Endocrinologist phone consult – its osteopetrosis, and adrenal insufficiency and a pituitary tumour and hashimotos – April 2020

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Wow.  I get that she’s stressed.  I get that phone consults are not ideal.  I get that I’m a complicated patient, and she’s tired of it.

But I am not a child.

My endocrinologist is wildly moody.  Some days she’s lovely, empathetic, compassionate.

And some days she treats me like a naughty three-year-old who dumped their milo out on the ground and made a huge mess!

I am not a naughty child.

Right now, I feel like this is my last appointment with her.  I don’t need the hassle.

But I do need an endocrinologist.

I have:

Adrenal insufficiency, which requires life-long management

Hashimotos Thyroiditis, which is not a huge deal.  My GP can manage that.

A rare bone disease that is something along the lines of osteopetrosis.  There is no treatment, but it needs to be monitored.

I have a pituitary tumour that is currently non-functional. Mostly.  Again, no treatment, but it needs to be monitored for growth and hormone secretion.

And I have had my ovaries removed, yet I am not menopausal.  My estrogen levels are those of a menstruating woman.  Not even pre-menopausal.  I’d kind of like someone to figure out WHY this is so.

Her tone was the first clue that this wasn’t going to be a good appointment.  She asked me how I had been and she cut me off mid-sentence to tell me that there was a hydrocortisone shortage.

Great!  I rely on this medication to stay alive. I will literally die without it.  She told me that it is only the 4mg tablets and she will send me a script for 20mg tablets.

My current doses are 24mg at 6am, 8mg at midday and 4mg at 5pm.  10mg tablets don’t really work, so she told me to take 20mg in the morning and 10mg just after lunch.  That will be reducing my hydrocortisone by 2mg, which is a plus.  For her. Not so much for me.

Ok, fine.  I thanked her and tried to warm up the conversation by being hyper polite. 

She’s comfortable managing Adrenal insufficiency so she just talked over the top of my question.  She reminded me of my “sick day” stress dosing. She gave me explicit instructions should I contract COVID-19:

  • Mild symptoms, do nothing.
  • Moderate symptoms, double my hydrocortisone dose.
  • Severe symptoms, go to the ER and tell them I have adrenal insufficiency. I will very likely have a severe case and require ICU support.

She reminded me that I am a very high-risk patient, because I am immunocompromised and my adrenals do not work.   My body has NO defences.   

I knew this already, but it’s kindof scary when your endocrinologist repeats it four times, to ensure that you understand. 

I get it. Thank you. I am not four.

She sounded quite angry at me that my body doesn’t have any defences to COVID-19, she wasn’t empathetic or kind in her tone, it felt like she was blaming me.  Like I was a complete pain in her butt.

She told me I should be self-isolating and I should also be staying away from my children. I told her we’d all be isolated for the last three weeks. She snapped “Im sure your teenagers haven’t been staying home all that time”.  I (very politely) told her that, in fact, they have been staying home and isolating from others. Even giving up their weekend with their father because he was a risk to me.

She grumped.

She then confirmed that I have IM hydrocortisone at home and that my kids know how to inject me, in case of adrenal crisis.  She hammered me about needing someone else to be able to inject me else I could die.  She was unnecessarily short and blunt.  I’m not usually easily rattled, but her rapid fire instructions and warnings were getting to me.

It was clear that she was harried. She didn’t like my bloodwork, it’s quote “all over the place”.  

I know my bloodwork is all over the place. I have copies in front of me.  My Hb is low, my MCHC is quite low, and my ALP is high (pointing to a problem with my bones, because my AST, ALT and GGT are all very much in the normal range).  My platelets are too high.  These things need investigating.

Combined with my extreme bone density, she should be a little interested in this finding. Given that I’m off all my immunosuppressing medications, my bloodwork is starting to show abnormalities.  Clues.

But she is not interested. She is annoyed. She wants everything to be “normal” so she can keep treating me like a hypochondriac and sending me away.

But I am NOT normal. I am medically complicated. She is NO Dr House by any stretch, she does NOT like a puzzle. She likes the easy cases, and that is so very not me.

I then explained I’d had a spinal fusion.

