boymommy3

Issie, I have been hyperthyroid for years!!!! (on and off) but right now it's just my TSH that is low. It was virtually 0 in December. It's a little higher now but not much, BUT my FT3 and FT4 are normal. Like really normal. Not high or low. I also only have 1/2 a thyroid as I had a hyper functioning nodule about 8 or so years ago and had surgery to remove that half. My Endo is currently looking into the possibility that it's pituitary instead of thyroid. However, when he palpitated what thyroid I have left it was very tender and sore, so that leads me to believe that it is generating from my thyroid.

Issie, Can MCAS cause a lot of body temperature issues? I get burning sensations on my skin as well. But I also have issues with sweating. It seems to relate to the middle of the night and first part of the day and then gets better in the afternoon and evening. I will feel hot and get sweaty with minimal exertion but I feel like it's cold sweats and sometimes my skin will even feel cold but I will be burning up. But, then even when I am hot if air touches my skin I get chill bumps all over my arms. Then sometimes I feel feel heat just radiate off my body and my skin will feel hot and I won't be sweating at all. Then other times I freeze. Especially if I am still for very long, I start to get cold and have to add layers. Does that sound familiar with MCAS? Can you tell me the best website to look up information about it? I have hyperthyroid issues also so I just thought that the temp issues were coming from that. Thanks so much!!!!

http://www.stopthethyroidmadness.com/ I know every kind of medicine isn't' for every patient but I just found this site and thought others on here with Hypo issues may be very interested. You have GOT to read her "about me" or "my story" I can't remember which wording she used. It's at the bottom left side of the page. I would love to hear others thoughts on this. I don't deal with Hypo, I have hyper, but I found this site very interesting.

I am so sorry that your doc said that to you! Sometimes they can be so heartless. I think they forget they are talking to REAL people! Also, I do not have MCAS but I am allergic to Morphine and have GI issues as well. I know it's easy for us to say don't worry about it after someone has put that thought into your head, believe me I have been there, however, I will say it again. Try very hard not to worry about it and just wait until you get your labs back. It just doesn't sound like your doc is using good common sense here. Just a story of something stupid a doc said to us once.... Our oldest son has a CHD called HLHS (Hypoplastic Left Heart Syndrome) and has had multiple open heart surgeries and catheterizations. Once after his second open heart, he wasn't doing well and no one could figure out why. We were very worried about him, to say the least. This second surgery was #2 in a series of 3 that he would need over a period of about 4 years. So after discussing our concerns with his surgeon and asking basically what they were going to do, he just looked at us and rudely said, "Well, we certainly can't to the 3 surgery yet!" Honestly, I was ready to smack him and I was so sad at the same time. We clearly knew that something was wrong and they were missing it (but were in no way implying we thought they should do his next stage at that point), and I think he was offended by the fact the we were questioning him. It was such a rude and heartless thing for him to say and especially in the manner that he said it, when there were parents who were standing in front of him afraid they were losing their 6 month old son! I think doctors are taken aback when they run across people who know a little bit about what they are talking about and don't just blindly follow the doc where he wants you to. And, btw, we did turn out to be right and got another doc that we had become close with in PICU to look at him and he figured it out all was good. However, it could have been a completely different story if we hadn't gotten the help when we did. Hang in there!

So I have been on Metoprolol XL 50 mg. for a while now. In the beginning I was taking 25 in the am and 25 in pm, but my cardiologist said to try taking the together at night because that does seem to be when I have my worst issues. Once I started taking it at night things settled down a ton with my hr...until this week. Every night this week I am waking up to my heart racing. I haven't missed any doses and I take it around the same time every night. Also when this is happening I am not even up. I just roll over and it wakes me up. I haven't checked to see exactly what it is but it's definitely well above 100. I also feel like my hr is higher the first part of the day no matter what I am doing and as the day goes on it seems to just lower on it's own....until the middle of the night. I am also dealing with being hot and sweaty in the night and morning times but then just as with my hr, I seem to cool down as the day progresses. Does anyone else experience this? Any ideas why this is happening? I do see my cardiologist next week. I just took of my King of Hearts yesterday morning after wearing for 3 weeks.

