I am trying to figure out what type of pots I have, can you help?

Treatment and medication
1

I figure some of you have a lot more knowledge than me on this issue since I have only had these symptoms for about a month and a half. I am hoping that if I show my symptoms here that someone may he able to tell me a little more about whtmat is going on and perhaps what I should do.

First off.

Tsh levels: .76

T4 free: 1.5

Thyroid antibody Tpo: 10

Thyroglobin Antibody: < 1.0

T3 Free: 3.1

B12: 666 (I am not a demon)

Vitamin E: 6.5

Folate: 10.72

D3: 35

I listed my blood tests for reference.

Symptoms as of today:

Elevated heart rate at rest: 85-95bpm sitting

Elevated heart rate when standing: 108-140

Hypertension when sitting: 135-150/80-90

Hypertension when standing that turns into hypotension the longer I stand and the higher my heart rate gets: 150/104 - 112/89

Constant warm/hot skin around my neck/upper chest

(Normal internal tempatures 97°-98)

Pounding heartbeat during digestion or after standing.

Palpitations(sometimes) when moving from standing tachycardia to sitting and sometimes when standing and taking a deep breath or bending over to grab something. Palpitation type: Skipping(fast beats then big thud then normal fast beats then pause then big thud 2-4x)

Jittery feeling after standing like too much caffine.

Tremor mostly internal, but sometimes visible in my fingers.

Cold feet and after standing sometimes cold fingers.

Muscle pain and twitching periodically through the day.(Thighs/ankle/upper back/pec muscle/left elbow)

Left arm ache sometimes when standing.

General tiredness, but some of the symptoms listed are at their worst at night.

Unexplained weight loss: Approx 1lb a week.

Lightheaded sometimes when standing.

Headaches periodically

Increased urge to urinate when supine

Any thoughts or diagnosis would be appreciated and considered!

2

There is only two type of pots  Standard POts and HYper POTS. With standard POTS which is what most people have as a rule when you stand you will have a high heart rate but your BP will fall,  Standard pots people are more likely to pass out on standing and have vertigo type symptoms .  Hyper Pots is different when you stand you will have an increased heart rate and also and increased blood pressure. You will feel more unwell the longer you are on your feet, when symptoms are bad you will also feel light headed and vertigo type feelings but fainting is a rare thing compared to standard pots.   The urge to pass urine seems common to both. Blood tests tend to not show anything, unless you have been unwell for a long time and have issues due to nutrition and lack of movement. Weight loss is common in both and also gastric issues. Headaches again common in both.

Pots in general can be primary or secondary.. meaning..  Primary you get this as a reaction to a viral infection /glandular fever etc.

Secondary.... Pots is caused bu another illness such as ME/CFS  EDS  etc.  How you get it does not alter the treatment or outlook.  

 

3

Thanks for responding.

Yesterday, my bp when up upon standing and heart rate up on standing. Then as time went by my heart rate increased to 140bmp and my bp decreased to 112/89. Previously this had not happened, but my heart rate would stay at 108 and my bp would stabilize at 120/85 - 130/90, but I would still feel horrible. I have yet to faint.

I need help understanding a bit more. I have read research papers and watched videos and read many posts, but mine seems to be different or not really pots at all.

4

That sounds like HYper POts.. People with common standard pots have crazy high heart rates upon standing and crashing low blood pressure.

Hyper Pots only accounts for about 5% of Pots cases so there is not alot out there to read up on. I have Hyper POts and its been hard finding anything on the net of any use and i have been reading up for a few years.  I take low dose bets blockers and it does help regulate things and stop you feeling so bad.  Hyper Pots is mainly due to constantly high adrenaline and cortisol levels , our bodies are stuck in a constant fight or flight mode. Amitriptyline in low dose also helps regulate the nervous system .

 

5

I am allergic to beta blockers, or atleast the one I tried metoprolol. 

Do you have any experience trying the natural remedies? I have tried a few and the constant diuretic nature of most just makes things worse over time. I just tried Ashwaganda and it helped for a few days and then the diuretic kicked in high gear and depleted my salt and potassium. I had some pizza and felt a lot better.

I have some motherwort on the way and L-theanine that I wish to try together come monday.

I also came to the conclusion that I have hyper-active adrenals, but my thyroid is also in high gear and I am wondering if that is the base of my problem and my pots is secondary. 

Did you perchance have your thyroid evaluated over the years?

