Finally, Some Answers

[KimC]

Hi,

This is a follow-up post to "Need Guidance Please."

I was Christmas shopping in Charleston on Tues., lifted up my six-year-old to place her on top of a counter and Bang! I had severe chest pain w/ SOB that sent me packing to the ER. (This time I didn't wait to see if it would get worse).

Charleston's MUSC did a very thorough evaluation, including lab work, an echo and nuclear stress test. I was released today. Although I did not have "ischemia" during the stress test, they had to stop because I became severely short of breath again.

Their diagnosis? Hypothyroidism that could be explain sinus bradycardia, pericarditis and fluid in the airways. They didn't think I had chronic bronchitis.

I asked if moderate AI/TI could cause the SOB and chest pain, and the RESIDENT who told me the results said no, my EF was 55%. He also said the cardio who did my exam had left for the day, and that he would call back on Mon. for more info.

I am so confused at the moment. And shocked. And tired. And most of all, sick of white coats!

Anyone out there ever have hypothyroidism? The good news is that it could be transient, i.e., a postpartum complication. The bad news is that mine's severe, and I've probably had it for awhile given how much it could be effecting my heart and lungs.

Too bad it took three days in the hospital to finally have some answers.

Peace,

 

[dwfreck]

KimC,

I'm sorry you had an episode in the middle of Christmas shopping and ended up in the ER and the hospital for 3 days. I can't imagine how such an occurance would affect my family, especially my 6-year-old. I'm also sorry that the "answer" is hypothyroidism, because you don't really need another medical condition on top of your heart condition. I know all too well how frustrating it is to feel like I can't do anything because of I might get SOB, and to feel so tired during the day that I want to go back to bed.

But, to look on the "bright" side, you now have an explanation of your chest pain, and, hopefully, some sense of how to avoid it when you can and to deal with it when it occurrs. I don't know anything about hypothyroidism, but I would expect it would be treatable, either with medication or with surgery that is somewhat less complicated than open-heart surgery.

As for the confusion, shock, tiredness, and sickness of white coats, that all seems a very normal reaction to unexpected bad news. However, please remember that the white coats didn't give you hypothyroidism, they just delivered the message. Also, with respect to having a RESIDENT tell you the results, what's the big deal? Every single doctor in the US was a RESIDENT at some time, all RESIDENT doctors are, in fact, doctors, not students, and, in my opinion, all RESIDENT doctors are just as qualified to tell you bad news as any NON-RESIDENT doctor. Oops, sorry for the lecture. I'll climb off my soapbox now...

 

[Karlynn]

Kim,
Sounds like this was a mixed blessing. It had to be very scary for both you and your daughter, but you acted quickly and were able to be seen during the episode. Good thinking! I'm so glad you didn't hesitate. I had a few episodes that landed me in the ER prior to my replacement, and my children were very young at the time. They still remember it.

It sounds like they did a good work-up on you. If you are unsure of the correctness of the diagnosis, get 2nd or 3rd opinions. Which would probably be a good thing even if you are sure.

I know hypothyroidism can cause arrhythmia, but I've never heard that it causes chest pain. Doesn't mean that it doesn't, just that I've never heard that before.

I'm pryaing that the rest of this holiday season contains only joy for you and your family.

Karlynn

 

[KimC]

Dale, I hear you re: white coats. I was venting. I'm a little embarrassed, too -- I've never been to the ER.

I have some good "white coats" looking after me, so I'll be more careful not to bash doctors. I really have nothing against residents either. I was frustrated that the one who told me the bad news wasn't more informed. I felt that I deserved better than that, considering the stress of the hospital stay.

To that point, thanks for your kind words on how the hospital stay affected my family ... I'm still dealing with that. My six-year-old will not leave my side at the moment, and has said some amazingly insightful things. She has an old soul.

Karlynn, thank you, too. Re: the chest pain -- it was fluid around the pericardial sac. If I bend over, it hurts and can make me short of breath.

Hypothyroidism can be treated with meds. Hopefully, it will reverse the symptoms.

God bless,

 

[Nancy]

Hi Kim-

I'm so sorry to hear of the scary incident. Coming in through the ER is an ordeal, but you were in the right place.

You are going to follow up with your cardiologist re: the diagnosis you got, since it involves your heart? Should serve as a double check and that's a good thing.

Wishing you an uneventful holiday season.

