• hypothyroidism

A press release just came out sta­ting that the U.S. Food and Drug Admi­nis­tra­tion (FDA) has “unvei­led the first phase of its Trans­pa­rency Ini­tia­tive which is desig­ned to explain agency ope­ra­tions, how it makes decisions, and the drug appro­val process.”

Of course, this doesn’t mean thy­roid patients can stop what seems like an inane deci­sion to require makers of desic­ca­ted thy­roid to “prove” , via expen­sive cli­ni­cal trials, that it’s a safe and effec­tive medi­ca­tion. RLC Labs, for exam­ple, the makers of Natu­reth­roid and Westh­roid, will be affec­ted.  Over 110 years of patient use, with 70 years by RLC, cer­tainly reveal it’s a safe and effec­tive treat­ment. But at least this trans­pa­rency ini­tia­tive will “poten­tially”  give us bet­ter infor­ma­tion about the pro­cess. We’ll see.

About the upco­ming Part 2 with Dr. Lowe (see the blog post right below this): Some folks were boo­ted off last Thurs­day and had to quickly get back on. The pro­blem is when you get back on, you may lose your abi­lity to chat.  i.e. the sys­tem stops the chat abi­lity once there are 300 indi­vi­duals already on the chat.  You can lis­ten, but you can’t chat after 300 are on.

So there are three things you can do to pre­vent being boo­ted off and having to get back on:  first, make sure you have clo­sed anything else on your com­pu­ter – i.e only Talkshoe should be up. Second, make sure no other pro­grams are run­ning in the back­ground, or will come on, like your anti-virus, and 3) ahead of time, down­load Live Pro from Talkshoe and use that. It’s more stable.

I, in turn, will be doing a stra­tegy to strengthen this call from boots.  Addi­tio­nally, if neces­sary, some who aren’t chat­ting out of the first 300 will have their option chan­ged to no-chat to allow those who came in lat­ter to do it.  It’s not per­so­nal because I don’t know who a lot of you are. It’s just sprea­ding the abi­lity into the call.

Do you take regu­lar aspi­rin? Just as we warn about swa­llo­wing your meds when you have just eaten anything with cal­cium, iron or estro­gen (they bind the thy­roid hor­mo­nes), you need to be aware that aspi­rin can have a nega­tive affect on your thy­roid levels, as well.  i.e. though it may help lower high thy­roid levels, it’s not good for your thy­roid treat­ment if you regu­larly take it.

How did we get to where we are with the FDA’s actions towards desic­ca­ted thy­roid today? Go here.

Please note: Dr. Lowe is NOT an MD or DO who see’s patients and can presc­ribe. He’s a thy­roid and fibro “researcher” with good know­ledge about T3,  fibro, meta­bo­lism, sup­ple­ments etc. Many ques­tions have been coming in which are already ans­we­red on STTM, or are more tar­ge­ted to a prac­ti­cing phy­si­cian, not a researcher. FYI.

On the heels of an infor­ma­tive and won­der­ful THYROID PATIENT COMMUNITY CALL on Talkshoe last week with Dr. John C. Lowe (see posts below), we’re going to do it again this coming Thurs­day, January 14^th.  Join us for Part 2!

Dr. Lowe is a fibrom­yal­gia, thy­roid, and meta­bo­lism researcher who has always been such a cham­pion for bet­ter diag­no­sis and treat­ment in thy­roid patients. He is Editor-in-Chief of the open access jour­nal www.thyroidscience.com as well as his own www.drlowe.com

And this time, Dr. Lowe is going to spend more time ans­we­ring  your spe­ci­fic ques­tions. Check out his web­si­tes above to get an idea what his exper­tise is, which inc­lu­des the use of T3,  Hashi­mo­tos autoim­mune thy­roid disease, iodine, fibrom­yal­gia, the tyranny of the TSH lab test, good sup­ple­ments, the FDA, and more.

So here’s your chance: think of one or two ques­tions you’d like to hear him ans­wer. Please, if you have more more than two,  narrow them down to the two most impor­tant, and keep them brief.  No excep­tions. Two max only, and brief.  Then use the Com­ments below to post them.  Be sure and check out if your ques­tions have already been asked in other comments.

I’ll be collec­ting the ques­tions ahead of time and will let him pre­view them. He wants to give you his best.

TIPS ABOUT TALKSHOE: Some repor­ted being boo­ted off and having to quickly rejoin. One step that may help is to down­load the Talk Shoe Live Pro ahead of time (takes 25 minu­tes for some) and use that soft­ware during the call, since it gives you far more sta­bi­lity.  Also, make SURE you have everything else clo­sed and/or not run­ning on your com­pu­ter at the same time you are in the Talkshoe call. I will also be chat­ting with Talkshoe sup­port and will get more ideas.

