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Hello! Newly diagnosed but with loads of questions


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It’s been twelve years since I had a total thyroidectomy due to thyroid cancer and I guess I’d gotten pretty used to feeling “off”. There have been many times where I’ve attributed symptoms as being a dosage issue with my levothyroxine (thyroid hormone replacement). I started to notice issues with healing and recovering from viral infections about three years ago. I started requiring steroids instead of antibiotics (often my family doctor would prescribe two different antibiotics for something before resorting to prednisone or topical steroids). About two years ago my hands were going completely numb for periods of time and when I could feel them/regain grip strength it was like painful pins & needles. I’ve experienced this in my legs intermittently since and was prescribed wrist splints to sleep in for “carpal tunnel”. I was sent for nerve testing at that point and my nerves were fine. I’ve also noticed bruise-like “rashes” on my legs that go away within a day. Occasionally I have excruciating stabby headaches that occur in clusters and last less than 10 minutes on the top left side of my head (same exact spot every time and it feels like a woodpecker is having a go at my brain). I’m now beginning to think these issues could’ve been related to the POTS and Orthostatic Hypotension I’ve just been diagnosed with. I was diagnosed by an Internal Medicine specialist at an Acute Ambulatory Care Clinic via monitoring heart rate and blood pressure going from sitting to standing (60+ HR spike and massive drop in my usually hypertensive 1 BP) after showing up to the hospital because I had blacked out three times in one morning and was having trouble standing. 
I’ve also been seeing a Hematologist for over six months for fatigue, elevated platelets, wbc, crp, esr and chronic iron deficiency. My sodium level was low once when checked with her. She screened me for Jak2 mutation and that came back negative (yay no blood cancer). My ECG was abnormal via left atrial enlargement and nonspecific ST abnormality, but my rhythm was normal so that seems positive. My AM cortisol level was low-normal. I’ve been referred to a cardiologist in my city that runs the only POTS clinic, so I’m very grateful for that. I don’t know when my first appointment will be yet, but I’m getting eager as I can no longer stand for longer than a minute and am waking at night with painful leg cramps. I’m so relieved I went to the hospital and had my blood pressure and HR investigated because my Hematologist was ready to label it “chronic inflammation due to stress” after nearly diagnosing me with blood cancer and call it a day. Oof!

I’m usually in pretty good physical shape in terms of strength and agility but since about last fall everything has been in decline. I now get uncomfortable chest pressure/tightness going up a hill or climbing stairs. I’ve lost about 30lbs since winter (but also every time I lose weight my thyroid replacement dose becomes too high, so it’s very difficult to stay on top of because by the time the adjustment has been made my baseline has changed again via more weight loss caused by overmedication - fun! I was hoping to lose weight for my nonalcoholic fatty liver disease as well but upon repeat ultrasound the weight loss did absolutely nothing to the degree of fatty infiltration and otherwise I do not feel particularly unhealthy at my current weight so I’m indifferent at this point either way, I’d just like to be less symptomatic). My Endo put me on Metformin because she suspected I had PCOS related fatty liver, but my PCOS panel came back normal/negative. I’d like to be taken off of Metformin now because my blood sugar has always been perfect and I feel that it’s the cause for the nausea/vomiting I’ve had trouble with. 
 

If anyone has any insights I’d love to hear them. I’m feeling a bit overwhelmed and lost. Ty in advance! Please enjoy this picture of my dog!

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Hello @Bobannon - welcome to the forum!!! Wow - you have a lot going on! And it looks like you had the run-around with doctors!!!! -- I am sorry you are having such a tough time, but also glad that some of the more serious diagnoses were ruled out! 

8 hours ago, Bobannon said:

I’m now beginning to think these issues could’ve been related to the POTS and Orthostatic Hypotension I’ve just been diagnosed with.

