thyroid disease and I’m now looking for more resources to help me deal with it and I need valuable info to help me lose weight and also about medicines and if and when I can stop taking my thyroid medicine and my Doctor had told me that I would have to take for the rest of my life and I also have goiter growing in my throat because of this disease the Doctors in my area are refusing to take it off. we all need these resources of this organization and we should all be fighting to keep it open.

November 29, 2012 at 11:18 pm
(28) Reg Strong says:

Dr. Lawrence C. Wood is and has been an enormous inspiration to me. He was my endronconologist for close to 50 yrs and I probably wouldn’t be alive today if it weren’t for him. He has written books and devoted his entire life to thyroid disease and is the most caring doctor I have ever met in my life. It saddens me to hear people say anything negative about the TFA after all of his hard work throughout the years. He gave his heart to patients and was totally devoted to patients new and old.
I’m truly upset to see that the government didn’t fund this great organization. There is not another like it.
For anyone’s information, Dr. Wood has joined forces with “Grave’s Disease and Thyroid Foundation”
http://www.gdatf.org/ He didn’t stop when losing the TFA, so this shows his devotion. God bless him and all who had a hand in this work.

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