Who has autonomic dysfunction?

[Sushi]

I'm not even diagnosed yet.. it is just another theory.

You could try the poor man's tilt table test to see if it looks like POTS.

 

[Kenjie]

@Kenjie The following explanation is theoretical, but if indeed your autonomic system is not functioning properly it makes sense to me that your neuro-immune/neuro-protective functions are not working properly. So dysregulation could result in problems with the following systems that are autonomically regulated:
Digestive: nausea, reflux
Immune: histamine, mast cell issues (chronic nasal congestion), poor immunity to every bug out there
Sensation: Unusual sensations, numbness, tingling, etc...
Energy production/Mitochondrial: Fatigue
Motor Planning: Weakness, lack of coordination
Hearing: Ringing in the ears, unusual sounds
Circadian functions: poor sleep patterns, cycles
Pain response: Direct, unusual, widespread pain and/or migraines
Temperature: Hot flashes, shivers, intolerance to hot or to cold or both
Perspiration: Excessive sweating
Heart Rate: Tachycardia (high heart rate)
Blood Pressure: Hypertension
Respiration: Hyperventilate
Cognitive functions: Brain Fog, Word finding problems

The problem is each and everyone of these problems can also be caused by something other than autonomic dysregulation. By all means get any and all of those checked out! My thought though would be if someone is experiencing many or most of these, then the problem is most likely systemic. If no significant findings are found that relate to serious acute pathology, then a central regulatory dysfunction is probably at play which leads right back to autonomic dysregulation. We can attempt to treat all of the issues listed above individually, but the whole package will not improve (I believe) until we can get to the core issue of what is causing the autonomic dysregulation. That is why autonomic issues and ME are so hard to treat.

That's what I'd really like... to get to the root cause...!

I wish tomorrow I'd see the ENT and he'd say Woohay it's Been your sinuses this whole time Or goodness you've still had a touch of strep all this time...

 

[TigerLilea]

So I just stay home with slow heart rate one moment and racy the next?

I was under the impression that you had already had all of these issues checked out and that you were considering going to the ER more out of frustration, rather than a medical emergency.

 

[Kenjie]

I was under the impression that you had already had all of these issues checked out and that you were considering going to the ER more out of frustration, rather than a medical emergency.

I've been to 3 doctors, ent, neuro, an ambulance call out, one hospital visit ...

Yet I keep being sent home. Sure I might be frustrated but I need the right care and treatment... I need a diagnosis and maybe even get to root cause first.

Sadly haven't gotten any answers and have paid out hundreds for piddles!

Still searching for answers. If I went to er it is because I'm still experiencing awful symptoms such as erratic heart rate up and down which is concerning. Not just out of sheer frustration.

SO I don't go.. and keep getting 24 hour dizzy lighthead spells and the rest and I just wait til I finally do keel over.. yup that be real fun.. so far it's been 'fun' for 5 mths..

I'll keep paying money til I have the right answers. My health is important just like anyone's and I refuse to give up.

 

[anciendaze]

@Kenjie,

I admire your spirit!

A question about that heart rate: are you still taking the beta-blockers, and at the same doses?

If so, as the low heart rate you mention suggests, and still with episodes of tachycardia, it sounds like something is definitely wrong with regulation of your heart rate. Beta blockers should be regulating that, and if this is not happening something more needs to be found to explain the problem. This is not a situation where randomly treating symptoms with a "bigger hammer" is appropriate. Here's an online reference listing the dangerous possibilities. You need not have any of these, but the worst have to be explicitly ruled out.

 

[Kenjie]

I found out something interesting today that no doctor pointed out to me when the bloods were done on April 10...

I'm on thyroxine for my hypothyroidism... and I asked for copy of those Bloof results and picked them up yesterday...I've been looking at them AND I see I am in the HIGH range of anti thyroglobulin aka thyroid antibodies....

I'm up at 332 iu/ml ...normal range I searched in Google is less than 116 iu/ml.

