Different Patient Same Story

Cushing's with Moxie made this video and posted it on their blog.

You'll laugh if you have an endocrine issue and have run into the medical mentality of 'all patients need are some anti-depressants.'

I've actually had versions of the conversation in this video with various endocrinologists. Which is probably why I was giggling all the way through.

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A Note on Decorum

Hi. Just an FYI, I'm not an asshole. No really.

I'm not your punching bag either.

Unless I have directly insulted you personally, there is no reason for that kind of ire.

None.

I don't deserve it.

It's not okay.

Further, you are proving my point.

I thought this blog might be of some service for both patients and the medical community.

I admit, the name has been an unfortunate albatross. From blog platforms that won't let me post comments as their filters consider 'pissed' to be a swear word (I don't think of it that way, to me it is just a synonym for angry) to bloggers not being sure of how 'safe' I am because who goes around labeling themselves as a 'pissed off patient'?

Well, I do and I'm not a troll deserving of a smack down either. Despite what you think the name might imply.

The patients get it, but the online medical community has been largely silent, occasionally confrontational, and rarely supportive.

Again, proving my point.

Take note, I don't bite, unless you do.

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Shock & Awe

So the toddler's PT and I are pretty chatty. Actually, I wouldn't mind staying in touch with them beyond therapy, but we'll see.

Anyway their kid was in the ER for a decently serious allergic reaction to an OTC that no one is ever supposed to be allergic to. So they ended up on steroids, a five day burst.

The ER doc took the time to explain how the steroids would impact the kid's appetite and weight.

At that point, my jaw hit the floor and I lost consciousness from the shock.

Wow.

Basically I'm pre-diabetic, overweight and having all sorts of medical fun because not one physician ever attempted to educate me on the impact of steroids.

I was never even given the chance to take personal responsibility for my health because medicine didn't do their part. Over and over and over again.

Of course, I did get shaming lectures on my weight from the ped who was prescribing the bulk of the steroids between the ages of 15-18. Medicine totally wins at hating fat people.

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Three Quick Hits

1. The toddler fell down the stairs and had a leg collapse while standing after the EI assessment. I should have known it was coming as muscle fatigue is a trigger, however, I flaked and forgot to watch her on the steps. Thankfully it was not a serious fall. I am annoyed that this 360 view is absent from the EI assessment.

(Also, I'm laughing remembering how they said any OT would be 'short term' which I don't think they realize it took a year to see some progress in PT--some as in we have more work to do because there are still deficits. I have the feeling they think if they just let her run with scissors she'll be fine, their naivete makes me giggle.)

She also had a big tantrum at her PT session and ended up throwing her shoes at the PT (who is the sweetest most lovely person). She was hot. She was tired. Her feet hurt from all the PT and she couldn't articulate it.

She felt terrible about it and sobbed all the way home. We are working on a way to make amends with the PT (who completely understands, but I don't want the lesson to pass the toddler by, you fix what you break).

2. I have stopped taking steroids. It could've gone either way and, in fact, when I listed the pros and cons, the up dose column kind of won. However, updosing wasn't much help last week so I stopped taking steroids instead.

While it's too early to claim victory, I think it's going to be okay. (Don't worry, I will still whine for weeks about withdrawal/insufficiency symptoms.)

I have an endo appt coming up and plan to do an am cortisol draw the same day just to be safe. I think we now begin to move into the next phase of this mess...

-Re-enter standing orders for more cortisol tests on the off chance I tank again. The fact continues to be, I had weaned and exercise brought me low. It's not enough to be off steroids, I need to be off them and exercising and working and parenting with impunity. The goal is a life, anything less is a failure.

-Writing a note to the pulmonologist who believes none of this is adrenal with an 'is to' message and instructions on how to taper steroids in the future.

-What other protections can be invoked? If I can't put some protections in place, there is nothing to stop this from happening again. It needs to not happen again. Really there's no excuse. If it's not a known, documented problem by now, there's no hope for medicine and only despair for patients.

3.My PCP still has not called me back re: the gut. Bwahahahaha. Isn't it amazing how this stuff happens and happens and happens? I'll give it another day before I bug them.

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Prednisone Does Not Make People High (Remix)

Over on Queen of Optimism, I read she's been told by ER docs the prednisone she uses to preserve her ability to walk can cause euphoria, which is maybe her problem.

