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

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Old 04-07-2011, 06:11 AM   #316
Join Date: Apr 2011
Location: Ontario, Canada
Posts: 2
FeistyMom HB User
Re: Let's post our stories here. I will start with mine:

Hello Everyone!

I have a long story with tedious details if you can bear with me

I am currently in search for the root cause for my symptoms and am now in the process of looking deeper into thyroid and hormonal causes.

For me it goes like this:

I have lived in a lot of fear and anxiety my whole life and have had panic type of attacks and some fainting also from low blood pressure over the years. I have found in the last few years I have become more emotional around menstruation time sometimes severely, more forgetful. Currently my periods are fairly normal but I KNOW something is going on with other symptoms as I will mention.

Where do I start? Well about 2 years ago I was diagnosed with Acid Reflux disease (which is barely there now thank God) although I was eating fairly healthy, my research says this is from stress. Then about this past Sept 2010 I starting getting headaches-strange ones, one lasted a month straight and sometimes I would feel slightly nauseous and light. I got a CT Scan- "It is just stress". Well that went away. Soon after (Sept.) I started a job that was hard on the wrists and developed severe Tendonitis in both wrists- after only one week of work! At that time as well I started developing a lot of muscle pain everywhere (and still feel it on and off more in my back) especially in the back of my thigh. I had swelling in my ankles even a lot at that time (still Sept /Oct 2010). This leg pain and often wrist pain continued all this past fall an into Christmas especially with my leg- and a lot of times the circulation would be cut off. (I did fall down as well around this time- the leg thing MAY of been from that but not sure due to aches mentioned)....
Well all is alright, usually the aches were bearable... and then about the 24th Dec got very bad heart burn and nnoticed some of my food was not being digested properly in my stools..SUDDENLY...a few days later all of the weird stuff really started. This what happened.:
1) heart palpatations- kind of like a panic attack and I had a weird fearful feeling and unreality on my brain before this happened. My heart jumped to a fast and strong beat. I went to emergency- they checked my thyroid and said maybe bc I took Pseudophedrine I went into a Thyroid disease. All clear. The Dr. said, "Ok, what is wrong in your life are you under stress?". I said, no not really. Gave me some seditives and went home.
2) a short time later I started having ongoing shortness of breath, severe heart palpitations. Go to emerg again, have chest and lung exray, even a lung scan- all clear. Dr said if it is astma, here is a puffer perscription. Generally feeling nervous (not visible-yet). So I starting taking a multi vitamin with natural amino acids and a little bit of a detox formula (this is all about end January now) and a lot of vitamins/minerals/natural supplements.
3) ABout Feb 1/11- BAM! I wake up VERY dizzy and light-headed- bad diareah, parasites, etc in my stools (sorry for gory detail), an dI can barely function mentally and physically,. At hospital with a day or two and they checked my blood, liver adrenals- all good. Hmmm.....Dr. called it a virus and it should go away in a couple days. It didn't.
4) In the meantime I get my heart tested- stress test and moniter test- "your heart is strong and healthy"
5) This all continues for a couple weeks, and I cut back my hours at work because I felt like someone stuffed my head with cotton balls and I could barely think or function. I lost at least 10 pounds in 2 weeks. Still I am taking no meds except for some natural serotonin boosters which helped sometimes (5HTP). Feb11 th I can't take it anymore I go to the Mental Health ward at the hospital. I get a referal to a Gastro specialist, find out that blood is good, get a diagnoses from a Psychiatrist that I have Panic Disorder and Major Depression (all the while I am saying- NO THIS IS ALL MORE PHYSICAL I HAVE HAD NO TRAUMA!). Get a prescrip for anti- depressants and anti-anxiety- I do NOT take them.
5)Beginning March- found fogginess lifting but still experiencing: light-headedness esp at period time, some aches and pains random, pain in eyes and some blurry vision, eyes almost feeling crossed. Went to Gastro specialist who said "This is classic Hyperthyroid!!!" I said yes, that is how my symptoms have been. He is doing colonoscopy end June 2011. Also showed in ultrasound I have 3 small gallstones (no doubt from rapid weight loss and malabsorption)
6) mid-March to now- had CT scan- still waiting to hear back. Now, beg April I have noticed for a while a bit of a more obvious nervousness and can feel in my body ALTHOUGH a lot of my anxiety is gone, it is in my body. From the beginning to now I have some insomnia (feel adrenaline a lot or something) but can sleep 6-7 hours unbroken with calcium and Valerian Root every night. I feel restless, still very headachy at time but my eyes are better. I get achey in my muscles a lot and I am still a bit forgetful.
SO this is where I need to get tested I am thinking:
1- recheck vitamin levels bc of malabsorption
2- check hormones (My Dr thinks there is no need I am too young at 40)
Jan 28/11- TSH -1.57 (Range 0.35-5.00)
March 2011- Free T3- 4.7 (3.5-6.5 Range)
Free T4- 15 (9-23 Range)
4-check cortisol, adrenals
5-check any specific nerve problems
6-full blood panel?
7-pulmonary/cardiovascular test?
8-food allergies (Dr said specialist should do this)


