Living with complex invisible illness and my endocrinologist – April 2021

My endocrinologist is the rudest person I have ever known.  Ok, that maybe be overstating it, but she’s certainly the rudest doctor.  She’s sarcastic, aggressive, egotistical (“I will not treat a patient who is also seeing another endocrinologist. This is a complete waste of my time”).  Well hun, I’ve been seeing you for three years and you’ve done absolutely NOTHING for me either.

She has tried to get rid of me many times, but she was the only endocrinologist available to me.  A few months ago I asked to be refereed to another endocrinologist because she was so rude and abrasive. And disinterested, which made her incompetent in my eyes. 

I cancelled my appointments with her.  Then, when my liver function went through the roof, she got those results and she called me. I was very surprised, she sounded concerned.  She mentioned that she was going to refer me to the genetics clinic to investigate my rare bone disease. 

She’s been saying that for over a year, but she never DOES it. She forgets, I guess. She’s that disinterested.

I was glad to hear it.  When I saw my immunologist two weeks ago, he said he was going to talk to her about my bone density, and decide in consultation with her whether I should have further scans and maybe organise both a bone marrow biopsy and a bone biopsy.

My endocrinonologist wanted a bone biopsy and was furious when I had my multilevel spinal fusion that she hadn’t been told, and she would have liked a bit of bone to biopsy.  She yelled at me, told me it was very stupid not to have told her (just short of calling ME stupid) and she said she was “sick and tired of dealing with my mess.”

That had been the final straw and I didn’t want anything further to do with her.

But I still have a bone disease. And when she rang me and seemed interested, and my immunologist said he would confer with her. I kept my appointment this morning.

I was dreading though.  She always makes me anxious because she’s a surly, nasty little woman. 

She opened by asking me how I was doing. I gave a brief history on the last few months after my liver ezymes were too high, and told her I was back on a JAK inhibitor. She shook her head.

“What was the point of seeing Prof H (one of the best hepatologists in the country) if you’re just going to ignore his advice?”.  Accusatory. Rude. “You just completely wasted his time!”.  Unnecessarily rude.  This is not starting well.

I explained that I had two doctors giving me different advice, which happens more than she might iagine and it’s a very difficult situation FOR ME. But given that I have no other rheumatoid arthritis medication options aside from prednisone, my rheumatologist felt I have no choice but to try the last JAK inhibitor. I told my endocrinologist that I wasn’t completely comfortable with the decision, but I had no choice.

She snorted.  I almost got up and walked out.  Openly hostile doctors I can do without.  Why don’t you just talk about me behind my back after I’ve gone? I’d much prefer it.

I tried to change the subject, and told her I knew I’d messed up my morning cortisol lab tests, I accidentally took my corticosteroids before the test, which I should not have done.

She said “Yes, I can see that!  Did you not remember?”

Well, obviously. I have been mentioning the trouble I’ve been having with memory, and organisation, for many months.  Things just slip out of my head. I’ve told many doctors but they ignore me. 

I ignored her question and said “No, I forgot that morning.” In a pleasant, friendly tone.  All you can do with an aggressive, abrasive person is be super polite back.  I had questions I wanted answered.

She asked me about my thyroid medication and I told her, it wasn’t what she’d prescribed and she asked who’d changed it.

I told her Prof E, also and endocrinologist.  I added quickly that I was seeing him about my weight gain.

She flew off the handle shaking her head and saying she refuses to see me if I’m also seeing another endocrinologist. I repeated I was seeing him for weight loss, which is his area of interest. I wanted to yell back that I’d been telling her for three years about my weight gain, but she’d ignored me.  But I remained calm and super polite.

She moved on to my sex hormones and told me I was menopausal and asked about my periods. I reminded her I’d had a total hysterectomy (she cut me off before I could say “and both ovaries removed as well).  She grumped and said I could consider my ovarian function declining. I shouldn’t have but I then reminded that I have NO ovaries, and the fact that I did not go into menopause was very unusual. She rolled her eyes, annoyed that she’d forgotten this. I was also annoyed, but I kept my plastic smile on my face.