Could this high range of antibodies be making me sick or a hugely contributing factor?

 

[Kenjie]

I also saw a doctor today about my heart who just suggested anxiety is making the issue worse and sent me home said to come back see my doctor on Monday and suggested i stop the metoprolol for now til I see my doctor. But the one I saw today in his place said he saw no reason to be concerned or alarmed and doesn't think I'll die in the next 3 days... where have I heard that before.. oh that's right the hospital!

So I want to see my doctor Monday morning.. I have made an appointment.. I'm thinking ask for some urgent referrals to cardiologist... and also mri to check the sinuses properly! And possibly and endocrinologist re the antibody HiPhone levels. I already asked on Friday via leaving a note for him at reception but I'm gonna try my best to ensure it happens ... hopefully!

I'm tired of continuously being sent home. .. I am ill!

 

[Kenjie]

Very tired today too after waking 3 timessage last night to racy heart adrenalin shock type feeling..

Awful fatigue today it is rather exhausting.

 

[anciendaze]

@Kenjie

That says you do have evidence of an autoimmune disorder attacking thyroid. You need to be screened for other immunological/endocrine abnormalities. It is possible you only have antibodies to thyroid, which are not uncommon. However, more often than not, patients with a range of symptoms show multiple autoantibodies attacking organ systems which are otherwise unrelated. It can take several years for standard clinical signs of autoimmune disease to manifest, and what you show so far is not out of line for the early stages of such.

Not every patient with the early signs goes on to develop a full clinical disease, and many people who have these signs after a physiological stress like infection or pregnancy do have their symptoms resolve. Much medical practice amounts to hoping nature will take care of the problem without medical intervention beyond temporary symptomatic relief. It sounds to me like your body has had years to recover from those initial stressors, and is now showing that wishful thinking is not sufficient.

 

[Kenjie]

@Kenjie

That says you do have evidence of an autoimmune disorder attacking thyroid. You need to be screened for other immunological/endocrine abnormalities. It is possible you only have antibodies to thyroid, which are not uncommon. However, more often than not, patients with a range of symptoms show multiple autoantibodies attacking organ systems which are otherwise unrelated. It can take several years for standard clinical signs of autoimmune disease to manifest, and what you show so far is not out of line for the early stages of such.

Not every patient with the early signs goes on to develop a full clinical disease, and many people who have these signs after a physiological stress like infection or pregnancy do have their symptoms resolve. Much medical practice amounts to hoping nature will take care of the problem without medical intervention beyond temporary symptomatic relief. It sounds to me like your body has had years to recover from those initial stressors, and is now showing that wishful thinking is not sufficient.

5.5 yrs since my thyroid came under active. . That's when I had my son.

Does this mean that my thyroid medication is no longer fully doing its job?

 

[gerard5]

5.5 yrs since my thyroid came under active. . That's when I had my son.

Does this mean that my thyroid medication is no longer fully doing its job?

Your thyroid med is there for a reason and when you have High Antihyroglobulin it may indicate that your release of Thyroid is being slowed down (healthline.com) so that you may be symptomatic as a result. Your Medical care appears to be heading in progressive direction that may be away from autoimmunity in ME/CFS by this information here; http://www.healthline.com/health-ne...rain-fog-in-chronic-fatigue-syndrome-033115#2

 

[CFS_for_19_years]

I've been looking at them AND I see I am in the HIGH range of anti thyroglobulin aka thyroid antibodies....

I'm up at 332 iu/ml ...normal range I searched in Google is less than 116 iu/ml.

Could this high range of antibodies be making me sick or a hugely contributing factor?

When determining a normal range, don't rely on Google. Look instead at the range stated in your lab results because they will be based on the technique used by your laboratory. What was your laboratory's normal range from your lab results?

