Seeing an endocrinologist tomorrow

[morgan617]

Well, as some of you may know, I haven't been posting too much, trying to dig myself out of big ol canyon.

Anyway, I went to my primary and asked him to refer me to an endocrinologist. I don't need a referral, but the one I wanted to see, won't see patients without one. He said he didn't care, but didn't know why I wanted to see one, so I said I don't get great big adrenaline rushes anymore, nausea, feel like crap etc and I wanted some adrenal testing done. He said he would do some, so ordered cortisol stimulation test.

It was all whacked out. My baseline was normal, but there was no bump with the ACTH. So my doctor said he had to "ponder" this. The test results would indicate someone on steroids already, which I'm not.

Well, while he's been pondering, I've been in a marvelous downhill slide. Last week I called and said he'd better do something. So he ordered some basic tests, which were , of course, fine. He then left on vacation without telling me they were okay.

Bear with me here, so this week, I called and told his nurse I want to see an endo, so she called and the doctor decided a week ago or so not to see any new patients. Great timing huh.

We have have 4 endos in this town. Two are in together, the ones not seeing new patients. So I cried for awhile and said I give up and all that stuff we say to ourselves when no one else will listen to us.

Then I looked in the phone book at the other two choices, closed my eyes and picked one. HE answered the phone, which caught me totally off guard. So I of course stumbled around for a bit, and then told him about the test. He said, "the test was done wrong, they didn't give you enough medicine" I said they had a 10 cc syringe full of stuff. He said if baseline is above 17 (mine was 23) there's not a problem. I said okay, but what do you do if the test is done wrong. He thought for a moment and then asked me why I had it done in the first place, so I told him, OI Blah,blah,blah and he said. Okay either they did the test wrong or something is really screwy with you, (do ya think ) what did my urine show. I said I didn't have a urine test. He said why not, I said don't know.

Okay at end of story. He said come in tomorrow after 1;30 and bring the lab results, because something is very wrong here. So I have an appt tomorrow. What I will find out of course is that they screwed up the test. At that point, I will definitely give up. See my doc once a year and that's it. But, this was a rather surreal situation. So since all of us are used to surreal, I thought I'd share. Thanks for listening. morgan

[Sunfish]

perhaps it's a bit sad, but i'm not surprised by anything anymore. i just wouldn't have the energy for all the shocks! (both good & bad). i know we've had lots of "roundtable" discussion about the endo stuff already but just wanted to send you good wishes for your appointment. i hope that it at least helps clarify some bit of things for you. i'll look forward to hearing how it goes. my follow-up with my endo is friday so i'll be hitting him with all my many questions then.

congrats on your perserverence,

:-)melissa

[MightyMouse]

you needed and endo and he answered the phone...I think that's some kind of good karma

Do let us know what happens with your appointment. I'm hoping he can figure out what piece is missing to solve your puzzle.

Hugs, Nina

[DancingLight]

morgan,

i am really, really, really, really, really (got that???) hoping that this will be a turning point for you and that this dr. answering was an 'angel moment'...ya know what i mean? those surreal things you talk about that come out of the blue when you need them the most...

i don't want something more to be very, very wrong with you...but, man, am i glad a dr. paid soooo much attention and took it so seriously. please post when you are able to update us on the appt.

i have DEFINITELY noticed that you haven't been around much...and i miss you here...i'm not keeping up much with the site either though, so i can't really talk i guess. so many of the 'oldies' are away a lot these days......you, geneva, tea, merrill, etc...ernie's usually here though!

okay, i started the topamax and am trying to hold on to what you have written about getting through the early part of it, but i was up all night last night and am miserable....ugh! so, gotta go fall back over...

i will be keeping you in my thoughts...

love, em

[corina]

Morgan,

I'm really glad to hear from you. And wishing you THE BEST OF LUCK. I've been having bad endo experiences (him writing my PCP that everything was screwed because I used meds while doing the test, while I ASKED him before and HE allowed me to arrrrghhhhhhh). Meaning to tell you: take very good care of yourself and MAKE SURE nothing can go wrong!!! I'm sending you good wishes and please let us know how it went. Don't forget that we want to hear from you when things are going bad as well. We can stand together in good times AND bad!

