Aa
Im begging someone to help me with this!
I really need help with this i am going out of my mind! ANY suggestions or help would be so welcome!
About 2 years ago now i started feeling like my breathing wasnt right. it felt too shallow like i couldnt take in enough air. Then i started getting very bad headakes every single day and dizziness all day every day too the point i couldnt do anything normal anymore because i was too scared. I went to my doctor and he was baffled and basically just wrote it off. Its been two years now and my health has got continuously worse. every day i experience these symptoms now..
Heart palpitations
'fluttering' in my chest.
Rapid heart beat whenever i move in the slightest.
Dizziness all day every day
Head pain
Pressure in my head like its filled up with something and about to explode
Pains/tingling & numbness in both legs and arms(it varies) And face.
Chest pain
Very out of breath even when just sitting still
And the most recent symtpoms are my ears feeling all blocked and a kind of wave of numbness + tingling (very bad feeling) feeling like its washing through my brain which makes me feel like i cant breath or think at all while it happens (normally lasts about 3-4 seconds) It kind of feels like my brain just cuts out.
I am nearly 18 years old, female, not preganant, a bit underweight.
I have had ALOT of blood tests, thyroid is normal, blood cells are normal, Bp normal, An echocardiogram came back fine, Wore a 7 day ecg monitor which showed my palpitations but the cardiologist said it was ok?? Had a brain MRI scan from the neurologist which he said was 'essentialy normal' Im being sent to a breathing clinic next month but other than this no one seems to know whats going on or how to help. im not sure they even want to!!
Sorry for such a long Question please any help would be SO appreciated!
Dawn
About 2 years ago now i started feeling like my breathing wasnt right. it felt too shallow like i couldnt take in enough air. Then i started getting very bad headakes every single day and dizziness all day every day too the point i couldnt do anything normal anymore because i was too scared. I went to my doctor and he was baffled and basically just wrote it off. Its been two years now and my health has got continuously worse. every day i experience these symptoms now..
Heart palpitations
'fluttering' in my chest.
Rapid heart beat whenever i move in the slightest.
Dizziness all day every day
Head pain
Pressure in my head like its filled up with something and about to explode
Pains/tingling & numbness in both legs and arms(it varies) And face.
Chest pain
Very out of breath even when just sitting still
And the most recent symtpoms are my ears feeling all blocked and a kind of wave of numbness + tingling (very bad feeling) feeling like its washing through my brain which makes me feel like i cant breath or think at all while it happens (normally lasts about 3-4 seconds) It kind of feels like my brain just cuts out.
I am nearly 18 years old, female, not preganant, a bit underweight.
I have had ALOT of blood tests, thyroid is normal, blood cells are normal, Bp normal, An echocardiogram came back fine, Wore a 7 day ecg monitor which showed my palpitations but the cardiologist said it was ok?? Had a brain MRI scan from the neurologist which he said was 'essentialy normal' Im being sent to a breathing clinic next month but other than this no one seems to know whats going on or how to help. im not sure they even want to!!
Sorry for such a long Question please any help would be SO appreciated!
Dawn
Have you ever researched dysautonomia? There is forum on here and there is info on ndrf's (National Dysautonomia Research Foundation) web site (it's an org). Did they also test your plasma free metaneprhines & catecholamines? These can be an issue with a rare tumor on an adrenal gland called a pheochromocytoma... however, usually you would have episodes of high BP with that. But, if you had dysautonomia, the catecholamines and plasma free metanephrines can often have out of range numbers.
Did they do a separate MRI of pituitary (different from general MRI scan)? If you have a large enough adenoma, it can cause headache... but they might want to do a complete endocrine testing if they haven't already to see if anything comes back out of the ordinary before ordering it.
Have you looked into fibromyalgia, one of the spectrum of dysautonomia disorders?
Did they do a separate MRI of pituitary (different from general MRI scan)? If you have a large enough adenoma, it can cause headache... but they might want to do a complete endocrine testing if they haven't already to see if anything comes back out of the ordinary before ordering it.
Have you looked into fibromyalgia, one of the spectrum of dysautonomia disorders?
hi thanks you for your reply.
I hadnt ever heard of that untill you just said it then. I looked it up online and ALOT of the sumptoms im feeling come up under that list!
Also im sorry to sound supid but i dont even know what my 'plasma free metanephrines' are so im pretty sure theyve never tested anything like that!
and no i dont think they did a mri of mituitary..just a general one. They only really did that because they could see how distressed i was becoming by it all and realised if they didnt do something id just get worse.
Is this a common thing and how would i go about mentioning this to my doctor? what are the tests for a diagnosis?
Your reply has been brilliant, its nice to know theres still people out there who want to help!
Thanks, dawn.
I hadnt ever heard of that untill you just said it then. I looked it up online and ALOT of the sumptoms im feeling come up under that list!
Also im sorry to sound supid but i dont even know what my 'plasma free metanephrines' are so im pretty sure theyve never tested anything like that!
and no i dont think they did a mri of mituitary..just a general one. They only really did that because they could see how distressed i was becoming by it all and realised if they didnt do something id just get worse.
Is this a common thing and how would i go about mentioning this to my doctor? what are the tests for a diagnosis?
Your reply has been brilliant, its nice to know theres still people out there who want to help!
Thanks, dawn.
I'm not sure which thing you are talking about that you looked up. Dysautonomia affects a lot of people and there are different ways it affects them.
Pheochromocytoma is rare, usually benign, but can be deadly if it goes undiagnosed. Plasma free metanephrines is one of the most sensitive tests to screen for this tumor of an adrenal gland. It also can show if you have a hyperadrenergic state (which may be being caused by dysautonomia). If I recall correctly from my reading in the past, it tests the inactive metabolites of your catecholamines- epinephrine (adrenaline) and norepinephrine (noradrenaline).
You may want to get your catecholamines (active epineprhine and norepinephrine) tested as well. I have dysautonomia in the form of postural orthostatic tachycardia syndrome (P.O.T.S.), and nearly always one of these levels is outside the normal range when I am tested. I am still waiting to see if they will rule out the diagnosis of pheochromoctyoma with me. But likely, I just have the hyperadrergic form of P.O.T.S..
If you want to get tested for fibromyalgia, you probably would get the best help from a rheumatologist knowledgable about it. They test "trigger points" to see if you have it.