Next, cholesterol. Too high!  Was I on medication? I said “No, do I need medication?”. She said yes of course.  Did she prescribe it? No.  Go follow up with your GP.  Okay. 

Next, vitamin D, borderline low. Start taking it. I’m already taking 2000mg per day. Take 3000mg per day.  “You need it for your bone density because all the steroids you’re on will be destroying your bones.”

I reminded her that I have extremely HIGH bone density, and she was going to send me to a geneticist for that.  Before she could interject angrily again  (because she’d forgotten another major element of my medical history) I asked her if Prof I (my immunologist) had talked to her.  She said No.

Sigh.

The only reason I was here was become my immunologist told me that he would consult with her and they would come up with a diagnostic plan.  Either he didn’t do that, or he’d tried and she’d refused to discuss me.  I know which I think is more likely. 

“How much steroid are you on?” she snapped.

I told her.  She sighed and shook her head.  “ Why that much?  you shouldn’t be on hydrocortisone AND prednisone!”

I explained, again, how bad my rheumatoid arthritis had flared up while off medication. Prednisone was essential. I’d only just started Rinvoq and I will be off prednisone in two weeks.

Glare. 

She told me to reduce my hydrocortisone, as she always does. I told her, again, that I cannot reduce my hydrocortisone.  That I can’t function on anything lower than 32mg daily.

She snorted.  And repeated “nevertheless, you have to otherwise you’ll be destroying your bones.”

I said nevertheless I’d tried to reduce my hydrocortisone several times and each time ended the same way – me very sick and dehydrated and sometimes a trip to the ER for IV steroids and hydration.  It was THE problem I wanted to fix and just telling me to reduce my hydrocortisone endlessly isn’t helping.

She ignored me and moved on down her list.   on

She took my blood pressure.  Too high.  160/95.  “why aren’t you on medication for this?”

I said my blood pressure was normally lower, and I added sweetly that I was feeling quite stressed right now, and it might not be an accurate measure.

“follow up with your GP” she snapped. 

She asked how much weight I’d lost. 10kg. I told her I’d switched to Ozempic, and the dose.  She argued with me and told me I must be mistaken.  I told her I was pretty sure.  “pretty sure” she said sarcastically.  “Its important you KNOW these things, can’t you remember?”

Second time she took a stab at my memory. I pulled out my notebook and told her I’d written it down.  I was correct.

She rambled about it not being correct to consult another endocrinologist.  I said again, it was only for weight control. Its his special interest and it has been the thing causing me the most misery. 

I asked her if I needed a follow up pituitary MRI, because if all my hormones were fine, then why did I need to spend money on an MRI?

She told me I didn’t need an MRI!  That I’d already had one!  I said yes, almost two years ago, my instructions were to get a follow up MRI but I was querying whether that was really necessary. 

She looked at my notes, actually read her own instructions to get an MRI.  And flipped. “Yes, of course you need a follow up MRI”

I told her about the bony lump that is growing just above my left temple.  She felt it.  She said I need a CT brain as well, with focus on the bony tu…lump. 

She hates when there’s something objectively wrong to investigate. She’d much prefer to keep me cast in the role of “difficult Patient”.  I’m not a difficult person, I have a very complex medical history.   And I was almost in tears by this time.  I hate confrontation, and I hate rude people. I generally shut down and it upsets me. 

I asked if she’d done the geneticist referral and if I could see the doctor privately because I wanted to expedite the appointment, not wait two years on the public list.

She looked at me as if I were the most stupid child she’d ever come across. 

“You CANT see a geneticist privately!  Don’t you know anything?  You can only see them at the public clinic.  And you won’t see him, I’ll send one your records and they’ll decide if testing is necessary.  And anyway, its not URGENT.”  She said “urgent” dripping sarcasm.

I almost snapped and said I resented her implication that I was being a hypochondriac, I have been seeing her for almost three years and she hasn’t gotten any closer to figuring out whether my bone density is a rare, but completely benign finding, or whether there was a pathological process going on.