Warm wishes Morgan,

Corina

[Ernie]

Hi Morgan,

What a postive experience you got. The doctor answering the phone and taking you seriously and giving you an appointment within 24 hours.

I surely hopes that I find a solution for you.

Ernie

[yogini]

Morgan,

I'm with Emily and Nina...I really hope you're on your way to finding something here...something for which they can give you meds. Don't give up, we're all behind you! Let us know how it goes.

-Rita

[steph37822]

oops

[persephone]

I'm going to see an endocrinologist here in August...he seemed open inded when I sasw him before Xmas, and agreed I had a profound tachycardia on standing. BUT he didn't know about POTS at all.

He's asked me to forward relevant paperwork to him- articles etc about POTS so he can get an overview. If you were me, what would you print and take, bearing in mind I'm looking to find what hormonal treatments might help?

It's been suggested I could try HRT- hormone replacement therapy..anyone else try this and had a positive response?

any response gratefully received.

P x

[Sophia3]

Morgan

Good luck with your endocrinologist appt. I will be curious to hear your update.

Sophia

[morgan617]

thanks for the support Iwas thinking of printing up something I found, but I can't remember if I found it here or on my own. If I found it here, it was on a Nina post.

http://www.potsplace.com/what_are_the_mechanisms_of_POTS.htm

Well since it's potsplace, I guess the credit goes to NINA of course. But it's a very nice overview of all the different kinds of autonomic dysfunction they are finding. But in pretty plain english. I thought it was extremely informative and am going to send a copy to my pcp also. He says he can't put me anywhere, so I guess he can stick it anywhere he wants. The label on me of course.

Jake is hanging in there. He just had his second MRI of the tumors and they have not changed, Thank God. So one less thing to worry about. He's still higher risk for fractures, but those are sure easier to deal with than cancer. He still has all his other problems and just had to up his topamax for migraines. His GI doctor got him some meds from Canada not available here for his stomach. Too soon to know if they are helping, but at least he tolerates them fine. It's to help with his gastric emptying.

I think I just got a glimpse into the POTS world of syncope. I was talking to the little neighbor girl. She's 17, but a little DD. We were chatting, she was talking and the next thing I know she's flat out on the ground passed out like a light and having seizure type activity. I couldn't get over the fence, so I was screaming for her mom, because she really whacked her head on the concrete. I hurried (as fast as I can hurry) around to the front of her house and she was already wandering towards the front door. She looked like death. I got her in the house and her mom made her lie down. Her sister said she does this every summer from the heat. So I'm going to give her some info on POTS. It was rather surreal, as one moment she was talking and the next, out.

My best friend almost bled to death after knee surgery. She called me from the hospital and said she was dying and no one cared. She's very laid back, so I knew it was bad. I raced over there. Yes, I actually drove. and sure enough, she was about to die. She lost over half her blood. A GI bleed. I cleaned her up, yelled at the nurse, called her doctor yelled at the nurse and then told him to call a blanking code. She was ICU for several days. We saw the lawyer yesterday.

My husband has to have a treadmill. He has been getting short of breath and has borderline venticular hypertrophy. There is a lot of heart disease in his family and his cholesterol and HDL are off.

My son (the oldest) dropped a 75 pound bucket on his foot at work. He broke 2 bones in 3 places each and completely separated another one. He will be off work at least 3 months. He has an appt tomorrow to make sure he is healing and won't need surgery.

This has been my last couple of months. Aren't you glad you asked steph. Now you know why I haven't been posting. (lurking a little I must admit) And then this thing with my doctor not sending me to an endo, or supporting me when the ER treated me like crap. I am so wasted, it takes most of my effort just to breathe, let alone do anything else.