My TSH is low (in December it was essentially 0) but my FT3 and FT4 are really normal. I have gotten these kinds of lab results before. The last time they checked my TSI and did an Uptake, I didn't test positive for Graves. He is rechecking EVERYTHING right now. I thought I was going to need a blood transfusion after they got through drawing blood today! My case is very confusing to me and any doctor I have ever seen. Are you on synthetic thyroid? Are they checking your FT3 as well. If not they totally should. Also, I am sure you know, but your TSH comes from your pituitary. In your case, since you have no thyroid at all and you aren't symptomatic then it seems to me that you could have a pituitary issue. Don't take that to the bank or anything, I am not a medical professional, but it's worth asking your Endo about.

Well....I went to see my Endo today and it was encouraging and disappointing at the same time. The disappointing part is that he isn't very familiar with POTS at all. I was soooo hoping he would be and that he could really help me sort through my thyroid/pituitary and POTS/dysautonomia issues. So that is a major bummer! The good part is that he seems like a really do doc and he is super thorough. I believe he is really trying to get to the bottom of some of my issues. I have suffered from Hyperthyroidism for 15 years and have kind of been a mystery to my docs. After several years of dealing with it early on they finally discovered a hyper functioning nodule on my left lobe. I had surgery to remove it and my ENT said that would do the trick. He also said that it was unlikely that half a thyroid could sustain someone and it would eventually just go kaput and I'd need replacement thyroid hormone. Well....that has NEVER happened! I have continued to be hyper functioning much of the time and it has been a roller coaster ever since. This Endo I am seeing now is the first one who has really tried to figure me out. He is currently checking me for some very rare things since all the normal stuff keeps coming back fine and he is also trying to get to the bottom of wether it's my thyroid that is acting up or if it's actually my pituitary. Apparently this can be difficult. My POTS symptoms came on two years ago after having very low potassium levels and what seemed to be thyroid issues. Now I am beginning to suspect that these dysautonomic issues may be stemming from what ever else wrong and that if we can discover that and cure it, then my POTS may go away! That is at least my prayer and hope!!!!! I will be off to the cardiologist next week to discuss the results of my King of Hearts that I just returned today and see what he has to say. I am beginning to think I have seen every "ologist" there is! I go to the doctor more than my parents!

This is the best thing ever! Thanks for helping us laugh at something that isn't funny at all.

I have been on Metoprolol XL since December and I think I am doing ok with it. I started out at 25mg but got bumped up to 50. I did definitely have some crazy dreams at first but that did go away. They weren't really nightmares but they were really weird and vivid and had that continued I would have considered changing. Some of those dreams I really wish I could forget! However, I will say this.....I really have this feeling of not being myself. It's very hard to explain. I can't figure out if it's just my illness, this Metoprolol, or the Celexa I take (20mg). I wouldn't call it depression or sadness, just not myself. I do kind of feel like I have lost my joy even though I wouldn't characterize it as depression. Prior to all of this I was a pretty hyper/boisterous/happy-go-lucky kind of gal. I have never had problems with depression and have always found it easy to be happy even in difficult circumstances. So, now....I just feel like my happy-go-lucky kind of went somewhere. Also, for the past two or three nights I have woken up in the middle of the night to my heart racing so now I am starting to wonder if the Metoprolol is not working as well. I have been more symptomatic all the way around this week though. I tend to think it has more to do with the Celexa (which I have taken before and have done wonderful on) than the Metoprolol, but I am not sure. I do know that BB can cause depression. Maybe it's a combination of the two....who knows, but for what it's worth that's my experience with this particular BB. I do however, HATE this feeling of not being myself, but at this point I am not willing to rock the boat and try something else. I want to give this stuff a little longer.

