# Here I am, Andros!



## Twin1 (Mar 21, 2010)

Thank you again for all the support and stories. As I said in my introduction I have many symptoms associated with thyroid disease but no diagnosis. My sister has talked about thyroid for years but it wasn't until I went to a thyroid website a few weeks ago that I realized I may have thyroid disease as well. All of my symptoms were there, from the carpal tunnel to the the pressure in my ears that so far has doctors baffled. I've been told all the usual: you're stressed, you have allergies, you need emotional help. I thought the fact that my sister now has a huge goiter would finally give the doctor an aha moment at my most recent appt. Boy, was I wrong! Diagnosis:Anxiety. I guess concern over my health, combined with physical signs of anxiety, means I just have anxiety. I know it's not true. What I found most upsetting is that I have spent a lifetime being proactive about my emotional health and I am very proud to say that I beat those demons years ago. If anything, I think it has maybe been a symptom all these years. Twenty minutes of talking to me and she asks me if I have thoughts of hurting myself ? Or if it's interfering with my relationship with my son? No, she didn't! Yes, she did! I guess my big question is: Could this all really be something else? And my sis, huge goiter and normal labs. I've heard of hashitoxicosis but I feel so confused! Thanks again! All these thoughts, just got to get em out there!


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## Gudrun (Mar 19, 2010)

Do you have to keep telling people how HUGE my goiter is? "Let me tell you about my twin, she has a huge goiter, like an albatross." It's not that big. Someone did tell me recently that I was looking "rather Renaissance" but still.


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## chopper (Mar 4, 2007)

I assume Gudrun is Twin 2?

Welcome to the boards!


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## Gudrun (Mar 19, 2010)

She's just pressing home the fact that she was born first, making her the "planned one".


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## Twin1 (Mar 21, 2010)

[quote name='Gudrun']Do you have to keep telling people how HUGE my goiter is? "Let me tell you about my twin, she has a huge goiter, like an albatross." It's not that big. Someone did tell me recently that I was looking "rather Renaissance" but still.
OMG! you are so funny. Okay, from now on I will try to minimize the size of your goiter in my future posts: "My sister has this goiter, see, but it's not huge at all." or "My sister walked into a bar with a goiter (that isn't at all big) and said "Take my thyroid. Please!"


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## Twin1 (Mar 21, 2010)

Gudrun said:


> She's just pressing home the fact that she was born first, making her the "planned one".


Just want everyone to know that I am part of a set. And yes, I was the planned one.


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## Twin1 (Mar 21, 2010)

nasdaqphil said:


> I assume Gudrun is Twin 2?
> 
> Welcome to the boards!


Thank you for all of the warm welcomes


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## chopper (Mar 4, 2007)

That's hysterical! Shall we call you guys the Goiter Sisters? Thyroid Twins?


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## Twin1 (Mar 21, 2010)

Thankfully, I don't have a not huge goiter. Yet.


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## Gudrun (Mar 19, 2010)

It is not huge, it is only slightly noticeable.


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## Twin1 (Mar 21, 2010)

Maybe I have goiter envy.


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## Gudrun (Mar 19, 2010)

Maybe you'll develop a sympathy goiter and we can match.


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## Twin1 (Mar 21, 2010)

Maybe you can write a book and call it 'Goiter Walk with Me' or 'A Goiter Grows in California'


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## Gudrun (Mar 19, 2010)

"MOM, Becca's making fun of my goiter again! Tell her to get her own disease and stop copying me."


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## Twin1 (Mar 21, 2010)

Maybe you could you could get a big neck tattoo? Cuz I've noticed people with big necks do that a lot and it really seems to help. (not that you're neck looks big, really, I'm just on a roll)


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## Gudrun (Mar 19, 2010)

All joking aside, I am really curious to hear what others think your next step should be. I know you called and requested copies of your labs right? They told you they were normal but I don't trust any doctor anymore to even know what a normal thyroid is, or even that they ran the right tests.


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## Twin1 (Mar 21, 2010)

I am going to request (demand) a copy of my labs and ultrasound tomorrow and post them as soon as they arrive. I would love input!


