This forum

[dart frog]

I dont expect many of you to read this post but I just wanted to say something.......

I found out Feburary 2007 I had a thyroid problem. I was like what??? Whats a thyroid and where is it at?? So I did what people do this day and age. I turned to the internet. I looked through...oh I dont know.....20 maybe 30 websites. You know what? I was more confused then ever . All I found were sites that were cold, techincal, impersonal...and they scared me really bad.

Then I found this site. The first time I was here I saw posts that had weird words, TT, RAI,TSH,FNA...and I was like WHOA..I need to back track and try to figure this out. So I did. I went back 8-10 pages and slowly began to understand what those weird words meant.

I also found people who were as confused and scared as I was and I knew I had finally found someplace to help me.

We all know that symptoms and problems with thyroids can change from day to day. I am still amazed at the number of times I would come across a post where that person knew EXCATLY how I felt because they were going thru the SAME thing!!!!!

I wanted to read more and more posts because...wow...these people are ....ME

I WANTED to hear about the good days, the horrible ones, great news about biopsies, sad test results, problems with drs, fears about surgery, levels finally balanced, families being great, families being rotten......those posts gave me ways and ideas of handling my own problems as they came up.

If this forum was just about tests results numbers ( stats), or ONLY good things...then...would someone explain to me what good it would be???  How many of us would feel like complete and TOTAL failures because we cant do as well or be as "normal" as those perfect posts?

If I upset or scared anyone on this board....either a regular or a newcomer then I am SO SO sorry that I made you feel that way. BUT if my problems or lab results, or problems with my drs...etc.. can help just ONE person.....if ONE person can go ..."wow she has the same problem I do!"...or " hmmm maybe thats what my problem is "........then its worth it dont you think?????

Everyone....and I do mean everyone that has posted on this board has had their ups and downs....the drs have told them good news AND bad....and if they/we didnt need support for one PROBLEM or another concerning our thyoirds......then we wouldnt be here.............




would we?

[ChitChatNine]

Yeah ......you hit the nail on the head.  I HONESTLY think this board has helped me so so much that I would not have accepted or healed as fully as I have from both my Thyroid Cancer AND my recent Melanoma diagnosis.  WHO would have thought I'd have met a few others on this board going thru dermatological surgery and waiting for biopsy results during the same weeks as me ??? Is that really possible?  That brings me to another point.

I believe we have all met on the board not by chance but by destiny .. there is a reason that brought us together and many of us will remain friends for a very long time -- it really didn't happen by chance.  

Just wish MedHelp would ease up a bit on their restrictions for e-mail addy's in posts ??? UKWIM ??

Cheryl

[redhed87]

I agree with you Dart Frog.  I found a "lump" in my neck in March and started on this site and went through this journey.  I too didn't even know what my thyroid did until I was diagnosed.  This is my therapy........I am thankful everyday that I have somewhere to turn on a bad day or even a good one.

[At The End of My Rope]

Thank you for the lovely post. I'm glad to have this post myself, yes I have been extremely shocked by a certain post lately and I have decided that i'm not going to write much right now, but trust me i get on this four-five times a day if not more and I read the post and sometimes post small writings. I can tell you that this site has extremely helped me through this whole process with my thyroid. God bless you all- Take Care- Pam this last week my emotion are all over the place, and i know this is just a journey in life I have to complete to move on to much happier days.

[Venora Moonwind]

I dont know what I would do without all of you here.Cheryl is right about this being destiny that we meet at this time in our lives.So many people dont understand what we are going through.Even my family as loving and supportive as they are didnt realize the depression and th fatique and body acheswell just feeling rotten.WE heree understand each other what we are experiencingand it soooo helps to know that there is someone who understands.There has never been a more caring group than right here.I am proud to know all of you and call you my dear friends.
Love Venora

[kipland]

Dart ~ you know, I read your post and thought that I could have written that!!  I found out right about the same time as you, and found myself here.  Some of those acronyms, I was like "what?!?!?!?!".  Well, I sure have learned a lot since then, and most of it has been from all of the wonderful people out here.  Excellent post, my friend!!  :-)

To the rest of you, ditto on everyone elses comment about having somewhere to turn to where you have friends that know what you're going through.  I'm out here quite often.  Sometimes lurking, sometimes posting.  But the one thing I know is it doesn't matter if I post about a thyroid question, or I post about rotten teenagers ticking me off, you all are there for me!!!  Thank you all for that!  You've probably saved MY sanity as well!!

