December 29, 2009

Thyroid is Missing From Human Throat
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.

**************************

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.

  • 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.
  • The extre­mely hip and sophis­ti­ca­ted STTM t-shirts are half price! Great BUMPER STICKERS, too. Spread the word – YOU may make a dif­fe­rence in someone’s life.
  • 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.
  • Keep infor­med of each live Thy­roid Patient Com­mu­nity Call on Talkshoe by sig­ning up as a follo­wer.

This entry was posted on Tuesday, December 29th, 2009 and is filed under hypothyroidism. 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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16 Responses to “The agonies of being thyroidless”

  1. Nancy said:

    Dec 30, 09 at 4:25 am

    I pos­ted this link to my Face­book page as after rea­ding her blog, it was as if she was lea­ding my life in so many ways and I am hoping it helps my loved ones to unders­tand what life is like for us that have had their thy­roids remo­ved. I can’t thank you enough!

  2. Muna said:

    Dec 30, 09 at 6:13 am

    Thank you so much for addres­sing being “thy­roid­less” and for pos­ting the link to Stepha­nie Buists’ site. I unders­tand what she is going through to some extent– I have no thy­roid, but my diag­no­ses of can­cer on the ope­ra­ting table tur­ned out not to be can­cer 3 weeks later-(Thank God) but I lost my thy­roid any­way. It hasnt been a pic­nic and I appre­ciate you directly addres­sing this issue. While strug­gling with hypothy­roi­dism post sur­gery I had a hard time unders­tan­ding what was going on and my thin­king pro­cess was totally mes­sed up– I knew I was hypo, but wasnt sure if everything I was rea­ding applied to me because I didnt have a thy­roid. I know it seems obvious, but when your thin­king pro­cess is mud­died with “brain fog” the clea­rer the bet­ter!! Thanks so much for your efforts and hard work

  3. Marilyn said:

    Dec 30, 09 at 8:38 am

    I had RAI almost 9 years ago now, for Gra­ves Disease. I was on synth­roid for 5 of those years. The first 2 years where good and the synth­roid was good for me. As time whent on and more and more of my thy­roid died I star­ted to feel more and more hypO even though my labs loo­ked good. I beg­ged and plea­ded for Armour for 2 years and finaly had to switch doc­tors to get it. When I finaly got on it, I star­ted out slow and wor­ked up and I felt great, until the rea­for­mu­la­tion ( that another story).
    I really hate having to rely on labs and meds, for the rest of my life, just to be able to live. Last year my hus­band chan­ged jobs and we have been with out health insu­rance for over a year now. I have no persc­rip­tion, as it ran out, I can’t see the doc, not enough money, and I can’t get labs, same issue there. SO I have to strug­gle to find meds that I need. I can’t use Desi­ca­ted thy­roid like I want to, because I can’t find it with in a rea­so­na­ble price for the amount I have to take. IT is a monthy strug­gle for me and one that I worry if I am ever going to be able to afford next months meds. It is scary to think that if I can’t afford them for what ever rea­son, then I will not exist and be here for my young chil­dren.
    Now on to the sto­mach issues, I can’t aborb potas­sium from my foods any more, so I have to take a persc­ri­ton that is easily abor­bed and I have to take it often. On top of that I have and adre­nal issues, I make to much aldes­trone whitch flushes potas­sium on top of everything. Nothing like telling some on that tells you that you should drink more water, that you can’t because it will dehy­drate you more. Kind of funny to say it too. I have to make sure that what ever I drink has potas­sium in it, For some rea­son if it is liquid form I do ok with it. THe body is a mys­tery and some times mine is to me too. SO far I do not know if the RAI effec­ted my parathy­roid glands yet. I need to get that chec­ked one of these days. I also need to have another aldes­to­rone test done again and see if there is something that can be done about having to much so we can balance things out.
    Right now because I am on synth­roid and syto­mel, my hair is falling out and I have all the other hypO symp­toms even though I am takeing the exact amount that I would be if it was Armour I was taking. It is hard to have to live like this. I am only doin git until I can get some more desi­ca­ted thy­roid. I rather liked fee­ling almost nor­mal rather than drag­ged though the med day in and day out.

