Aug 06, 2008
So I had a pretty journal entry alllllllll typed out about my wonderful (read: terrible) experience visiting an endocrinologist for the first time, yesterday. Then I accidentally dropped my keyboard but caught it in mid-air, and in doing so, I inadvertently touched a bunch of keys that caused my entire journal entry to get deleted. I'm upset about this, so I'm going to copy and paste the depiction of the appointment that I gave to one of my friends via AIM. I hope this isn't too hard to follow!......
Me: I drove 40 - 45 mins to see the endocrinologist
Me: he was the earliest endo I could get an appointment with (you'll find out why, momentarily)
Me: I was so excited for this appointment
Me: I was thinking, "Yaaaay, I'm going to find out what's going on, get treated, and stop feeling like a mac truck ran me over, then shifted into reverse only to run me over again, ad infinitum."
Me: I get there about 10 minutes early
Me: end up waiting in the waiting room over 10 minutes past my actual appointment time
Me: the nurse takes me in, finally, weighs me/gets blood pressure & pulse
Me: then leaves me & my mom in the examination room
Me: where i wait another 10 - 15 minutes
Me: finally, a RESIDENT comes in and introduces himself as such
Me: he was alright; a little curt but still, he listened
Me: asked about symptoms, when it started
Me: but I knew he was a typical doctor when I mentioned the pineal cyst and he said, "Oh that's nothing."
Me: "those are common"
Me: I stopped him and politely asked, "Uh, common to be this size? I thought it was around 5mm was "average sized"..."
Me: and he responded, "Oh, um, well, yes...but you'd have to get a neurologist to look at that somewhere else, at another time."
Me: I thought to myself, "Wow.........he folded easily"
Me: So I tried to tell him as much as I could
Me: but I forgot some things (because there's just so much)
Me: like gastrointestinal stuff, double-vision (which I'm pretty sure is a separate problem, anyway), dry skin, brittle hair, puffy eyes, etc.
Me: but I got down most of the stuff & explained the bloodwork that was done
Me: so he rushes out at the end of about 10 or 15 minutes of questioning, saying he'd be back soon with the doctor
Me: apparently, "soon" in endocrinology-speak means "half an hour"
Me: so 30 minutes later, I'm almost asleep sitting upright on the examination table
Me: and the endocrinologist and his minion resident finally stroll in
Me: mind you, they had all my bloodwork, except the pituitary labs (which were normal), and they had my images on disks and all the correlating reports from the radiologist
Me: I figured they had pored over these during the last 30 minutes
Me: By George, was I wrong!
Me: the endo strolls up to me and plants himself in a standing position about a foot and a few inches away from my head
Me: my mom said she saw a hearing aid, so that was probably why....but still, it felt very intrusive because he was staring me in the eyes really closely and intently
Me: he introduced himself and without hesitation, launched into a discussion about what I "potentially had"
Me: mind you--at this point, he still thought I had a thyroid problem.......this changes in a matter of 10 minutes
Me: so he starts telling me that some of my symptoms are definitely thyroid related, then says, "...and you have a pineal cyst, right?"
Me: I said, "Yes...." and he said, "Well, that's incidental and I don't know how large it is, anyway....", to which I said, "13mm."
Me: and he replied, "Well, I don't know if it's....it's..."
[Here I launched into a back and forth description with the endo, whom I have dubbed the "j.e.r.k. endo" because I'm so mad at him--I don't feel this way about all endos, though!]
jerk endo: "Yes, symptomatic....so i won't be dealing with that...."
me: "Actually, my headaches have worsened, as has my vision, which includes seeing double vision and night when looking at illuminated road signs and car lights in front of me....."
jerk endo: "Well, you came here with a thyroid complaint...did you not? So i'm going to treat the thyroid problem if there is one, not anything else. You're going to have to see a neurologist for that." (in a snobby tone)
Me: I was thinking "Okaaaay...why the heck were you talking about it then?!?....."
Me: So then he says "Well, there can be a number of things going on with your thyroid right now....at this point, i can't say exactly what.....but your TSH was normal last time it was drawn."
Me: I was like, "Yeah, but it's been bouncing around quite a bit..."
Me: he ignored me and said, "So, you could have thyroiditis, which is an inflammation of the thyroid gland-"
Me: "But wouldn't that mean my RAIU would be greatly decreased--by about 8% below average?...."
jerk endo: "Uh, yes, it would, but....I thought your RAIU was normal...?"
Me: "No..........did you get to see the radiologist's report? It was elevated by about 4 - 5% at 6hrs and at 24hrs."
jerk endo: *shuffles through paperwork*
jerk endo: "Oh, it is only SLIGHTLY elevated. You see that? It's 4.5% elevated."