That's readers digest of my life lately. Anyway pers, I really like this article, so that's what I'm taking tomorrow. When I told him I had autonomic problems, he didn't say anything, but that I should be seen soon. I doubt he knows squat, as I am starting to believe we should still be riding around in covered wagons out west in the medical dept. It's the stone age here, but here's a tidbit. You know that hospital that called my TIA a panic attack? They were voted in the top 100 hospitals in the nation for cardiac care. I think it was the nation of the third world, but I'm not sure morgan

[steph37822]

oops

[morgan617]

Steph, I'm glad you cared enough to ask, and it is cathartic, so thanks morgan

[Sunfish]

morgan-

i realize you may be wiped out but when you can let us know how the appointment went. i hope the doctor was open & willing to listen but also was helpful in adding his expertise to the mix...

just wanted to let you know that i too was glad to read your update. i'm sorry you have to be juggling so very much right now but it's always good to hear from you.

i'm so glad to hear that jake is doing as well as he is in terms of his scans & hope the new meds are able to help. i'm guessing the med & know that many have done well on it. steph is much better than i at keeping track of things as i remember his story 100% but couldn't have told you for the life of me who he "went with" on the board. i need to keep flashcards.

i can't imagine how odd it must have been to be on the "other side" of someone fainting. i've been around a lot of medical crises, accidents, etc but don't recall ever seeing someone faint....it is great that you're passing info on to the family.

i know it must be hard but try your best to take care of yourself in the midst of taking care of all those around you. you have such a great heart & your friends & family are lucky to have you.

hang in there,

:-)melissa

[morgan617]

Hi all, first off, my son's appt with his foot was fair. At least 4 more weeks of non weight bearing. It's already been 4, so that's awhile yet.

The appt was very interesting. First off, I wore black slacks and then realized they were covered in Chloe fur. She is my westie and they are pure white. When we got there, we went in and there was a guy at the counter on the phone. Iasked if he was Dr. ----- and he said no, then I realized I know what the doctor looks like from my days of hospital work and thought how stupid. He gave me a bunch of paper work to do and as I sat down, I saw a poodle trotting down the hall to his exam rooms. I didn't feel too badly about the Chloe hairs after that.

He came out and got me, the doctor, not the poodle and spent 1 1/2 hours with me! He knows A LOT about dysautonomia. I gave him the stuff I'd printed up and he looked at it and said, well this is great, but where's the treatment plans. Why do they write about everything but what to do for it? He asked me about proamatine, mestinon, flourinef, some antidepressant who's indication is for fibro. He asked why I wasn't in something to keep me from breaking my hip, because of falling and had they tried g pants on me. I was flabbergasted. I told him we live in the land of covered wagons as far as OI goes. He asked about a bunch of tests including 24 hour bp and tests they don't do here. I had to pick my jaw up off the floor.

I told him I have never fainted, my bp is very high and almost every drug they wanted to use on me was contraindicated because of my bp, or meneires or side effects. He did a nice thorough exam. My bp did drop but bounced back up very quickly, which threw him off a little. I said it was a little labile, but generally pretty high. However, I have been feeling more presyncopal. He complimented me on my sense of humor. I told him he couldn't say anything bad about me that hasn't already been said. He laughed.

Anyway, he said my lab was very bizarre, so now I am doing a 24 hour urine cortisol.

He said since I had had a cortisone shot from my allergic reaction, I could still be suppressed from that, but it was quite awhile. He said it would explain it, but he was looking more at adrenal insufficiency and he would probably try a low dose steroid just to see how it made me feel. He said I was depressed (duh, that's a hard one) but that everyone with chronic illnesses are. People who wake up with fatigue are depressed. I didn't really agree with that one, but didn't say anything. So after the results of my 24 hour urine, we will decide what to do next, but he said whatever it was, he would make sure it was done right.

