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Well I made it exactly 48 hours with no food and had been stuck 28 times when they decided to stop the test, before finding anything significant. They had to stop bc my blood volume was too low to get anymore blood! So now I wait another week before I can see the doc again. GRRRR! she is having me do a 24 hour urine to look at Catecholamine levels.. i've read some about this, but can someone explain it more to me? too weak to do a search. I'm really discouraged and of course now my symptoms are RAGING out of control just due to the stress on my body. Have to go get more blood drawn today, not sure WHERE they're going to get it from. I look like a drug user! I have track marks from so many sticks.. ugh.. it's hard to keep moving forward after being put through the ringer just to go home sick again.. :mellow:

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Oh, so sorry for the rough time you're going through! I just wanted to explain the catecholamine test I had done at Mayo. Catecholamines are the hormones put out in response to stress by your adrenal glands and they are norepinephrine, epinephrine and dopamine. With POTS, our adrenaline kicks in every time we're upright in order to try to keep blood pumping back up to our brains. The adrenaline hormones work to raise heartrate, peripherally vasoconstrict, and cause all the uncomfortable symptoms like sweaty, cold extremities, nausea, palpitations, etc. They should do the test by inserting an IV needle and having you lay in a quiet place for 1/2 an hour or so. Then they'll draw a blood sample. Then you get to try to activate your POTS symptoms by standing, walking, etc. for 10 minutes or so and they draw another sample. It's usually our norepinephrine level that raises the most on standing, and with POTS levels of 600 or more are common. Of course, the supine levels are much lower.

For me, this test didn't really help by directing any treatment but it confirmed that I do have hyperadrenergic POTS which is why I feel the way I do!

I hope you can get rehydrated quickly!

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Glad you're home but so sorry you had to go through that!!! Take care of yourself!!

The 24 hour urine catch for catecholamines at least doesn't require needles or blood! You just have to collect your urine for a 24 hour period. I had this done about a month ago. It measures the amount of the hormones epinephrine, norepinephrine, metanephrine, and dopamine in the urine.

Hope you recover quickly!

Babette

Here I searched for you--(Copied and pasted from http://assets.aarp.org/external_sites/adam.../1/003613.html)

Catecholamines - urine

Definition

Catecholamines are small molecules made by nerve tissue (including the brain) and the adrenal gland.

The major catecholamines are dopamine, norepinephrine, and epinephrine. These substances break down into other compounds, which leave your body through your urine.

A urine test can be done to measure the level of catecholamines in your body.

Catecholamines can also be measured with a blood test. See: Catecholamines - blood

Alternative Names

Dopamine-urine test; Epinephrine-urine test; Adrenalin-urine test; Vanillylmandelic acid (VMA); Urine metanephrine; Normetanephrine; Norepinephrine-urine test; Urine catecholamines; VMA; HVA; Metanephrine; Homovanillic acid (HVA)

How the Test is Performed

For this test, you must urinate into a special bag or container every time you use the bathroom for 24-hour period.

On day 1, urinate into the toilet when you wake up in the morning. Close the container tightly. Keep it in the refrigerator or a cool place during the collection period.

Urinate into the special container every time you use the bathroom for the next 24 hours.

On day 2, urinate into the container in the morning again when you wake up.

Label the container with your name, the date, the time of completion, and return it as instructed.

For an infant:

Thoroughly wash the area around the urethra (the hole where urine flows out). Open a urine collection bag (a plastic bag with an adhesive paper on one end).

For males, place the entire penis in the bag and attach the adhesive to the skin.

For females, place the bag over the two folds of skin on either side of the vagina (labia). Put a diaper on the baby (over the bag).

Check the infant frequently and change the bag after the infant has urinated. Empty the urine from the bag into the container provided by your doctor.

Because lively infants can cause the bag to move, this procedure may take a couple of attempts. Extra collection bags may be necessary.

When finished, label and return the container as instructed.

How to Prepare for the Test

Acute stress and vigorous exercise may affect the test results.

Foods that can increase urinary catecholamines include coffee, tea, bananas, chocolate, cocoa, citrus fruits, and vanilla. Avoid these for several days prior to the test.

Certain drugs can also affect test results. Your health care provider may tell you to stop taking certain medicines before the test. Never stop taking medicine without first talking to your doctor.

The following drugs can increase catecholamine measurements:

Acetaminophen (Tylenol)

Aminophylline

Caffeine

Chloral hydrate

Clonidine

Disulfiram

Erythromycin

Insulin

Levodopa

Lithium

Methenamine

Methyldopa

Nicotinic acid (large doses)

Nitroglycerin

Quinidine

Tetracyclines

Drugs that can decrease catecholamine measurements include:

Clonidine

Disulfiram

Guanethidine

Imipramine

MAO inhibitors

Phenothiazines

Reserpine

Salicylates

How the Test Will Feel

The test involves only normal urination, and there is no discomfort.

