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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?  

A New Doctor and MAYBE Things are Looking Up!!

Sep 24, 2009 - 7 comments

Well, I debated on whether or not to post this on thyroid or just what so I've decided on a journal entry in hopes that it will get to everyone.  

As many of you know, I had finally decided to kick my pcp to the curb because he was doing me more damage than good.  I found a new pcp, who I've heard wonderful things about.  I had my first appointment with him yesterday afternoon and I must say --- I was totally and completely surprised and more than satisfied with the outcome.  I can't help wondering if I have finally found my "Dr McDreamy"; although I've found that I have a long way to go yet ----

This doctor spent more time with me in this one appointment than my previous pcp has spent with me in the last 10 appointments...........

The good news is that I have totally right all along that there is more going on than thyroid issues and that contrary to what my former pcp has been telling me, there IS something wrong with me and it's not all in my head!!

I had spent the evening prior to this appointment making copies of all my lab reports for the past 2 yrs, along with a list of all the doctors I have been sent to, who sent me to them, why and the outcome(s).  It was well worth the time.  Because of time constraints, patients are asked to keep each visit limited to 3 concerns........I actually did better than that and kept mine to 2 concerns, but it was great plenty to get me started on the next leg of my journey.  

The first issue I addressed was the pounding heart that caused my former pcp to declare "there's nothing wrong with you"!!  Well, I beg to differ.  In Dec when I had the echocardiogram it was discovered that I have a leaky heart valve but the cardiologist was not concerned about it at that time because it was very slight and he could not hear anything when he listened to my heart.  We did schedule another echo for a year - which comes up in January.  Well, in the course of the exam yesterday, I was telling the doctor about this echo/leaky valve thing.  Upon examination, he asked if the cardiologist had happened to mention *which* valve was leaking and I said "no".  He then asked if the cardiologist had mentioned anything about the aorta.  I said "no, why".  He then proceeded to tell me that he can hear a murmur there.  Since heart problems run rampant in my family, he was very concerned about it.  Well, he want to put me in another 24 hr holter monitor, so I will go in on Tues to get that put on and it will come off on Wed.  I'm not looking forward to that because remembering when I had it before, it's totally miserable!!

The other issue I addressed with him was my continuing fatigue.  I told him that my thyroid levels are about right now, and I no longer feel that is causing the fatigue.  He totally agreed with me.  We looked at the lab reports I had taken with me and I pointed out a few things that had concerned me but had not been followed up on by my former pcp.  I had to be sort of careful because this doctor USED to be an associate in the office of my former pcp and I do not know what their current relationship is.  

Anyway, I do have pernicious anemia and take the b12 shots AND I've recently learned that I'm deficient in vitamin D.  He was not wholly trusting of the results from the “D” test I had done so he ordered another vitamin D from my lab.  I also asked for another calcium since my last one a couple yrs ago was very "high normal" --- so yes, that's on the lab order, along with metabolic and lipid panels , CBC, another B12 test (which  my former pcp said was "okay" since it was 600+ at last test - "normal" range is 200-1100).  

He looked at the CRP that was done last year and because it was high (also never followed up on), he recommended that I start taking CoQ10 in an effort to bring it down.  AND in view of the b12 and d deficiencies, he has recommended a "micronutrient" test to see if I'm deficient in anything else.  That test will cover vitamins - A, b1, b2, b3, b6, b12, c, d, biotin, folate pantothenate; minerals - calcium, magnesium, zinc, copper; amino acids - asparagine, glutamine serine; antioxidants - alpha lipoic acid, CoQ10, cysteine, glutathione, selenium, vitamin e; carbohydrate metabolism - chromium, fructose sensitivity, glucose-insulin metabolism; Fatty acids - oleic acid; metabolites - choline, inositol and carnitine; it also tests for antioxidant function.  This test tells whether the body is actually using the nutrients.  

I had also mentioned a high ferritin on a test from a couple of years ago (again never followed up on) and he said that ferritin levels have to do with the way the body uses sugar and insulin and it’s often a factor in diabetics, something else my former pcp wouldn’t consider…….

I had also taken with me a record that I had been keeping for some time with my blood sugar – most concerned about fasting levels.  In this record, many of my fasting blood sugars were high (over 100 – some as high as 120).  I had tried to show this record to my former pcp last year and he refused to even look at it because my glucose tolerance test came back “normal” AND he said that the glucose meters you buy in the drugstores are “so unreliable, they shouldn’t even be sold”… the doctor yesterday, did not question the meter I used or anything – he looked at the results and said “we need to follow up on this and keep a watch on it”……what a difference!!  

