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    Old 06-01-2007, 08:32 PM   #1
    tamlis
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    Unhappy Testing for Pheochromocytoma?

    I have hypoT and have been taking Levothyroxine for about 1 year. This past 6 months or so I have had alot of trouble with symtoms that felt like HyperT. I have epsidoes where my BP spikes, my heart races from 105-160, my face flushes and I sweat like crazy and I get an instant headache and trembling. The doctor decided to do a urine test when I went in complaining again and she said my Cathecholemines were 93% (They said normal was 7-65%) and my Ephedrine was 97% (normal 9-74%). So she sent me to get a test for Metanephrines. I read they do this test with a 24 hr urine or blood test and when I went in there the tech said all I needed was just one small container of urine and thats it. She said they would have to send it off for testing and didnt know when it should be back.

    Does anyone know how long it takes to get these kind of tests back and if there is another urine test they do besides the 24 hr one?

     
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    Old 06-02-2007, 12:10 AM   #2
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    Re: Testing for Pheochromocytoma?

    There's a couple different tests but the gold standard is the 24 hour urine Metanephrines. It must have acid in the jug to keep the ph adjusted. I had to do it twice because of this little oversight. Sample went in on a thursday, report was back on monday. Mine was normal. Long ridiculous story which I will not go into here. Suffice it to say, the endo was an idiot but it did give me a chance to learn a little about the subject.

    The test that uses a small sample tests for Creatinine; metanephrine; metanephrine:creatinine ratio. They use the ratio and if it is >2.2 μg metanephrines/mg creatinine it is supposed to distinguish pheochromocytoma from normal.

    Good luck,
    Helen

     
    Old 06-02-2007, 02:29 AM   #3
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    Re: Testing for Pheochromocytoma?

    Thanks Helen for replying.

    You mean if the ratio is >2.2 (and higher or lower?) means theres a good possibility you have one?

    Why would they not give me the 24 hr test if thats the standard?

    I don't know if you know the answers to these questions either, but I do appreciate any info you can give me.

    (Its all so confusing to me)

    Last edited by tamlis; 06-02-2007 at 02:30 AM.

     
    Old 06-02-2007, 02:55 AM   #4
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    Re: Testing for Pheochromocytoma?

    > means greater than. And a ratio greater than 2.2 means that it is highly likely.

    Here's a couple links that I found helpful when they tested me:

    [url]http://www.emedicine.com/med/topic1816.htm[/url]

    [url]http://en.****pedia.org/****/Pheochromocytoma[/url]

    It is very confusing but, basically, a pheochromocytoma is a tumor on the adrenal gland that puts out catecholamines (adrenaline). It can cause symptoms such as yours and is often checked when someone has the bp spikes and the headache and symptoms that appear to be related to an excess of adrenaline. I really didn't have the symptoms so why they checked is beyond me. I've also been on beta blockers for the last 16 years so if I did have one, I'd probably be dead. I think you will find in your reading
    that you can not give someone with one of these tumors beta blockers or it's going to cause major problems. lol

    So, in answer to your why? Who knows? I've stopped trying to figure out doctors' logic. I find the best thing to do is educate myself to the point where I can question the method to their madness. Read and learn. If you don't understand something you've read, just ask. I've been reading this type of stuff for a long time and can pretty much decipher a lot of it.

    Helen

     
    Old 06-02-2007, 03:04 AM   #5
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    Re: Testing for Pheochromocytoma?

    Thanks Helen.

    My doctor gave me Inderal when I saw her last week, mainly because I wanted something for my racing heart and you say that can be bad for someone with that kind of tumor? (I just now started taking them)

     
    Old 06-02-2007, 03:25 AM   #6
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    Re: Testing for Pheochromocytoma?

    If you have pheochromacytoma, you should never take beta blockers unless they have first controlled the situation with alpha blockers. Beta blockage without alpha blockers can cause the bp to go totally out of control.

    I really would call the doctor on this one. If she really does believe you have this problem, I really wouldn't take them if I were you. I'd contact her as soon as possible.

     
    Old 06-02-2007, 07:50 AM   #7
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    Re: Testing for Pheochromocytoma?

    A fractionated plasma free metanephrine test (PFM) is the ultimate in detecting a pheo-I think it is 97% accurate. It has to be done while a patient is lying down for about 20 minutes, and then put on ice as soon as the tube is drawn. Good luck in finding a lab that actually knows how to draw and store it correctly.

    85% of all pheos secret norepinephrine, but familial cases do secrete epinephrine.

    There's also a clonidine suppression test that can see if a pheo is secreting independently from your adrenal's natural secretion.

    Good luck in your testing. I had a similar situation and have been through the testing, as they also found a small(7mm) growth on my adrenal gland. However, I've read that most growths(pheo) wouldn't produce symptoms at smaller sizes.

    It might help to get your actual lab values, instead of percentages, to see if the values are even suggestive. They say the levels might need to be 3x the upper value to implicate a pheo.

    Last edited by sue1234; 06-02-2007 at 07:52 AM. Reason: adding

     
    Old 06-02-2007, 08:36 AM   #8
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    Re: Testing for Pheochromocytoma?