6

No thyroid issues.. you tend to have clear bloods wit POTS.. Have your bloods done to rule things out. But you will find with hyper pots you have constant issues with adrenals.. because that  is what hyper pots is like i explained above.. you are constantly in fight or flight, you will also burn more calories due to the excessive adrenaline in your system.  Thats why most people with hyper pots are first diagnosed with an anxiety disorder of some kind.

As for meds... im afraid there is little in the holistic approach that helps and you have to be careful not to make things worse.  I would try other meds as you need something to block the adrenaline thats the only way you will get any relief which is why beta blockers work.

 

7

Thank you. I plan to see an endocrinologist as soon as I have proper insurance. I continue to see links to thyroid issues in almost every page I read about Pots. I don't really know what would be better to have. A tumor on my adrenals, a autoimmune, or just an over active thyroid. I can't hope for any.

 

8

I would appreciate any other insight from you or anyone else who sees this post.

As for me, I have found that indeed, drinking water and increasing salt intake is helpful. My blood pressure is a not the salt sensitive kind and so, I find that to be good for the symptom remedy I just mentioned. However, I do have mild left ventricular hypertrophy and I have seen that this is caused by being fat, having high blood pressure for long periods of time, or hyperthyroid.

If any of you all serve Yahweh and wish to pray for me I would appreciate it and I will do the same if you let me know. Otherwise, more information, comments, understanding please!

9

I have many symptoms of Dysautonomia, but not the actual POTs symptom as my heart beat only rises by 20bmp when I stand up. But every one of my symptoms started as soon as I took beta blockers which I was found to be allergic too as well so they took me off last March, My symptoms all remain however and I consider the beta blockers are what triggered Dysautonomia in me.

10

Hey Peter,

I am sorry to hear that. I have heard that many blood pressure meds can cause this issue. I am wondering myself if I put myself in this situation by taking Hawthorne berry which acts like a beta blocker and a calcium channel blocker naturally plus the high amounts of stress I was under trying to lose weight, low calorie diet, and dying family.

I am glad your bpm only goes up 20. That is near normal actually from my research. I am in the midst now of seeing if my issues have been partially caused by nitric oxide deficiency.

What else are you going through?

11

My current symptoms are:-

Fatigue, such that my speech becomes slurred and I only have enough energy to breathe. Very hard to get up in the morning, then very hard to actually make myself do anything.

Brain fog/dizzyness/unbalanced/Depersonalization-derealization disorder, I feel like I am permanently drunk now and that I am not really here, just dreaming I am. 

Breathlessness and forgetting to breathe. Its as if I have to remember to breathe, at night, I sometimes forget and wake up in a panic, my overnight blood oxygen level is 85%, when relaxing it is still low at 91%, but it can get as high as 98% so nothing mechanically wrong.

Variable heart rate, not as bad as it was, my heart rate is around 30 bpm faster than it used to be, buts sometimes it will jump up to 147 whilst I have just been sitting down doing nothing for half an hour.

My stomach seems to be asleep, I get full very quickly now and still feel full six hours later.

Heart palpitations/ectopic beats, especially after eating.

Burning and tingling in my feet when lying down, feels as if I have been beaten on the soles.

Bad heartburn.

Urinating maybe only once or twice in the day, then four or five times at night.

Feeling hot and cold at the same time, cold sweating.

Sometimes I feel my whole body quivering inside.

Loss of hunger and thirst. I did an experiment a few weeks back, didn't eat as much as a peanut for 42 hours and still didn't feel hungry.

12

That is horrible. I have very little experience with this so I of course cannot help.

I can tell you I suffer from the same restroom habits, which I think is partially because our lying down pushes on the bladder and at night you feel more as you get more tired, but are still wired.

And I also have the inside quivering which I still have not been able to get an answer on, as well as muscles spasms which are not reliant on mineral intake during the day.

I hope you have someone with you to help peter.

As for the breathing, your body does that on its own. I had trouble with that for a few days believing that I had control over my breath, but I learned that my body will force me to breath no matter what I am going through. The stopping breathing while you are sleeping sounds like apnea which would also cause your heart rate to shoot up at the same time as your body forces you to wake up to adrenaline filled blood. I got some plastic nose inserts to force open my airways at night and they help me.

