# My Graves Disease Adventure:



## JPGreco (Mar 2, 2012)

So I figured I should compile everything from the last couple of years into a single thread for the sake of others who have to suffer through Graves Disease.
Know that even though our experiences most likely differ, that I understand the chaos it can cause and that I do wish you, whomever you may be, the very best of luck in successfully treating your Graves disease.:hugs:

My name is James and as of this posting I am almost 32 years old.
Now, pleasantries and well wishes aside, here is my story:

The very first thing you need to know about me is that I just might be insane. I'm going to be honest with my experiences. I'm not going to say I did things I didn't do, or didn't do things I did do. Some of the things I did were HIGHLY recommended against. How I managed to do them or maintain any normalcy in my day to day life I only attribute to being a bit of an unusual individual to begin with, long before the onset of my Graves disease. As such, personal experience may, and most likely will, vary.

There is no family history of thyroid disease in my family, though I do not know anything about my maternal grandfather's family. I believe my case was brought on after a very severe case of acute tonsillitis. In my research, I found evidence that suggests severe infections in the throat area of people genetically predisposed to thyroid problems can cause the body to attack the thyroid by mistake. I believe this was the first official start date to my disease. It was 2003 and I was 21 yrs old.

The first noticeable symptom that I can now look back upon and say, hmm, that was suspicious and makes sense, was that about 2 years after the acute tonsillitis. I noticed I was much weaker physically than I had been a year prior. I had been lifting and running somewhat regularly, but stopped for a few months. Upon taking it back up, I was surprisingly weaker than expected and couldn't fight through that early plateau, which was very unusual. Running was harder as well as I would feel winded much faster. I wrote it off as being a lazy bum, who drank too much.

This overall feeling of weakness continued for about 4 years before I did anything about it. In that time I played and coached soccer. I just never felt strong. Also at work I always felt physically weak. I am a construction worker. However, those were the only two real symptoms. Probably about a the 3rd year I noticed more symptoms; tremors, rapid heart rate, heat intolerance, increased bowel movements. I didn't really notice weight loss, as I never really weighed more than 175lbs in my life and at 6'2" I've always been underweight.

So I researched those symptoms and came up with Graves disease. Went to my GP in 2009 and a blood test confirmed something was wrong with a TSH blood test of <.01 (.4-4.5 range). The GP gave me an Rx for tapazole, which I promptly ignored.

Finally the symptoms were too much to bear so I returned to my GP for another blood test......... in april 2012. This time, knowing my TSH was basically 0, he ran a few other tests as well. Blood tests came back with the same for TSH, TT3 394 (76-181 range), FT4 >12.8 (.8-2.7 range). As you can see, my TT3 was over twice the normal max and my FT4 was so high, it was outside the ability of the lab to accurately measure, but at least 600% greater than the normal range. I was given a new Rx for tapazole and sent to an Endocrinologist(Endo). I promptly ignored the tapazole, but I did go see the Endo.

*May 2012*. The Endo ordered more blood work, which I do not have a copy of. I was put on tapazole (methimazole) and atenolol (a beta blocker). Initially I was placed on 20mg of methamizole daily, but after further review, it was doubled to 40mg, and the beta blocker went from 25mg to 50mg daily. Basically, things were so bad, that my Endo doubled everything I was initially prescribed. The beta blocker had an immediate affect dropping my resting heart rate from about 120 bpm down into the 80/90s.
Thyroperoxidase AB (TPO): 2059 (0 - 35)
Anti-Thyroglobulin AB: 547 (0 - 40)
An ultrasound revealed multiple cysts, nothing suspicious, and slight swelling of both lobes. I did not have a fine needle aspiration (FNA) done.

A month later I was scheduled for more blood work, but wouldn't you know it, BAM; allergic reaction to methimazole in only 2 weeks. So no more of that for me. Nope, instead I got to go in for RAI treatment. I won't recount my experience with the LID here, as there is a wealth of information available on this site for that. My uptake scan came in at 72.9% at 24hrs. I went in for the therapy dose about a week or two later. I was hit with 14.91 mci of RAI. Just a note here, RAI makes me sick, both scan and therapy doses give me head colds, strange, I know. It took all of 15 minutes. I went in, sat down, swallowed a pill, signed some papers, and went home. Though I really like the doc, he was a cool guy and actually was on synthroid himself.
About a month after the therapy dose I had my first blood test.

*June 2012* So now it is June and I'm getting my 3rd set of labs done (first post RAI). TSH is still bottomed out of range and FT4 is still spiked outside of range. However, my crowing achievement is that my TT3 is also now out of range as well. Remember that 181 normal max? Yeah, my TT3 was >800. Can you say MASSIVELY HYPER? It was about now that my Endo was seriously considering emergency surgery. Not scheduling one for as soon as possible, no, rather calling the ER immediately and admitting me then and there. She was really freaking out. Me, I was just sitting there waiting to go to Dunkin Donuts on the way home.

