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Crazycatlady

Got my Hyperpots test back... need help. Very low epinephrine

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Hey guys need some help. My epinephrine is very low in both laying down and standing.

 

laying down:

Dopamine 21 \ 0 - 20 range

Epinephrine <10 \ 10 -200

Norepinephrine 170 \ 80 - 520

 

tilt Test standing

Dopamine 20

Epinephrine <10

Norepinephrine 638

 

thabks Guys.. would love to hear your results

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1 minute ago, StayAtHomeMom said:

I couldn't get my doctor do run this test for me in a way my insurance would pay for it. What has your doctor said about the results? It seems interesting. 

Nothing yet! I’ll update once I get what he says. Just kind of freaked out about the defiency..

 

im sorry to hear that your health insurance won’t cover the test 😕 Always a complete bummer when the system won’t work. Where you able to get other tests done atleast?

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@Crazycatlady It seems like your norepinephrine upon being tilted upright is high though. Norepinephrine and Epinephrine are very similar neurotransmitters and both effect the same receptors, just in slightly different ways. If I remember correctly, norepi is more responsible for things such as maintaining blood pressure whereas epi has more wide-ranging effects. Also, epi is only released during periods of high stress. Were you pretty relaxed and calm during your test? Maybe that has something to do with it. Hopefully you hear from your doctor soon - try not to worry until then! Keep us updated :)

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Epinephrine is meant to be low, and having readings below the threshold is unlikely to be clinically significant. It is good in a way as it helps rule out a phaeochromocytoma (although actually most of us would probably prefer an operable cause!). Your Ne rise is consistent with POTS (possibly Hyper dep on your center's criteria).

I am on the waiting list in the UK to have supine and standing blood catecholamines drawn if I can get health board funding. The problem is I can only stand (or tolerate tilt) for a minute or two, so the doctor didn't think this would be long enough to meaningfully detect a change. Can I ask how long you were upright before your standing bloods were drawn? 

I hope your results point you in the direction of some helpful treatment. 

B x

 

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14 minutes ago, bombsh3ll said:

Epinephrine is meant to be low, and having readings below the threshold is unlikely to be clinically significant. It is good in a way as it helps rule out a phaeochromocytoma (although actually most of us would probably prefer an operable cause!). Your Ne rise is consistent with POTS (possibly Hyper dep on your center's criteria).

I am on the waiting list in the UK to have supine and standing blood catecholamines drawn if I can get health board funding. The problem is I can only stand (or tolerate tilt) for a minute or two, so the doctor didn't think this would be long enough to meaningfully detect a change. Can I ask how long you were upright before your standing bloods were drawn? 

I hope your results point you in the direction of some helpful treatment. 

B x

 

Thank you ! I appreciate the education. This is all new to me. 

Yes, the Tilt Table Test was rough. It was a total of 30 (I only lasted 25) and the blood was drawn 15 minutes in and before they injected me with a drug to increase my heart rate. 

 

If you can only stand to stand (punny...) a minute or two shouldn’t that be enough?? I hope you get moved on the waiting list for some answers 💕

 

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55 minutes ago, Crazycatlady said:

If you can only stand to stand (punny...) a minute or two shouldn’t that be enough?? I hope you get moved on the waiting list for some answers 💕

Thanks, I think the consultant said less than about 10 mins isn't usually enough. I'll give it all I've got though! I just wish it hadn't taken so long to get to see an autonomic specialist - earlier on in my illness I may have been able to stand for longer, especially when licorice root was still working for me. I've thought about asking if I can walk about instead of being strapped to a tilt table to get the upright blood test as I may be able to do that for longer. 

I know when I was at the hospital getting renin and aldosterone levels, they asked me to stand for 15 minutes.  I pointed out that if I could stand for 15 minutes I wouldn't be in a wheelchair, in fact I wouldn't even be there, I'd be running about somewhere jumping for joy!

B x

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4 hours ago, Crazycatlady said:

Nothing yet! I’ll update once I get what he says. Just kind of freaked out about the defiency..

 

im sorry to hear that your health insurance won’t cover the test 😕 Always a complete bummer when the system won’t work. Where you able to get other tests done atleast?

He did a cortisol test and urine catacholmine testing. All normal. 

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@bombsh3ll I had to stand the 10 minutes at a separate appointment from the tilt.  I had nurse on one side and hubby on the other waiting for me to faint but I made it.  It was worth it for the hyper pots diagnosis.

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11 hours ago, p8d said:

I had to stand the 10 minutes at a separate appointment from the tilt.

So it was 10 minutes standing to get the upright bloods, that was enough? If I do get the funding to go back to London for the test I'm going to ask if they can be more flexible and allow me to walk about a little bit in order to have a better chance at being upright for 10 minutes. Some places like their very rigid protocols though! Do you remember how much your NE went up by? Symptomatically I feel that mine is high even sitting and rockets if I try to stand, and I would like to capture that, but I am not sure it would lead to any new treatment options in my case as I've already tried pretty much everything (NHS won't treat POTS with IV fluid).

B x

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I had my catecholamines taken early on ( after just 2 years ). They took them after reclined in a chair for 30 minutes and then I had to walk for 30 minutes around the hospital. Then they took it again. I was elevated reclined ( above 600 ) and walking ( almost 900 ). But at that time I was not symptomatic - who knows how high it would have been when I was having symptoms!!!! My specialist says some people go up to 2000!!!!!!

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3 hours ago, Pistol said:

I had my catecholamines taken early on ( after just 2 years ). They took them after reclined in a chair for 30 minutes and then I had to walk for 30 minutes around the hospital. Then they took it again. I was elevated reclined ( above 600 ) and walking ( almost 900 ).

Was that at Dr Grubb's clinic? If so it might help me argue for a similar adapted test in London. At least your supine levels alone gave useful information in that they were elevated. I've decided definitely to ask for walking or at least independent standing. I have an absolute phobia of being strapped to another tilt table, that was the worst experience of my life when I had it done in Edinburgh, and it was of no benefit to me whatsoever as it was reported as "normal" despite a HR of 154 and BP of 170/110. They then deleted the test data (or said they had) so I couldn't take it elsewhere for a second opinion, delaying my diagnosis of POTS by another year until I got to Prof Newton. 

B x

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Yes, I stood for 10 minutes. If remember correctly NE hit somewhere in the upper 600s, range was to 400.  

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19 hours ago, p8d said:

Yes, I stood for 10 minutes. If remember correctly NE hit somewhere in the upper 600s, range was to 400.  

Did you have it measured supine first and do you remember what that level was?

B x

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My doctor did not take supine blood.  He only drew blood after 18 minutes into tilt.  My NE was 1962 ng/dL, which definitely put me into hPOTS territory.  But I also have symptoms consistent with low blood volume and overly stretchy veins.  The going hypothesis is that NE gets so high in response to these other failures.  But anyway, there is another data point for you.

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Yes, I had to lay supine for 30 minutes then stand for ten.  It was three years ago and I was very, very ill so my memory isn’t the greatest of anything much then.  

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Thanks for sharing your experiences - it sounds like each place does it differently!

I can sometimes walk for 10 min but not stand in one place - I think the walking option for me is the best chance at getting an upright result even if it's not perfect.

B x

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@bombsh3ll - I also can walk better than stand, so that is why I could do the upright portion of the catecholamine testing. 

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