Excuse me.

I need to go beat my head against a wall.

It's more rewarding than dealing with doctors.

Clearly this idea that steroids = mania/euphoria is pervasive in medical training.

My own pulmonologist tried to tell me the reason I kept taking steroids was for the energy boost.

Key point the doc didn't bother to ever investigate? My am cortisol was a 6 and that was with steroids in my bloodstream. Without the external prop up from prednisone it was less than a 6.

Low cortisol = bad.

When prednisone restores the ability to move your body half way decently, you are at such a deficit physiologically that it would be hard for prednisone to make you manic.

In those situations prednisone = normal functionality. Not euophoric mania. Okay?

It is not that damn hard.

Please get a f*cking clue before someone really gets hurt.

Absolutely unacceptable.

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Exercise for the Weak

First, a clarification on the previous post. The ER did not give me antibiotics, which is why I went to the RE who didn't have the right antibiotics on hand, and what they did give me added heart attack symptoms to the hallucinations of death and 'dissolvement' which is how I ended up at Dr. Vicodin's. So three days and three doctor's visits just to get the right stinking antibiotic for a 1% complication of infertility treatments.

Oh, and I missed a week of work due to illness. Those pelvic infections do not mess around.

I went back and edited the post trying to make the sequence of events a little clearer to future readers. I am not sure I did such a good job of it, but I tried.

On to today's post.

Exercise is interesting. I enjoy working out, but I have to say, the fact that exercise fatigues me to the point of napping is not so enjoyable.

People tell me I look tired. I think I look tired too. Puffy and pale.

And my brain gets 'eated' by the fatigue.

Today, on the drive home from the rec center (where the toddler swam while I did a slow zombie shuffle of 1.5 miles due to be tapped out from the previous day's workout) I thought we had gone South and West to get home instead of North and East.

Didn't recognize the stores or streets around me at all. Completely convinced we were going some other direction on some other street.

Even started talking about the route with hubby who oriented me as to the reality of road and direction.

Sigh.

I feel better now. After a nap.

The other interesting thing is now I crave salt. Really crave it. Eating lots of olives.

Seems like my body has no sense of direction either.

Maybe if I scale back to 2 metabolic resistance workouts a week and low impact 'steady state' cardio in between that will mitigate things? Because I've been trying to go full bore on alternate days, interval cardio training, half an hour of squats and jumps etc... I can handle it in terms of fitness, but the energy reserves/production just aren't there.

One of the NPs in my family gently suggested maybe this wasn't the time to be trying to lose weight and exercise. Hah. If I wait for the right time, I would do nothing.

In a month, when I taper again, there will be no exercise, it will be impossible for I don't know how long. However, I hope there will be new weight loss to maintain and then, when I feel better, I will drag myself through those painful beginner workouts yet again.

Pain and pain and pain. That's what it's like to exercise with illness.

This is as good as it gets. The challenge is to figure out how to make do with less than the best.

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The Dr. Vicodin Story

Right after the bullying Jesus Freak doctor, I landed at the office of Dr. Vicodin. They seemed competent enough. Zeroing in on a PCOS diagnosis on our first meeting and dashing off a referral to a Reproductive Endocrinologist (RE) without batting an eye (or cracking open a bible or drawing a picture for me of Jesus on the cross).

Quite refreshing.

And then things got weird.

The set up goes like this....

My first (and last) IUI cycle resulted in a pelvic infection. (IUI = turkey baster method of getting pregnant). This happens about 1% of the time (and once again I won the wrong kind of lottery!).

The pelvic infection drove me to the ER first. The pain was such that I promised God if She just let me out of the bathroom I would go to the ER. Also, it was Sunday which limited my medical care options.

The ER missed the infection. My fever was 101 but copious amounts of Advil masked it quite well and I guess my blood work was fine.

Well, the ER doc was quite sympathetic and asked me what I wanted for pain at home.

I requested prescription ibuprofen.

But they pressured me to take a prescription for Vicodin as they didn't think Ibuprofen would be enough for the pain.

I told them I didn't want Vicodin. I'd had it once before due to a root canal and thought it was useless.

So they offered me a compromise of a Vicodin/Advil combo pill for the pain.

Since I was doped up to the point of being unable to walk, I thought that was a swell idea.