If they test all the hormones produced by your pituitary and any of them comes outside the normal range, they may be willing to do an MRI scan. There are however, non-functioning adenomas of the pituitary as well that don't emit hormones.
Regarding your thyroid- did they test just TSH, or did they test T3, T4, and calcitonin as well?
Pheochromocytoma is rare, usually benign, but can be deadly if it goes undiagnosed. Plasma free metanephrines is one of the most sensitive tests to screen for this tumor of an adrenal gland. It also can show if you have a hyperadrenergic state (which may be being caused by dysautonomia). If I recall correctly from my reading in the past, it tests the inactive metabolites of your catecholamines- epinephrine (adrenaline) and norepinephrine (noradrenaline).
You may want to get your catecholamines (active epineprhine and norepinephrine) tested as well. I have dysautonomia in the form of postural orthostatic tachycardia syndrome (P.O.T.S.), and nearly always one of these levels is outside the normal range when I am tested. I am still waiting to see if they will rule out the diagnosis of pheochromoctyoma with me. But likely, I just have the hyperadrergic form of P.O.T.S..
If you want to get tested for fibromyalgia, you probably would get the best help from a rheumatologist knowledgable about it. They test "trigger points" to see if you have it.
If they test all the hormones produced by your pituitary and any of them comes outside the normal range, they may be willing to do an MRI scan. There are however, non-functioning adenomas of the pituitary as well that don't emit hormones.
Regarding your thyroid- did they test just TSH, or did they test T3, T4, and calcitonin as well?
hi thanks for replying again, i looked up Dysautonomia (Which i'd never heard of before) so im sure the doctors have never even considered this. It lists so many of the symptoms i am feeling, But when i was looking up i found that It said quite alot it could be diagnosed through an echocardiogram in some cases..which i had and the cardiologist said was normal. But maybe if i do have this its just not that particular type.
How was you diagnosed with this?
Im going to print of as much infromation as possible and take it into my doctors along with some of your messages which have been so helpful! you certainly seem to know what your talking about.
As for my thyroid test i think it was just the most basic testing TSH. And would a tumour on the glands not show up on a general MRI then?
Thanks so much for helping me with this.
Dawn
How was you diagnosed with this?
Im going to print of as much infromation as possible and take it into my doctors along with some of your messages which have been so helpful! you certainly seem to know what your talking about.
As for my thyroid test i think it was just the most basic testing TSH. And would a tumour on the glands not show up on a general MRI then?
Thanks so much for helping me with this.
Dawn
I was diagnosed with Postural Orthostatic Tachycardia Test by means of a "tilt table" test. It was performed by an electrophysiologist. When they gave me nitroglycerine and tilted me up a second time, it was too much for my body and I passed out.
If you haven't already, check the ndrf website (its an org). They have helpful information and a section where articles are posted. There is a whole spectrum of disorders that fall into the "dysautonomia" family. Potsplace is another website (this one's a com) you might check out. P.O.T.S. is only one form of dysautonomia. Hypovolomia can be a problem with some people with dysautonomia.
The pituitary gland takes a special MRI separate from a general brain MRI.
Another thing someone told me to get checked (I'm a migraine sufferer), but I think would show on a general brain MRI is Chiarri malformation.
If they are willing to do another blood test for the thyroid, I recommend try especially to get T3 checked.
Don't forget catecholamines and definitely plasma free metanephrines regarding your heart rate! I wish you well and keep me posted, please!
If you haven't already, check the ndrf website (its an org). They have helpful information and a section where articles are posted. There is a whole spectrum of disorders that fall into the "dysautonomia" family. Potsplace is another website (this one's a com) you might check out. P.O.T.S. is only one form of dysautonomia. Hypovolomia can be a problem with some people with dysautonomia.
The pituitary gland takes a special MRI separate from a general brain MRI.
Another thing someone told me to get checked (I'm a migraine sufferer), but I think would show on a general brain MRI is Chiarri malformation.
If they are willing to do another blood test for the thyroid, I recommend try especially to get T3 checked.
Don't forget catecholamines and definitely plasma free metanephrines regarding your heart rate! I wish you well and keep me posted, please!
ive heard quite alot about tilt tests, what type of specialist/doctor would do this?
I spoke to me doctor today and told him all about it and how exact it was to the symptoms ive been feeling and his answer was 'this is something a neurologist deals with so i think he would of found anything like this especially because your mri results where so good' and that was that.
Im very angry that hes just written it off so easily without even considering it so im not trying to find out if theres any other kind of doctors i could go through about this to maybe have a more firm diagnosis because i want to be SURE its not t hat before my gp wirtes it off.
I am going to look at the website and continue with this, in 2 years ive never found anything so possible that it could be to make me feel this way and im so thankful that you mentioned this to me.
If you have any information at all that you think could help me with this and trying to get tested somehow id be really greatfull.
Thanks so much again, Dawn
I spoke to me doctor today and told him all about it and how exact it was to the symptoms ive been feeling and his answer was 'this is something a neurologist deals with so i think he would of found anything like this especially because your mri results where so good' and that was that.
Im very angry that hes just written it off so easily without even considering it so im not trying to find out if theres any other kind of doctors i could go through about this to maybe have a more firm diagnosis because i want to be SURE its not t hat before my gp wirtes it off.
I am going to look at the website and continue with this, in 2 years ive never found anything so possible that it could be to make me feel this way and im so thankful that you mentioned this to me.
If you have any information at all that you think could help me with this and trying to get tested somehow id be really greatfull.
Thanks so much again, Dawn
An electrophysiologist cardiologist, not a neurologist, is who would conduct a tilt table test. You might conduct your own experiment at home. Lay down flat for 20 minutes, take your pulse at your wrist. Stand up. After three minutes, take your pulse again. If you have an automatic blood pressure cuff, use it for your blood pressure after the 20 minutes of lying down and after the three minutes of standing as well. Omron makes one that's considered pretty reliable (blood pressure cuff). Please, let me know the numbers.
I initially was diagnosed with inappropriate sinus tachycardia before I had the tilt table test. Inappropriate sinus tachycardia can happen even while at rest.
Did the 7 day holter monitor show sinus tachycardia, supraventicular tachycardia, or ? Was the GP even willing to test plasma free metanephrines and catecholamines? What about your T3? If your blood pressure tends to run low, it might be that your norepinephrine will be high from trying to maintain your blood pressure to keep you from fainting.
