[letsgomets]

#1059975

“What are you in for?” as they used to say in those old school gangster movies when those jailed asked each other why they are in the big house.

Here is what happened to me:

It was October 28, 2008. I woke up that morning and got dizzy. I didn’t think anything much of it…

Until that night, when it was time for bed. I went to lie down, got dizzy again — and I noticed my heart rate was way up. Over 100.

The next day I went to the doc. “You are dehydrated,” he said, “Go home.”

And I went home…

And drank LOTS of water…

And my heart rate stayed up way over 100.

I rode it out for the rest of the week — on Sunday night, when my heart rate went to 145 and was climbing rapidly, I decided to take myself to a hospital.

I was in there for 2 and a half days — you guys know the drill: heart monitor to wear, lovenix blood thinners — until they made the diagnosis. I was discharged on Election Day morning.

I saw one endo — too old school and TOOOOO busy — he only had “part time hours” — Mondays, Tuesdays and Thursdays — and it was a damn 3 hour wait to see the guy! (he was older and semi retired, I think, and he squeezed everybody in on those 3 days — the endo I see now never has a waiting time. I wait 20 minutes tops) I’d spend a half day with travel time and then waiting for this guy; enough was enough.

He overdosed me at one point — I found another doc. I was fine and in remission in December 2009; I was taken off the methimazole — and 6 months later to the day, the Graves came back.

I was on vacation and my heart started to race out of nowhere; i was on my way home that morning. I had the hotel call the local ambulance squad; I wound up back in a hospital — same thing, same drill. In there for a couple of days.

I went to the hypo side later that year; that got resolved (by now I was seeing the new doc) and so far, I am under control.

[Kimberly]

#1179269

Thanks for sharing your story! I wrote about my journey not long ago in this thread…

(Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

http://gdatf.org/forum/topic/43387/

Hopefully, others will chime in as well!

[bigad]

#1179270

5 weeks ago, I went into atrial fibrillation, which I thought would go away in a couple of days. Two weeks later, saw the cardiologist who put my on a beta blocker and blood thinner.

He also had me take a blood test, which showed a thyroid issue. Went to my primary who explained that I was experiencing hyperthyroidism and took a TSI test that was positive at 326.

Referred to the Endo doc…just met with him yesterday and we decided to take the RAI route. Spoke to the RAI scheduler and they explained the whole process to me. What gives me anxiety the most is being radioactive and told to stay away from people for 4 days. I’ll still be scared to get near my 11 year old son on the 5th day. I guess I’ll wait a full week to be safe. The RAI scheduler said I’m getting a low dose- around 10 to 12, so after 4 days, I should be fine. I’ll be secluded in my basement (man cave).

I’ve reviewed this forum and have been googling away on this graves disease. I just turned 50 on May 8th, and what a gift after 50 years of life. I’ve never been on meds or anything, so I guess I just have to man up and accept my new condition. My dad is in his 80’s and took the RAI route over twenty years ago and he seems fine…he takes synthyroid…gets checked every 6 months and his levels have been normal.

I just can’t wait to get this process over with so my heart rate can get back to normal rythym, although Metoprolol has kept my rate in control. This is my story as of week 5…will see how RAI goes in June. Then will probably need synthyroid like my pop.

[James]

#1179271

My story spans almost two decades now, and in a nutshell; I was fortunate enough to beat the odds by achieving a long term sustained remission, although admittedly it took some time to get there. My thyroid levels were initially off the map with undetectable TSH levels.

Back in the 1990’s, the internet was very limited as a source of information and I relied mostly on instinct; text book information, and my Doctor. Initially, I had a strongly biased endo (as far as treatment options were concerned), but I had an open minded GP that worked closely with me for years. I stayed the course and remained on Methimazole for about 10 years with no serious side effects to speak of. The journey included a few bumps along the way, but with each minor set-back, a shorter term relapse was achieved and a longer term remission often followed. I was in and out of remission several times during those initial years and in retrospect, learned that I would have been far better off by staying the course with meds, without stopping “cold turkey”. I wished I would have insisted on TSI testing in order to confirm the appropriate time to come off of meds (ATD). For roughly 3 years (2000 to 2003) I was on minimal maintenance doses of Tapazole (10-15mg/WEEK), and seemed to do just fine at those levels. Finally in late 2003, I discontinued ATD therapy completely. Since that time I have been for regular blood tests (now about once a year), and because Thyroid disease (Hashimoto’s) runs in males in our family, I request TPO testing periodically as well. My last thyroid test (a week ago), couldn’t have been better. The size, texture and physical characteristics of the gland seem completely normal and healthy, even after 10 years of being barraged by thyroid stimulating antibodies. Having perused this board for many years now, I realize that everyone’s situation and result is different. Sometimes we are left with no choice, but have to take an option we would prefer not to take. I consider myself very blessed to have chosen a treatment option that not only worked for me, but got me to my goal. Of course none of this would have happened without the assistance of some very good doctors along the way.