I am so excited to go see my Endo tomorrow! When I first started seeing this one, we didn't discuss POTS because a cardiologist said that I didn't have it. I have been so impressed with this new Endo with my thyroid issues so I am very hopeful for a good appointment with him tomorrow. I sure hope I am not disappointed! I also finish with the King of Hearts tomorrow and I go back to the cardiologist next week. Also, on another note, does anyone know why we can't post of these forums form a Kindle? I am more tech stupid than savvy!

Well, I had my wisdom teeth removed prior to POTS so I can't really speak to that part of it. I agree with Kellysavedbygrace.....you need to have x-rays to see whats up with them. If they are impacted they really do need to come out somehow. My top two teeth had come through but the bottom two were completely sideways in my gums and had never come through. They were pushing on my other teeth and beginning to decay under the my gums (crazy!), so I they had to cut those out. I also had another tooth pulled at that time. The procedure itself went fine, but the pain afterwards was more than I expected and lasted longer than I expected. I was a good 7-10 days before I really felt like I was going to be able to eat again. I also had a decent amount of swelling. So, my experience wasn't horrible and I don't feel I have had lasting issues from it, but it was't a walk in the park either. Again though, you just need to confirm what's going on with them. You could be in a situation that it's not a big deal if you can deal with the pain, but if it's something more it could end up causing you even more issues in the future. BTW, I was 31/32 when I had my removed. Ever since then I have told my husband that at the first sign of those things in my boys mouths I am going to have them removed immediately before they get so big! Mine were HUGE!

It's interesting that you bring this up. My SIL who is a nurse has said for years that she thought I might have PTSD from a very traumatic set of events my husband and I went through early in our marriage. He seems fine but my body seems to have somewhat fallen apart in the time after our event. It's not something I have ever been dx with though. As for my POTS symptoms, if I had it before two years ago, it was mild, but I had a full on set of symptoms then. Our trauma happened almost 15 years ago, but is was and is something we have have to deal with still. To further complicate things for me, I have had hyperthyroid issues for years so it becomes very difficult to pull apart symptoms.

I am one that believes there can be a connection between vaccines and Autism, along with many other things. The chemicals that are present in many of the vaccines our children are given today have no business in our bodies. I have read countless stories about families who had perfectly healthy children and like a light switch, after a vaccine became autistic. I actually have a book on this just because it interested me. None of my kids are autistic and all are utd on their vaccines. My third son, however, did get very sick after a set of shots when he was a baby. It scared me so bad! After that I never allowed our docs office to give him more than one at a time. When my middle son was getting his 6th grade shots I did allow them to give them all at once just because he was bigger. I also have a cousin who is severely mentally handicapped due to an adverse reaction to a vaccine. No one else in my family has POTS or anything except me, however, we do believe my middle son has some signs of POTS. We are watching him very closely. I have no idea what the right answer is, and it's always been something that has bothered me. I just pray for God to protect them in every matter.

I am starting to think I am not suppose to write this post! I have tried twice and something keeps happening to my computer and I keep having to start over! Anyway, I am much like AussiOI. Two years ago in January was my first onset, I believe. I hadn't been feeling well for months. I have had thyroid problems for years so we always blamed everything on that. That time, however, I kept telling my husband that it wasn't just thyroid. I had had thyroid problems long enough to know what my symptoms were for that. I ended up in the ER with my heart racing and my entire body stiffening up. They discovered I had very low potassium and admitted me for a few days while they got my potassium levels back to normal. After they sent me home, I wasn't getting better though. That was when my GP first told me she thought I had POTS. I went to a cardiologist who wouldn't even entertain the idea. He had a really great explanation about how it was still my potassium even though my levels were normal now. So...I let it go. Not even thinking about POTS anymore. I had never heard of it anyway so it just didn't stick in my mind. We did also discover that I had very low Vit. D. I also began to supplement for that and after about 6 weeks I felt completely better. It was like a light switch really. One day, everything was gone and I had never felt better! Last winter I had some mild issues. Fast forward to this year.....I got the flu in December and BAM....one night it ALL came back. It was terrible!!!! This time however, Potassium was completely normal and Vit. D normal but on the low end. Again, my GP said POTS and this time I began to listen and research what she was talking about. It made complete sense! I had SOOOOO many symptoms of this and every other test they have run has been fine. She started me on BB and that quickly worked to settle my hr but so many other symptoms have been unbearable. So this time around it's been since the middle of December and I am just now having days that I feel functional. I still haven't been formally dx's but I am planning to schedule a TTT after I see my endo. Incidentally, every time this happens to me, it's in the winter. Other than that I don't know. The first time I have no idea what brought it on. I don't know if the low potassium could have done that or what. This time it seems to be the flu that was the trigger and it's been terrible.

