futurehope

I don't remember why (I think headache?), but I won't touch the stuff.

Potsgirl, Yikes!!!! So much for whether POTS can be more serious or not. I consider damage to organs pretty serious. I'm sorry to hear about your malfunctioning organs. Is your blood flow so poor that the doctors suspect hypoperfusion? Maybe some of us should be thinking along those lines as well? Take care.

I wonder if the increased sodium over time can cause other problems such as stones, or malfunctioning kidneys? Another question for the doctors.

Good point about kidney function. I wonder if doctors routinely test for kidney function before they suggest additional salt and water?

Thanks for the link. I just noticed the article references postural syncope. I wonder if the salt loading helps POTS as well? Flop, do you have POTS? Do you suffer syncope? Thanks.

Thanks Flop. I really appreciate the info. It makes more sense to me to test and see how well our bodies are using what we supplement with. I'm going to show my doc your info. I think it's wonderful that there is a study out there showing how much sodium we're supposed to see in the urine in order to get the best benefits. It makes way more sense to me than just plan guessing, KWIM?

You're proving my point. When doctors send home diabetics, they are continually testing themselves to see how their blood sugar is doing. With us, they send us home with recommendations of fluid loading and salt and they frequently do no testing to see how we are doing?! How many people on here inadvertently create another problem by pushing fluid and sodium? I know we cannot answer. But, I will bring this up with my doctor and ask him if there is some "test" whether formal or informal to see if a new problem arises (the ones you mentioned). Thanks for the info you posted.

Frequently I hear on this forum and also from doctors, to drink. We tend to be dehydrated. I know I am mildly hypovolemic because of a nuclear blood test used to determine that. The problem is, I can't see how that can be useful? We're hypovolemic because something ("our thermostat" or whatever) is malfunctioning. That's why we're thirsty much of the time. If that's the case, won't overloading with fluid just make us urinate more and make us potentially MORE hypovolemic than if we had not drunk to begin with? I'm saying this because our "fluid thermostat" is broken and no matter how much we drink, logically speaking, we do not hold on to it. We're malfunctioning. Now, if we fix the broken "fluid termostat" via some medication or taking the correct amount of salt and possibly taking fludrocort, maybe then we can hold onto fluid. See what I mean? I brought this up because many of us, me included, drink more fluid without using something extra to make our bodies hold onto it. And, potentially, we could be making ourselves more hypovolemic because the increased fluid intake makes us urinate more.

Worried Mom I appreciate you relaying the doctor's explanation of narrow pulse pressure. (Where was your son evaluated?) My pulse pressure narrows when the lower number climbs upon orthostasis, but sometimes the upper number is high as well. I do not feel well on beta blockers. I really appreciate seeing how varied we are because all these responses remind me that relying on heartrate to determine whether I'm HYPERthyroid is not a good idea.

POTS can be severely disabling. When your autonomic nervous system malfunctions, it has a far-reaching impact. As a matter of fact, one study showed us being as disabled as someone with chronic obstructive pulmonary disease. People do not realize the severity and impact of "not being able to be upright". We may or may not be in a wheelchair. Many are not. We are not walking around with supplemental oxygen, though maybe somebody on this forum is. There is nothing showing and no knowledge of the impact. We're blessed to have each other on this forum because we all can relate to feeling ill frequently. Anyhow, once in a great while, my husband gets tired, or my 84 year old mother gets severely tired, in which case I sometimes say, "I feel like that much if the time." Healthy people cannot relate to feeling poorly much of the time. They may feel poorly when they are sick with something, but it goes away. For us, it does not go away. I can honestly say that POTS has pushed me into feeling similarly to being an 84 year old. Isn't that incredible? And I'm 58 years old. Anyhow, my own experience and opinion is that only on rare occasions do I try to describe how disabled I am. It really serves no purpose to relay this because usually people do not understand and they don't want to hear it (for whatever reason). Also, I prefer to be in a good mood and to relate to people in that mode, but that's just me. Nobody really wants to hear of my difficulties unless it's someone who has a debilitating condition and needs someone who understands. Even then, I tend to hear them out without relaying my own daily struggles. But, that's just me. I have "come to terms" with this condition by realizing that my personal struggles have put me in a unique position of being more empathetic and understanding towards others in their time of need. And I try to use that perspective for the good of others. I prefer helping others emotionally if I am able, and "forgetting about myself" if I can. After all, even I do not really like to think about my disability. I prefer to think about my potential to help others.

