In Tears After Endo Visit. Says It's Not Pheo. Now What?

[Kris4444]

I thought he would at least test for Pheo considering my NE levels were 656/1199 but he said Mayo wasn't impressed and he didn't feel they were high enough to test for a tumor.

I asked him what he thought was going on and he said he didn't know but it wasn't something hormonal so he can't help me. He suggested I stick it out with my rheumy and let him look into a possible EDS diagnosis. He said I would need to see an oncologist or hemotologist for MCAS.

I was in tears. This seemed to frustrate him. He is a very kind man and wants to help me but I was upset that he thought nothing of the high NE levels! I told him about the strange vibrating feeling waking me up at night, he said that it's not adrenaline or the high NE levels...so what is it? He doesn't know. I asked him is this all in my head? He said again, Idk.

He suggested that maybe I go to Cleveland Clinic. LOL. Does he not realize that I am not made of money? I took a 30 day medical leave and we are pinching pennies as it is. I've been to Johns Hopkins to confirm the Scleroderma diagnosis which was changed to UCTD, now Mayo where all they found other than my Raynaud's was the high NE and that they can make me flush very easily. I don't even have a diagnosis from Mayo, they are saying I have a "hyperadrenergic state" yet the diagnosis code is POTS. Hyper POTS I asked the endo? IDK was his answer.

I am BEYOND FRUSTRATED!!!!!!

[POTLUCK]

What about plasma metanephrines and normetanephrines?

After my NE was over 8000 they did scans on me, and what I learned is the scans are not that specific either. My MIBG scan was positive and read by one excellent radiologist as correlating with a spot on CT scan. In the end we did plasma metanephrines and normetanephrines. They are easy, not to expensive blood test.

[Kris4444]

They did them at Mayo. Only the normetinephrine was high. .90 is the limit. Mine was. 1.0.

[Katybug]

Kris,

Sorry it didn't go well. I went through 30+ specialists before finding a team I thought had a clue and really wanted to help. For your MCAS, you will probably have the best success with a hemotologist or an immunologist. Usually, oncologists are familiar with the cancerous versions of mast cell disease but not mast cell activation syndrome. I'm sorry I haven't pm,ed you...my body can't get it together ...one good day in the last 9. I'll check in as soon as I can.

[looneymom]

So sorry about your visit Kris. I have a son that has POTS and the Endo would not give us the time of the day either. Its very frustrating trying to find doctors that will at least be understanding and try to help you with your medical condition. My son has many symptoms of MCAS and our GP is trying to get him into see a hemotologist. Hang in there.

[Zap]

They did them at Mayo. Only the normetinephrine was high. .90 is the limit. Mine was. 1.0.

Sorry to hear about your situation - it is terrible to be stuck in limbo. I'm in the same boat - I FINALLY after a year and a half was able to find a doctor who thought it warranted to at least test me for pheo. I have almost all the symptoms that seem to come on in bouts of adrenal surges - sweating, abdominal/chest pain, irritability/nervousness, headache, sleeping difficulty. It is miserable.

My normetanephrine was 0.71 (though it was taken at a time when I wasn't very symptomatic). I wish I could draw a blood sample (and have it tested) when I experience the symptoms to see how much things change.

I think that most of these doctors, no matter how well meaning they seem, truly will never understand our plight. The ones that do have a very different approach to finding an answer, even if it might take some unconventional thoughts. I feel very lucky to have found my new autonomic neuro - she has a decorated history and wants to find out WHY I have eluded a solution now for almost two years. Granted, I've been having a lot of luck with bypassing genetic mutations lately - but it is only taking me so far. I know there is still an answer out there for all of us, and hopefully it is coming sooner than we expect.

Whatever the case - please don't let the doctors make you think it is in your head. If there is one saving grace about all this, it is that there is medical proof that there is definitely a physiological problem with the nervous system - and while it may make us all look like a bunch of nutcases at times, I have found that if anything I think this disorder has made us some of the most proactive, informed, and empathetic people that are out there.

[Kris4444]

Katy,

So sorry you still aren't feeling well.

I'm lucky that I have a rheumy who really wants to help.

Looneymom,

I'm sorry about your son. Thanks for the tip on the hemotologist. I'll let my rhemy know. Maybe he can set something up

[Kris4444]

Zap - thank you. I am just getting started I guess. I think I'm not seeing the right doctors. All of my problems started out rheumatological. These flushing issues and others have manifested over the past couple of years. The gut issues are huge and I have too wonder if it's all related. Im fed up.

[Katybug]

Very possible gut issues are from mast cell issues...it's one of the major symptoms of mast cell disorders.

[Kris4444]

Hmm.

[yogini]

I think most end's don't know about POTS/dysautonomia, so he wouldn't know what to make of the info. I think he was trying to getl you to go somewhere else more specialized. At least he admitted he didn't know and didn't tell you you are healthy/it's all in your head as many docs do. It is good that you don't have pheo (and most peopel don't). I know it's hard to sort all of this out. Hang in there!

[Kris4444]

Thanks yogini. He is a nice man and I could tell he was as frustrated as I was. He was really hoping Mayo would come up with something concrete. So was I. At this point all I have from them is "hyperadrenergic state" *** does that even mean? Is it a hyper pots diagnosis? I guess not.

He does want me to go somewhere else and stressed that he feels there IS something wrong he just doesn't think it's within his field. He thinks it's autoimmune in nature.

I am just frustrated and confused.

I contacted my two rheumatologists, one at Johns Hopkins and my one here at home at Northwestern and threw the ball back into their court. If they can't figure it out then I just give up.

