bebe127

Interesting tidbit I just found while going over previous bloodwork. My Thyroglobulin was 46.2 ng/mL and listed as high on my results. The normal range is 2.0-35.0 ng/mL. Mine is elevated a bit more than 10 points and the dr. didn't point this out as to being an issue. Although I just looked it up online and HELLO...I have every symptom (I've underlined mine below) with the exception of the puffiness around eyes, dryness, irritation and bulging. What to do? Obviously, I'm going to talk this over with dr. next week. Do any of you have elevated thyroglobulin? Is mine considered high? As most of you know, I've questioned my dx. of POTS for a while and now I find this. Is is possible that I have hyperthyroidism and that is what is causing my issues, they sure seem like some of the same symptoms as POTS to me??? UGH...will this ever end??? Hyperthyroidism: too much thyroid hormone; sometimes called "overactive thyroid;" acceleration of body functions; symptoms include increased heart rate, anxiety, weight loss, difficulty sleeping, tremors in the hands, weakness, and sometimes diarrhea. There may be puffiness around the eyes, dryness, irritation, and, in some cases, bulging of the eyes. The affected person may experience light sensitivity and visual disturbances. Because the eyes may not move normally, the person may appear to be staring. (LabTestsOnline.org)

It is quite sad to think about when ticking off most of the boxes. FYI, I've used this list and the lists I've found online including the one found on Dinet.org to make a chart of my symptoms. I have five columns based on frequency: Always (Daily), Frequently (4-6x/week), Sometimes (1-3x/week), Rarely/Never, and Don't Know. It is my hope that I can take this to the dr. and show him more precisely what I'm experiencing without having them ask and me having to spend thirty minutes going over all my symptoms; plus, this doesn't leave anything out so I don't have to remember everything or worry about forgetting to mention something.

Thanks for the responses! My next line of defense (I hope) is to go in for my physical next week with my GP. He's going to order labs and it is my hope that I can convince him to order a variety of tests (not too many though, just the ones I'm concerned with now). I would like to firstly know what type of POTS I have. I am going to go over my TTT and discuss the whole "probably" part with him. While I had "remakable" results from my TTT, my BP increased, which from what I've read can happen with HyperPOTS. I do not faint, nor do I get lightheaded often, I don't have blood pooling, or a host of other symptoms common to POTS, could be the meds., though not sure. I do have tachycardia and mostly just feel yucky much of the time. I'd like to be tested for HyperPOTS in which case I'm assuming he'll have to check my NE levels. Also, I'd like to ask for an ANA test (Antinuclear Antibody) since I've read that this test can detect autoimmune disorders, but I realize there is a potential for a false-positive and of course like you said, Lel it can come back negative even though I might have something. I also want to be tested for MCAD, but don't know if this is asking too much. I think at this point, I just want to know if I have HyperPOTS or more specifically, what type of POTS I have, if in fact I have POTS (which if I do, my meds might need to be changed) and/or if I have any autoimmune issues that could be contributing to my state of health. I've been going through this for almost four years now and I've never had any of the above tests done. No dr. has even suggested that there are different types of POTS nor have they suggested finding out what type I have. Unfortunately, my daughter is beginning to exhibit some symtoms as well. She has congenital heart conditions already and her regular visit to her Cardio is in two weeks. I'm going to discuss it all with her. My fall back plan, if my GP can't help me is to go see a new EP that apparently knows about dysautonomia. I was referred by a friend who's teen daughter was diagnosed by him not too long ago. We might have to see him anyway for my daughter, we'll see. Thanks again Be well.

My treadmill stress test done 4 years ago indicated no abnormalities and the results were that my heart had "above average exercise capacity", I didn't even break a sweat. At the time I was an active, relatively normal 39 yow riding my bike 9 miles 5-6x/week. A week later I was in the hospital with tachycardia (even though I'd been experiencing tachy previously, but otherwise felt normal) and two months later was dx. with "what is probably POTS". Go figure?? Furthermore, on the subject of the article (which I read years ago) It is my belief that when they talk about "deconditioned" they don't simply mean couch potatoes, they mean someone who has been bedridden for a number of months or years due to illness.