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## prettynikki5 (Dec 9, 2009)

Hello and Welcome! Thing 1 and Thing 2 
You two are a crack! LOL! Very funny, reminds me of me and my sis 
Time for a new doc-who can refer you to an Endo. I had the carpal tunnel pain and BAD anxiety as well. I have a normal TSH (1.75) with a "not so huge" goiter , lol! I have antibodies which indicate Hashi's. From what I have been researching, autoimmune diseases, such as this one, can be in the gene pool. I hope you can get this diagnosis quickly.


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## Twin1 (Mar 21, 2010)

Thanks prettynikki5! I look forward to hearing all of your stories as well!


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## Andros (Aug 26, 2009)

Twin1 said:


> Thank you again for all the support and stories. As I said in my introduction I have many symptoms associated with thyroid disease but no diagnosis. My sister has talked about thyroid for years but it wasn't until I went to a thyroid website a few weeks ago that I realized I may have thyroid disease as well. All of my symptoms were there, from the carpal tunnel to the the pressure in my ears that so far has doctors baffled. I've been told all the usual: you're stressed, you have allergies, you need emotional help. I thought the fact that my sister now has a huge goiter would finally give the doctor an aha moment at my most recent appt. Boy, was I wrong! Diagnosis:Anxiety. I guess concern over my health, combined with physical signs of anxiety, means I just have anxiety. I know it's not true. What I found most upsetting is that I have spent a lifetime being proactive about my emotional health and I am very proud to say that I beat those demons years ago. If anything, I think it has maybe been a symptom all these years. Twenty minutes of talking to me and she asks me if I have thoughts of hurting myself ? Or if it's interfering with my relationship with my son? No, she didn't! Yes, she did! I guess my big question is: Could this all really be something else? And my sis, huge goiter and normal labs. I've heard of hashitoxicosis but I feel so confused! Thanks again! All these thoughts, just got to get em out there!


Oh,guess what? An errant thyroid can cause a host of mental health problems. The brain is dependent on an adequate supply of thyroid hormones.

And since you are a twin and your sis has TD also; no question but what it is genetic autoimmune.

So............here are some suggest tests to have run.............

TSI (thyroid stimulating immunoglobulin),TPO (antimicrosomal antibodies) TBII (thyrotropin-binding inhibitory immunoglobulin), Thyroglobulin Ab, ANA (antinuclear antibodies),TSH, Free T3, Free T4.

You can look this stuff up here and more.........
http://www.labtestsonline.org/understanding/conditions/thyroid.html

and under diet and exercise folder you will find info about Carotemia.

Have you had any of the above tests done yet? If so, which ones?


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## Twin1 (Mar 21, 2010)

Thanks Andros. I've had three sets of blood work. First: TSH only (because why would they do the full blood work) and second: TSH and free t 4 (had to beg for more) and third: Not sure but I thought I was given the full set with antibodies. When I get the full results I will post them. I do know that the TSH went from 2.4 to 3.98 to 1.2 (.450-4.5) in about three weeks. I was told that fluctuation is normal but my symptoms have swung right with the numbers. A few weeks ago I was tired, achy, inflamed. Now I'm having a racing heart and tremor which is why my last doc diagnosed me with anxiety. I haven't felt like this physically since my early twenties. Thank god I know how to control panic attacks. I am worried about my immediate heart health and I simply cannot afford to start dropping lots of weight. Is there anything specific you can suggest while I find a new doctor? I'm thinking I might go the ob/gyn route next. Our local Planned Parenthood is great and is where I've had some checkups and had most of my prenatal appts. I'm due for a checkup, anyway. My last appt was with a private practice and I was treated worse than ever. Maybe I'll get lucky at PP but I will not hold my breath. I tell myself that every time I get shoved out of a door without answers is one less time I have to go thru that! Good vibes to you and Thanks again!


