Another Tale of Medical Stupidity (Mild but Sad)

The BBQ Pit
1

For the last few months, I have been watching as I have developed more and more of the textbook symptoms of hypothyroid disease. The biggest are an incredible fatigue – there have been days when I have slept for 20 hours (thank God that my husband is a stay at home parent too) and awakened unrefreshed – and a pretty debilitating depression. In addition, I’ve had everything else on the basic list from dry skin to swollen legs. It’s been so ridiculously “Yes, I have that!” that I could be a living display at an endocrinology seminar.

I went to see a new doctor for the first time a couple of weeks ago. Since we moved last year, I haven’t been to see a GP, and when I called my GP down in the city, I found out that she moved! I asked around and heard a couple of good reports about a doctor who has an office right here in my neighborhood, and he was covered by my insurance, so I made an appointment and went on in.

When I went in for my exam, I got the usual history and complaint questions from the nurse and enumerated my symptoms to her. She said “Hmm, sounds like the thyroid to me!” I agreed and said that I had fasted for twelve hours in the hopes of having a blood test.

The doctor came in, and looked at my symptoms, did the usual poking and prodding and said “Well, it could be your thyroid, but it’s more likely just postpartum depression. But I guess it can’t hurt if we go ahead and check your thyroid anyway, you’ve got good insurance.”

I was gobsmacked by this on multiple levels. Not only didn’t I appreciate the implications of the insurance comment, the “just” PPD thing was way out of line. There’s nothing about PPD which should ever have it referred to in such a dismissive way, first of all. Second, I don’t have many of the symptoms of PPD. Third, most of my (physical) symptoms aren’t among the diagnostic markers for PPD.

Fourth, my kids aren’t the problem, they’re the solution. Women suffering from PPD tend to feel a lack of interest in their children or that they’re incapable of giving their children proper care. I’ve felt just the opposite; taking care of my babies is the one thing that is fairly guaranteed to bring me some happiness and lately, it feels like the only thing I’m competent in – and I mentioned that to the nurse and I saw her write something along those lines on my chart!

Most importantly, one of the causes of PPD is hypothyroidism! Any woman complaining of symptoms that could be PPD should be screened for thyroid disorders as part of the diagnostic process because of the way that the thyroid can be affected by childbirth – up to 10% of women experience some thyroid problems after giving birth. The fact that the doctor was so dismissive of the idea of testing my thyroid level made me wonder if he was aware of this. (And why I was aware of this when the extent of my education on PPD is a pamphlet I read in my ob/gyn’s waiting room.)

So blood was drawn and 48 hours later, I expected a phone call. When I hadn’t heard by the next morning, I called the doctor’s office.

“Oh, we didn’t call because all of your test results came back normal.” said the nurse.
“Normal?” said I, confused.
“Yes, let’s see, your TSH level was 4.2. Normal is 0.4 to 6.”
“So my TSH is normal, but what about my symptoms. Something is wrong with me, or is it all supposed to be in my head since my blood test results were okay?”
“Uh, I don’t know, I just know that nothing is wrong with your thyroid and the doctor hasn’t ordered any follow-up.”

So I’ve spent the last two weeks noticing every symptom all the more and thinking (remember, I’m depressed here, so forgive the maudlin nature) okay, I’ve got this but my thyroid is okay, so what’s wrong with me? I’ve spent several hours crying in my bed, alternating between believing that I had some dread disease that isn’t diagnosable via blood tests that is going to kill me and feeling like I’d rather be dead than to feel so utterly crappy all the time. I felt hopeless. I felt angry. I felt sad because my babies and my husband have had to deal with me being this way.

Then today when I was at the library, I decided to read a little more on thyroid disease. And I found out something. The normal TSH level never was 0.4 to 6, it was 0.4 to 5. And in November 2002 those guidelines were revised, and TSH levels are only considered to be in normal range when they are 0.3 to 3.04.