I may be forgetting something, but I hope this makes some sense and perhaps someone may have some opinion about what is happening? I just wonder what started all this- the stress, the hormones, what? I mean if someones serotonin is generally good how can they say you have major depression? At least I am getting better but something is still going on . I still have the malabsorption but it isn't quite as bad.....Any thoughts are welcome and thanks for reading! I can expand on something to explain better, I am just in a hurry today:P


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Old 04-16-2011, 09:11 PM   #317
Join Date: Apr 2011
Location: Taiwan
Posts: 1
elleirabird HB User
Re: Let's post our stories here. I will start with mine:

Hi...I'm new this forum. I found it because I was desperate to find other people who were/are going through what I'm going through right now....

I'm Ari. I'm eighteen years old, and I got diagnosed with hypothyroidism (as well as severe anemia and adrenal fatigue) last year after several years of dealing with the symptoms. It started around when I was ten, I guess - I got surgery on my kidney because a vein was wrapped around it, and even though the surgery was a success I started having developmental problems shortly after. We're still not exactly sure what the cause of my hypothyroidism is. But I stopped growing taller (I'm very short compared to my family - they're all 5"7 and above and I'm only five feet tall) and didn't go through puberty until years after other girls. Even now, I have to take my meds to get a proper period.

Last year was when it got really bad. I'd been dealing with some weight problems since age 14/15 (I'm 5"0 and 128 pounds, not grossly overweight or even chubby, but I have a hard time losing any weight, as per usual to hypothyroidism sufferers) but then I started having extreme nausea, fatigue, and memory problems. There weren't any physical symptoms, though, so it took a lot of time for me to get diagnosed.

Right now, I'm slowly getting better. I'm on two medicines: something called eltroxin, for the hypothyroidism, and DHEA for the adrenal problems, which are still a big issue. I know that adrenal fatigue is kind of related to hypothyroidism, and I seem to have it pretty bad. Before all this I loved acting and being on stage, and now even giving a presentation in class is too much for my body to handle. It's not stage fright - it's just the body's natural nerves turned up way too high.

I hate it. If I don't stay perfectly balanced, if I get afraid or angry or nervous about something, or get an adrenaline rush for any reason, I get so, so sick. I'll start shaking. There's this awful feeling - like I'm constantly plunging down on a rollercoaster - and my legs will give out.

The worst part is that I'm doing my best to hide all this at school and act as normal as possible. Every time I talk about it I feel like I'm complaining, and I hate having attention like that on me. But it's getting worse...I'm having extreme dizziness problems, and I don't know why. But last Friday it was so bad that I started tearing up in class, and had to grab onto a friend to keep from falling over. I'm sorry for ranting, but I just wish my friend would notice how much I'm going through...I'm kind of the leader/caretaker of our group of friends, and I'm the one that always makes sure everyone's okay. I just wish they'd realize how hard this is for me.

Old 04-17-2011, 03:12 PM   #318
Join Date: Apr 2011
Location: New York
Posts: 3
chantelle1982 HB User
Re: Let's post our stories here. I will start with mine:

Hi all I'm Chantelle and here is my story.

I was born with no thyroid and so I have taking Synthroid since I was 3 days old. Like all children I just wanted to be 'normal' and so I started telling my parents when I was 14 I had taken it when I hadn't. I didn't take it for a total of 3 months.

I did not like to admit it to them but soon after I started feeling really tired and didn't want to do much and when it was my annual blood test at my doctors, my parents were shocked to discover my TSH was 100 +! My doctor didn't believe I was taking it and in front of my parents he said these exact words to me "Chantelle if you don't take this medication eventually you will DIE". Well after hearing those words I started taking it and haven't missed a dose for 14 years.

To the newly diagnosed don't worry about your fertility as my mom had her thyroid removed at 29 and had my sister at 31, my brother at 42 and me at 43. I have 3 children myself, my brother has hypothyroidism and he is a father of 3, so far it has not affected my sister.

About passing the disease on to your children.

All children by myself and my brother are all healthy thank god.