So sorry for your experience! I think many of us have had similar issues with idiot dr.s, I know I've had my share. Try to not let one dr. (or more in many cases) discourage you from looking further into treatment. Some doctors have such a chip on their shoulder as well as a god-complex and if we don't fit into their little box or their medical textbooks well, then we're SOL. Try to keep hope, I am convinced there are good doctors out there willing to listen and help, we just have to be vigilant and patient; sometimes that is the really hard part. I truly hope you find a good doctor and get some relief sooner rather than later.

Dani, I'm sorry you are going through this. I'm with Joann on this one, I feel the same way about my children (16) and (15). I'd so looked forward to this age and being able to do all sorts of things with them and now I can't. In a few short words (which is a rarity for me ) ...in answer to your question, one day at a time. Do what you can when you can and try not to worry about the rest. Try to focus on all the things you can do, like at least we all know now that you have a clean baby!! Don't give up!! Here's to hoping your flare ends soon and you get some relief. Be well, Bebe

Robert, You have come to the right place. There are many including me that have gone down this road before and contiue to go down it for that matter. I've been posting on here a lot lately about the some of the same issues. I'm going on four years and still don't have a clear diagnosis. It's tiring just having this illness, but to then expend energy that we don't have on doctors that don't/won't help is enough to break anyone down. That dr. ought not to be practicing. I would definately look into reporting him to your insurance or something. Such a great idea about emailing dr.s, I'm going to try that myself again. I have in the past emailed one dr. that I was referred to and he promply emailed me and told me that he couldn't help, that's probably why the emailing stopped there. I have new found HOPE (by coming on here and posting--this forum has been such a great, compassionate, caring and encouraging group) and I'm getting back on the ride equipped with what I hope will bring me some answers. If not, I'll be irritated for a while, but I'll have to get back up and try that much harder. Only we know our bodies and only we know how we're feeling. And, great idea on having someone accompany you to the visits if that is possible for you. Two heads are always better than one. Keep up your search!! One more thing. If you have insurance, you might call them and ask them if they have a medical support group. My insurance does (it's called Medical Decision Support, I only recently found out about it myself) and if you have a diagnosis they will reasearch the dx. and send you a packet of information as well as doctors in your area that treat it. I wish my insurance had this years ago, but they do now and I'm going to use it for all it's worth. Also, make sure you have copies of EVERYTHING so that when you do get into a dr. they don't have to go through the trouble of getting other dr.s to fax your information. Trust me, the dr. will be grateful you did. I know this is so hard and I do hope you find a doctor that can help you. I've always thought that finding a dx was the hardest part, I know it's no concilation, but you now have clear diganosis to go on, that in and of itself is encouraging. This is a roller coaster ride from the beginning. Try not to give up! I hope a great doctor is right around the corner for you. Be well! Bebe

Thanks Hope!! I agree with you and Joann. I'm in the process of compiling a notebook with all my info that I will take into the dr. next week when I go in for a physical. If it is not ready by then, I'll just take in my list of symptoms and some articles and questions I have regarding HyperPOTS and MCAD. We'll see what happens. Here's to hoping I can get some assertiveness before next week I really do like my GP and he treats about 5 other patients with POTS, so I guess I really should be grateful. I don't like psychiatric drugs either, but to tell the truth, I think that Xanax is something that I truly couldn't live without. I've been drinking my Nutribullet smoothies the last two weeks and walking with my son a few times a week as well, and I tell you what, I'm feeling so much better! Don't know if it is that or I'm just having a "good week". I had a freakout this past weekend, but that has passed and today I feel really good. Go figure. It's like my body is bipolar!! One day, fine, next day FREAKOUT!! I just trying to go with the flow. Too bad my family has to deal with my craziness as well. Oh, well, I'll take good when I can get it. Hopefully will find some info out at next appt. Thanks again and be well, Bebe