 

[Kenjie]

Your thyroid med is there for a reason and when you have High Antihyroglobulin it may indicate that your release of Thyroid is being slowed down (healthline.com) so that you may be symptomatic as a result. Your Medical care appears to be heading in progressive direction that may be away from autoimmunity in ME/CFS by this information here; http://www.healthline.com/health-ne...rain-fog-in-chronic-fatigue-syndrome-033115#2

I don't have the chronic fatigue this time though lol. Normal function In that regard.. although been getting very tired lately due to the very tiring other symptoms

 

[anciendaze]

@Kenjie,

Your thyroid medication may be like pouring water in a leaky bucket. Your doctor needs to find out if there is progressive damage to your endocrine system, including your thyroid. Some of your symptoms are similar to thyroid problems, others are not. Five years is past the point where I would expect problems caused by the stresses of pregnancy and childbirth to resolve naturally.

I am particularly concerned about evidence that your tachycardia is not being controlled by the beta blockers, even though you sometimes show rates near the bottom of an acceptable range. This causes me to wonder if you are having episodic arrhythmia due to an unknown cause. One fairly common possibility is atrial fibrillation. This kind of thing should be checked with a 24-hour Holter monitor. Episodic misbehavior of the heart is not convenient to check in a clinic, but it can result in patients becoming episodically dead. Mean values generally do not kill people, but extremes may.

You need to understand that doctors are trained to look for convenient clinical signs for which they have useful interventions. At present your problems do not produce these during the limited time when you are with medical personnel. A second factor is my own observation that "doctors treat generic patients." Advice that works for 95% of patients is considered rock solid. The problem is that the final 5% contains millions of people who are difficult to treat properly under current conditions, prior to some kind of organ damage that is hard to reverse, but produces undeniable clinical signs.

You present a difficult diagnostic challenge, and referring you to specialists is unlikely to change this, because at this point none of us know what common thread is causing all the distinct problems, and we don't know which specialist you need. You need a doctor who is well versed in many fields of medicine to go through the case history carefully and pull out the details which represent real clues. One seldom finds G.P./P.C.P.s with these talents. Even in a major medical center such individuals are rare, and are protected from the wide range of "crazy" patients who would waste their valuable time.

An example of the kind of doctor I'm thinking about is Dr. Lawrence Afrin, who wrote Never Bet Against Occam. His specialization is hematology/oncology, but he realized over a period of years that many patients referred to him because they might have an undetected problem with their blood actually had a condition involving overactive mast cells. This doesn't mean that I am diagnosing you remotely as having MCAS/MCAD, it just means you need someone skillful to untangle the diagnostic mess. One of his successfully-treated patients lived in New Zealand, and there may be a lead there to an expert in the country.

You also need to realize that there are plenty of patients who are fairly "crazy", by ordinary standards, if not psychiatric ones. Many of these make false attributions of causes of their discomfort and the motivation behind medical behavior. (A friend, who is unusually sane, just went through an exercise in checking for painful problems with his teeth. It turned out the problem was actually in the sinus just above those teeth. He didn't even know he had a sinus there.) In an extreme case these can become paranoid schizophrenics, which are a kind of nightmare for anyone who deals with them, not just medical personnel, but also family.

Even seriously "crazy" people can have real organic illness, and my rule of thumb is that about 10% of patients who are locked up in institutions will have undiagnosed physiological problems. If we had better medical technology, I think the percentage would prove to be even higher. Sometimes treating these problems results in a return to sanity, but this is rare. We simply have no idea how many could have been treated right at onset without ever becoming long-term psychiatric patients.

My advice to you is to do your best to avoid being mistaken for such a "crazy" patient. Do your best to present yourself as someone dealing rationally with a confusing problem that is disrupting your life to the extent that you fear becoming long-term disabled.

 

[Kenjie]

@Kenjie,

Your thyroid medication may be like pouring water in a leaky bucket. Your doctor needs to find out if there is progressive damage to your endocrine system, including your thyroid. Some of your symptoms are similar to thyroid problems, others are not. Five years is past the point where I would expect problems caused by the stresses of pregnancy and childbirth to resolve naturally.

