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Let's post our stories here. I will start with mine:

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Old 05-24-2005, 08:11 PM   #241
Join Date: May 2005
Location: Maryland
Posts: 3
PixieDoodl HB User
Re: Let's post our stories here. I will start with mine:

Hello everybody! I'm new to this board and I look foward to getting to know others with my same condition. I am 22 years old and I was diagnosed with Graves Disease a few months ago. I had just graduated from college, got a new job, moved to a new state, and started living on my own when all of my thyroid symptoms started. Of course, I initially made excuses for the symptoms since I had gone through many huge changes when they all started happening. It all started with a bulging eye. When I went to the doctor and she started asking me about other symptoms, it dawned on me that something may actually be wrong. I was hot ALL THE TIME, I was nervous and very irritable, I was losing weight but I ate constantly, and my heart rate was 124! She started me on Tapazole and I feel so much better. I feel like I just took a deep breath. When you have a hyperactive thyroid, it's very hard to explain to others how you feel. You just don't feel well. I'm looking foward to meeting many of you and educating myself about this condition.

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Old 06-01-2005, 01:59 PM   #242
Join Date: Apr 2005
Posts: 9
Cissie HB User
Re: Let's post our stories here. I will start with mine:

My story... Whew, I don't know where to begin and to be honest even thinking about it wears me out! I will share more later on my background. But for now I am really desperate for some advice. I am pasting what I just sent on another thread. Please help me if anyone has any suggestions! I am praying and praying for wisdom on this! One thing I will share is that I had to have a hysterectomy at age 19 due to endometriosis. Currently I am on premarin and wellbuterin for fibromyalgia...My current age is 48.

My doctor told me my thyroid tests showed borderline. He put me on 50mg. synthroid a couple months ago. I am due to go back and have lab work done again for him to see how it is effecting my levels now. The thing is I am seriously thinking about asking him to take me off the medication. Since I have been on synthorid I have gained 13 lbs.!!! I need to be loosing not gaining. At first I thought I could see a little more energy in myself but now I take my med. with water and just go right back to bed. I have been sleeping at least 10 hours a day and if I could I'd just stay in bed!!! I make myself get up. Then I have problems going to sleep at night but I figure that is because I had slept so long. Yet once I go to sleep I do the same all over again and sleep forever!!! It's not that I am staying sleepy, just when I fall asleep I don't want to get up. After the first two weeks on the med. I told my doctor that my appetite was really out of wack. I wanted to eat and eat more than ever! He told me that was okay because it was a sign that my metabolism was kicking it. I just don't have a lot of trust in doctors sometimes. By the way, I also suffer from fibromyalgia.

PS The 13 lbs. really blow me away since I have been dieting!!! I do well for about a week then I do blow it but only for a few days. No way only a few days can cause me to gain 8 lbs. one time and then 5 then next time!!!

Last edited by Administrator; 03-02-2006 at 12:53 AM.

Old 06-02-2005, 10:34 AM   #243
Join Date: Jun 2005
Posts: 1
cafecreme HB User
Re: Let's post our stories here. I will start with mine:

Thanks for sharing your stories!

I'm 23 and was diagnosed with hyperthyroidism about a month ago. I had symptoms for maybe 7 months before that so compared to most of you i was diagnosed early!
I suffered tremors, weakness, dizzyness, rapid weightloss, a ravenous appetite, inability to sleep well at night...I'm on meds now but its only been a month. At my worst I couldn't even get out of bed, I was so weak and dizzy. But even worse than that is the depression and complete emotional instability. I cried at the slightest provocation, I just couldn't function. Well i have a job interview coming up and I'm hoping I can get through it with out crying. Wish me luck!

Last edited by cafecreme; 06-02-2005 at 10:38 AM.

Old 06-08-2005, 08:20 PM   #244
Join Date: Nov 2004
Posts: 243
shellshocked HB User
Re: Let's post our stories here. I will start with mine:

I was going to share some----but it's too unbelievable.

I have been to hell and back---a good doctor can help you.

A bad doctor can kill you---they almost knocked me off twice: once from what I suspect was myxedema coma---a "doctor" cut my dose of synthroid from 175 to 100---and at my next "check-up", he drops everything and drives me to the hospital where he dumps me off saying he thinks I'm going crazy. The ER doctor diagnoses depression despite me telling him I was fine when I was on a higher dose synthroid.
They keep me there for 6 hours---waiting for my bp to go down, or for me to have a stroke and die. They prescribed Zoloft---but not bp meds. Strange, huh?