I also have had GI issues until just recently. The only difference with me is that I started drinking a Nutribullet smoothie about 4-5 times a week in the am for about the last two weeks. They usually contain but aren't limited to...spinich, shredded carrots, apple, banana, blueberries (or other types) a scoop of yogurt and some coconut milk. I was just realizing this am that I haven't had diarrhea and/or loose stool (sorry for the tmi) for about a week or so. Can only figure that the smoothies have made the difference as this has been the only change. I've never tested for celiac, but have heard good things about gluten-free diets.

Angela, Thanks for your response. By the H1 and H2, do you mean Zantac and Zyrtec? I've often thought of just starting those on my own, but need to check with my dr. as to any drug interactions. Thanks again, Bebe

dpeeps and Margibee, Thanks for your responses and your questions. I'll try to make this short. You can feel free to read the really long version on my blog below. Not trying to give a plug, it's just a long story and it includes most of my dr. visits and symptoms and such. Here goes: I originally went to see a dr. for a raised hr. It would get up to 120 while just making the bed and I had some chest pain/discomfort and a weird feeling in my left arm. I also had some bp readings that were on the high side. I saw a cardiologist. She put me on Norvasc (10mg) and Niacin because she said I had high bp and high cholesterol. She scheduled me for a treadmill stress test. The results of the stress test were: Exercise capacity: "The patient exercised for 8 min. 6 sec. of a Bruce Protocol achieving a work level of 10.0 METS consistent with above average exercise capacity. Hemodynamic Response: "The patient's resting HR was 81 bpm and BP was 123/84 mmHg. By peak exercise, the HR rose to 171 bpm and the BP rose to 176/95 mmHg. No symptoms, No arrhythmias, 100% PMHR achieved. So...end result, I have a perfectly normal heart function (great news) and have above average exercise tolerance. I have to say that at the time all this was going on, I didn't have all the symptoms I have now and I was exercising regularly, riding my bike 9 miles a day. I had been taking the meds that she prescribed for about a week when I had my first episode while driving. Next morning same episode happened and I found myself in the ER where I stayed over night. Saw the dx. EP there and both he and the attending dr. said that I had neither high bp nor high cholesterol and to stop taking the meds that the cardiologist gave me. They both told me that a side effect of the meds was arrythmias. The EP asked me if I had ever fainted, I told him one time while I was a teenager (I was at this time 39). He scheduled me for an event monitor. The EP wrote in his notes that I was "experiencing palpitations associated with racing heartbeat, dizziness, lightheadedness, sycope (all true except the sycope, why he wrote that, I don't know). She feels jittery with tingling all over her arms and legs." My potassium was 3.2 (on the low end from what I've read) and everything else was unremarkable. After having the event monitor for 21 days, his first assessment was that I had SVT. He also put in the report that I had significant bradycardia. He wrote that my SVT has morphology which resembles a bunch of long medical terms. He also put the "her heart rhythm abnormalities and her symptoms might also be related to other conditions such as vasovagal syncope associated with bradycardia and tachycardia." Fast forward to the TTT. Yes, the TTT is the only test for determining POTS that I know of. Mind you, I was not on any medication at the time and it had been about 2 months since my initial episode. I'll give you the short of it: Results: Baseline BP 117/76 HR 60 Raised TT to 80 degrees After three minutes my vitals were. BP 123/98 HR 95 2nd time: After three min. BP 139/94 HR 147 and into the 150's he did a few things like pressing on my carotid and having me bear down to lower my HR, didn't work. 3rd time: After three min. BP stayed at the range of systolic of 140-145 and HR rising to 160 range. He injected me with adenosine to stop an arrhythmia (if I had one) made things worse. In his notes he put: "TTT results were probably consistent with POTS." He then told my husband and me after giving me some printouts from Dinet.org that I probably have POTS. He told me, "Drink more water, eat more salt, and go live a normal life." He told me in a later follow-up visit that "many people live normal lives with this, I don't know why you're experiencing all these symptoms."He told me the only medication for POTS was Florinef but that he wouldn't put me on that because my bp raised during the test and by putting me on that med it could cause hypertension. So there I was with a "probably" dx and relatively no explanation. He told me that POTS is rare and that not many dr.s treat it and he wasn't one nor did he know of any that did treat it. He referred me to a Neuro. I went and after a few preliminary, what I call "sobriety tests" in the exam room, told me that my problem was cardiologic not neurologic and referred me back to original EP. So that's the short of it, well, sort of. Maybe I'm just stuck on the whole "probably" thing. I still have many symptoms and the more I read, the more I question. Still no one has told me what type of POTS I have, if in fact I have it. Not even the dx. dr. told me there were types. I only learned that after doing research on my own. Don't get me wrong, I am doing better that I was four years ago and I have good days and bad, but I just can't stop this nagging feeling that something else might be wrong, or that there is an underlying condition that needs to be looked at. Thus, my quandry. Hope this answers some of your questions. Sorry it was so long. Be well, Bebe