It might help with your doctor to take in the articles written by reputable sources online. Underline the symptoms you have and the type of testing that you want done. Mayo clinic talks about tilt table testing, for instance. I don't know if they are known where you live. Vanderbilt University in Tennessee, USA is doing research and there are articles posted on ndrf website.
I initially was diagnosed with inappropriate sinus tachycardia before I had the tilt table test. Inappropriate sinus tachycardia can happen even while at rest.
Did the 7 day holter monitor show sinus tachycardia, supraventicular tachycardia, or ? Was the GP even willing to test plasma free metanephrines and catecholamines? What about your T3? If your blood pressure tends to run low, it might be that your norepinephrine will be high from trying to maintain your blood pressure to keep you from fainting.
It might help with your doctor to take in the articles written by reputable sources online. Underline the symptoms you have and the type of testing that you want done. Mayo clinic talks about tilt table testing, for instance. I don't know if they are known where you live. Vanderbilt University in Tennessee, USA is doing research and there are articles posted on ndrf website.
I'm sorry about the typo of your name last post.
In your many blood tests, have they specifically tested your blood iron level, total iron binding capacity (TIBC), and ferritin levels? My tachycardia in the past was aggravated by iron deficiency, even when my CBC was normal. I was having chest pains too. After an abnormal nuclear test, I was in the ER for tachycardia and chest pain. They did an angiogram, which came back normal. Sometime afterward, my internal medicine dr. at the time thought to measure iron, not just CBC. Found out I was anemic. He told of a link between iron deficiency and tachycardia.
Nowadays, I'm not anemic, and I still have the orthostatic tachycardia, but the pulse doesn't tend to get quite as high as it did when I was anemic.
A recent holter monitor for 48 hours showed the highest heart rate being in the 150s. This was when I got up after sleeping a while.
In your many blood tests, have they specifically tested your blood iron level, total iron binding capacity (TIBC), and ferritin levels? My tachycardia in the past was aggravated by iron deficiency, even when my CBC was normal. I was having chest pains too. After an abnormal nuclear test, I was in the ER for tachycardia and chest pain. They did an angiogram, which came back normal. Sometime afterward, my internal medicine dr. at the time thought to measure iron, not just CBC. Found out I was anemic. He told of a link between iron deficiency and tachycardia.
Nowadays, I'm not anemic, and I still have the orthostatic tachycardia, but the pulse doesn't tend to get quite as high as it did when I was anemic.
A recent holter monitor for 48 hours showed the highest heart rate being in the 150s. This was when I got up after sleeping a while.
hi thanks for the replys, I dont have a blood pressure cuff but i couldnt definately look into getting one.
As for the day holter monitor they showed me a brief glimpse of my results told me they was 'fine' and that was it. They never went into details or took notice of me when i pointed out my palpitation ON the graph which could be clearly seen.
I did find as much information as possible on the subjects online from various websites and take it to my doctor, and i guess this answers your other question too. he was not willing to test anything basically. He just said the neurologist would have found anything like this and that because my mri scan was fine he highly doubted it..and that was it.
To be honest with you its only recently ive started to take control and tell the doctors that i want to KNOW what there testing me for before that they always seems hesitant to tell me so im not one hundred percent sure if ive pecifically had my blood iron tested, ive been told numouros times that im not anemic so maybe they have maybe they havent.
I get alot of chest pains aswell but i feel all of my symptoms even when im sitting resting not just when i stand up or move so would a tilt test even help?
Also im looking into changing doctors because if my doctor doesnt belive me i dont know how im ever going to get all of this diagnosed and find out what it is.
do you still get symptoms now? and what do you use to treat/help it?
Thanks, dawn
As for the day holter monitor they showed me a brief glimpse of my results told me they was 'fine' and that was it. They never went into details or took notice of me when i pointed out my palpitation ON the graph which could be clearly seen.
I did find as much information as possible on the subjects online from various websites and take it to my doctor, and i guess this answers your other question too. he was not willing to test anything basically. He just said the neurologist would have found anything like this and that because my mri scan was fine he highly doubted it..and that was it.
To be honest with you its only recently ive started to take control and tell the doctors that i want to KNOW what there testing me for before that they always seems hesitant to tell me so im not one hundred percent sure if ive pecifically had my blood iron tested, ive been told numouros times that im not anemic so maybe they have maybe they havent.
I get alot of chest pains aswell but i feel all of my symptoms even when im sitting resting not just when i stand up or move so would a tilt test even help?
Also im looking into changing doctors because if my doctor doesnt belive me i dont know how im ever going to get all of this diagnosed and find out what it is.
do you still get symptoms now? and what do you use to treat/help it?
Thanks, dawn
I would definitely look around for a better doctor who listens and cares about their patients and is not hesitant to be thorough in testing to try to diagnose you. I think a lot of doctors (from reading posts on a different forum) decide a person is not anemic just because the patient's hemoglobin and hematocrit and red blood cells are all in normal range. BUT, I'm living proof, that this is not always so. It is not at ALL uncommon for a menstruating female to have iron deficiency.
If they won't test you, it would be worth it to start taking one iron pill a day, which in the USA, you can get over the counter. 325 mg ferrous sulfate is what you would get. For best absorption, you would need to take it with at least 250 mg of vitamin C along with it... if vit. C bothers your stomach or gives you mouth sores, try ester-C. And you don't want to take calcium or eat antiacids to close to taking the iron w/the vitamin C. If you get constipated from the iron, just be sure and eat enough fiber, and take miralax or something if you need to. If you take it a few weeks and start to feel better and the tachycardia gets less, you can suspect that you were low in iron. It takes longer, though, to get your iron stores up with only taking one pill a day.
You could ask your current doctor for ALL your lab records, to take to a doctor for a second opinion and potentially, to make that second opinion doctor, if you are happier with the way they treat you, your new primary care physician. And I would call the cardiologist and ask them to release to you the hour by hour results of your holter monitor test, along with the final report. You might need to sign a medical record release form. Ask them to tell you what kind of tachycardia you were having. Since they said it was okay, it likely was the sinus tachycardia variety. In order to be defined as tachycardia, it has to be over 100 beats per minute.
