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You could try the poor man's tilt table test to see if it looks like POTS.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.I'm not even diagnosed yet.. it is just another theory.
@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.
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.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
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?
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?
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 symptomsYour 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
@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.
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
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.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?