Synthroid has never affected me, I grew to a good height 5'7, have healthy hair and fingernails and have been overweight in the past.

Old 04-22-2011, 05:47 PM   #319
Join Date: Apr 2011
Location: Houston, Tx
Posts: 1
ecioa HB User
Re: Let's post our stories here. I will start with mine:

I am new to this board and just found this thread and had to join in.

I am 23 and for as long as I can remember I've had anxiety issues. I remember being 5 years old and having anxiety attacks every single day. So much so that I can have even a severe anxiety attack and no one around me will know it.

At 13 I was taken out of school and put in homeschooling because I had missed several days due to severe swelling in my knees. Within a year I went from being 94lbs to being 170lbs. I was never a lazy kid, but after I was put on homeschooling I was depressed, extremely fatigued and experienced a lot of joint pain. Because I have almost always complained about pain, unless I had any sort of physical proof that something was wrong I was told it was all in my head. Thankfully though, in the process of identifying what was wrong with my knees my doctor noticed that I had gained weight and asked me if I had been feeling depressed as well. (The only reason I was taken to the doctor for my knees was because they were visibly swollen after running around the field at school.) He originally thought I had mono but tests for thyroid conditions to be on the safe side. That's how I found out that I had hypothyroidism. My doctor told me that it was probably the cause of my weight gain and depression but did not go over the rest of the symptoms that go with it. He put be on synthyroid and over the course of a year tested every few months to be sure I was on the correct dosage. He did explain that this is likely something I would have to take everyday for the rest of my life. By this time I had just turned 14.

After we found the right dose that worked for me. I was on the medicine all of maybe 3-4 months before my mother agreed that I was fine now and no longer needed this medication. When I was 15 I started to develop allergies and severe heartburn. When I revisited my doctor for this he strongly urged that I continue to take my synthyroid and so he prescribed more. Once again, my mother decided he was just trying to sell me medication I didn't need so we never filled it.

By the time I was 17 I was severely depressed and very suicidal. I've always been against suicide but the thoughts were always there. I never thought twice about the source of my depression since I had only online friends, dealt with some molestation by one of my mother's ex boyfriend (she never believed me and continued to let it go on for 3 years), the fact was her boyfriend at the time was verbally and emotionally abusive, my older brother was the same and that my mom had two children with this current boyfriend that I was expected to take care of every single day. So depression seemed only natural.

When I was 18 I finally made real friends and I have been relatively happy since then. However, I worked at a retail store for years, at first I loved this job. I thought it was fun, friendly and kept me busy. Sometimes I would feel slightly faint. I would feel lightheaded and like I was juuuust about to pass out. This feeling became normal to me. If I did say something to anyone in my family it was always dismissed as me being lazy and not wanting to work. After working there for a while my weight stabilized at 140lbs. I worked night shifts there one Christmas season and despite the extremely strenuous work I did stocking I only lost 5lbs. After that season was up I went back to working days, gained 10lbs and the happy conditions at work deteriorated. I attributed it to having a lot to do with the new supervisor trying to get everyone fired by lying to the managers and spreading rumors about them. But I was growing paranoid about people ganging up on me behind my back and stressed with having to go somewhere almost everyday with people that I couldn't stand. My hair started to fall out. I decided it was time to quit and go back to school. This was last summer. My hair didn't stop falling out until earlier this year. But it has since start falling out again, I've gotten back up to almost 160lbs and my hypo symptoms seem to be returning. Little did I know that I've had them all along.

Going through and actually researching it for the first time do I notice that all of these things that I have been made to believe are normal or all in my head have all been actual symptoms of something I've already been diagnosed with. It just makes me angry to not only be dismissed so easily but actually made to believe that I was crazy or just wanted attention. The only person to ever sympathize with me was my aunt who also has hypo. I do not currently have insurance or a job. After finals for this semester I will get a job and try to get back on my synthyroid. I've barely been living most of my life and I made up my mind a while back to stop letting others hold me back from things I need for myself.