This is so interesting to me! I have actually been planning to post about this because I have a hard time understanding it. I have been drinking Gatorade daily since December (when all my POTS came back with a vengeance) per my GP's recommendation, and eating saltier snacks (pretzels, crackers, goldfish). All the while my blood serum sodium is normal (high normal actually) and my urine sodium was normal as well (actually low normal). I just don't understand! The thing that is puzzeling to me is that I honestly do think I can tell a difference when I have the Gatorade and salty foods. WHY, if my sodium levels are normal? I also don't have low bp right now. Two years ago when all this first came on I did have some low bp's but not to the point of fainting. The cardiologist then told me to eat as much salt as I wanted. I would even say that many times this go around my bp is a high normal not a low one. I have always liked salt and salty foods and salted things, but not ridiculously. Probably more than I should though, and here I am doing it even more! I am daily concerned if this is good for me. Like I said though, I really do feel a difference with it, I just don't understand why. I do little test runs often and see how many days I can go without a Gatorade. It isn't very many before I start to feel worse and then drink Gatorade and feel some better. I am currently addicted to extra-cheddar goldfish becuause they taste much saltier to me. I haven't actually checked the difference in sodium content. Any thoughts on my situation? I did recently read an article that there are some studies coming out that are stating that salt isn't actually the cuprit for high bp. I can't remember where I read it though. I will try to find it and post it on here. It was very interesting....but like others have said.....you really can find a study to support your thinking on just about anything these days. Anyway, thanks for this thread! This place is such a life line for me. I am daily impressed with the medical knowledge that is floating around here.

I can totally relate to your issue here. I haven't been formally dx'd but my GP is convinced of it and the neuro also told me he believes my symptoms fit, I read on here and feel like I could have written half the posts I see, have family (a SIL whose an RN) and friends who have read up on it and believe that's what it is, BUT.....I keep having this nagging feeling like "what if it's something else?" I have had and MRI of my brain, an echo (2 years ago), multiple EKG's (all of which have been normal except one when I had low potassium), worn a halter monitor for 48 hrs, currently half way through an event monitor (wearing it for 3 weeks), and a treadmill stress test, and multiple blood tests.....ALL of which have been completely normal except for tachy, but it's been a normal sinus rhythm tachy! The only blood test I have had come back abnormal is slightly low TSH and low normal Vit. D. Two years ago I have very low VIt. D but not this time around. I just keep thinking...seriously....how do I "look" so healthy and feel so bad! I don't have the BP issues that many of you have but still experience the near fainting spells and lots of weakness. Especially in my legs. I am currently on 20 mg of Celexa, 50 mg of Metoprolol, Ativan .5 mg prn, and Gatorade. I KNOW that the BB keeps my hr down significantly, however, I do have times that I still experience tachy, but it's becoming much less frequent the longer I am on the BB. I also feel that the Celexa is helping but I am still not myself. I don't have much energy at all and I can't stay up late at all right now. I pray you can get some answers and most of all I pray that you begin to feel better. It absolutely stinks being so sick and not knowing exactly why.

Are you nursing? I was 10x more hungry when nursing my babies and was very thin.

Wow! I had no idea!