James

[vanillasky]

#1179272

Diagnosed October 2012/ Before that they thought I had Hashimotos. I was hypo sometimes but hyper a lot which would leave me bedridden. Sometimes for 3 months at a time. The endo I went to, said my thyroid was dying and damaged and would soon go hypo permanently. I would live on Synthroid and live happily ever after. NOT

This went on for 15 years. I went to different local endos who told me I was anorexic or was mentally ill. Fact was: I was hot, heart racing, losing hair, palpitations, depressed and just in a complete sweaty fog. I was tried to kill myself because no one understood what was wrong with me so I figured it must be cancer.

I went to gynecologists for hot flashes and nothing worked and still has not to this day. I had many tests. The TSH was either 7.0 or 0.01. Up and down all the time several times a year. Worst symptom was burning hot and heart racing. I lost my job as an insurance broker. Ended up in ER 2x. No one would believe me when I said I thought I had Graves’ disease.

Finally I went to Cleveland Clinic. It took 2 doctors and a series of blood work to tell me I carried 800 TSI, had a dropping hyper TSH and was indicative of Graves’ disase. Gave me options of eithe r RAI or TT.

Since then, I started Tapazole immediately and am now in remission. However, do not feel well. I have heat intolerance severely. Right now, they feel it’s menopausal.

[Boomer]

#1179273

My story thus far can be found here: Diagnosed @ 49 y/o

It quickly degenerages into my rambling madness so get in, get out, and pretend this conversation never happened.

Good vibes to all,

Boomer

[Gabe]

#1179274

Thinking back I think I’ve been hyper most of my life. After a physical in December 2012 and a resting heart rate of 130 my PCP did all the right tests and was diagnosed Graves in January 2013. The months since then haven’t been pleasant. Ups and downs — hyper, hypo, miserable, menopausal, eye involvement, rage, foggy brain, irritability, etc. Decided early on that meds were not for me since the side effects from those complicate my Graves. So had my surgical consult and am scheduled for a TT on 5/31/13. Confident in my decision but naturally nervous. My goal: the last half of 2013 and the rest of my life will be much better than these last 6 months. I want this craziness in my rear view mirror!

Karen

PS. Boomer, thanks for finding us on this forum…every one of your posts makes me laugh out loud and that’s really good medicine!

[Boomer]

#1179275

Gabe wrote:

PS. Boomer, thanks for finding us on this forum…every one of your posts makes me laugh out loud and that’s really good medicine!

No no no! Thanks for being here for me. I’ve never felt such a warm welcome and sense of fellowship as I do here. The GDATFoundation, the admins here on the site and forum, all of the contributors, and all of the brave fighters that came before me deserve any and all credit. Were it not for the good people here on this site I’d be feeling very much alone with this mess.

I will, however, take the blame for my often-vain attempts at humor. Laughter really is good medicine, though and I hope that in spite of my silliness now and then it is clear that I take this disease, the members and bosses here, and anyone suffering and fighting back against this dreadful disorder VERY seriously. You are ALL very important to me.

Gratitude for and love to all,

Boomer

[Kimberly]

#1179276

@James – Nice to see you posting! I actually sent you a message a few weeks ago via e-mail and FB, but not sure if it arrived!

@Bigad – Glad that you found us…this forum is a great place for information and support!

[gerical]

#1179277

Hi to All! Back In JAnuary I had a routine physical and told my PCP I had not been feeling well……..anxious, jittery, moody , crying at times. He thought that I was just having a “rough” time with family issues, work and life in general and gave me a prescription for an anti0depressant medication. I would have thought that after 20 years of going to him he would have known me better…….an anti-depressant? My routine labs came back with a TSH of 0.08. I showed this to him at my next visit, never took the antidepressant and said could my thyroid be giving me all the symptoms? Don’t these docs know that we will look these things up before we go to them? He said” no its nothing because your T3and T4 are normal. I didn’t feel comfortable with this and made an appointment with an endo and here I am. Diagnosed in March and after additional testing started Methamizole in May. On Lopressor 50mg twice daily

Recently I developed excessive swelling in both legs. I found another PCP, fired the other one and she is sending me to a cardiologist. I am on my feet all day and towards the end of the day it is hard to walk. I say this too shall pass. Waiting for the meds to kick in Have too much stuff going on to think of anything else, my son is graduating high school, prom etc… some days are better than others……… They all will be good soon I hope………

“Won’t let Graves get in the way”…..