What wasn't so swell was waking up in the middle of the night believing:

1. I was dead.

2. The left side of my body had dissolved.

3. There were tentacles bursting out of my stomach.

4.I was glowing in the dark.

5.I was having a heart attack, complete with pain radiating down my arm.

After a useless visit with the RE the next day, who didn't have the right antibiotic injection on hand to treat the complication of their care (seriously? and they wonder why I never went back!), I ended up at Dr. Vicodin's office due to the heart attack symptoms the antibiotics the RE prescribed caused.

They hooked me up with an antibiotic shot in the ass and a prescription for different antibiotics as the one I'd been given was the source of the heart attack symptoms. When I asked them how I should dispose of the Vicodin, they quietly palmed my bottle of narcotics, tucked it in their pocket and said they would give it to patients who couldn't afford their medications.

Then they told me some disjointed story about a 13 year-old patient who was pregnant and just acted weird in general. Too much information about other people, you know?

The whole thing seemed off to me at the time, but I didn't know what, if anything, I should've done about it.

The next time I tried to make an appointment, I was informed the doctor had moved out of state. My one doctor friend tells me this happens sometimes with docs who behave badly as a way to keep their license??? I assume Dr. Vicodin had a bit of narcotic issue as my doc friend also told me what they did was very much not kosher.

And that's the story of the doctor who took my Vicodin and ran.

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Lost: Patient Power, Reward if Found

There is a conversation on Brain Fog about doctors and patients that I've been participating in over the last few days.

I declared in one of my comments that the doctors have all the power, the patients don't have any.

A declaration that one of the doctors commenting felt was wrong.

Well, let's review, shall we?

Yes we shall. Oh, yes we shall.

When the A$$hole Allergist declared I didn't have asthma and maybe I had a heart problem or chronic embolism issue but didn't arrange for any diagnostic testing...

I complained.

About the lack of follow up.

About the poor testing protocols.

About the abusive behavior on the part of the physician.

Go patient power. Want to know what my 'power' did for me?

Nothing.

I still couldn't get a doctor in that system to prescribe asthma medication and spent the year using leftovers from the previous year, skipping doses to conserve what was left.

And there was still no follow up on the idea of heart or embolism problems.

The HMO did assign a new doctor to me, but it was months later which was kind of useless.

Not only was the A$$hole Allergist's bad behavior not addressed, the HMO wrote me a response and said "they didn't mean what they said." Awesome. I didn't know there were take backs in medicine. Not like that.

Am I alone in thinking that patient power is slow?

When I looked up the State Medical Board's guidelines for filing formal complaints, I found what the A$$hole Allergist did to me wasn't bad enough for a complaint.

Note: I have never ever complained about a doctor before, the A$$hole Allergist was my first. Also? I plan on complaining as much as possible, not under the illusion that it will help me, time moves too slow in medicine for that, but it might help the people after me.

When I was hospitalized with asthma the following year (now with health insurance that allowed me to see a pulmonologist who believed* I had asthma) and asked for cortisol testing because I was having problems similar to what had happened to me in the past where my am cortisol was 1.3 (I keep saying 1.9, but it was actually 1.3).

I was told no.

That it wasn't adrenal.

Yet here I am, Miss Adrenal for 1994, 1995,1998, 1999, 2000, 2010 and 2011.

Yet doctors still deny there's an adrenal problem. Including the endo who ran the blood work that yielded an am Cortisol of 6 and that was with steroids in my bloodstream (And yes I'm going to repeat that over and over until every single doctor in the universe reads it and gets a clue).

Further in the midst of this, some idiot tried, again, to tell me I didn't have asthma. Somehow they missed the part where I was in the hospital just a few weeks prior with pulse ox readings as low as 90. Not that they looked at the medical records in their computer system documenting this. No, why do that when the information would run counter to their beliefs*? They wanted me to go to therapy because they subscribed to the mind-body connection, one in which everything stems from mental illness.

Seriously, I can't make this sh*t up.

So I doctor hopped a bit which really doesn't do much other than highlight the flaws of medicine, so glaring the physicians are blind. Any positive medical outcome to date has been more a happy accident than a physician recognizing the adrenal glands are driving my problems (with the exception of the one endo who 'got it' but didn't run the testing so all the other docs persist with the idea it's not my adrenals because I don't have a test proving it so).