So it actually went really well, he knows about ans stuff and he believes it and he didn't think I was crazy. Pretty good for a start. He thinks my adrenals are okay, but probably still will try flutocortisone for awhile just to try and help me feel better. So off to a good start. Man sorry to be so long winded. The only problem is, if everything is normal, no need to see him anymore. hmmmmm morgan

[MightyMouse]

Hi Morgan, I'm glad that your appointment was so...well... good Sounds like you got yourself a "take charge" doctor, which is just what you needed.

As for the potsplace content, that's all Michelle, so I give a deep gracious bow to her on that one.

Thanks for taking all that time to update us on things. Nina

[Sophia3]

Morgan

I am SO GLAD you found a doctor that is knowledgeable about your illness.

I shall look forward to your next update with anticipation. I hope he can find SOMEThING to explain things or to help you.

S

[Sunfish]

morgan-

yippee! i was SO happy to read that your appointment today was a good one. i know it didn't give any magic answers, and i know no one is perfect (i.e. that fatigue upon waking has to mean depression), but overall it sounds like you had a great visit with a doc who both has some understanding of dysautonomia and is open & willing to learn & search for more answers. quite a combo. nevermind a sense of humor, a respect for you as a person, and a poodle . that certainly gave me a laugh, although not as much as if the poodle had in fact been the one to come out to get you!

i hope this is the beginning of an upturn for you...it's certainly time. and based on what you told us about him, it sounds like this doc isn't going to hang you out to dry just because of a normal test result, so i wouldn't worry about losing him at this point. he sounds like he's in your court & is going to be there as long as needed.

congrats on your day & of course keep us apprised as things arise with testing,

:-)melissa

p.s. i'm sure you've said before, but have you never been on florinef? did he say why this would be what he would try rather than hydrocortisone (since that's what was low on your "interesting" test)?

[morgan617]

Hey Melissa, actually he was referring to why I've never been tried on any ans drugs, We discussed POTS for a long time before we got into the adrenal thing. He does plan on giving me some low dose hydrocortisone just to see if I feel better on it. As far as the florinef, he was just appalled that no one's even suggested any POTS drugs. Sorry if it was confusing. And thanks everyone for the support, morgan

[steph37822]

Well Morgan that is certainly a good story to read! Yes, all the way down to the poodle, do you think he handles insurance paperwork?

I am a bit shocked myself to learn you haven't taken any POTS drugs, your docs really ARE in the stone age aren't they?! I so hope this guy finds SOMETHING, ANYTHING on your testing that gives him a reason to want to investigate, or treat you further. Every now and again we seem to find a doctor that seemed to have paid attention in med school!

Still thinking about you, and your family.......as for your son and his non-weight bearing foot, as someone who spent 7.5 of the last 12 months in casts, I can relate, it's so much harder when it's hot! But I hope he heals up decently!

Again, thanks for the update, please try it again sometime when you feel up to it with more news from your docs AUDREY!

Take Care

-Steph

[mom4cem]

I'm a little late on jumping in on the post, but glad to hear the appt. went well. It's nice to find someone who does not "poo poo" how you feel, what you say or that you have any knowledge of what is going on etc.

I hope only positive things come out of this visit for you!

Hang in there with the family too

[Roselover]

Morgan, I'm a little late here too. I read all your posts here and I am amazed at the doctor you have stumbled onto. I think I dream of tripping and finding a doctor who can talk intelligently about ans stuff!!! I sure hope he has some help for you!

Thinking of you, ~Roselover

[calypso]

Morgan,

You continue to make me laugh (and I mean that in a GOOD way!). The poodle bit was good.

Sounds like you found a doc with a clue. That's always a welcome gift. Hope something starts to help you -- it's so unfair that no drugs seem to help you.

Amy

[persephone]

Brilliant- a doctor who LISTENS! congratulations!

[MomtoGiuliana]

I am so glad that you finally have found a competent, knowledgable and caring doctor. That could make a huge difference for you--I hope so.

Katherine