Hugs,
Lori

[DLA]

I'm crying now.  If you read my post on "comments", I think you'll know what this forum has done for me.  I do spend a lot of time on here typing comments to people, but I don't have basically any one else to communicate with.  I have no friends, other than on here (no one wants a sick friend), when my husband's home he never talks, and my mom is retired and lives next to me, but she just thinks I'm lazy and need to go on Atkins diet, so I think you can understand why I don't talk to her much.  My Gran'ma was my very best friend and when I lost her I lost everything, and have felt so alone since then, especially since getting sick.  When you don't have the energy to keep up or to the money to do the things they want they don't stick around long.  So I thought this was my fate.

But on here I have found such a variety of friends it is amazing.  I honestly care about every one on here and feel like people do about me.  It is the most amazing thing in the world.  I'm like Cheryl and her ankle.  She said she got more support on here about her ankle than any where she could have imagined.  Same with me and the adoption problems.  All of you are amazing.

Every one on this board is amazingly strong and powerful.  I know that as women we tend to show our feelings more than men, but I think that maybe they are reading, too, and want you to know that even though we bash our husbands sometimes we are glad to have you on here and consider you as our friends also and thank God for you, too.

Dac

[SuzieQTT]

I don't know what I would have done without this site.  I found you about two weeks before my TT surgery and only wish I had found it sooner.  

Much love to you all!
Suzie

[zaksmom]

Just wanted to say that, until I started reading on this site, I was beginning to believe that I was just crazy, all in my head, etc -- the way the dr. was treating me.  I haven't been prescribed any antidepressants or anxiety meds - but they were offered.  I just kept getting the patronizing pat on the knee saying, Oh, you're just fine -- look at this lab work, you're as healthy as a horse.  So, this thing growing in my neck is really OK, and I'm just fine???  having literally every symptom of hypo is ok?  Then why in the he$$ do I feel like $$$$, and my hair is falling out!!!!  

So, thanks to all of you.  For someone in my shoes, it is really helpful to hear all of your stories -- good, bad, scary, etc.  It also shows the emotional rollercoaster that we are all on!  Knowing that alot of you started where I am right now help to see the light at the end of the tunnel.

thanks again,
betsy

[kipland]

Where are you at at this moment?  Have you had an ultrasound done or anything?
Lori

[zaksmom]

Yes.  Ultrasound confirmed multinodular goiter, 5 nodules on right side, 3 on left - all were, if I remember correctly, hypoechoic.  I don't have the info on me at the moment to give specifics, but the right side was over 5cm, and the nodules (combining size for nodules on right side) were just a tad larger than the side of the right lobe.  

What I don't understand is that the endo who did the ultrasound did nothing after that.  From reading posts on here, I was curious why a thyroid scan or FNA were not done.  When I asked him about it, he smiled a patronizing smile, and said - "we'll see in in a year, you're fine, you just need to lose some weight" (which, of course, set me off - I'm only 10-15 pounds from being within the range for my height).  He literally never even answerd my questions, he just left the room to go to dictate medical info for my file (which I could hear).  He indicated for my file that he considers me to be "subclinical hypothyroid" and he will not treat until labs indicate true hypo.