I am sometimes encouraged by others to go see even more doctors under the misguided belief that not all doctors could be so ignorant. I refuse, because yes, they can all be that ignorant so what's the point? The reality is, all I need are steroids and occasional blood work, if I can manage to weasel that out of the medical system, I can take care of myself regardless of what diagnosis is or isn't assigned to me.

However, I have a feeling that this is not what 'they' mean when 'they' talk about patient power.

But it's all I got.

I can complain but it doesn't result in anyone prescribing the medications and tests I need. Nor does it correlate with an improvement in physician quality or performance.

I can ask for another doctor or make the appointment myself (if the insurance allows) but a)it eats up enormous amounts of time, time in which things can go wrong and b) there's no guarantee the next doc will be any better. Better the devil you know than the one you don't.

Further, with asthma, there is a certain amount of incapacitation during acute phases where I can't defend myself because I can't talk or reason well.

So where is my power and how do I use it? Please tell me.

Oh and here are some more examples of my Patient Power in action for your reading pleasure: the bullying Jesus Doctor nutjob and the pulmonologist who screamed at me. There's also the primary care physician who took my vicodin and ran, but I haven't had a chance to write that story up yet.

Oh yeah, I sure do have all sorts of patient power.

If you define that as being constantly ignored and having a talent for finding the weirdos in medicine.

In which case, I am a mega watt super star, baby.


*I use believed and beliefs quite deliberately here as it is what the doctor believes more so than any objective evidence that confers diagnosis and determines treatment.

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Quality in Medicine, the Lack Thereof

What strikes me as I continue to navigate the mess we call medical care is how poor performance festers unchecked. If I screwed up as often as medicine does and in the passive-aggressive manner it specializes in, I would have been fired from my last job.

Yet the doctors I've seen continue on their merry way.

Where is the quality control? Where is the accountability?

For instance, let's look at my diagnosis of Hashimoto's.

The first endo gave me the diagnosis simply based on palpating my thyroid and in light of family history.

The second supported the diagnosis before the blood work came back, but at least they ordered blood work. They never called me to follow up on the results or anything, which makes the blood work sort of useless, but okay. (What is the point of ordering blood work if you're not going to interpret it and DO something with it? The doctor is just wasting the patient's money.)

The third endo questioned the diagnosis and ran more blood work for even more antibodies because they weren't impressed with the previous bloodwork and said I don't have Hashimoto's.

Here's a revolutionary idea, why not run all the blood work upfront? I mean ALL of it and then decide if it's Hashimoto's or not. Take the cost of the doctor visits vs. the blood work and factor in the opportunity cost of one patient using resources across three physicians and tell me what is more efficient, accurate and economically feasible?

Hashimoto's is relatively simple stuff medically. It's common. There's a diagnostic test. So why does it take three endos to sort it out?*

It's half-a$$ed. If I had handled my job in the same manner, first, I would've blown something up with my incompetence, second, I would've been fired as well as faced civil charges and fines from the government.

Further, I was living with the supposition that I had Hashimoto's and avoiding quite a few vegetables as a result. Imagine if it hadn't been Hashimoto's but something that required more drastic lifestyle changes? All based on a bad diagnosis.

Why is this acceptable? Why is there no feedback mechanism in place to take situations like this and use them to improve the practice of medicine?

*I guess this explains why getting decent care for adrenal stuff is so difficult. If they can't handle a simple thyroid...

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More of the Same

I heard back from the endo on the ACTH challenge. Apparently I'm fiiiiiine.

Huh.

Let's hope it's the case that the HC wearing off and leaving me hanging (painfully so) for half the day is finally prompting my brain to do its job.

I've sent a request for my medical records so I can verify the actual test results. I managed to finagle the numbers out of a nurse, but can't rule out the possibility that they gave me wrong info.

If what the nurse told me is right, well yeah I am making some cortisol*, but the values didn't double and weren't high enough in total to rule out Secondary Adrenal Insufficiency.

Also, if the nurse is right, the endo maybe misread my results. So, yeah, I need my medical records.

Best case scenario, this test shows some recovery going on.

But I bet I will need another challenge for comparison to know that for sure.

I also bet the endo will not be happy that I want another test.

I am so tired of doctors. Over it.

