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psalm 56 3
11-25-2006, 01:24 PM
I am so furious I can hardly contain myself. I've been having migraines for at least 2 months now and decided to go to the Drs. to get some relief. She was unavailable so I saw the nurse practitioner What a joke!! She questioned me about everything. She tried telling me the chest pain I had been experiencing was more likely coming from an ulcer. I told her I have not had any problems with my ulcer for almost a year now. She proceeded to tell me that I probably did but just was not aware of it. Okay, for the sake of argument I let that remark go.

I told her the only reason I was there was to get something for my migraines. She told me that it was possible I needed a CT scan. I LOST IT!! I told her that was crazy! I reminded her that I had Lupus. I also told her that I have no past complaints listed in my records for migraines and that right now I was in a flare and I believed that is where they were coming from. She said "Well all your test results came out normal except for your thyroid, it is too low. I want you to take another thyroid test. I told her the one I had done was from a few weeks ago why on earth was I being told to take yet another!! In the past my doctors would up the medication and have me come back in 8 weeks for retesting. Not come back in 2 weeks and lets test again and again!!

OMG I am so mad!! For the migraine she said she would give me a sample pack which contained 2 pills of which 3 per day could be taken. I handed her a pamphlet that would give me up to 42 tablets for free from the company (Topamax). She said "No see if your insurance will cover these ones and that is what I am writing the prescription for." She said they may be pricey if not covered. I said then why won't you just give me a prescription for the ones I can get for free to try them. She said she didnít want to and I needed to do what she said. She stated that I try to play doctor and self diagnose. At this point I think I do a better job.

I cannot remember a time when I have been more outraged!! She completely dismissed my Lupus, said that the pain in my chest was from a non-existing ulcer and when I brought up the documented fluid on the heart and lungs she dismissed that too. My own internist never even prescribed anything for the fluid. I started to take Naproxen on my own.

Please, please is it me?? I really think I need to find a new doctor!

MARYCAIN
11-25-2006, 01:55 PM
The only reason I can imagine to take another thyroid test that soon would be if the results of the first were questionable, maybe a lab error or something. But if that were the case she should have told you the specific reason the test needed to be redone, not some arbitrary, do what I tell you.

Do you like the doctor well enough to keep seeing her and avoid the nurse practicioner? My GP has two nurse practicioners, one is great, the other I avoid like the plaque. It is incredibly annoying when a health care "professional" tells you you do have a problem you know you don't have, while ignoring the problem you do have! And it infuriates me when a doctor won't prescribe an affordable medicine that works, and instead wants to prescribe the most expensive drug, regardless of whether it's the best drug, because he's accepted gifts, trips and other freebies from the manufacturer of the expensive drug. I know doctors claim this type of stuff doesn't influence their behavior, but we all know it does.

Is there a local support group in your area who might have some tips on a good doctor in your area? Or if you have any friends who are nurses, they might have the inside scoop on the ones to avoid. If you like the doctor, you might be able to overlook the NP, but if you have doubts about the doctor, it might be time to look at other options. And if you're having lupus migraines, it might take a course of steroids to control them - sometimes they don't go away with the typical migraine meds.

Sorry you are having such a a difficult time with these headaches - the migraines can be an absolute misery.

Saysusie
11-25-2006, 04:08 PM
Also, if you do like your doctor, make sure that you tell him/her that you were not at all satisfied with the nurse practioner and that, in the future, you would prefer not having to deal with her at all. Also, before you fill the prescription for the medication you did not want, talk to your doctor about the ones that you could try for free and ask HIM to give you a script for that one!
Neither a doctor nor a nurse practitioner has the right to tell you to "Just Do As I Say" and one of the things that doctors and nurse practioners HAVE to do is to LISTEN TO YOU!!
Do stand up for yourself in this matter and let both your doctor and the nurse practioner know that you are an intelligent person who knows your body better than either of them and that they cannot dismiss what you know to be true about your body and your health.
Best of Luck...let us know how it goes
Peace and Blessings
Saysusie

psalm 56 3
11-25-2006, 06:44 PM
I will be looking for a new doctor on Monday! I am not thrilled with this doctor at all. The only reason I have been going to her is because she is an Internist and their practice is considered the "Elite" for this area. Even then she does not listen to me. The doctor does what she wants to do. I stood my ground with the nurse practitioner about "over" testing. I told her I found NO logical reason to have another echocardiogram and lung x-ray done 6 days apart. Then adding to my frustration telling me she wants a CT Scan because she is not sure why I am having migraines!!!