I am particularly concerned about evidence that your tachycardia is not being controlled by the beta blockers, even though you sometimes show rates near the bottom of an acceptable range. This causes me to wonder if you are having episodic arrhythmia due to an unknown cause. One fairly common possibility is atrial fibrillation. This kind of thing should be checked with a 24-hour Holter monitor. Episodic misbehavior of the heart is not convenient to check in a clinic, but it can result in patients becoming episodically dead. Mean values generally do not kill people, but extremes may.

You need to understand that doctors are trained to look for convenient clinical signs for which they have useful interventions. At present your problems do not produce these during the limited time when you are with medical personnel. A second factor is my own observation that "doctors treat generic patients." Advice that works for 95% of patients is considered rock solid. The problem is that the final 5% contains millions of people who are difficult to treat properly under current conditions, prior to some kind of organ damage that is hard to reverse, but produces undeniable clinical signs.

You present a difficult diagnostic challenge, and referring you to specialists is unlikely to change this, because at this point none of us know what common thread is causing all the distinct problems, and we don't know which specialist you need. You need a doctor who is well versed in many fields of medicine to go through the case history carefully and pull out the details which represent real clues. One seldom finds G.P./P.C.P.s with these talents. Even in a major medical center such individuals are rare, and are protected from the wide range of "crazy" patients who would waste their valuable time.

An example of the kind of doctor I'm thinking about is Dr. Lawrence Afrin, who wrote Never Bet Against Occam. His specialization is hematology/oncology, but he realized over a period of years that many patients referred to him because they might have an undetected problem with their blood actually had a condition involving overactive mast cells. This doesn't mean that I am diagnosing you remotely as having MCAS/MCAD, it just means you need someone skillful to untangle the diagnostic mess. One of his successfully-treated patients lived in New Zealand, and there may be a lead there to an expert in the country.

You also need to realize that there are plenty of patients who are fairly "crazy", by ordinary standards, if not psychiatric ones. Many of these make false attributions of causes of their discomfort and the motivation behind medical behavior. (A friend, who is unusually sane, just went through an exercise in checking for painful problems with his teeth. It turned out the problem was actually in the sinus just above those teeth. He didn't even know he had a sinus there.) In an extreme case these can become paranoid schizophrenics, which are a kind of nightmare for anyone who deals with them, not just medical personnel, but also family.

Even seriously "crazy" people can have real organic illness, and my rule of thumb is that about 10% of patients who are locked up in institutions will have undiagnosed physiological problems. If we had better medical technology, I think the percentage would prove to be even higher. Sometimes treating these problems results in a return to sanity, but this is rare. We simply have no idea how many could have been treated right at onset without ever becoming long-term psychiatric patients.

My advice to you is to do your best to avoid being mistaken for such a "crazy" patient. Do your best to present yourself as someone dealing rationally with a confusing problem that is disrupting your life to the extent that you fear becoming long-term disabled.

On point. Yes I've been teary eyed in front of doctors. And doctors have said I appear to have high level of anxiety. Easy for them to pawn it off as anxiety. In all honesty it is out of sheer frustration that I get upset. But after I tried to see a doctor on Saturday who thought I should be treated for anxiety I have decided to compose myself.

I still wish to persist in pursueing for medical answers to my problem. No I don't want to be misdiagnosed or come under the crazy category.

This new doctor I have so believed the beta blockers would make me better but now i dont believe so. Will be interesting today when I see him and mention I do not feel that is the answer. I saw him a week ago and he was saying give the beta blockers time.. I really just want to say no thank you and organise some refferals even if privately at my expense. The sooner I'm seen by specialists the better. I don't feel the road to recovery and improving my current state of health is through the doctors.

I've lost track of how many doctors consultations I've had and realised it is pointless continuing there unless for refferals.

I don't play Russian Roulette with my health although it seems doctors do. I take my health very seriously.

It is preventing me from working and living a normal daily life.

