Doctor frustration

[indysteel]

Is the sluggishness the main symptom? Was that the original reason you thought there was something wrong? Did anything improve with the meds?

Maybe you should keep a journal to see if you can find patterns or triggers.

Long story short: My annual bloodwork last summer showed a suppressed TSH--which is consistent with hyperthyroidism. I had some additional tests done and was ultimately referred to an endocrinologist. My sister has Graves' Disease (an autoimmune issue that causes hyperthyroidism), so I wasn't surprised when the endo told me that I, too, had GD, albeit in a mild form. At that point, I didn't know a ton about what the various blood tests reveal about the severity of a particular case or what type of values warrant what type of treatment, so I wasn't able to ask the right questions.

At the time, my hyper symptoms were relatively minor but noticeable all the same. I was mostly concerned about an elevated heart rate and what the meant in terms of exercise. Often they treat mild or subclinical cases of Graves' with beta blockers rather than anti-thyroid meds. I remember my doc saying that she didn't want to use those with me because I typcially have low/low normal blood pressure. Instead, she put me on a relatively low dose of anti-thyroid meds. That seemed like a decent decision at the time but, in retrospect, I'm not so sure.

From the start, the meds oversuppressed my thyroid, so I went from mildly hyper to mildly hypo. I started reading up on what to look for in blood values and, in so doing, realized that my doc wasn't necessarily interpretting my blood work correctly or focusing on the right numbers. So, she's allowed me to persist in a hypo state far longer than she arguably should have. I've had to push her a couple different types to lower my dose of the anti-thyroid meds. I've complained to her assistant (because I rarely talk to my doc directly) about some hypo symptoms (heart palps, hives, constipation, hair loss, weight gain, dry eyes, fatigue and sluggishness) and was told "not every problem you have is necessarily thyroid related." It's been hard to find my voice with this doc's office.

That said, I think we are likely headed in the right direction in that I have been able to cut my meds and will likely stop taking them altogether at some point down the line. I'm just irritated that I've been the one to push for that. I've even had to push to get the right blood tests in the first place. We're just not on the same page. Ultimately, whatever errors in judgment my doc made (or didn't make) have not lead to grievous injury. It would just be nice to feel like she truly understands the disease and how to monitor it. Some of the conversations I've had, via her assistant, suggest to me that she perhaps doesn't fully understand it. Unfortunately, the vast majority of endos out there, only dabble in GD. They spend more type dealing with diabetes or non-immune related hypothyroidism.

[Catrin]

(((Indy))) I do hope you are feeling better soon. Can you find another Endo?

[indysteel]

(((Indy))) I do hope you are feeling better soon. Can you find another Endo?

Not yet. I have a name of somebody else, but his office is in Fishers and I'd really prefer somebody a little closer. Part of the challenge is finding endos in this city and, then, getting an appointment. It's not easy.

[redrhodie]

Well, it does seem like you're getting closer, at least. I've been spoiled by great doctors, so I notice when one isn't up to par. My oncologist is just okay. Her personality and bedside manner are good, but I felt like she's lacking some info. Of course, with the Internet as my medical training, I know everything. Like when I asked about med interactions, she said there were none. I don't believe that's true.

[indysteel]

Well, it does seem like you're getting closer, at least. I've been spoiled by great doctors, so I notice when one isn't up to par. My oncologist is just okay. Her personality and bedside manner are good, but I felt like she's lacking some info. Of course, with the Internet as my medical training, I know everything. Like when I asked about med interactions, she said there were none. I don't believe that's true.

As a lawyer, I appreciate how frustrating it can sometimes be when non-lawyers feel expert in something just by reading something on the internet. That's not to say you have to have a law degree to understand a legal issue, but often the issue is more nuanced than it would first appear.

So, I have tried to tread lightly when it comes to my doctor and her approach. I'm obviously not a medical expert, and I really only take issue with a couple glaring mistakes. Mostly, my issue is with her communication or lack thereof. I've felt rushed when discussing things with her or forced to speak only to her assistant. I know my case is minor and for that I'm grateful, but it doesn't mean that I want to be brushed aside so easily.

In any event, I'm FAR less upset about this than I was a few weeks ago, so that's good. I was given a bit of extra perception today in reading a thread on a different cycling forum (RBR) about a man with a toddler who had delayed development and behavioral issues. Their pediatrician has insinuated that the parents themselve are at fault. Well, the child recently fell and was referred to a pediatric plastic surgeon. In looking at his x-rays, that doctor immediately diagnosed the real issues--something to do with a misformed cranium. Further testing confirmed the diagnosis and the child's prognosis is good with the right medical intervention. The father is struggling with what to think and feel about his original pediatrician--with good reason.

[GLC1968]

Indy - I'm glad that you may be getting to the bottom of this! I will agree that having the right doctor is CRITICAL. And it's not just for their knowledge, but for how they interact with you. Everyone is individual and not all personalities match.

I had a doc in FL (OB-GYN) who I liked a lot. He also was my mom's doc. In fact, I tutored his daughter in algebra. We had a good relationship. The problem was that when I developed uterine fibroids causing massive bleeding spells, he had no answer. He tried to control it with hormones - including depo provera which is exactly the LAST thing he should have attempted. In fact, at one point, he suggested that I'd be 'cured' if I just got pregnant....and he suggested that both to myself and to my mother (which was a huge red flag for me!). He was guessing and it pissed me off.