Hi, Thanks for your numbers. Are you on beta blockers by ay chance? Some of your numbers are lower than I've ever seen in me. Also, I noticed the pulse pressure of your blood pressure readings is similar to mine. Pulse pressure is the difference between the two numbers. My body tends to have a difference of 34 between the two numbers. But I have narrowed pulse pressure sometimes. I always thought 40 pulse pressure was the ideal?

Wow! It seems near impossible to make heads or tails out of anything except that we are variable and our heartrates jump up or down and sitting or standing makes it go up. You all were very helpful. I realize that I have to be very careful when using my heartrate as an indicator of optimal synthroid levels as my heartrate is variable as well, and seldom in the "normal" range. Thanks a lot. I must say, though, that other than having POTS or dysautonomia, I am now aware that sub-optimal levels of thyroid hormone negatively impacts my life. I was literally a walking "dead person" who experienced mental dullness and extreme fatigue. I'm still fatigued, but it is different than what I experienced when hypothyroid. God bless you all!

I'm glad you brought up the idea of "depending on what phase I'm in". I am wondering whether we are different depending on "how poorly we're doing"? Like, for instance, we eat a dessert rich in carbohydrates, and then our heartrates climb higher than the normal? Or we "wore ourselves out" going to the doctor, so our heartrates are higher than normal? Or, we're having a stressful week, so our heartrates are higher than normal? The list goes on. I suppose we're really unpredictable when it comes to heartrate?

So true. I also noticed I could lower my heartrate by breathing out slowly, but it occurs only during exhaling. It seems to me that most of us have heartrate increases if we do ANYthing, even sitting. No wonder we are fatigued!

As some of you probably know, I'm tweaking my dose of synthroid as a replacement hormone for my removed thyroid. Obviously, we have POTS and our heartrates go up when standing. What I want to know is: What is your usual resting heartrate after reclining or after sleep? What happens to your heartrate after sitting for a few minutes? Does sitting affect your heartrate? Do you find in the course of a typical day that almost any motion sets off an increased heartrate? As an example, turning over in bed? Getting up to get something? Eating? (I'm not talking about deliberate exercise:I'm talking about normal everyday simple activites, things that affect POTS people but don't necessarily affect normal people.) By having dysautonomia, does that mean in general we have difficulty adjusting our heartrates to almost anything (including bending over) compared to normal people? I'm asking to help me judge what my increased synthroid dose is doing? Any insight as to your normal "POTsy" heartrate responses will help me judge. Thanks in advance.

I don't understand...why do you have to join a club to get test kits? Isn't that unnecessary overhead? Also, my doctor gave my saliva tests to do but this was before I realized I was hypothyroid. Therefore, I've held off doing them. The saliva tests I'm talking about are done through Quest.

On the one hand, I understand not wanting to add another diagnosis, but on the other hand, your response doesn't compute with what I've seen about you on this forum. What I mean is, you obviously have something malfunctioning because you are on this forum. You seem more interested than most in finding out exactly what the malfunctioning part is so you can fix it. If you had an opportunity to find out the cause of your POTS and have a potential fix, you, of all people, would seem to be the most interested. Of course I don't really know you. I'm commenting on what I've seen on here. Maybe Mestinon could "fix" several different malfunctining body systems in you, you know?

Oh my. I'm going through it myself right now with my increased synthroid. I feel more alert, awake, but I'm exhausted from my over 90 resting heartrate and I do NOT want to go back to feeling like a walking dead person like I was when I was hypo a few weeks back. Having POTS is definitely making this a challenge. We're in this together. It stinks. I know. I'm right with you.

Rama. Have you had the bloodwork done for detecting acetylcholine receptor antibodies (Achr antibodies)? I test positive for the MG antibodies, but luckily I have not experienced clinical presentation yet, though my neuro says fatigue comes with MG and I always have fatigue. He keeps his eye on me by retesting me clinically and checking my Achr antbodies about once/year.

