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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.  

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by peggy64, Sep 24, 2009
I am so happy for you. This dr sounds like a rare treat, indeed.

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by TrudieC, Sep 24, 2009
Wow, what a gem you have!  I've never heard of a doctor even mentioning all those nutrients let alone testing for them.  Again, wow!  

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by lvfrogs, Sep 24, 2009
I can't believe you have been through all this and just wanted to comment on how lucky you are to have found this doctor. I wish I had him. I have similar issues as you - on thyroid medicine, a heart murmur, leaky mitral valve, cardiac spasms, EBV and Chronic Fatigue Syndrome. I wish I had a doctor that would check all the levels of the other nutrients/vitamins. I do believe they all play a part. But I am very happy that you have finally found someone who listens and believes. So important. Please post again and let us know how the tests come out!

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by Barb135, Sep 24, 2009
Thanks everyone - I'm really excited about it.  For the first time in a long time, I feel like we might actually get to the bottom of things.  It will be a while before I get results back and everything, but at least I feel like there is a reason to be optimistic...

Avatar universal
by Kristy2000, Sep 25, 2009
Yes, please let us know how your tests come out.  Have you ever investigated adrenal fatigue?  I've been reading up on that lately and wondering about it myself.  I also have the valve regurgitation - both the mitral and the tricuspid, as well as aortic valve thickening.  All 3 things are apparently very mild and except for the aortic valve thickening weren't even mentioned by my doctor.  Perhaps it's more common and "harmless" than I think?  Anyway what is it with doctors??  Are some of these areas of study - thyroid, b12, micronutrients, fatigue, etc. still new to science??  Do most people feel like "pooh" most of the time and we're the only ones to complain about it??  I seriously doubt that, but I'd love to hear your thoughts.  Hope this new doctor works out better than the last!

Avatar universal
by mayhem1234, Oct 15, 2009
hi all I to have been to hell and back. I have had m.e cfs for 13 years now. and this year I HIT ROCK BOTTOM started having heart problems shortness breath dizzy spells numbnes and a lot of chest pains and alot more symtoms witch got me to papworth after lots of test i have a moderate aortic valve leak but i have been told this wouldn't cause all my symtoms . and this week my b12 bloods came back  low and i have to have the jabs  im so fed up of not realy noing whot is really wrong with me. doc just dont care you have a 10 min apointment and then you get forgottin I just wont to be normal i feel like given up but i have 4 great kids and a great husband so not an option .but i dont see light at the end of the tunnel and i bet there more out there who feel the same as me i hope you get sorted you have a great doc now so fingers crossed.

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by Barb135, Oct 15, 2009
mayhem1234 --- I'm sorry that you have been through so much.  I, too, have a leak in one of my heart valves, which was not an issue before, but the doctor can now hear a murmur, so I am scheduled for an echocardiogram on the 23rd of this month to see if the leak has gotten worse.  I suspect it has.  

If your b12 levels were low, that could have a lot to do with the way you feel.. It will take a while - several weeks - before you will notice much difference, but the shots aren't bad.  I do my own, every 2 weeks, so I don't have to make a trip to the doctor's office and pay them $25, when I can get enough vit b12 at the pharmacy for a co-pay of $.89 for 10 shots and $.25/needle.  

You don't say if you've had your thyroid checked.  You should ask for TSH (thyroid stimulating hormone), Free T4 and Free T3, which are actual thryoid hormones.  You could also ask to be tested for antibodies to see if you have an autoimmune thyroid disease.  Being hypo thyroid can also cause a lot of weird stuff.  Just keep bugging your doctor until you can get tested for things that might be wrong and if s/he won't help you, it might be time to find another doctor -- that's what I ended up doing because I was in the same boat you are.  Keep working on it --- let those 4 kids and great husband be reason to keep trying.................

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