Too Pushy With Doctors?

[lieze]

Seriously!

Please feel free to give honest feedback.

I just shared with a friend my latest update of low K and my idea to call my doctor Monday and get her to order blood work to check my adrenals and then go see her later in the week to review the results and discuss how we will manage my potassium level.

She hinted that I was being too pushy with my doctor.

That I need to let her decide if that's necessary and suggests that my body is just out of wack because of nutrition/diet.

I think adrenals could be the reason why?

I think it's my body and I have a right to know and not just wait for some other crisis like I had today.

I feel like I have to advocate for myself like I did with sending myself to an allergist.

How do you feel about your body and tests?

I feel super crappy at times.

It makes me think something is not right and as the captain of this ship it's very hard for me to not want to do something.

I think I've been fairly minimal with testing actually and I think I've been to ER more than to my doctor.

Something right there indicates a problem to me.

I think proactive rather than reactive is crucial.

Why wait for someone to mention oh let's check your adrenals?

Maybe we're just a different generation.

How does my doctor feel when she gets results and I am right? Like with the allergies.

I hope I'm wrong.

I hope my adrenals are just fine.

I will happily let her win that one.

[songcanary]

Ha ha, if my body were out of whack just because of nutrition/diet, I'd have been better long ago. We have symptoms that indicate more than just that. What tests are you wanting for the adrenals? I want the same. My cortisol is always high, probably from stress, but who knows. BTW, cortisol is catabolic to muscle and I wonder if that's why you can't gain weight. It happened to me before I got diagnosed, now I feel it happening again. Ugh. I don't know why some doctors cringe when we ask about adrenals. They are soooo important to well being.

[samannran]

I don't think you are being pushy. You know your body better than anyone. If you feel this is a test that is necessary, then ask for it and be persistent. Hopefully you will find some answers.

[ladyt]

If u can find some answears be as pushy as needed. And whanting answaers i dont think really that pushy at all. Even though many docs seems to think so...

So keep at it.

I whant to be more pushy, or even better find the rigth way to be pushy. I am sick of getting told that we have tested u for everything. When i know that it not true. My nero exam was the doc reading my journal (ridled whit wrongs) lookng over and old mr and saying, u belond whit the cardios....

But that others seems to be more of the rigth type pushy gives me hope..

So pleas keep at it. Gives me hope that i will manage the same one day

(ust for clearification when it comes to ones health pushy is good!!!! ofcourse like all things there are limts, dont think u should call the doc in the midle of nigth to order bloodwork etc )

[Yolaclover]

I wish I could advocate for myself better, feel like I'd be doing better if I had insisted on some things or "fired" certain doctors earlier. Keep fighting for yourself!!!! xo

[lmt033167]

why do some people feel like your friend? I've heard that but let's be honest...doctor's are overworked and tend to stereotype patients....esp primary ones - they have to take on 10 times the amount of patients than our other doctors...some specialists have a "God" complex such as my first EP and no one questions him...until I did and I've kept on questioning him because I know my body and I know something isn't right.

My primary even though she is great won't do my Free t3 panel for some reason, even though back in 1998 I was dx and treated for hypothyroidism...March 2011 she did my panels and found my TSH and T4 to be off but waited on giving me meds due to my heart problems so when she refused to even try meds for 1 month to see if I would feel better, I went around her and made an appt with an Endocrinologist to get to the bottom of my problems. I guess she got her toes stepped on by me taking a proactive role in my healthcare and refused to even send my blood tests to him, but I'm tired of being sick - I need answers and treatment.

keep being your own best advocate because chances are no one else will

[HopeSprings]

Definitely NOT too pushy. I say do the legwork, present reasonable ideas to your Dr. and hope for cooperation. No one is going to give the hours of thought and research to your case that you will. I doubt most of them are thinking about our situations for more than two seconds after we leave their office. In many cases we know more than them because we are up on the latest research. I'm finding that trying to find answers to this is like looking for a needle in a haystack. There are so many possible causes, which puts us in the position of trying to rule out all of them one by one. A slow and painful process. I'm sure I have annoyed more than one Doctor -- oh well! You're doing the right thing.

[lieze]

As a nurse I always enjoyed working with doctors who would explain to you why...I would see what was going on with patients and I would report every single thing I noticed about them. Sometimes their response and orders did not make sense and we had one great doctor for a while that would explain why-yeah in doing so I think it gave him a rush that he knew so much more than us...but I didn't care.

I felt better knowing why we were doing a certain treatment with a patient-it made all the difference even if it didn't solve all their problems.

There would be things many things I would see left go like a woman who had horrible drops in bp after she ate.

She would have what I know now to be POTS like symptoms with the blood pooling.

Her bp would bottom out.

She would sometimes pass out.

First she would wail that she had to go to the bathroom.

This was basically left untreated.

The nurse I worked opposite of laughed at it or tried to blow it off as just Lucy.

Lucy had postparandial hypotension.

Another resident had a broken back.

When she sat in a chair too long she hurt and begged to be laid down.

She cried out and became very anxious.

She was labeled with anxiety and they would not do anything for her-gave her anxiety meds and said-the doctor has decided this is anxiety ( different doctor since fired from

our facility and the local hospital ) it could have been after the woman died the daughter had the spine x-rayed and confided in a nurse who told me that her mothers back was broken and she was forced to sit up in a chair and every time the daughter expressed concern she got the brick wall response.

I don't want to be a part of that closed mind mentality.

If something doesn't feel right or seem right it isn't-there is a reason.

