Should I suggest Pots to the GP based on this ?

[LaCe10]

Hi,

I am a new member searching for some information. I just recently (last few days) heard of PoTS.

I was searching for answers to an array of symptoms which my almost 15yo daughter has been experiencing for almost a year now. When we went to the GP initially, she was diagnosed with Iron deficiency anaemia and had an iron infusion, which has brought her iron levels back to normal, so GP expected her symptoms to disappear within a month of the iron infusion.

However she is still experiencing the symptoms, which are dizziness, breathlessness, stomach ache, nausea, and often vomiting, during the night and morning, she says she always feels worse in the am and evening, usually soon after eating. She is so pale all the time, which we thought was linked to the anaemia.. GP believes it is anxiety, but my daughter is adamant it is not.

After reading about PoTS, I went out and purchased a wrist BP monitor and have started monitoring her pulse, it is regularly elevated, today I tried the poor mans tilt table test and was wondering if these results could be indicative of PoTS. I am also not sure if I am placing the cuff in the correct place, which could also screw up the results. she has been seen by the GP several times and also the Emergency room, but no one ever commented about an elevated H/R.

Laying (for 15 mintutes prior) (00) 95/57, H/R 101
Standing (1 minute) 119/71 H/R199
Standing (2 minute) 113/70 H/R199
Standing (4 minute) 105/65 H/R 98 *strange but she may have moved the cuff
Standing (8 minute) 101/70 H/R 153
Standing (10 minute) 105/67 H/R 147
Laying (3 minutes) 92/52 H/R 83

I have logged several 199 H/R in the past few days and several around the 140 and 150 mark. Usually it is 120 or slightly above. Her normal resting is between 68 and 75.

Thank you for any insight.

 

[notmyself]

199 heart rate from standing??...maybe the monitor is not working properly..

 

[Gingergrrl]

Do you literally mean that her HR was 199, as in just one bpm lower than 200?!! If so, this is insanely high. I have POTS since 2013 and prior to beta blocker my HR was going into the 160's and 170's every day but it has never in my life hit 199. I would absolutely tell her GP and also make sure it is all sinus tachy vs. an arrhythmia.

 

[LaCe10]

Does 199 not make sense ? maybe I am not putting it on her wrist correctly,
I have tested it on myself and my results were as I would have expected. I have logged 3 other b/p of 199, each time when she stood up from lying down. I tried it on myself going from sitting to standing and mine barely increased when I stood up.

Yes, the monitor indicated a pulse of 199 when she stood up.

 

[Gingergrrl]

Sorry, just to clarify, is her (systolic) BP at 199 or is her HR at 199?

 

[Sushi]

I went out and purchased a wrist BP monitor and have started monitoring her pulse, it is regularly elevated, today I tried the poor mans tilt table test and was wondering if these results could be indicative of PoTS. I am also not sure if I am placing the cuff in the correct place, which could also screw up the results. she has been seen by the GP several times and also the Emergency room, but no one ever commented about an elevated H/R.

How does she feel when the monitor shows 199? That is very high and if it were a correct reading she would really feel it! Note: wrist monitors are not as accurate as chest strap monitors and it is very important to place them correctly, have them tight, etc. Some men with a lot of hair on their arms have to shave it to get accurate readings. They also do not "perform as well" in some situations. When you manually feel her pulse, if it were 199 I don't think you would even be able to count it. I also have tachycardia sometimes and I really feel any significant increase in pulse.

199 heart rate from standing??...maybe the monitor is not working properly..

You might want to read about the limitations of wrist monitors.

Does 199 not make sense ? maybe I am not putting it on her wrist correctly,

Quite possibly.

 

[Hip]

I'd suggest using old fashioned counting the wrist pulse over 1 minute to measure heart rate, because a heart rate of 199 on standing does not sound right.

If you get an increase in heart rate on standing of 27 or more in the active standing test for POTS, that is diagnostic for POTS. Usually the jump in heart rate will be a little higher if tested in the morning, compared to later in the day.

 

[LaCe10]

Thank you all.

Sorry, it's her H/R which was 199 and not BP that was a typo.

I have tried to take her pulse the old-fashioned way but was unable to, hence why I got the wrist cuff, I thought that would be easier (and more accurate) for me to do at home rather than the arm cuff.

The morning I did the test, she was awfully dizzy and nauseous and vomited in the car on the way to school. She has never fainted despite complaining of being permanently dizzy.

 

[Apple]

My HR has hit 170s by standing (i was on a med which worsened my pots), so while 199 is super high, don't just assume it's wrong. However, wrist BP monitors are not the most accurate things. (One recently told me I had a BP of 150/130 - which for a thin, twenty something doesn't seem exactly seem right)

A pulse oximeter might be a better way of monitoring her HR. You can buy them cheaply from amazon/ebay.

Is your daughter flexible / hypermobile? If so, please look into ehlers danlos syndrome. This can cause complications such as pots and GI problems.

 

[jimells]

@LaCe10 I am sorry to hear how sick your daughter is. It must be extremely difficult for both of you. I'm also sorry to say that your biggest obstacle will be finding a competent physician. After 15 years of illness, I am still looking, or rather, I have given up hope of ever finding one.

Unfortunately a POTS diagnosis would help only a little, as the diagnosis tells us nothing about what is causing the symptoms, and few physicians know anything at all about the syndrome. Gut problems and iron deficiency are not particularly associated with POTS, as far as I know.

It is possible of course for a person to have three separate unrelated illnesses at the same time, but if there is a common denominator, that is probably a sensible place to start. So for the average physician that would be anxiety, panic disorder, the all-purpose-and-ever-handy "stress", blah, blah blah. Since a verified-by-lab-test iron deficiency does not fit into the story, it will be conveniently discarded as irrelevant.

Another common denominator for all the symptoms listed, including the iron deficiency, is mast cells behaving badly. Doctors have only ever heard of the rare disease of mastocytosis, and since is rare, that seems to mean that no doctor will actually see it, therefore no one can have it.

Mast Cell Activation Syndrome (MCAS) is much more common but doctors know nothing about it either. The best website to learn about mast cell illness is Lisa Klimas' MastAttack.org She also has a Facebook group, but I don't do Facebook, so I can't help with a link to that.

If you search this forum for my other posts, you will find a number of posts on mast cells, including links to research papers, and there is also a subforum here on mast cells.

 

[Gingergrrl]

@LaCe10 Are you in the US or UK (or somewhere else)? We might be able to give referrals for POTS specialists depending where you are although there are very few of them.

It is very common to have both POTS and MCAS (like @jimells said) and this is what I have although mine has an Autoimmune cause (following an initial viral cause).

If your monitor is correct, then 199 is an extremely high heart rate. When I was in the 160's and 170's almost daily in 2013, my hands and arms would go numb and it felt like someone was squeezing my heart muscle and it would take days to recover. This was corrected for me with being put on a beta blocker (but there are other med choices as well for POTS). I also take Midodrine.

 

[pibee]

I had 179 HR while walking in the city, buying cheese at the food fair, without feeling palpitations....it was more than what was my usual then, triggered by tilt test. So when i was going home after tilt up test I felt my usual fatigue, but not even shaking. I never shake at 170 which I measured many times .

so i guess some don't really feel 199 either.


my HR/tilt test completely normalized on IVIG.