The endo did not give me a taper schedule and actually gave no instructions at all. So I am over here playing around with things. Again. I'm experimenting with my dose because...

The muscle cramps are awful. They have been awful. All those times I mentioned that they were improving? Were when I had high levels of hydrocortisone in my system which minimized the cramps. Come 3 or 4pm, I feel like I'm being squeezed by a python.

It is incredibly painful and debilitating. It lasts for about 5 hours and then slowly improves (possibly a sign that my brain is realizing it needs to do something????).

The endo thinks I should see a rheumatologist (sp?) and is not connecting the pain to the steroids wearing off. Nor do they care. They are suffering from 'all your results are normal by my standards so you are fine and should go away now' syndrome.

Have I mentioned that I am SO Over It?

The endo also doesn't want me to split dose because then I will have too much HC in my system and not enough time with it out of my system.

While I respect and understand that position, it is not going to work for me. So I've been experimenting, trying to push back the muscle pain until 8pm or so. Most adrenal insufficiency patients do a morning and mid to late afternoon split dose. I don't need to do such a late second dose, I can do it around noon, which means I still have time with no HC in my system.

Unfortunately, that means the pain and muscle spasms hit right when I want to sleep. That's not going to work either.

Today I'm trying to delay the steroids as long as I can in an effort to push back the cramps. We'll see how that goes. As it stands right now, my brain is kind of not working well. If this post makes zero sense, that's why. Not enough steroids.

And I need to call the endo and point out that they really never gave me a game plan.


*See also how estrogen birth control pills and PCOS estrogen dominance can inflate cortisol. Which is a good thing for me I think. Some AI patients report baseline cortisol levels as high as 16 while on the pill. I was not that high, but it was respectable (I'm holding off on sharing values until I can confirm them).

By the way did you know that progesterone is a precursor of cortisol and that I don't really make any? Interesting, no? This is all so much more complex than one blood test.

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And Another Thing...Prednisone is Not a Happy Pill

My pulmonologist seems oddly attached to this idea that prednisone creates a false sense of well being, making you feel better than you actually are. That it's a mask covering all the yuck.

I beg to differ.

Yes, I've been hyper, manic even, on high doses of prednisone but I have not ever felt great. Weird. Out of my mind. A little crazy. Cranky. Edgy. Insomnia. Yes I do get that.

But super hero high to where I can power through anything? Nope. What I do get is relief. I get my regular energy back and I go live my life.

So to be told today that I only improved on prednisone because of its false sense of well being is frustrating. Their belief in this idea of prednisone as super charger is so strong I do not feel the pulmo really heard me. They were too busy listening to themselves.

You know that intense mid back pain radiating around the side and through my stomach along with shortness of breath and fatigue and headache that improves with prednisone?

Totally not adrenal. Couldn't possibly be.

I just had regular old back pain and got better because Prednisone will do that for ya. It's a super drug, you know, it just amps you up. That's all. I don't have anything wrong with me at all.

Riiiiiiight.

I am also a super model on the side and Taylor Swift writes break-up songs about me.

I would love to know on what planet someone with a documented history of SAI who takes high dose steroids for a month and then has problems upon weaning would be anything other than SAI?

Because that? Is the planet I want to live on.

Yeah, there are some differential diagnoses that could be worked through. I could maybe see sarcoidosis (sp?) on the table (a friend of mine had a brush with it which is how I know anything about it). Or something else. There's the lung tumor after all, but it is small, the odds are it won't have grown or it will have actually disappeared (I'm hoping for disappeared myself).

But you never know. I'm all for a thorough investigation.

The problem is I do not have a doctor who wants to do one. Or if they are doing one, they haven't told me about it.

The endo appointment is 12/10 and the CT scan will be shortly after. I really really hope I get some decent forward movement here. I'm due for a good turn.

As for prednisone, I am on 15mg and feeling better. No pain. Still kind of wiped out though and headache-y. My thought is I may have under-dosed,but, at the same time, I'm glad I didn't take more than 20mg. I don't want to make this mess any worse than it has to be.

The doctors are doing a fine job of f*cking it up all by themselves.

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Apparently It's Hate On Doctors Month

Two articles in major magazines this month taking medical science and doctors to task. Hard.

Discover Magazine's November issue has Reckless Medicine. The article is NOT online anywhere that I can find, so I typed up some of the better quotes to share with you.