Me: "So, indicative of hyperthyroidism, right? Which doesn't really match the bloodwork that's been leaning toward an elevated TSH-"
jerk endo: "Well these test results are not statistically significant. Your bloodwork is showing a normal TSH...of 2.7-something-"
jerk endo: "Yes, 2.77, which is normal. They make the ranges for a reason, and yours is very normal. You have to correlate the bloodwork with the RAIU-"
Me: "But bloodwork wasn't done the day I had RAIU done. It had been done a week earlier, that's it. The doctor didn't correlate it with bloodwork...and how is it not statistically significant? I'm outside the normal range, which suggests something is going on.......and my bloodwork has been jumping around all over the place because no one has consistently tested anything BUT TSH!"
jerk endo: "This RAIU tells me nothing, except that you have normal thyroid function. Hyperthyroid patients have elevated RAIU of 70% to 80%, not 40% like you. And TSH depends on the time it's drawn, and this can change; you're still in the normal range so there is nothing there to show me you have a thyroid problem."
Me: "Well, the radiologist thought I was hyper-"
jerk endo: "What did you major in in college?"
Me: "Biomedical Engineering and-"
jerk endo: "Oh, good, then I can give you this analogy. You know about the use of statistics, and when a data point is statistically significant or not, correct?"
Me: *fuming* "....yes...."
jerk endo: "Well, your results aren't statistically significant for RAIU, and your TSH is fine fluctuating like that. It's lab error. They could measure it an hour later and get a very different value, all within the normal range. People who are hypothyroid will have TSH's of 20, 30, or even 90 or 100. Yours is nowhere near that high, and I won't even treat patients until their TSH is close to 10 or higher."
Me: *jaw drops* "So what about my symptoms? Should I have my antibodies reconfirmed since one of them was high-normal--it was measured as <20 with the normal range being <20-"
jerk endo: "I would NEVER order tests to confirm antibodies. The lab does hundreds of these each day; the chances of them getting the wrong value are slim to none. They would have to SWITCH your results with someone else's in order for you to get a different number. That's very very unlikely to happen."
Me: "Don't antibodies build up over time? I mean, people aren't just born with a level of 800 TPO antibodies or something...right?"
jerk endo: "Um, yes, they do build up over time but your normal TSH and other normal bloodwork doesn't give me any indication you have them. The lab results show they couldn't measure yours, essentially."
Me: "Uhhhhh, then why would they have <10 with a range of <35 for one antibody, then <20 with a range of <20 for the other antibody if they weren't measuring and reporting specific amounts? Wouldn't they just put <35 for the other one, too, meaning they couldn't detect those antibodies, either???"
jerk endo: *shuffles through paperwork again and finds antibody bloodwork* "Well, you tested negative for these antibodies; you don't need them tested again and I don't order that ever."
Me: "Ok...so what about measuring the TSI? Or the free T3/T3? I never had T3 measured, but I did have free T4/T4-"
jerk endo: "And those were normal, as of July. So I don't think the problem is in your thyroid."
Me: "Actually, free T4 was measured back in early May and hasn't been measured since. T4 was measured in early July and that was normal, but from my readings, T4 is considered an outdated method for thyroid function evaluation and that free T4 and free T3 are better."
jerk endo: "No it's not. I still use it; the only different between the two is that free T4 shows-"
Me: "-the unbound hormone..."
jerk endo: "Yes. And no, I won't consider testing TSI for you because I only do that with patients whom I think are hyperthyroid, and in my mind, you are NOT hyperthyroid. I don't think you have a thyroid problem."
Me: "....well...how would you explain the swelling neck, the swelling that's now traveling to my clavicle region...."
jerk endo: "Let me feel your thyroid. Tilt your head forward."
jerk endo: *forcefully squeezes the nether-regions of my neck* "Swallow. And again, swallow."
jerk endo: "Nope, I do not feel inflammation in your thyroid. This swelling here is your muscle [insert fancy name of muscle]. Your problem is not your thyroid; I think it's musculoskeletal. The dry eyes and dry mouth that you get are fitting for this-"
Me: "I don't get dry mouth..?"
Resident: *panicked voice* "I thought you said you did"
Me: *calm voice* "I said 'not really' and that if I did, it seemed to be from a medication I was on, but it's not frequent at all...and my dry eyes are only from wearing contacts too long that dry out (the resident had asked me this earlier--if my eyes ever feel like sandpaper, and i said "no" to this a few times, because it doesn't happen)
jerk endo: "well, it's musculoskeletal, so you'll have to see another specialist in that area."
Me: "There's nothing you can do to check my thyroid more at this point?!?! What about biopsying it...the ultrasound said it was heterogenous on one side; the same side that has less uptake..."
jerk endo: "Your ultrasound was fine. You don't have any abnormal results. In fact, the size of your lobes was normal and didn't differ much...let me see....*shuffles through more papers*"
Me: "Yes, but the heterogenity-"
jerk endo: "Here we go...see? These dimensions don't differ much. The ultrasound is nothing significant. Nodules would indicate a potential problem, like cancer, but you don't have any."
Me: "But wouldn't a biopsy of the heterogenous area show if there are any abnormal cells present?? Just to be sure?"
jerk endo: "No. Cancer presents itself in a nodular form."
Me: "So...it can't just be cancerous tissue? There HAS to be a nodule present? I thought-"
jerk endo: "Well, that's the way it happens. Your thyroid isn't even enlarged, so there's no problem with it."
