I saw my new endocrinologist yesterday. I was extremely anxious because, to be blunt, my previous endocrinologist was the biggest bitch of a doctor I’ve ever met. She was rude, judgemental, refused to listen, refused to answer questions, refused to have discussion. Her idea of a consult was she tells me what I need to do, and I run away like a good little four year old and do exactly what she says.
When I told her about signs that didn’t ‘fit’ her diagnosis she would get angry. And I mean objective signs, bloodwork results that showed she was wrong. For example, she told me to continue to taper my prednisone, unless my morning cortisol was under 200. If it was under 200, I would have to stay on my current hydrocortisone dose.
My morning cortisol came back at 30. Way, way under 200. She was furious! She’d told me I’d have no problem tapering, that my symptoms were all in my head because they are impossible, that I needed to handle some ‘discomfort’ to be successful in my tapering.
And now she had a blood test result that she herself said meant I could not taper any lower safely.
So she yelled at ME. Disgusting woman.
She kept telling me she would run certain tests, but she never did. This scenario repreated itself over and over. Looking back I I cant’ understand why I continued to consult her. Mostly, I couldn’t get in to see a different endocrinologist.
Also, I had a strong believe that a doctor should still treat me professionally and do their job to the best of their ability, even thought they personally dislike the patient (me).
Thius doctor is incqapabel of putting her feelings aside. TWO of my other doctor warned me that she was writing things asbout me in her correspeondence that were not accurate and ‘did not gel with my opinion of who you are as a person, or a patient.’
In short, she called me difficult, demanding, non-compliant and mentally ill.
Mentally ill is the interesting one though, because almost every doctor does this. Admit a mentl illness and they start ascribing every sigh and symptom to a psychosomatic cause.
I no longer admit to PTSD, because every symptom becomes a sign of unresolved trauma.
I stupidly told my new endocrinologist that I have anorexia nervosa. I was explaining my history wight weight gain and that my wonderful endocrinologist who prescribed semaglutide believed me about my not over eating, yet being 25kgs overweight.
She immediately filed that away.
I then, also very stupidly, admitted to taking opioids for pain. And that was that.
When I explained to her that when I taper down to around 7.5mg I get symptoms of severe adrenal insufficiency, though I am well aware that this is impossible. That this is higher than the physiological dose of prednisone and therefore adrenal insufficiency is not the cause. But the symptoms are the same.
I become so nauseous I can’t keep any food down, not even water, I get orthostatic hypotension, or low blood pressure when I stand up, to the point that I have to lie back down again, and the fatigue is disabling. I cannot get out of bed.
I told her quickly that it is NOT me being a baby, these are real symptoms and it is always the same.
She responded with.
“Ok, well we don’t know why some people experience this perception of disability. Its very much like pain, its very real pain you’re feeling, but another person, in exactly the same situation, does NOT experience pain. And does NOT experience a problem tapering their steroids. It seems to be a part of who you are, in that your perceptions overwhelm you. The only thing to do is to keep tapering, but very slowly.”
And there we have it folks, She just said “its all in your head” in the nicest way possible.
It is NOT all in my head. This is what happens, and it’s a physical thing.
Her response. “Of course its not all in your head, it’s a VERY REAL PERCEPTION. You could try some acceptance and commitment therapy with a psychologiost to teach you to manage the discomfort…”
OMFG. I keep smiling and don’t say a word. But I know that when I get down to around 8mg of prednisone and the wheels start falling off, that this doctor is going to be useless to me. She has decided that due to my mental illness, and my ‘chronic pain perception’ that I am THAT kind of person. The kind that can’t take a little ‘discomfort’. The kind that needs a LOT of help. Weak, ineffectual, pathetic. A loser.
In truth, I am motivated, determined and can take more pain than most people. I know this, but I can’t prove this. I told her I go running on arthritic joints. I push through pain every day.
She smiles benignly and says ‘Yes, I understand’ in the MOST patronising way.
I give up. I know I;m going to pay $300 for this consult, so I may as well get a taper schedule from her. Turns out her schedule is much faster than I have been doing, and she’s advising me to go ‘super slow’.
I tell her I’ve gone slower than this, and she says again “ahh, ok. Well, I fyou need to go slower, that’s fine too. That’s the key, when you start to get those niggly symptoms, then that’s a sign you need to go slower.”
Ok, but its not a ‘niggle’. It’s a collapse. And there are three possibilities here:
- I’m a pussy and can’t take a littlee bit of discomfort. I discount this as not fitting the evidence.
- I’m experiencing ‘prednisone withdrawal’. I think this is rubbish, prednisone withdrawal isn’t a thing. Your body relies on a certain amount of cortisol, when you’re not getting enough, you get adrenal insufficiency. Its not ‘withdrawal sympotopms’ because they don’t go away. I have spent six weeks lying on the couch bein sick as a dog, waiting for the ‘wightdreal’ to pass. It does NOT pass. It does NOT get better. It is NOT withdrawal.
- There is an underlying disease process causing the symptoms I experience. No one can find that disease, so clearly I its all in my head. Personlly, I think its my MCTD kicking back in. I tried to explain to her about the new symptoms, the muscles weakness, she said that was neither her nor there.