  4. Michele said:

    Dec 30, 09 at 12:46 pm

    I am so gra­te­ful to see an article pos­ted about being without a thy­roid. I had sur­gery 3 years ago due to can­cer being found in my thy­roid. While I am now can­cer free, the sur­gery has left me with a dama­ged left vocal cord due to it being seve­red during sur­gery. My voice is gone, redu­ced to a soft whis­per. I feel aban­do­ned by the medi­cal com­mu­nity in my area, fee­ling invi­si­ble and unheard in large groups.

    I now have to worry about res­pi­ra­tory pro­blems, due to fluid get­ting into my lungs from just drin­king water.

    My medi­ca­tions are always being chan­ged. My brain fog and exhaus­tion make peo­ple who don’t know me think I am an airhead…I also now have adre­nal disease and vita­min D deficiency.

  5. Enrique said:

    Dec 30, 09 at 11:14 pm

    I had my thy­roid ‘nuked’ 18 years ago and I will always regret it. If only I had the infor­ma­tion I have today back then… I took Synth­roid after that until 2 months ago when iI switched to T3 only the­rapy to get rid of my ele­va­ted RT3. It has been tough switching from Synth­roid to T3 only but I’m han­ging in there. In 1998 I weighed close to 300 pounds and switched to a raw vegan diet and went down to 170 pounds. My doc then cut my Synth­roid dose in half based on my enor­mous weight loss. Bet­ween 1998 and now my weight fluc­tua­ted bet­ween 180 – 200 pounds. This year it finally caught up with me that all those years on Synth­roid have affec­ted my adre­nals and crea­ted a high reverse T3 pro­blem which I am now trying to correct. I also found out my vita­min D3 was almost zero! I’m so thank­ful for this great web site and Janie’s book. Hope­fully more and more peo­ple will be able to make well infor­med thy­roid treat­ment choi­ces because of Janie’s hard­work and acti­vism and avoid get­ting their thy­roids butche­red by incom­pe­tent doctors.

  6. Sandra said:

    Jan 01, 10 at 8:21 am

    Yes­ter­day I read Stephanie’s page and even though I know what I know about why I feel the way I do (still on synthe­tic since 1994) with the bles­sing of this site and thy­roid­less group, I felt so relie­ved that she put it into words what this jour­ney is all about, it somehow felt like a good friend put­ting their arms around me and saying, it’s ok San­dra, I unders­tand, you have a right to be pis­sed and hate what is done.

    I was a body buil­der for 10 years and an avid health nut. I even wan­ted to be a police woman but didn’t pass some of the tests (pre can­cer). Now I am lucky to get 4 days of wal­king 30 minu­tes in without fee­ling drai­ned and done in. When I switched careers from truc­king to a kitchen desig­ner without any expe­rience 6 years ago I was so con­fi­dent and posi­tive. Now I have loads of expe­rience and doubt myself all the time!

    But here is the big one for me. I always, always thought I would have chil­dren. I am now 46 and met my one and only hubby 10 years ago. I wasn’t in a rush then at 36 , I was fee­ling ok and thought we can enjoy the rela­tionship for a bit, but then.….. it all went down hill slowly. The thought of sta­ying up at night with a new­born sca­red the beep out of me.

    I too had RAI and suf­fer from serious mul­ti­ple food sen­si­ti­vi­ties, can­dida, and all the symp­toms that go with that. I work full time and have to make all my food that is glu­ten, dairy and sugar free and rotate all my foods every four days . I can’t even enjoy a treat over christ­mas as the sugar makes me crash and burn.

    I wish that ever­yone who is searching for ans­wers does not doubt one fact on STTM, does not doubt what these won­der­ful woman and men are saying and does not put their faith in their MD or even their natu­ral doc­tors if they tell them anything differently.