Three weeks later I'm at another ER----because I nearly choked to death on a turkey sandwhich. I explain to them my history of hypo-t, that I have been "choking on my own spit", and they tell me my real problem is that I need to learn to chew my food better. They also diagnose depression---but they don't bother to prescribe anything.

I was on a mission to find a good doctor. I thought I did. He was smart---he had been in practice for a long time---and he saw my goiter from 30 feet. I thought for sure this was they guy.
I was wrong. He didn't really like to deal with the patients. I spent more time with his nurse who was a real fun guy---he was always drawing my blood for tests.
But the doc only looked at the test and when I told him that overnight, my stomach had literally expanded three inches---and I couldn't fit into my clothes, and I had massive strectch marks all over----that I had suddenly become so weak I could barely hold up the newspaper, he told me he thought he could fit me in in three weeks or so. I fired him. The office waited four months before calling me and asking why I hadn't made my appointment.

Another doctor seemed to be on the right track. They started me on 60 Armour, saw how good I looked and pushed it up to 120. For about 1 1/2 months I had a life. Then they did labs and dropped me from 120 Armour to a dose of 100mg of compounded t-3 and t-4---even though they said they never saw me look so good---and I seemed to be happy.

On the new stuff I swelled up so much and every joint in my body ached. I was completely bloated---I didn't recognize my own face or arms or ankles. I developed blistery sores on my face that still haven't healed after 7 weeks. After two weeks of this, they tell me to go back to the 120 of Armour.

Finally I found my old internist/endo in a town more than 400 miles away. We drove up one day, saw him, and drove home the next. I am feeling better---but I'm afraid I have a long way to go.

A bad doctor will kill you. It's just a matter of time.

A good doctor will listen and consider.

I hope I'm back with a good doctor.

Old 06-08-2005, 11:14 PM   #245
Join Date: Jun 2005
Posts: 2
arkady HB User
Re: Let's post our stories here. I will start with mine:

I'm new to this board and really appreciate everyone sharing their stories. It seems thyroid disease is one of the more frustrating ones out there. Here's my story, sorry it's so long.

I had radiation for two birthmarks on my face when I was an infant -- it was 1959 and that's what they did. The birthmarks went away, but I feel that was the source of my thyroid difficulties. All my life, I've had trouble focussing, and found out that is a common side effect of cranial radiation to small children . . . but that's another story.

At the age of 28, I had surgery to remove half my thyroid, which had a cold node. Not cancer, but extensive hashis. I took synthroid for a couple of years, but then stopped with no adverse side effects, so I went on with my life. At that age, taking a daily pill seemed like a horrible inconvenience.

As the years went by, I pretty much forgot about my thyroid, as my levels stayed 'normal' but I had very heavy periods, always cold, brainfog, hair loss. But the worst symptom of all were the extreme mood swings. I'd be fine one day, then nearly murderous the next. I put my fist through a window and a couple of walls, and had intense crying jags that lasted for hours. I screamed at my kids just for being kids, and that's what I feel the worst about. I would yell and be awful to people, and then crying and apologetic in the same breath, then back to yelling, over and over again. I seriously wondered if I was possessed.

I went to see several counselors, then a psychiatrist, and he diagnosed me with ADD and put me on dexedrine. The dexedrine really helped when I took it, but then I would experience extreme crashes and would feel terrible til I took my next dose. Also, I had a hard time eating and sleeping.

Last November, I started feeling a lump in my throat. I went to an endocrinologist, and she couldn't feel anything, but because of my history sent me for an ultrasound. There was a lump, and she recommended I have my remaining lobe out, again because of my previous history of radiation. I had it out five weeks ago, and there were four carcinomas, all under .5 cm with good margins, along with extensive hashis.

Three weeks later, with my TSH at 75, I did the radioactive iodine treatment, followed a week later by a full body scan, and I'm now awaiting the results of that to see if the cancer has spread. I've started on cytomel for the first two weeks, along with levo, which I guess I'll be taking for the rest of my life.

I'm looking forward to feeling better. I've put on about 15 pounds in the last couple of months, and am feeling pretty miserable. I just can't seem to get up off my rear end, and the house looks like a tornado hit it. My husband, who I've been married to for 25 years has been a saint, and I'm so grateful to him, and also to all of the rest of you who have shared your stories. I no longer feel as though I'm the only one dealing with this stuff. Hugs to you all!


Last edited by arkady; 06-08-2005 at 11:15 PM.