I don't know what it is, but I experience the same thing! Not so much the ice feeling, but the burning sensations are intense sometimes. I do say, though, that it sometimes feels like I have icy/hot on my skin so that may be similar to your icy feelings. My guess is it's just another dysfuntion of the CNS. I get these on the same places you mention as well. Don't have any answers for it, but just know you're not alone in that symptom. Sorry you have to deal with it. It's no fun!

I take 50 mg. of the XL daily and I think I do fine on it as well. I absolutely share your phobia of pills! I hate taking anything! I am still having tachy sometimes and my heart pounds as well but it's not as bad or as often.

I have also had a postive d-dimer two years ago when my doc first began to suspect POTS. Everything was clear for me just like badhbt, though. I was told that those test are very sensitive and come back positive often when there isn't anything there. However, because of the seriousness of the issue, they are obligated to follow through. So glad you are ok!

could this be a vasculitis? I don't know much about it, but had a friend who had it and she would get crazy bruises. I can't remember her other symptoms at the time either as it was several years ago. Maybe just look in to it.

So I had my appointment with the Neurologist today and it was great! I didn't really find out anything new, but I was just worried that he'd hurry me out and tell me to be on my way. He was so nice and personable and spent a good long while with me. He seemed fairly familiar with POTS so that was nice. He certainly isn't an expert but seemed to know quite a bit. He reiterated to me that my MRI was clear, just as my GP had told me when she got the results. After doing his neuro exam on me in the office he also said that he felt that he could emphatically say that I have no neurological disease that is causing my symptoms, and that they do all seem to be in line with POTS. Some of you may remember from some of my earlier posts that I haven't had TTT done yet because I have been to afraid to go off my BB, so I am not officially dx. He is going to do an EEG on me is a couple of weeks because of the shaking/convulsing thing that so many of us experience, as that did seem to stump him a bit, but he said that he didn't think the EEG would show anything. He said he'd like to do it in the name of thoroughness, which to be honest, I appreciated. He didn't just blow me off and he didn't discount any of my symptoms, but he was also very confident that neurologically I was spot on despite the symptoms, which led him to agree even more with my having POTS. He also said that he could not believe that my Thyroid has nothing to do with any of this. I have dealt with Hyperthyroidism for many years (that is a long story). He want's me to get my endo soon and see what he comes up with. He didn't think it was all of my problem but he was convinced it's playing a part, which I also agree with. In other news....I also had a treadmill stress test done today. I haven't gotten my official report but the FNP that was present said that it all looked good to her other than my high hr on my bb. My cardio had specified for me to do the test on my meds since I was having the exercise issues on the meds anyway. Apparently they normally have you stop them for the test. Their goal was to get me to 180 and keep on there for 10:30. I did get to 180 but only made it 9 something. I started feeling faint so they stopped it. She, too seem familiar with POTS (not as much at the neuro) and said that to her my treadmill indicated that as well. In that I had no other issues going on except the tachy. Of course she did also say, "You could just have anxiety, you would not believe how many women have that." I was thinking or brother....here we go. That is my fear from the cardio because when I told him last week that my GP thought that's what I have, he didn't even acknowledge that I said it. He also mentioned to me that he wondered if I was having anxiety that something was wrong with my heart. I have this King of Hearts monitor on for 3 weeks so we'll see. So, that's my day in a nutshell. No big answers but also some reassurance that my brain is ok! And I really did like the neuro guy so, to me it was good.

YES! No as severe as yours, but I definitely go through periods of not being able to barely eat anything because I feel nauseous, and after a few bites of food I will literally feel like I am going to gag. It's not always nausea though, sometimes, I just say that I feel sick if I try to eat. During those times about all I can handle is yogurt, bananas, or baked potatoes. I have just recently lost 10 lbs. because of this, but the last two or three days I have felt it subsiding some. I ate the most at supper tonight that I have eaten in weeks! Which really wasn't that much.

Do these Gi issues come with EDS or MCAS? I have a friend who I really think has EDS and she has major go issues also.