She immediately got angry with me and asked why I didn’t let her know that I was having this surgery.  Then she became openly sarcastic, and said “well, that was a perfect opportunity to do the bone biopsy to see what’s going on and you just blew it now.”

Excuse me?  I “blew it’???

The last two times I saw this woman she told me in no uncertain terms that she wasn’t going to order a bone biopsy, because my symptoms didn’t warrant it. Yes, there’s something wrong with my bones, but she thought a bone biopsy was overkill.

And now?  I’m being given a hard time because I didn’t tell her I was having surgery?  How was I to know?  I’ve never informed her of my other surgeries. She’s never told me that she wants to be informed.  She’s been pretty clear about having very little interest in me and tried to fob me off on many occasions, dismissing my complaints and openly suggesting I was “overly concerned’ about things that didn’t matter (my bone density).  Suddenly now it really does matter to her.

I told my neurosurgeon about my incredibly dense bones. 

I told my anaesthetist and my neurosurgeon about my adrenal insufficiency and gave them my endocrinologist’s contact details.  I assumed they would contact her.  My anaesthetist told me he would call her.

Apparently no one got in touch with her.  And that’s MY fault. 

She was rude. And borderline nasty.  I don’t need that.  I’m actually feeling pretty emotional right now and I don’t need to be bullied by another doctor who’s in a bad mood because there’s a pandemic.

Fine, I should have let her know, my bad, but how was I to know that?  As I said, she’s a walking mood swing. I tend to dread my appointments with her, because she makes it clear she doesn’t’ enjoy dealing with the complexity and the unknowns. I don’t think its personal, but she makes it personal.

In return, I’m always super polite and even keeled, because I need an endocrinologist.  I have lots of endocrinology type diseases.  BUT I do NOT deserve that kind of treatment.  No one does.

It did NOT occur to me that this was a great time for the bone biopsy that SHE repeatedly told me I didn’t need.   I actually had a lot on my mind. It was a hard decision. I have medical PTSD.  The last thing I was thinking of was a bone biopsy.

Fine.

And then after all her sarcastic rebukes, she didn’t even order a bone biopsy.  She did say that she’d spoken to a colleague who specialises in bones and he felt that I have a form of osteopetrosis.  Which is what I originally went to her about, I asked her if that was the diagnosis way back when, she has always said “no”.  No it IS osteopetrosis.  She refused to discuss it further, or explain what this actually means for me, saying that she would “deal with me” after COVID-19 had passed. 

Fine. 

My bone density result is so rare, that it’s a one in three million finding.  So no one really knows what’s going on with my bones, or what to do about it.  But osteopetrosis is a known disease, and I have several of the signs. 

I get bone pain. And I have early onset osteoarthritis.  I have problems with my bone marrow and Im anaemic.  There are potential complications, but no one is sure what this diagnosis means.  So I wait.  I was clearly not going to argue with her today, nor push her for more information when she was clearly pissed off at me.

I told her that my surgeon did say that my bone was incredibly hard, that he was afraid he’d break his instruments.  She gave a deep sigh and said “whatever, I wish you’d been smart”

And then lectured me again “but if only you’d told me you were having surgery, I would have asked for a biopsy, you just wasted that opportunity…”

You said that already. 

Her wording was brutal. She could easily have said “It’s a shame you didn’t call me to let me know you were having surgery, it was a missed opportunity.”  But no, she had to lay blame, a lot of it, on me.  It was unnecessarily harsh, it was immature, and it was very unprofessional.

And my response? As always, super polite. I need doctors.  I am always polite.  Very polite. 

I blame her for not being more open about her thoughts.  She has largely been ignoring my extremely high bone density, telling me it’s nothing to worry about.  And to worry if I get a fracture, not now.  She has been dismissive and kept her thoughts to herself.  She ran tests for Paget’s Disease and she feels sure its not that, and so she basically told me to shut up about it.  I mentioned osteopetrosis at the beginning and she told me it wasn’t that, and it wasn’t a problem and to forget about it.

And told me I didn’t need a bone biopsy.  Multiple times.

Ok, I’ll let it go now. But you can see I’m pretty pissed! 

Respect needs to run both ways.  I am always respectful to her, even when she’s being a dick.  Even while she was having a go at me, I was polite, I even apologised a few times, and I thanked her a few more.   I apologised for doing nothing wrong and thanked her for her rudeness.