Old 06-09-2005, 04:09 PM   #246
Join Date: Jun 2005
Location: Alabama
Posts: 3
RN2BN07 HB User
Unhappy Re: Let's post our stories here. I will start with mine:

I was a healthy 29 year old mother of two until on May the 15th I start to be very sick to my stomach, upper right abdominal pain, and very tired. The GI doc's ran an EEG (light down my throat), colonoscopy, HIDA scan and ultrasound (for my gallbladder), and numerous blood test. Everything came back ok except my liver enzymes were out the roof so they thought I just had some type of stomach bug. However, the symptoms did not go away so I was admitted to the hospital to have my gallbladder out since I had some of the same signs as a gallbladder attack. I had Lap. Gallbladder surgery on May 28th, but however, I am still hurting , and my bloodwork is still bad.
My question is this: Should I approach my doctor and ask him to do a test for any type of Hepatitis virus. I work in a hospital setting as a nursing assistant, although I have taken the univerisal precautions in patient care there is always that chance you take of risking your health in trying to make other people better.
I do not want to seem overbearing and demanding and bossy to my doctors but I have not been able to eat anything more solid than chicken noodle soup since May 15th. And even before that I was fatigue and tired alot.
So anyone's opinion on my situation would be greatly appreciated

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Old 06-11-2005, 10:03 AM   #247
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Join Date: May 2005
Posts: 15
kahne9 HB User
Re: Let's post our stories here. I will start with mine:

I was initially looking for a crohn's disease site, but came onto this one. There is a lot of information in here in which i'm experiencing. I recently had my 4th small bowel resection and have been in pain all over since. After the first 3 surgeries I bounced right back to my old self, but this one is killing me. Every joint in my body hurts, I can't get the weight of from the prednisone like before, I haven't had a period since Jan. 31st. I have had preg test and they are negative. I don't know what to do. My doc just did some blood tests, for what all, i'm not sure I know one was CBC and a Chem 12. I'm at a loss. Thanks for listening (reading)!!
My thoughts and prayers are with you all. I didn't want to go into much more detail as would take too much time!

Last edited by Administrator; 03-02-2006 at 12:55 AM.

Old 06-14-2005, 12:59 PM   #248
Join Date: Jun 2005
Posts: 1
precious684 HB User
Re: Let's post our stories here. I will start with mine:

I am only twenty years old and I feel like im sixty. I have left the University of my dreams because I can no longer function. I can not remember anything and ALWAYS have "Mental fog". I have no concentration what so ever and is impossible for me to lose weight. Half the time I feel like I dont even know where I am. Everyone looks at me like I am CRAZY!! I suffered from anorexia for the past 7 years and was told I had a severe inbalance of hormones. I was put on BC to control my hormones. I was then diagnosed with osteopene due to the inbalance of hormones in my body. I also suffer from constipation...carpal tunnel....muscle weakness....joint pains....depression....panic attacks...heart palputations. I also notice when I am under a stressful situation I feel a throbbing pain under my chin( throat area). Someone please help!! Does anyone have a good physician in the New York area. Luckily, I have good insurance. Pleeeeeeease help!!


Last edited by Administrator; 03-02-2006 at 12:56 AM.

Old 06-18-2005, 09:55 AM   #249
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Join Date: Jun 2005
Location: north carolina
Posts: 24
bookchick HB User
Re: Let's post our stories here. I will start with mine:

Hello.....I am new to this board. I found this site while researching the hair loss I've experienced for a few years now. I read some of your stories, and things started to fall into place. I used to have extremely thick, healthy hair. Now it feels brittle and is so thin (especially at the crown) that you can see my scalp. About 4 1/2 years ago, my weight ballooned from 175-180 to almost 260 in less than a year. I wrote it off to being unhappy in a new place. My carpal tunnel I wrote off to my computer job. My cold hands were from the air conditioning. My sudden fear of everything unknown ( from asteroids to road trips) were just me being silly. My complexion went from oily to dry, and my lips are really dry too. That is just me getting older (I'm now 28). I've also had headaches, pretty bad fatigue and a case of the blues, can't seem to get motivated, my heart beats really fast and hard at times, my body aches for no reason, my allergies have worsened considerably, and i always have a low body temp. I was diagnosed with ovarian cysts 2 years ago, I have had problems with yeast infections, vertigo, and I take naps alot. I NEVER used to nap.
I thought my ob/gyn had tested my thyroid, but going through some papers last night, I discovered that she ordered a metabolic panel but no thyroid/tsh test.

Last edited by Administrator; 03-02-2006 at 12:56 AM.