Anyway, I know that I have a long way to go to get through all of this and it’s going to take some time, but at least I’m not being “brushed off” or even worse than that - being told “there’s nothing wrong with you”……………he didn’t look at me like I had totally gone off my rocker or am a hypochondriac or anything like that --- how refreshing.  I finally feel like I have someone who will not only help dig to the bottom of “pit”, but will be there to help me climb back out again too…

Maybe I’ll be able to stop feeling like, well, the “barnyard stuff” yet.  

My Thyroid Journey.......

Sep 18, 2009 - 21 comments

As most everyone knows, I’ve been around on the forum for “a while”.  I read the posts of people that are newly diagnosed and I see myself so clearly in THEIR posts.  

I had felt like "barnyard stuff" for so long and doctors kept blowing me off, then all of a sudden, there was a diagnosis and we know WHY I feel this way --- give me that pill and let it work NOW.......and how disappointed I was when I took the first pill and an hour later, I still felt the same.......OF COURSE, I'd been told it would take several weeks, but I was so totally desperate and did not want to wait “several weeks” –  I just knew this “magic pill” was going to work better and faster for ME than it had ever worked for anyone before---that’s “desperation”…

Can you possibly imagine the devastation I felt when after several days, I wasn’t jumping for joy over how good I felt??  Yes, I *KNOW* it’s supposed to take several weeks --- but that’s for YOU, but not for ME ----  then all of a sudden one day, I looked in the mirror and realized that the bags under my eyes were gone – those bags that the doctor said was from not enough sleep (I was sleeping 12 hrs at a time for heaven sake – how could I not be getting enough sleep??).  Then I noticed that my hair didn’t fall out quite so bad, but I still didn’t FEEL GOOD………..

Then putting up with the remarks from my husband and co-workers, like “well, you take medicine for that, you can’t still feel THAT bad”………I kept pushing myself every day to “get up, go to work”.  Getting home in the afternoon was the hardest part – just let the red lights last a few minutes longer so I can get in a nap, then I’ll be fine”……..oh, when I think of that now, it scares me to death……..I still have those days every now and then and yes, it still scares me to death…………

My pcp was absolutely NO help and got just totally irate when he found out I was doing research on my own, would not listen to me at all, just totally discounted my symptoms with a wave of his hand and an arrogant “THERE’S NOTHING WRONG WITH YOU” and he was out the door.  That anxiety just about did me in – the fear that the one person I trusted to help make me better was pretty much calling me a hypochondriac.

Then his nurse practitioner panicked over a couple of things that were totally thyroid related, but SHE didn’t think so…….one was the pressure, choking, pain in my neck – SHE thought it was related to surgeries that I’d had on my vocal cords.. I tried to tell her that was not right, but she wouldn’t listen, so I let her send me back to the ENT that had done those surgeries in hopes that he would be able to help me with the REAL problem.  Oh, what a dear man he was..............

From there, I got the Hashi dx, referral to endo --- that part is history……oh – she (NP) also freaked over my low heart rate (holter monitor showed appox 35 bpm during sleep); that resulted in a referral to a cardiologist – another  hypo symptom, but stroke of luck for me because the cardiologist wanted a stress test (passed with flying colors) and an echocardiogram – oops, shame on pcp cuz he really got angry over that referral, but it showed that I have a leaky heart valve that, although is not serious at this time, definitely bears watching……

Also in there, the ENT sent me to a gastroenterologist (pcp wouldn’t think of THAT either) because I had acid reflux and used the strongest acid reducer for over 8 yrs and ENT was concerned about what that might have done to my esophagus.  Well, of course the gastroenterologist wants to “burn the candle at both ends” – which showed my esophagus was ok (thank you God), but I had polyps on my colon --- oops, another shame on pcp - fortunately, the polyps were removed and found to be benign.  Oh, forgot to mention that I have one brother who had esophageal cancer and another with colon cancer --- oops, another shame on pcp for not thinking there was a need to check those things………..