Also, don’t wait until the call occurs to men­tion your ques­tion. We found it dif­fi­cult to try collec­ting them on the Chat. Ask now!!

Yes, you can also call in live during the Call, but it’s good to first let me know your ques­tion here.

And finally, at a cer­tain point of those who join (after 300 on chat), Talkshoe par­ti­ci­pants are auto­ma­ti­cally una­ble to post on the chat. You can lis­ten, but no chat­ting. So if you want to chat, join as soon as the Call opens up, which is 15 minu­tes before the actual audio begins. Times for the audio are 9 pm Eas­tern, 8 pm Cen­tral, 7 Moun­tain, and 6 pm Pacific.

The Stop the Thy­roid Mad­ness Talkshoe page: http://www.talkshoe.com/talkshoe/web/talkCast.jsp?masterId=62603&cmd=tc

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See the blog post below those about Lowe for a very insight­ful Guest Blog Post by Amy about her role as an Under­co­ver Thy­roid Advo­cate. Below that, you can read how I was wrong about what it was like to be thy­roid­less, and seve­ral great comments.

The follo­wing guest blog post is writ­ten by Amy McMu­llen, who had undiag­no­sed & symp­to­ma­tic hypothy­roi­dism for 20 years due to the sole use of the TSH, resul­ting in mul­ti­ple health problems. She is now trea­ting per the gui­de­li­nes on STTM inc­lu­ding T3 for thy­roid hor­mone resis­tance, adre­nal sup­port, and desic­ca­ted thyroid.

I found her story below as an under­co­ver advo­cate fas­ci­na­ting,  and think Amy is caring and com­mit­ted,  in spite of severe res­tric­tions! Bless you, Amy.

I spend an inor­di­nate amount of time these days con­tri­bu­ting to a well-known online thy­roid disor­ders forum I’ll call “Thy­roid Health Forum” (not its real name).

It’s a tricky forum with dra­co­nian rules: they don’t allow you to post any links to resour­ces, talk about where you get your online labs done, inc­lude quo­tes from stu­dies, or post any names of thy­roid advo­ca­tes. You can’t use a user­name you’ve used on any other forums and you can’t men­tion using their per­so­nal mes­sa­ging system.

I’ve recei­ved a few “infrac­tions” from the ever-vigilant board “admi­nis­tra­tors” and “mode­ra­tors” (never could color inside the lines, I guess) and have been war­ned to never, under any cir­cums­tan­ces, use the words “Stop the Thy­roid Mad­ness” or any refe­ren­ces to this web­site or book in my posts.

At more than one point I was ready to walk away and just give up on it.  How can you share your expe­rien­ces when there were so many rules that see­med desig­ned to inhi­bit a free flow of infor­ma­tion, to the point of not being allo­wed to men­tion the title of a good book by name or type in the word Google?

But I would read the follo­wing posts sub­mit­ted by des­pe­rate peo­ple and this would keep me coming back to try, somehow, to help:

• “Hi, my doc­tor says my labs are all nor­mal but I’ve got so many symp­toms, I can hardly function…”
• “My doc­tor says that free T3 and free T4 tes­ting is not use­ful, that my TSH is nor­mal and that unless my TSH is high he won’t order any anti­body tests…”
• “My doc­tor says that my TSH is too low and wants me to cut back on my thy­roid hor­mo­nes, but I know I will start fee­ling bad if I do this… Help!”
• “I am taking Synth­roid but I feel terri­ble and my hair is falling out and now my doc wants me to take an antidepressant…”

You see, I was in this very same boat for far too many years. About 20 years back I star­ted noti­cing symp­toms:  fati­gue, depres­sion, mens­trual irre­gu­la­ri­ties, and dizzy spells. I went to see my doc who did the usual TSH test and when it came back “nor­mal”, presc­ri­bed anti­de­pres­sants. The anti­de­pres­sants did help, but my mens­trual pro­blems inten­si­fied and other symp­toms inc­rea­sed until I finally under­went a hys­te­rec­tomy for dys­func­tio­nal ute­rine blee­ding. Shortly the­reaf­ter, I collap­sed with heart irre­gu­la­ri­ties and auto­no­mic ner­vous sys­tem dys­func­tion in the fall of 2006.

I went to over 10 dif­fe­rent spe­cia­lists spen­ding thou­sands of dollars for medi­cal bills with no real ans­wers – just a lot of shrug­ged shoul­ders and a fibrom­yal­gia diagnosis.

It wasn’t until my mother was hos­pi­ta­li­zed and rou­tine blood tes­ting came back with a TSH of over 6 that I loo­ked again at my own thy­roid. My TSH was never above 3. I had one free T4 test done follo­wing my ini­tial collapse but, again, all tests were flag­ged “nor­mal” and thy­roid was pas­sed over once again.