Thanks, EM. The problem I have with "interviewing new docs" is they, by definition, spend 1 1/2 hours going over everything to do with your health history because they feel that is the only way they will get to know you. So they end up getting paid for an extended OV, when really I only want to interview them... It's tiring going through those long ov's. For those who care, I asked some questions of a second endocrinologist in my endo's practice about my high resting heartrates which have occurred since increasing my synthroid dose. He said to wait until it's 4 weeks to test. He won't do anything now (especially since my exercise heartrate is normal, I suppose). I asked him why my Free T4 was high even though my TSH was high? He didn't know but said I'm not the only one like this. The TSH meant the most to him because that is how my brain is responding to the hormone - whether my brain thinks I'm high or low. It's okay for me to go below 1.0 TSH according to him because of my history of thyroid cancer. If I'm between 1.5 - 2.5 I'm happy. I was up to 7.? TSH which could not have been helping my situation (HYPOthyroid that is)?! All for now. I'm off to live my POTsy life with more questions than answers...... What else is new?

I can understand your thinking. My thyroid was removed for cancer and the lower they could keep my TSH, the happier they were because they did not want the thyroid stimulating hormone to "stimulate" the cancer cells. So I've been kept relatively hyper for years. If you don't mind my asking, is your good PCP "outside the network" of insurance? Usually, when a doctor is outside the network and you pay them directly out of pocket, they spend more time with you. Do you consider your doctor a holistic practitioner? Is he/she publicized as a holistic practitioner? Thanks in advance. I believe that the doctors working for money paid from the insurers are much more "by the book" and unwilling to deviate from protocol. Also, they have a set amount of time allotted per patient and do not wish to deviate from that.

I'm starting to wonder about all this. For whatever reason (thanks Ramakentesh), our heartrates can change. Doctors realize how sensitive we are to getting tachycardia. They get nervous about increasing our thyroid dose because of this. I know my endocrinologist was so worried about the tachy that I had to talk him into increasing my synthroid by pointing out to him my TSH readings over the past ten years and that they had been between 1.? and 2.? I talked him into the higher dose because 1) my TSH was way out of range for me (7.?) 2) I was disgusted with feeling dead all the time 3) my weight was picking up rather rapidly. Okay, so the first thing I notice about the increased synthroid is that once I get out of bed (getting up in the AM is difficult), I actually feel alive and am able to think. Now, that's fun. Secondly, my heartrate is increased when sitting, though it can be anywhere from 77 to 97 depending on what my body feels like doing at the moment. So, like I said in my original post, I don't really want to "report" this increased heartrate to my doctor just yet because I enjoy "feeling like a human", more "with it" and maybe my sensitive body needs to adjust to the higher dose? It's been about three weeks. You know, it's not improbable that once I are getting the proper dosing of synthroid, that maybe I need a wee bit of adrenal hormone as well? Nobody seems to know how to treat me and doctors get nervous about "upsetting the applecart", so they would rather do nothing than potentially help me to feel better. I knew that the dead feeling I was experiencing, along with hair loss, weight gain, etc. was not right. It was a good thing I had all my notes from ten years back as to my thyroid test results. We are mysteries written inside an enigma - what I mean is, doctors would rather not touch us than create more problems. Too bad. I really feel that we could be feeling much better than we do if they only had the guts and resolve to improve our quality of life.

Do you happen to have POTS as well? I wondered because I have a few comments and questions. Comment: My TSH was 7.? I told my doctor that for years my usual was 1.? - 2.? This TSH of 7.? was despite my Free T4 being at the high end of normal?! I was constantly wiped out, unable to think, and basically feeling dead. The doctor listened to me and increased my dose from .112mg/day to .125 mg/day. I now feel more alive- yayyyy! The problem is, my resting heart rate is hovering in the 90's. Not good. I know us POTsys have a problem with tachycardia so I'm reluctant to mention this increased resting heartrate until at least 4 weeks have past since my dose increase. Do you have any idea what I should do, being as I feel much better but my heart is going too fast? I'd hate to retreat and go back on the downward spiral of losing hair. Thanks in advance.

Thanks for your ideas about weight and basal body temperature. I kinda thought that just observing heartrate in POTS people in not enough.

Hi, I'm in the middle of "tweeking" to take the right amount of thyroid hormone to keep me from getting hypothyroid. I do not have a thyroid and I need the hormone. What do you consider your normal resting heartrate when not sitting or vertical? Can POTS people use resting heart rate as an indicator of thyroid function since our heartrate tends to go up so easily? I guess I'm trying to understand if our resting heartrates are normal compared to normal people without POTS? Or are our resting heartrates usually high? Thanks in advance.