It may be my personality but I want to keep looking for answers.

If nothing else i know for me when I think it could be adrenal failure I go onto a panic and I get desperate.

Just knowing that my adrenals are healthy and lab tests came out normal could do a world of good for my overall outlook.

At the same time as I've admitted some tests scare me and I don't want to put myself through unnecessary tests both from a financial aspect and I just don't want to pit my body through the stress if it is unnecessary.

So if a doctor thinks something is worth exploring I need them to explain that to me.

I don't know if I have the right doctor or not?

No one is perfect.

I'm not sure how comfortable she is with working with me.

I think relationships are changing between patient and doctor-yes they are more educated in the overall function of the body and how everything relates to each system and dysfunction of that system.

There is so much info online that people can look up and we are the ones feeling it.

I know how my life has been impacted and when I feel like I can't get up and walk across the room because I don't have the strength I'm like whoa.

It's changed for me-first it was heart spazzing out going bonkers.

Now for the most part except for that awful spell yesterday which I think was brought on by the low potassium my heart has calmed way down in a good way.

It's just the extreme weakness now that is just so overwhelming and sick feelings that make me feel like something is not right.

[lieze]

And may I ask why I left the hospital yesterday with a diagnosis of anxiety and palpitations when my potassium was 3 hello? How about hypokalemia? And I'm not sure I'd classify a heart rate of 169 palpitations. Yeah I think anybody might notice a little anxiety at that point especially if they can't take a breath.

Am I just being labeled because I have a untreated condition that gets out of hand at times and lands me in the hospital ER?

[lieze]

On second thought-I need to give thanks.

Thank you God that I did not have a heart attack, and that they found nothing else concerning and I could walk away with such a trivial diagnosis.

Let's hope they are right.

[toddm1960]

Not too pushy at all, if I hadn't pushed like this I still wouldn't have a POTS or mitochondrial diagnosis. Most doctors don't look beyond their standard tests, if they don't want to talk about my ideas I fire them and look for someone who will.

[yogini]

I've had the best luck by asking docotrs for things - like tests and medicine. I think doctors appreciate it and like informed patents, as long as we are polite and reasonable. Maybe your friend doesn't understand rare illnesses...but most of us have doctors who don't know much about POTS. The only option we have to feel better is to ask.

[lieze]

Good advice.

I think being mindful of my approach is wise.

Maybe if she knows how much anxiety I have regarding the possibility of adrenal involvement she would be more willing to do the tests more to rule that out with the idea of sending me on to an endo if we get wacky results.

If everything comes back normal I would feel so much better.

[Sallysblooms]

It is wonderful to work WITH our doctors! Helping them with our symptoms, showing them things we have read about etc. I keep a running list of questions and ideas. Then I consult with my doctor. Integrative, so his mind is WIDE open to ideas. He tells me about the best supplements for each symptoms and overall health and I have made a lot of progress with my CFS and POTS.

I agree, being polite about everything is important of course.

[abnel]

It is wonderful to work WITH our doctors! Helping them with our symptoms, showing them things we have read about etc. I keep a running list of questions and ideas. Then I consult with my doctor. Integrative, so his mind is WIDE open to ideas. He tells me about the best supplements for each symptoms and overall health and I have made a lot of progress with my CFS and POTS.

I agree, being polite about everything is important of course.

Just out of curiosity, what is an integrative doctor? Do they have additional qualifications to a primary doctor? How do they advertise their interest or specialisation?

[Ernie]

Hi,

I think that we have to fight for ourself and I would not label that pushy.

I would still be in my wheelchair if I had wait for doctors to do something.

[Magnesiumgirl]

Be as pushy as you need to be with doctors! you are there because you are sick, when you are sick, it is primarily your job to get help and get better. Espically when your body is going outta whack.

[Brye]

That's a tough one. I'm a nurse and I feel like if I need to be "pushy" with a doctor it's time for me to find a new one. The ones I've felt like I needed to be the one to push to get things done are no longer my doctors. I've now found a couple doctors who are very willing to listen if I have a concern and very willing to offer their suggestions as well. Hope you find a doctor you can work with!!

Brye

[lieze]

I wanted to say I was very happy with my doctor's response on this.

She ordered labs and is getting me into an endocrinologist.

I think I have just been dealing with this for so long...it's a very frustrating and scary thing.

Have lost so much of my life that I go between feeling devastated and ready to give up to just desperate and looking for answers.

I've just been an emotional wreck.

It was difficult for me to get any one to understand how weak I was when I was of a normal weight...now that I'm severely underweight people are finally hearing me that something is wrong...I am tired. : (

[corina]

very glad to hear your doctor is working with you lieze, well done you!!! hope this will give you some answers.

take care,

corina

[RockiesGirl]

I don't know if 'pushy' is the correct word? I do not think you are being pushy. I think that a large percentage of us would not have a diagnosis if we didn't ask, re-phrase and send the Docs in another direction or thought pattern. The doctors are just like the rest of the population, some nice & willing listen/ help. Some who are thinking about their plans after work & just want to get through our appts. and some who had a huge problem etc that they are dealing with. Or maybe they are just not very nice, receptive people, I know I seem to run into A LOT of them.

I personally think that you need to find the Doctor that fits with you Listens to you, has time for you etc.

I also know that it is VERY difficult to explain this syndrome to friends/relatives etc. As with me, it makes one question oneself... YOU know your body and if you are still not feeling better...there is something more wrong....seek answers with a stiff upper lip ;o)

My Best to you with prayers, hugs and thoughts!!