Given that she has misunderstood and dismissed the severity of my problem, I know she’s not going to help. She did make one good suggestion, and I will do that: Keep a daily log of how I am feeling, what I have been doing (exercise, socialising- ha! I do not socialise, things that deplete my energy) to see if we can find some patterns or triggers. Obviously I have done this, but no doctor has ever asked to see it, so maybe there’s hope for her. And I have to say, I liked her very much, she’s a very pleasant person. And I need an endocrinologist.
She had no interest in my bone disease, bone dentisy, bone tumour, pituitary tumours. Fine. She questioned my thyroid medication but was accepted that I do better on a combination of T3 and T4 medication. I believe, but I can’t be sure, that this also added to her assessment that I have largely psychosomatic symptoms. She believes that T4 works just fine, but some people have a ‘perception’ that they also need T3.
She profiled me. She profiled me as the fat, fifty, overly anxious, overly health conscious, low pain tolerance ‘worried well’. This shits me more than I have words to describe. Because she ius way, way wrong. And it will affect how she provides care. She will not see anything I tell her as physical. Shje will see everything through a psychosocial lens. She has assumed depression and anxiety that are not there, but hey, most people SAY they’re not depressed, right? It my perception that I’mn not depressed, but she knows I am…
Anyway, point is, her advice is to immediately drop the hydrocortisone. She told me I might feel this for a few days, but it WILL get better.
I told her I can drop it and I won’t feel it at all. That I can drop to 10mg very quickly and I won’t feel it.
She said ‘Ok, do that then.” With her knowing smile. She’s humouring me. Sigh.
Then I am to drop 1mg a fortnight. If that is too difficult, then half a mg a fortnight. If that is too difficult, half a mg a month. She has never had anyone who had to go THAT slow though. She figures I’ll be down to 5mg in six months, so how about I come back in six months, and then we’ll reassess.
I agreed. As if this is a wonderful new idea that I haven’t already done seven or eight times already. I have to present as positive and engaged and determined, I don’t want to be labelled ‘non-compliant’ again.
I then had as fabulous idea. I said to her “Is there a way we can make it so I don’t know what dose I’m getting? If you design the taper schedule,and we package up my prednisone dose in a daily dose? Almost like a webster pack? If I don’t know what dose I’m getting we’ll know if its psychological, or if its physical? “
She laughed nervously. And said “Like a placebo effect? That’s not ethical.”
I said its perfectly ethical if I agree. I’m being told this is a ‘psychosocial’ reaction, so let’s find out. Let’s remove that variable. Lets prove or disprove the theory. After all, this is a pretty serious problem. It is preventing me from getting treatment for many of my disease and I’m being labelled as mentally ill, and getting the wrong treatment if this is NOT mental.
Let’s give me a daily tablet, or couple of tablets, so I don’t know if I’m getting 9mg, or 8mg, or 5mg. Obviously, I can sit down and figure it out, but if I don’t pay attention to the number or configuration of the tablets and just throw them down, I’ll quickly lose track.
It’s the only way to know for sure if this is psychological or physiological.
Not surprisingly, she said this would be too difficult.
Of course its too difficult! If it is shown that I collapse at 7.5mg of prednisone and I don’t know what the dose is, then she’ll have to accept there there is something physiological going on. She will actually have to DO something. If she carries on this way, assuming it’s my psychological ‘perception’ that’s the problem, then she doesn’t have to do a thing, except ‘encourage’ me to continue tapering and seek mental health therapy. Elsewhere.
I actually thought this was an inspired idea, but apparently not.
Never fails to amaze me how little doctors are willing to accept new ideas, or unconventional approaches, or to work WITH the patient. Seriously, this would NOT be that hard to do. If this taper fails, I will push harder for it. It’s the only way I’ll get any help or validation.
In the meantime, I’ll follow her taper. I’m pretty sure I can get to around 9mg without any drama. It’s the Chicklet’s birthday in two weeks, so I want to be upright for that. I will be at 10mg for her birthday, so that’s all good.
I’ll start a journal. And I’ll insist she read it. I’m actually designing a nice little printable. New business idea, health journal printables. I know there are a million out there already but customised to each person. What they need. I’ll let that marinate around in the back of my head while I figure out the perfect health journal format for my prednisone taper, and my opioid tapers, and then I’ll put them out there.
See? Positive. Engaged. Determined. Creative, even. Hardly the downtrodden, beaten, depressed, weak, self-pitying profile she filed me under.
Just another doctor who wants to cherry-pick which parts of my health they are prepared to manage. Who ignores the anomalies so that I may continue to fit into the box she has crammed me into. And who slaps a mental health diagnosis on me as my MAJOR problem within ten minutes of meeting me.
This is how it goes when you’ve been sick for over fifteen years, you take opioids and admit a mental illness. It becomes ALL about the mental illness, and all about the ‘chroni cpain personality’. And seriously, that’s a thing. Spend a bit of time on doctor reddit and find out what doctors think about people who take opioids for chronic pain. Actually, don’t. It won’t add anything positive to your life.
To be clear, I’m not angry, I’m not upset, I’m used to this stuff. I can’t be bothered getting uptight about this, I have far bigger problems. Its just disappointing. I’ll work with her for as long as I can, and hopefully ‘my perception’ of her is entirely wrong. She really did seem like a very nice person, and a good doctor. I just felt she completely misjudged and mischaracterise me.
In the end, she can’t be any worse than the bitch, so roll on with the taper. 11mg today, no hydrocortisone. It’s a start.