# Heart realated issues/Graves' / post RAI



## spenanelson

I was diagnosed with Graves' Disease about 7 years ago after I passed out in the shower. My heart rate was resting at 120 and would spike close to 200 with moderate activity. The heart rate issue has always been a problem as long as I could remember but it was always treated as anxiety until I was officially diagnosed with Graves'.

Since the original diagnoses, I have had 2 RAI treatments. We thought the first one killed all my thyroid but 3 years later it was back and very ****ed off. I had pre-cancerous cells in my thyroid and my heart rate was once again on the rampage. So I had a second RAI with a dosage that was double the first one. It has been 3 years since the second treatment and my levels are finally stable with 137 mg of Synthroid a day.

But this summer, I started getting heart palpitation again and racing heart rate. My heart rate was jumping to 160-180 and I was having chest pains and trouble breathing followed by nausea and general run down feelings.

My thyroid panels are find. All with in normal ranges. the only two things that were high were my cholesterol levels and C-reactive Protein. I was referred to a cardiologist and I failed my stress test, and the results from my 48 hour halter showed something that worried the dr. He referred me to an Electrophysiologist and he has diagnosed me with Inappropriate Sinus Tachycardia. But throughout this whole ordeal, they keep asking me about my thyroid level and I keep showing them the lab results for the two test I have had since this summer. I am now scheduled for a CT- Chest this week to make sure that my heart muscles are getting the right amount of oxygen.

So my question is, are there any long term effects on the heart following Graves' disease and or RAI? I am worried that the dr's are missing something and have just given me the diagnoses of IST because it is the easiest thing to do. And from what I have read about IST makes it sound like just another diagnoses for anxiety or panic attacks - which I do not believe this is.

oh.. I am now taking Lopressor 50 mg in the morning and 25 at night and
diltiazem cd but I don't know the dosage in the morning. 
Thanks for any help on this! I really appreciate it


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## lavender

Well, sadly, you are not the first or the last person to be told they were suffering from anxiety prior to being diagnosed with Graves. Same thing happened to me until I had to be hospitalized. So grateful the squad took me that morning even though they thought it was anxiety. I might not have made it had I stayed home. I really thought I was going crazy for months prior to getting a diagnosis.

I am sorry to hear you have had bad results with the RAI. I was only diagnosed this past summer myself, but have had some issues with heart palpitations/racing even since surgery. Thankfully, they have been manageable. Seems like my body is just really sensitive. I have no doubt the the stress put on my heart by uber high levels of thyroid hormone for so long had a lasting effect. I have also been told that I have some slight benign abnormality in my heart rhythm. The last time I tried to talk to my doc about my concerns, she gave me a script for anti-depressants, which I refuse to take!

What has worked for me has been to monitor every chemical I take, medications, supplements, caffeine, etc. My dentist knows not to give me the regular novicaine that has epinepherin in it, just gives me plain novicaine (which aparently does not work as well). Recently, I found that stopping vitamin B helped my symptoms go away. When I get my thyroid tested, I insist on getting copies of the tests and do not rely on what the docs tell me is "normal." Someone else's normal may not be right for me, and that way I can monitor how I feel at different levels.


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## spenanelson

I hate this dance we do with the doctors, with medicines and with diet. It seems that when things start to go well something breaks.

After I was first diagnosed with Graves' I stopped all caffeine - even down to chocolate. It was hard at frist but then I got used to it.

I also have a mild case of pernicious anemia and I take b12 for that and I have had issues with potassium levels. It seems like it is non stop and never ending.

The funny thing was that right before this all started again I was training for a marathon. And that has stopped. I can even walk up a flight of stairs with out feeling like my heart is going to beat out of my chest- I guess that is what a heart rate of 164 will do to you. It really hurts to say the least. And the first thing I did the next morning after it happened was to call my endo can have blood work done. And of course it came back normal.

They have also tested me for an adrenal tumor and that has come back negative. I don't know what else they can test me for or what else can be causing this sudden change.

I guess I fear that something can be wrong from years of uncontrolled Graves'. I remember that my initial levels of t3 and t4 were triple that of normal numbers and my TSH was non existent. And now finally after all these years, I have been on the same level of synthroid for a year! it's a high level but it works. I finally figured out how to take it - in the morning with out milk- and how to space out my other medication to avoid any interactions.

I guess I should be happy with IST, but I don't want to feel like a hypochondriac or an over sensitive woman. I am far from that and the last thing is need is sympathy or pity. That is why I don't like to complain.


