derekliz Posted November 16, 2011 Report Share Posted November 16, 2011 So I went to see a new dr today, an electrophysiologist in Atlanta who treats a few POTS patients and after he looked at my TTT report that I had done at Birmingham on 9/13/11, he feels that I do not have POTS!! I was on 12.5 Metoprolol for about 2 weeks when the TTT was done. Here is the link to my results that I posted here prior http://forums.dinet.org/index.php?/topic/18163-my-results-from-birmingham-autonomic-disorder-center/page__fromsearch__1He wants me to wean off the beta blocker, do a 30 day holter monitor then repeat the TTT if symptoms continue and if the holter monitor shows any irregularities. He is referring me to an endocrinologist to look into my thyroid nodules further as this may be causing the tachycardia.So now I am back to square 1 just as I am starting to feel better... the fatigue is the same but my HR has improved significantly.I have cried my eyes out once again not knowing how I should feel. I am glad that he wants to look into it further but hate the possibility that the elevated HR will come back.Any thoughts?Liz Quote Link to comment Share on other sites More sharing options...
lgtaylor100 Posted November 16, 2011 Report Share Posted November 16, 2011 I also have thyroid nodules. They are small. The largest one is 9mm. No one has ever said that they could cause tachycardia. I find it really interesting that the doctor said that to you. I have also gone to see an endocrinologist and she said just to repeat the ultrasound in a year.Does anyone else have thyroid nodules or any information suggestive that there may be a link between them and tachycardia.Lynne Quote Link to comment Share on other sites More sharing options...
firewatcher Posted November 16, 2011 Report Share Posted November 16, 2011 (edited) Liz,Which doc seemed more knowledgeable and competent with POTS in general. I'd opt for the Birmingham group, since they've seen a LOT more POTS patients. I do agree that the thyroid thing needs to be looked at though. I wish it weren't this way, but we have to trust our gut instinct with doctors. They will try to help in as many ways as they can, but end up screwing us up in the process due to all the unknowns. I'm still holding out hope that there is one decent doc in Georgia that has the interest to treat POTS patients, but I'm not holding my breath.Hang in there.JenniferBTW, I have thyroid issues too (enlarged, firm and rubbery...like a toy duck...stuck on my neck! ) Edited November 16, 2011 by firewatcher Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted November 16, 2011 Report Share Posted November 16, 2011 Seems counterproductive to come off the beta blockers if they're helping you feel better, but I can understand wanting a definitive diagnosis. Your original results don't look like POTS, but I don't understand how the results can be reliable if you were on a beta blocker at the time? If you're having the 30 point jump at home from standing, I would think it probably is POTS. Is the tachycardia brought on by standing up? It's a tough call. If you aren't feeling confident in the original diagnosis, sounds like you'd have to start from scratch - no meds, new testing. Or forget pursuing the diagnosis and just stick with what's working. I agree with Jennifer - go with the Dr. who seemed the most knowledgable. You can kinda tell when they know what they're talking about or not. Quote Link to comment Share on other sites More sharing options...
derekliz Posted November 17, 2011 Author Report Share Posted November 17, 2011 I forgot to add that I have an appointment in Auburn Alabama December 20th with a POTS specialist and they wanted me off the Beta Blocker 3 days prior to all the testing that they are going to do so they can have more accurate results. I wish that I would have been off the Beta Blocker when the 1st TTT was done. The Dr. In Auburn looks for triggers/chemical causes of POTS/Dysautonomia. The Dr. here in Atlanta is basically trying to get a better picture of what is happening when I am not on the BB. I only had a 24hr. holter monitor by my previous cardiologist....no other testing done prior to the BB except for a CT angiogram which was normalI felt that the MD today was very knowledgeable and did not want me on any uncessary meds unless they are truly needed. I feel like the Dr in Birmingham has a cut & dry protocol of meds that she places patients on but was specifically told that they will not look for any triggers. I am inclined to go with the Dr. I saw today and then allow the Dr. In Auburn to do all the testing and go from there.....I think???? Ugh....so frustrating and confusing Naomi, Yes the tachycardia is brought on by standing up.....it was mainly in the morning.....afternoons were fineLynne....this is off the Mayo Clinic website about Thyroid Nodules http://www.mayoclini...ECTION=symptomsJennifer, this MD seems knowledgeable but then again, I won't know for sure until the results are in from the 30 holter monitor and how he responds.....just don't know Quote Link to comment Share on other sites More sharing options...