So with a TSH level of 4.2, I do have have hypothyroidism within a treatable range. And this doctor, this moron of a doctor (and the people working for him) are nearly two years behind the curve when it comes to knowing how to properly diagnose hypothyroidism, a disease that’s common enough that any GP ought to know the basics like what the numbers on the little test result papers mean.

I spent several months wondering what was wrong with me and not seeking medical care. That’s my fault. But the last two weeks of wondering, fretting and being scared, sad and worried? That’s all on you, Dr. “Just PPD” and your inability to know something that I can find by simply Googling “normal TSH levels.”

I hope that one day you’re sick and scared and someone leaves you spending weeks misdiagnosed and having to wonder what you’re going to do because they couldn’t be bothered to know what the standards were before they “interpreted” your test results. Then you’ll know.

Tomorrow I’m going back to the city to see the partner of my former GP. I’ll stop on the way to pick up my test results from the idiot. From the phone discussion I had with the partner, I expect that I’ll come home with a prescription in hand, which is all I ever wanted (or needed).

It should never have been so hard.

2

As soon as he got to the

I would have walked. But that’s me.

My little story goes thusly: I have had skin problems pretty much all my life. Shortly after I moved to Indiana I developed a skin infection. I’ve had these before, even had surgery to drain one, once (in fact, it had just been a couple months before we moved). Anyhow. The new doctor was very concerned (which was good, I suppose) but also jumped to the diagnosis I had diabetes.

Now, that is not entirely unreasonable - diabetics are prone to skin infections, 'tis true. However, I also knew I did NOT have diabetes. Well, the doc doesn’t know me. I explain to him that I had been screened multiple times for diabetes and had never shown any signs of it. In fact, I had been screened about 6 months before for my FAA physical. No problems.

Well, he waved that off, and started down the whole list of questions - how much fluid did I drink? How much did I urinate? Was I thirsty all the time? Seemed almost puzzled at my answers, repeated the questions several times. Then we got onto family history. He asked me how many of my relatives had diabetes. I said none - and it’s true, I have NO blood relatives with diabetes. Not one. He flat out said he found that hard to believe, asked if any of them referred to having “the sugar”, and so on… I told him that my family took some pride in being educated and always referred to diseases and conditions by their proper names. No, I had no blood relatives with diabetes. None.

He asked me if I was adopted.

I asked him if he was going to do something about this infection I had.

Well, he gave me some antibiotics, but insisted on testing me for diabetes, muttering something about some doctors are idiots and don’t know what they’re doing. Full nine yards, fasting and everything.

OK, couple days later I come in at 11 am in a foul mood because I’m HUNGRY - which, of course, this doctor sees as a sign of diabetes. They draw blood. I go out to get some lunch.

Results came back spang in the “normal range”. SURPRISE!!! I don’t have diabetes.

The doctor says there must be some mistake… with my skin problems I have to have diabetes, so he wants to schedule me to re-take the test. I told him there was something wrong with his diagnositc skills. Clearly I don’t have diabetes, if there’s something wrong with me it MUST be something else, and don’t expect to see me again.

So I went elsewhere. (And fortunately I haven’t had nearly so many skin problems since we’ve been in Indiana). So far, every other doc I’ve consulted has either muttered about sometimes a person is vulnerable to something for no clear reason, or speculated that my eczema/dermatitis/allergy problems cause so many rashes and other similar problems that my immune system gets worn down and what with the breaks in my skin it all leaves me a tad more vulnerable than average to infection. Which at least makes some sense.

There was a few weeks when the idiot doctor kept calling the house, desparate to get me back into his office to treat my “diabetes” but I finally convinced him to leave me alone.

3

Once upon a time, I suffered a minor injury at work, and was sent to see a doctor.

The doctor asked me if I was paying for it myself, if I was using my insurance, or if it was workman’s comp/workplace covered. I replied that it was the latter.

He then decided I should come in weekly, for two months, to have my boo-boo looked at, at a charge of over $50 per office visit, which my boss would have to pay for.