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## Andros (Aug 26, 2009)

Twin1 said:


> Thanks Andros. I've had three sets of blood work. First: TSH only (because why would they do the full blood work) and second: TSH and free t 4 (had to beg for more) and third: Not sure but I thought I was given the full set with antibodies. When I get the full results I will post them. I do know that the TSH went from 2.4 to 3.98 to 1.2 (.450-4.5) in about three weeks. I was told that fluctuation is normal but my symptoms have swung right with the numbers. A few weeks ago I was tired, achy, inflamed. Now I'm having a racing heart and tremor which is why my last doc diagnosed me with anxiety. I haven't felt like this physically since my early twenties. Thank god I know how to control panic attacks. I am worried about my immediate heart health and I simply cannot afford to start dropping lots of weight. Is there anything specific you can suggest while I find a new doctor? I'm thinking I might go the ob/gyn route next. Our local Planned Parenthood is great and is where I've had some checkups and had most of my prenatal appts. I'm due for a checkup, anyway. My last appt was with a private practice and I was treated worse than ever. Maybe I'll get lucky at PP but I will not hold my breath. I tell myself that every time I get shoved out of a door without answers is one less time I have to go thru that! Good vibes to you and Thanks again!


You know what?My ob/gyn is the one that saved my life! He recognized that I was having a thyroid storm. YES! See your ob/gyn. You never ever know.

TSI Would settle the hyper issue. The patient should have no TSI (thyroid stimulating immunoglobulin) and if the patient does, that means hyperthyroid. The fluctuation occurs because the antibody to the TSI keeps it at bay. That would be the "blocking TBII" that does that. Usually if TSI is present, TBII is also.

http://www.sas-centre.org/assays/hormones/thyrotrophinbindinginhibitingimmunoglobulin(tbii).html

Thanks for the good vibes. I believe in that stuff. Karma, White light, vibes ......................whatever works, right?


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## Twin1 (Mar 21, 2010)

I am requesting copies of my latest labs which were more thorough than the others. I was told they were normal but who knows. I don't trust doctors to tell me what's normal anymore. In the meantime I will definitely make an ob/gyn appt. Even if I don't get answers at least I will get a check up that I need anyway. Thanks again!


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## Andros (Aug 26, 2009)

Twin1 said:


> I am requesting copies of my latest labs which were more thorough than the others. I was told they were normal but who knows. I don't trust doctors to tell me what's normal anymore. In the meantime I will definitely make an ob/gyn appt. Even if I don't get answers at least I will get a check up that I need anyway. Thanks again!


I am with you because even though there are ranges which are established by certain cohorts of the population, it leaves one to wonder. Also, labs do have to have ranges to use as a baseline but I have seen labs where the patient should have NO antibodies (TSI is one of them) and because they are less than <, doc says negative. Eeeeeeeeeeeeeeeeks!

No,no and no!!! We must learn as much as we can.

A lot of docs don't understand the thyroglobulin and thyroglobulin Ab as related to the possiblity of cancer either. It is very scary sometimes.


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## Gudrun (Mar 19, 2010)

What makes me so angry about Becca's case is that doctor treated her like that with a TSH that was all over the place. It's criminal, these are people's live we're talking about. The doctor even noticed her facial edema and thought her thyroid looked enlarged but when the bloodwork came back normal, it was like she pretended that those symptoms never existed in the first place and started drilling my sister about her mental health.

The same thing happened to me. My GP and I talked at a well baby visit and he initially agreed that my thinness could be due to postpartum hyperthyroid. When I went to my appt., he diagnosed me with anxiety five minutes in before he even ran any bloodwork, This was probably the 2nd time he had ever met me. It's maddening.


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## Twin1 (Mar 21, 2010)

One more question please? Are there any side effects to to taking prescription D?


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## Twin1 (Mar 21, 2010)

Oh yeah. It was almost scary the way she back pedaled on a couple of things. My facial swelling was now caused by a change in musculature as we get older. HUH?! I mean, that's what I thought it was until it got more noticeable. It could also explain why means ears and teeth hurt all the time. It is also really noticeable in pictures, my profile picture is a good example. Super pale with a slight hint of chipmunk cheek stickin out. Luckily it kind of subsides during the day. Anyone know any good tips for improving circulation and reducing swelling?


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## Phoenix (Mar 20, 2010)

LOL, you guys are too much. DO you have this much fun all the time?