I am a bit confused. POTS and orthostatic hypotension are two different autonomic disorders, and normally the criteria for POTS is an increase in HR WITHOUT a significant drop in BP. Here is the definition as per this link: Postural Tachycardia Syndrome (POTS) Diagnosis and Treatment: Basics and New Developments - American College of Cardiology (acc.org)

"POTS is defined as the presence of chronic symptoms of orthostatic intolerance (≥6 months) accompanied by an increased heart rate (HR) ≥30 bpm within 10 minutes of assuming an upright posture (Figure 1) and in the absence of orthostatic hypotension (blood pressure [BP] fall >20/10 mmHg).1,2 "

Unless the criteria have recently changed this has always been important in diagnosing POTS, since an increase in HR is a normal compensatory mechanism of the ANS to a drop in BP. Orthostatic hypotension is also a form of dysautonomia, but it is different from POTS. 

Has your doctor considered a TTT? This is normally the test considered essential in diagnosing POTS or OH. There are some symptoms that OH and POTS share.

8 hours ago, Bobannon said:

I was diagnosed by an Internal Medicine specialist at an Acute Ambulatory Care Clinic via monitoring heart rate and blood pressure going from sitting to standing (60+ HR spike and massive drop in my usually hypertensive 1 BP) after showing up to the hospital because I had blacked out three times in one morning and was having trouble standing. 

Only 30 % of POTS patients actually faint ( as per literature ), but syncope is common with OH. Often OH is caused by the ANS triggering sudden dilation of the blood vessels, which will cause the blood volume to pool in the lower extremities. This naturally will cause symptoms of pre-syncope and also syncope. The symptoms of POTS can also be caused by blood pooling from vasodilation, however the increase in HR is not normally accompanied by a significant drop in BP - hence the differentiation between the two. 

I am not sure if you can have both diagnoses together or if the one cancels out the other. Good thing you have an upcoming appointment with a specialist! Hopefully he/she ( they? ) will be able to get to the bottom of this. 

The good thing is that there are meds that can help with vasodilation and OH, and these meds can also be used to treat certain types of POTS. Midodrine and Fludrocortisone, for example, are both medications that can help with excessive vasodilation. Beta blockers are commonly used to treat orthostatic tachycardia IF THE TACHYCARDIA IS NOT CAUSED BY A DROP IN BP. If it is then correcting the hypotension should stop the tachycardia as well. 

8 hours ago, Bobannon said:

I now get uncomfortable chest pressure/tightness going up a hill or climbing stairs.

This symptom can be caused by the drop in BP, since the heart has to pump extra hard to circulate the blood. 

 

8 hours ago, Bobannon said:

I’ve lost about 30lbs since winter

Sudden weight loss can cause orthostatic symptoms, since now the body has to adjust to a different body mass. Hypotension with weight loss is not that uncommon. 

So - I hope your appointment will NOT be positive for POTS, and that the doctor will be able to help you with these difficult to deal with symptoms. Good Luck - and please keep us posted!!!!!

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Also @Bobannon - have you increased salt and fluid intake and wearing compression hose? These measures are ESSENTIAL for blood pooling, and are commonly prescribed for both POTS and OH. They help to prevent syncope as well. Since you are not currently able to stand it is also very important that you do not become deconditioned - do leg and abdominal exercises and attempt standing every hour or so, even if you just stand for a few seconds. 

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1 hour ago, Pistol said:

Also @Bobannon - have you increased salt and fluid intake and wearing compression hose? These measures are ESSENTIAL for blood pooling, and are commonly prescribed for both POTS and OH. They help to prevent syncope as well. Since you are not currently able to stand it is also very important that you do not become deconditioned - do leg and abdominal exercises and attempt standing every hour or so, even if you just stand for a few seconds. 

The Internal Medicine specialist diagnosed me, so maybe I should wait for the Cardiologist that runs the POTS clinic before I believe her. Haha. Hmm. She said that the POTS could be secondary to the inflammation going on for the past six months but that the OH is likely a new onset because I didn’t have the blacking out before the last two months. Apparently the giant leap in HR isn’t typical of OH? Also! Does a POTS doc/cardiologist usually work up the cause of inflammation if it’s secondary? I’m kind of worried it’s a more serious thing and if I get referred back to my Hematologist I don’t know what good that will do because she’s only been concerned about blood cancers so far.