[AllAboutPeace]

Kris,

Sorry you had that experience today I hope you will find the right doc soon. I love it (sarcasm - sorry) when they tell you that your symptoms (vibrating feeling) are 'definitely not' something (adrenaline or NE levels), when they have no clue what is going on... They would probably think that most of our symptoms could never happen.

Keep searching - tomorrow is a new day!

[kitt]

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[Joann]

Kris,

I had such a similar experience. I cried when they said I didn't have a pheo. And my endo is a very caring man and said "I know there is something wrong with you, but I am not sure what. It is something that you are going to have to go to some large research medical institution." While it was great he felt there was something wrong, I was again back at square one.

I have been told possibe hyper POTS but no one in the area does anything for this or tests for it.

If you decide to go to Cleveland Clinic, learn from my mistake. Make sure they set up tests before you get there. I went there in Jan. through there Grand Consultation Dept. They set up appts. with specialists, but now I have to go back in April for the tests. So I spent money on gas and 2 nights hotel and meals and now I will have to again. I suggest skippingGrand Consult and calling the neurologist and cardiologosts dept, mention their autonomic clinic.

I am also going to try and get in to see Dr Grubbs in Toledo, but the wait time is around a year! And they put you on the wait list until they have your records. I just got my records together, so I need to send them in so, I can get on the list. I know it sounds long, but if you find someone before this you can cancel and then if not you are on the list.

I understand your frustration, I am in a similar situation and hope you find answers soon, too.

[Kris4444]

Kit my NE is 1199 upright.

Joann it is so frustrating. Who WANTS to have a tumor? This should show how desparate we are to feel better and get our lives back. As nice as my endo is I wish he could have been more helpul, given me a referral to an allergist or immunologist...

I am still holding out hope for my rheumy. He is a good man.

I see the GP on Friday to run it all past him and see what he suggests too. Can't hurt to get as many opinions as possible. I have 30 days and they are going by quickly. Sure hope to get feeling better soon.

Now if everyone would realize that I'm staying home from work to "rest" means don't call me at 8:00 a.m. that would be GREAT!

[kitt]

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[Kris4444]

Kitt,

This was the endocrinologist.

[kitt]

And you've had a complete cardio workup?

I know your passed the TTT, but it's possible to pass a TTT on a given day and still have pots. Did you wear a holter monitor for any amount of time?

What about your BP, what were their comments on that?

Have you considered buying a heart rate and BB machine at the drug store, and keeping track of your pulse and BB sitting, and after standing for 20 minutes throughout the day?

Just doing that could give you enough information to know if you have pots. If you pulse goes up 30 beats after standing 20 minutes, and you get this information consistently, and make notes, you can take that information and at least know for sure if you have pots and pursue that avenue.

Realize you're on a deadline.

[Kris4444]

They prescribed clonidine at mayo. I don't know about a complete cardio up but I've seen a cardiologists. I've had an echo, several actually. I do have some regurgitating heart valves but nothing exciting to the doctor. I have worn a holter monitor at Mayo. The results were normal.

I have a blood pressure monitor that also will register my heart rate. I'm not sure if that's what you're talking about. My blood pressure tends to fluctuate throughout the day. I take losartan for blood pressure as well as the clonidine now.

Lately I've only been taking my blood pressure after I workout because that seems to be when I have the worst symptoms. So you suggest that I should take my blood pressure standing and continue to stand for 20 minutes and take it again? I am definitely up for trying something new and yes I am on a deadline. Thanks for the idea if you have others please let me know.

[kitt]

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[Kris4444]

Kitt,

This is great information. I will try this tomorrow and see what happens. I am already up and moving this morning. I will take my bp monitor with me to bed tonight so I can take my pressure before I get out of bed in the morning.

It's frustrating trying to figure out what this is an how vague the Mayo info was. I asked my doctor at Johns Hopkins what he thought of the Mayo stuff and he said that they diagnosed me with a flushing disorder???? Huh? Where does it say that? Is that the hyperadrenergic state that they are talking about? Must be what he is referring to yet they never referred to it as a flushing disorder...I'm so confused. He said he would set up haing mast cell testing done but he doesn't believe this will be the problem...hmm

Anyway, thanks for the info. It will be interesting to see what happens!

[boymommy3]

Kitt....what if your hr goes back and forth? Like say it goes up 30 beats or more immediately upon standing but after a time comes back down?

[Kris4444]

Oh kitt they prescribed clonidine to "calm the sympathetic nervous system response." They said that my body is randomly shooting off adrenaline which is what is causing the flushing. The clonidine is supposed to help that.

I saw my gp yesterday and he wants me to up the dose to 3x a day already. I just started taking it twice a day Tuesday...

[Joann]

Kris,

How is the clonidine working? My cardiologist wants me to switch to this. I haven't yet because I am so afraid of how my body reacts to medicine. So there is the double whammy of stopping something that is working somewhat(whenever I am late taking my meds I feel terrible) and the second whammy of trying something new that may help or may make it worse.

I know I will probably need to just try it because it may be that miracle drug for me, but I have been waiting for a "good time". This weekend my daughter had a tournament and now this week she is on school break, so I am thinking of trying it after that (maybe).

You seem to be very similar to me, so even though I know we are all different, there is a possibility if it works for you it will work for me. I don't have the flushing like you, but when I wasn't on the medication that I am on, I would get those rushes that would sometimes make me flush or sometimes the opposite, I would get deathly pale with this. Since the medication, I do not have this happen as much, except for those extreme flairs.