Cardiologist / Internist Appointment Outcome

I am a little distracted by personal issues tonight and was feeling sick last night so going to post how the appointment went yesterday.  I may have to come back and edit it as I remember things later on, as I said, not really having a good night (Nothing is wrong, just emotional wrongnesss and frustration levels are high).

So I had my appt with Dr. C yesterday.  I did a post about all the things that had happened since I had last seen her (that post is here).  Going to kinda follow that post and address what she said about the things I mentioned and then go into what she felt was the biggest issues I am dealing with (not impressed!!!!!)

1) MRI & Neuro - Was happy to know he agreed on the autonomic dysfunction but agreed with us that even though he told me it was just excessive sweating in normal sweat areas (that's why I don't sweat below the waist) she thought it was B.S. as well as that just doenst make sense.  She is glad that my herniated disc isn't at surgery level and that I had a basically normal flow of CSF.  Not much else said about that.

2) Medication & Sweats - She was very happy to hear that I was able to go for two months without sweats.  However she agrees that most likely I grew tolerant to the medication really quickly and that we potentially could try swapping in one medication in the class with another medication in the class but it wouldn't be as seamless as the pain medications go.  I would have to take the medication, taper up to the dose that is required then when it started to stop working I would have to taper back down to zero before starting the path with another medication.  We did have some 'conflicts' in dealing with my use of this medication but I will get to that at the end as it ties in to her version of 'the big picture' (can you sense sarcasim?).

3 & 4) Osteoporosis & Knee Issues - Didn't really affect her, she just asked when I do my scans to watch for the osteoporosis and I told her I do a full DEXA and bone scan every two years through Dr. W.  The knee issue doesn't really apply to her (except if I have surgery, more on that on it's point).

5) Cardiac Work-Up - NO mitral valve prolapse which is really really good news!  She also made very sure to inform me that they are starting to realize that a high pulse rate (sinus tachycardia) in and of itself is not harmfull to the actual heart.  This means that the high pulse is not doing any damage to my heart or muscles and that the only reason I need medicated for it is because of the symptoms I show when not on a beta blocker.  She asked what tests I need regarding the heart and how often they are recommended so we are going to continue with yearly echocardiogram and EKG's with the occasional every 2 or 3 year with a holter monitor (unless I come up with other symptoms of course).  She refilled my beta blocker medication, was glad it is working better and they will contact me next year to set up my annual check-up

6) Dental Surgery - I told her all the story about dental surgery, them having me take a beta blocker right before surgery and the major blood pressure drops I was having and then tentativly said that I while going through it I basically took blood pressure readings a few times a day and based my dosage on that.  She said that while not usually advised for most patients (messing with their heart medications that is) that she feels I did everything perfectly and told me that I can adjust those meds if needed.  She said I had that reaction because I would have been fasting for so long which would lead to bad dehydration, and the anesthetic and stress (causing the autonomic issues to go into overdrive) in itself didn't help the matter.  She then told me that if / when I have surgery again I am to not take my beta blockers that day and to just keep a watch on my blood pressure and heart rate to juggle what dose I am needing.  Basically I can go with no beta blocker, I would just have the bad issues of lightheadedness, shakeyness and close fainting spells.  She explained it all really well - why the beta blockers aren't good with surgery - but I can't really remember what she exactly said, it just made a lot of sense and mom and I were happy to get her opinion on it (in case I need knee surgery :S )

And on to the last one, the one that is really bothering me and has taken me a few days to come back and write it up I am so upset about it.

7) Thyroid - This one was the very trickiest of them all by far.  When I brought it up she immediatly shot it down saying that my numbers were fine so that is what matteres.  My mom even brought up that she had heard about if your number is higher than 2.5 and you have symptoms that treatment might help.  She just said no and that my number was fine.  She asked why I thought it was thyroid so I told her the weight gain, thinning hair, trouble swallowing etc and she still shot me down.  I was frustrated at this point and was trying to sort out my words and then she comes out with she is very worried about me because my face is different than last time (facial expressions) and she thinks I am seriously depressed and that the weight, hair and other issues can all be from depression.  You get depressed so your body doesnt want to eat so it makes things hard for you to swallow (huh?)  She starts asking about my medications and noticed that I had crossed one medication off the list (It is a SSRI that we tried for the sweating) and really got into me as to how I stopped it, over what period of time, etc.  I tell her that I stopped it a week ago and basically took it as normal and then a week of every other day.  She just about flipped and said that that was not healthy and is probably why I am so depressed right now.  I told her I hadn't seen or felt any changes at all so she goes 'Can I ask that from your Mom?', I said yes and mom backed me up that she saw no changes at all from the medication being stopped but does admit I do get depressed at times (I don't deny it but a doctor who won't listen to me doesnt help).  She wants me back on the SSRI (even though she also admitted she knew nothing about that type of medication) so that at the very least I can taper off it properly.  She then tells me she want's me to look into if swallowing problems are with EDS but I made one point on that and she backed right off thankfully.  She is adamant that my thyoid is perfectly normal even after I made my case, my mom made her case and we went over all the issues I am having that don't fit in autonomic dysfunction or EDS but seem to fit very nicely into a set of symptoms of a disorder that is very prevalant in my family.  She just kept going back and back to me being depressed and needing something for that and how worried she is about me.  She told me that the thyroid issues that I am thinking about (low thyroid) will not cause swallowing issues because it is obvious I do not have a goiter.  For some reason she kept going on at how sweating isn't a sign of thyroid even though I told her that I never thought it was and I knew it was completley unrelated at all.    She did finally relent and ordered a repeat for my three thyroid levels and suggested I get a barium swallowing test done. 

When we came out of the appointment I was pissed off and felt ambushed.  She didn't seem to listen to me at all or provide any helpfull suggestions.  Okay so if she doesn't think it's the thyroid than what does she think it is?  What is the next step to find out why?  What is causing all the other issues?  She seems to really want me on a dose of anti-depressants and I flat out refuse.  I told her that the only reason I was taking the SSRI was for the sweating and the dose that I was at isn't even recognized as theraputic for depression (even though she says that it was working and me stopping it lead me to the serious depression I have now).   I just personally work very hard at overcoming depressing times to get through it without having to medicate myself.  I just don't really believe in being on an anit-depressent long term for something that actually has a cause (try having EDS and not going through bouts of depression) and not going to get better.  I have my own ways to 'pick me up' and get through it and I don't want drugs for it.  Thankfully my mom agrees with me on that part and also isn't comfortable about me taking a medication daily for depression.  Don't get me wrong they do have their time and place but they have never been meant to be taken for years at a time!

So the plan - Mom and I still believe that the thyroid is part of the newest puzzle.  I am going to go and get my bloodwork done and then see my family doctor.  I will see what he says and get his point of view on the issue.  If nothing shows in the bloodwork (which it probably won't as I don't test like a normal person) than I will take things in my own hands.  There is a nutrition store in town that sells a thyroid supplement that I will go in and try taking for a month or so and see what happens.  I am used to doctor's disagreeing with me, it is a common occurance (more realisticly happening than doctors actually agreeing with me) but at least other doctors give me a rational answer as to why they don't think that is the problem and / or offer suggestions and not just keep repeating 'your numbers are fine'.