Extremely high bone density is related to some types of cancer, and degenerative diseases.  I want to know what my fracture risk is. I want to know what my cancer risk is.  These are valid questions. I want a diagnosis so that I can have a prognosis. 

I said “I know its not medically urgent but I’d really like to get to the bottom of it.”  Super polite.  Smiling. Tears threatening to spill.

She said she had NOT yet arranged the consult, but she would.  I mean, she only said she’d do it nine months ago.  These things take time, I guess.  Or they do when you don’t give a toss about your patient.

She said she HAD gotten to the bottom of it, that I had a form of osteopetrosis. “don’t you REMEMBER?” she said for the third time.

Honestly, any doctor who’s happy to be sarcastic about my apparent lack of memory SHOULD see it as a rather worrying symptom rather than something to badger their patient about.  She should have been concerned.  I had a total blank this morning, I had forgotten where they were located.  I googled, and they had two clinic locations. I had to call and ask where my appointment was.  Then, I got lost on the drive.  Took a wrong turn, even though I was following my GPS. I was almost late because I got lost.

I put this down to stress, and dreading the appointment.  But I’m noticing things like this more and more.  I’m not worrying, but I’m noting these events down.  She should have been concerned, not sarcastic.

She said she didn’t want to see me anymore (no shit!) and I was to see Prof E who is very good. Much better than you, I thought to myself, but said nothing.   What’s the point of lowering myself to her level?

I asked if I could have a copy of my bloodwork because I didn’t want him repeating all these tests unnecessarily. 

She said she would have her receptionist do it because she didn’t have the time to be printing off bloodwork. 

Okay.  It was right there, on the screen, she had to hit “print” and it would have printed off.  But hey, she’s a doctor. They don’t hit “print”. 

I thanked her very much. And rose to leave.

Her receptionist was lovely and told me she’d email me all my bloodwork, but it would take a while.  Maybe tomorrow?

I assured her that was fantastic and thanked her for doing it for me.

I paid my $140 for the rudest consult I’d ever sat through (my rebate was $125 so I was only $15 out of pocket) and I left.

I sat in my car shaking for a while.  It’s a half hour drive home.  I contemplated trying to find a café and just sitting and breathing and meditating for a while.  But I wanted to get home. I went through my five-minute body scan and my favourite five minute relaxing meditation.  It helped me calm down and drive home.

Now I have to book a pituitary MRI and a brain CT.  Not urgent, obviously.  Although the bony growth on my skull might be.  So maybe I will book it soon.  I’ll find out what the out of pocket costs will be and then decide.

That was a waste of my morning.  I sat there and was treated pretty appallingly for no reason other than she doesn’t like complicated patients and her ego is twice the size of her body.  I’m glad to not see her anymore and I’m even more glad she’s sending all my bloodwork over.  I know there are several bone turnover tests that she’s never done, I will make an appointment with my other endocrinologist and hopefully he’ll investigate further. Hopefully he’ll be interested. 

I would have thought most doctors would be interested in rare diseases, but I’m surprised that most seem to see rare disease as a pain in their ass.  Probably because they don’t know much about it, and they don’t like to see themselves as anything other than expert in everything.  Rare diseases make them feel incompetent…but my endocrinologist makes herself incompetent by allowing her emotions to run her consult and allowing her rudeness to show. 

Good riddance.  Can’t say she helped me at all.  I have work to do now so I can’t let her ruin my whole day.  Have to get on with it. 

I would love to send her a note saying its always just as easy to be kind. TO be polite. To remember she’s dealing with an actual sick person and maybe try put herself in her patients shoes once in a while.  That yes, she’s the expert, but she’s not living with severe daily pain, severe, daily fatigue, regular allergic reactions, taking 18 medications daily just to have a semblance of a life, consulting with multiple doctors none of whom agree or would even CONSIDER TALKING to one another.  Too hard to co-ordinate. 

Not too hard.  Not important enough. To them.