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Hyper Pots And What Treatments Do You Use?


kitt
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I've been researching Dinet and the web trying to determine what meds people are using for hyper pots.

It seems many of us with hyper pots also have mca or suspected mca.

What H1 and H2 blockers do you use, and has Clonodine, Gastrocrom, or SSRI's been helpful? If so what dosages?

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Btw, I just went by the hospital lab to pick up a copy of my labs.

My norepinephrine (NE) level was 1419. (normal range is 80-520).

Epinephrine is <10 (normal is 10-200)

Dopamine high at 36, (normal range 0-20)

Metanephrines 0.12, within normal so no pheo.

Hyper-pots people, please give me your feedback and experience. I see my cardiologist on Tuesday.

Thank you!

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With mast cell issues it limits is in what we can take. Some seem to find clonidine or gauifacine to be of help. The mast cell protocol can also help with the surges (at least it does me). I'm super sensitive to meds and have to rotate on and off things. There is a lot of trial and error with this and when mast cells are involved it complicates things even more. I'll PM you some more on this.

Issie

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Kitt I'm confused was your blood drawn for the test when you were laying down, sitting up or standing?

The proper way is to have you stand at least 10 minutes in a quiet area with no distractions like ppl or even TV. If they took it while you were sitting like they do any blood test, you need to have it taken laying down or do a 24 hour on ice urine catch because pheochromocytoma patients have high NE too but all the time not just standing for 10 min..

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Yep, Rich stated what I was going to say. When testing for a pheo, they usually have you lie down for 20 minutes or so, but often they just have you go into a lab and do blood draws. With your norepinephrine 3x the upper limit and dopamine above the upper limit, I would think a work-up by an endocrinologist would be a good idea.

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Thanks Sue and Rich,

The cardiologist did check for a pheo. The metanephrines and normetanephrines are within the normal range.

THe test was done standing up at 8:00 a.m. fasting.

Then endocrine workup makes a lot of sense. I have Hashimoto's so have had continuous workups with endocrinologists over the years.

The blood level of cortisol was within normal limits on this test and in the last year I had a more complex cortisol testing at the hospital. They draw blood, , inject ?, (don't remember what it's called), wait 45 minutes then draw blood again.

I understand the correct way to do the test is as you explained. I explained why it wasn't ordered that way on a thread called 'Dr. Grubb and hyperadrenergic pots.' (i think the nurse didn't type the script correctly.)

Yes, the NE is almost 3 times 2 high. I've read it can go as high as 2000 with hyper-pots.

I don't understand is why the epinephrine is so low! Does this make sense to anyone, or does everyone else have this kind of result too?

Thanks for your help! I see the cardiologist Tues. and am trying to put questions together. (He's also board certified as an internist, though practices cardiology only.)

Thank you again.

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My epinephrine has always been low for my many testings for pheo. I think a 24-hour urine would give a complete picture. My understanding is getting a high norepi. when looking at it in context to hyperPOTS means that the level will be elevated after standing, when the adrenaline system kicked in to help the blood flow(well, it thinks it's helping *roll eyes*). Maybe that 24-hour urine would let them see what happens over extended time.

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Sue, the doctor mentioned something about a 24 hour urine test, but I think he's referring to MCA testing. Hard to catch mca in a plasma draw, because you need to go to the lab when you're having an episode.

Sue, why do you think a 24 hour urine is necessary to get more info for hyper-pots? Thought because the metanphrines were normal, that rules out pheo? I'll ask him about it if you can tell me why it would be helpful.

Have that 'hit by a truck' feeling. Completely not able to do anything. Exhausted, etc...

I was reading old posts and found this on dinet from 2010. Any thoughts? Especially about Methyldopa and phenobarbital.