[butter999]

#1179278

It is interesting to read your experiences.
Mine is one that has finally ended. My wife asked me to ghost
write this for her since she passed 3/18/12.
Twenty four years ago when she was pregnant she had Graves Disease.
During the pregnancy she was thought to have gestational diabetes
Her obstatrician who was also her GYN found it to be Graves disease
shortly after the birth of our daughter.
We were referred to an endocrinologist who said she needed RAI coupled
with synthroid.
Both of her parents had thyroid disease and her Mother had a TT during her second pregnancy.
None of us knew the import or were given any explanation of what an autoimmune disease entailed.
Over the 23 years of treatment her thyroid grew,her goiter grew ,she had nodules ,her bones ached but her TSH was just fine
Her parathyroids were never checked, she never had a CAT scan or blood tests for calcitonin or Xrays. NO SHE WAS FINE.
That is until she had stomach pain and we went to the ER and she had a CAT scan which showed thyroid cancer in her brain,bones, all organs but her TSH was fine. STAGE 4 C medullary thyroid cancer.
Let me ask,if you have an autoimmune disease like Graves and your immune system is constantly being compromised and cancer is an opportunistic disease
why isn’t Graves Disease or Hashimotos taken seriously in the last 100 years.
How can you be fine when your own immune system is at war with itself.?
Now my young cousin and my daughter have been diagnosed with Hashimotos and IT IS NOT FINe!!!
How much longer can we have little to no progress with finding a way to conquer this killer ?
My BEAUTIFUL WIFE IS DEAD AND MAY HER DEATH NOT BE IN VAIN!
HELP!!!! An AUTOIMMUNE DISEASE IS NOT FINE/

[Kimberly]

#1179279

Hello – I’m so sorry for your loss, but we appreciate you sharing your wife’s story here.

Yes, absolutely, it’s critical that autoimmune conditions be taken seriously! We need more awareness *and* more research to help combat the 80+ autoimmune diseases out there, including Hashimoto’s and Graves’ disease.

There’s also a lot of misconception in the media and in our communities as to how serious thyroid disorders are. Interestingly, Google CEO Larry Page revealed earlier this month that he has Hashimoto’s thyroiditis and called it a “common” and “benign” condition. Perhaps it’s “benign” in the sense of non-malignant, but it is certainly a life-changer for many people.

Wishing all the best for you and your cousin and daughter and hoping that you can all find peace and healing.

[Naisly]

#1179280

Thank you so very much butter999 for sharing. It is stories like this that make me angry and question why doctors still insist on giving RAI. And wonder why GDATF doesn’t talk about it – cancer. This is why I tried to start a post here:

http://www.gdatf.org/forum/topic/43388/

Sadly the topic was pushed away. Yet it is very healthy to talk about it, because the more you do the more you are familiar with it and can educate yourself so you don’t end up like butter999’s wife. Educate and Advocate for your self!

@butter999 it takes 5 years or more for cancer to surface after a RAI treatment. I do have a lot of info regarding RAI – PM if you want me to pass some onto you (the info I have acquired is from medical journals, studies etc).

@Kimberly about Google’s CEO Larry Page. You got it partially right, that comment he made was from a few years ago when he was first diagnosed. Since that time he has lost most of his voice and now has a different look on it.

But he is only human, and it usually takes something bad to happen for us to take notice sadly.

[Gabe]

#1179281

Butter999. So very sorry for your loss. How sad and tragic. I’m sure you are a strong advocate for your other family members who are battling AI diseases. Your wife’s story is a great example of why we all need to be active participants in our treatment and become very educated on all options. Especially since the lack of clinical data on AI’s, particularly Graves, is appalling.

My best to you and our family,
Karen

[snelsen]

#1179282

I am so very sorry for your loss. That is a sad testimony. The only way to memorialize your wonderful wife, is to try to help others, which you are doing.
Really hard to realize that with the gland increasing in size, that the proper tests, plus a thyroidectomy, were not done. What a waste of a life.

Thyroid cancer is very rare, and when diagnosed early, appropriately treated, the outcome is very good. I am so sorry.

The rest of your family members should see endocrinologist who know the family history, and I sure would want CT scans of my thyroid.

You are doing a great service by helping others, and I know you will be a vigilant advocate for your cousin and your daughter.
Shirley

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