I have been a member of this fabulous board since Nov. 2006 when I first found out I had 2 thyroid nodules. Since that very first posting, I cannot begin to tell you all how much this board has helped me with my thyroid issues from detection to surgery to medication to acceptance! This is something I will always hold dear to my heart.
I view our Thyroid Community as a fence .. the fence we build is built post by post and until every post is answered our job will not be done. Through the sincere efforts of everybody in this community we WILL BUILD THAT FENCE and as we do .. WE WILL HELP EACH OTHER and when we are having a good day maybe give support/lend a hand, tell a joke -- and when we are having a bad day, perhaps, reach out for support & know we will get support from our friends.
It is the uniquue dynamics of our own Community we see on this board day in and day out that sets us apart .. reminds us WE ARE NOT ALONE and makes us a true, solid community dedicated to helping each other. To me, that is something very special and very proud to be a part of .. and, I think you may feel the same way, too!
So to all of us on the Community ... pat ourselves on the back for a job well done .. a job in process .. lending a hand ..helping each other, and in the process maybe having some fun!
As your Co-Community Leader my door is always open .. I check my messages and the board many times a day .. any question, suggestion or concern is never too big or too small .. If I don't know the answer, I will try my best to find the answer for you and/or pass it along to MedHelp directly.
We all have one thing in common -- Our Community has thyroid concerns. This is what brings us together and will keep us together ..... KEEP UP THE GREAT WORK!!!!
Cheryl
I am here to share what I know and offer support.
I also appreciate getting feedback and support back when I call on it too.
Also - I am here now to continue giving AR a hard time!!! LOL
(just joking people) He is my rock of information.
Don't ever leave! This place could never be the same without you. I'm not being a creep I'm just telling it as it is. You guys saved me at the beginning when I was new and youn still save me now on bad days!
I'm here to be Stella's punching bag. It's good therapy for her, and I get a buck a punch, so...I'm getting rich! LOL!!
That's a joke. Stella's a sweety. ;-)
I came here in May '07, with a little bit of knowledge and a lot of anger. I'd like to think the balance has shifted between the two. I'm still not happy with my situation, but thanks to the members here I feel like I am part of a group that understands and actually cares.
I've learned a lot, and I still have much to learn. This board, of the many I have investigated, perused, or joined, is by far the best I have found.
There are experienced members who collectively have been through just about every type of experience a thyroid problem can bring into your life. The traffic is brisk enough that most questions get several responses, which is nice. With all the brain fog floating around, the more heads involved, the better. LOL!
Plus, I get to tell lame jokes all day long. :o)
Once in a while a question gets missed, often because the member with the answer hasn't seen it. We all have different areas of knowledge and varying experiences. If your question does not get answered in a day, find it on page two and bump it back to the top of page one so it can be seen again. Just say "bump", or, "anybody got a thought on this?".
It's not that you're being ignored. It's just that the person with the answer didn't see it the first time around.
I still check in with this forum to see if I can help others who suffer from the rare side effect of low calcium after a total thyroidectomy. I had a TT in July 2006, and my parathyroids are finally starting to work normally!
Through a correspondent I met on the forum, I was inspired to ask my doctor about cutting down the meds that were helping me absorb more calcium but inhibiting my parathyroids' ability to function on their own (thanks Deb).
It's great to feel that one is not alone on this journey.
I am so thankful for this community. It has given the only insight into my crazy thyroid mess. THANK YOU THYROID COMMUNITY!
I, too, am so very thankful for this forum. I live alone and have no one to help me through what has become a very difficult time in my life, but this forum and the people on it have been wonderful. They've answered my questions and made me feel not so quite alone in this. It's great to have someone to talk to and a "shoulder to cry on". THANK YOU!
I seriously do not know how I would have coped without my fellow thyroidians help.The way they understand, and accept and know what I go through, because they go through it too, has been unbelievable. I am so glad that Medhelp.org turned up near the top search when I googled Thyroid Forums. I have learnt so much about my own condition and am making it my goal to help those who feel confused and uncertain in their new diagnosis.
I remember feeling uncertain. I really am a private person and don't like 'forums' as such. This one has become my new home and the family I have here now, know me better than my own family.
So rock on in and join us...we really are a very kind and warm bunch of endocrine challenged people!
I am glad I went back to view the posts.
AR - "You want to go??" - (just kidding my Hashi/Graves dude)
Cheryl and Stella,
This community has helped me in lots of ways since I was lucky enough to find it. I can ask a question and much count on getting an answer, opinion or someone might just say "hi". I feel like the people in the community have become friends. I visit daily and keep up with what's going on and worry when a member is facing a tough situation or isn't feeling well. The most important thing I've gained is the knowledge that when my time comes to face bigger thyroid challenges, the community here wil be there for me.
Thanks for all you do.
Sandy
To the Thryroid Community....
