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Medical Issues and No Answers Yet

Nov 10, 2009 - 7 comments

Well, I have to say how much I appreciate all the notes and PM's from everyone about my doctor appointment yesterday.  I was pinning SO much hope on the report of the echocardiogram and it seems like it was all for nothing; yet I don't understand enough about heart issues to really know what it all means.  

Maybe someone out there will understand better than I do.......??  

Here's what the written report says:

1) LV size, wall thickness and systolic function are normal.  ----                  (yep, that sounds good)
2) Mild to moderate aortic regurgitation.    
3) There is mild mitral regurgitation.
4) Mild tricuspid regurgitation.
5) There is mild pulmonary hypertension.
6) The ascending aorta is borderline dilated measuring up to 3.9 cm.       (This one didn't sound so good)      
7) EF is greater than 70 %.                                                      (From what I could find, this is good too.)  
The pulmonic valve was not well visualized.

So -- there's at least 3 leaking valves, plus the dilated aorta and they tell me this could not/would not cause me to have the pounding heart beat, fatigue, shortness of breath, etc that seem to keep getting worse.  I can barely do anything without huffing and puffing with the least little effort.  I wake up in the middle of the night with this heart beat that totally "fills the room" and sounds like it came from a psycho movie. Sometimes it wakes me up around 11:30 or so - then I can usually go back to sleep, but if it's much later than that, I rarely go back to sleep.  I have to get up at 3:30 am anyway, so when this "thing" wakes me up at 1:30 or whatever, I might as well just get up, because the chances of going back to sleep are very slim.  Then of course, I'm dragging all the next day!!  

I've been on blood pressure med for years and was recently put on atenolol (beta blocker) for, what I thought, were heart palps -- but the doctor says they aren't palps, they are skipped beats. Is there a difference?  But what on earth would cause my heart to skip almost every other beat?  Anyway, the atenolol has helped with the palps/missed beats AND it helped bring my blood pressure down, BUT -- I have to cut the dosage in 1/2 now because it also lowered my heart rate too much --- it's mostly currently running in the upper 50's, sometimes raising to mid 60's and sometimes lowering to low 50's/upper 40's.  

Anyway, I have a very distinct "heart beat" in my stomach, so the doctor says that since there isn't anything wrong with my heart(?), he wants a CTA (not even really sure what that is) done to see if there's something below that's causing the trouble, though he didn't really seem to think there would be.  

We had also done a micronutrient blood test, which came back showing that I am deficient in several things -- zinc, oleic acid and glutathoine and that my total antioxidant function is deficient.  Again, he sent me home with a ton of vitamins, etc, but doesn't think this will cause my symptoms.  

There were 2 things that he suggested -- can't imagine why either of them would have surprised me, but they did!!  

One thing he suggested is that the shortness of breath, pounding heart, etc could be caused by thyroid -- he's right, it could but I don't think it is.  He "insisted" and *I* don't agree, that I'm hyper and the dosage of my thyroid med is too high -- yep, he's basing that on my TSH level, which is 0.02 (very low), BUT my FT3 and FT4 are both right at mid range.  He said for me to lower my T4 med, but I'm not going to do that --- I worked too hard and too long to get those levels up there and I'm not taking a chance on messing that up.  Besides, this is NOT the doctor that's in charge of my thyroid issues and it's not HIS decision to make.  

The other thing he suggested is that these symptoms could be caused by we go with THAT diagnosis -------- if all else fails, blame it on anxiety/depression!!  I'm not saying that all of this isn't CAUSING anxiety, because it certainly is.  I've lost both my natural parents, and an older brother to heart issues, plus another of my brothers has had to have stents put in, etc.  so of course, any mention of heart issues, certainly gets my attention.  The thing is --- I began having the symptoms, long before anyone even CONSIDERED that I might have a heart problem.  Everyone, including myself, put it down to thyroid, thinking the symptoms would ease, whenever my thyroid levels got in line; well, now they are and those symptoms keep getting progressively worse - particularly the shortness of breath.  I keep wondering if I'm missing something with the thyroid, but can't for the life of me think what it could be.  

The one thing we both agreed on is that my weight could have something to do with the shortness of breath, etc.  I have got to sit down and come up with an eating plan that I can stick with.  HE told me get a book called "Miami Mediterranean Diet" -- that's all well and good, I eat a lot of things that lean toward the Mediterranean type diet, but I know I can't live on fish and chicken for very long ------ and I also know that whatever I come up with HAS to be something I can live with.  And then there's the exercise -- gotta get back into that but because I get so short of breath, it's been really hard to maintain a program.  

But here's a dilemma --- last year, I was sent to a cardiologist, who did a stress test and echocardiogram.  HE'S the one who found "a leaky valve" -- but he didn't tell me which valve it was.  The last time I saw him was in Jan of this year and he said that the leak was "insignificant" and that he wanted to do another echo in 1 yr, so they scheduled an appt for Jan 2010.  Well, recently when I started going to this new pcp and told him of the symptoms I was having, he wanted to do an echo.  I told him that I have an appt with the cardiologist in Jan and he said "no, we don't want to wait that long".  Then I suggested that maybe I call the cardiologist and try to get in sooner.  Again, he said that wasn't necessary.  So, I went ahead and proceeded with the echo, etc.  Now, I'm finding that this is most likely NOT the problem, but it's still scaring the daylights out of me, because of course, my pcp is just THAT -- he's not a cardiologist.........AND when I saw the cardiologist, he said I had ONE leaky valve; NOT 3.....

