[AllieKatz]

#1060189

I am wondering how everyone knew something was critically wrong with their health? For me, my body actually “gave in” this past December up until this past month. I was diagnosed with asthma when I was 2 and I have bronchitis during the winter, especially when it rains quite a bit where I reside.. I decided to escape the rainy winter and fly to my hometown of Chicago and enjoy the snow. I love the snow, and have always despised the rain..I was sick with bronchitis when I boarded my flight, became worse in Chicago with Strep, Laryngitis, fever, sweats, heart palpitations, dizziness, constant physical and emotional pain, inability to focus and concentrate, and a feeling of always being overwhelmed while running around visiting relatives and friends, then to “top it off” when I returned home to the west coast where I reside, I picked up the stomach flu from my daughter. This lingered for months, along with an ear infection, vertigo, depression, jitters and shaky, heart palpitations, shingles twice, two TIA’s in the past 4 years, distorted vision, headaches, depression, irritability..I thought I was going “crazy” and I started to feel Psychotic! The list goes on and on and on…The “straw that broke the camel’s back” was when I drove to pick up my friend at the airport this past summer. I live approx. one hour drive from two major airports separated by bridges. I had my dogs in the car with me, I started to become fatigue and dizzy, blurred and distorted vision while I was driving and to “top it off”, I drove over the “wrong bridge” while I was literally starting to fall asleep behind the wheel..Thankfully, my dogs started to bark..They saved my life!…I had to turn around and go over the correct bridge…so frustrating, so fatigue, I felt helpless, depressed and crazy! I was diagnosed by my primary care doctor 4 years ago with hypothyroid and have been taking all different strengths of Levothyroxine. My primary care doctor was never able to stabilize my T3, T4 or TSH with the Levothyroxine..He now suspected hyperthyroid and referred me to an Endocrinologist 2 months ago..I was taken off the Levothyroxine so that my Endocrinologist could run a “base line” blood test study which came back positive for Graves Disease last week…I chose Tapazole (Methimazole). If this is ineffective or if I have a negative reaction to this drug, I will move forward with RAI. If this is unsuccessful, then I will have a Thyroidectomy. I am concerned about possible damage to my heart, liver, kidneys, eyes from my Graves disease taking too long to diagnosis..I will see a Cardiologist, Ophthalmologist and other specialists in their fields.I have been taking Tapazole (Methimazole) for one week now and am starting to feel calm, relaxed, not so hyper as before and of course sane! I also forgot to mention that while traveling on an overseas flight out of the country for almost 20 hours in total air transit this past spring “ditto” regarding all of the above symptoms..I could not sit still in my seat. I was jogging in the aisles to relieve the jitters, panic attacks, unexplained energy levels.. The flight attendants wanted to know if I have a medical condition translating into a psychological problem? or if I have ADHD? I felt like punching something like a punching bag…or perhaps even a person!..I had all this unexplained energy…I felt paranoid like the flight attendants were going to call the FAA police to arrest me!..I felt so out of control!

[Kimberly]

#1181094

Hello and welcome! This is a great place for information and support. I know you will see a variety of responses here. Some were shocked to be diagnosed during a routine checkup. Others went through many, many doctors and were either misdiagnosed or told it was “all in their head” — before finally landing in the ER with thyroid storm or another issue.

Glad to hear that the Tapazole is finally giving you some relief!

[barbra]

#1181095

With me it was extreme weight loss in a short time, heart palpitations, insomnia, migraines and a goiter just big enough for me to notice.
Actually my PCP didn’t really get interested until, almost as an afterthought with my hand already on the door, I mentioned the goiter.

All the symptoms were unusual for me, but I never thought of anything as serious as Graves’ disease.

Take care.

Barbra.

[adenure]

#1181096

Hi!

I was diagnosed 2 months after my 4th baby was born. Initially, I thought I was just over tired from having a new baby along with homeschooling my older 3 boys. I felt “dizzy”/ off center a few times, but it went away (that was a month after the baby).

Then 2 months postpartum I really felt dizzy, off balance, I had a panic attack (which I never had before), my heart started racing and I went to the ER as I thought I was going to pass out. The ER doctor said I had a sinus infection (which was true) and that I blew my nose to hard and that’s why I felt dizzy like I was going to pass out. Yeah, no… anyway… so I was put on a Z-pack for the 1st time of my life. THAT was what broke the camel’s back. I had a terrible reaction to it and it pushed my body over the edge. Once the Z-Pack wore off, I still had heart palpitations (120 just walking down the hall), horrible fear and anxiety (I never had that before), diarrhea, ZERO appetite. I ate Ensure drinks for 2 weeks and no solid food as food made me gag. I lost 13 lbs. in those 2 weeks. I was shaky and a mess. So, back to the doctor. That doctor told me I had an anxiety disorder and he wanted to give me a valium and sent me home with a paper bag to breathe into… I kid you not. I couldn’t take (nor would I take) valium as I was (and still am) breastfeeding (and I still wouldn’t have taken it anyway). So, back home.

