Is It Horrible For Me To Say That I Hate My Endocrinologist????

[derekliz]

So here is part of my conversation via email with my endocrinologist (I am now searching for a new one): My comments are in red

Date: 10/17/2011

The reason I asked about the testing is because I came across this information: http://www.mayoclini...ontent/82/3/308.

1. full 24-hour urinary sodium test. This test is useful in determining if one's plasma volume is normal (Low, 2000). One study performed by researchers at the Mayo Clinic showed that 28.9% of POTS patients excreted less than 100 mEq in 24 hours and 66.4% excreted less than 150 mEq in 24 hours. These researchers concluded that an important first step in the assessment and treatment of POTS is to determine the patients volume status and institute salt and fluid replacement in those with hypovolemia (Thieben, Sandroni, Sletten, Benrud-Larson, Fealey, Vernino, Lennon, Shen & Low, 2007). A study of neurocardiogenic patients noted that those with a urinary sodium excretion <170 mmol/24 hrs. were more likely to have reduced plasma volume (El-Sayed & Hainsworth, 1996). These patients responded well to salt loading.

2. A catecholamine test is sometimes given to patients suspected of having chemical abnormalities. Testing one's levels of catecholamines and their metabolites is also useful in detecting certain tumors, such as pheochromocytoma. Some POTS patients will have abnormal catecholamine levels, particularly norepinephrine levels. Norepinephrine is the main chemical messenger of the sympathetic nervous system, and is often elevated in POTS patients. A physician can determine one's total catecholamine levels through analysis of their blood or urine.

> From: Doctor > Sent: 10/17/2011 3:36 PM > EMAIL: I do agree that Mayo has one of the best adrenal experts around and that doing some of these tests in a controlled environment where fluid input and output and sodium is measured can be useful for the more subtle cases. Would you be willing to go up there?

Date: 10/17/2011

Yes, I would be willing to go there if I could afford it and had care for my 2 elementary school aged children....just not an option unless they could guarantee a cure! I did not think that these tests had to be done under a controlled environment as it is more interpretation of numbers rather than a diagnostic imaging test

> From: Doctor > Sent: 10/18/2011 8:16 AM > EMAIL: Elizabeth I can tell you are frustrated so I am trying to come up with options for the suggestions you have brought to me. I am clearly not meeting your needs since based on my experience with the tests you have done we have pretty ruled out any signficant adrenal issue contributing to your symptoms, but I know you do not feel this way so I was trying to think of other options. I feel we have tried to be helpful in following other suggestions and requests you had and I am sorry you do not feel supported.

[Yolaclover]

are way more supported by your Dr. than I am by mine. #1 he is taking you seriously!! He is listening to what you want to do. Guarantee a cure? I'd like that too, I have to kids, 5 and 4 yo. If I was referred to mayo by my Dr. I'd find some support from family or friends and go. If that is too far, maybe a similar place near home. Good luck!!!!

[pulp]

Maybe I'm missing something out of the bigger picture cause you do sound very upset about it, I think the Dr sounds quite supportive and polite towards you.

[derekliz]

I have had to ask her to run all of my tests and she has not suggested any. When I asked her to run the other two tests, i got that response. I guess you would have to know her to understand completely. The only reason she mentioned Mayo is to let me know she cant do anymore for me. I was trying to provide her with information so she would not have to research...oh well

[derekliz]

I know that my comment about guaranteeing (sp) a cure was indeed scarcastic towards her and was meant to be. I could go to Mayo if i really needed to and am so thankful to ave the support of my family. I have spent 15 thousand in medical expenses not including the last 2 years.. its just sad that she won't help me further when i have been her patient for almost 6 years just recently though for POTS stuff. . I do travel 6hours (3hrs each way) to Birmingham but they asked me to have my Endo run the additional the additional tests as they only do the TTT, echo and treadmill. I mentioned it to her in a previous msg and she totally disregarded it

[Katybug]

Hi. I get your frustration. I feel like her email was patronizing which generally drives me crazy. I've gotten to the point where either my docs are full on in support of doing/trying anything that will give us answers or they simply are not my doctor any more. I don't have the mental or financial resources to put up with anything less at this point.

As a side note, I did have catecholamine testing back in March which was ordered by my cardio (who is learning about POTS because of me but isn't well-versed yet). My neuro/POTS spec was going over those reults with me last week and said we will have to redo the testing because the lab didn't even come close to drawing the blood correctly. He asked if they laid me down..No, if they inserted the needle and then waited for 20 mins. before drawing the blood so the pain response to the needle wasn't affecting the results...No, and if they centerfuged the blood immediately and put it on ice...No. He said that there is a specific way to do these tests accurately and anything less does not give accurate information. SO, my lesson last week was to ask him how the tests should be done from now on and make sure they do it right at the lab. Thought this may be useful info for when you find a doc to order the tests.

[sue1234]

Derekliz, you know, if you really want those tests done, you can order them yourselves from various online labs. You do the labs at your closest LabCorp, even though you order them through an online lab business. I have ordered my own 24-hour urines over the last few years if I was between doctors.

[derekliz]

I get frustrated because they are the doctors, this is what they went to school for and we have to ask them to do alot of things. Deciding what tests and treatment are not my specialty but my health and body are. I actually enjoy educating myself and feel that it is important that everyone does the same...we are all human and can make mistakes.

Before having labs drawn, I always go to the Quest website (as long as I know in advance which tests are being done) and read all of the preparation, tubes etc and watch the lab tech carefully. What happens after I leave is another story.

Sue1234 .....As far as ordering my own labs thru online lab services, are those generally covered under insurance? Could you please PM me with some info?

I have had my aldosterone levels tested over the years by several MD's and they have always been low in range (highest was 8 with a first morning draw) my latest was <1 and my endo said that was normal but the range is < or = 28. I feel that it is part of my overall problem hence my search for another endo.

I am sure I came across as being harsh in my posting, and I did not intend to but I get so aggrivated with the doctors and had to vent. Thanks for listening and for the advice

hugs!

Liz

[yogini]

I hate to say this, but she doesn't sound "that bad" compared to many. Most of the docs I have/had wouldn't bother to read anything I sent them or even respond at all or give any suggestions, or agree to any extra tests. Unfortunately with POTS, noone can guarantee that any test or treatment is going to work. I can understand, though, that you're not able to go to Mayo. POTS also falls outside the endocrinologist's area, which might be part of the problem. It is hard to find any doctor, even POTS specialists, to take charge of our condition. If this doctor's manner doesn't work for you, maybe try another doctor. I hope this isn't sounding like I'm taking the dr's side...just wanted to share my thoughts.

[derekliz]

Yogini, everyone is entitled to their opinion and I respect that. I just actually recd a certified letter dismissing me from the practice!

She has told me in the past, prior to being diagnosed with POTS, that she could not help me anymore and it was out of her hands. All I wanted her to do was run some tests that are listed on the DINET website which are typically done by Endo's and without even answering me, she made the comment about going to MAYO.

I worked in the medical field since I was 18 and I know how most MD's are unfortunately and how they talk negatively about patients that make suggestions to them. I saw it all the time in the pediatric office I worked in and the Dr's even had the nerve to talk about private patient issues in front of other patients.....so unethical.

I am ok with it and will find another Endo to deal with other issues that I have unrelated to POTS such as nodules on my thyroid. It just shows me that she and I are not a good match and I will look for someone that will be a better match for me....it is what it is.