If you don't have a problem where the tachycardia gets worse when you are in an upright position, than the tilt table is likely not for you. You might want to look more about innappropriate sinus tachycardia. Since your primary physician seems to think the neurologist would have looked into all of your concerns, including endocrinology related ones, maybe you could call your neurologist and ask them what, if any, blood tests they ran. (I would do this after you get the records from your current primary care physician and see all the tests they have copies of that were run and if you don't see T3, and other endocrine tests, especially catecholamines and plasma free metanephrines, blood iron and ferritin (iron stores) blood levels, ). I've been to neurologists for migraines, and frankly, I don't remember them ordering ANY blood tests at all.
If you had an adrenal tumor called a pheochromocytoma, you would not always have to have high blood pressure, because sometimes the tumor is silent and not putting out high levels of catecholamines.
You can still have an overactive thyroid and have a normal TSH level... for instance, if you had a "hot" nodule on your thyroid that was emitting higher than normal levels of thyroid hormones causing hyperthyroidism.
Have you had a 24 hour urine collection measuring your sodium output? This can be an indicator as to whether or not your hypovolemic.
About me, I still have problems with palpitations, which sometimes can rachet up headache pain. I get short of breath when walking faster than a leisurely gait. My iron is normal now, because, as my nickname suggests, I no longer have menstruation issues (I had severe endometriosis). If I've had hot water hitting me (I use a chair) and I reach up, I feel light headed and my vision can start to go. I don't pass out as some do from dysautonomia (other than the nitroglycerine induced faint on the tilt table test). If I eat a large meal, or sometimes, I think if I eat certain foods, my tachycardia acts up. My heart rate is up and down.... see next post for a sampling of my own holter monitor results from this year.
If they won't test you, it would be worth it to start taking one iron pill a day, which in the USA, you can get over the counter. 325 mg ferrous sulfate is what you would get. For best absorption, you would need to take it with at least 250 mg of vitamin C along with it... if vit. C bothers your stomach or gives you mouth sores, try ester-C. And you don't want to take calcium or eat antiacids to close to taking the iron w/the vitamin C. If you get constipated from the iron, just be sure and eat enough fiber, and take miralax or something if you need to. If you take it a few weeks and start to feel better and the tachycardia gets less, you can suspect that you were low in iron. It takes longer, though, to get your iron stores up with only taking one pill a day.
You could ask your current doctor for ALL your lab records, to take to a doctor for a second opinion and potentially, to make that second opinion doctor, if you are happier with the way they treat you, your new primary care physician. And I would call the cardiologist and ask them to release to you the hour by hour results of your holter monitor test, along with the final report. You might need to sign a medical record release form. Ask them to tell you what kind of tachycardia you were having. Since they said it was okay, it likely was the sinus tachycardia variety. In order to be defined as tachycardia, it has to be over 100 beats per minute.
If you don't have a problem where the tachycardia gets worse when you are in an upright position, than the tilt table is likely not for you. You might want to look more about innappropriate sinus tachycardia. Since your primary physician seems to think the neurologist would have looked into all of your concerns, including endocrinology related ones, maybe you could call your neurologist and ask them what, if any, blood tests they ran. (I would do this after you get the records from your current primary care physician and see all the tests they have copies of that were run and if you don't see T3, and other endocrine tests, especially catecholamines and plasma free metanephrines, blood iron and ferritin (iron stores) blood levels, ). I've been to neurologists for migraines, and frankly, I don't remember them ordering ANY blood tests at all.
If you had an adrenal tumor called a pheochromocytoma, you would not always have to have high blood pressure, because sometimes the tumor is silent and not putting out high levels of catecholamines.
You can still have an overactive thyroid and have a normal TSH level... for instance, if you had a "hot" nodule on your thyroid that was emitting higher than normal levels of thyroid hormones causing hyperthyroidism.
Have you had a 24 hour urine collection measuring your sodium output? This can be an indicator as to whether or not your hypovolemic.
About me, I still have problems with palpitations, which sometimes can rachet up headache pain. I get short of breath when walking faster than a leisurely gait. My iron is normal now, because, as my nickname suggests, I no longer have menstruation issues (I had severe endometriosis). If I've had hot water hitting me (I use a chair) and I reach up, I feel light headed and my vision can start to go. I don't pass out as some do from dysautonomia (other than the nitroglycerine induced faint on the tilt table test). If I eat a large meal, or sometimes, I think if I eat certain foods, my tachycardia acts up. My heart rate is up and down.... see next post for a sampling of my own holter monitor results from this year.
The cardiologist office pointed out that my average was good. The highest average I had was 100 beats per minute. I will give you a sampling of some of the hours of the minimum and maximum of the hour...
The hour minimum pulse maximum pulse
11 AM 68 125
12 PM 72 124
1 PM 71 118
7 PM 70 117
8 PM 67 118
9 PM 65 121
10 PM 56 117
sleeping 12 AM 60 91
1 AM 63 97
sleeping, got up to go to the bathroom with this next one
2 AM 60 148
sleeping, got up later in the morning with the next one
6 AM 62 133
Think I went back to bed, than got up a little later with the next one
7 AM 61 145
The biggest leap in beats per minute came the next morning when I got up from sleeping to go to the bathroom again
1 AM 60 152
The hour minimum pulse maximum pulse
11 AM 68 125
12 PM 72 124
1 PM 71 118
7 PM 70 117
8 PM 67 118
9 PM 65 121
10 PM 56 117
sleeping 12 AM 60 91
1 AM 63 97
sleeping, got up to go to the bathroom with this next one
2 AM 60 148
sleeping, got up later in the morning with the next one
6 AM 62 133
Think I went back to bed, than got up a little later with the next one
7 AM 61 145
The biggest leap in beats per minute came the next morning when I got up from sleeping to go to the bathroom again
1 AM 60 152
Hey, sorry its taken me so long to reply had two head injurys in the last week and concussion so as you can imagine it hasnt helped with how im feeling at all.
The neurologist i've been seeing in the past isnt really a ring up and ask him kind of doctor. I have to be referred by my doctor and have an appointment before i can speak to him..Ive been looking for other neurologists in the are but apparently hes the only one i can see!
I have been definately considering asking for copies of my MRI results and Also as you suggested my 7 day ecg results.Only thing is id need to take these to another specialist for a second oppinion wouldnt i?
Can you request your information through there secreatary do you know?
Also i havent had a 24 hour urine sample and im sure they've only done the basic blood tests for thyroid but i'll look into it.