The thyroid test showed that my levels were low. The nurse told me they like to keep it on the low side because it gives you more energy that way!? I have NEVER heard that before! All past doctors adjust it accordingly. I have never ever had to have it tested and then re-tested again without first adjusting the medication. I am almost convinced this is their way of forcing me to continue making frivolous appointments with them. I am also of the opinion they are getting kick backs from the drug companies. There was no reason why she could not let me have the "Free Trial Offer".

I felt like I had completely wasted my time yesterday. I was so angry I came home and cried and then got mad at myself for doing that. I am just so frustrated and my poor husband. He is scared to death something will happen to me and sees that these fools are not doing anything to help the situation. I still have chest pain and breathing is not always easy. Yet nothing is being done!! My hair is falling out at a rapid rate and now looking back I can see why I have been so cold all the time. These are all part of low thyroid function. Geesh, maybe it is my non-existing ulcer that is plaguing me! I thank God for this site, otherwise I would go insane.

MARYCAIN
11-25-2006, 07:41 PM
Low thyroid levels give you MORE energy? What planet did this woman come from? Low thyroid levels CAUSE fatigue, not to mention depression, weight gain, hair loss, muscle and joint pain, cold intolerance, and increased LDL (bad) cholesterol. Women with low thyroid levels are 70 TIMES more likely to have hardening of the arteries than women with normal thyroid activity, and have DOUBLE the risk of heart attack. For women with autoimmune thyroid disease these risks are even higher. And this woman thinks this is a good thing? Run, do not walk to the nearest exit, this woman is hazardous to your health!!! If there is a good endocrinologist in your area, get him to manage your thyroid meds. Or ask your gynecololgist - they often have more experience in this area than most internists. My GYN recommended thyroid hormones even though my thyroid levels were borderline normal, because he says the "normal range" isn't normal for many people, and post-menopausal women need an optimal amount of thyroid hormone to avoid the ncreased risk of heart disease after menopause. And definitely ask around about other doctors. If you have a regular gynecologist, he will probably give you some names. Good luck with the search!

psalm 56 3
11-27-2006, 01:40 PM
AAARRRGGGG.....I had no idea that it could cause LDL levels to increase. Most all of my life my tested level has run around 137-143 the last time I went to have it checked it was 242. I was stunned because I have never had it above 143 in the past. My Internist was well aware of this and she said nothing to me. I assumed it must be okay given my mothers runs high. The technician did however caution me about it. Normally I am a very strong individual but I am wearing so thin. I have not the stamina to continue. I have become depressed which in un-characteristic of me. I assumed it was Lupus, who knows anymore. I am just going to go to bed and let it run its course!

MARYCAIN
11-27-2006, 02:17 PM
Psalm, I understand it's easy to get tired of fighting the system when you just don't have the energy to deal with it. Why not take a mental health break and do something fun with your hubby - then maybe in a day or so you will feel like tackling the good fight again and finding a doctor who will respect your knowledge of your own body and genuinely listen to your concerns. I know these doctors are rare but they are worth the effort to find - like the song goes, before you find the handsome prince you have to kiss a lot of frogs! So don't let the frogs get you down!

MARYCAIN
11-27-2006, 05:46 PM
Psalm, I went back and reviewed several medical journals about high cholesterol - and in every one, hypothyroidism is specifically listed as a cause of elevated LDL levels. So this is something you really need to discuss with your doctor because of your other risk factors for heart disease. Even though we all worry about lupus, heart disease is the number one cause of death for women in the U.S., and as lupus patients we are especially vulnerabble. So you need to find a doctor who will take this seriously - maybe a woman's health specialist or a woman's heart clinic - there are a couple in this area so I'm sure a big community must have more.

When your thyroid hormone levels fall, the liver makes fewer molecules called LDL receptors, whose job is to pull bad (LDL) cholesterol out of the blood. This causes the bad cholesterol in the blood to shoot up, which blocks and harden the arteries, raising the risk of a heart attack. Low thyroid levels can also push up the levels of triglycerides - the fatty acids in blood that also contribute to heart disease.