When I moved to NC and had another massive (and incredibly embarrassing) bleeding spell, I got an appointment with the first doc available at the clinic a friend recommended. He immediately asked if I'd had a recent ultrasound. When I said no, he was shocked. One look and sure enough - obvious fibroid. Two surgeries later and the problem was completely gone.

My mom still sees that first doc and he appears to have zero clue how it should have been him who discovered such an easy diagnoses.

And I also agree with whomever said that younger docs seem more receptive to my suggestions/questions. In fact, I make a point of researching my doctor's age or degree dates before making appointments because I find it makes such a huge difference.

[indysteel]

GLC,

You are one of several women I know who have had the same horrible experience with doctors who mistreated/misdiagnosed fibroids. I don't get why doctors are so quick to write something like heavy, irregular and/or painful periods as basically normal. They're not normal.

One of my friends went through an insurance nightmare because she changed insurance companies after she's first told her OB about her heavy periods. Her doc wrote it off as perimenopause. So, when she switched insurers, she didn't reveal it as a preexisting condition because it hadn't been diagnosed as such. Well, it turned out she had a massive fibroid that required immediate surgery. The insurer refused coverage, and her appeal was denied.

[shootingstar]

I think I found a family doctor that I like...whew. That was just yesterday. I am relieved. In a city where there is demand because the population is growing fast.

I try to provide to useful info. that the doctor asks. It doesn't help any doctor to be too vague and careless in one's own memory of symptoms. A doctor cannot read your mind.

Being at the doctor's appointment, it is important that a lay person, remains alert and sharp to think of and ask questions as the doctor provides information. You are paying for this professional...through whatever health care insurance system you use. That's how I treat the whole visit....glean as much information as I can out of the doctor that's relevant to me. It is precious valuable time.

Be sharp, ask and think (rather quickly) of the right questions right there on the spot with whatever information you may have learned yourself prior to the appointment. This way of thinking has helped me alot in my doctor interactions. Don't allow yourself to be intimidated by any doctor specialist...but you must think of good questions...on the fly within that 15-25 min. visit.

Then I might go home and phone up a sister who is a doctor...and ask for a 2nd casual opinion. I just want to reaction out of another professional on the recommended treatment. I usually do get abit more information from sis.

But even with all that, some doctors just aren't expert/knowledgeable in certain areas.

[redrhodie]

Good points, shootingstar. For my major doctor visit, I actually brought a friend, and she took notes. She and I had also written down a bunch of questions, because I'm notorious for forgetting the things I want to ask. Even with two of us listening, there were some things we missed. It would have been overwhelming alone.

[jyyanks]

Indy - I'm very sorry for what you're going though but I'm glad it seems like you're headed down the right path.

I read your story above about the guy who's son was misdiagnosed and am going through something similar. My 6 year old son (now 7) was diagnosed with Benign Rollandic Epilepsy in July. He was put on medication which worked at first but then, he started having more seizures. His neurologist increased his dosage and he started having cognitive issues (forgetting his uncle's name, not remembering what "sneakers" are, not able to pronounce words that he never had trouble with, performing poorly in school etc). When I brought this up to the Dr, she simply said that it was the medicine and changed his medication. Unfortunately the problems continued and got worst! To be honest, I was really uneasy as she did not really want to address my concerns and seemed to be blaming everything on the meds.

Long story short, I went to a new neurologist yesterday and she was surprised that my old doctor didn't perform certain tests to completely rule out other things. She suspects that the diagnosis is not 100% correct. This new doctor is the head of the department in a major medical facility and has done a lot of clinical research on epilepsy as it relates to behavioral and cognitive issues. We are scheduled for more intensive testing in the next couple of weeks and although I'm worried, I am relieved that someone wants to get to the bottom of things and find the right treatment for my son.

It just goes to show that you have to trust your gut when it comes to your health and keep looking until you find a doctor who listens to your concerns and who you trust. Getting a second opinion is worth it, and can be life saving in certain instances. Even if your original doctor is spot on, at least you get the peace of mind and reassurance when their diagnosis and treatment is re-affirmed by another expert in the field.

[indysteel]

I am sorry to read of your situation. How scary. I sure hope you get answers soon. Hugs to you and your son.

[shootingstar]

You know, at times, listening to the doctor is hard enough....my doctor-sister was trying to explain to my mother that really there is no cure, not much prolonging of life (beyond 18 months to 2-3 yrs.) for my father with cancer.

[WindingRoad]

Indy you doing OK?

[indysteel]

More or less. I've been moody the last couple of weeks, which may have absolutely nothing to do with my thyroid ad everything to do with my tendency to stress out over everything. I've also been really tired, too (and no, I'm not pregnant!). In any event, I have to get new bloodwork this week in anticipation of an endo appointment on the 16th. I'm eager to see where I am.

Thanks for asking, WR. I really appreciate it.

[Catrin]

Crossing my fingers for you IndySteel!