I got to a point where I had to force myself to stop thinking about how BAD I felt and concentrate on "getting well"........I began to realize that my anxiety over not feeling better "right now" was actually contributing to making me feel worse --- every little twinge of pain, different tingle or whatever happened to my body seemed to be magnified at least 100 times, so of course I felt worse --- and worse -- and worse........yes, if you think about it, it DOES make sense!!!  

I’m currently dealing with a co-worker who, almost every day, IMPLIES that I’m a hypochondriac………

One day, I mentioned that I had to go for blood work the next day – she looked at me and said “why, didn’t you just go for blood work?”.  I said “well, it’s been 6 weeks”.  She said “why would go that often unless you just like to have blood work done?”……I said “I have to have regular blood work in order to adjust my med(s) right”.. She gave me the blankest stare I’ve seen in a long time………

Then the other day, I wasn’t feeling very well and I mentioned a “Hashi attack” – she looked at me and said “now wait a minute --- I *KNOW* there’s nothing “attacking” you.  I had to stop and explain that, as *I* understand it, the antibodies are attacking my thyroid, but sometimes, they sort of go into “remission” and during THOSE times, I feel pretty good, but then all of a sudden, for some reason I don’t understand, they “kick up their activity again” and I feel like  --- well, barnyard stuff – for a few days….

Yesterday, I mentioned to this person that I was thinking of going gluten free and of course she couldn’t imagine why -------- oh, I must tell you --- she is about 5’ tall (my height) and weighs – I’m not sure, but thinking it has to be around 400 pounds…AND she has fatty liver disease and refuses to get blood work done when she's supposed to...go figure.....I tried to explain to her about vitamin deficiencies and how the stomach lining can become damaged by gluten, etc (yeah, I’m thinking celiac) ---- she just looked at me again with that blank stare…….

Topped off today when I went into her office, where our dept coffee pot is and I was cold so had put on a long sleeved tee shirt…….She looked at me and said “WHAT are you doing with a sweatshirt on?”.  I said, “it’s not a sweatshirt, it’s a tee shirt and I put it on because I’m chilled” ---- She said “there’s no way you can be cold when it’s 70+ outside and about the same in here”…………There was nothing I could do but shrug my shoulders (movement helps warm me up…lol) and leave her office because I wanted to say “nasty things” to her……..
I have to be honest --- I feel SO much better than I did in 2007 when I was dx’d with pernicious anemia…….started on B12 shots and got SO much better, but still couldn’t stay awake; begged my pcp’s nurse practitioner for thyroid tests and here I am.  

My journey began and I guess in my mind, I know  it’s NEVER going to end, but I keep thinking that I felt like “barnyard stuff” for SO many years – I just don’t want to stop searching for answers until I feel “good”.  I’m 60 yrs old and feel better now than I did when I was 40 --- I can’t help but think I can actually get to the bottom of the things that have been wrong all these years, making me feel so badly ---

Am I a hypochondriac??? I don’t think so --- if I don’t feel good, I don’t feel good – there’s nothing wrong with trying to feel better, is there???????

Health CARE Reform or Health INSURANCE Reform?

Aug 02, 2009 - 0 comments

Well, I've been pondering this question, and yes, it's been on my mood for several days, because I'm really concerned about the concept of this.  

It was always MY understanding that the biggest problem with the cost of health care IS the cost of health care and that the goal was to provide *affordable* health CARE to every American citizen........ What happened?? Did I totally miss the concept??  

Everything I hear on the news, read, etc talks ONLY about heath care INSURANCE costs and providing *affordable* INSURANCE  for every American citizen - well, THAT isn't entirely correct, because we are actually providing health care to as many (or more) non citizens...........

This concept of only worrying about whether or not everyone has insurance is just totally foreign to me....... If the cost of the health CARE itself were affordable, we wouldn't need INSURANCE so badly, now would we??  

I'm older than a lot of people who post on MH and I can remember when the cost of a doctor visit was between $20 -$40 and we didn't worry so much if we didn't have insurance because the care we received was AFFORDABLE.  Yes, I KNOW that the care is more specialized and some procedures are extremely costly.  Doctors/hospitals have to pay for equipment, and personnel to operate the equipment, then other personnel to read the results, etc, etc.  So why not change the system a bit??