But a search about TSH lab ran­ges led me to Mary Shomon’s About.com artic­les, and while she see­med to be stuck on the idea that 3 was an accep­ta­ble num­ber for the top of range for TSH, based enti­rely on the Ame­ri­can Asso­cia­tion of Cli­ni­cal Endoc­ri­no­lo­gists recom­men­da­tions, I finally found the Stop the Thy­roid Mad­ness site and lear­ned otherwise.

It was here that I lear­ned about other tes­ting like free T3, free T4, thy­roid anti­bo­dies, vita­min and ferri­tin levels and, very impor­tantly, that the TSH should be the LAST test done for diag­no­sing hypothy­roi­dism ins­tead of the ONLY test. I finally caught on to how the medi­cal esta­blish­ment has fai­led mise­rably to ade­qua­tely diag­nose and treat hypothy­roi­dism. I felt both inc­re­dibly empo­we­red and very, very angry.

I quickly del­ved into the thy­roid forums to share what I’d lear­ned and to learn from others. The first forum I found was the afo­re­men­tio­ned  “Thy­roid Health Forum”, and since this is one of the best-known, it is where many of the new­bies, like me, find them­sel­ves. There were both natu­ral and synthe­tic hor­mone pro­po­nents on the board and the advice ran­ged from very good to quite bad. I soon found there were bet­ter forums like Realthy­roidhelp and the natu­ral thy­roid hor­mone Yahoo groups that had really smart peo­ple who were happy to share resour­ces and infor­ma­tion that was truly use­ful. I spent a lot of time on these and lear­ned a great deal.

But for some rea­son I couldn’t seem to leave the “Thy­roid Health Forum”. The peo­ple who stum­bled on there see­med so lost and I felt com­pe­lled to impart what I had lear­ned to them. I would offer alter­na­ti­ves to the synthe­tics and explain why natu­ral desic­ca­ted thy­roid (NDT) was a supe­rior treat­ment option and, more impor­tantly, that they did have an option for their treat­ment, des­pite what their doc­tor told them. I’d relay what I had lear­ned from other boards about access to NDT during the shortages.

When I figu­red out I had adre­nal fati­gue and later thy­roid hor­mone resis­tance as a result of being undiag­no­sed for so long, I star­ted rela­ying infor­ma­tion about these issues to the many who were having dif­fi­cul­ties get­ting opti­mi­zed on their hor­mone repla­ce­ment the­rapy. I found it to be both rewar­ding and enor­mously edu­ca­ting for myself as I would spend time researching ques­tions that were asked about sup­ple­ments, lab tests, and stu­dies. I was not allo­wed to post links so had to sum­ma­rize things I had lear­ned and this taught me even more. The main mes­sa­ges I pushed were (and are):  get the right labs done, learn how to inter­pret them correctly, be your own advo­cate, know your treat­ment options, and don’t impli­citly trust doctors.

I will con­ti­nue to con­tri­bute what I’ve lear­ned to the “Thy­roid Health Forum”. So far I’ve mana­ged to fly under the radar and play, howe­ver grud­gingly, by their rules. I figure if I can get just one or two peo­ple to ques­tion the pre­sent thy­roid cli­ni­cal gui­de­li­nes, as writ­ten by our friends at big pharma, I’ll be more than satis­fied. I actually believe that by get­ting good infor­ma­tion out there to as many suf­fe­rers as pos­si­ble, we may create a grounds­well of peo­ple who will no lon­ger accept being dis­mis­sed as depres­sed com­plai­ners by their health­care pro­vi­ders. And this is one more way we can help enact real change to the currently abys­mal medi­cal prac­tice of thy­roid diag­no­sis and treat­ment. Well worth it in my book!

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Latest news from RLC: Ship­ments of Natu­reth­roid are begin­ning Mon­day, January 4^th and the first two weeks with bac­kor­ders going out ASAP.  Medco should have some by the end of January. Their Patient Infor­ma­tion Line: Naturethroid/Westhroid: 877 – 600-4752

Thy­roid  patient guest posts can be read about here: /writing-a-guest-blog-post-on-sttm/

Want to honor someone who has hel­ped you?? See the blog post below and thank someone.

NOTE: if you were recei­ving email noti­fi­ca­tions about these posts,  the com­pany doing them is out of busi­ness. Ins­tead, use an RSS Feed.

There was a time when I thought being hypo without a thy­roid was really no dif­fe­rent than being hypo with one.  Hypo is hypo.