Went back AGAIN to a different doctor who finally ran some labs & discovered my screwy TSH of 0.01. She thought initially it could be postpartum depression (which I knew it was not). I really had to be persistent. I ended up at the endo. where my free T4 & T3 confirmed hyperthyroidism. I had antibody labs that confirmed (with a 95% certainty) of Graves. I was put on 5 mg methimazole daily, but my liver enzymes ended up being 8 times the normal amount 7 weeks later, so I had to stop it right away. Fortunately, my thyroid levels normalized on the methimazole and I was able to have a thyroidectomy 6 weeks later. That was 1 year and 4 months ago! What a ride! I’m on Synthroid now and doing pretty well. It isn’t perfect, but it is good. I am healthy again and able to care for my children and am still homeschooling & breastfeeding. I didn’t choose RAI for many reasons, but everyone is different. Glad to hear you’re on methimazole and hoping it all works out for you.

[miyogirl]

#1181097

When i couldn’t walk from my car to my work desk without almost passing out. I worked in a room full of employees and one day they arrived to work with me lying on my desk having trouble breathing. My co-workers all said “Something isn’t right get to a doctor!!!” I had been attributing it to stress and lack of sleep. Amazing what we can trick ourselves into thinking is “normal”

I was eating a ton (supersize big mac meals?!?!?) and not gaining a pound, but the anxiety, rapid heartbeat and eventually inability to walk a block without feeling like i was gonna pass out was what brought me to the doctor. When he got my bloodwork back he called me in shock and told me most people would have been in the hospital with my levels. I immediately, within hours of that phone call started my heart meds and Tapazole and the Graves’ journey began. That was over 14 years ago.

Since then I have tried Tapazole, which worked, but went in and instantly out of remission, did RAI, had TED, went severely hypo, gained a ton of weight, resolved my TED, did weight watchers, become euthyroid on synthroid (for the most part), had kids, lost the weight. For the most part for the past 8 years I have had a pretty ‘normal’ life health wise aside from some eye pain, fatigue, hair loss. Thinking of how awful I felt when first diagnosed and hyper and then severely hypo from RAI, i have felt good in comparison to the beginning of all of this.

Now having salivary gland issues (possibly from RAI??) but that’s new and still trying to figure all that out. Hope you feel good and find answers and a good doctor to help you navigate through all of this!!!

[Raspberry]

#1181098

My first real suspicion was about three months before the critical time. I was gaining weight, eating constantly and was also constantly active. I felt strange off-kilter and didn’t understand why I wasn’t losing weight since I was being insanely active. My mother has Graves also and gained weight with it. Lucky us.

At the onset my heart was racing beating hard for no reason that I could tell. I felt jumpy with my mind just racing about. I went to the doctor and asked about panic attacks but also my thyroid as I always am suspicious of it. Turns out that was it after all. I had had many other weird little symptoms that I blamed on other things as well, but it was feeling crazy – oh and the hand tremors and heart stuff that really did it.

Good luck to you, sounds like you’ve been through enough thyroid hell for one lifetime already!

[AllieKatz]

#1181099

Thank You Kimberly. I appreciate this wonderful page and feedback.

[AllieKatz]

#1181100

Adenure, Thank you for the feedback…Sounds like you have been through a lot..You also sound strong and a fighter!…I am worried about the methimazole I have now been taking for almost 2 weeks..It seems to be stabilizing my energy levels therefore making me less hyper and so much more calm however I am worried about high liver enzymes since I also take a statin drug for high cholesterol which also has the potential to cause high liver enzymes…What made you choose Thyroidectomy over RAI? Just wondering which path I will choose in the event my liver enzymes elevate from the methimazole then I will need to choose either RAI or a Thyroidectomy..

I am also wondering if I should have both my daughters checked for Graves since there is a possibility of genetic predisposed gene in various cases of Graves Disease..

Thank you again..Sounds like you made the right choice for you!

[AllieKatz]

#1181101

Thank You Raspberry!

Which course of treatment did you select? How do you feel now since your treatment?

[AllieKatz]

#1181102

Thank You Miyogirl,

You too have been through a lot! I am glad you feel better..
Graves seems like one of the most complex diseases involving so many factors..

.

[AllieKatz]

#1181103

Thank you Barbra,

What course of treatment did you select?

It is so confusing selecting the correct treatment plan because every treatment plan has it’s own set of risks..

[barbra]

#1181104

Hi AllieKatz,

I decided on RAI on July first 2013, just a couple of months after I was diagnosed, for several reasons.