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## lavender

I really hope they can help you sort this out. I know how hard it is for me to relax when my heart is working overtime. The sensation alone makes me anxious and irritable! 
My T3 and T4 were over 4x the normal numbers and my TSH was non-existent too! The doc who kept telling me I had the flu and that it just felt like my heart was beating really fast really apologized when that was all over! (I fired her anyway!)


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## spenanelson

lol... I am the same way. I am thinking about firing my endo because when I told them about my racing heart they said I needed xanax but would not prescribe it.


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## lavender

I was prescribed anti-depressants, two weeks after the same doc told me she felt uncomfortable prescribing me anti-depressants because of my medication allergies (and prior bad responses to anti-depressants)! Go figure.


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## Andros

spenanelson said:


> I was diagnosed with Graves' Disease about 7 years ago after I passed out in the shower. My heart rate was resting at 120 and would spike close to 200 with moderate activity. The heart rate issue has always been a problem as long as I could remember but it was always treated as anxiety until I was officially diagnosed with Graves'.
> 
> Since the original diagnoses, I have had 2 RAI treatments. We thought the first one killed all my thyroid but 3 years later it was back and very ****ed off. I had pre-cancerous cells in my thyroid and my heart rate was once again on the rampage. So I had a second RAI with a dosage that was double the first one. It has been 3 years since the second treatment and my levels are finally stable with 137 mg of Synthroid a day.
> 
> But this summer, I started getting heart palpitation again and racing heart rate. My heart rate was jumping to 160-180 and I was having chest pains and trouble breathing followed by nausea and general run down feelings.
> 
> My thyroid panels are find. All with in normal ranges. the only two things that were high were my cholesterol levels and C-reactive Protein. I was referred to a cardiologist and I failed my stress test, and the results from my 48 hour halter showed something that worried the dr. He referred me to an Electrophysiologist and he has diagnosed me with Inappropriate Sinus Tachycardia. But throughout this whole ordeal, they keep asking me about my thyroid level and I keep showing them the lab results for the two test I have had since this summer. I am now scheduled for a CT- Chest this week to make sure that my heart muscles are getting the right amount of oxygen.
> 
> So my question is, are there any long term effects on the heart following Graves' disease and or RAI? I am worried that the dr's are missing something and have just given me the diagnoses of IST because it is the easiest thing to do. And from what I have read about IST makes it sound like just another diagnoses for anxiety or panic attacks - which I do not believe this is.
> 
> oh.. I am now taking Lopressor 50 mg in the morning and 25 at night and
> diltiazem cd but I don't know the dosage in the morning.
> Thanks for any help on this! I really appreciate it


From the Graves'; sad but true. More importantly it is from "untreated/undiagnosed" Graves'. Like you, I suffered for 20 years being told it was all in my head. Finally, after having almost died from a thyroid storm, I was diagnosed.

Welcome to the club! I always say very advanced Graves' does not respond to the first RAI. I had to have 3 but of course you know that they cannot give you just any old dose of radioactive iodine. So, there you are! Not a purty picture.

I have prolapsed mitral valve. Most of us who did not receive early medical intervention have heart damage.

How are your eyes?

If I were you, I would definitely check your ferritin. If low, it could be causing some of the symptoms you describe.

Ferritin http://www.thewayup.com/newsletters/081504.htm

Your ferritin should be 50 to 100 in the range and the closer to 100, the better!


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## spenanelson

What's funny is that my mom's surgeon - who had never met me- told me to get my thyroid checked because of my eyes. That was two weeks after my labs which said I was fine. The the ultrasound tech who was doing a follow up to a mammogram told me the same thing. So I thought my eyes were okay, but now I don't really know.

I did ask my endo last year when I was having a lot of eye pain but he said that they looked fine and any issues I was having was probably allergies.

But I will definitely check to see what all my dr's tested for last time. the results were 6 pages long.


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## Andros

spenanelson said:


> What's funny is that my mom's surgeon - who had never met me- told me to get my thyroid checked because of my eyes. That was two weeks after my labs which said I was fine. The the ultrasound tech who was doing a follow up to a mammogram told me the same thing. So I thought my eyes were okay, but now I don't really know.
> 
> I did ask my endo last year when I was having a lot of eye pain but he said that they looked fine and any issues I was having was probably allergies.
> 
> But I will definitely check to see what all my dr's tested for last time. the results were 6 pages long.