 

[Kenny F]

I have had surgically induced hypothyroidism since I was 12 (I'm 45). Thyroid diseases are very easily managed with a good endocrinologist. I lived in Charleston (Summerville) until 1995. See if Dr. Ken Gray still has a practice. Used to teach at Duke. Best endo I've ever had.

Hypothyroidism can definitely cause some heart rhythm issues. I half suspect my current tachy and a-fib is because my TSH has been poorly monitored in the last year. My insurance changes Jan 1 and I am going back to my previous endo.

 

[bvdr]

Kim.

I am so glad you went in to the ER and at least you know now that the things going on in your body weren't "all in your head".

Pericarditis can be very very painful. I don't know much about the hypo-thyroidism/heart problem connection but hope to learn more about it now from you and the research this will spawn.

Please take care of yourself. I hope your valve problems do start to go away but I would feel very badly if you left this board.

 

[Kathy]

Kim,

It must be very difficult to be going through all the medical confusion as the parent of a young child. I'm glad you are at home again and hope that you can get some rest when you need it.

My 13 year old is still concerned. If I make a slight noise indicating discomfort she will yell from another room, "Are you okay?" Kids do have a hard time expressing their fears and concerns.

 

[dwfreck]

Kim,

I understand venting, I called my surgeon an ***** in this very forum! Then several very wise people added their advice and helped me to calm down and focus on what I really needed to get done. It's my privilege to return the favor.

As for the frustration of visiting the ER, I can relate to that, too. As a patient, I've been in twice (not recently) with abdominal pain so severe that I was sure my appendix had ruptured, once after a head-on traffic accident, and once after drinking way too much alcohol (I was younger and dumber). I've also visited a few times as a parent of an injured child. The ER has its own weird social order and "political" system, and is very different than the usual doctor's-office-visit experience. I wasn't particularly embarassed about any of those visits except the alcohol-related one, because I took the time, at some point, to check my insurance carrier's standards for what counts as a "legitimate" reason for an ER visit, AND I asked my family doc and my cardio what they thought should count. Sudden, unexplained chest pain definitely counts!

As for having a six-year-old with an old soul, I can really relate to that. I swear sometimes my son is sixteen instead of six. Then I see him crawling across the floor pushing a four-foot stuffed Charizard (think Pokemon!) toward his sister and growling.

Hang in there. Also, if you've seen "Finding Nemo" (which I assume you have, since you have a six-year-old), remember Dory's annoying little song, "Just keep swimming..."

 

[KimC]

Nancy,

I am definitely following up w/ my cardio, especially re: the SOB during the stress test. That was the first time I became utterly desperate for air. And it was not fun. I'm still unsure what it means exactly. The cardio from MUSC is supposed to call me back today with more info. I'll keep you posted.

Kenny,

I'll check out your recommendation re: the endo if it becomes necessary, thanks. I'm supposed to have another blood test in 6 weeks. If it's positive, then I have chronic thyroid disease. Again, it could only be acute, i.e., due to the pregnancy. Sorry to hear that you've experienced some of the same things.

Betty,

Thank you so much. You don't know how much your words mean to me. I don't think I could leave this board -- even if I don't fit the classical criteria for a member! BTW, the valve regurg is here to stay, (at least until I have surgery one day) but the sinus bradycardia, arrythmia, etc. may go away over time with thyroid meds.

I know I haven't earned my VR.com stripes, but I've grown to feel a part of this community. Y'all are amazing human beings. As long as Ross doesn't kick me out, (which I know he won't) I'll continue to contribute, hopefully in a positive way. You've become my extended family! It has been very helpful for me to talk through my fears, support others and research info.

Kathy,

My six-year-old kept looking at my EKG on the monitor while I was in the ER. I don't know where she learned it, but she anxiously watched the lines go up and down, fearing a flat line. She knew what that meant, and as much as I tried to protect her, she proved to be too smart. I feel guilty that she was there, but knew I did the right thing for her in the long run.

Dale,

I have one thing to say to you: GO BIG RED! (I'm an Indiana Univ. grad.) ;-) Thanks again for your support. I hope you start to feel physically better after your upcoming surgery. I can't imagine how you and your family must be feeling emotionally, but know that you will be fine. I will keep you in my prayers.