Old 06-18-2005, 02:41 PM   #250
Join Date: Jun 2005
Posts: 1
janwalt HB User
Re: Let's post our stories here. I will start with mine:

I'm new here and have been reading many posts. I have recently been diagnosed with hypothyroid and I'm just blown away at how common it is! I had my baby one year ago and had attributed my sluggishness, difficulty losing weight, and irritability to being a new mom. After mentioning to my OB that hypo ran in my family, she tested me. (She wouldn't have otherwise!) My TSH is 16.8....which I think is quite high, although no one will really tell me so. (I am now on 100mcg of Levothroid.) Anyway, I'm thrilled to be reading your storiesI know there aren't definite answers here....but your experiences are valuable to me!
Thanks so much,
Jan :-)

Last edited by Administrator; 03-02-2006 at 12:58 AM.

Old 06-24-2005, 12:19 PM   #251
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Posts: 21
Bonnyjo HB User
Re: Let's post our stories here. I will start with mine:

Hello Treefrog and everyone else: I am so thankful to have found this healthboard web site!! Just reading what others have gone thru and are struggling with has helped me not feel so alone. My story and I will try to keep it short - I had not seen a physician in over 10 yrs for anything other than occasional bought of bronchitis or skin rash. Never thought anything could be seriously wrong with me, after all I am 48 now and until 2 yrs ago felt that most of the symptoms I had been having were due to getting older and possibly going thru perimenopause. I had worked full time as a medical receptionist and until I started to feel extreme exhaustion and shortness of breath did not see the doctor. When I did go, I was diagnosed with COPD, sleep apnea, hypothyroidism, hypercholestrolemia, lichen planus, and went thru a painful bout of diverticulitis with an abcess, then surgery for bowel resection, and menopause. Not all at once mind you, but this has been over the course of the last 2 yrs now. I never felt that it was worth my while to see a doctor for every little thing that cropped up. My attitude was that people who run to the doctor for every little thing don't have enough to keep themselves busy. I have had a rather rude awakening and regret not having taken better care of myself with annual physicals and those "little things that cropped up". I am currently still going thru adjusting the syntroid for my hypothyroidism and sometimes am not sure if a symptom I am having is due to that or another ongoing or soon to be new problem.... Having said that, I am thankful that all of you are here to listen and advise and give me hope.

Old 07-02-2005, 02:55 PM   #252
Join Date: Jun 2005
Posts: 1
DiamondsNDust HB User
Re: Let's post our stories here. I will start with mine:

Stories, huh? Well, I bet you have heard this before. I was misdxd with bipolar for 15 years. Yes, I took Lithium for awhile. But, I never hit mania. So strange, it was like I had the mindset, but never felt the deep lows or the wonderfly sky high highs. I sat in the middle, my pdoc said i was stable. He never ran any tests on me, other than when I demanded it for my Lithium levels, which I was taken off of due to side effects, I was almost toxic. Mad? Yes, I am angry. All hell broke loose in December of last year, and I ended up leaving my husband. Oh, everyone thought, I was just being a "psycho" (that is the words people I love used for me), but in reality, when I went to the gyno for an estrogen level check, because I had been feeling like I was flying into menopause after my hysterectomy, he accidently had a thyroid panel ran on me.
Viola'. There is the answer, the labs said the TSH was at 26. I was put on 75mcgs of Levoxol, then I got a call from the endo. My TSH was now reading 76, after one month of being put on Levoxol. So, he upped the dose to 125mcgs.

I have never felt better or more clearer mentally. So, the bipolar meds were messing with my whole thought process. Yes, I have the classic symptoms of Hashimoto's Hypothyroidism. I have an ultra sound to prove the dx. I also have the brain fog, the low energy, and lately, i have been sweating so bad that it is unbearable. I told the endo that last tuesday when I saw him, along with complaining about the Fibro I have been told I have too, although there is no blood work. He did run a cortisol test for my adrenals, and is not happy with the numbers. So, in 3 months, I have to have my cholesterol, TSH, adrenals, probably a few other tests, because there are 6 in all. I have dropped from 236 to 214 since January, no dieting. My bad cholesterol has dropped near 100 pts, and I have 50 more to go before he tries to slap a statin on me. I won't go on a statin, because of the Fibro pain. My emotions feel like they are doing this I want to feel good again. I have a nice sized goiter, but nothing I want them to cut my neck open for and remove, it's not that unsightly.
I am just so angry about the 15 years of wasted dx, the incorrect dx. I refuse to go on the medication merry go round again. I am tired of my pdoc trying to still insist I have a mood disorder. For some thyroid problems hit physically first, then mentally. For others like me, it hit me mentally first.