Heart rate variability is a good thing, you do not want your heart to get stuck on a particular number. My heart skips sometimes when it goes high and an activation of my vagus nerve or baro-receptor forces it to come down suddenly. (Sometimes after a large bowel movement, sometimes just bending over while I am standing) So, in a sense be happy about that. My heart rate has been going up the last few days and I can control it a little by drinking decaffinated coffee for an immediate boost of Nitric Oxide. I am depleted and I wonder if you are depleted too.

Has any doctor told you the cause of yours or have you been able to figure it out?

13

My symptoms all started the day they put me on beta blockers, I was found to be allergic so they took me off, that was last March. Until a month ago, the NHS has refused to consider that Beta Blockers are to blame, but I finally got a cardiologist to listen to logic, namely, that beta blockers disrupt the autonomic nervous system by blocking adrenaline receptors, that every single one of my symptoms is a symptom of a disrupted autonomic nervous system, plus I found a site that makes medical equipment and that states beta blockers can cause autonomic neurapathy.

Regarding the urination at night, I think that it is a combination of fluid being stored in the legs, and the kidneys not working when your body thinks it is in fight and flight mode.

As for your body doing the breathing on its own, well its supposed to, that's one of the functions of the autonomic nervous system, receptors detect the amount of oxygen in the blood, and get your lungs to do their thing without you even being aware, when the ANS is working that is. Mine doesnt seem to be, every night as I fall asleep, I awake with a start as I have literally forgotten to breathe. I am seeing a sleep apnea clinic at the end of the month, but if it is sleep apnea, its central sleep apnea, not obstructive.

The fact is my oxygen goes so low when I am still awake and so I know its not obstructive, when I was in hospital, the alarm kept sounding on the NHS machine because my oxygen was only 87%

I am totally alone, quite frightening when you have nightmares of not being able to breathe and only being able to draw breath when you wake up.I do worry that if I don't wake up before I go unconscious, then I will die.

 

14

Worry is worthless, as Christ said.

I have heen dealing with theose thoughts as well. I have no idea what my bodies' tipping point is, but we are still alive. My father told me something very true. If I die then I die and I will see my maker. I don't want to see him right now because I have work to do for his sake, but if he decides it is time then it is time.

That is not very comforting at first, but since I trust him it has become more so comforting everyday.

What I hear about neuropathy is that your nerves WILL grow back, but it is slow. You have to force yourself to eat right and stay clean I hear. So perhaps the natural route is best for you while you get better. The cpap machine will keep you breathing whether you like it or not from what I hear. So, I actually hope they give you one, but you have survived even till now. And perhaps convince your insurance that you need a nurse visit daily.

Can you tell me more about the symptoms of neuropathy? You said tingling and such, but is it pain or muscle spasms? I had issues before I took a beta blocker(proper) (Though the hawthorne may have caused this), but I got a serious side effect of red pin point spots on the bottom of my foot indicating bleeding. I stopped after 4 days of taking the metoprolol and refused to take the ARB they gave me. So I am wondering if the hawthorne may cause some of the symptoms you are having and if I can remember having them over time before this hit me.

15

The tingling in the feet and lower legs is not painful, just tingling like fading pins and needles. Soles of feet have that burning feeling as if you had been beaten on them earlier so you get that afterglow.

Everything I read about Autonomic Nervous System problems are that they are incurable.

I am in the UK so no health insurance, just the NHS so they are less willing to be of service.

This is a good site regarding the ANS system, at the end it talks about symptoms. http://www.dantest.com/dtr_ans_overview.htm

16

Don't give up.

I have read the opposite, but I don't remember where.

Also, if you haven't already, perhaps check out if you have a nitric oxide deficiency. I do, and some of my issue have come from it.

I have grown frustrated with health care in general. I go and the doctors I have seen refuse to teach the intricate nature of the problem or they have been ignorant of what the problem is or they don't care enough to take the time to figure it out or they have been rude and just wanted to give me pills to fix the symptoms and lied about the symptoms from the pills. 

So, I have taken it upon myself to become a researcher of my own body and natural remedies. I have found people also lie about natural remedies, but with enough critical thinking and some testing at low doses, I have made a little progress.

I know for a fact that God has put a natural remedy for every single sickness on the earth so far. And if you look up "nerve healing" or "how long does it take for nerves to heal" or something similar I am sure you will find information about it.

Don't give up Peter even if you see ignorant people online saying it is not possible to get better. I have also seen people complaining and telling others that it is not possible. Sometimes things progress to a point where it is too late to act, but we don't know what that point is because everyone has a different body.