    Is it me or is it a coin­ci­dence that all these inc­re­di­ble, caring souls who have dedi­ca­ted their lives to this cause also are the ones who have thy­roid disease, can­cer etc. Perhaps it has been said before, but do we all share a com­mon trait that we have not always put our­sel­ves first in a healthy way. I know for myself that is the case and it is one part of this jour­ney that has taught me when to say NO because now I now have no choice. It is a very tough way to learn this les­son but I do get it and now I am thank­ful to not feel guilty a little less.

    I have the ups and downs and today is an up day, so I don’t mean to deny all the pain that is there but I guess the spi­ri­tual belie­ver in me belie­ves that I will get bet­ter and I will have my life back even if it is not in the way that I always drea­med, just different.

  7. Sandra said:

    Jan 01, 10 at 9:04 am

    Oh I for­got to men­tion that if you are trying to figure out is you should let them take your thy­roid and put you on synthe­tic thy­roid hor­mone you had bet­ter be pre­pa­red to spend thou­sands of dollars on natu­ro­pathic doc­tors who will look for every other thing to be the pro­blem with your health and not your thy­roid. Prior to fin­ding this site only 6 months ago I have spent the last 4 years going to 6 dif­fe­rent natu­ro­paths and have exhau­sed our savings.

  8. Abigail said:

    Jan 03, 10 at 11:05 am

    Thank you for the link to the blog! I had no clue there was an alter­na­tive to sur­gery for remo­val of metas­ti­si­zed thy­roid can­cer. What would have been the alternative?

    I had sur­gery less than a year ago and treat­ment with synthoid left me fee­ling horrid. My doc refu­sed to give me anything else, so I switched to an ND. The ND gave me cyto­mel (when I asked for armour he said let’s first figure out how much cyto­mel works for you– on top of the synth­roid– and then we’ll do the con­ver­sion from cytome/synthoid to armour)

    Then I tes­ted myself for RT3 and it was high. So I got myself onto cytomel-only treatment.

    As I can­not raise too much cyto­mel at a time (my cor­ti­sol reser­ves are low, and I’m wor­king on that, taking HC) I’m under­do­sed on cytomel-only treat­ment, until I bring my dose up to ade­quate levels.

    Now my TSH is above 40 and surely a good time to do another iodine-uptake body scan :)

    TSH is sup­po­sed to be sup­pres­sed, they say. I won­der if they’re right. At this point I don’t know what to believe.

    With a high TSH, they say, any remai­ning thy­roid can­cer cells can reproduce.

    So how does one treat thy­roid can­cer natu­rally?
    I’m glu­ten free, sugar free, dairy free, taking 35 mg. cor­tef, and flu­dro­cor­ti­sone for low aldos­te­rone, and cytomel.

    Yes indeed, I have lear­ned the hard way to finally put myself on top of the list of priorities.

  9. Abigail said:

    Jan 03, 10 at 11:18 am

    I also want to men­tion, when I was on synth­roid, I had symp­toms I used to have while on glu­ten. I chec­ked out synthroid’s ingre­dients and glu­ten was not lis­ted. Yet my endo at the time said it does con­tain small amounts of glu­ten. He tes­ted my blood for anti­glia­din anti­bo­dies and trans­glu­ta­mi­nase anti­bo­dies and indeed they were mildly ele­va­ted due to the small amount of glu­ten in the synth­roid. So he gave me levoxyl ins­tead. Same crap. A short time later I fired this endo for refu­sing to recog­nize my adre­nal fati­gue and for refu­sing to give me cyto­mel, and for telling me my blood­work and ACTH were fine, when the labo­ra­tory per­son­nel indi­ca­ted my levels were NOT fine.

