It sounds to me like you might need a change in nephrologists, since none of them addressed your concern of being tired so much.
I might also suggest you make sure you aren't suffering from iron deficiency anemia or the anemia that can go with kidney issues (low RBCs). Iron deficiency anemia can make you feel tired and cause palpitations. Having P.O.T.S. like you or I do, it can make things worse. Ferritin and iron saturation percentage besides blood iron level might be things to ask your PCP to please test for you, along with a vitamin B 12 level and thyroid function if they haven't checked up on those things- if B 12 is low or thyroid is sluggish, those things also can make you tired. Metoprolol has tiredness as a possible side effect- did you notice a worsening of the tiredness after starting the medication?
Stopping exercise can actually make you more tired and lower your endurance. I walk leisurely about the house for exercise myself again lately, trying to get in about a half hour a day of that. You might try something like Naturemade brand of Sam-E to see if that gives you a boost in how you feel.
Regarding the electrophysiologist- since you've had a tilt table already and if your holtor showed no problems other than the sinus tachycardia, I'd say stick with the cardiologist you like already- it's always nice to like your doctor! And that he had you checked, I take it, a defect in your coronary artery sounds like the mark of a careful doctor.
Have they ruled out pheochromocytoma with a fasting plasma free metanephrines test? If not, you might ask your primary care doctor if you should get that checked, as if you had that kind of rare tumor, they can emit high amounts of catecholamines and get a person's heart rate up.
With the drop in blood pressure you had on your stress test, if you frequently have very low blood pressure which I would guess you might with your syncope history, you might also try to get Addison's disease ruled out as well.
Have you ever had an MRA/MRV type of MRI scan of your brain to check for signs of any trans-ischemic damage from all your fainting spells? You might talk to a neurologist about that and your tiredness.
Some people who faint who post on this board talk about things like getting IV fluids, compression hosiery, and helmets to try to protect from possible concussion injuries.
Thank you, thank you, thank you for such a thorough response.
I have had more blood tests than I could count, however, I couldn't tell you specifically what types of tests I've had to look at my iron .. I'm going to dig out some records and check that out!
As for the metoprolol, I am starting to feel better when I take it - if I'm late on a dose I definitely can tell - suddenly I'm very aware of my heart beat again. However, in the first few weeks I felt horrible! There were a lot of naps haha. I think I'm still more tired than a usual person, I drive my high-energy boyfriend crazy sometimes .. but the fact that I don't always feel my heart pounding is taking a stress off.
I used to love working out, as a teen I competed in gymnastics and cheerleading and still went to the gym on top of that .. but now I can't bring myself to walk on the treadmill. I would like to go use a seated stationary bike, I feel like sitting and moving would be helpful? But standing just gets me really lightheaded at times.
I had never heard of pheochromocytoma, however, I looked it up and it said diagnosis could be done via abdominal CT. I have had many CT scans for my kidneys and this hasn't been brought up .. would it be possible for it to not show via CT?
What's really bothering me still is that stress test. They initiated the stress test with the objective to make me feel safe working out - since many of my pre-syncope symptoms are the same as normal feelings when working out. Instead I nearly passed out 9 minutes in, and was immediately made to lay down by my cardiologist. He then told me no exercise right now, but prior to my cardiac cath said we will just try the metoprolol and see how it goes .. I feel like we're missing something. Generally drop in BP=heart disease ... argh.
No one has ever mentioned needing an MRI, but I think that's because I never hit my head (that I know of) .. Last time I grabbed a hand rail along the wall and must have fell back and slid down it to the ground. I didn't realize I needed to worry about TI damage.
The frequency of my syncope could never warrant a helmet. I'm trying to be more conscious of my symptoms so I can just SIT DOWN versus trying to fight it. I'm realizing now that I LOSE the fight to stay conscious! Lol.
However, I feel like compression hosiery could help at times I'm on my feet for long periods of time. (Oh my, I didn't think I would be wearing compression stockings or dangling my feet over the edge of the bed before getting up at this age ... )
You're quite welcome!
A number of people who have posted on this dysautonomia forum pass out. A certain percentage of those with P.O.T.S. faint and there are others with N.C.S. who faint as well. It must be really hard on you to go from being very physically active to doing so little exercise.
Re: the stationary bike- when I still had one before I moved to another state, at times, I would lay on the carpet and use the pedals of mine. It was not a recumbant bike... if you could get a recumbant bike, that could help you burn calories, raise your endorphines level which could help you feel better, and strengthen your legs.
Re: pheochromocytoma- I believe sometimes they can be quite small and the adrenals sit on top of the kidneys, so if their primary focus was the kidneys, I think it's possible something on the adrenal glands could be missed (rarely this type of tumor is found somewhere other than on an adrenal gland). I think it's not a bad idea to try to get this ruled out in patients with P.O.T.S. if they are having spikes in their blood pressure at times as well as tachycardia.
Plasma free metanephrines blood testing (fasting test) is actually a great tool to rule out that rare tumor, as it measures the inactive metabolites of catecholamines and is supposed to have a high level of accuracy for deciding if you don't have one. It also doesn't require you to collect your urine for 24 hours like the urine metanephrines test does.
Did you also look up Addison's disease which I mentioned? It can cause very low blood pressure to happen. Have you had your cortisol levels measured?
The heart starts to race to try to keep you from passing out with P.O.T.S., but in some people it evidently doesn't always prevent it. I had an angiogram with chest pain and an abnormal nuclear medicine test, but it turned out the doctor said my arteries were pristine, like a teenager's (I was in my early thirties at the time).
Did you find if you had your ferritin and blood iron levels tested? Once, I had a normal CBC (complete blood count) but my iron was low and I was feeling tired and I think my P.O.T.S. symptoms were exacerbated because of the low iron. It is very common in menstruating females, I was told by a doctor, to have iron deficiency. Also, because of the issue with the kidneys making erythropoietin, a hormone involved in the production of red blood cells, did you find if your red blood cells (RBCs) were in normal range? Have they tested your thyroid function?
I'm glad you are finding benefit from the medication you are taking and that you seem to have adjusted to it. If your boyfriend is worth his salt and really loves you, he will put you ahead of himself and care about you enough to slow down and take time to enjoy your company doing things at a less frenzied pace than your average young adult. He might find his relationship becomes deeper and more special at that slower pace of life.
I'm surprised with your faints they never considered an MRI with and without contrast to try to rule out anything serious going on in the brain area- but, then I'm not a doctor, just think that would be something they might do.
Also, if you are having high triglycerides and/or high bad cholesterol readings, then being concerned about vascular disease is warranted. Getting doppler of your carotid arteries in such a case to make sure know clogging of vital blood supply to the brain might be something to ask for with an abnormal lipid panel.
And with their heart testing, did they do an echocardiogram to assess the function of your heart, take a look at the valves? I've had a few of those doctors have ordered.
Did they cover the whole heart with the cardiac cath or just look at one section? I don't think they looked at everything in my angiogram- perhaps they looked at the area that looked abnormal on my nuclear medicine test prior to that, I don't know or maybe they just saw enough to decide my arteries looked great!
It takes some getting more accustomed to life style changes with dysautonomia. Hopefully, the med you are on will continue to help you feel better!