Copying and pasting below:

This is Dr. Grubbs recommendations for hyperadrenergic POTs if that is what you end up diagnosed with:

In the hyperadrenergic form of POTS, patients often respond best to agents that block norepinephrine or its effects. One agent that is particularly helpful is clonidine HCI in either pill or patch form. We start the oral form at 0.1 mg PO 1 to 2 times a day and filtrate upward. The patch form of clonidine is quite useful because it provides a constant and continuous amount of the drug for up to 1 week at a time. The combined and β blocking drugs labetalol and carvedilol are quite useful in some patients as pure β-blockers may exacerbate symptoms (because of unopposed receptor stimulation). Methyldopa has been reported to be useful in some patients, as has phenobarbital. In addition, both the SSRIs and norepinephrine reuptake inhibitors are useful in select patients.

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Hey, kitt, Your numbers are for sure off and imho have not ruled out a pheo. If your supine norepi was also that high it would point to a pheo, especially if it didn't change from supine to standing. I think I'd be going back to my endocrinologist on this one. The cortisol and other test you described acth stim test are looking at your adrenal function to see if you have an active adrenal nodule/pheo or addison's disease, etc. I don't understand why a cardio is doing these tests, as an endo would be more equipped to deal with this as it is their specialty.

This is why the postural comparison is so important. If it is changing with posture, less likely to be a pheo, but it also doesn't rule it out. The low epi and elevated dopamine also may point to something. I think that you endo is probably going to want to do further investigating on this. Only good thing about a pheo is it is curable once it is removed. I almost which that had been my solution, as I do have an adrenal nodule.

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Thanks Arizona girl,

I'm confused by the reactions. He also measured metanephrines. They were all normal. Meta tests are the primary way of checking for a pheo. Here's a wikipedia link to metanephrine http://en.wikipedia.org/wiki/Metanephrine

Or read this (pasting) An article in the Journal of the American Medical Association, 2002, indicated that the measurement of plasma free metanephrines is the best tool in the diagnosis of pheochromocytoma, an adrenal medullary neoplasm.

All metanephrines are within the normal range, done at the same time as the other tests mentioned.

An endocrinologist did order the acth stim test earlier this year, but the cardiologist added cortisol to this lab order. (normal)

I have read that elevated dopamine is associated with poor sleep function...Check!

Actually I would have preferred a pheo, exactly because it can be removed. I think most of us would prefer that?

This cardiologist, (also board certified as in internist) may suggest more testing, but I've read of people with hyper pots having NE as high as 2000. (Not common, but guess it can happen.)


I agree the test should have been done supine and standing, but the standing NE result is compelling. I'll ask him about it though.

What kinds of results did other people with hyper pots have with NE, dopamine etc..?

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Oh how I wish I would fit a normal diagnosis of something too! I am forever the square peg trying to fit in a round hole. I getcha on the endo's relying to much on the lab gospels and not on symptoms. I do think that the 24 hour urine for pheo should be ruled out, I had that done as well. Just make sure they check for everything in it. Also my cardio says the 24 saliva cortisol test is the best one to determine cortisol issues. Are they also keeping an eye on your aldosterone and renin considering the addison's comment by your doctor.

I have hashi too diagnosed finally this year. Synthroid lowered my tsh, but my t3 has not budged and I'm actually having more hypo symptoms then before, my eyebrows are fading away. How are they treating your hashi? I also have mthfr gene defect, lichen and undifferentiated autoimmune disease, cvid, and pcos with high insulin. The genetic doc I just saw says I have joint hypermobile syndrome too. AHHH! Though it appears some of these things can be symptoms of the other stuff, so all related in a way.

I did have the cat testing you did posturally per dr. grubb. My norepi was in the 1200's on standing from the 400's supine, my supine epi was slightly elevated and didn't budge on standing and I had no measurable dopamine in either position. I also had low mets. Has anyone ever addressed anything but the standing norepi??? That would be a big fat no, and I wonder about their contribution to my symptoms. My neuro after the positive tilt and high cats did a skin biopsy that showed small fiber neuropathy probably causing the pooling and the elevated norepi in response.