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## Andros (Aug 26, 2009)

Gudrun said:


> What makes me so angry about Becca's case is that doctor treated her like that with a TSH that was all over the place. It's criminal, these are people's live we're talking about. The doctor even noticed her facial edema and thought her thyroid looked enlarged but when the bloodwork came back normal, it was like she pretended that those symptoms never existed in the first place and started drilling my sister about her mental health.
> 
> The same thing happened to me. My GP and I talked at a well baby visit and he initially agreed that my thinness could be due to postpartum hyperthyroid. When I went to my appt., he diagnosed me with anxiety five minutes in before he even ran any bloodwork, This was probably the 2nd time he had ever met me. It's maddening.


It is more than maddening. I believe in many cases, it is sexist. And condescending. It's a control issue. Grrrrrrrrrrrrrrrrrrr!

Puhleeeeeeeeeeeze don't get me started.:anim_55:


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## Twin1 (Mar 21, 2010)

Hey Phoenix! Yeah, this is pretty much us all the time. Welcome to laugh Olympics! You mentioned you had some similar experiences as a child. I would love to hear more! After a lifetime of thinking I was just a little 'off '(not that that's a bad thing!) it would be nice to know other people faced the same struggles.


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## Twin1 (Mar 21, 2010)

The worst part about that last appt. was the more I denied that anxiety was causing problems in my life, marriage,etc, the more convinced she looked. Like " You are obviously in denial or just plain lying". I think she really thought I was gonna break down and admit this was all some nervous breakdown brought on by anxiety about my sister's illness.


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## Andros (Aug 26, 2009)

Twin1 said:


> The worst part about that last appt. was the more I denied that anxiety was causing problems in my life, marriage,etc, the more convinced she looked. Like " You are obviously in denial or just plain lying". I think she really thought I was gonna break down and admit this was all some nervous breakdown brought on by anxiety about my sister's illness.


Some female docs are also sadist. I have run across a few myself. Supposedly it keeps them on their so-called superiority pedestal.

Yeah...............we want to have fun!!arty0048: Party on, baby!


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## Twin1 (Mar 21, 2010)

And male doctors are sometimes no better. My first doctor asked me "Is the father was around?" when I mentioned my son. I am a grown up, married woman! How do they make these snap judgements? I just can't believe so many doctors have such poor instincts about people they are treating.


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## Gudrun (Mar 19, 2010)

*snort* Oh, he's around all right. The irony.


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## Andros (Aug 26, 2009)

Twin1 said:


> And male doctors are sometimes no better. My first doctor asked me "Is the father was around?" when I mentioned my son. I am a grown up, married woman! How do they make these snap judgements? I just can't believe so many doctors have such poor instincts about people they are treating.


It is all about "control" issues. Both genders are guilty. Since my hubby and I never had health insurance (self-employed and too costly), I have had a lot of latitude in picking my own doctors and I do walk; and fast if you don't say the right thing to me. I am outta' there!

And there are some very very good doctors out there. It is all a matter of lucking out and finding them. When they are good, they are really good. And they really care also.

Such is life; we find that disparity in all professions and on all levels. Yin and Yang.


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## Twin1 (Mar 21, 2010)

It must be a control issue. I wonder if I shouldn't play it a little dumb next time: "Hmm, oh, I think my sister had thyroid disease." Maybe they get mad when you don't let em figure it out themselves. Takes half the fun away. We are self employed, I have some coverage and we are also partly covered by our public health clinic. The clinic really is great for check-ups and little stuff, but I've been there twice to no avail. On to a private practice, which was almost worse. We have to pay quite a bit out of pocket before the deductible anyway, so I'm just gonna keep seeing doctors til I get some answers. Next up: Ob/gyn, then maybe even my eye doctor, hell, I might even go get my teeth cleaned so I can talk to my dentist (who I have talked to about the jaw thing before, he is a great dentist!). My eye doctor and dentist prob can't refer me but have both treated me for many years and may be able to look at this thru unbiased eyes. Then I can also tell my next doctor that I was told to see a physician by my eye doc, by my dentist.


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## peaches (Sep 29, 2009)

Wow! Sometimes I wonder how these doctors get their licenses! They clearly don't retain any of information about thyroid disease that they learn. It is everywhere now-a-days and yet they still don't listen.