Over the course of the next month or so, my thyroid swelled a bit. Prior to the RAI, I had minimal Goiter. It was only noticeable to those looking for it. Now, some of my friends noticed it, but not everyone. It wasn't massive or obtrusive to my daily life (like swallowing) but it was there and a little tender. Actually, this is good, as it is a sign the RAI took, as is the increase in my symptoms and labs. The only new symptom post RAI was itchy skin on my shins. I actually had a lot of cuts from scratching so much.

It's at this point I need to mention something. Even with those test results, I still played soccer roughly 4 hrs per week (2hrs, 2 nights). I was out of range in all 3 major categories and still was playing. I just started taking one of the daily doses of my beta blocker about an hour prior to playing soccer. Something that the warning labels explicitly say can be dangerous, not to mention the danger of exercising while being in a hyper state of thyroid disorders. Yep, I said I may be crazy.

*July 2012*. Another round of blood work. TSH and FT4 are still out of range, but my TT3 is back in range, at 791. Endo is still freaking out and can't figure out how I can just sit there like nothing is happening. Heart rate is still in the 90s even on the beta blocker, still taking roughly 50mgs a day.

2 weeks later, still July, another round of blood tests. TSH and FT4 are still out of range, TT3 though has now fallen considerably. It is now 338, which is actually less than prior to the RAI treatment. My endo is very happy. Me, I'm still thinking about stopping at Dunkin Donuts.

*August 2012* Another month, another blood test. TSH is still out of range. TT3 is now 200. FT4 is finally in measurable range and plummeted to 3.0, just barely outside of that 2.7 normal range. Endo is elated

*September 2012* another month, another blood test. TSH IS measurable! TSH is .01, not less than anymore. But oh no, TT3 has gone up to 475. FT4 is*I WILL UPDATE AS I DO NOT HAVE FT4 NUMBER FOR THIS LAB*. Looks like the RAI didn't fully take. Though since TSH has risen, Endo wants another round of blood tests to make sure this increase is trending and not another hormone dump by dyeing thyroid cells.

Life gets in the way here, so blood work that was supposed to be scheduled 2 or 3 months out gets pushed back and back again. In this time though, all the symptoms that had subsided or even just lessened returned with a vengeance. Most noticeably, increased bowel movements. For a while I was normal. When I'm crazy hyper, shortly after eating I need to use the restroom. Very inconvenient when at work. So I knew I was seriously hyper again even without blood tests.


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## JPGreco (Mar 2, 2012)

*Feb. 2013*
So go in to see my endo. No recent blood work, but we chat. I leave her office and call for another appointment for another round of RAI. A few weeks later I'm in for round 2 of RAI. I was supposed to get close to 20mci, but somewhere there was a mistake and I was only given 15.2 mci. Endo wasn't happy about that. I was also switched from atenolol to propanolol for beta blockers. I was apprehensive, but propanolol worked great too for me. Though, prior to the RAI it wasn't strong enough at 20mg every 8hrs to last the full 8hrs. 60mg a day couldn't handle how hyper I was. I guess the smart thing would have been to call the doc and say something, but I just went about my business at the Rxed dosing.

Because this was my second dose of RAI I was VERY VERY strict about my LID. I completely cut out anything I even questioned. I wanted my thyroid to be on "E" when I went in this time. A second scan dose showed 40% uptake, but I accidentally ate something that skewed that result, shhhh, don't tell my doc.

*April 2013*
1 month later now and I get my latest labs drawn. TSH, as usual is out of range >.01. However, the big news is that 1 month after being very hyper and a small second dose of RAI, my TT3 is, wait for it, IN RANGE!!!! TT3 is 120! FT4 is *STILL PENDING, WILL UPDATE MONDAY, or when I remember*. I feel pretty damn good. Endo is happy too (though she was sick when I saw her, our appointment lasted 15 minutes at most). She dropped my propanolol to 2x a day, cause I told her I had stopped taking it 3x a day cause my heart rate was down in the low 70's/upper 60's at rest even when I missed doses. I didn't take any at all today and its still at that rate. I still feed a little odd though when I don't take it, so I guess I have to ween myself off of it. Like I feel uncoordinated sometimes if I miss doses.

I have labs scheduled for 6 weeks out, but was asked to just monitor myself for anything that may suggest hypo or creeping hyper again. I have an appointment in August, unless something happens between now and then.