I'm trying to decide what to do about the cardiologist -- I mean I'm sure my insurance is not going to authorize another echo that soon and I don't even know if I NEED another one that soon.  Probably, what I will do, is call the cardiologist after I get through this CTA scan and send him the findings, then let HIM tell me what to do.  Of course, I will give him permission to get the records from my pcp......I don't know what else to do.........

I hate for this to be happening -- I mean after all I've been through with the pernicious anemia, then the thyroid issues, I really DO feel so much better than I did for a lot of years and at times I have all kinds of energy and really WANT to get out and do stuff, now I can't breathe -----------

Anyone have any suggestions??  Am I truly losing my mind??  Am I only IMAGINING that I can't breathe whenever I try to walk very far or do anything strenuous??  Do I just need to push myself harder in hopes of building back my breathing capacity?  

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483733 tn?1326798446
by TrudieC, Nov 10, 2009
Barb, I'm so sorry you still don't have the answers you need.  How frustrating!  I wish I knew more about this area but unfortunately all I can offer is my ear and my hopes and prayers that you find a resolution soon.  I really, really hope that the cardiolist can make some sense of the tests you've had.

Hugs, Trudie

657315 tn?1319491387
by twehner5, Nov 10, 2009
I, too, am sorry that your app't was disappointing and frustrating.  I had so hoped for answers, NOT more questions.  BUT, just like you would not consider allowing your PCP to treat the complicated issue of your thyroid, you are correct in allowing the final decision about your heart and how serious it is or is not to be made by your cardiologist.  

I will be praying for you.  I want nothing more than for you to feel better.  Take care!

649848 tn?1534633700
by Barb135, Nov 10, 2009
Thanks you guys -- er, gals!!      

I'm just so frustrated, I'm not sure which way to turn now.  When I read the symptoms of all those leaky valves, dilated aorta, etc --- everyone of them lists MY symptoms so it makes sense that with them all added together --- well, it makes sense to me -- and you are right twehner - I will make sure I send the reports I have to the cardiologist and let him decided what needs to be done.  

I'm just not sure which direction to turn now.........and I still haven't heard from the doctor's office about the CTA scan.  Another wait ---------- ugh......

458072 tn?1291415186
by peggy64, Nov 10, 2009
What is the cardiologist suggesting? is your thyroid levels to where you could raise your meds some? Hope you feel better, and get some answers.

649848 tn?1534633700
by Barb135, Nov 11, 2009
Peggy -- my pcp told me I don't the cardiologist right now ----- I had suggested that I call the cardiologist and get in sooner than my Jan appt and my pcp said HE could do all the necessary tests.........I'm really wishing I would have stuck with my gut feeling and called the cardiologist....

I did get a call today.  PCP wants me to have a CTA of my abdomen and they finally got insurance auth. this afternoon --- AFTER I called to remind them -- anyway, that is scheduled for tomorrow at 11:00, but unless there is something grossly out of line with it, I won't know anything until I go back in 3 months.  They certainly DO NOT like to give any info over the phone and he doesn't want to see me for 3 months...

As far as my thyroid levels are concerned, I don't think I need to increase my meds.  My TSH is only 0.02 and my FT's are right at mid range.  I'm almost beginning to wonder if I might need to drop down a bit, even though the heart thing is the only issue that indicates hyper.  I have to think about that for a while.  

621085 tn?1614300231
by tigerlilly5909, Nov 11, 2009
It's to bad that you are trying to figure out what to do when your doctors should be helping you figure out what's going on. This is one of the most frustrating things about health care. They want you to listen but they don't sit down and tell you what to do and when they do tell you what to do you need to go through another doctor to get it done and they want you to be the middleman. Your not qualified to be the middleman. If your one doctor has a suggestion for your other doctor he should pick up the phone after faxing the results to him and talk to him about it. It's sad that will all the care out there your the only one that really cares. You shouldn't be your only advocate. People need more personal care than that. I'm very lucky to have a doctor that seems to want to work with me and lets me know when he doesn't have an answer. If it's in your gut do not ignore it. I'm glad that your at least keeping up with them. The squeaky wheel gets the oil. Don't stop looking for an answer. You deserve to know how to take care of yourself and what you dealing with so you don't have to be afraid.

Feel Better Soon,

649848 tn?1534633700
by Barb135, Nov 12, 2009
Thank you tigerlilly - A lot of us have learned the hard way that we HAVE to be our own advocates, otherwise we get lost in the shuffle.  Most doctors have their own ideas, depending on what they learned in med school and way too many of them are determined not to change their minds.  

I will go for my CTA scan today, then in about 10 days or so, I will call the doctor's office and ask for results.  The person who answers the phone will very snippily tell me that SHE can not give those results; I will very sweetly say "I understand that perfectly. Would you please ask the doctor, nurse or someone else who IS authorized to give results, to please call me back.  Thank you".............

If there's a problem, I'm determined to find it.  

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