I was told that the Cardiologist could write me a prescription for compression stockings but that in the meantime I should just look for some to order myself as it’s less expensive because I don’t have insurance coverage for prescriptions. I ordered some knee socks and leggings (the leggings do absolutely nothing and aren’t tight enough), while I’m still waiting on the knee sock delivery but I’m now thinking those will be a waste of money too. What should I be looking for when I order them?  

I’ve been eating more pickles and adding salt to food before I eat it. Should I be doing more than that? I’m a bit confused because it says to lower high blood pressure you need to cut down on salt and my baseline is hypertensive 1 or prehypertensive. The IM specialist did mention this though so maybe it doesn’t matter. I’m still able to go on dog walks everyday, my trouble is mostly with standing or getting up from a seated or lying down position and waiting in the elevator or in line. It’s not a great time walking, but I can so I do with some breaks if I feel dizzy. I will try to do more stretches! Especially if things get worse, which they seem to be with the warmer weather and humidity. 

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Hi @Bobannon - POTS can be triggered by inflammation, as a matter of fact they only recently realized that many POTS types are auto-inflammatory in origin ( as opposed to auto-immune ). I myself have HPOTS and my autonomic specialist put me on Plaquenil - an immune med. It has greatly helped with joint pains, and also has improved my energy levels! 

1 hour ago, Bobannon said:

Also! Does a POTS doc/cardiologist usually work up the cause of inflammation if it’s secondary?

In most cases the cardiologist refers patients back to the PCP for a work-up for immune problems or suspected inflammatory issues. This would involve blood tests etc. Depending on the results of basic labs you may get referred to a rheumatologist. 

 

1 hour ago, Bobannon said:

I ordered some knee socks and leggings (the leggings do absolutely nothing and aren’t tight enough), while I’m still waiting on the knee sock delivery but I’m now thinking those will be a waste of money too. What should I be looking for when I order them?  

For most POTS sufferers a minimum of 30 mmHg counter pressure is recommended, as well as thigh high hose ( knee-high does not provided enough area of pressure ). You can easily order compression hose online, but it really should be fitted. This can be done at any home medical supply store. They will measure the length and circumference of your legs and then fit you with the appropriate size garment. Too tight can interrupt blood flow and too loose would be useless, so getting the correct size is extremely important. Just picking between small, medium or large is definitely not good enough! 

 

1 hour ago, Bobannon said:

I’ve been eating more pickles and adding salt to food before I eat it. Should I be doing more than that?

Generally speaking - POTS patients are supposed to increase BOTH fluids and salt. Adequate hydration is very important to avoid low blood volume, which can cause POTS symptoms to worsen. but simply drinking more will lower your electrolytes, so you should always increase your salt intake as well. Most POTS patients drink between 2-3 liters of fluid a day and add electrolytes or salt. However - if you have problems with hypertension as well you need to consult your doctor before increasing salt. I have both low and high BP and am on IV fluids that contain sodium and other electrolytes, and even during times of high BP I need the increased salt. Many POTS sufferers also use banana bag solution or sports drinks to combine fluids and electrolyte supplementation. -- If your cardiologist has not recommended increasing salt and fluids I would call and ask, but otherwise it is generally recommended for POTS, as well as OH. 

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Thanks for answering my questions and being so generally helpful Pistol!!! 

I think it sounds like I should just wait until I see the Cardiologist, but these are good tips for management of symptoms in the meantime.