Dr. Grubb had recommended the clonidine, but I'd already been on the patch form and had skin reaction to it, moved to the pills and had an almost addictive body response to it, my body keep needing more and more to keep bp/hr down. Rather scary and coming off of it was even scarier. The short acting low dose labetalol has been the best one so far for me.

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Hi Kitt,

My supine NE was 1400, standing 3400. I also have severe hypovolemia (by blood volume testing at Mayo) due to the elevated catecholamines. I take florinef and high salt as well as high doses of clonidine (patch and pill forms). I also have antiphospholipid syndrome (an autoimmune clotting disorder) and Professor Hughes who first described this syndrome in the 1980's believes my autonomic trouble is due to APS. I have hypergammaglobulinemia, elevated total IgM, and my APS antibodies are both IgM. I am being tested for antibodies to the adrenergic receptors. Four weeks ago, I started IVIG. Because of the hypercoagulable state, I am getting this slowly. I not yet had any benefit, but it's too soon to say.

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Hyper, Hi I'm on ivig too! I have cvid with low igg and igm and the associated autoimmunes often found with it. Have you been on primary immune.org. They talk about hyper igm on there. So aps too! Have they tested your genetics for mthfr and factor leiden v?

These are found with aps too. With mthfr your missing the enzyme that converts folic acid and leads to some of these symptoms and conditions. Treatment is L-methyfolate and active b's.

How did your first ivig infusions go? My first one was awful, but the switched brands after 4 months and I do okay now, just a headache now. It took a while for improvements to show up and mine has to be done monthly to maintain everything. I had pheresis first and actually responded faster to that, but that is hard to stay on long term.

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Hyper, what test tests for antibodies to the adrenergic receptors?

BTW, I am heterozygous MTHFR and have a mutation for Factor II(prothrombin). I messaged the genetics doctor that I saw once who didn't seem too enthused for my visit to ask him if any of this new info from 23andme was pertinent. I haven't heard back and it's been 10 days since I sent it. Ugh. So, I don't know what any of this means, if anything, about my tendency to clot or not.

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I've been searching old threads on Dinet, and there is some interesting information!

One thread is about Snri's and hyper pots. Has anyone had success with any anti-depressants lately? Here's a link to that forum thread.

It's a slightly older thread and I wonder if anyone will share their current experiences with snri's and ssri's. Anything helping anyone?

Also, this thread..http://forums.dinet.org/index.php?/topic/14028-hyperadrenergic/

I'll quote the writer, but won't add her name although it's a public post. She writes:

My supine norepinephrine was 250 and standing was 1089, and the mayo neuro called my mildly hyperadrenergic just to let you know. My heartrate usually doesn't go above 150 when I stand. When my BP spikes, my heartrate is often 60 lying and standing strangely enough, but it's during these times that I feel absolutely horrible.

Much written on older threads about the difference between Vandy's and Dr. Grubb's definition of hyper pots, (NE above 600) and the Mayo Clinics definition. They stated the above person had 'mild hyper pots' with a standing NE of 1089. So clearly they have different opinions on what constitutes hyper pots. Decided to reread the brand new Mayo paper on pots.

Just reread the new Mayo paper Issie posted on another thread, and Mayo now divides hyper pots patients...saying between 30 and 60 percent of pots patients have hyper pots with standing NE of >600 and later in the next sentence says 5 to 10% of hyper patients have standing NE between 1000 and 2000. I'm paraphrasing somewhat, they add other characteristics to each sub group.

Interesting. Did anyone else read that?

Mayo also has long held a strong viewpoint about pots having an auto-immune connection, and Vandy and Dr. Grubb were not on board with that either. Haven't gone digging in Mayo's new paper for more on that, but I suspect they're going to stay with that line of reasoning.

Would be really interested in knowing if anyone has had any luck with anti-depressents for hyper pots. I tend not to be able to tolerate them, although I could take zoloft for some reason.

Thanks for all the excellent information!

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