The Doctors & the Patient.

25 04 2010

Once there was a woman with secondary Addison’s disease. She took her replacement medicine (cortisol, thyrax, growth hormone, DHEAs) as she should and everything was reasonably under control.

However, gradually she began to feel weak. She often disliked food, sometimes to such an extent that she had an urge to vomit. After a month or so, she began to feel dizzy, especially when standing up. Then her heart suddenly banged very quickly against her chest. It felt frightening.

Her work wasn’t going well in this period. Feeling weak and not being able to sleep, she could not concentrate and often felt like she could just cry or lay  down on the floor, because she was so extremely, extremely tired.
But it was a busy and important period. She should write a research proposal, finish a paper, and present a poster at a congress. Furthermore her paper was chosen for a press conference, that was recorded live.

Nobody took her serious, no one thought that she might be ill. She did recognize some symptoms that could be manifestations of an Addison crisis (weakness, dislike of food). However there was no reason for a crisis: she took all her medicine and had no flu or fever, thus there was no need to raise the cortisol dose.

Before she went on vacation she just wanted to check with her endocrinologist, but the endo was on vacation too and according to the policy of the hospital she had to be referred by her GP. Her GP also had vacation, so she went to the locum. He reserved his lunch time for her, which was really nice.

Because this doctor wasn’t familiar with the disease, he looked it up in a book and decided to determine whether she had orthostatic hypotension (drop in pressure and dizziness when standing up), because this is typical for an Addison crisis (she learned then). She had to lay down and stand up several times. He failed to demonstrate orthostatic hypotension (but she felt it was taking him too long to measure the blood pressure after standing up; she didn’t say anything though).

Then this GP phoned the attending endocrinologist at the hospital. This was one of the endocrinologists who had been in charge of her during the years. Usually she got a new doctor each year.
From the conversation she could infer that this endocrinologist didn’t think there was really much wrong. Afterwards the GP urged her to take her medicine (as if she didn’t take enough) and to take more if necessary. He gave her a form for blood tests, but urged her only to do the tests when it was REALLY REALLY REALLY necessary…..

She felt bad, like a show-off. She excused herself, she was sorry to have bothered him. She never did the blood test, but took some extra cortisol though.

She went on holidays (why would she stay home?), but from there it only went worse. She couldn’t sleep at all. She had gradually lost up to 8-10 kilos in 2-3 months time (about 15% of her body weight). She was dizzy and nauseous and regularly had migraine .

Back home she went to her own GP. He didn’t examine her, but sighed: “This diseases is too complicated. I think you better see your endocrinologist….”

So she phoned her (own) endocrinologist and she was invited to come after the regular consultations. The doctor did a physical exam and noticed orthostatic hypotension. Blood tests were done, which revealed a low blood sodium (125), not as dramatically low as during her first crisis (106), but still abnormal (<140). The next days the sodium dropped further and the creatinine got outside the normal range, so the endo proposed to hospitalize her, saying: “this is not an emergency, but i don’t trust it, because this is not like you. It is not like you at all. I don’t want to wait for the weekend.”

Her endocrinologist had to convince the internist to make a bed available for admission.

During the intake, the two internists behaved very skeptical. Even though the lab results pointed at a too low cortisol level (later confirmed by the lab). One of them kept repeating that a cup of salty soup would pick her up (lack of salt mainly plays a role in patients with primary Addison’s disease, who also lack aldosterone). He would even say that after she recovered by her cortisol infusion. The recovery was very quick. The other internists said that it was a miraculous metamorphosis.

Well that female patient? That was me, six years ago.

And all doctors were males except the doctor who finally hospitalized me.

Yes of all doctors I had seen as an Addison patient over the years, she was the only woman. Many of the male practitioners were excellent doctors, but none of them would have hospitalized me because his intuition told him “something was not o.k.” Maybe I’m wrong and it is just by chance that this happened to be a female doctor. But somehow I feel that, on average (!) female doctors listen a little bit more to their heart, and male doctors a little bit more to their brains.
It is only intuition, but then I’m a woman. 😉
My doctor was not interested in a career as the other doctors, she didn’t like the competition, she didn’t like the hierarchy and she didn’t care for a publication in top journals. Her patients came first.
She has now moved to another (non-academic) hospital and I have a new doctor again. A man, indeed.


