MIBG/SPECT Scan shows NO Pheo. So Why the high NE and Dopamine?

[Kris4444]

Hi All,

Yesterday I had an MIBG/Spect scan done. I got the results this morning and they were negative for any tumor. The reason for the test was high levels of norepinephrine as well as high dopamine. I was having pretty severe attacks when exercising or riding, vertigo, heavy sweating, tremors, flushing. Since starting a beta blocker some of the symptoms have greatly improved but I'm still having issues on days where the weather is hot.

Any suggestions for what else, besides a pheo, can cause high levels of catecholamines? Is this just the way I'm wired? Thanks.

[statesof]

Has your doctor offered any insight into this? Or any other test/ diagnosis was to exclude other possible causes?

[Kris4444]

He hasn't said a word regarding the MIBG. He has mentioned NET deficiency. Supposed to be trying to get blood to specialist at the NIH but that has been in the works for months. Beta blockers have been really helpful but still having issues. I'm getting really discouraged.

[SarahA33]

Hi, Kris,

I have great relief from my BB -- propranolol, because I have high levels of NE, also. My understanding is that BB's are beta adrenergic blocking agents, a type of med that block the body’s normal  response to stress. I had a doctor once explain that it basically blocks adrenaline and mutes the sympathetic nervous system,they're particularly useful by blocking the physiological symptoms and minimizing the pounding & rapid hr's, tremors, cold sweats, etc.

The other medicine that has been useful for me is Clonidine, as it decreases activity in the Central Nervous System. Here is a really good article: http://www.healthrising.org/treating-chronic-fatigue-syndrome-mecfs/drugs-for-chronic-fatigue-syndrome-mecfs-treatment/clonidine-kataprex-nexiclone-duriclone/

http://www.dinet.org/index.php/information-resources/pots-place/pots-mechanisms - - Link to our DINET Site that discusses OI & Mechanism's

The following excerpt is from Dr. Raj's newest paper, Postural Orthostatic Tachycardia Syndrome: Beyond Orthostatic Intolrance.  He mentions elevated Cat Levels w/ the hyper form. Have been diagnosed?

"Central Hyperadrenergic POTS

Although the elevated sympathetic tone in POTS is often secondary to another pathophysiological mechanism, such as neuropathy or hypovolemia, it can also be the primary underlying problem [19]. Furlan et al. reported increased sympathetic tone in patients with POTS [52]. Resting sympathetic nerve activity, measured by microneurography, is elevated. A spectral analysis index of sympathetic function and plasma norepinephrine are sometimes higher at supine rest and increase more with HUT in POTS [52, 53]. Plasma norepinephrine levels should be determined in patients with POTS while in steady state in the supine and upright positions (at least 10 min in each position). When measured during upright posture, norepinephrine is elevated in many patients with POTS (>3.55 nmol/L (600 pg/mL) and sometimes >5.91 nmol/L (1000 pg/mL)), consistent with the sympathetic neuronal activation elicited by standing in these patients [19]. This is sometimes used as a criterion for the “hyperadrenergic subtype” of POTS."  http://link.springer.com/article/10.1007/s11910-015-0583-8/fulltext.html

 

 

 

[Katybug]

Hi Kris,

I was just reading this article because I'm trying to understand the mechanism mestinon has on treating POTS. I remembered your question I  this post as I was reading and thought this article might help your understanding of the norepinephrine, etc.. It's longish but a good read. The sections on Lab abnormalities, differential diagnosis, and pathophysiology are of particular interest. Hope this helps!

Talk soon,

Katie 

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1501099/

[Lily]

It is my understanding that in some people there is a deficiency in the natural re-uptake of norepinepherine, so you always have too much (NET deficiency).  In other people the blood pooling or low blood volume cause the body to crank out more and more NE in an attempt to force the blood back up into the upper body. 

[Kris4444]

Thanks everyone. I will check out the links you provided.

Lily, NET deficiency was mentioned by my doctor as a possibility. I was told by another doctor that NET deficiency would show up on the MIBG as a lack of cardiac uptake of the MIBG iodine. When I asked my doctor about this he said they weren't looking for cardiac uptake, rather catecholamine secreting tumors and thinks that I'd have to have the test done again to determine cardiac uptake. Not sure about this. Waiting on other doctor's opinion. Hopefully the two of them can talk to each other and figure this out. I'm sick of all of it.

[Lily]

My NE during upright tilt was 1962 picograms per deciliter (or whatever the units were), but dopamine was normal.  The fun has been trying to decide if I have high NE because my body overproduces it in an effort to deal with blood pooling (which you can see happening), or if my ADHD meds have something to do with it.  Strattera is, after all, a NE reuptake inhibitor.  I somehow manage to have low NE in my brain synapses and at the same time too much in the peripheral nervous system.  The doctor did not take a before-tilt blood sample, so we don't have enough data to rule out anything. We can only speculate.

[Kris4444]

In 2013 when they tested me at Mayo and my NE and dopamine were high, I was taking an SNRI called Pristiq for bowel issues. They said that could be why my levels were high. I stopped taking it immediately but then could not find a way to get retested and Mayo didn't want to retest me. A new center opened up near me and in January of this year I had the catecholamines rerun after being off the med for 3 years. I am on no other medication that would cause high levels of either. My NE was still high (almost 1,000) and the dopamine was triple what it should be.

I've researched high dopamine and it must be pretty rare because there is little literature available on it. My new doctor said it can be related to my diet but I have gastroparesis so my diet is pretty limited. There are lots of articles about LOW dopamine as that is what causes Parkinson's but not much on high dopamine. No one seems concerned about it so I guess it's no big deal. The high NE is what is causing the high heart rate, bp, flushing...more worried about that and the beta blocker seems to help but the question is still WHY?  Guess it's time to just accept that this is how I am now and be happy that some of the symptoms have gotten a bit better with the medication.