I was diagnosed negative by TTT, however i do not agree with the specialist

[DizzyPopcorn]

Hello all. Sorry for not being here a lot lately, I've been busy with life problems. 

Ill keep this short. Ive been feeling off for 3 years with on and off symptoms. 4 months ago, i was put on medical leave because my symptoms increased and i couldnt drive anymore. Ive known POTS for about 2 years now and really pushed for more testing that way after the cardiologue ruled out heart problems.

My problem, is that i had a TTT yesterday and it was negative according to the autonomist specialist. But he gave me 2 bad reasons for not believing him :

1) You dont have POTS because your blood pressure did not decrease. And even if i (the specialist) would diagnose you with it, i cant really help you because you dont faint and the only thing i prescribe is fludrocortisone, salt and water.

2) Your heart rate didn't really increase that much during the test like my other POTS patients, and when i reclined the table, your heart rate stayed high. Therefore, you dont have POTS since you didnt recover 

However, this is false. First, the criteria for a POTS diagnosis (as far as i know) is either a rise of more than 30bpm upright, or an increase higher than 120bpm, WITHOUT blood pressure change. (Dysautonomia International, Vanderbilt, Johns Hopkins). And second, there ARE treatments for POTS even if your blood pressure doesn't decrease. 

I asked for a copy of my TTT and got it. Here are the results :

Before tilt (30 minutes laying down) : 90 bpm, 155/83
1 minute after tilt : 129 bpm, 158/90
2 minute after tilt : 121 bpm, 164/101
3 minute after tilt : 123 bpm, 171/86
7 minute after tilt : 112 bpm, 163/92
10 minute after tilt : 113 bpm, 157/100
12 minute after tilt : 119 bpm, 156/96
15 minute after tilt : 118 bpm, 160/95
17 minute after tilt : 125 bpm, 154/98
19 minute after tilt : 125 bpm, 171/97
After tilt laying on the table : 121bpm, 159/87

What are your thoughts on all this? He suggested i have anxiety and "anticipate" me standing. This is false. Im not scared of frickin standing, i feel out of breath after a flight of stairs, exercising is possible but hard, im dizzy all day, i have shortness of breath, im cold then hot 1 minute after the other, sometimes eating cause me to have nausea etc... Im not creating all this. I had the best possible life before all this happened. Why would i ruin it and be anxious about it?? 

Should i just contest and be my own advocate or just quietly stay in a corner and suffer in silence? 

[Jwarrior77]

I know how you feel. I did my TTT test months ago and this was the findings: 

Supine 5 min: 85 bpm, 131/85

Supine 10 min: 90 bpm, 128/78

Immediate Tilt: 122 bpm, 138/92

Tilt 5 min: 108 bpm, 131/83

Tilt 10 min: 115 bpm, 119/75

Tilt 15 min: 115 bpm, 130/80

Tilt 20 min: 146 bpm, 103/78

After tilt resting: 121/96 (they didn't record my hr for whatever reason)

They aborted it after 20 minutes because I felt nauseous and lightheaded. I asked the nurses after the test was done and they thought I had POTS. This gave me a sense of relief and validation. However when I talked to my cardiologist about the results he was very irritated/angry as if I was wasting his time and said I basically had 0% chance of having it. He claimed it was just "anxiety". He said the reason why my blood pressure dropped at the 20 minute mark was because I was "dehydrated". He also said because I didn't have these symptoms for more than 6 months at the time I didn't have it. Well guess what I have had this for well over 6 months now and im only getting worse.

Honestly hearing this from so many Doctors really gets me angry. I have so many videos of my pulse ox showing my resting HR in the 60s jumping up in to the 120s. With POTS it's not a one size fits all criteria. Some people have dramatic increases in hr with it going up into the 170's when standing. Some don't. Some people have blood pressure drops. Some people have an increase in blood pressure. Some people's BP doesn't increase. Some people faint and others have never fainted like myself. If I'm missing something here mods please correct me. 

As for your question I believe you have POTS and I think your doctor gave poor reasoning to why he thinks you don't. I think you should keep contesting. I'm trying so myself as well but I'm just so weak and tired and sick of doctors not believing that these symptoms I have are very real. 