I went through 5 doctors before I found one who was interested it making me feel better instead of relying strictly on my labwork. My labs were showing mostly normal with a TSH fluctuation every so often yet I felt like death. She put me on Cytomel and synthroid even though, and it has helped immensely! I would have thought with so many great hospitals in St. Louis that their would be great endos everywhere. Nope, just hard headed men who act like your just hormonal or tipping the scales of insanity. I can't tell you how often I would leave appointments in tears thinking that I would die before anyone listened. It is so wonderful to have this forum where we can all compare notes and make each other feel better. arty0009:


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## Twin1 (Mar 21, 2010)

The support has been wonderful!


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## Twin1 (Mar 21, 2010)

I've read that people who are symptomatic with family history need treatment regardless of the normal labs. Just think off all the potential health problems I could head off now with treatment. Why don't they realize rational people care about their health and seek answers?


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## Phoenix (Mar 20, 2010)

Twin1 said:


> Hey Phoenix! Yeah, this is pretty much us all the time. Welcome to laugh Olympics! You mentioned you had some similar experiences as a child. I would love to hear more! After a lifetime of thinking I was just a little 'off '(not that that's a bad thing!) it would be nice to know other people faced the same struggles.


I always knew as a child there was something different about me from everyone else... I just couldn't put my finger on it. I was a little slower mentally, I never seemed to be quite as quardinated, I would go into these transe-like stares, I could gain and loose weight without even trying, and I never had great ballance. As I got a little older, I seemed to be more tired than a teenager should be, I couldn't concentrate, I went through a period of severe depression in high school, and started having issues with anxiety on occasion. I tired to convince myself that I would grow out of it... but things only contined to get worse.

For years, I was shuffled from doctor to doctor but never got any answers... except the usual - get more exercise, loose weight, socialize more.  How are you supposed to do thoes things when you can barely get out of bed, and drag yourself to work every day? All I wanted to do was go home and collapse into a heap and sleep forever. My mother became very worried about me. Every speciallist came up with something different, but they were only treating the symptoms, there were never any real answers. When I was finally diagnosed, and looked back over my life, I wondered why someone (mainly my GP) didn't connect the dots. All the information was there, it just was never looked at as a whole.

Whoops... sorry, I'm rambling. I could complain about ths all day. I know I have left out a few things from when I was a kid... :confused0024: when the fog lifts, and I remember, I will post more about it. 

Phoenix

(Forgive me if there are misspelled words, my spell check is not working right now.)


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## Twin1 (Mar 21, 2010)

Thank you for sharing! I was always the weird kid. Little, hyper, horrible eyesight which wasn't corrected until eighth grade ( how is that even possible, I was practically blind!), always the noisy kid in class, chronic growing pains, horrible memory. When I hit puberty I gained like twenty pound all in my boobs which I hated! Horrible depression, social anxiety thru my teens and twenties, acne, unexplained periods of weight loss, fatigue, tremor....It's almost overwhelming to think everything I went thru may have been caused by a medical condition. My twin sis Gudrun also has many crossover symptoms with a multinodual goiter and 'normal' labs. Her doc is supportive but stumped. Her first endo appt is this wednesday. Her health right now is really bad but I hope and pray she will get some answers. We probably have the same thing so I am holding my breath til then. Thanks again for sharing!


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## Andros (Aug 26, 2009)

Twin1 said:


> Thank you for sharing! I was always the weird kid. Little, hyper, horrible eyesight which wasn't corrected until eighth grade ( how is that even possible, I was practically blind!), always the noisy kid in class, chronic growing pains, horrible memory. When I hit puberty I gained like twenty pound all in my boobs which I hated! Horrible depression, social anxiety thru my teens and twenties, acne, unexplained periods of weight loss, fatigue, tremor....It's almost overwhelming to think everything I went thru may have been caused by a medical condition. My twin sis Gudrun also has many crossover symptoms with a multinodual goiter and 'normal' labs. Her doc is supportive but stumped. Her first endo appt is this wednesday. Her health right now is really bad but I hope and pray she will get some answers. We probably have the same thing so I am holding my breath til then. Thanks again for sharing!