Moral: whenever a doctor talks money, I walk. Whenever a doctor talks insurance, I walk. The doctor should be interested in my PROBLEM, not my money. Money is why he has those people who work in the outer office.

Go get 'em, hon. “Second opinion” should be your watchword.

4

TeaElle, I’d get a second opinion, too. If your insurance allows it, go directly to an endocrinologist; many of them function as primary care providers. Bring along a copy of your medical records from this doctor.

That said, some doctors can’t see the forest for the trees. They’re so fixed on a) a diagnosis du jour (as with post-partum depression; post-Andrea Yates, no one wants to miss that for fear of similar consequences happening), or b) a single possible diagnosis for one symptom that they won’t consider the differential.

Not that this should make anyone feel better. It’s still pretty shitty care, and Lord knows I’ve had my fair share of similar care.

Robin

5

The comments of the first three posters are simply a reflection of modern life and an indication of ‘How Medical Standards have fallen’. i have had a thyroid condition for 30 years, i have been tested and the results were normal, but to date no docter has been able to tell me why in warm weather i am absolutely freezing. I feel cold. i have mild depression - but depression tablets including that well know one that was all the rage did no good whatsoever. I am printing out posters number 1 information and having another blood test. Thank You.

The skin condition lady: You might have an allergy to the dye in white bread. i know nothing about bread making and assumed white bread is white because they use white flour. I was wrong they use a dye, so that your baker can boast whiter than white bread than brand X. The dye causes skin conditions and flaky skin on the rear elbow joint.

In 1994 i had problems with my eyes, constant blinking, constant squeezing of the eyelids together, its k/as the long blink, well one day my eyes just wouldn’t open. I say wouldn’t, but with effort they did. i also had UV blindness. i could not go out in the sun. Real bad. Of course being a clever clogs i tried dark glasses, hats, vizors, welding glasses, snow sking glasses.[ did i look smart in them] nothing worked. My dr said it was my age 53, male, that it happens, nothing to get worried over. By that time i was having to sellotape my eyes lids to my forehead to keep them open. i also developed a facial tic, and mouth tic. i changed Drs and the new Dr really took no notice of my problems, he said it was stress - take these happy pills.

I went to a firm called Specsavers, Opticians, the Optician took one look at me and panic stations, How long have you been like this he asks’. O’,says, I about 4 years, I am sending you now to an hospital as an Emergency. You’ve got serious condition called Blepharospasm’, uncontrollabe eye blinking and closing, a neuro disorder. At the hospital i was treat has the new Circus Freak, no one had ever seen anything like it. In no time i had 6 young Doctors giving me a look over, after the examination I could hear them talking and laughing in the corridor about me and my condition. They were laughing which rather hurt. I will skip the next 5 years, the pills, the injections, the overdose of Botox. I still have my dying will deathbed bequests doc, please accept I packed in their lunatic treatment and started treating myself, Yes, i succeeded. i cured myself. Must add, my expert, my consultant, i was his first ever patient with this condition, he was sat their posing, not having a clue what he was doing.

i reasoned that if the underlying condition was caused by dry eyes, then i would drown my eyes in water, treat them like a dried out plant. So i bought a eye drop bottle, 2 pouches of saline distilled water and drown them. It was comical, water everywhere, eyes full, every 2 hours, again, again, the next day 24 hours later i came down stairs and my wife screamed ‘Your eyes are open’. It must seem daft but i hadn’r noticed, iwas so used to being haldf-blind. I went back upstairs and saw myself in the mirror, i could actually see my eye-balls. My eyes were open.

I continued this treatment, my eye nerves are damaged, i still have good and bad days, but saline water seems to keep it away. In the USA my medical bills would be enormous, here they are free, England, but i cured myself for about 3 dollars. The Health Service probably wasted $40 000 on me. PS: I was diagnosed functionally blind, and on 100% disablement. Thats how ill i was. I am 85% free now.