Less than Half of Medical Decision Are Evidence Based

“A panel of experts convened in 2007 by the prestigious Institute of Medicine estimated that “well below half” of the procedures doctors perform and the decisions they make about surgeries, drugs, and tests have been adequately investigated and shown to be effective.”

Lack of Proper Research Kills More Than 2000 People a Day

“More than 770,000 American are injured or die each year from drug complications, including unexpected side effects, some of which might have been avoided if somebody had conducted the proper research.” Agency for Healthcare Research and Quality

Financial Conflicts of Interest Are Rampant Among Doctors Publishing Studies

“A 2002 study in JAMA found that 87% of guideline authors received industry funding and 59% were paid by the manufacturer of a drug affected by the guidelines they wrote.”

“A report published this year found that authors of medical journal article favorable to the controversial diabetes drug Avandia were three to six times as likely to have financial ties to the manufacturer as were the authors of articles that were neutral or unfavorable.”

Heart Stents Actually Kill Patients

Stenting is not as effective or as safe as medicine likes to claim. “One study, conducted in France and published in 2006 in the NEJM had to be stopped because stenting was killing patients. Another large study out this year found that 6.4% of those receiving stents had a stroke or died within 4 years.”

Lack of Critical Thinking in Medicine

“…In many cases, physicians perform surgeries, prescribe drugs, and give patients tests that are not backed by sound evidence because doctors are not trained to analyze scientific data says Michael Wilkes, vice dean of education at UC Davis.”

“Most medical students don’t learn how to think critically,” Wilkes says."

Note: I thought this was kind of harsh. I have seen some seriously scary inabilities to connect easy dots at times BUT doctors are not single celled mouthbreathers either.

Statins Don't Work

“50 men at risk for a heart attack would have to treated with statins for 5 years to prevent a single heart attack or stroke. 98 of 100 men treated for five years would receive no benefit from the drug, yet they would all be exposed to risk of its potentially serious and fatal side effects, such as muscle breakdown and kidney failure.”

Number to Help vs. Number to Harm

“Doctors would have to treat 40,000 patients with strep throat to prevent a single instance of acute rheumatic fever. However, 8 patients would suffer a near-fatal or fatal allergic reaction-the number to harm.”

Companies Manipulate Studies to Turn Them Into Drug Marketing Vehicles

“…concern turned to outrage when two employees of a communications company came forward with documents showing that they had been paid to ghostwrite some of the Tamiflu studies. They had been given explicit instruction to ensure a key message was embedded in the articles: Flu is a threat, and Tamiflu is the answer.”

“There was no proof that Tamiflu reduced serious flu complications like pneumonia or death.”

THEN, as if that wasn't enough, for the one-two punch, we have an article in The Atlantic which is online. Check out Lies Damned Lies and Medical Science.

Maybe some of us pain-in-the-tuckus patients aren't really the problem. Looks like we are right to question question question and research research research.

I look forward to the med blog analysis of these articles.

By the way, do try to read the entire Reckless Medicine article. It's about 6 pages long and full of information. What I posted here isn't even the half of it.

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What Is This Doctor's Problem? I Would Like to Know!

The notes from the toddler's last appointment with the specialist came in and all I can think is WTF? Is this guy on the same planet even?

In our second visit I addressed things the specialist left out of his report from the first visit--Mainly all the atypical stuff the toddler did right in front of him and the resident. You know, the entire reason we were referred to a specialist in the first place.

And this is a world class medical system. Famous even. So bizarre.

So the notes from the second visit arrived today and they don't match anything we actually agreed on or discussed during the appointment!

As in he told me a diagnosis (which I think is BS) and then didn't put it in his report. What is up with that?

The physical therapy (PT) we agreed upon, he wrote we would do only if the falling continued. Which is not what we discussed and decided at all,we agreed to do PT now.

In talking to the PT office today (her first session is tomorrow), the notes are actually confusing them because it says one thing and we are doing another.

I am irked and feeling that this is probably a sign we should find a new specialist if we continue to need one (I am hoping the PT is the magic bullet).

Is this just par for the course? I am completely new to all this.

My concern is, if the toddler has an ongoing, more serious pathology at play here that these notes are going to become an obstacle to appropriate medical care, you know? They aren't accurate at all.

Which is not cool. So WTF?

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