I looked at your holter results and to be honest without mine i cant really say how likely it is i could be having the same thing as you.
All i know is everyday i feel worse my head pains and dizziness just keeps on coming and i dont know what else i can do to help myself if the doctors wont help me.
Also if i request copys of my medical records + tests do they have to say yes?
Thanks, dawn.
The neurologist i've been seeing in the past isnt really a ring up and ask him kind of doctor. I have to be referred by my doctor and have an appointment before i can speak to him..Ive been looking for other neurologists in the are but apparently hes the only one i can see!
I have been definately considering asking for copies of my MRI results and Also as you suggested my 7 day ecg results.Only thing is id need to take these to another specialist for a second oppinion wouldnt i?
Can you request your information through there secreatary do you know?
Also i havent had a 24 hour urine sample and im sure they've only done the basic blood tests for thyroid but i'll look into it.
I looked at your holter results and to be honest without mine i cant really say how likely it is i could be having the same thing as you.
All i know is everyday i feel worse my head pains and dizziness just keeps on coming and i dont know what else i can do to help myself if the doctors wont help me.
Also if i request copys of my medical records + tests do they have to say yes?
Thanks, dawn.
I'm so sorry you've had two head injuries! Did that happen because of your physical symptoms?
Regarding the thyroid, my dad got a book out of the library, and it looks like TSH is a good indicator of what's going on with that. The only thing I can think of where it might not always show up what's really going on with your thyroid (aside from a pituitary tumor) is if you had a hot nodule or something on the thyroid that was intermittantly putting out high levels of thyroid hormone.
You would ask for the medical records department of your doctor's office. You might have to fill out a medical record release form. If you are asking for a copy for your own self, and not to take to a second opinion doctor, they may want to charge for the copying. But, it would be worth it, I think. The other thing is, you could ask them to release the records to a specific doctor you have picked out for a second opinon, putting that doctor's address. Often, places here in the U.S.A. anyway, won't charge for that service. Even the kinds of doctors who do not want to call patients back, if you leave a message asking about labs, will have their nurse call you back. And if they are slow about it, you just need to be persistent.... the squeaky wheel tends to get the grease, if you know what I mean.
Have you had your GFR tested lately? A close relative of mine recently had a low GFR and we pursued it with a doctor visit. The doctor ordered an ultrasound of the kidneys and found that one of them was small and scarred. It seems like doctors are doing GFR testing pretty routinely nowadays here.
I hope you are recovering well from your concussion!
Regarding the thyroid, my dad got a book out of the library, and it looks like TSH is a good indicator of what's going on with that. The only thing I can think of where it might not always show up what's really going on with your thyroid (aside from a pituitary tumor) is if you had a hot nodule or something on the thyroid that was intermittantly putting out high levels of thyroid hormone.
You would ask for the medical records department of your doctor's office. You might have to fill out a medical record release form. If you are asking for a copy for your own self, and not to take to a second opinion doctor, they may want to charge for the copying. But, it would be worth it, I think. The other thing is, you could ask them to release the records to a specific doctor you have picked out for a second opinon, putting that doctor's address. Often, places here in the U.S.A. anyway, won't charge for that service. Even the kinds of doctors who do not want to call patients back, if you leave a message asking about labs, will have their nurse call you back. And if they are slow about it, you just need to be persistent.... the squeaky wheel tends to get the grease, if you know what I mean.
Have you had your GFR tested lately? A close relative of mine recently had a low GFR and we pursued it with a doctor visit. The doctor ordered an ultrasound of the kidneys and found that one of them was small and scarred. It seems like doctors are doing GFR testing pretty routinely nowadays here.
I hope you are recovering well from your concussion!
Hi thanks for the well wishes!
The concussion has definately made me feel worse.. the first one i was exhausted and un cordianted dropped something and as i stood up came into contact very hard with a sink. I really hate the feeling of un steadiness i feel all the time even when i dont hit my head im always scared im going to fall over!
Yeah i know what you mean, might have to just keep ringing my neaurologists receptionist about it then, Hes off on leave i think so i cant see him about anything but ill keep trying anyway.
I wouldnt mind paying for the charges of copying a few things like you say it might be worth it! Im just not sure i could find a doctor willing to give me a second opinion. ive got quite alot of nasty symptoms all un explained and i dont know if ill find another doctor even willing to try!
Also what test would they do for GFR? Im not sure ive had one at all!
So if there was something wrong with my pituitary gland it wouldnt show up on a general mri? So what i dont understand is why the neurologist didnt scan for that aswell? Hmmm.
Lately espeically ive noticed ive lost alot of weight, ive never been big but last month i weighed 7ish stone and i now weigh 6 and a half. Surely its not healthy to keep losing that much weight for no reason? Could this tie in with anything e've talked about do you think?
Thank so much, dawn
The concussion has definately made me feel worse.. the first one i was exhausted and un cordianted dropped something and as i stood up came into contact very hard with a sink. I really hate the feeling of un steadiness i feel all the time even when i dont hit my head im always scared im going to fall over!
Yeah i know what you mean, might have to just keep ringing my neaurologists receptionist about it then, Hes off on leave i think so i cant see him about anything but ill keep trying anyway.
I wouldnt mind paying for the charges of copying a few things like you say it might be worth it! Im just not sure i could find a doctor willing to give me a second opinion. ive got quite alot of nasty symptoms all un explained and i dont know if ill find another doctor even willing to try!
Also what test would they do for GFR? Im not sure ive had one at all!
So if there was something wrong with my pituitary gland it wouldnt show up on a general mri? So what i dont understand is why the neurologist didnt scan for that aswell? Hmmm.
Lately espeically ive noticed ive lost alot of weight, ive never been big but last month i weighed 7ish stone and i now weigh 6 and a half. Surely its not healthy to keep losing that much weight for no reason? Could this tie in with anything e've talked about do you think?
Thank so much, dawn
If your neurologist did not order endocrine related tests, aside from TSH (more likely to be ordered by an endocrinologist), than he might not think to suspect a pituitary tumor (although some of these tumors can be non-functioning... not giving any endocrine clues that it's there). But if it's large enough, a pituitary tumor can cause significant headaches and even loss of peripheral vision. And yes, it requires a separate MRI from a general brain MRI. Your pituitary is about the size of a pea, and yet its hormones have influence in so many areas. The hypothalmus, which is close by, I heard on a tv special, is not a normal shaped one in people who get cluster headaches (different from migraines).
