Curly03's Profile
All Journal Entries
Journals
Aug 17, 2015 - 8 comments
Tags:
Tags:
Im not sure where to write this but I just need to vent. This is hard for me to sit here and type this because of how sick I have been feeling lately but maybe this will help or maybe someone will see it and can relate. In a nutshell I have been sick for years with no diagnosis. I had my gallbladder removed in 2011 I thought it would solve all my problems but it didnt. It did help to a point but I still have a lot of symptoms not just my stomach. I have been to numerous doctors that tend to do the same tests once that usually comes back ok besides a few vitamin issues they assume im fine when I definitely dont feel fine. After a lot of research Im pretty sure I know what I have Postural Othostatic Tachycardia Syndrome (POTS). Most doctors are not informed about it and misdiagnose people who have it with stress or anxiety. I have yet to be officially diagnosed but even then im not sure what exactly they would do about it. This past week and a half my symptoms have gotten a lot worse. I get severely dizzy, feel off balance when I walk, light headed, head pressure, weakness, shaky, nausea, burping, some dry heaving in the mornings which i think is mainly from my stomach acid. I went to the doctor she just did some lab work said i had fluid in my ears so to take allergy meds and potassium pills since im slightly low. The allergy meds seem to help to a point but through out the day i still dont feel good. Especially if I go to long without eating I get really sick Im assuming my blood sugar gets low even though Im not a diabetic. Its pretty scary how sick I can suddenly feel and how I mainly just have to stay in bed to get any relief. I miss being normal I'm starting to wonder if Im ever going to get better. If anything I would even be ok with my usual normal so at least then I can have a few hours of feeling better until I have to eat. Feeling sick causes anxiety or to feel irritable. I'm not sure what else to do but this dizziness, off balance, and all my stomach issues with the anxiety all need to go. Hopefully I will find some relief soon and get to feeling better and possibly get a diagnosis.
I'm so sorry to hear how sick you are feeling. This sounds like more than POTS to me which is easily diagnosed. The key to the diagnosis is documenting that the heart rate increases abnormally in the upright posture. It should raise by 30 beats per minute when you stand. However POTS is often accompanied by - or overlaps with other dysautonomia syndromes, But if you've done your research, as it sounds like you have - you know that.
Don't give you dear. Keep searching for a physician that can diagnosis you. It took me years to find a diagnosis and I do understand that frustration. There has to be an answer for you.
I hope you'll soon have some answers. My heart goes out to you.
~Tuck
Don't give you dear. Keep searching for a physician that can diagnosis you. It took me years to find a diagnosis and I do understand that frustration. There has to be an answer for you.
I hope you'll soon have some answers. My heart goes out to you.
~Tuck
I'm so sorry to hear how sick you are feeling. This sounds like more than POTS to me which is easily diagnosed. The key to the diagnosis is documenting that the heart rate increases abnormally in the upright posture. It should raise by 30 beats per minute when you stand. However POTS is often accompanied by - or overlaps with other dysautonomia syndromes, But if you've done your research, as it sounds like you have - you know that.
Don't give you dear. Keep searching for a physician that can diagnosis you. It took me years to find a diagnosis and I do understand that frustration. There has to be an answer for you.
I hope you'll soon have some answers. My heart goes out to you.
~Tuck
Don't give you dear. Keep searching for a physician that can diagnosis you. It took me years to find a diagnosis and I do understand that frustration. There has to be an answer for you.
I hope you'll soon have some answers. My heart goes out to you.