If you can,choosing a Board Certified Ophthalmologist would be wise. They are trained to treat GED (Graves' Eye Disease.)

And I will be anxious to know if you have had a ferritin test. Please do have a look see!


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## spenanelson

Okay so I pulled my lab results and this is what they said.

TSH .5 0.3-5.1
Free Thyroxine Index 3.06 1.05-4.50
T3 uptake 29 30-120
T4 uptake 29.7 20-38.5

Other numbers that are off:

Amylase 29 30-120
C-Reactive Protein 4.4 1.0-3.0
Cholesterol 233 <200
Triglycerides 183 <150
HDL 51 >39
Risk Ratio LDL/HDL 2.65 <3.22

So based on my Thyroid numbers, I assume my thyroid is not the current issue.


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## Andros

spenanelson said:


> Okay so I pulled my lab results and this is what they said.
> 
> TSH .5 0.3-5.1
> Free Thyroxine Index 3.06 1.05-4.50
> T3 uptake 29 30-120
> T4 uptake 29.7 20-38.5
> 
> Other numbers that are off:
> 
> Amylase 29 30-120
> C-Reactive Protein 4.4 1.0-3.0
> Cholesterol 233 <200
> Triglycerides 183 <150
> HDL 51 >39
> Risk Ratio LDL/HDL 2.65 <3.22
> 
> So based on my Thyroid numbers, I assume my thyroid is not the current issue.


That just depends. Some of the tests that your doctor ran are antiquated, sadly.

For the most part, it is a good thing that amylase is low but you should read this.

http://www.labtestsonline.org/understanding/analytes/amylase/test.html

A high or increasing amount of CRP in your blood suggests that you have an acute infection or inflammation. 
http://www.labtestsonline.org/understanding/analytes/crp/test.html

You cannot tell much from the other tests except for the TSH.

And here is why...................... Understanding thyroid lab tests.....http://www.amarillomed.com/howto

I recommend that you get the FREE T4 and FREE T3 plus antibodies' tests if you have not done so.

TSI (thyroid stimulating immunoglobulin),TPO (antimicrosomal antibodies) TBII (thyrotropin-binding inhibitory immunoglobulin), Thyroglobulin Ab, ANA (antinuclear antibodies), (thyroid hormone panel) TSH, Free T3, Free T4.

You can look this stuff up here and more.........
http://www.labtestsonline.org/unders...s/thyroid.html

And definitely the FERRITIN.

I assume nothing and as I have said, some of the tests you have had run are very antiquated.

Lastly, here are antibodies' tests I recommend.

TSI (thyroid stimulating immunoglobulin),TPO (antimicrosomal antibodies) TBII (thyrotropin-binding inhibitory immunoglobulin), Thyroglobulin Ab, ANA (antinuclear antibodies), (thyroid hormone panel) TSH, Free T3, Free T4.

You can look this stuff up here and more.........
http://www.labtestsonline.org/unders...s/thyroid.html

Hope all the above is helpful; we must learn to advocate for ourselves and one way we do that is by learning.


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## JoellaD.

It's good to know I'm not alone, but I'm still scared. The fast heart rate and blood pressure spikes were what finally got my doc to send me to my endocrinologist. I had RAI on the 20th of this month (January), and today has been really bad with the fast heart rate. I take metoprolol ER, 50 mg. when my blood pressure is over 126/80. I'm afraid to take it if my systolic is below 120, which it was all day till 4 PM. My pulse has not been below 106 all day. What to do? Anyone?


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## lavender

Oh, 106 is not good. Have you called your doctor? They should have an on-call line. I would call pronto. You may end up going to the ER, but I would call the doc first. Anything over 100 is dangerous.

I went into thyroid storm in May, and had to be hospitalized for two days.

Here's a link:
http://www.webmd.com/a-to-z-guides/thyroid-storm

Don't let this slide. Thyroid storm can be lethal and requires prompt treatment.


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## Andros

JoellaD. said:


> It's good to know I'm not alone, but I'm still scared. The fast heart rate and blood pressure spikes were what finally got my doc to send me to my endocrinologist. I had RAI on the 20th of this month (January), and today has been really bad with the fast heart rate. I take metoprolol ER, 50 mg. when my blood pressure is over 126/80. I'm afraid to take it if my systolic is below 120, which it was all day till 4 PM. My pulse has not been below 106 all day. What to do? Anyone?


I do think you are dumping (thyrotoxicosis) and I also think you should call your doctor about this or just go to the ER.


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