    Plasma Free Metanephrine should be used as the screening test when pheochromocytoma is suspected. Its sensitivity is nearly 100%. But, fractionated plasma metanephrines is limited by false positive rates of up to 18% in people without known genetic predisposition to the disease. When it is positive, to improve specificity, a confirmatory test with high specificity such as the fractionated 24 hour urinary metanephrines should be performed which has a specificity of 98%.

    There's all kinds of ways they can go about it but just one small container of urine ain't going to do it.

     
    Old 06-02-2007, 09:38 AM   #9
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    Re: Testing for Pheochromocytoma?

    I was posting information that came from the guru himself, Dr. Karel Pacak, who works at the NIH and does research on pheos. He has established guidelines on biochemical testing that one can read about if they do a search on him. I was trying to save Tamlis time in her diagnosis, as, if the FPM is positive to a certain level, the next testing would be a scan to actually look for the tumor. I've been to that same board as heckofagal is referring to, and have read on it for years. I was just referencing what most of the posters have found to work best through the NIH study.

     
    Old 06-02-2007, 10:13 AM   #10
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    Re: Testing for Pheochromocytoma?

    Sue, I think you've got a lot more knowledge and experience on this subject than I do. I've only scratched the surface on the subject, mainly because it doesn't really pertain to me. The one thing I do believe is that either the lab tech and/or the doctor is in over their heads on this one. I think both of us have had enough experience with doctors that really have no idea what they are doing when it comes to those of us who present with an unusual problem, that we both get a little afraid for someone who looks like they are about to run into the same problem.

    I'm going to bow out to both you and heckofagal on this one cause I think ya'll are more informed on the subject than I am. I would like to know though what you think about the beta blocker issue????? Everything I've ever read about it says it's a no-no.

     
    Old 06-02-2007, 10:19 AM   #11
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    Re: Testing for Pheochromocytoma?

    Yea, that's what I learned too, was the beta blocker was a no-no. The alpha blocker is the thing to use. I was supposed to have a hysterectomy last Dec. but was still having all the pheo-like symptoms, so I backed out of the surgery at the last minute. I knew that surgery was to a pheo like gas was to a fire. My gyn is upset with me for backing out, but like you said, this issue was way over her head. The labs finally ruled out a pheo, but I wasn't going to rock the boat if it was there. I still have the little thing on my adrenal, so will have to sit and watch it.

     
    Old 06-02-2007, 10:51 AM   #12
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    Re: Testing for Pheochromocytoma?

    I had my hysterectomy when my thyroid wasn't under total control. But then again, I don't think it could ever be considered totally under control. Scared the living bejesuz out of the gyn when I started shooting off the day after surgery. He had never seen it before. He was more nervous than I was. It was old hat to me by then. I had to tell him how to treat it.

    It really is a shame that we often have to take our own medical care into our hands.

     
    Old 06-02-2007, 11:26 AM   #13
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    Re: Testing for Pheochromocytoma?

    Thank you both for your experiences and your knowledge.

    Yes, I will call my doctor Monday (She doesn't have hours on the weekend) and will wait till I talk to her before I take any more. Its just that I'm desperate to control these episodes. Sometimes it seems like an episode will never stop. I cant hardly do anything but sit or lay down (even laying down my heart is racing and pounding)

    Its just so weird to have hypoT symptoms and then all of a sudden start having hyperT symptoms. Sometimes I don't know if I'm coming or going!

    What kind of test do you think she did for in the doctor office where the result values were percentages?

    If your labs say you probably have one how do they find out where it is? How do they deal with it?

    Thanks again.

     
    Old 06-02-2007, 11:36 AM   #14
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    Re: Testing for Pheochromocytoma?

    Helen-would you mind explaining what you meant when you said you were"shooting off" after you hysterectomy. It scares the daylights out of me to have a hyster. as I don't tolerate BCP, never have. I don't know what will happen to me when I need to start my HRT. But, my ovary keeps hanging on to a growing cyst that is starting to produce pain.

    Tamlis-they will do a ct scan, an MRI, or probably a MIBG scan. That is a specific scan where you take in a contrast specific for pheos to take up and then they "light" up. Once found, they will make sure you are stable on alpha blockers and then probably remove the pheo or the adrenal it is growing in/on.

    I have no clue why the percentages....

    Last edited by sue1234; 06-02-2007 at 11:39 AM. Reason: correcting spelling errors

     
    Old 06-02-2007, 12:05 PM   #15
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    Re: Testing for Pheochromocytoma?

    Sue - It exacerbated my hyperthyroidism. I went in fairly euthyroid. I became major hyper again afterwards. I also had an allergic reaction to the demerol and the cipro which didn't help the situation. I was pretty much bouncing off the walls. I asked for an increase in betas and got some vistaril which helped the situation. A couple weeks later, my gp gave me a major increase in betas which really helped. Oh yeah, that was when I also developed an allergy to the ptu. It was a fun summer.

    The other thing I did was told the gyn that no matter what, I wanted to keep one ovary cause I didn't want to do HRT. I told him to pick the best one and leave it. He wasn't happy about it but he did it. I'm glad cause that part worked out great.

     
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