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Old 04-23-2011, 03:35 AM   #320
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Moob HB User
Re: Let's post our stories here. I will start with mine:

First off, thanks so much to everyone for sharing their stories. The suffering is so evident and frightening.
I am 52 and up until October of 2010 I was healthy (I thought I was just getting old)
Over the past couple years I have fought with fatigue and weight problems despite a good diet and exercise. I had my TSH level checked once and it was normal so I thought I was just having the usual stuff that went along with aging. I had muscle cramping and joint pain as well as insomnia and brain fog and my hair was falling out in hand fulls, but because the doctor said my thyroid was normal, I accepted that.
Then in October I got really sick with pneumonia! Never been so sick, three bouts of antibiotics and almost 3 months to get over it. I had a terrible cough.
Then in the new year people started asking me if I was sick, or had a cold. I didn't but my voice had drastically changed in that is had become very hoarse and croaky. I thought it was because I coughed so much when I was sick
I finally went to check it out and my PCP felt a "lump" and sent me for a ultra sound. He also did a TSH which came back normal at 0.82. Again the thyroid was okay!
The lump turned out to be a huge tumor that was compressing my vocal cord and was growing in my thryoid. He sent me to an EENT, who after a FNB suggested removal of the right thyroid with possible total. Lucky it was not cancer and he did not have to remmove the left side. I do have permanent paralysis of the right vocal now, but my voice is getting stronger each day.
I had surgery on the 21st of March, felt great, when home next day, no pain and back to work in a week.
Then noticed that I was not feeling so great, really tired wanting to sleep ALL the time, muscle cramping so much more worse than ever. Hair falling out and migraines daily. Every bone in my body ached. I thought I was going crazy....
fast forward to my follow up appt with EENT on April 20th. He walks in room and says "how are you today" OMG, I burst into tears! I never cry! Instead of running out of the room, he pulled up a chair touched my hand and said tell me how you are feeling.
I told him...LOL
He said no wonder you are feeling that way, you are hypo. My TSH was 9.7 with Flex Free t4 of 0.8
He said he is not totally up on caring for the thyroid but that we will work together to get me straightened out. He said that a lot of endo's don't recommend treating hypo unless the TSH is over 10 but he was not willing to do that as it is evident that my thyroid is failing and he was not going to wait to treat me.
There are no Endo doctor where I live, so happy he is willing to work with me and help me.
He started me on Synthryoid 75 that day. Said we would start at that dose and recheck in 30 days or sooner if I started to feel worse. Today was my third day on it and so far no change but I am hopeful after reading this forum and seeing how awful a struggle some pple had gone thru, and blessed that my doctor is willing to work with me and help me.
I feel so bad for what some of you have had to endure.
I think these forums are a wealth of information and acceptance and advise, and I am sure that with the information here and a doctor that is willing to work with me that I will once again be able to enjoy good health.
I hope that for all of you too!

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Old 04-25-2011, 01:33 PM   #321
Join Date: Apr 2011
Location: Alachua, Florida, USA
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Talulagirl HB User
Re: Let's post our stories here. I will start with mine:

Wow! I canít believe how many people are having such a hard time with this, and that they still understand so little about the thyroid. I wish everyone the best, and hopes of having answers and feeling better quickly.

Before my story began, I thought I was a pretty healthy 33 year old woman. I just had some sensitive skin, severe lactose intolerance, the occasional migraine (maybe 1 a year), Endometriosis, Hypoglycemia (controlled very well with diet), and IBS (only acted up when I drank a few alcoholic beverages, or got really stressed). I also had a lot of sensitivities to medications, fragrances, and chemicals. It was overall, not too bad and very livable.

My story begins July 26, 2010. We were currently finishing a remodel on our home, and having a garage sale that day to get rid of some of our old things. I began feeling strange during the sale. By the time we had cleaned everything up, I felt even stranger. I was weak, feeling cold and sweaty, I was having trouble thinking, and I felt like I was going to pass out. Even though I was either in the garage with a fan or in the house with AC, and drinking a lot of waterÖI thought maybe I was having heat exhaustion. I was getting worse, so we decided to go to the ER. At this point I was also having a terrible migraine and feeling nausea, so my parents stayed at the house with my son while my husband drove me. I began throwing up in the wait room, and it didnít seem to help my migraine any (like it would in the past with migraines). They checked my BP (low, but okay), they checked my temp (fine), they checked my pulse (85, high for me), and they did and EKG (which was fine). When I saw the Doctor, he said he wanted to run a bunch of tests. He said he was concerned about an aneurism, and meningitis. He also wanted to give me a drug for the headache and nausea. I told them I was really sensitive to most drugs, and would prefer not to. He convinced me, and they began putting Reglan into my IV. With about 3 drops of it, my pulse raced from 72 Ė 120 and I had a panic attack! Later, the Doctor came back to say that the CT of my brain didnít show an aneurism, and all the other tests were fine. He also said he wasnít convinced this was heat exhaustion (since I showed to be well hydrated), and felt like something was really wrong with meÖthen he sent me home! That was a Saturday, and he asked me to follow-up with my GP Doctor on Monday.