  10. Linda said:

    Jan 04, 10 at 11:37 pm

    Abi­gail, Since it has not been a year out from your RAI, a body scan will not tell you anything at this point. It can take up to a year for the old can­cer cells to die off. What would be pru­dent howe­ver, is an unsup­pres­sed (hypo) Tg with TgAb. If you have no anti­bo­dies and your Tg is not rising, that is good. I am a 44 year thy­roid can­cer sur­vi­vor who never scan­ned more fre­quently than yearly. You are doing the right things. You can read more here: http://www.naturalthyroidchoices.com/ThyroidNutrients.html

  11. Abigail said:

    Jan 05, 10 at 8:05 pm

    Linda, thank you for pos­ting. My doc seems aggres­sive. Pos­sibly because it was stage 3 can­cer?
    He said that because of my young age I will get the most aggres­sive treat­ment so as to avoid recu­rrence. So I got one dose of 150 radioac­tive iodine in June 2009.
    I don’t want to go for scans at all. I hate them. I hate thin­king of thy­roid can­cer. I just want to get my energy back and move on.

    Has anyone ever felt ‘back to nor­mal’ after remo­val of thy­roid? Depends if adre­nal fati­gue is an issue?

  12. Alyce said:

    Jan 07, 10 at 10:40 am

    Dear Abi­gail,
    Yes, It does get bet­ter over time. I had mine out at 24 and am now 42. I too HATE doing scans! They stress me out so much. I finally had to take an Ati­van before hand because I would lie there on the table sob­bing like a baby.

    I too find myself wan­ting to block out the whole can­cer thing. I mostly focus on wor­king toward fee­ling good. After being on Synth­roid for 15 years and not kno­wing why I felt so bad. My brother in law told me about natu­ral thy­roid medi­ca­tions and it’s been life-changing. I can’t speak highly enough about how much bet­ter I feel on them.

    It’s very impor­tant to find a doc­tor who is willing to make recom­men­da­tions based on how you feel not just what your labs say. It took a long time to find her but it’s been well worth it. With the help of a good doc­tor, I’m fee­ling on top of the world.

    Best of luck to you in the future.

  13. Linda said:

    Jan 08, 10 at 9:23 pm

    Hi Abi­gail,

    Yes adre­nals need to be sup­por­ted well so you can tole­rate the T3. Perhaps you need more HC? Are you on any of the sup­port groups?
    http://www.stopthethyroidmadness.com/talk-to-others
    Since you are hypo now, it is the opti­mal time to check your Tg. A scan before a year out from a treat­ment dose of RAI has the poten­tial to make you RAI resis­tant. A good radio­lo­gist will know that it can take up to a year for old can­cer cells to die off. There is so much in that sen­tence that pro­bably is not clear to you and it is hard to dis­cuss in this for­mat. Ask Janie for my email adress if you want to dis­cuss this further.

  14. Abigail said:

    Jan 11, 10 at 10:31 pm

    I have tes­ted posi­tive for TPO anti­bo­dies. I will request a TG anti­bo­dies on my next blood draw. Is that thy­ro­glo­bu­lin antibodies?

  15. LindaD said:

    Jan 16, 10 at 8:42 am

    Yes, TgAb is thy­ro­glo­bu­lin anti­bo­dies. :-)

    If you are posi­tive for TgAb, then your Tg will not be a relia­ble tumor mar­ker for thyca. :-(
    Linda

  16. Soni said:

    May 05, 10 at 12:02 am

    I was for­ced by my endo to have RAI done for gra­ves disease almost 2 years ago.
    Since then ive been on Levothy­ro­xine (T4) and have gai­ned about 15kg.
    I work out every day with a trai­ner aswell as doing car­dio by myself. I recently took a week off work doing exer­cise for 5 hours a day for 6 days and have mana­ged to lose a total of zilch. I feel so frus­tra­ted and totally regret ever having done RAI. My doc­tors in the uk refuse to put me on anything but T4. I have now orde­red Cyto­mel from an online web­site and was won­de­ring if anyone here had expe­rien­ced weight loss with this?

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