I know you're tired of dealing with the medical system, but this is so important, to you and to your family! Please try to find a doctor you like and trust, who will work with you to get this under control. Here is a link to some information about cholesterol levels that may answer more of your questions.


http://heartdisease.about.com/cs/cholesterol/a/choltri_2.htm

land1968
11-27-2006, 07:10 PM
I'm totally new to the board so I hope you don't mind my asking, but is it possible that your NP was referring to your TSH level and not a T3 or T4 level? It's my (very) limited understanding that lower TSH levels lean more toward hyperthyroidism and higher TSH levels lean toward hypothyroidism. So it actually might be good practice to want the TSH lower level=more energy.

Otherwise, I just can't understand this at all!

Commiserating with you on crappy doctors--I recently fired my PCP because he kept insisting all of my symptoms are "psychological" without every laying a hand on me, or doing anything beyond absolute basic blood work.

Sorry for such a rough day. :(

psalm 56 3
11-28-2006, 08:19 AM
Thanks for all your help Marycain! I am looking for a new PCP today. My family and I discussed the situation last night and we know it is time for a change. The practice I was going to is supposed to be good, but you will not convince me of this. They have become so large that I feel their bottom line is what is important to them and not the patient. I will go to a smaller practice with less overhead and more concern.

As far as referencing the TSH vs. T3-4 levels I am not certain as to which she was referring. She merely stated, "your thyroid levels are low". Given I have all the symptoms for low thyroid I believe it needs to be adjusted. All previous physicians would ask me how I was feeling and adjust the medication according to what I would tell them and the tests. I know I have never in my life heard of keeping the thyroid low before.

I am really bothered by what you found Marycain. Heart disease runs in my family. My grandfather was the first man to have bypass surgery in this country and soon thereafter he died, he was 55 and I just turned 47 a few days ago. I have been dismissing the pain in my chest assuming it is from the fluid. However; it is a little different from before. I feel an ache literally in the heart that permeates down into my left shoulder, and I still have labored breathing. Every now and then my left arm will ache.

I brought this to the NP's attention and, she asked, "exactly where is the pain located"?
I told her that if you were to remove my left breast it is concentrated right there.
It was at this time she said it was from an "ulcer" (which I do not have). I was very much bothered by that and tried to argue my point without success.
But, I have had these symptoms before. So I am not too panicky and I know, many do not believe as I do, but God willing I will hang on, if it is in fact serious, until I can get a proper treatment.

I really do appreciate all the research and input and there are no words to express my gratitude other than a heart felt THANK-YOU

psalm 56 3
11-28-2006, 08:30 AM
I forgot all about the liver. In the past the doctors have been perplexed because of raised levels of enzymes in my liver. I have literally turned yellow before, especially around the eyes. I wonder if there is a connection? Marycain I am going to write everything down you researched and take it all to my new doctor. You just might be my guardian angel :wink:

land1968
11-28-2006, 08:34 AM
Will your insurance allow you to use an internist as your PCP? I really don't know what, exactly, the difference is--but the level of care I'm receiving from my new internist makes my previous doctor (who was a family practice guy) look like a fast-food drive through.

New doctor also specializes in endocrine disorders, which is a plus and would definitely be good for you with your thyroid issues!

Best of luck, this stuff is so upsetting.

psalm 56 3
11-28-2006, 08:35 AM
The doctor I see right now is an Internist. That is the main reason why I had been going to her.

psalm 56 3
11-28-2006, 01:20 PM
I officially have a new physician! I have not seen him yet but do have an appointment in a couple of days. They are getting my records from the Internists office.
The physician will know why I switched doctors. I am going to be forthright with him and I will hold my ground as never before!!


As far as the prescription goes it was $168.00 for 30 tablets!! That was at Sam's Club. The pharmacist asked if I wanted it filled and I told her no. I explained my reason and she was utterly and completely disgusted!! She said there was NO reason why the other one could not have been honored.

MARYCAIN
11-28-2006, 01:23 PM
I am very proud of you!

Saysusie
11-29-2006, 10:28 AM
Congratulations! And, by all means, stand your ground..stand up for yourself and be pro-active in your care!!

Best of Luck
Saysusie

psalm 56 3
12-04-2006, 08:47 PM
I spent the past couple of days doing vigorous housekeeping. This includes moving furniture around. I would notice that my heart would literally hurt and my left arm would ache, tingle and almost go numb at times. Of course breathing is difficult at that point. I am wondering if anyone else out there is having these sort of issues. Is this typical for Lupus patients and something we should adjust to, or am I pushing my luck? I will be seeing my new doctor in a few days but I am just curious if I am alone in this. Everyone I have asked around me has said they never have any pain in and or around their heart.