You mentioned feeling like you're going to fall over. This to me sounds off bells in the area of vestibular problems and the ears, because a close family relative (different than the one with the kidney damage) has been tested and found to have vestibular problems. He feels off balance, particularly in shadowed lighting or on hills. He has complained before of feeling like he is going to fall over. You may want to try getting a referral to an ear nose and throat doctor to pursue the ear possibility. There is special testing to find out if you are having a vestibular problem.
The GFR, or glomerular filtration rate is calculated from blood testing. If your kidneys don't function properly, it can give rise to a whole host of symptoms that aren't pleasant, because the toxins in the body are not being cleansed out properly by the kidneys. It may not be your problem, but they should be making sure you have a normal GFR. My close relative, who had a low one for her age, was told after her small scarred kidney was recently discovered, that this can be a congenital problem or can even develop in childhood. It's amazing if that was the case with her, that they just discovered it when she's in her 30s.
Please do not forget to pursue getting your blood iron level and ferritin level measured in your blood. You should also get a T.I.B.C. with those tests, which means total iron binding capacity, which tells how much iron your body is grabbing for use. If this number is high, your body is saying I need a lot of iron. You can feel tachycardia, chest pain from the tachycardia, tiredness, lack of energy, light headed- all from being low on iron. And, if you're like me before my hysterectomy, you can have low iron, even though your CBC or complete blood count, including hemoglobin, hematocrit, and RBC are all in normal range.
Regarding your weight loss, even the tachycardia I think, can cause a little weight loss, because I think it has in the past with me. Now, I don't know if you have high catecholamines or high plasma free metanephrines, but you really should get these checked. Hyperthyroidism can cause weight loss, and they really should test your T 4 free and T 3 at the same time as your TSH, since you have lost a lot of weight recently.
Have you noticed any vision changes and or hearing changes in one or both ears?
You mentioned feeling like you're going to fall over. This to me sounds off bells in the area of vestibular problems and the ears, because a close family relative (different than the one with the kidney damage) has been tested and found to have vestibular problems. He feels off balance, particularly in shadowed lighting or on hills. He has complained before of feeling like he is going to fall over. You may want to try getting a referral to an ear nose and throat doctor to pursue the ear possibility. There is special testing to find out if you are having a vestibular problem.
The GFR, or glomerular filtration rate is calculated from blood testing. If your kidneys don't function properly, it can give rise to a whole host of symptoms that aren't pleasant, because the toxins in the body are not being cleansed out properly by the kidneys. It may not be your problem, but they should be making sure you have a normal GFR. My close relative, who had a low one for her age, was told after her small scarred kidney was recently discovered, that this can be a congenital problem or can even develop in childhood. It's amazing if that was the case with her, that they just discovered it when she's in her 30s.
Please do not forget to pursue getting your blood iron level and ferritin level measured in your blood. You should also get a T.I.B.C. with those tests, which means total iron binding capacity, which tells how much iron your body is grabbing for use. If this number is high, your body is saying I need a lot of iron. You can feel tachycardia, chest pain from the tachycardia, tiredness, lack of energy, light headed- all from being low on iron. And, if you're like me before my hysterectomy, you can have low iron, even though your CBC or complete blood count, including hemoglobin, hematocrit, and RBC are all in normal range.
Regarding your weight loss, even the tachycardia I think, can cause a little weight loss, because I think it has in the past with me. Now, I don't know if you have high catecholamines or high plasma free metanephrines, but you really should get these checked. Hyperthyroidism can cause weight loss, and they really should test your T 4 free and T 3 at the same time as your TSH, since you have lost a lot of weight recently.
Have you noticed any vision changes and or hearing changes in one or both ears?
I thought that the petuirity controlled alot of our body including temperature i think? which im also having problesm with example..hot flushes for no reason and having to sleep with a fan on full blast in december!
As for the ear thing the first thing my doctor did when i told him about everything was try me on just about every tablet for ear conditions there is and none of them helped and some made me feel worse. I think its more the dizziness combined with the headakes and feeling generally horrible that makes me feel so weak all the time.
And no then after your explanation ive never had GFR tested. Strange how you seem to know much more than most doctors! lol
with the blood iron levels im not sure how to pursue it really, it definately sounds worth it but im pretty sure i know what my doctors answer is going to be before i even suggest it.
I really do need to get those blood tests so i can see which ones of my thyroid and everything have been tested and then i can let you know and hopefully you'll be able to advise me on what i should get done.
And yes about the eye & ear things. My eye sight has been bad since all of this started i get very akey eyes, blurry vision, and quite often find it hard to focus on things. Oo also get alot of floaters in front of my eyes.
And ear is only recently maybe the last month?..Ive been feeling like there very blocked and full and sometimes ake when my head is hurting and occasional popping sounds aswell. Muffled i spose would be the best word to describe how they feel.
As for the ear thing the first thing my doctor did when i told him about everything was try me on just about every tablet for ear conditions there is and none of them helped and some made me feel worse. I think its more the dizziness combined with the headakes and feeling generally horrible that makes me feel so weak all the time.
And no then after your explanation ive never had GFR tested. Strange how you seem to know much more than most doctors! lol
with the blood iron levels im not sure how to pursue it really, it definately sounds worth it but im pretty sure i know what my doctors answer is going to be before i even suggest it.
I really do need to get those blood tests so i can see which ones of my thyroid and everything have been tested and then i can let you know and hopefully you'll be able to advise me on what i should get done.
And yes about the eye & ear things. My eye sight has been bad since all of this started i get very akey eyes, blurry vision, and quite often find it hard to focus on things. Oo also get alot of floaters in front of my eyes.
And ear is only recently maybe the last month?..Ive been feeling like there very blocked and full and sometimes ake when my head is hurting and occasional popping sounds aswell. Muffled i spose would be the best word to describe how they feel.
I and others close to me have had many physical problems and have done quite a bit of reading up. I also went to nursing school when I was a teenager, though I am not a practicing nurse.
You should notify your doctor about your recent ear symptoms and ask to be referred to an ear, nose and throat specialist (head & neck doctor) /otolaryngologist.
As far as I know, no pills would help a vestibular problem with the ear.