I am now 70 years old, I live alone, my insurance makes me pay 1/3 of the cost of anything done at the hospital.
I wanted a solution which would not drag out like therapy with meds, something I could do and get through without needing help for 2 weeks, something without an actual cutting operation.

I am still taking medicine, of course, trying to get the levels normalized. I’s up and down, good days and then not so much, but I’m happy with the choice I made.

You have to weigh your options and figure out the way for you to go. This forum is a good place to get lots of answers and don’t be afraid to tell us how you feel or ask a “stupid” question. I do it all the time.

btw, my son was diagnosed with Hashimoto’s about 4 months before my Graves’.

I wish you the very best in whatever you choose.

Hugs.

Barbra.

[snelsen]

#1181105

I was in my 20’s. I began to be very fussy and irritable, things bothered me that usually would not. HUGE appetite, ate all the time, but losing weight, rapid pulse, could feel heart pounding, finally noticed that I had tremors in my hands when I was reaching away from my body for something (like setting the table for dinner.) KNEW something was wrong, but all docs initially just told me i was all stressed out with a new child, working and marriage and all that stuff. FINALLY got someone to actually listen to me, listen to my heart rate. Got a diagnosis. Was on Tapezole which helped make me feel like me again. Then had a thyroidectomy, it would be my same choice today. I take Synthroid, doing well in the way I feel related to thyroid, but have a problem with my Thyroid labs, always say i am hyper. Developed atrial fibrillation in the last month, which is a definite risk factor with being hyper. But I am also in my 70’s which (age and female) are also desk factors.
Shirley
40 years later, I got TED and it was very severe. Did not even know about TEd.

[Kimberly]

#1181106

AllieKatz wrote:

I am also wondering if I should have both my daughters checked for Graves since there is a possibility of genetic predisposed gene in various cases of Graves Disease..

Hello – Graves’ is very rare in children, but it’s good to have the family history noted in their medical records, just in cast symptoms do start to develop. Without that medical history, symptoms in children are often initially misdiagnosed as ADD.

The current theory regarding autoimmunity in general (not just Graves’) is that there is a genetic defect that makes us predisposed to getting an autoimmune disease…and then some “trigger” actually activates the disease. The “trigger” is often stress, physical injury, illness, or some type of environmental factor.

Even in identical twins, if one gets Graves’, it’s *not* 100% that the other twin will get Graves’. (I think the % is around 30-60). If genetics told the whole story, the correlation would be 100% – but there are other factors at work that researchers don’t yet fully understand.

[AllieKatz]

#1181107

Kimberly, Snelsen and Barbra,

Thank you so much for your feedback,
I am 50 and I can certainly for-see what lies ahead for me regarding Rx. meds, the costs, adverse side effects etc…..The methimazole (Tapazole) I am currently taking is “short term” for me and I am only using this drug for temporary relief.. Eventually, I will most likely select RAI versus Thyroidectomy because I have had too may unsuccessful surgeries in the past for spinal disk stenosis and ruptured disk issues. The side effects of the methimazole has the potential to cause liver damage along with the Statin drug I also take to lower my high cholesterol…After I am on the methimazole for 2 months my Endocrinologist wants to biopsy my nodules and small goiter..He feels that I do not have cancer, just tests to “rule out” cancer….Just when I was getting my life back together, I was diagnosed with Graves…My husband passed away from Esophageal/gastric Cancer going on two years the end of this year and I was his caregiver. I went through a major depression for many months….I think it is imperative to have our two daughters tested for Graves..They are 22 and 23 and away at college..They both have a significant amount of muscle pain, fatigue, high and low energy levels,headaches, etc….They are also athletes (competitive cheer/dance/gymnastics)..They have endured many upon many sports injuries…My 23 year old is highly emotional and stressed out all the time graduating U of CA 3 years ago at age 20 and is completing Law School next year and takes the CA Bar exam in conjunction to holding down 3 part time jobs on the weekends..I am so worried that she is doing too much… Kimberly, thank you for you input regarding the Genetics..The statistics make me feel better..Barbra, thank you for the information regarding your son’s Hashimoto’s diagnosis..I will eventually take my daughters to my Endocrinologist for blood work” when they come home from their University during the holiday season. I have lived in N CA for 17 years. I am a transplant from Chicago…I have met many people here in CA with various autoimmune diseases such as MS. who “swear by” bee stings..Yes, we have a group of bee farmers here who give bee stings to relieve pain. Apparently, the stings place many people with various autoimmune diseases into remission..Bee stings exasperate a natural Cortisone response which suppresses inflammation among other positive things..I will research this before I try this…Snelsen, how is your TED now? Hugs and wishing everyone well!

[Author]

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