Thanks mydoggielovesme and Westernmass, I haven't really been tested for anything else since getting sick. I am currently working on putting a notebook together to take to my dr. next week. When I first started seeing him, he just kinda concurred with the dx. EP and went with POTS. We've never discussed anything else like Lupus, Fibro, Mcad and the like. The only blood tests he has run are just the regular ones. He has never tested my NE levels which might or might not point me toward Hyper POTS. He's never even taken my bp lying, sitting, standing. One of the good things about this dr. is that he put me on a BB (although if I am hyper these might not be helping, from what I've read) and at least tried some things with me. Not like the dx dr. that just suggested I have POTS and that there was nothing I could do and told me to "go live a normal life". I haven't been back to him since. I guess I'm just so tired after waiting for hours in my GP's office and I'm so frazzled when I get in to see him that the only thing on my mind is that I just want to leave. He is a pretty good dr. though and he seems to listen. I am going to hopefully aquire some assertiveness soon so I can ask for different tests. Thanks again and be well

Thanks looneymom!! Hope your son is well and props to you for being such a great caregiver/advocate for him

Thanks for the encouragement Joann!! Hoping you feel better real soon. You are right, I'd hate to keep going feeling poorly when someone out there might be able to help me somehow. I guess it's just the good ol' fear of the unknown that's the killer. I'm in the process of a blog post on my notebooking, and your suggestion of listing symptoms reminded me that I actually made a table listing them all in sections based on frequency (one of the positive things I guess to having so much time in bed and energy to only type!) thanks for the suggestions Be well!!

Hope this finds everyone as symptom free as possible. I have a question or two or three. I just feel like I'm in such a quandry. As most of you know I was diagnosed with "what is probably POTS" almost four years ago. I've never found out for sure (although tested positive during TTT), nor have I found out what type of POTS I have, if in fact I do have it. For these last few years I've been on the search through this site and many others like it as well as through blogs and the like. I've researched Lupus, Fibro, Meneires, MCAD, POTS, HyperPOTS and many more that I can't even remember right now. In my research I often find that I have some of the symptoms (and I know that no one person has every symptom and all these syndromes present differently) and much of the time the symptoms that I do have don't seem to be the prominent ones for any one syndrome, if that makes any sense. For instance, with Lupus, I have many symptoms, but don't really have chronic pain. I mean I have fatigue and my body at times feels like I'm 80 instead of 43, but I usually chalk that up to getting older. I guess what I'm asking is do any of you feel this way in your quest for answers? What do you do? I am currently working on a notebook that houses all my information in the hopes that when I do get to a dr. even if it's just my GP, we can possibly go over it. In the past the only tests my GP has ordered are regular bloodwork and some sonograms unrelated to POTS. Do I go in and just say...could you test me for Lupus, Fibro, MCAD, HyperPOTS, etc.,etc., oh and by the way throw in a test for the "crazies" while your at it? I feel like I'm back at square one. Even though I am doing much better than I was four years ago, I don't know if that is due to the meds, just getting used to my "new normal" or a change in attitude toward my illness. Perhaps it's a combination. I just feel like there is more to the puzzle, but I don't know where to go or who to turn to. I also always have that thought in the back of my mind that I don't want to start this whole process over again just to hear, you're just anxious, depressed, all tests have come back normal, "go live a normal life" (yes those were the exact words of the dx. EP! Maybe I should just leave well enough alone and be thankful. Oh...I just don't know anymore. Sorry for the rambling. Thanks in advance for any thoughts on this. Be well, Bebe