 

[DizzyPopcorn]

2 minutes ago, Jwarrior77 said:

I know how you feel. I did my TTT test months ago and this was the findings: 

Supine 5 min: 85 bpm, 131/85

Supine 10 min: 90 bpm, 128/78

Immediate Tilt: 122 bpm, 138/92

Tilt 5 min: 108 bpm, 131/83

Tilt 10 min: 115 bpm, 119/75

Tilt 15 min: 115 bpm, 130/80

Tilt 20 min: 146 bpm, 103/78

After tilt resting: 121/96 (they didn't record my hr for whatever reason)

They aborted it after 20 minutes because I felt nauseous and lightheaded. I asked the nurses after the test was done and they thought I had POTS. This gave me a sense of relief and validation. However when I talked to my cardiologist about the results he was very irritated/angry as if I was wasting his time and said I basically had 0% chance of having it. He claimed it was just "anxiety". He said the reason why my blood pressure dropped at the 20 minute mark was because I was "dehydrated". He also said because I didn't have these symptoms for more than 6 months at the time I didn't have it. Well guess what I have had this for well over 6 months now and im only getting worse.

Honestly hearing this from so many Doctors really gets me angry. I have so many videos of my pulse ox showing my resting HR in the 60s jumping up in to the 120s. With POTS it's not a one size fits all criteria. Some people have dramatic increases in hr with it going up into the 170's when standing. Some don't. Some people have blood pressure drops. Some people have an increase in blood pressure. Some people's BP doesn't increase. Some people faint and others have never fainted like myself. If I'm missing something here mods please correct me. 

As for your question I believe you have POTS and I think your doctor gave poor reasoning to why he thinks you don't. I think you should keep contesting. I'm trying so myself as well but I'm just so weak and tired and sick of doctors not believing that these symptoms I have are very real. 

 

Grrr im sorry you're having the same response as i do. I have an appointment with my GP tomorrow and intend to defend my point with the results from the TTT and diagnosis criteria that i printed off of websites. I hope she believes me. 

I hope as well that you find a doctor who believes you. Nothing is worse than feeling like trash and no one listen to you

[Pistol]

9 hours ago, DizzyPopcorn said:

Should i just contest and be my own advocate or just quietly stay in a corner and suffer in silence? 

We should always be our own advocate because there are so many uninformed and/or ignorant physicians when it comes to dysautonomia related issues. I also had to deal with several physicians ( including university cardiologists and EP's ) that misinterpreted my TTT's and told me it is "all in my head", despite the obvious facts of the numbers on the TTT's. I did not find proper diagnosis and treatment until I saw (after 1 year waiting period) an autonomic specialist. 

In my case I fired all of the incapable docs and stuck with the ones that listened to me ( mostly my awesome PCP ). Dysautonomia is not a mathematical equation where you strictly go by numbers, especially if the numbers add up. IMO any doc that does not consider the whole patient, numbers and symptoms and all, is not capable of giving a correct diagnosis. 

[yogini]

You're right. The criteria for POTS is an increase of 30 bpm which it looks like you had.  There are many doctors out there who know just enough about dysautonomia to be dangerous.  Having had some terrible doctors the best thing you can do is cut your losses and move on to the next one.   A person who half understands POTS and screwed up the diagnosis will probably screw up your treatment too.  You were smart to get a copy of your test, which you can use with other doctors.

 

[DizzyPopcorn]

Thanks all for the responses, i appreciate it. 

My PCP diagnosed me today when i showed her my TTT.  I even printed the diagnosis criteria from dysautonomia international etc. I think she was annoyed a little bit with me. 

I'm still sad that i have to "twist arms" at doctors. They make me feel like im looking for drugs or something, while the only thing i want is to know what i have and feel better, thats all. 

Anyway, now that i have pots, im not sure where i should start. Guess ill read the stickies. Water, salt and exercise is the basic, right? 

[Pistol]

13 minutes ago, DizzyPopcorn said:

Anyway, now that i have pots, im not sure where i should start. Guess ill read the stickies. Water, salt and exercise is the basic, right? 

I am glad you at least got a diagnosis. I had to see an autonomic specialist out of state to get proper treatment. Good luck!!!!

[WickedMindz]

That does not mean you don't have it.  When I had mine my blood pressure stayed the same as well as my heart rate it was then when they gave me nitroglycerin and tilted me up that I went unconscious and the doctor told me my heart rate spiked and then my blood pressure dropped and then my heart rate dropped.  He diagnosed me as Vasovagal Syncope which according to him is a form of POTS. Also went into Atrial Fibrillation when I came back too, talk about scary stuff. I am a 35 y/o male.

[Photon]

I had all of these symptoms as well and I also failed the TTT. Taking Ivabradine was the beginning of the way to recovery for me.