I want to thank all of you for all the help that you gave to me.
I feel lucky to have found this site. I came on for a few days and just read what everyone esle posted. Then I got brave enough to post my own question.
I am not as knowlegable as some of the others on this board, but I try to have input where I have a little knowlege. I enjoy trying to help others, knowing that others have helped me.
This thyriod community is great for anyone who needs the great thyroidians assitance.
Take care Cheryl and Stella, The piece was well written and to the point.
Terri
Glad I found this board............never realized how complex it all is..........
It is good to have such a wonderful place to come to for information and support.
To All
I am so very grateful that I have found this forum. Since finding 2 nodules through ultrasound, I have been frightened and stressed out.. BUT finding this forum has given me a great deal of information and support that I feel empowered with knowledge. I too never realized how complex it all is..the human body is an amazing!
Thanks
This community has been a God send to me. I do so appreciate the support and knowledge I have gained from the members.
I have received more support, emotionally speaking, than I have from my own family.
Words can't describe what it means to have people understand what you are going through, and can totally relate. It validates the illness, and makes you feel less "crazy."
This disease can do that just that to you, and having someone to help you through it, give you some words to help you be able to make it through another day....
Also to be able to lift someone else's spirit and help them carry their load, is a wonderful thing too.
This place is a blessing to me....and each of you here, are as well.
I am glad that even after a busy few weeks of moving kiddos from place to place, I can still come back and read up on the forum. I am always learning new things about Hashi's as it relates to me and my life and I want to thank you all for making it easy to keep up. Even if I don't make a post for a long time, I still come back from time to time to just read. Thanks!!
Just checking back in as I have been away for a month with no computer. This forum has been a life saver for me and you two especially. I am glad you have taken the responsibility that you have as you are good and expend a lot of energy for all of us to draw upon. Thank you for that. This seems to be a longer recovery that I expected it to be. I am waiting for the results of my blood tests taken Tues. I have had Vit. D therapy and also am waiting for those results. Things are better, I was able to go away and that is a big step so not complaining but seem to be still recovering from the thyroid gone wild and subsequent steps to quiet it down. Thanks for all you both do and all the rest who take the time to post. love linda
A lot of you won't know who I am, as I haven't posted here in quite some time. Most of the reason is because I feel really good now, and don't come to the forum much. However, I just had my one year anniversary of my TT on August 6th, and it made me stop and think of where I was a year ago.
My journey was very scary. First of all, I was diagnosed with papillary carcinoma in late June. This was a huge shock to me. The only thing I knew about the thyroid gland before that, was that it controlled metabolism. Oh boy, did I find out that it does much more than that thanks to some research and many of the wonderful people here on the forum.
Then came my surgery in August. I had never had surgery before, so imagine my anxiety! I was assured that the surgery was fairly easy and recovery was fast. My surgery lasted 4 hours and when I came to, I found that I couldn't swallow anything liquid without choking. After a visit to the ENT doc, they found that neither vocal cord was moving - hence my issues. I had a hard time talking, breathing and swallowing. This lasted for a month, and was absolutely horrible and scary!
Notice my picture.....one of my dear friends here on the forum gave me that, as I found that if I took some water into my mouth, then bent at the waist - I could actually swallow with minimal choking. Hence the drinking bird. The humor definitely helped me, and I don't know if I'll ever be able to get rid of my picture because of it!
Six weeks later came the LID and RAI. Thank God my vocal cords were a bit better, because I quickly found that I didn't like being hypo. I don't think I've ever felt as bad as I did those few weeks! My TSH had climbed to 154 by the time I had my treatment dose. It took about a week on the meds to feel halfway human again.
I pretty much lived on the forum at that time, and there are SO many people that supported me and got me through a very difficult time. I wanted to let you know that I appreciate each and every one of you! It would have been a lot harder going through it without you all.
I'm happy to report that thyroid wise, I'm feeling great. In fact, sometimes I forget that I don't have one! My levels are right where the doctors want them for cancer suppression, although not so hyper that I feel bad. I got my energy back, and I'm amazed at how my hair is growing back! (this after having to clean the drain at least twice during my shower). I know I still have a long road ahead of me, but at least it's less bumpy. For now. My last visit to the ENT, I was told that one vocal cord is at 100%, the other is about 85%. The only time I notice it is when I sing and try to hit a high note. I'm sure there are several people that are thankful for that!! ;-)
I go back in October for my yearly WBS, and luckily my insurance has approved the thyrogen shots. I'm so very thankful for that! I hope and pray that nothing is found, but know that I still have a few years to go after that. It sure helps knowing that if I have any questions, or just need emotional support - this forum is here.
Again, thanks to all who helped me through a rough time. I'm really going to try to be on the forum more, and post when I can be of some help. I know how much it meant to me, and I can only hope to help others the same way. This forum is wonderful and the people here are great. Thanks so much!!!