So that's where I stand. After a year of intensive blood work and treatment, 4 years of being stupid, and who knows how long actually having Grave's disease, I am, ahem, "normal" for the first time in a long time. Problem though is this all started when I was 22ish and invincible and I'm now almost 32. I don't know what to attribute how I feel to, age or Graves. I don't know what normal is anymore. I can't say if I'm back to normal. I can say though that I feel pretty damn good. Symptoms are basically gone. I feel stronger (I can run harder and longer in soccer). So things are good on the Grave's front... for now.
:anim_40:

I will update over the course of the next few months and keep my entire story here for others.


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## JPGreco (Mar 2, 2012)

Tips learned from Personal Experience:
1) When starting a new Rx, docs like to write 3 month prescriptions. 
DO NOT GET 3 MONTH Rxs!!!!!!!!!!!!!!!!!!!
The worst feeling in the world is buying a damn 3 month Rx (without insurance) that costs 300 bucks and finding out in 2 flocking weeks that you're allergic to it.:anim_08:

2) Trust yourself. If you feel something is not right, go with that feeling. Ask questions.

3) Don't be brushed aside by a doctor. I don't give a damn how high and mighty they think they are, they are working for YOU! Don't be rude to them, but don't let them be rude to you.

4) BETA BLOCKERS can be a god send. However, there are several types. If one does not work for you, try another type. I will update with info on types, but basically it is what receptors they bond to, which affect how you feel.

more as I think about them....


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## JPGreco (Mar 2, 2012)

reserved hahahaha


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## Andros (Aug 26, 2009)

JPGreco said:


> reserved hahahaha


Cute!! ROLF!!!

PS: I read the whole thing!


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## StormFinch (Nov 16, 2012)

You sir are one lucky individual to have gotten through 4 years of ignoring your scrips without being any worse for wear, and then the thyroid that would not die! lol Glad you're feeling better. To heck with what your old normal was, as long as you feel good consider this the new normal and enjoy.


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## JPGreco (Mar 2, 2012)

Thanks, yeah, in retrospect, probably not a good idea. Though my Endo couldn't figure out how I was so nonchalant about everything. I never suffered from the emotional roller coaster that most others go through, even when I was at 800+ for TT3.

Andros, I figure the length will scare the casual researcher away, but its out there now for anyone who finds some solace or info in it that may help them.


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## bigfoot (May 13, 2011)

Dude, awesome thread and update! Glad you are feeling "normal" now. I don't know how you were able to go through all of that and come out the other side, pretty much no worse for wear.

I'm curious -- along the journey, did you discover any other endocrine issues or other health problems that were maybe amplified by Graves'? Did they ever check things like testosterone and so forth?


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## JPGreco (Mar 2, 2012)

Bigfoot,
Not having insurance means I pay for all my blood tests. So until I can abuse obamacare, I really have no money to even investigate. However, I don't display and physical symptoms that would suggest the need to test other areas. Well, at least I didn't while hyper. Now, if I am finally done trying to balance the Graves, and I find that other areas of my life don't seem like they should, then I will go have tests. If I can qualify for health care, I will have a full battery of tests done.

So really, to answer your question, No, I have not noticed or experienced any other abnormalities, but I was also not tested for anything. My liver enzymes did increase a little while on methimazole, but we never retested once I stopped the methimazole.

I also take a high quality multivitamin though, which I only stopped prior to RAI treatments because the vitamin contains iodine. I also take a couple of other vitamins that target more specific areas, such as glucosomine for joint health. So that combine with being physically active for a minimum of 2hrs a week and up to 8hrs, on top of having a physically demanding job, it seems to have all worked out.

I actually have to update my story to include the fact that GED never presented. Sometimes I felt a little pressure behind my eyes or my vision seemed blurred, but I attribute that more to computer screen eye stress.


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## pandatx (Mar 27, 2013)

I read every word. Thank you for sharing all of that. It was very helpful for me to see it all. How you could be in pretty bad shape but be feeling sort of okay and thinking about donuts, lol. That would so be me. It was helpful to see the time frame that you are giving as well. I'm only a month or so in and feeling depressed at still feeling crappy. I haven't even had my follow up blood work (I'm going tomorrow or Friday to have it drawn) yet. Patience isn't my strong point but I guess that might be part of my lesson in all of this.

Thank you so much for sharing your story.
xo
Amy


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## JPGreco (Mar 2, 2012)

Glad it helped Amy. It is a slow process, no matter what route you take, but it does end eventually.

The current issue I'm dealing with is that I feel cold, but I don't really know if I could attribute to the RAI and possibly hypo or low range (next round of tests is a month away) or the more likely fact that I've been hyper soooooooooooo long that I'm very used to feeling warm and now that I'm "normal" it feels cold. Its gonna be a double edged sword for me. I used to hate summers cause I just couldn't bare the heat, but winter was a breeze. Now summer will be at least tolerable, but I'll freeze my tuckus off in the winter. I work outside, so its a toss up over which one is better.


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