I don’t like being abused.

Then she got onto my weight.  She said she didn’t think it was a problem.

Well, it’s a problem for me. She just doesn’t know the answers!  But I agree, I am recovering from my multilevel spinal fusion, I can’t do much about my weight. I certainly can’t exercise.  But I am eating very little and still gaining weight. It’s definitely an endocrine problem.  My IGF-1 is high, she didn’t even mention that.  Basically, she has NO interest in figuring this out, it’s easier to tell me to go on a diet and stop closest eating.

Offensive. 

Again, I am not four. 

If she wants me to believe her and take her advice, then she needs to believe me, and trust that what I’m telling her is true.    I need her help. Why would I lie?

But moving on to my thyroid results, they are “all over the place”.  Favourite phrase today. And she actually said “I am fed up with dealing with your thyroid problems, I am sending you a script for thyroxine which I want you to take. I can’t deal with this natural extract that you’re taking.”

Her frustration was clear in her tone and I found her very rude.  Disrespectful at best.

I take porcine thyroid extract, its called Armour thyroid in the US.  I take this because levothyroxine does NOT work for me.  I have been taking it for a decade.  I had been 15kgs overweight for a decade before that, due to my thyroid not functioning correctly. 

I did my research. I decided I wanted armour thyroid, which has T3 as well as T4.   Levothyroxine has only T4 and relies on the body to convert the T4 into T3.  My body doesn’t do that conversion.  So despite medication, I remain hypothyroid – fatigued, fat and depressed.

Most endocrinologists don’t believe that there is ever a problem with converting T4 into T3, although there are many studies on the topic. Its far from mainstream and this woman is extremely mainstream.  She doesn’t want to learn anything new.  The textbook that she learned from says everyone does fine on T4 only therapy. 

Wrong.

Three months after starting the porcine thyroid extract / armour thyroid I’d lost the 15kgs (without changing my diet or exercise habits).  I felt great. I felt normal at last.  I was briefly healthy but then I developed rheumatoid arthritis. Irony.

I am NOT going back to levothyroxine. Never.  It’s my body.  IF she doesn’t want to be my endocrinologist, fine. I don’t want to be her patient after THAT consult!

I don’t want to start an endocrinologist hunt right now.   Finding new doctors is incredibly difficult and time consuming and emotionally draining.   But I’ll do some research. Post on some forums.  I need someone a bit more interested in complex patients and rare diseases.  My current endocrinologist sees me as a pain in her ass, and she’s happy to let it show.

I was in a good mood before that phone call. I was feeling fine. Now I’m angry and sad.  She put me down, blamed me for things that aren’t my fault, and demeaned and belittled me. 

Not cool. 

Anyway, the adrenal insufficiency.  I’m currently taking 32mg, she needs me to get down to 20mg.

This is ALSO impossible. I’ve been seeing her for almost three years, we’ve been trying to get lower than this ALL that time.  But she still says I have to do it.

Such Bullshit!  She just isn’t listening.  The textbook says I need to be at 20mg.  I’ve shown her plenty of studies that show that not everyone is the same, that some people need a higher dose of hydrocortisone and do far better on a higher dose.  As in, they are far healthier.  She ignored them.

Same old hobby horse.  Less hydrocortisone. Too bad if it leaves you so fatigued you can’t get out of bed. The TEXTBOOK says…

Ugghhhh.

I am not a textbook.  I am not a four-year-old. 

She moved on to my pituitary tumour. My prolactin level is fine this time. It was high last time.  It seems to jump “all over the place” too.  So it’s a non-functioning microadenoma.  Most of the time.

She asked if I’d had the MRI, I said no, I was putting it off until after COVID-19 had passed.  She agreed, it was fine to wait.  Finally, I did something right!

She asked me about the sarcoid screening.  I asked her what she meant and then she corrected herself.  “oh yes, I forgot about that, I don’t think we need to do that afterall”

Another thing she’d kept to herself, but somehow expect me to know. Sarcoidosis can affect the bone and can cause an arthropathy that mimics rheumatoid arthritis and is often misdiagnosed as such.   It’s a possibility.

Good to know. But we’re not going to check for it. Ok, fine. 

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