I was referred to the Hematologist because my PCP couldn’t figure out the inflammation. My liver specialist ran a bunch of autoimmune blood work to rule out autoimmune cause of NAFLD because my diet is pretty liver healthy coincidentally and I don’t have metabolic syndrome, but I do have high cholesterol (she ran ANA, Smooth Muscle, Mitochondria, ENA, DNA Double Strand, Nuclear Antibody, IgG, IgA, IgM, Ceruloplasmin, A1A) and all came back within range. My IgA was high for my age but generally normal in the margins. No Hepatitis or anything so that’s good! Still could be related to my lack of thyroid gland too because I was left hypothyroid for a prolonged period last year. I’m a bit worried that I do have liver fibrosis even with normal liver enzymes as that can be linked to POTS or OH I think? But again, won’t know until after the scan end of July. No COVID or Mononucleosis. I do have a consistent low grade fever, but it never goes above 99.8. My CRP has been between 20-50 and my ESR was 52 once, but went back down to the 30s the last time it was checked. If it was autoimmune disease wouldn’t it come up on the panel the liver specialist ran? 🤔 

 

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I have a diagnosis of both orthostatic hypotension and tachycardia because my BP plummets on standing while my HR goes nuts so not technically POTS but close enough. While the technical definition is no BP drop every Dr uses slightly different criteria for diagnosis. I was diagnosed at a specialist clinic with a Mayo trained dysautonomia neurologist. I also am hyperadregenic. Every specialist says that the specific diagnosis doesn’t matter so much because most of the treatment is the same. 
 

I wouldn’t discount a cardiologist that understands dysautonomia not recommending autoimmune drugs. When I saw mine the first time he told me I should get IG therapy so those that keep up with research AND are open minded might recommend it. My neurologist ordered it but I had a positive ANA and anti Smith antibodies plus a positive alpha a-1 from Celltrend (Germany, see below).

The auto antibodies that are implicated in dysautonomia are not part of the standard array that most Drs, including rheumatologists run. There are no commercial labs in the US that do them. The only one is in Germany and many of us have sent our blood there for testing. If you are close to a research center that is investigating this potential cause and can get on a trial you might get it here. Mayo has an existing panel that checks for some rare things but most Drs don’t know about it and it doesn’t check for the ones currently being investigated (alpha, beta, muscarinic and a few others). 

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3 hours ago, Bobannon said:

My CRP has been between 20-50 and my ESR was 52 once, but went back down to the 30s the last time it was checked. If it was autoimmune disease wouldn’t it come up on the panel the liver specialist ran?

I was tested numerous times for AI disease due to generalized joint pains of unknown origin. All AI tests including extensive work-up by rheumatologist always came up normal except for an elevated ESR ( 54 ). My autonomic specialist ( one of the leading in the field ) states that auto-inflammatory disease ( recently linked to POTS ) cannot be diagnosed with AI testing b/c it involves a different branch of the immune system, the innate immune system. So common AI tests that rheumatologists order will not show it, just as @p8d suggests. 

BTW - I too have NAFLD and high cholesterol despite a liver-friendly diet and no alcohol!

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Interesting!!!! Thanks for sharing p8d & Pistol. Science is neat. I’m going to go on a deep dive research soon when I’m feeling a bit less overwhelmed. For now I will focus on finding decent compression garments for the leg pain so I can get a full night of sleep! I’ve checked out the ones I can order online and my ankle size is one size, my calf size is another size up and my thighs are one up from that based on the size chart! Or something is the right measurement for the top half of my legs based on a size chart but way too large for the bottom half. Beginning to see what you mean re: S-XL sizes not cutting it. Oof.

I actually ordered some electrolyte powder months ago and started taking it in big bottles of water daily before I had even heard of POTS, and I am thinking that maybe I unknowingly was helping manage some symptoms (I ordered it because of a low sodium blood test back in December). I ran out in March and that’s around when I started fainting. Funny! 

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@Bobannon  @Pistol @p8d wow this a lot of great information. I was also just diagnosed with NAFLD which seemed to come out of the blue and I have chronic joint pain made worse by activity. I don’t mean to go off topic I just want to thank you all for mentioning this. It seems like I spend all my time getting HR and BP in check and the other symptoms take a back seat. This info will help me to initiate a discussion with my medical team. 