~Tuck
Thanks for your reply. I have been documenting my vitals and heart rate when I lay down to standing. I have had a lot of things that can cause it as well in the past such as pregnancy, mono, tramatic event, and surgery plus Im pretty sure my grandpa most likely had POTS but he never got a diagnosis. He went to several doctors some even out of state they just said it was his gallbladder or anxiety he still had the same issues I do after his gallbladder was removed. I think I do have POTS but since I have gotten worse I know thats not my only problem. I got the rest of my lab results today. Besides my potassium being low my vitamin D3 is extremely low so that explains what causes me to feel so weak and feeling slightly depressed. I still have fluids in my ears so thats why I feel so off balance and dizzy.She gave me a nose spray for it. Other then that the doctor told me she didnt know what was wrong with me. I was almost in tears because I have been to so many doctors with no diagnosis feeling as sick as I have and not being able to eat right or sleep got to me. So I told her I was pretty positive I have POTS and explained to her what it was. She took my vitals and measured my heart rate and said it defiantly was fluctuating so she was going to talk to a cardiologist tomorrow to try to get him to do a tilt table test. Im going to be nervous and dreading it but I have been needing to get it done for years. It would be nice to finally get a diagnosis on why I never feel right. Although with the way I have been feeling I do miss my crappy normal compared to what I have been feeling like. Hopefully once I get my vitamins up and the fluid out of my ears I can start to feeling better and get an official diagnosis.
I am so glad you'll be consulting a cardiologist. Often not knowing is worse than having a diagnosis (DX). I know sweetie, it took me years to find one. I still recall the day I finally was DX. I wasn't crazy about the DX but I was absolutely giddy that my search was finally at an end. I hope that you too will find an end - an answer!
Good Luck dear, and hang in there!
Good Luck dear, and hang in there!
Hi, Curly03... I know you don't know me, but I happened to see your journal on my sidebar. I'm sorry you're feeling so poorly. I'm the Community Leader of the Thyroid Disorders Community and I'm wondering if you've had your thyroid levels tested? Your low vitamin D caught my attention because many people with thyroid condition have low vitamin D levels and vitamin D is necessary for proper metabolism of thyroid hormones. Stomach issues that seem to be gall bladder related, such as acid reflux/GERD are also very common with thyroid malfunction, as are either rapid or slow heart rates. I have Hashimoto's Thyroiditis (autoimmune thyroid disease), which ultimately causes hypothyroidism and I had all of these at one time or another, including gall bladder attacks that led to having my gall bladder removed. Nothing helped the acid reflux/GERD until I was diagnosed with hypothyroidism and my thyroid hormone levels were brought to normal for me - not just normal on the lab report. There are many other symptoms that can accompany thyroid malfunction, as well.
Tests you need to check for proper thyroid function are Free T3 and Free T4, which are actual thyroid hormones, along with the inevitable TSH, which is a pituitary hormone. Many doctors will only test TSH and if that's normal, they refuse to test the Free T3 and Free T4. Thyroid antibodies should also be tested to determine if you have an autoimmune thyroid condition, along with vitamin B-12 and ferritin, since a lot of people with thyroid condition are low in both of those, as well as the vitamin D. I also have Pernicious Anemia, which is another autoimmune disease in which one doesn't absorb vitamin B-12 through the stomach.
Anyway, I hope you don't mind my crashing your journal... It's very frustrating to be ill and not be able to get a diagnosis of what's wrong, especially when there are so many things that can cause the same symptoms. Good luck. Let me if I can help.
Tests you need to check for proper thyroid function are Free T3 and Free T4, which are actual thyroid hormones, along with the inevitable TSH, which is a pituitary hormone. Many doctors will only test TSH and if that's normal, they refuse to test the Free T3 and Free T4. Thyroid antibodies should also be tested to determine if you have an autoimmune thyroid condition, along with vitamin B-12 and ferritin, since a lot of people with thyroid condition are low in both of those, as well as the vitamin D. I also have Pernicious Anemia, which is another autoimmune disease in which one doesn't absorb vitamin B-12 through the stomach.
Anyway, I hope you don't mind my crashing your journal... It's very frustrating to be ill and not be able to get a diagnosis of what's wrong, especially when there are so many things that can cause the same symptoms. Good luck. Let me if I can help.