My thyroid levels are said to be in the normal range. The NP sent a letter stating that the norm was between 1-5 and mine is 1.05 if that makes any sense.

MARYCAIN
12-04-2006, 09:58 PM
Did the letter say what "norm" she was talking about? Even though different labs may have different normal ranges for tests, I am not aware of any test for thyroid function where the normal range is 1-5. The most common test for thyroid function is TSH but the "normal" range (as established by the American Association of Clinical Endocrinologists, and revised in 2003) is .3 - 3.0. The normal range for Total T4 is 4.5 to 12.5; FT4 is .7 to 2.0; and T3 is 80 to 200. So without knowing which specific test she's talking about, it's hard to judge. But regardless of your thyroid kevels your LDL levels are still cause for concern because they are seriously elevated. So this is something you really need to discuss with your new doctor.

Heart disease can be tricky to diagnose in women because the symptoms and presentation are often much different from men. Doctors are also at fault because many of them do not think of heart disease as a problem for women, and do not realize than a woman's symptoms are often different. So a woman's cardiac symptoms may be shrugged off as stress, depression or even hypochondria. That's why it's important for women to know the facts, so they can make their doctors take them seriously.

Fact - Cardiovascular disease kills about one woman a minute. cardiovascular disease is the leading killer of women over age 25. It kills nearly twice as many women in the United States than all types of cancer, including breast cancer.

Fact - study funded by the National Institute of Nursing Research found that women experience undiagnosed warning signs weeks, months, and even years before having a heart attack.

Fact - Men typically experience the "classic" heart attack signs: tightness in the chest, arm pain, and shortness of breath. Women's symptoms -- nausea, an overwhelming fatigue, and dizziness -- are strikingly different and are often chalked up to stress. Women told study researchers that they had a hard time getting their doctors to listen to them about these early warning symptoms. The five symptoms most often reported by women prior to a heart attack were Unusual fatigue, trouble sleeping, shortness of breath, indigestion, and anxiety.

Fact - Women coming into the hospital for a heart attack have a higher death rate and higher risk of complications. A premenopausal woman having a heart attack has twice the death rate of a man the same age. Women are also far more likely to die within the first year after a hearty attack.

The American Heart Association recommends that a woman's LDL (bad) cholesterol should be under 100 mg/dL, HDL (good) cholesterol should be greater than 50 mg/dL, and triglycerides should be less than 150 mg/dL. This is because low blood levels of "good" cholesterol (high density lipoprotein, or HDL) and high triglyceride levels are a stronger predictor of heart disease death in women than in men.

The American Heart Association has a "Red Dress" program to educate patients and doctors about heart disease in women. I would suggest printing some of the information off their website and taking it to your new doctor. Because you definitely need a thorough checkup and evaluation of your cholesterol levels. Stand your ground and do not let the doctors dismiss your concerns!

Rahbuh
12-04-2006, 10:20 PM
I was reading your posting and wanted to just mention my experience. I was diagnosed at the end of October. One of the first signs I had was a difficulty catching my breath after walking up a short set of stairs. Lupus can attack the lungs and heart, as well. I have mild chest pain on and off and still get winded easily. I have had pain down my arm but it is in the tendons. I see my rheumatologist this Wednesday and am going to talk to him about the chest pains.

My suggestion is that you take it easy and get to see your doctor. (Hopefully, your new one is much better!) Chest pains are not something to be taken lightly. Take care of yourself.

psalm 56 3
12-05-2006, 08:02 AM
First off let me thank all of you for your responses, they are very helpful to me. Marycain, I know my thyroid is on the low side and I need my dosage to reflect that. I have all the classic symptoms for low thyroid function and past physicians have always increased the dosage. Actually they would ask me what I wanted to do because they felt I knew my body better than they did. So there is no doubt in my mind that quality patient care is absent from the practice group I was using. Each time I have gone in there I have come away wondering why I even went.

I will certainly run a copy off the AMA and take it in with me. I am peri-menopausal and heart disease is a strong factor in my family. So in lieu of having Lupus, high cholesterol, low thyroid function, etc. I am counting my blessings, lol! I am aware that Lupus can attack all major organs. As for my lungs, I have no idea what is going on. Hopefully I will be getting some answers real soon. So again thank all of you so much for your words of encouragement!