This post is submitted to the upcoming Grand Rounds at Chronic Babe, with the theme Babes:
Your post might be about what it’s like to have women patients. Or to be a woman patient, or a woman who’s a health care provider. It could be about trends in health care for women, or how awesome women are, or how annoying they are. It could be about a particular patient who was very ladylike, or someone who totally wasn’t. It’s your choice. Whatever you send, just please make sure it’s related to the Babes in some way, or else I won’t be including you. This is Grand Rounds, ChronicBabe-style, so it’s Ladies Choice!



12 responses

25 04 2010
Pissed Off Patient

This is so very similar to what I’m going through right now. I don’t think the prednisone taper is going well for me.

I’m SO sorry this happened to you.

I really don’t understand endocrinology. The field seems to hurt more than it helps.


25 04 2010

Hi M,

I read on your blog that this period is really bad for you. I’m sorry to hear that. Is it the tapering or the bad control of our asthma or both?

It is a delicate balance. Too much cortisol is bad, too little is acutely dangerous.

It was not my intention to blame the endocrinologists nor the GP’s although the latter was much too reluctant. In a way I can understand the doctors because a mild and slow onset crisis is so hard to diagnose. But I think one should rather play the safe side and test for sodium (is not that expensive) than to risk a serious crisis or worse.
[since this happened I have a signed form at home; hope my new endo knows this btw ;)]

In general I’m happy that there are endocrinologists and that there is hydrocortisone. Without replacement therapy we would simply die. (hmm, that sounds dramatic)

26 04 2010
Pissed Off Patient

I think the taper is not going well and I think I had a ‘crisis’ last week as my body hit the wall of ‘what, you mean you aren’t going to give me prednisone today?’ That urge to just lay down –I can so relate to that.

Unfortunately, the bleeding was very distracting for everyone. Plus, now it looks like I’m anemic which confuses things as it can be a cause of weakness.

I’m just a hot mess. What can I say?

I’m beginning to have some serious doubts about the field of endocrinology. I see a lot of unhappy patients and many many thyroid patients end up working with a pcp and avoid endos completely. Patient advocates say it takes patients 5 doctor appointments to find a doctor who will properly treat their thyroid. Is it really that hard?

I’m glad you have someone who listens to you though.

27 04 2010

It is possible (but I’m not a doctor) that you can’t taper right now. Cortisol-dependence is physiological (not psychological, as you referred to on your blog -bc others said so). Perhaps your body is too dependent on cortisol right now and your HPA-axis might just be too distorted (so you might experience serious drawbacks). Tapering should be done very carefully.

Funny, I’m so concentrated on this cortisol-lack that I don’t worry at all about my thyroid. The problem with thyroid hormone and every other hormone is that the balance is so delicate. Doctors can just look if it’s normal not optimal. Substitution will never be equal to the normal situation. I don’t blame doctors for that.

Of course there are rude, incompetent and asocial doctors out there. I hear other patients complaining about it too.

But these need not be specialized in endocrinology. Many patients seem to have got iatrogenic cushing or addison by wrong treatment by their pulmonologist, dermatologist, internist who didn’t know high doses of dexa could really ruin the HPA-axis.

I know so many endocrinologists who really spend a lot of time helping patients by informing them on new treatment or new findings. From them I learned a lot that helped to improve my daily life.

Whether your own doctor is “good” also depends on whether he/she has ears for you. That was the case with my (female) endocrinologist, who unfortunately left the place. The above post was meant more as an ode to this doctor then as a complaint about the others.

It is similar to the doctor you described on your blog (coincidence or not: a woman):

She was invested in me, which was super amazing. She heard me. She got me. She was detailed, she believed my history–I had credibility. We were on the same page.

25 04 2010
Grace RN NJ

Wow-this is scary familiar. That was me, last year pre-diagnosis and treatment, AND post diagnosis/treatment. You had very classic symptoms of inadequate steroid replacement.

As a nurse my thinking used to be: how could ‘I get sick’? I have to take care of…just fill in the blanks. I was at the bottom of that particular list.

My second endo group (have been to a total of four so far) included a female nurse practioner. I thought it would be great-but she was lousy!! I didn’t have any energy despite the steroids so she gave me a bag full of drug samples-an amphetamine-type drug NOT indicated for Addison’s disease-off label use. When I told her I was not comfortable taking the drug she told me just to do what she ordered. Last time I saw her!! If the patient doesn’t get pushy to the point of nasty to advocate for themselves and proper treatment,-for any disease process but especially for a rare disease-then they face an uncertain future. We have to follow our own ‘gut instincts’.