Maiysa Posted November 17, 2011 Report Share Posted November 17, 2011 Liz, I'm sorry you are having to start from scratch. What a mess this can be. Hang in there. i had a thyroidectomy in 2009. I had nodules as well. You have to get an ultra sound. I think about 50% or some number close to that, whom are over 30, have nodules and in most cases it's benign. Unfortunately for me it wasn't the case. My regular doc didn't have a clue how to handle it...so see an endocronologist. I could not stand up straight for two years before they took mine out. It messed up my heart so terribly bad and blood pressure-I just found some old records from a few years ago where my blood pressure was 119/67 lying down and 156/88 just to stand up. I guess I had hypertensive something...anyhow, I still have a lot of problems, but getting that fixed helped a lot!!! And my thyroid was so toxic that it was poisoning my system. And never once did I have an abnormal TSH blood test. The doctors were a little shocked. So sad but true, at the time I was feeling like I was on my death bed and this one doc kept telling me everything was fine and would cut me off when I was telling him how sick I was and would say, YOU"RE FINE, but I knew better, so I went through all of my old labs and results from CT scans to blood tests for the past 2 years. And the nodules actually showed up a year earlier but they forgot to put that important piece of information in the summary notes at the end of the CT scan results. So I actually had to figure it out myself. All the doc had to do was to read the notes thoroughly to find thyroid nodules issue. When I brought it to the doctors attention, who said I was just fine for 12 months, freaked out and sent me to an endo immediately. I've never been back to that man! And what are the chances-after surgery I was sitting in my room so sick and bandaged up and that same doctor came into my room thinking I was some other patient-he looked like he saw a ghost and said, Oh I'm sorry, Maiysa, wrong room...I think that was God giving him a little lesson in.....listen to your patients when they tell you they are sick. Please let me know if you have any questions. Or just email. Have a nice evening. Quote Link to comment Share on other sites More sharing options...
derekliz Posted November 17, 2011 Author Report Share Posted November 17, 2011 Thanks Maiysa.....just sent you a PM......how did they finally figure out something was wrong with your thryoid? I have been suspecting this has been a problem for me for several years. I have had bouts of HBP.....on and off meds but all Dr's come back saying that my levels are "Normal". What were the sizes of your nodules?Thanks for the kind words.....I have been struggling all afternoon!liz Quote Link to comment Share on other sites More sharing options...
sue1234 Posted November 17, 2011 Report Share Posted November 17, 2011 I had my thyroid out due to Hashimotos. Mine was like Firewatcher, rubbery and constricting. I had a handful of small nodules, but I don't think they were active. My thyroid levels were pretty normal, but I never could take any thyroid meds to bring my TSH closer to the lower end of normal. After I had it out, I can tolerate my meds up to a certain point. If I try and get to the most "optimum" levels, I feel very hyper(even though the numbers are still normal). It's like my body can't handle anything that hypes it up to a normal level.If you have nodules, and your TSH is kind of low, look and see if your FT3 is elevated. IF I remember correctly, a highish FT3 can point to autonomous toxic nodules, and they'll want to either radiate them or remove the thyroid. But, first they would do an uptake scan to see if they are "hot".Please keep us posted on the Auburn appt. I'm curious what all this doctor will dig for! Quote Link to comment Share on other sites More sharing options...
derekliz Posted November 17, 2011 Author Report Share Posted November 17, 2011 Sue, I will definately post an update after my visit to Auburn. I actually just emailed the nurse to see if I can get an appt sooner that Dec. 20th (that seems sooooooooo far away)!!!These are my lab levels.....what do you think?All thyroid Antibodies levels negative (would have to pull up those #'s)7/21/11 TSH .82 (.45-4.5) Free T4 1.2 (0.8-1.0)7/1/11 TSH .536 (.45-4.5) Free t4 1.03 (.82-1.77) T4 Direct 5.9 (4.5-12.0) Free thyroxine index 2.1 (1.2-4.9) T3 Uptake 35% (24-39)2/2/11 TSH .594 (.45-4.5) Free T4 1.31 (.82-1.77) Free T3 3.7 (2.0-4.4)8/5/10 TSH .45 Free T4 1.1 (.8-1.8) Free t3 292 (230-420)6/23/10 TSH .50 (.40-4.5)11/3/09 TSH .76 (.40-4.5)7/23/09 TSH .47 (.40-4.5)7/15/08 TSH .70 (.40-4.5)1/3/08 TSH with reflex to T4 0.8 (.40-4.5)10/4/07 Tsh .64 (.40-4.5)1/3/07 Tsh .78 (.40-4.5 Quote Link to comment Share on other sites More sharing options...
sue1234 Posted November 17, 2011 Report Share Posted November 17, 2011 Well, your TSH sure likes to hang on the lowish-normal end, that's for sure! But, the other numbers look okay. I'm assuming when they tested antibodies, they tested the TSI? That would be the one for hyperthyroid, even though Hashi can make you swing hypo and hyper. I have no clue. Quote Link to comment Share on other sites More sharing options...
derekliz Posted November 18, 2011 Author Report Share Posted November 18, 2011 I had spoke with the nurse in Auburn, who I have not seen yet and she wanted me to hold off on the event monitor and on weaning of the Metoprolol till my 3 days prior to my testing on Dec 20.....i was even more confused so , I met with my PCP this morning to talk to her and see if she can help me decide what to do. She felt, and I agree, that I am going to slowly wean off my low dosage of the BB and do the 30 day event monitor which is being delivered to me on Tuesday. She wants me to hold off starting the Nuvigil that my neurologist prescribed until after all my tests results are in as that med can cause palps and tachycardia. (I have chronic fatigue according the results of my EBV DNA QNT test). She said that if the palps and tachycardia become so unbearable then to call her or the EP and we would take it from there. I will continue to take the zoloft and klonopin and see the endocrinologist on Nov 28.Whew......Now I need to take a nap....so stressful. Thanks to all for the advice and kind words Quote Link to comment Share on other sites More sharing options...
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