Well, my GP Doctor wasnít in on Monday, so by the time I saw her on Tuesday I had a list of new symptoms that were happening since Saturday: Headaches, neck/lower skull pain, anxiety, panic attacks, cold sweats, fatigue, brain fog, body pains, and much more. She had me go get more blood work, wanted me to start an anti-depressant, and sent me to see a physical therapist for my neck/lower skull pain. She thought that maybe I hurt myself during the garage sale, and that the experience at the ER may have started some anxiety/panic problems for me (which I have never had in my life). The blood work was a just-in-case. The antidepressants made me way worse (suicidal thoughts), so I stopped them (Doctor completely agreed). She asked if I would be willing to try one other kind, so I did. It did the same thing. I have always been very sensitive to medications. Iím one of those people that get all the side effects, and even invent new ones. We decided to try a low does of Diazepam, and to use it as needed. It worked well, even helped with the sleep problems that I now had too. The physical therapy seemed to be helping my neck (sometimes), and all my blood work came back normal (including a TSH of 1.66).

Eventually, I stopped the physical therapy, after it seemed that my pain would just come and go anyway. It has now been a few months and I still had all the same symptoms, plus some new ones. I was now losing lots of weight (even eating very well), losing lots of hair, getting a petechiae rash (mostly on my legs), having terrible heat intolerance, but sometimes freezing too, weak, muscle/joint pains, muscle cramps, body pains, reflux, indigestion, heartburn, using the bathroom a lot, very soft stools, dry skin (seems like I canít lotion enough), blurred vision, dizziness/vertigo and many more. My Doctor sends me to get an MRI of my neck area, and to see some specialist. The MRI came back normal, just some slight protrusion at C5 and C6. The Rheumatologist diagnosed me with Fibromyalgia. The Neurologist diagnosed me with tension headaches, wanted me back on antidepressants (NO WAY), and confirmed the Fibro. The Dermatologist said she thought my rash was from Ibuprofen, and to stop taking. Then she also diagnosed me with psoriasis and eczema. The gastroenterologist thought it was my getting worse, and maybe my gallbladder. I had a HIDA scan done, and it showed my gallbladder low functioning (45% functional). It was never a problem before all of this. He said not to eat fat!

My GP Doctor didnít really believe the Fibro part. It doesnít explain why I was losing weight. She wasnít sure what to do at this point. They had ruled out so many things, like: MS, Lupus, and thyroid (so she thought). She said lets give it about another month. My anxiety was pretty much under control at this point (so we thought). She said that time may show which symptoms stand out the most, so she will know where to look next. I think I had her completely baffled. The poor thing was trying so hard.

In the meantime, I saw a Chiropractor, Nutritionist, and an Ophthalmologist. The chiropractor (using applied kinesiology) determined I had a soy intolerance. So, I cut out all soy. It did make a lot of things better, but not gone. We also worked on adjustments that were supposed to help with Fibro. The nutritionist said that I was bringing in 2300 Ė 3000 calories a day, but couldnít understand why I was still losing weight. I started off at 143lbs, and Iím now 116lbs (64in tall). She thought it may be due to my low functioning gallbladder, and wanted me to go on a high protein Ė low fat diet. Then my gall bladder would allow me to get the calories from the food since it wasnít so hard to try and process the fat. It didnít seem to make any difference. At last weigh in I had lost another pound! The Ophthalmologist said my eyes were fine, so he could see no reason for my blurred vision.

I saw my GP Doctor again. I was really upset, and told her I needed to get better. My husband needed to miss less work, and I wanted to be able to take care of my 3 year old son better. She sent me for more blood work. She and I both feel like my symptoms scream thyroid problems. The TSH (2.35 this time), T3, and T4 all came back in range. She said she could send me to see an Endocrinologist anyway, so I did.

The Endo says that maybe my TSH normal range before all this was .3 (example), and that my symptoms are because I am out of what ďmy bodyĒ considers normal. She sent to have it tested again, as well as testing for antibodies and my cortisol levels. I think she is also testing my calcium levels. Iím now waiting on the results, and I have a follow-up appointment. She said that there is a problem though. If I test with antibodies (Hashiís), she wouldnít treat me now. She said it would make the weight thing worse, and that losing weight with Hypo is very rare. She would just watch my numbers, and treat as things change.
My GP Doctor has also referred me to the Mayo clinic at this point, and I have an appt with them on May 26th.

Sorry for such a long story. I was hoping to either help someone with all this information (or at least help them feel not so alone and crazy), or maybe someone has some information that may help me. Good luck to everyone!

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Old 06-26-2011, 02:29 AM   #322
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Re: Let's post our stories here. I will start with mine:

Thanks for your stories!

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