We are all waiting w/ bated breath to see how your sis fares. I know you are anxious as well for a myriad of reasons.

It does not sound like you have much of a childhood. I am sad for that.


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## Twin1 (Mar 21, 2010)

Thank you Andros! Watching my sister suffer all these years has been hardest of all. And, I hope I don't come off too dramatic! I just had so many little physical and emotional things that I struggled with growing up and now I see many of those same experiences on thyroid boards! Yes, I struggled growing up and it was hard. But it also forced me to forge my own path in life. Luckily, as a musician and artist, I soon found other kindered spirits who accepted me. My strong sense of empathy has made me a good listener and many of my friends trust me with their innermost fears and secrets. Fighting my anxiety has made me fearless and triumphant! Most days I feel pretty darn lucky!


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## Andros (Aug 26, 2009)

Twin1 said:


> Thank you Andros! Watching my sister suffer all these years has been hardest of all. And, I hope I don't come off too dramatic! I just had so many little physical and emotional things that I struggled with growing up and now I see many of those same experiences on thyroid boards! Yes, I struggled growing up and it was hard. But it also forced me to forge my own path in life. Luckily, as a musician and artist, I soon found other kindered spirits who accepted me. My strong sense of empathy has made me a good listener and many of my friends trust me with their innermost fears and secrets. Fighting my anxiety has made me fearless and triumphant! Most days I feel pretty darn lucky!


I also am an empath.

This is not too dramatic. It is what happened and it is how you feel. Life is scary; especially when you are a little kid. And most times as an adult as well.

We are "lucky" to have the twins here. It's a hoot!!


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## Gudrun (Mar 19, 2010)

arty0016: We are a hoot, that's for sure. It's hard living 2000 miles apart but we talk every day on the phone.


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## Phoenix (Mar 20, 2010)

Twin1 said:


> Thank you for sharing! I was always the weird kid. Little, hyper, horrible eyesight which wasn't corrected until eighth grade ( how is that even possible, I was practically blind!), always the noisy kid in class, chronic growing pains, horrible memory. When I hit puberty I gained like twenty pound all in my boobs which I hated! Horrible depression, social anxiety thru my teens and twenties, acne, unexplained periods of weight loss, fatigue, tremor....It's almost overwhelming to think everything I went thru may have been caused by a medical condition. My twin sis Gudrun also has many crossover symptoms with a multinodual goiter and 'normal' labs. Her doc is supportive but stumped. Her first endo appt is this wednesday. Her health right now is really bad but I hope and pray she will get some answers. We probably have the same thing so I am holding my breath til then. Thanks again for sharing!


There are so many subtle hints at thyroid disease in the early stages, that it is often missed. Heck, even after you have full blown thyroid disease, they always seem to look for something else first... even though thiroid disease is so comon.

This is a great symptoms check list I found some time back, you can even print it out, check them off, and take it with you to the doctor's office.

http://www.tpa-uk.org.uk/symptoms_hypot.pdf

This list showed me many things that I didn't even associate with hypothyroidism.

Hope it helps a little.

I hope Gudrun's endo visit goes well... I have my fingers crossed.

Hugs

Phoenix


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## Twin1 (Mar 21, 2010)

Great link! I think for me the most telling has been the ear thing. Really loud fullness and really sensitive, when I talk on the phone or hear a loud noise it's like they are blown out speakers or full of water. I do also get allergies but this is year round for over two years, so annoying. I actually sleep with a fan on to drown it out! It's crazy how many of these symptoms I have, muscle and joint pain, carpal tunnel, sciatica, tmj, tremor, night sweats...the list goes on and on. Most of it I have been ignoring for years. When I finally went back to the doc about a month ago my big fear was RA. I made the thyroid connection a few days later after checking out a website. My hands are pretty messed up. I don't even like to talk about it with my band because I am so worried they are just going to keep getting worse. I've already given up carpentry, most gardening, heavy house cleaning, anything that stresses my hands. I have no idea how tomorrow will go for my sis...I just pray she finally gets the validation and the treatment she has been in desperate need of for years. Thanks for letting me ramble!


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