The endo at the MassGen Neurodendocrine Study Center is male and was fabulous, so I have no bias as to provider. I’d take a six-eyed green Martian if the care was good.

May I ask-how did you feel after starting the growth factor? Did you need adjustments to the steroid and thyroid?

26 04 2010

Thanks for your comment, Grace. I might be biased, but I have a fabulous female nurse practitioner as well ;). I have her for 10-11 years now and see her at least once a year (that used to be twice a year).
Your story about the amphetamine is really too ridiculous for words. Indeed we have to be advocates for ourselves, but it is easier for us (health care workers) than it is for most other people. And certainly when it comes to diagnosis.

It is difficult to say if growth hormone made a change. My Addison (Sheehan) was immediate in onset, and after final diagnosis treated with cortisol and thyrax.
After a few months I got my growth hormone (GH) injections, but that was at a time that I still felt miserable. I didn’t have to change my thyroid/HC because of GH, but I think the estrogen dose might have been adapted.

Later I lowered my HC dose from 2×15 to 10-5-5 to 5-5-5 to 5-5-2,5 (that was independent of the growth hormone). I felt much better after this reduction.

Still later I asked for DHEA, which I got.

I stopped using growth hormone on a regular basis, since I ‘m not sure of the effect and since I know from research that growth hormone is often invoked in pathologic processes. On the other hand these are only physiological doses (given in a not-physiological way) and there is a positive effect on the fat- metabolism. Since this has obviously changed since I got Sheehan (i had such a thin waist), I think I should give it another try.

Although as a patient we now our bodies the best, we can’t look inside or see the effects in the long term. Especially when the effects are subtle, as in case of growth hormone.

26 04 2010

Came here from a twitter mention of this blog entry. I thought I was the only woman who felt that female doctors “listen” listen to me better than male, who tend to go by symptoms alone, and ignore what I call my gut feeling, which is not only figurative, but apt in my case, because I am talking here of IBS.

Good to know I have company.

27 04 2010

Thanks for dropping by, lakshmi. Nice to “meet” too.

“Gut feeling”. I must remember that.

Thinking of it the difference with the other doctors it was not only that she listened to me and didn’t go by symptoms alone, but she was also the only doctor who treated me long enough to know who I was. Patient case histories lack any personal detail. She knew that I was compliant, that I knew a lot about the disease, that I was normally rather fit and lively, and that I never complained a lot. But then I was apathetic, inattentive and had lost a lot of weight. So it is also a plea for continuity of care by the same doctor(s).

27 04 2010

I am secondary Addison’s and have had a few Doctors who knew nothing about the condition. I was in the ER and the on call endo came to see me. This endo told me he was sure I didn’t have Addison’s because my potassium was low….if I could have I would have got up and walked out. Another endo accussed me of not taking my Cortef on purpose so I would have to go to the hospital. He insisted that I if I was “properly replaced” with steroids, I would never have any problems. I now go to a woman doctor, I am her only Addison’s patient and she is great. Coincidence that she is a woman? Maybe.

Happy to find your blog, there is not much talk about Addison’s out there.

I take 22.5 HC in two doses, and 12.5 mg DHEA, I still feel like shit everyday.

16 05 2010
Jim Purdy

Why don’t doctors listen to patients? Is it because of their medical school training? Are MDs trained to have closed minds, while PhDs are trained to have open minds?

24 05 2010
E-Patients & I-Patients? « Laika's MedLibLog

[…] The Doctors & the Patient […]

23 08 2010
Stories [8] How Not to Reassure (or Treat) a Patient « Laika's MedLibLog

[…] My gp had the same attitude another time.  I had signs of a Addison crisis. I tried to explain to him what might be wrong. He asked one or two things, shrugged and then said: “You better make an appointment with your specialists. This disease is beyond my practice.” At the time it seemed ok to me, but my endocrinologist said it was irresponsible: “Suppose he wouldn’t immediately refer someone with an acute crisis: that could be fatal. [I was hospitalized in this case, but it was not that urgent] See also “the Doctor and the Patient” […]

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