Get this one. I am supposed to avoid all stress as if that were possible. I have 3 teens. I just need some support. The bipolar communities I have visited, not on this site, but others, won't accept me, because I am not bipolar, I have been to a fibro board, and well, maybe I should try to stay here, and get some tips.

So, without writing a book, and boring you all to death, I will close. My TSH is now at 2.5. And people, I *still* don't feel good.

Old 07-13-2005, 12:06 PM   #253
Join Date: Jul 2005
Posts: 1
StubbornSwede HB User
Re: Let's post our stories here. I will start with mine:

I've never posted to a board before, so bear with me and any mistakes I make. I have 3 different incidences with illnesses/diseases and the medical establishment concerning misdiagnosis. In the interest of brevity here they are:

1. I went to 13 doctors in 5 states over a period of 8 yrs. I told everyone of them the same thing, there's something wrong with my female organs in my abdomen. I had classic signs of endometriosis, plus other symptoms. I was told everything from it's in your head to it's stomach cancer. Finally, a doctor listened, performed surgery and found not only massive endometriosis, but an extra uterus on the verge of rupturing and multiple cysts.

2. My daughter developed a bulls-eye rash and multiple symptoms of Lyme's disease, the same week her horse died of a "lyme's related disease" according to the Vet. She went misdiagnosed for 3 months while it progressed to her ocular nerve. I kept telling the doctors to re-test her, it was Lyme's disease and to give her antibiotics before she lost her eyesight. They kept telling me I was wrong. I brought in a specialist in Lyme's, he had the tests re-done at a lab that specializes in Lyme's testing, and confirmed it was Lyme's disease.

3. Currently I have multiple symptoms that all point to hypothyroidism (weight gain, brain fog, water retention, eyebrows fallen out, headaches, dizziness, joint pains, tingles and nerve shocks, depression, etc.) My doctor has run numerous tests and since my TSH falls within "normal" range, I don't have hypothyroidism. I told her, what if what's normal for most people isn't normal for me? I'm now scheduled to have a (shoot, can't find the word, constant problem for me, that test where you're in a machine on a table and it scans your head), and scheduled to see a neurologist. I don't mind having tests if it's actually going to help figure out what's wrong and get me treatment, but I've been seeing this doctor for more than a year and countless tests and my symptoms are getting worse. The mental confusion and inability to find words is proving detrimental to my career.

Last edited by Administrator; 03-02-2006 at 12:25 AM.

Old 07-13-2005, 04:58 PM   #254
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Join Date: Jul 2005
Posts: 13
titus8 HB User
Unhappy Re: Let's post our stories here. I will start with mine:

I was diagnosed as Hypothyroid in 2002. I was put on Synthroid and was fine for a whole year. Then, I started getting lightheaded (dizzy)after meals. And then one day the dizziness just never went away. I have been feeling dizzy since April 18,2003!!!! (I even remember the date!) I have gone to my doctor repeatedly He keeps telling me my thyroid levels are fine. I've been to a Neurologist, Endocrinologist, even a Psychiatrist and no one knows what is causing my dizziness. Over the course of the two years that I have been going through this, I have developed many more strange symptoms for example; my ears constantly ring and always feel stuffed up, I feel like I always have a sore throat, I keep getting this gurgling sound coming from my throat, My left eye lid constanly twitches, I am always fatigued, My hair is starting to fall out, I get the numbling tingling feeling, I get random sharp shooting pains! Yet the doctors find nothing!! I've had MRI's CT scans Ultrasound and nothing! I too thought I was going crazy, but when I read your message I felt like I finally found someone who understands, it was comforting. I am 24 years old and have 2 children and feeling dizzy 24/7 is just driving me crazy! I just wish the doctors could find out what to do about this cause it's been over 2 years already and I'm just hopeless.

Last edited by Administrator; 03-02-2006 at 12:25 AM.

Old 07-14-2005, 12:27 PM   #255
Join Date: Jul 2005
Posts: 3
Skybuf HB User
Re: Let's post our stories here. I will start with mine:

Tree Frog.....hope you look in. I cried reading your post.....I too have many of the same feelings as you did. My new dr just ordered blood work, mentioned looking at the Thyroid.....I will pursue this. I am a mess right now..too many different things happening all at once. Mainly fatigue, weight gain and I don't eat much and walk lots, but sore muscles, feel like water being splashed on my legs and ankles. SOB and don't sleep worth a hoot now...muscle pain when walking, I just want to sit on the sidewalk and not move again. I have a hubby that insists exercise is the key to all....little does he know of my pain. Anyway, thanks for your post........helps

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