Hello i was wondering about my thyroid as well because i know it can cause similar symptoms last year i had my doctor to test me for everything related to thyroid but it was normal. This time i think she only tested my tsh and said it was boarderline but not abnormal so at the moment theirs nothing that needs to be done but keep an eye on it in a few months. I have had b12 deffiency when i had my gallbladder but now its ok. I don't understand why i keep getting low on different vitamins i just figure from my stomach but its still odd. My acid issue is also strange because i dont get heartburn and laying down after eating helps me. Thats why i assume i have POTS along with my heart rate going up 30bpm when i stand. I have went to a cardiologist last September she did all kinds of tests and just told me my heart rate goes up but everything was normal so i never got another appointment. On the good news the nose spray and vitamin D3 is helping me. Im finally not feeling so dizzy or like im going to fall over. My stomach just hurts from trapped air. It dont seem to matter what i eat sometimes i do fine other times i feel like a balloon, or have other symptoms until i lay down. Hopefully they will figure all this out soon. Thanks for the replies.
Update the cardiologist wants me to do more lab work, an echo gram, and a heart monitor tomorrow afternoon. I have all these tests before but they were all normal. Hopefully it will catch my heart palpating like it does randomly. It should show where my heart increases just while doing simple things.
Hi again... As far as the thyroid issues are concerned, it's important to note that just because the results are in the normal ranges, doesn't mean they're okay for you... If results are "borderline", that's not good... many of us are very ill with borderline test results. We're all different and doctors don't seem to realize that one size doesn't fit all. Do you remember what your TSH was? Does your doctor know that most labs use an old reference that's much higher than is currently recommended and because of that, many people are left ill when they should be treated?
The same goes for Vitamin B-12... do you know what your actual level is? The reference range used by most labs is very broad... typically, something like 200-900 or the one my lab uses is 200-1100. Some countries consider anything below 500 as deficient. My lab actually puts a note on the report that anything under 500 can cause symptoms of deficiency and I find that in order to keep symptoms at bay, I have to keep my level at the very top of the range.
Please understand, I'm not trying to be hard on you, by any means; I just find it very alarming when doctors tell someone who is ill and undiagnosed, that their thyroid levels are "borderline", but nothing needs to be done right now, just retest in a few months... just think, if you were started on medication now and your levels were brought above borderline, in a few months, you might feel normal... wouldn't that be wonderful?
Heart palpitations are also very common with thyroid issues... I had them horribly bad when I was quite hypo, but they're also very common with hyperthyroidism. You didn't mention whether you're borderline hypo or hyper. A lot of symptoms cross over and apply to them both.
I'm glad to hear that you're feeling a bit better, though. As I noted above, vitamin D is necessary for proper metabolism of thyroid hormones, so that could be helping, but it won't help enough. Vitamin D levels need to be around 50-60 in order to be adequate, not just "in range". There are things you can do to help prevent trapped air in your tummy. For instance, don't drink through straws, take small sips instead of gulping your drink and be careful not to swallow extra air with whatever you're eating/drinking, etc.
Do you know what labs the cardiologist wants to have done? I'd sure be interested in seeing results when you get them back. Is the monitor you're going to have a "holter monitor"? I had that twice. Each time I had to wear it for 24 hrs. It's not very comfortable, but it does provide some very important and interesting information. Mine showed palpitations, but it also showed very low heart rate, which is common for hypothyroidism. Sometimes, I "felt" like my heart was racing, but it really wasn't; it's just that my heart rate had slowed down so much, due to hypothyroidism that anything over 65 bpm felt like it was racing. Then other times it really would race and I felt like I'd jump out of my skin. I also had missed and irregular beats - they were all due to hypothyroidism and once I got my thyroid levels stabilized where I needed them, the heart issues went away.
I'd also be interested in seeing your thyroid hormone results - not just the TSH results that you recently had done, but the "everything related to thyroid" that you had last year, if you wouldn't mind posting those with reference ranges or you can send me a PM, if you prefer... I wonder if you've ever been tested for thyroid antibodies to determine if you have an autoimmune thyroid disease... Hashimoto's Thyroiditis is the most prevalent and can be present for years before most of us know we have it.
I do believe you might have more than one thing going on and POTS might be one of them, but I'd also feel better if I could see your actual thyroid hormone levels, since your doctor admitted that was "borderline". I know how I felt when I was borderline and I was already on medication - just not a high enough dosage.