A good health tip, lower your sugar intake, and [this sounds stupid] imagine you have just run 2 miles, your seriously out of breath, your gasping for air. Now, you know what to do, start. go through it all as if you have run 2 miles, take good breaths of air, tell yourself thar run was great, fantastic, now relaxm get your breath back. Without leaving your chair, you can ‘‘run’’ 4 -5 miles per day. and the mental experience works. Its poor lung power thats behind most health problems, and you can trick your body into going along with the idea your a half-marathon runner. They it, but not big big breaths, but shallow small - quick - quick - quick am i out of breath, breaths.

TRUE - BRIT. MALE, LEEDDS, FARMER, AGE 63.

6

The recommendations of the American Association of Clinical Endocrinologists are still relatively new and somewhat controversial. If you search around the web, you’ll find different statements as to what represents the upper level of normal for TSH (including a level of 5.5 listed by the Cleveland Clinic). This depends in part on the particular test methodology used.

The AACE also says that treatment should be considered, but is not mandatory for elevations over 3.04 (someone with significant symptoms of hypothyroidism is obviously a better candidate for therapy). While TSH is the most sensitive front-line test out there to detect hypothyroidism, there are others that can provide useful information (i.e. T3 and T4 levels, and antithyroid autoantibodies).
I’m speaking here as a pathologist from the laboratory medicine point of view. If I had classic-sounding symptoms of hypothyroidism and that kind of TSH level I’d want to get it checked out further.

I hope TeaElle gets a good evaluation by a doc with more people skills and is feeling better soon.

As to the insurance comment by doc #1, it could be that he has gotten a lot of feedback from patients about “unnecessary” tests that they can’t afford, or sees a lot of underinsured patients. I still wouldn’t have appreciated that comment much either.

7

IANAD but I’ve had thyroid disease for a long time, so take this FWIW.

TSH alone means little. Your slightly elevated TSH could mean you’re hypothyroid, but it also could mean you’re hyperthyroid or euthyroid. Thyroid Stimulating Hormone is produced to tell your thyroid to produce more. Its just one piece of the puzzle. To find out definitively, you need your T3 and T4 checked, among other things, and you haven’t mentioned any of that. You don’t mention whether or not your doc palpated any lumps on your gland. An ultrasound and/or nuclear scan would also need to be done if your complete profile is abnormal.

I cannot overstate how important it is to make absolutely certain that you have the correct diagnosis before beginning a lifetime regimen of hormone therapy.

In my case, my T3, T4 and TSH were normal and I still had to have most of my gland removed.

This is not something that should be handled by a GP. Go see an endocrinologist.

Good luck. I hope everything works out OK and be sure to report back. I feel for ya :slight_smile: .

8

I think that regardless of what you do have, the fact is, you don’t feel well and it’s not going away - the doctor should have taken your complaints more seriously. I probably would have left after the insurance comment, but if you’re not feeling well, the last thing you want to do is trek to another doctor for another opinion, I’m sure.

I hope everything starts improving for you - if you do discover that it involves your thyroid, I’ve got friends who swear by a low-carb lifestyle (a more moderate one, not Atkins) for their hyper-or-hypothyroidism. Obviously, IANAD, but they do swear that they feel better and it keeps things under control for them.

Good luck!

Ava

9

TeaElle, anytime a doctor refuses to listen to your concerns, or belittles your problems, it’s time to see a different doctor.

Granted, I grew up in a family with rather more than usual exposure to medical practices: My mother’s an RN, and my father had been an acting IDC corpsman in the Navy. I’ve always expected that the patient is a partner in treatment.

The worst problem I’d ever had with the sort of attitude you’re talking about was while I was hospitalized for depression several years ago. The nurse practitioner who was covering blood work spent the whole time she was working with me concerned about diabetes, chloresterol, and STD’s. Everytime I answered a question she would give me about my health history, she would get this grimace, ‘Oh, another lying fat slob.’ As one reason I had been depressed was being a 28 yo virgin, this attitude rather incensed me.