Also In my list of needed refferals I believe is a full mri... not justo a CT scan... I want to check my sinuses eg head and nose pressure and headaches.

I read that even if there is no sign of infection that symptoms can still happen and that sinus can become so inflamed that it can potentially move into the tissue. I've also read about polyps and other sinus issues.

I feel like I know what needs to be done now and who I need to see.. Wjether or not the doctor takes me seriously on my request for refferals is another thing...

Although if he doesn't. .. I will keep on changing doctors and keep on asking til someone finally does.

Even if I have to walk into a hospital again I'll keep on trying til someone helps me when it gets bad enough or worse again..

But you'd think my heart would be enough for them to take me seriously... as well as the feeling unbalanced when walking.

Tall about taking matters into my own hands where doctors fail. I've seen on the boards that most of us have had to do this.

I feel I must get to root cause. Masking the symptoms without a diagnosis is certainly not the answer.

 

[gerard5]

I don't have the chronic fatigue this time though lol. Normal function In that regard.. although been getting very tired lately due to the very tiring other symptoms

anciendaze is right about your Tachycardia being a concern. I like your plan to see the Cardiologist and the Endocrinologist. When your Cardiovascular system is not right, I know that can be very tiring. These two appointments are like a new point of reference for you to begin making a lot of headway in breaking down the big nebulous mass of all kinds of symptoms. It should be a lot less overwhelming after those are settled. Keep your chin up then.

 

[gerard5]

On point. Yes I've been teary eyed in front of doctors. And doctors have said I appear to have high level of anxiety. Easy for them to pawn it off as anxiety. In all honesty it is out of sheer frustration that I get upset. But after I tried to see a doctor on Saturday who thought I should be treated for anxiety I have decided to compose myself.

I still wish to persist in pursueing for medical answers to my problem. No I don't want to be misdiagnosed or come under the crazy category.

This new doctor I have so believed the beta blockers would make me better but now i dont believe so. Will be interesting today when I see him and mention I do not feel that is the answer. I saw him a week ago and he was saying give the beta blockers time.. I really just want to say no thank you and organise some refferals even if privately at my expense. The sooner I'm seen by specialists the better. I don't feel the road to recovery and improving my current state of health is through the doctors.

I've lost track of how many doctors consultations I've had and realised it is pointless continuing there unless for refferals.

I don't play Russian Roulette with my health although it seems doctors do. I take my health very seriously.

It is preventing me from working and living a normal daily life.

Also In my list of needed refferals I believe is a full mri... not justo a CT scan... I want to check my sinuses eg head and nose pressure and headaches.

I read that even if there is no sign of infection that symptoms can still happen and that sinus can become so inflamed that it can potentially move into the tissue. I've also read about polyps and other sinus issues.

I feel like I know what needs to be done now and who I need to see.. Wjether or not the doctor takes me seriously on my request for refferals is another thing...

Although if he doesn't. .. I will keep on changing doctors and keep on asking til someone finally does.

Even if I have to walk into a hospital again I'll keep on trying til someone helps me when it gets bad enough or worse again..

But you'd think my heart would be enough for them to take me seriously... as well as the feeling unbalanced when walking.

Tall about taking matters into my own hands where doctors fail. I've seen on the boards that most of us have had to do this.

I feel I must get to root cause. Masking the symptoms without a diagnosis is certainly not the answer.

Kenjie, I've had a lot of these symptoms also but there are differences with Thyroid involvement. I will do what I can to provide you with helpful information and I have to go for now.

Going to a Dr for anxiety and receiving a drug for that seems scary to me. Please know that there are natural and gentle remedies for that that have been know not to be addictive and are effective. Anxiety may be more situational by nature also. If so then meditation or relaxation therapy may be the key.

I plan on being back to share but I need to exit for now. Please try to calm down, sounds like your excited and I know you are frustrated, ok?

 

[Kenjie]

Kenjie, I've had a lot of these symptoms also but there are differences with Thyroid involvement. I will do what I can to provide you with helpful information and I have to go for now.