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Today my heart rate jumped from 78 sitting to 208 standing and then 180 over a minute before slowly going down again. Is there a specific number to lookout for that should be more concerning or a point where you just decide to avoid standing for a while until you’ve had more salt and water? 

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@Bobannon - there really is no specific number, anything over 120 is considered tachycardia. The diagnostic criteria used most commonly states " increase of 30 BPM or above 120 BPM within 10 minutes of standing" .

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54 minutes ago, Pistol said:

@Bobannon - there really is no specific number, anything over 120 is considered tachycardia. The diagnostic criteria used most commonly states " increase of 30 BPM or above 120 BPM within 10 minutes of standing" .

Right. I guess there’s no danger associated with anything over 200 other than likelihood to faint? 

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8 hours ago, Bobannon said:

I guess there’s no danger associated with anything over 200 other than likelihood to faint? 

Well - for me there was. I would faint or have seizures when HR went above 160 at the same time as my BP went above 150ish/100ish. I could run a HR of 180 without a spike in bP, but could not sustain that rate without eventually fainting. The fainting and seizures appear to work almost like a reset - everything normalizes afterwards. 

I once was on a holter monitor that recorded 3 hours of HR in the 150's ( eventually this led to fainting ). During this time I was - of course - highly symptomatic. My cardiologist said that although the tachycardia itself is harmless, with prolonged periods of HR's as high as you describe there could eventually develop problems, including heart attacks, simply because the heart cannot sustain rates like that for very long. I believe that that is why many of us faint - the heart cannot adequately circulate blood at those rates. You describe that your HR jumps up to above 200 and then slowly lowers again - that should be less of a problem to your heart muscle than a sustained HR in that range, or even lower. 

You mention that your HR spikes and then falls - does it remain elevated at all once it drops or does it eventually go back to normal? And does it ONLY get high when your bp drops, or does it ever get high without a drop in BP and then stay there?

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8 hours ago, Pistol said:

Well - for me there was. I would faint or have seizures when HR went above 160 at the same time as my BP went above 150ish/100ish. I could run a HR of 180 without a spike in bP, but could not sustain that rate without eventually fainting. The fainting and seizures appear to work almost like a reset - everything normalizes afterwards. 

I once was on a holter monitor that recorded 3 hours of HR in the 150's ( eventually this led to fainting ). During this time I was - of course - highly symptomatic. My cardiologist said that although the tachycardia itself is harmless, with prolonged periods of HR's as high as you describe there could eventually develop problems, including heart attacks, simply because the heart cannot sustain rates like that for very long. I believe that that is why many of us faint - the heart cannot adequately circulate blood at those rates. You describe that your HR jumps up to above 200 and then slowly lowers again - that should be less of a problem to your heart muscle than a sustained HR in that range, or even lower. 

You mention that your HR spikes and then falls - does it remain elevated at all once it drops or does it eventually go back to normal? And does it ONLY get high when your bp drops, or does it ever get high without a drop in BP and then stay there?

Oh wow your experience sounds truly exhausting. I don’t actually know what my HR does beyond the 2min mark. I’m supposed to do the 24hr HR monitor thing with the cardiologist next. I’m currently looking into some kind of smart watch situation as well because it can’t hurt. I think even if eventually my issues improve it’ll be a good thing to have because of my lack of thyroid gland, it’s helpful to check my body temp and HR for medication dosage monitoring (especially to ensure my body is up to par from a metabolic standpoint for reducing fatty liver).

My HR jumps immediately upon standing and then my blood pressure falls fairly dramatically at the 60sec after standing mark. I can almost feel it falling when I stand in place for prolonged periods as well though (even quicker in the shower or elevator I have to take in my building). My legs get weak, shaky, sort of tingly/painful “pins&needles” and my balance starts to go along with all of my energy. It’s like a “wooshy” feeling and I get quite lightheaded and woozy. If I crouch down on my legs it helps me feel like I can avoid a faint but I don’t feel very stable getting up. It’s been fairly embarrassing in public (which I guess I’ll probably get over). 

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