In short, while she may have had some good advice for my general physical health, her attitude did more to prevent me from improving the conditions she was concerned about than any thing else I could consider.

BTW - I would like to state, I’m not criticizing the woman because she was a nurse practitioner, just because she was a jerk. :wink:

10

While on vacation in Tennessee, my wife developed a set of swollen legs so bad that the skin would crack and ooze plasma. I took her to the ER, and the diagnosis was salt poisoning (she was living almost exclusively on potato chips and pretzels at the time). However, while examining her, the doctor got into quite the discussion of her lupus and other problems, then announced that if she would change her diet, that would cure the SLE and all the other medical conditions she had. After all, all disease is based in poor nutrition.

If you’re so fucking smart, Doctor, why are you pulling a shift in the ER, and not out solving the world’s health problems once and for all?

Then there is my doctor, with who I am battling constantly over my attempts at weight loss via Atkins and exercise. He doesn’t like the Atkins diet to the point that he actively counsels against it; I find it a natural for me because I’m diabetic and it helps regulate my sugars, plus it’s easy to remember what I can and can’t have…

11

Cite?

I am unable to find a listing of Wonder Bread’s ingredients on the Web, but AFAIK, white bread is white because they use bleached flour, white shortening, and other coorless ingredients. There is no dye that will make bread “whiter,” and I have never heard bakers boast of their bread’s “whiteness.”

12

vunderbob–IANAD, but I am concerned…the whole goal of Atkins strictest low-carb diet (from what I understand) is to induce ketosis, which burns your body’s fat, rather than storing the extra calories as fat. And for diabetics, ketosis is way too easy to achieve and is a Bad Thing.

13

Ketosis and ketoacidosis are not remotely the same thing.

Ketosis = perfectly natural state of body burning fat for energy when glycogen is unavailable
Ketoacidosis = very dangerous condition of diabetics being unable to use blood sugar and burning body fat instead

Just FYI.

14

For a really good look into problems in medicine, check out this book:

Complications: A Surgeon’s Notes on an Imperfect Science

Here is the Amazon.com review:

I bought this a few months ago and found it a fascinating read. Seems to fit well with the topic here as well.

Hope you feel well soon TeaElle !!

15

The T3 and T4 were normal in relation to the “normal” TSH. Viewing the TSH as being off, the T3 was also indicative of hypothyroidism. (The T4 is not as off kilter as the other two.) I just got back from the second doc, and he looked at all of the results and said “There’s no question what to do here.” There are no abnormalities in the gland that can be palpated, but the hormones are all skewed, and so I’m starting a trial regimen of Synthroid tomorrow morning, with blood test to follow in six weeks.

As my new GP :slight_smile: said “This is a place to start.” Seeing if we can get the hormones within therapeutic levels with this drug and this dosage cannot hurt, if they don’t help, there are other options, and that’s all I need – someone willing to explore the options with me, in an effort to actually restore me to health, not someone who is utterly incurious and could care less.

I’ve decided to send Dr. “Just PPD” a lengthy letter containing many of the points in my OP. He needs to know exactly how he let me down, with the hope that he won’t do it to anyone else.

16

Teaelle, that’s good news.

I have to say that an endocrinologist is the expert on metabolism. I think your GP has the best of intentions but may be limited in his or her experience. But you’re both right, its a start.

About ten years ago, I went to my GP because I felt like there was something stuck in my throat when I swallowed. He felt my neck and said he thought there was a mass. I had no other symptoms. He sent me for an emergency consult to an endocrinologist. I myself was never able to feel the mass they described.

I was worked up for thyroid disease. All my blood work was normal. My uptake scan and ultrasounds showed what they called cold nodules. I remember him telling me that once I was started on hormone therapy, I was on it for life.

After many painful biopsies, I had to have surgery to remove all but a small piece of the gland. It turned out to be precancerous cysts known as follicular neoplasms.
I have enough gland left to live on, but I take hormones to keep my TSH near zero. That keeps my thyroid from producing hormones, thus decreasing the chances that any new masses may form.