So, where am I at this moment?  I have made an appointment with a new dr for August 29.  Both the endo that I saw and my regular family dr do not listen.  At my regular dr. office, his physican assistant was really nice, and would listen -- however, she only lasted for a few months there!  So, totally off topic of thyroid, I made an appointment with a gynocologist that I've heard really great things about.  I'm hoping, that if she will even listen, maybe she can explain to my what the heck is going on with my thyroid, and why other tests may or may not be necessary.  Honestly, I want so desparately to feel better - but if I had a dr actually sit down and explain to me that it is their opinion to just wait, further tests are necessary/not necessary - whatever.  Just to have someone actually converse this with me would help!  So I am anxiously awaiting my 8/29 appt at 8:30 a.m!!!!

thanks for asking!
betsy

[kipland]

What a load of ****!!!  I'm sorry, but it just makes me so mad that some of these doctors basically shrug it off and say you're fat and lazy.  And you're 10 to 15 pounds away from your range??  Good Lord!!  I'm literally 40 pounds from my "range"!!!!  And what........losing that 15 pounds is going to make those nodules shrink too?  Whatever.  I'm not a doctor...don't even play one on TV, but what I do know is a lot of these people out here DID have "normal" levels when they had their bloodwork done.  I'm one of them.  The only thing that was out of whack was the antibodies.  I thank God that my doc was on it and sent me to the right people.  My endo had told me to think about how I wanted the nodule removed - either surgically or with RAI.  That was before the biopsy results came in.  The weekend before I got the results, I was thinking that I wasn't going to do anything until it became troublesome - like hard to swallow, etc.  Two days later, I got the thyca news - so I had no choice but to have it out.

I'm so glad that you've taken the initiative to get yourself a new doctor.  Hopefully this one will listen to you.  Even though my TSH was within "normal" range, I was having lots of hypo symptoms.  That's what took me to the doctor in the first place!!  I think "normal" is relative.  Each person is different.

Please let me know how your appointment goes on the 29th.  I'm hoping that this will be your last stop and someone will get to the bottom of this for you!!

Lori

[kipland]

By the way.....I didn't cuss up there in my reply.  I put c r a p. :-)

[Thindy]

I had to reply to you. Not only do I have a son named Zac I am also losing my hair!!!! I have hashimotos and I have felt very depressed about the amount of hair I have lost and continue to lose. I know i don't have cancer or anything but it has been tough for me!!

[zindy]

I"ve posted a few here & there.  But, I het on this site  and read lots of the posts.  All of you have helped me more than you know!!!  I thought lot of my problems was just me, in my head! I had a TSH of 111 and i thought my problems then was in my head I waited awhile before even call the DR. I'm getting ready for surgery thursday Aug. 16 for 5.2cm nodule/goiter( cold complex) whick I've been going through for 7 yrs.  Dr's has me worried bcz they told since I had a prior thy. surgery I'm at higher risk bcz of scarring tissue & that a taken rai pill trying to shrink this nodule it always but some scarring in there?? (confused) THANK YOU ALL

[zaksmom]

You don't know how much relief it gives me just to know people listen!!!  

kipland - I'm wondering, why did they do a biopsy on you - was it totally based on antibodies?  I'm just trying to figure out "why" the endo did not want to do one on me.  I don't know much about thyroids - but seems strange and interesting on how treatments or no treatment can vary so much from one person to another, and from dr. to dr.  I am so sorry that your biopsy came back with the news of cancer.  That has to be devastating - even though recovery is a much higher rate than other types of cancer.  What is your next step, do you have to have some sort of radiation?  or RAI I guess it is called.  ----- I'm glad you had a dr. who was listening!  I'd have had much better luck getting a diagnosis from all of you -- even though you're not a dr. (don't even play one on TV - loved that!)!    PS - yes, I'm literally 15 lbs from proper weight for height - gymaholic.  Total load of C R A P (of course, I naturally assumed that you mean c r a p! lol) for that jerk to tell me I'd feel better if I just lost some weight.   I even tried to tell him that I've had most of these symptoms since my son was born in 1993 -- he just smirked - no comment.    Thanks again for your input - I hope you have a full and speedy recovery!  I'll update when I go to new dr.!