But I was wrong. There really is a dif­fe­rence in our jour­neys – even if we both end up with hypothy­roi­dism — and four strong ones:

1. It’s no pic­nic to lose one’s thy­roid. Sur­gi­cal remo­val, called a thy­roi­dec­tomy,  can come with neck sore­ness, loss of one’s voice, and other com­pli­ca­tions. inc­lu­ding the loss of parathy­roids.  Treat­ment with RAI, or Iodine 1 – 131 to kill the thy­roid, has it’s own life­long side effects, inc­lu­ding gas­troin­tes­ti­nal issues, paro­tid sali­vary gland pro­blems, and more.  A good web­site about the con­tro­versy of RAI is atomicwomen.org.
2. The stress of sur­gery and/or RAI can do a num­ber on one’s adre­nals. I sus­pect that there is a high per­cen­tage of those who had sur­gery and/or RAI who also have adre­nal fati­gue with it’s night­ma­rish side effects, whether simply from the phy­si­cal stress of remo­val and/or treat­ment, or having a Synth­roid, T4-only obses­sed doc­tor.  Being on T4 is the num­ber one pre­dic­tor of adre­nal fatigue.
3. Some have a uni­que anguish about their vul­ne­ra­bi­lity. No one can live without a thy­roid.  And that thought with the abso­lute life­long depen­dency on thy­roid meds is not a com­for­ta­ble state.
4. Life long regret can be huge. Many patients came to rea­lize, after remo­val, that they may not have nee­ded the remo­val at all if they had known about the fallacy of the TSH lab test, or the idiocy of T4-only meds, or poten­tial bene­fits of iodine, or natu­ral desic­ca­ted thy­roid like Natu­reth­roid, com­poun­ded, or Erfa Thyroid.

Read the latest per­so­nal and gut-wrenching blog post by thy­roid can­cer Stepha­nie Buist, who is thy­roid­less after treat­ment for thy­roid can­cer nearly 10 years ago.  Also see the Talk to Others link below to find the Thy­roid­less yahoo group.

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Curious what’s going on with Natu­reth­roid or Westh­roid pro­duc­tion and avai­la­bi­lity? RLC Labs has a Patient Infor­ma­tion Line you can always call for the latest infor­ma­tion on Natu­reth­roid and Westh­roid avai­la­bi­lity: 877 – 600-4752.

Want to write a post for the STTM blog?? Begin­ning in 2010, I will be revie­wing and accep­ting “thy­roid patient guest posts” on the STTM blog in bet­ween my own. You can read about it here: www.stopthethyroidmadness.com/writing-a-guest-blog-post-on-sttm/

Want to honor someone who has hel­ped you?? See the blog post below and thank someone.

NOTE: if you were recei­ving email noti­fi­ca­tions about these posts,  the com­pany doing them is out of busi­ness. Ins­tead, use an RSS Feed.

Let me tell you, there are a LOT of indi­vi­duals — those I know and those I don’t — who give their blood, sweat and tears to help thy­roid patients with feed­back and infor­ma­tion to help them feel bet­ter in their treat­ment, and with no noto­riety that I or a few others get.   i.e they do what they do without a huge or far-reaching web­site like STTM, or a well-known blog, or a popu­lar book, or other ways a few of us get well-known.

And in my mind, these indi­vi­duals deserve praise and recog­ni­tion. They are just as impor­tant in their direct one-on-one influence and help­ful­ness as those of us who gai­ned public recog­ni­tion.

Where are these peo­ple? They are those who own and/or mode­rate and/or con­tri­bute often to thy­roid forums, such as Debo­rah and her mods on Real Thy­roid Help, and Pam and others on Low Carb Friends.

For help­ful Yahoo groups, there is Linda aka Top­per of The Thy­roid Sup­port Group,  Sam and her mod Darla of the Thy­roid­less group, Vale­rie Tay­lor and her exce­llent and patient mods Diane and birrdyy of NTH Adre­nals and RT3/T3 group,  Darla, Linda, Meleese and Pat of NTH,  Jan Nathan with her Texas group plus other state groups.

There are many who volun­ta­rily hel­ped others in the last few years who aren’t as active any­more, but still deserve praise.

And there are many other indi­vi­duals who own, mode­rate, or give help­ful feed­back to patients on forums and yahoo groups I could men­tion, but I don’t know their names or am just dra­wing a dis­trac­ted holi­day blank.  I also noti­ced seve­ral thy­roid can­cer groups.

So, if you want to recog­nize an indi­vi­dual who has hel­ped you and others but is less publicly well known, use the Com­ments below and give 1) their name, 2) what group or forum if appli­ca­ble, and 3) spe­ci­fi­cally how they hel­ped you on your path in fin­ding a much bet­ter thy­roid treat­ment pro­to­col and good health.