If I go for an x-ray, MRI, etc - the technician is NOT allowed to tell me what s/he sees - nope, I have to pay for someone else to make a determination as to what's seen, then send the results to my doctor, then pay my doctor yet another fee to actually TELL me what the finding is........... Now through this process I've had to have 3 different appointments and 3 people involved in the process: my doctor, the technician, the person who reads the x-rays (I guess this is another doctor), then back to MY doctor again......... By the time it's all said and done, either *I* or my insurance company (usually both) has paid out several thousand $.  

Of course, the insurance companies don't want to insure people with pre-existing conditions because those people are expensive to have on the list........... a diabetic requires constant meds, and there's all kinds of complications if the patient doesn't do what they are supposed to; a heart patient - again, meds and possible complications; cancer patient - same story, plus the possibility of recurrence.  This is all understandable.  

What I don't understand is why *they* can't put a cap on the cost of some of this stuff in order to make the care affordable........... Take an MRI for instance - they know approximately how many uses a machine will get - so take the cost of the machine and the cost to operate it (including personnel), divided by the number of uses, + a small profit for the facility providing the machine and make it stop there.............. Train the technician who's doing the procedure to recognize the problem and allow them to tell me on the spot "I see a dark spot on your lung that your doctor will need to have checked out"........... Hey - that works for me --- I go home KNOWING, either, there's something that needs follow up or I've got no problems.  That saves ME from having to worry about the findings for however many days/weeks it is until my doctor appt AND it saves BOTH me AND my insurance company another trip to my doctor so he can tell me the results that the technician wasn't allowed to tell me (but sometimes does anyway)..............Let's not forget how many hours I've had to take off work to accomplish all of this.  I have to admit, I'm one of the lucky ones that gets "sick leave" so I don't lose pay, but a lot of people don't get sick leave, so they just lose however many hours of pay it takes to get this done.............

Blood work - when I go for labs (I have thyroid disease so have to have labs quite regularly) - why can't the doctor just have the lab send ME a copy, I can look at them and tell by the way I feel, plus the lab results whether or not I need changes in med, then *I* can contact my doctor to actually accomplish the changes............. Actually, I currently have an endo who is requesting that the lab send ME a copy of the results - that way by the time I see him, I've already been able to correlate the results to how I feel and come up with the treatment *I* prefer and if he agrees - it's a done deal........ MY goal is to get him to let me do this over the phone (sure, I'd be glad to pay a small fee for a phone consultation) because every time I see my endo, it costs me $97.17 - they have that down pat.  Now keep in mind, that the $97+ that is costs is only MY cost - my insurance company is billed well over $200.00 and these appt's only take 10-15 minutes............. what an outrage........

My annual physical is another thing that burns my butt............. lab work is ordered and I make sure it's done in plenty of time because my pcp will NOT specify on the lab order that I get a copy...... Anyway, I go for lab work, then the day of my appt for the physical, I get to the doctor's office for the appointment (I'm always early) sit in the waiting room for anywhere between 20 minutes - 2 hrs, finally get called back to an exam room, the nurse checks my weight (always too high), blood pressure/heart rate, verifies my meds, then says "the doctor will be in shortly"...... then I wait THERE for another 20 minutes to an hour before the doctor FINALLY comes in........ HE kinda/sorta/but not really     looks at what the nurse wrote down (weight "hm, I see you gained another 5 pounds - you need to MOVE more"; bp/hr)....... Then he grabs a popsicle stick and looks down my throat, shines the light in my ears to see how much wax I have, thumps either my knee or elbow to check reflexes and says "Well, everything looks good - here's a copy of your lab results.......oh your cholesterol is high, I want to give you a script for Crestor".............. yep, has to be name brand........ THEN he says - "you can't take the generic thyroid med - it HAS to be Synthroid"........... "Good bye, have a nice day"           And for this he charges $300??????????  

Well, I'm good to go - I pay my $25 copay and go my merry way, but then at the end of the year when my employer has to come up with insurance options - amazingly, the rates have almost doubled from last year......

Well, it's no wonder.............the costs of the procedures go up, the cost of insurance goes up........

These are MY views/concerns about this whole thing - yes, EVERY single person in this country should be able to get affordable health CARE - but WHY should *I* and my husband who work hard for what we have, have to pay for health INSURANCE for someone who COULD, but WON'T pay for it???????? This is totally against everything that my dad and my brothers fought in WWII, Korea and Vietnam to prevent...........

Curb the cost of health CARE and the cost of INSURANCE won't be such an issue............ Just my tiny mind's simplified view of things.................