Julieph85, I'm so sorry you are feeling this way. I too have anxiety over taking new meds. I was just talking about this the other day; my husband calls it self fulfilling prophecy (I like Murphy's Law, it just sounds better to me in fact, I think my middle name should be Murphy!). He always tries to keep the informational brochure away from me because he thinks that if I read about some whachadoo side effect, I will invariably get it. I was put on Norvasc a few years ago, for hypertension (before being dx. with POTS), I took it for a week and found myself in the ER. A few months later was dx. with POTS. I still don't know to this day if the Norvasc reduced my bp too much and that maybe is what started this whole rollercoaster for me. I've tried a few new meds over the years and had some bad luck with some and others no effect at all. I am now on a BB Metoprolol and Xanax. I have not had any problems with either and have been on them 2+ years now. I am not sure if the meds are what has helped me to get somewhat better or if it is just that I am used to this mess or if it is my attitude or even a combination. I am hopefully going to see a new EP soon and it scares me to death that he might prescribe something new and I'll have to get back on the rollercoaster. I so know how you feel and it really stinks. I can't tell you whether to take it or not take it, but I will tell you that much of the med thing is trial and error and sometimes we have to go through it to see what will work. It's a "benefits outweigh the risk" senario. In my experience, if I take a new med, I pretty much know right away if it has a negative effect and I can either stop it immediately or at least call the dr. and ask for suggestions. I also don't start a new med until the weekend when my husband is home just in case. I do hope you get to feeling better. In the words of Winnie the Pooh, "...you are braver than you believe, stronger than you seem, and smarter than you think." Be well, Bebe

P.S. I am currently sitting on my back porch. It is 78 degrees and my house stays at a constant 78 degrees and I feel like my feet are blocks of ice...

I have cold feet all the time, worse at night. I live in a tropical climate and usually my only footware is barefoot or flip-flops, so...go figure, cold feet??? I abhor wearing socks or anything that confines my toes, but alas, I have to don the fuzzy, pink socks at night most nights. Sometimes my left arm feels cold on the inside (I know, sounds strange) it only happens once in a while and when I asked a dr. a few years back, his response was, (after physically touching my arm) "It doesn't feel cold to me", at which time in my head I screamed "What part of inside do you not understand?!" The only activity that I can think of in relation to my feet is walking, so no, they don't warm up after walking. As far as the "what type of POTS do you have?" I, sadly, have no idea...

Interesting Arizona girl. I wish I had this explanation 4 years ago!! I was dx. with "what is probably POTS" via TTT (2009) by an EP after an ER visit (my first and only one). He told me that he doesn't treat POTS and didn't know of any dr. that he could refer me to. Left me with the following words of wisdom, "Eat more salt, drink more water, and go live a normal life." I began seeing a GP a few years ago that put me on a BB and Xanax. Before being put on meds my bp would raise to the 140's/100's and of course would freak me out which only sent my bp even higher. I have suspected for some time now that I might have hyper POTS, but don't know what to do about it. Before I got sick I was dx. by a cardiologist as having high blood pressure and my OBGYN said I had high bp once. My rates were in the high 130's/high 90's at the time. Before the BB I was placed on Norvasc. This was all before my ER visit. While at the ER the dx. EP told me, as well as the attending dr. that I, in fact didn't have high bp and instructed me to stop taking the Norvasc. At my TTT my blood pressure raised instead of lowering and my hr went from 60's-70's all the way up to 155+ within three minutes. To this day, no dr. has ever suggested what type of POTS I have nor suggested any tests be done to see what type I have. My NE levels have never been checked. I hope I'm making some sense, I feel like my description is all over the place Thank you so much for your post. I have printed it out and am going to take it in to my GP next week when I go in for my physical. Bebe