If I recall correctly, it is the hypothalmus that controls body temperature. However, if you are having estrogen drops, that can cause hot flashes, even in December. Tachycardia can also cause what feels like a hot flash.
I started having hot flashes long before I ever had my hysterectomy. I had tachycardia before my hysterectomy. Also, I was told I was not always ovulating (from a couple times of testing from a gyn doctor) and that my brain and ovaries were not communicating with one another. I spoke to a man who wrote a book about pituitary problems and he thought that part of my history should definitely be considered (a radiologist said I had a microadenoma on my pituitary).
I still am not sure I've got that tumor (microadenoma) as a second radiologist planted doubt about it in my mind and the hormone level that triggered the ordering of a pituitary MRI was not really an accurate level, due to stimulation of the hormone prior to the blood test. I am supposed to get another pituitary MRI this summer to see if the alledged microadenoma has grown.
You should notify your doctor about your recent ear symptoms and ask to be referred to an ear, nose and throat specialist (head & neck doctor) /otolaryngologist.
As far as I know, no pills would help a vestibular problem with the ear.
If I recall correctly, it is the hypothalmus that controls body temperature. However, if you are having estrogen drops, that can cause hot flashes, even in December. Tachycardia can also cause what feels like a hot flash.
I started having hot flashes long before I ever had my hysterectomy. I had tachycardia before my hysterectomy. Also, I was told I was not always ovulating (from a couple times of testing from a gyn doctor) and that my brain and ovaries were not communicating with one another. I spoke to a man who wrote a book about pituitary problems and he thought that part of my history should definitely be considered (a radiologist said I had a microadenoma on my pituitary).
I still am not sure I've got that tumor (microadenoma) as a second radiologist planted doubt about it in my mind and the hormone level that triggered the ordering of a pituitary MRI was not really an accurate level, due to stimulation of the hormone prior to the blood test. I am supposed to get another pituitary MRI this summer to see if the alledged microadenoma has grown.
Correction- there are vestibular problems where pills are recommended. The person close to me who has the problems doesn't take any for his particular kind.
Have you been tested with an echocardiogram (sonogram of the heart) for mitral valve prolapse? Mayo Clinic's website says:
"Mitral valve prolapse symptoms can vary widely from one person to another. They tend to be mild, develop gradually and may include:
A racing or irregular heartbeat (arrhythmia)
Dizziness or lightheadedness
Difficulty breathing or shortness of breath, often when lying flat or during physical activity
Fatigue
Chest pain that's not caused by a heart attack or coronary artery disease"
medicine net (a website that's a com) says:
"Most people with mitral valve prolapse have no symptoms, however, those who do commonly complain of symptoms such as fatigue, palpitations, chest pain, anxiety, and migraine headaches. Stroke is a very rare complication of mitral valve prolapse.
Fatigue is the most common complaint, although the reason for fatigue is not understood. Patients with mitral valve prolapse may have imbalances in their autonomic nervous system, which regulates heart rate and breathing."
Have you been tested with an echocardiogram (sonogram of the heart) for mitral valve prolapse? Mayo Clinic's website says:
"Mitral valve prolapse symptoms can vary widely from one person to another. They tend to be mild, develop gradually and may include:
A racing or irregular heartbeat (arrhythmia)
Dizziness or lightheadedness
Difficulty breathing or shortness of breath, often when lying flat or during physical activity
Fatigue
Chest pain that's not caused by a heart attack or coronary artery disease"
medicine net (a website that's a com) says:
"Most people with mitral valve prolapse have no symptoms, however, those who do commonly complain of symptoms such as fatigue, palpitations, chest pain, anxiety, and migraine headaches. Stroke is a very rare complication of mitral valve prolapse.
Fatigue is the most common complaint, although the reason for fatigue is not understood. Patients with mitral valve prolapse may have imbalances in their autonomic nervous system, which regulates heart rate and breathing."
I spoke to a doctor today about my ear problems and i think theyve put it down to the recent head injuries for now. I couldnt get an appointment to see my gp today so ill have to wait to speak to him about the other things.
The things is im not sure i think its anything to do with my ear because although that would make sense for the dizziness it doesnt account for the headakes, Breathing problems, palpitation, Numbness &tingling, chest pains...i dont see how that could be caused by my ears which is what i kept saying to my doctor at the beginning.
I did have an echocardiogram done before i wore the 7day holter but i never saw the results and they ever told me ANYTHING about them what so ever.
Even if its not whats going on with me i really feel that my doctor should be taking me more seriously about the suggestions ive been making as they fit everything im feeling (the Dysautonomia or MVP) but he just wrote it off so maybe i should get another doctors second opinion on that? And maybe try and get hold of copies of my echocardiogram results?
I had my blood pressure taken today and i cant remember exactly but the numbers where arounf 116/63 apparently its lowered since i last had one. And i found somewhere on a site most people who suffer from MVP also have high blood pressure so would this mean it couldnt be whats going on or just that high blood pressure is a possibility?
if you do have the tumour what will they do for you?
And could that be whats been making you feel this way?
The things is im not sure i think its anything to do with my ear because although that would make sense for the dizziness it doesnt account for the headakes, Breathing problems, palpitation, Numbness &tingling, chest pains...i dont see how that could be caused by my ears which is what i kept saying to my doctor at the beginning.
I did have an echocardiogram done before i wore the 7day holter but i never saw the results and they ever told me ANYTHING about them what so ever.
Even if its not whats going on with me i really feel that my doctor should be taking me more seriously about the suggestions ive been making as they fit everything im feeling (the Dysautonomia or MVP) but he just wrote it off so maybe i should get another doctors second opinion on that? And maybe try and get hold of copies of my echocardiogram results?
I had my blood pressure taken today and i cant remember exactly but the numbers where arounf 116/63 apparently its lowered since i last had one. And i found somewhere on a site most people who suffer from MVP also have high blood pressure so would this mean it couldnt be whats going on or just that high blood pressure is a possibility?
if you do have the tumour what will they do for you?
And could that be whats been making you feel this way?
It is possible that you have more than one problem going on. So, I wouldn't give up on the ear angle causing the off balance feeling and would pursue getting special vestibular testing from an ear, nose and throat doctor to check it out. Because from your description, it sounded to me like you are always scared you are going to fall over, even if you don't hit your head. So, didn't you have that feeling before you got the concussion? If so, you've got to communicate that to your doctor and ask for a referral.