Going to a Dr for anxiety and receiving a drug for that seems scary to me. Please know that there are natural and gentle remedies for that that have been know not to be addictive and are effective. Anxiety may be more situational by nature also. If so then meditation or relaxation therapy may be the key.

I plan on being back to share but I need to exit for now. Please try to calm down, sounds like your excited and I know you are frustrated, ok?

Not 100% happy...

Saw the doctor today. I informed him I was more relaxed and that I felt I know what I needed to do now.

He saw no need to see endocrinologist in regards to my High antibodies telling me matter of factly 'but your thyroid levels are normal'.. I said I've read that even with normal tsh levels that antibodies can still cause symptoms and he still saw no point seeing an endocrinologist.

I informed him I will be seeing an ent and an ophthalmologist by my own choice and cost. To check the enlarged blood vessels in my eyes and to check sinuses re pressure and headaches in forehead and sinuses. I mentioned my left eye went funny back in December when all this started. I don't think he was really listening.

I said sinuses has been a previous issue also but that if there is no sign of infection that I may still have inflammation and that inflammation can still play a role in symptoms. (I know from experience).

He wrote up on the computer in regards to Friday night racy heart waking me up 'seems like panic attack'... but no mention of that I was initially asleep when we are most relaxed.

He has sent on a referral to a 'physician'.. who exactly I don't know.... better not be a psych though...

He was trying to blame anxiety.. so I said.. you may be the doctor but unfortunately I know my body well... then I said ... i appreciate your help but I don't agree that it is solely anxiety causing me to be chronically unwell... I said in understand where being physically unwell can cause anxiety fair enough.. but stated I'm not anxious for no reason and that if I can find the cause of my ailment I know for a fact anxiety will go away. I mentioned I know what it's like to have anxiety for no reason at all as I did in my early 20s. I am 35 now.

I wasn't happy with his consult entirely but I've chosen to remain calm. He reckoned that you cannot choose not to be anxious. Actually I believe you can. I am choosing not to get upset or anxious. Doesn't mean the symptoms will go away.. just means I will be calm in my approach.

He made it appear to be anxiety in his brief written notes!

So I also said to him... I don't want to be seen as a crazy person.. I just know something is out of balance in my body and that i wish you could be in my shoes to know exactly what I mean.

I was feeling rather confident and straight up lol.

 

[Kenjie]

Next part.. I mentioned I would like to be reffered on for mri to get a second opinion on my sinuses.. I said to him that my CT scan couple months ago showed 'debri' which is mucous but that at the time didn't appear to be infection.. I said I just wish to be thorough and find answers before trying any treatment again.

He said he didn't want to send me on to several people at once as he didn't know the problem so didn't know who I should see.. just that he would refer me to a psysician as quickest route and then take it from there.

He said he didn't want me to come up with so many theories of what might be wrong.... I said No I only want to focus on current issues that have also been previous ailmen's...

I am adamant that it is NOT anxiety! Doctors only look at their standard tests and never seem to want to look outside the box..

I know my body... I know something is making me ill... because I know for a fact when I am physically well I do not get anxiety. My body is reacting to something that isn't right.

Doctors make you look like a hyperchondrIac and wonder why we go to.the doctor so much... whereas it's actually where they fail to diagnose yet the miscommunication is put into patients instead and assume we are the one with an other than physical problem.

I am ill. I know my body. So I said to the doctor. .. if i figure out what is wrong then I can start to improve!

Not sure where to from here. But i certainly won't be back to him or any doctor who immediately assumes it's purely and solely anxiety.

 

[Kenjie]

So moral of today's story.. today at the doctor not what I was hoping for. I was hoping he would be more open minded to my requests. He said no to every thing and only reffered me to a physician at the hospital.

I don't feel this really helps. I requested mri.. and endocrinologist .. didn't ask for anything else. That would have been a good outcome.

I don't think doctors know or are aware when they are wrong. I feel they always believe they are right.