Again, please understand, I don't mean to be hard on you... I just remember too well what it felt like to have hypothyroidism and have my doctor tell me there was nothing wrong with me. When I finally convinced them to take me seriously and test my thyroid, my TSH was 55.5, which is much more than "borderline" and they still hadn't wanted to do thyroid tests... I was "very" sick. I'd never want anyone else to feel like I did or to have it take so long to get well. I've been on medication since early 2008 and it's just been the past couple of years that I've felt "good" because I had pcp doctors who didn't know how to treat thyroid conditions and kept trying to undermine what my endo was doing, which was the right thing.
Unfortunately, too many doctors don't understand how to test, diagnose and treat thyroid disorders and as a result, many patients are kept ill for far too long...
So now, I'll get off my soap box and wish you well.
Barb
The same goes for Vitamin B-12... do you know what your actual level is? The reference range used by most labs is very broad... typically, something like 200-900 or the one my lab uses is 200-1100. Some countries consider anything below 500 as deficient. My lab actually puts a note on the report that anything under 500 can cause symptoms of deficiency and I find that in order to keep symptoms at bay, I have to keep my level at the very top of the range.
Please understand, I'm not trying to be hard on you, by any means; I just find it very alarming when doctors tell someone who is ill and undiagnosed, that their thyroid levels are "borderline", but nothing needs to be done right now, just retest in a few months... just think, if you were started on medication now and your levels were brought above borderline, in a few months, you might feel normal... wouldn't that be wonderful?
Heart palpitations are also very common with thyroid issues... I had them horribly bad when I was quite hypo, but they're also very common with hyperthyroidism. You didn't mention whether you're borderline hypo or hyper. A lot of symptoms cross over and apply to them both.
I'm glad to hear that you're feeling a bit better, though. As I noted above, vitamin D is necessary for proper metabolism of thyroid hormones, so that could be helping, but it won't help enough. Vitamin D levels need to be around 50-60 in order to be adequate, not just "in range". There are things you can do to help prevent trapped air in your tummy. For instance, don't drink through straws, take small sips instead of gulping your drink and be careful not to swallow extra air with whatever you're eating/drinking, etc.
Do you know what labs the cardiologist wants to have done? I'd sure be interested in seeing results when you get them back. Is the monitor you're going to have a "holter monitor"? I had that twice. Each time I had to wear it for 24 hrs. It's not very comfortable, but it does provide some very important and interesting information. Mine showed palpitations, but it also showed very low heart rate, which is common for hypothyroidism. Sometimes, I "felt" like my heart was racing, but it really wasn't; it's just that my heart rate had slowed down so much, due to hypothyroidism that anything over 65 bpm felt like it was racing. Then other times it really would race and I felt like I'd jump out of my skin. I also had missed and irregular beats - they were all due to hypothyroidism and once I got my thyroid levels stabilized where I needed them, the heart issues went away.
I'd also be interested in seeing your thyroid hormone results - not just the TSH results that you recently had done, but the "everything related to thyroid" that you had last year, if you wouldn't mind posting those with reference ranges or you can send me a PM, if you prefer... I wonder if you've ever been tested for thyroid antibodies to determine if you have an autoimmune thyroid disease... Hashimoto's Thyroiditis is the most prevalent and can be present for years before most of us know we have it.
I do believe you might have more than one thing going on and POTS might be one of them, but I'd also feel better if I could see your actual thyroid hormone levels, since your doctor admitted that was "borderline". I know how I felt when I was borderline and I was already on medication - just not a high enough dosage.
Again, please understand, I don't mean to be hard on you... I just remember too well what it felt like to have hypothyroidism and have my doctor tell me there was nothing wrong with me. When I finally convinced them to take me seriously and test my thyroid, my TSH was 55.5, which is much more than "borderline" and they still hadn't wanted to do thyroid tests... I was "very" sick. I'd never want anyone else to feel like I did or to have it take so long to get well. I've been on medication since early 2008 and it's just been the past couple of years that I've felt "good" because I had pcp doctors who didn't know how to treat thyroid conditions and kept trying to undermine what my endo was doing, which was the right thing.
Unfortunately, too many doctors don't understand how to test, diagnose and treat thyroid disorders and as a result, many patients are kept ill for far too long...
So now, I'll get off my soap box and wish you well.
Barb
Post a Comment