God bless and Merry Christmas,

 

[sylviayasgur]

h kim,
i'm so sorry you are going through all this.... how frightening.
joey has an underactive thyroid (i guess that's hypo-).
when they first discovered it about 11 years ago, they weren't sure what was wrong with him. he started feeling very tired, achy, arthritic, and extremely lethargic. he gained weight and his workouts became very difficult. the only thing in his blood workup that indicated that something was off was his enzyme levels (indicating muscular distress_ so they , naturally thought it was his heart). did all kinds of tests, but did not come up with thyroid.
a few days later he was sent to a rheumatologist/immunologist since no one could find anything .
he must have done a 3 hour thorough exam of joey, even checking under his finger nails, i remember!
a muscle biopsy was scheduled for the next day. that night the doc called to tell us that he had done some very specific thyroid tests and found that was where the problem stemmed from. thank God no biopsy was necessary, just synthroid.
to this day, when joey's thyroid levels are off, he often gets flutters or has afib.
on the other side of this all, one of his closest friends (who has no heart problems) started losing weight and feeling very agitated. tired, but unable to sleep. they found it to be hyperthyroidism. well, needless to say, he went into afib and has been to the er numerous times. they put him on meds and treated his thyroid with radioactive iodine (i think) in order to "incapacitate it" so that he will take synthroid to regulate it once it is inactive.
either way, hypo or hyper, this does affect the heart.

please let us know how things go for you. this is certainly treatable, right?
wishing you all the best and a happy and healthy holiday.
feel better, sylvia

 

[ccrawford]

Kim - glad you found out what the problem was, sorry you had to find out the hard way, but that's how it goes. Maybe you'll get some better news next exam. In the meantime, have a good holiday - Oh by the way, the Boilermakers are going to kick I.U.'s behind this year ! Chris

 

[KimC]

Top 5 Lessons Learned About Health Care

Top 5 Lessons Learned About Health Care

Sylvia:

Thank you so much. I'm sorry to hear that Joey went through the same kinds of agonizing misdiagnoses. Yes, Hypothyroidism is treatable. I have an appt. with my PCP on Mon. to chat about synthetic hormone therapy. (Christmas, what?s Christmas?)

I?m so ready to put this year behind me. Now I'm at peace, even with the knowledge of the road ahead of me. God is my Light.

Chris:

Boilermakers, Schmoilermakers! IU will never recover from the loss of bad old Bobby.

Thanks always, though.

All:

Part of my "discharge order" was to see a pulmonologist for Pulmonary Function Tests; I had already set up an appt. before my trip to the hospital, and saw the doc yesterday. He diagnosed me with Asthma ? not Chronic Bronchitis. The asthma explains my chest tightness and SOB. He prescribed a steroid inhaler along with the Combivant.

Anyone diagnosed with asthma prior to valve surgery?

Apparently, untreated hypothyroidism can cause inflammation of serious organs. I'm still learning about the disease, but so far it could explain my heart, lung and GI issues. I hope no permanent damage has been done.

My local cardio had an "Ah, ha!" when I called and told him the news. I'm disappointed that he didn't figure it out earlier.

For what it?s worth, here are my Top 5 Lessons Learned About Health Care:

1) Medical Science is not and will never be perfect;

2) Doctors aren?t God. Many things cannot be explained. However, some things can be, if you?re willing to persevere and be patient (and poked and prodded).

3) All disease is idiosyncratic;

4) Major tertiary centers are better at diagnosing rare disorders;

I imagine great stories exist about small medical facilities ?saving the day,? but my advice to anyone reading this post:

If you?re feeling sick and know that something's not right, but your doctor can't figure it out ? head to a larger medical center. I'm not suggesting that all symptoms or illnesses will have an organic cause. But larger medical institutions see a variety of patients and are better equipped to diagnose complex diseases.

5) Doctors are human and will base part of their diagnosis on appearances. Be assertive and confident when you speak to your doctor. Where I live, I'm "too young," i.e., blond and attractive ? to have any major health issues. Shake the tree, but do it with tact, grace and confidence.

My .02 on a cold, sunny day!

Have a merry, merry!

Peace to all ?

 

[dwfreck]

KimC,

Your top 5 lessons are HUGE and deserve to be highlighted in their own thread! I thought I had learned them already (I've been poked and prodded all my life, after all), but recently discovered that I thought all surgeons were God, so they deserve repeating. Perhaps Ross can offer a recomendation on where to post your lessons...