Thindy - I feel for you!  It's natural to see a man losing his hair, to most people it isn't even anything out of the ordinary.  But on a woman -- I know I sure feel like people stare.  I've read other posts on here about products to help with hair loss (I think the shampoo was Nixiom or something like that).  I've also heard that flax seed oil or other omega 3's will help keep your scalp healthy, and in turn, keep you hair from falling out.  I've been trying the flax oil and evening primrose oil - my hair looks way fuller and noticably flatter if I go a few days without taking it (my hair is naturally very very thin, so losing more is just horrible!).    funny to have the same name for our boys too!!

betsy

[kitcurious]

I don't see anything wrong with posting off topic things. People put "OT" in front of them or something else in the subject line, so anyone reading specifically for thyroid info will know it's not specifically about thyroid.

Nobody who hasn't had thyroid problems understands what it's like to have thyroid problems. They all say "Well, you look healthy." Even my mother discounts it and starts to complain about her own
health before I finish a sentence. I am concerned about her health but her checkups are always good. I take her to every one of  her medical appointments and sit in with mom and the doc as they go over the exam results and make recommendations.

I always go to the doctor alone.

This is a support forum so yes, that means information about medical stuff, but it also means emotional support.

I know there are people out there who have more serious illnesses and they have my sincere sympathy and respect, but this is a thyroid forum.

Maybe we have mor "OT"s than other illnesses but the fact is people don't know anything about thyroid and don't have to ask for other  peoiple to accept that they don't feel well.

You know, after I told my boss it registered about as far as nowhere.  People are out vacation and a position is now suddenly vacant at work and the person they went after to cover the unfilled position was me. They have two people there who only work 16 hours a month. Yes, I said 16 hours a month, and they asked me instead, knowing full well I told them I am not feeling very well. Right now I am medically induced hyper. I feel hyper to be honest with you, tightly wound and irritable. I told them. Here's the biggest laugh The extra job they gave me was the VOLUNTEER coordinator's now vacant job. Those poor, sweet volunteers.

But I digress ( which I cannot help doing)
It breaks my heart that anyone is feeling bad in anyway.

I realize sometimes we just need someone to listen and not offer solutions. I am trying hard to learn that myself.

Love to all,
Kit

[kipland]

I honestly don't know why the biopsy was done, but am glad they did it.  They found the nodule via ultrasound, then I met with my endo.  I swear to you, I never felt the lump in my neck at all until it was pointed out to me.  It was 2.5cm, which by reading some of the others on here is not very large!  She thought it was a "hot nodule", but obviously wanted it checked out further.  Thank God, huh?  I was shocked at the results of the biopsy, as was she.  She actually called me herself to see how I was doing and to tell me that she was surprised as well.  I guess I've just been ever so lucky to have had good docs along the way, and I'm so very sorry that you have to go through all of this.

As for the hair loss?  When I was in high school, I had to get my hair thinned because it was so stinkin' thick.  I have had weight problems my whole life, and after I graduated, I was VERY overweight, and decided to go to a weight loss center to rid myself of it.  I went from 320 (yes, WOW!) to 155 in 10 months time.  It was a no fat, no carb diet - one that was closely monitered, of course.  Well, I found out that a person really needs fat in their diet, because I lost so much hair you could see my scalp!!  I got a lot of it back, but it's never been the same.  It's very fine and thin.  When I put it up in a ponytail, I use the "little girl" holders and can wrap it around three times.  About the size of a pencil, it is!!  I'll have to try that primrose oil.  I've started with flax seed and cod liver oil for other reasons, but maybe that'll help the hair as well?

Take care, my friend - and keep pushing until you find someone who listens to you and gets you the proper tests run.  I'll be thinking about you!!

Lori

[kitcurious]

I meant "people with other illnesses don't ahve to ask people to accept that they have one", sorry.