Dysautonomia is a difficult area for doctors and I've read they tend to just try to manage whatever symptoms of it a patient is suffering from at the time. They really weren't able to do much of anything for my own case.
I know it's confusing with the initials, but I know you had a holter monitor- which involves ECG or EKG tracking- that's electrocardiogram. Not the same thing as echocardiogram, which uses an ultrasound machine to look at the valves and if they are all functioning properly (including mitral valve). Have you had that done?
Regarding mitral valve and high blood pressure, that list of symptoms possible that I posted above doesn't mention high blood pressure, so I don't think you have to have it to have a problem with the mitral heart valve. One of the sites says most people have no symptoms, the other site says symptoms can vary widely from one person to another.
I doubt a tumor is causing my dysautonomia symptoms. If I have one on the adrenal, a rarity, it's possible that might be a culprit, but it is highly unlikely I have a pheochromocytoma. The alledged microadenoma (very small tumor) on the small pea sized pituitary is supposed to be followed up by MRI to see if it grows.
Keep on trying! I know it can be discouraging, and if the doctor isn't listening, see if you can't find a better one. Let me know what happens next!
Dysautonomia is a difficult area for doctors and I've read they tend to just try to manage whatever symptoms of it a patient is suffering from at the time. They really weren't able to do much of anything for my own case.
I know it's confusing with the initials, but I know you had a holter monitor- which involves ECG or EKG tracking- that's electrocardiogram. Not the same thing as echocardiogram, which uses an ultrasound machine to look at the valves and if they are all functioning properly (including mitral valve). Have you had that done?
Regarding mitral valve and high blood pressure, that list of symptoms possible that I posted above doesn't mention high blood pressure, so I don't think you have to have it to have a problem with the mitral heart valve. One of the sites says most people have no symptoms, the other site says symptoms can vary widely from one person to another.
I doubt a tumor is causing my dysautonomia symptoms. If I have one on the adrenal, a rarity, it's possible that might be a culprit, but it is highly unlikely I have a pheochromocytoma. The alledged microadenoma (very small tumor) on the small pea sized pituitary is supposed to be followed up by MRI to see if it grows.
Keep on trying! I know it can be discouraging, and if the doctor isn't listening, see if you can't find a better one. Let me know what happens next!
Thanks, My doctor doesnt seem to like referring me to places for some reason maybe he thinks its a waste of time? im not sure though.
Also yes i had an echocardiogram (Like an ultra sound on my chest) just beore they fitted the holter. But like i said i never heard anything back from them at all about the results.
Yeah im going to keep trying with this, theres not alot else i can do! Your right it is discouraging but i must say its been a big help since youve been posting. To know theres someone out there who belive im feeling this and has been through it all helps so much.
I hope they find out whats going on with your head anyway and fingers crossed there isnt any kind o tumour causing you problems.
Thanks so much for all your help!
Also yes i had an echocardiogram (Like an ultra sound on my chest) just beore they fitted the holter. But like i said i never heard anything back from them at all about the results.
Yeah im going to keep trying with this, theres not alot else i can do! Your right it is discouraging but i must say its been a big help since youve been posting. To know theres someone out there who belive im feeling this and has been through it all helps so much.
I hope they find out whats going on with your head anyway and fingers crossed there isnt any kind o tumour causing you problems.
Thanks so much for all your help!
I was looking at an insert to a medication that was brought home and saw something interesting about hyponatremia. If you had hyponatremia, which is low salt in the blood, it said signs and symptoms can be:
headache, difficulty concentrating, memory impairment, confusion, weakness, and unsteadiness which may lead to falls.
I wonder if they tested your sodium level in your blood (it would be done with an electrolyte panel).
I have normal blood salt, but after the diagnosis of P.O.T.S., I've had cardiologists encouarage me to eat more salt. They don't say how much and once, I think I had too much sodium and got a migraine. I had that 24 hour urine test for sodium, because I asked for it and my result seemed to me to fall right in line with being hypovolemic from what I could tell from an article I was looking at.
headache, difficulty concentrating, memory impairment, confusion, weakness, and unsteadiness which may lead to falls.
I wonder if they tested your sodium level in your blood (it would be done with an electrolyte panel).
I have normal blood salt, but after the diagnosis of P.O.T.S., I've had cardiologists encouarage me to eat more salt. They don't say how much and once, I think I had too much sodium and got a migraine. I had that 24 hour urine test for sodium, because I asked for it and my result seemed to me to fall right in line with being hypovolemic from what I could tell from an article I was looking at.
No im sure they havent tested my sodium levels, its definately an interesting thought...i do have quite alot o salt in my diet but you never know whats enough do you so it might be worth mentioning and see what my doctor thinks!
I only saw a crdiologist once and he said the holter was fine and that i should stop smoking and cut out all caffiene from my diet which i said is fine but not that easy as ive been smoking for so many years. and he said to me normally in young people breathing problems have nothing to do with smoking or caffiene so if you cut it all out for a month and still experience it then come back to me and we'll do some tests coz its likely its something else....
I understand that his job is to tell people to look after themselves but whenever i try to quit smoking or cutting out all caffeine i feel worse! Im so tired all the time from not sleeping because of the way i feel without it i feel terrible so im not sure what to do. Because it seems the only way i can get anywhere is if the cardiologist did some tests (like tilt table) to try and find something that other doctors havent been looking for.
..Its very frustrating knowing that i might know whats causing all of this and the doctors not listening to me!
So if you fall right in line with the salt diet does that mean you have to be treted as if it was too low or normal?
I only saw a crdiologist once and he said the holter was fine and that i should stop smoking and cut out all caffiene from my diet which i said is fine but not that easy as ive been smoking for so many years. and he said to me normally in young people breathing problems have nothing to do with smoking or caffiene so if you cut it all out for a month and still experience it then come back to me and we'll do some tests coz its likely its something else....
I understand that his job is to tell people to look after themselves but whenever i try to quit smoking or cutting out all caffeine i feel worse! Im so tired all the time from not sleeping because of the way i feel without it i feel terrible so im not sure what to do. Because it seems the only way i can get anywhere is if the cardiologist did some tests (like tilt table) to try and find something that other doctors havent been looking for.
..Its very frustrating knowing that i might know whats causing all of this and the doctors not listening to me!
So if you fall right in line with the salt diet does that mean you have to be treted as if it was too low or normal?
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