Why the Test is Performed

The test is usually done to diagnose an adrenal gland tumor called pheochromocytoma. It may also be used to diagnose neuroblastoma. Urine catecholamine levels are increased in most persons with neuroblastoma.

The urine test for catecholamines may also be used to monitor those who are receiving treatment for these conditions.

Normal Results

All of the catecholamines are broken down into inactive substances that appear in the urine:

Dopamine becomes Homovanillic acid (HVA)

Norepinephrine becomes normetanephrine and vanillylmandelic acid (VMA)

Epinephrine becomes metanephrine and VMA

The normal ranges vary from lab to lab, but in general are as follows:

Dopamine: 65 - 400 mcg/24 hours

Epinephrine: 0.5 - 20 mcg/24 hours

Metanephrine: 24 - 96 mcg/24 hours (some laboratories give the range as 140 - 785 mcg/24-hours)

Norepinephrine: 15 - 80 mcg/24 hours

Normetanephrine: 75 - 375 mcg/24 hours

Total urine catecholamines: 14 - 110 mcg/24 hours

VMA: 2 - 7 mg/24-hours

Note: mg/hour = milligrams per hour; mcg/hour = micrograms per hour.

What Abnormal Results Mean

Elevated levels of urinary catecholamines may indicate:

Acute anxiety

Ganglioblastoma (very rare)

Ganglioneuroma (very rare)

Neuroblastoma (rare)

Pheochromocytoma (rare)

Severe stress

Additional conditions under which the test may be performed:

Multiple endocrine neoplasia (MEN) II

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Wow! Sounds like quite the ordeal! So, I wasn't sure I understood- did they find anything that will be useful to you? If not... that really stinks, to have to do that and not get any info from it!

Are you able to drink water during the test? I would not survive if I couldn't!!! They have talked about making me do this test. So, when you are feeling better you will have to tell us more details about this test.

Hope you recover from all that "fun" :mellow: soon!!!

:)

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Hi,

I am sorry that you had to stop the test early because of the numerous blood draws. I hear you about feeling and looking like a pin cushion. I don't know if this will help you or not, but it might be worth mentioning to your doctor...

One thing my doctor did was write me a standing order for a blood draw for glucose, insulin, and C peptide. I would sit at the blood lab all day waiting for a hypoglycemic episode (I have several a day) and then they would draw the blood when I told them.

I know this won't help if you are trying to rule out an insulinoma, but it might help if your doctor hasn't yet confirmed that your hypoglycemia is due to elevations in insulin.

Just a thought.

Get some rest and lots of fluids. I hope that you are feeling better soon.

~ Broken_Shell :mellow:

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Interesting that you have low blood volume. Was that medically proven?

From what ive read of Dr Stewart from NY's research, the only form of POTS that consistently showed overall blood hypovolumia was Low Flow POTS.

According to his research Low Flow POTS is caused by elevated levels of angiotensin II causing reduced availability of a vasodilator chemical called nitric oxide. This reduced blood flow through the brain and the elevated angiotensin II caused some sort of paradox with renin/ald. He is trialling angiotensin II blockers as a treatment for this form of POTS - and he has done extensive research on it which is on his website.

The term 'hyperadrenergic POTS' is controversial.

The theory goes that its caused by excessive levels of norepinephrine and perhaps epinephrine in blood circulation following orthostatic stress. The theory is the that norepinephrine transporter protein which recycles NE and gets it out of the synaptic cleft is faulty, leaving it there too long throughout the body, resulting in POTS symptoms.

This doesnt explain why even 'hyperadrenergic' patients were shown to have blood pooling in their stomach and pelvis. Too much norepinephrine should result in increased vasoconstriction and very elevated blood pressure, not reduced blood flow and pooling. it could just be that the vasoconstriction results in impaired blood flow and literally chokes the carotid arteries and results in symptoms, but a recent study of hyperadrenergic patients concluded that they exhibited abnormalities that went beyond impaired NE reuptake.

Impaired availability of nitric oxide would also in theory create excessive vasoconstriction and patients with this form of POTS demonstrated blood pooling because the arteries were constricted and reduced blood flow.

Any state where the body preceives that there is reduced blood flow to the heart and brain could result in excessive reflex stimulation of the sympathetic nervous system. A POTS patients could appear hyperadrenergic from any of the causes listed in the causes section of this website.

Research is ongoing :)

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