Your problem seems completely different. I would want someone with more experience in the art of palpating the gland to take a look at it before going any further. What if its not your gland at all? I think you are due an explanation as to why, if your gland appears normal, you need to suppress or augment it. Hormone therapy will lower your TSH, but what if the problem lies elsewhere, like in your pituitary or adrenals? How will they know if in the end all they are doing is masking the symptoms?

I’m sorry if I’m coming off as a know-it-all, and I could easily be way off here. Its just my personal lay experience. You can’t lose by seeing an expert. If everything’s peachy six weeks from now, ask, demand an explanation in terms you understand, why. Ask why, all else being at or near normal, do I require this medication?

17

First of all, nothing is “just” anything. Symptoms are real. Saying something is “just” depression or “just” anxiety or whatever both belittles the symptoms and inaccurately represents the underlying problem. I’d much rather a patient’s symptoms be due to thyroid disease than depression, because I can treat thyroid disease a lot more effectively.

Second of all, your tests, in light of your symptoms, merited follow-up. If nothing else, your symptoms themselves deserved closer follow-up.

That said…

There is tremendous controversy behind the diagnosis of hypothyroidism, and where we should draw lines. The only things we can really agree on are that people with a TSH above 10 ought to be treated, and that those with a TSH of less than 2.5 probably shouldn’t be. 2.5-10 is a “gray zone”. Organizations can publish “guidelines” in an effort to make the point seem less controversial than it is, but I have yet to see any good data saying that people between 2.5 and 10 benefit from treatment.

But, you say, what’s the harm? Why not try treatment, and see if the patient feels better? That’s the philosophy behind the guidelines. and I agree, up to a point. The problem is false hope. People expect that when they “get their thyroid straightened out”, they are going to feel better, have more energy, lose weight, etc. They put tremendous stock in the diagnosis, and lay all the blame on the thyroid. Then what should they think when the Synthroid doesn’t fix everything? I’m sure that many improve due to the placebo effect, and that’s OK, except that I’ve just committed that person to a medication for a lifetime.

The bottom line is this–I cannot, from a scientific standpoint, tell you that treating your TSH of 4.2 and normal T4 is going to help your symptoms. I can’t tell you that it isn’t. Anybody who does tell you so is a liar. All anyone can offer is an opinion. Mine is that someone with a TSH of 4.2 and a normal T4 is not likely to benefit symptomatically from treatment, but that it’s possible.

Not to defend your doc; at the least, he could have explained all this to you.

BTW, the published normal value for TSH in our lab is 0.5-5.5, for what it’s worth.

18

Unfortunately, you’d have to walk from me, because I discuss it with every patient.

The best drug in the world won’t help if you can’t pay for it. You have no idea how many times I’ve given a patient a prescription, only to have them hand the same script back at the follow-up visit a week later because they couldn’t afford it.

There is often more than one way to reach a particular goal–one way may be easier, faster, or more certain, but far more expensive. I also have several avenues available to me for helping people get meds they can’t afford, but I need to know about it to set those things in motion.

“How do you pay for your medicines?” is a standard part of my new-patient interview, and my life (and the patients’ lives) are much easier for it.

19

You know, that might be worth looking into … except I don’t eat white bread. Only 100% whole wheat (which can be tricky to find sometimes…)

I actually DO know what I’m allergic to - problem is, some of it’s so damn common it’s hard to avoid. I inevitably break out in a rash the week the corn (maize) pollinates… how do I avoid corn when living in Indiana? Mostly, I just try to spend that week indoors…

20

Dr. J: I am glad that you ask your patients how they pay for their medications! Our insurance deductible is $2,500 each annually so all medications/office visits are paid out of pocket until we reach that amount.

We have wonderful docs who will often offer samples, starter packs, and write our long term meds scripts for multiple months at a time (and consider whether the med can be split, etc). Their concern for our finances, as well as our physical and mental health is very appreciated.