Lori
I just found this board last night and I am so thankful! Reading some of the past posts has made me feel a bit better that I am not completely alone!
Kat
Welcome new friends (and big {{{{WAVE}}}}} to the "old" ones)
This forum has been such a wonderful place to chat, vent, and support. There is a lot of great info out here.
Between work, all my other physical problems, and "life" I'm not on the board as much as possible *BUT* if anyone has any questions about thyroid cancer, please, please, PLEASE send me a note or a PM.
Here's a little bit of my story:
Had an unrelated CT scan in 2003. They found a small nodule on my thyroid and encouraged followup. My wonderful internal medicine specialist (I MISS YOU "DOOGIE"!!) ordered a thyroid ultrasound and labs. Labs were normal but the nodule in the right lobe was complex. I was able to see the ultrasound and could see that, although it was small (5mm) it was irregular and made of solid and fluid. After some research and talking to "Doogie" (not his real name - he's in good doctor protection) he steered me to a *wonderful* surgeon that I call St. Theresa. I decided to skip the FNA and just get the lobe out. Down side was that they didn't discover the cancer (papillary carcinoma) until I was in the recovery room so I only had one lobe out.
A few months after that, my youngest sister was in a minor car accident. They found a thyroid nodule while taking her chest x-rays. She had a FNA which was benign but decided that it "didn't feel right" so she had the surgery anyway. She had papillary carcinoma in both lobes and in her lymph nodes. After that the other three sisters all ran out and had ultrasounds - all had nodules. One opted for an FNA (also benign) but opted for the surgery anyway - hers was also papillary carcinoma. All had surgery (with St. Theresa)
That is four sisters and me: four of us with papillary carcinoma and the other had atypical (precancerous) nodules - all within about 9 months.
I *ran* out and had ultrasounds performed on my two children's thyroids. Son was fine but daughter had some very large nodules. Hers ended up also being precancerous and one was compressing her jugular.
Because of all of this I opted to have the other lobe removed just 12 months after the first surgery. It was benign but I'm glad that I did it because two years later I had a recurrence (in my thyroid bed) and had RAI.
As of last fall, I have a small spot in my head and some uptake in my liver (which scarred the bile ducts but that's another story).
My youngest sister had three recurrences and doses of RAI (one showed spread to her breasts). She also had a beautiful daughter after her last treatment.
I've also had some complications including arthritis (RA and osteo), ovarian cysts, bone thinning, and scarring in the liver (to name a few) but I'm alive!
Yeah, we are the family with the "non-hereditary" form of thyroid cancer. Lucky us.
So, if you have any thyroid cancer questions, I'm no medical expert - just becoming an expert patient. :-(
Oh. One word of advice: don't take any cr@p from doctors (something that many, many of us have to learn along this journey).
Feel free to ask away and huge HUGS to all who are here.
Utahmomma
papillary carcinoma '03
recurrence and RAI '06 and probably '08
three sisters with papillary carcinoma (one with three recurrences/RAI)
one sister and a daughter with precancer
This forum has been so supportive and comforting in my darkest hours. I love to drop by when I can and put my 2 cents worth in and replace the good that has been given. Its also good to stay connected as a reminder. Its so easy to slip back into an unhealthy lifestyle.
4/07 - Physical finds nodule
7/07 - Got into see an Endo (wait and see 3 months)
10/07 - New ultrasound (6 months after last one) finds significant growth.
11/05/07 - Biopsy
11/9/07 - Received call with diagnosis (Cancer).
11/29/07 - TT (diseased on both sides, nodule attached to trach and one of 5 lymph nodes involved).
1/3/08 - RAI
1/10/07 - Whole Body Scan (shows only lightup in neck ~ WOO HOO). Could be worse!
3/17/08 - Post Endo appt with blood test results (tsh is .044). T4 i elevated at 1.84. Meds lowered from 150 to 137.
7/2008 - TSH is .03, T4 is 1.62. All good now for Cancer suppression.
Ran across this info, which provides a lot of details about the the poor correlation of patients' symptoms and need for medication, to their TSH levels.
http://www.altsupportthyroid.org/tsh/tshmedrefs2.php
Thought this might make a good addition to the Health Pages.
Hi all just learning how to work this site am i doing it right?
kelly
Hi Blonde!
Yes, you are doing it right! You can also post on an existing thread, or start your own! Welcome to MedHelp!
Hi you guys, I just wanted to thank you all for helping me get as far as you have. I try and talk to family members about this brain fog, and they just laugh at me. I was talking to one of my best friends tonight and she doesn't think I am so crazy. I am aa believer that we will all get better. My fog is definately on its way to lifting now, so I am having some clear clear moments, and then back. I have my endo appointment soon. Hopefully he won't base how I feel on numbers, but by looking at me. I know my anxiety will calm down once I am on the right dose. So thanks again.