Need Help With My Test Results!

[Gemma]

Hello all. I just got my results back from the clinic that I recently visited. I really need help understanding it. If anyone understands it please respond.

So, this is what it says:

My plasma volume test showed that my red cell volume is slightly decreased, but total blood volume and blood plasma is minimally increased as compared to ideal but remains within normal range.

The catecholamines (NE) are normal supine but mildly elevated on standing.

Recommendation says to investigate anemia. Also says that increased water, salt and fludo can decrease some standing symptoms but my laying down and sitting rocky boat feeling will not be helped by those.

Qsart is normal also, so was told no small fiber neuropathy. ( is this test enough to eliminate small fiber neuropathy or need biopsy?)

Also, my ANS test showed normal.

I am so confused. Looks like most of my testing is within normals, exept the NE levels, but I still experience a lot of dysautonomia symptoms.

My local neurologist says that he is looking more at my symptoms then testing and based on symptoms and on catecholamines test I do have dysautonomia. He thinks I have Hyperadrenergic Pots.

If anyone understands what all of this means please let me know. I am so confused why I am showing negative on tests, but have all the symptoms of POTS. My autonomic testing showed negative two times already. Also on a tilt table test a year ago, i never fainted and i think my HR went above 100 only a little bit. Maybe I should ask them to redo it.

[krystal]

were u nervous when they drew blood? perhaps that's why ur catechalomine was high

[Gemma]

No, not really.

So, if all testing is negative exept catecholamines, could it mean my problem is not autonomic dysfunction but something else. My local doctor that I see (not so local 2 hrs away), says that he disagrees with the clinic i visited, because testing can show false negative. He says my symptoms and signs do represent POTS. But I could have had a good day on the day of the test.

Its very confusing when testing shows negative but have all the symptoms of POTS. Sometimes I am questioning anxiety, especially when most doctors that are unfamiliar with POTS says its just anxiety. However my life was totally stress free for the past year. I took a leave of absence from school for a year and just stayed home.

So, my question is, can I still have POTS even though most of my tests are normal, exept catecholemines, but I do have all symptoms.

Thank you everyone.

[Andrie]

Have you ever had a positive TTT? It is possible that you have something going on other than POTS or another form of dysautonomia. Have you monitored your HR at home and gotten orthostatic tachycardia?

It is very frustrating to feel ill and not know the cause.

[Gemma]

Yes I do monitor my BP and HR at home. It does drop to around 85-95/50-60 upon standing and HR goes up over 110. This especially happens in the morning when I wake up and start walking. I get palpitation, fatigue, hard to breath and all other POTS symptoms. All my doctors say that is what I have. However, my testing at this clinic (not sure if I can mention the name), showed negative. Only my catecholamines were high upon standing. A doctor that I see in NY for POTS says that he believes I have it and all my symptoms and signs show for it. I had many times recorded low BP at doctors visits as well.

I think I need to ask my cardio to redo the Tilt table test. Mine was done over a year ago when I was just sick for like 2-3 month. I never fainted, but started to feel faint with nitro pill. I do not know all the recordings from it, but report says, Positive TTT for vasovagal response with introduction of nitro pill. They were looking for orthostatic hypotension back then not POTS.

I don't know what else could be causing my symptoms. I was checked by everyone already, 5 different cardiologist who all think its POTS related, neurologists, rheumatologists, endocrinologist, pulmonologist.

I don't even know where else to go and what tests I should ask for.

Is it possible to get negative results on autonomic testing but still have POTS. I also want to mention that I was feeling relatively good that day when they did a test.

Thank you all for support.

[Katybug]

I can't interpret your test results, but, just as an fyi, you don't have to pass out during a TTT to have it be positive for POTS. Only the rise in HR of +30 BPM from supine to upright in the forst 10 minutes of being upright, or, a HR that goes over 120 BPM when upright.

[lulusoccer]

I wanted to say it's actually GOOD that your Autonomic Function Tests were negative. Those tests generally are negative for people with POTs. Those are looking for different autonomic nervous system dysfunctions such as autonomic failure..ect. You actually want an intact autonomic nervous system. They do those tests to rule out a different condition that could have symptoms similar to POTs. When you were at this facility did they re-do your TTT? If so, did they say you had POTs from that test? (Although, I guess part of the ANS testing is generally a TTT, so did they say your TTT was normal as well?)

When you check your HR at home is it usually pretty elevated? >30 bmp from your lying down HR? (And it needs to stay elevated, not just rise for a few seconds and then go back to normal). That needs to happen for it to be positive for POTs. The BP doesn't matter as much because some people have low, normal, or high

[Chaos]

I was told at one of the major clinics that at least 50% of POTS patients have normal autonomic reflex screenings including normal QSART. That doesn't mean you don't have POTS though. Like others have said, the diagnosis of POTS relies on the HR increase along with clinical symptoms the patient reports. If your docs (including one who specializes in POTS) feels you have POTS, you probably have POTS.

[Gemma]

Hi everyone. Thank you for reply.

Lulusoccer. Yes my HR does increase by more then 30 bpm upon standing and it stays that way. Although it is worse in the morning, towards the evenign it gets better something. My sitting and laying HR is around 60-80 and my standing goes up above 110. However on my good days my standing could be in high 80s, but this doesnt happen often. Also my BP epesially systolic drops to high 80s or low 90s. Is it possible with POTS to sometimes have good days when HR doesnt go up as much.

I also noticed that when i stand in one spot HR goes up more then when I move around. The hardest is standing in one spot.

And no they didnt redo the TTT for me. They did autonomic function test, where I laid on bed, then did breathing in tube for Valsava, then brought table at 70 degrees and stayed there for 10 minutes. This one was normal, but I was also feeling normal during this test . Also, the technician kept on having converstaion with me thruout the test, could it change the results? Was i supposed to stand still and not talk?

Also, my blood volume was mostly within norm range. But my cathecholemines test showed some abnormality. These are the numbers:

Laying Epi 20pg/ml (norm 10-200), NE 446 (norm 80-520)

Standing Epi <10 (norm 10-200), NE 792 (norm 80-520)

So, as I understand it, my Epi went down a bit and my NE went out from laying to standing. Does anyone know what it means? Is this what happens in POTS patients. Also, based on this will SSRI be a good fit med. My doctor here locally said that based on Blood volume tests it looks like fludo will not help much with my syptoms. He suggested still wated and salt. First he put me on calcium chanel blocker to help with chest pains and see if its related to vasospasms and also said will help with my HR, i take Verapamil. If this doesnt help I will try birthcontrol pills to see if its hormonal, although my hormons are normal but there are slight abnormalitis with progesterone. Now, if those dont help them will try either zoloft or paxil. But my concern is, if my NE goes up upon standing can I take SSRIs? The doctor at the clinic where I went didnt suggest anything at all. She basicly just wrote me off based on my negative autonomic function test. 15 hour drive and over $1500 in spending for hotels and gas was waisted. But at least I got to do the tests. But now do not know what to do with them and the doctor from that clinic is not even calling me back to go over them and the manager is ignoring my calls as well.

If anyone can make any sence of this, please respond. Also I am thinking if asking my cordio here locally if he can repeat TTT, is there any specific I should ask for or just regular TTT?