Me: "The GP said it was inflamed...one side is brighter than the other on the RAIU scans. I also read an article by Columbia doctors who said they had patients with thyroid cancer--65 of them--whose cancer presented as cancer within the thyroid cells or sub-millimeter nodules that weren't picked up by the ultrasound of the thyroid, so I think it IS possible to have cancer-"
jerk endo: "I haven't read that; it's highly unlikely."
Me: "Um...so you won't check TSI or anything else?"
jerk endo: "I don't think you need bloodwork at this point. In fact, I would have NEVER ordered the RAIU or the MRI having seen your bloodwork, so I don't know why this was done. Your bloodwork is normal and gives no indication of the problem being your thyroid. It's musculoskeletal, which explains the joint aches/swelling, dry eyes, and dry mouth, and swollen neck."
Me: "Is it possible to have a patient with, perhaps, autoimmune thyroid disease but not positive TgAb or TPOAb? But have other antibodies present?"
jerk endo: "No. I've never seen it."
Me: "Well, that doesn't mean it doesn't exist, right?....."
jerk endo: "Half of my patients I see every year I see for thyroid problems. I've never seen that happen."
Me: "Well, the endo online said it was possible, and another person recommended I keep searching for antibodies because they think mine haven't been found yet-"
jerk endo: "No, I don't think you have a thyroid problem. I will look at your TSH and fT4, but there isn't anything else I recommend at this point because your bloodwork is normal."
Me: "There's nothing else you can do? All of these symptoms are going to keep getting worse...and my TSH is fluctuating and the endo online said that fluctuations greater than 0.75 I would feel..."
jerk endo: "We could argue about this all day, but I'm telling you that you don't have a thyroid problem. You should take up the individual problems with other specialists, like your gynecologist and a rheumatologist, because I think it's rheumatological. The RAIU is useless and your bloodwork is normal almost every time. I WON'T look at T3 because that's not useful-"
Me: "But I read articles about people with all normal bloodwork, including TSH, until their T3 was tested and it was sky-high-"
jerk endo: "No, that is not my procedure. We'll have you get a TSH and fT4 reading today, then again in 3 - 4 months when you return for a follow-up. You should get another ultrasound in a year, but until then, there's nothing I can do for you."
Me: *stares at him for a full 10 seconds, not knowing what to say*
Me: "Alright, I guess...we'll just get that bloodwork..."
jerk endo: "Follow me so I can write the script and give it to you."
jerk endo: "Do you want the name of a rheumatologist?"
me: "No thanks, I already have the name for one."
jerk endo: "Ok. Have a good day."
That wasn't nearly all of it, but that was a good chunk of the conversation. Kudos if you read the whole thing and could follow it!!! The endo didn't seem to care about my raised clavicle, telling me matter-of-factly that it wasn't the "thyroid" or related to the thyroid-region swelling and that since he is only here to treat the thyroid, he wouldn't deal with that. He also didn't care that the tissue near the top of my breasts (closest to my neck) was getting denser and starting to "dimple"; he got angry when I asked if it could be a systemic illness slowly affecting one area after another. He also ignored the point I made about the Columbia endocrinologists recommending a full-body CT scan. He just said, "That's a lot of radiation," and gave me a *are you stupid or what???* look. At this point, I'll take the risk if it means feeling better! I'm getting worse by the day and I'm expected to start grad school in a few weeks, which means tough classes, thesis work, and research. I won't be able to handle it if I can't get a hold on my health, soon.
Actually, at the very end of my visit, when he said we could argue all day but that it wouldn't change his mind that I didn't have a thyroid problem, he said he'd order some bloodwork and that I should meet with him again in 3 - 4 months. I'd like to know why he bothered ordering the bloodwork if he was so sure I didn't have a thyroid issue, and why he spend 30 minutes (maybe more if you count the time the resident was questioning me) reviewing my case if it was obviously not a thyroid problem.
I'm glad we have websites such as this one where we can gather to learn about our own health and connect with others suffering from similar conditions. I can't imagine how much the doctors were either hiding from us or not considering when dealing with us back in the days when internet wasn't readily available at our fingertips. I'm glad I know what's going on, enough to never return to this endocrinologist again!
I got TSH and free T4 tested, and blew an entire morning and part of an afternoon traveling to this appointment, waiting, having the appointment/more waiting, and then driving home, and then driving to work. It was a waste of my time, quite frankly, because the minute I pointed out (gently!) that he might be wrong about the RAIU when I told him thyroiditis probably wasn't an option given my elevated RAIU (thanks, 898!!), he became defensive, snappy, and didn't want to deal with me or admit he could be wrong about something. I definitely won't be going back to him, but he ordered bloodwork for TSH/free T4 twice--yesterday, and three months from now, so I'll use those to give me additional information about my condition. I'm actually interested to see what the TSH is, at this point.
Any thoughts? I can't believe I'm still no closer to figuring out what is going on, except it seems like I need a whole slough of specialists at my fingertips. This is no fun AT ALL. :(