P.S. Did a poor man's TTT on her the other day and hr went from 70's to 114 after three minutes. Will definately bring this up to the dr. and have them check her bp and hr while lying down, sitting up and standing. This is something the dr.s to this day have not done for me Hopefully, we'll get some answers, or it's off to a new EP that I was referred to by a friend that is supposed to have knowledge in Dysautonomia. Be well!

Hey Joann, She had some "fluttering" and was feeling poorly yesterday morning. I had her drink some gatorade and relax. She felt a bit better as the day wore on. She was away most of the weekend, and much of the time forgets to take her meds/vitamins/iron with her and with me not on her tail about drinking plenty of water; that goes by the wayside as well, so I really think that she just overdoes things and then pays for it later. We've started trying to keep track of her vitals daily along with a bunch of other information (I made a table for her on Word, an idea I got from a blog http://lethargicsmiles.wordpress.com/2013/04/01/daily-log-to-help-find-patterns/ but I changed dd's up a bit to suit her). We see her cardiologist in a few weeks and hopefully will get to the bottom of this whole "feeling wonky" thing. Thanks for asking Hope you are well, Bebe

Thanks Looneymom, She doesn't have a problem taking the liquid. I even asked her yesterday if she felt funny or had any stomach issues and she told me no. The only difference is that she havs much more of an appetite now. Last night we had lovely homemade savory waffles with Chicken a la King and she ate more than her father!! So...it must be the iron supplement because nothing else has changed for her except that she is now taking a multi vitamin as well. Thanks again Be well, Bebe

I use Frost and Glow (I think that's what it's called anyway) and it sometimes seems like an all day affair. I am with dani on this...I think for me it's the amount of time standing with my hands raised that does me in. So, I have to do it in sessions. I walk around my house looking like a pin cushion for a while. No worries though, since I really have nowhere to go and no one to see (except when the gardener comes while I'm in the process !) Plus, I think that because I use a cap, it might help somewhat. I've never really have a problem. I have bits of grey, but they don't bother me, I truly believe that women should grow old gracefully!! I just do it because I like the look and so does the hubby!! Hope you find some alternatives!! Great suggestions so far Best of luck! Be well, Bebe

Sounds like you're experiencing bradycardia: "Bradycardia is a slower than normal heart rate. The heart usually beats between 60 and 100 times a minute in an adult at rest. If you have bradycardia (brad-e-KAHR-de-uh), your heart beats fewer than 60 times minute." ~Mayo Clinic Not really all too sure what you can do about it unfortunately. I do experience this from time to time and then my heart will seem to pound real hard a few times like my brain is saying, get pumping you lazy heart! Wish I could be of more help. I would mention it to your dr. and see what he/she has to say. Best wishes to you

Margiebee, Chin up girl, I know it can be hard. I say congrats on you for going to school full time and working as well, that in and of itself is encouraging I remember my college days (way, way back LOL!) when I went to school full time plus student teaching, worked two part time jobs, and was married... wasn't sick at the time and it just about wore me out!! I know it's hard, but try to look at and concentrate on all that you do accomplish. I'm with dpeeps, I don't much care what others think either. You know you and as you go along your journey with this dreaded illness, you will begin to know your limits. Stick to them!!! I also agree with Tobiano, you have to keep track of your spoons at all times. If there is something you really want to do, you might have to relinquish some other things in order to have the energy. The Spoon Theory really does put things into perspective. Hope things get better for you soon!! Try to stay positive (easier said than done, I know). Be well, Bebe