Why I’m sacking my GP…and why maybe I can’t. Opioid Hysteria

The last time I saw my GP she was, to put it mildly, a snippy little bitch.  She allowed her personal feelings to show very clearly, and that wasn’t the first time.  But it is about the last time I want to be in that position. Her personal feelings coloured her treatment of me, and not for the better.

I nickname her “Dr Efficient”, because she is.  Very efficient.  I started seeing her when I couldn’t get appointments with my first GP, who is basically Dr Lovely. He is empathetic and kind, and way back when my kids were in kindergarten, all the women used to go see him, mostly for tea and sympathy (and a refill of their antidepressant scripts).  I know he gets lots of depressed woman seeing him.  Consequently, he’s always booked up. And because I have brain fade, I can’t plan a week in advance, so I could never get an appointment when I needed one.  When you’re chronically ill, you have your regular appointments for pain medications and other scripts…and then you get those times when something happens, and you need to be check out…today.

So I started seeing Dr Efficient. I could always get an appointment with her, because she’s blunt and brusque and there’s no ‘bedside manner’ with her.  Most people don’t like her. They want the soft and fluffy.

I don’t need that anymore.  I’ve been sick for almost 15 years.  Fluffy is largely a waste of time for me. I don’t need the pep talk.  I need an analytical, efficient doctor.  And that’s what she is.

However, she’s also judgmental, immature (she only graduated two years ago), and rigid.  NOT good things for any doctor.

And she gets frustrated at best, and openly annoyed at worst, when I show up with a ‘laundry list’ of problems.

And she gets doubly pissed when my problem is weight gain.  Massive weight gain. Massive weight gain that I can do NOTHING about.

She clearly doesn’t’ believe me.

And when you start a consult with a doctor not believing the patient, there’s only one way for it to go from there, and that’s down.

But this is my situation. I have severe Eosinophilic Esophagitis (EoE).  I am allergic to many foods, in the sense that they cause my Eoe to flare.  That is, my esophagus closes and I can’t swallow solid food.  Often I can’t even swallow liquids, which I’m told is very rare.  I often can’t swallow medications, I can’t even swallow water. 

To minimise this, I live on a very restricted diet of pureed vegetables (a limited list), fruits, and some chicken and beef.  Generally slow cooked until its fall apart tender.  On rare occasions,  I buy really good steak, and Gamerboy cookes it perfectly, medium rare, so its tender and delicious. And I chew and chew and chew until I can swallow it.

That’s my diet.  Most days are less than 1000 calories.  Some days are less than 500 calories.  Occasionally I’ll eat something like custard, sweet and yummy, as a treat.  Very occasionally though.

I don’t eat cakes, biscuits, chips, chocolate or any “bad” foods, and I don’t drink sodas.

But I look like someone who does.  I am 25kg overweight. 

And I exercise.  Exercising really hurts, due to my severely degenerated spine, my paralysed left leg, and my rheumatoid arthritis, which could cause any joint on any given day to be flaring or ALL joints to be flaring. I also have cholinergic urticaria, which is essentially and allergy to body heat, so I need to take 4x the daily dose of antihistamines at least an hour before my exercise sessions (as prescribed by my immunologist).  And I’ve had two experiences of exercise anaphalaxis.

Still, I exercise.  Despite having many very good reasons for not exercising,  I do a 30 minute spin classes three or four times a week.  It is HIIT (High Intensity Interval training) which is the best kind of training for fat loss, and cardiovascular fitness.  When I hit the gym, if I’m going to go to all the trouble of getting myself there, I work damn hard while I’m there.

I am a qualified personal trainer.  I have done studies in nutrition and exercise and weight loss.  I know how this works, down to the ATP in your cells.

Why do I do this?  Apart form the obvious benefits, I have had anorexia nervosa with bulimia since my teens. I have Body Dysmorphic Disorder, which means when I look in the mirror I appear even fatter to myself than I even am.

Being 25kgs overweight causes me significant psychological distress.  I have become a recluse. I don’t want to run into people who used to know me, because I know they’ll be shocked at my weight. I can’t fit into any of my clothes.  All I can wear is huge baggy t-shirts and sweats.  My life is a misery due to obesity.  So I work hard to try and move this weight.

I have worked hard all my life to be fit, and lean.  The only times I have gained weight is when I became hypothyroid (Hashimoto’s Thyroiditis) and they treated me with thyroxine.  That didn’t work for me, and it took TEN years for me to find a doctor who would prescribe the equivalent of Armour thyroid. I was 15 kgs overweight for 10 years, despite a strict diet and running 5kms almost every single day.  THAT was a long, hard battle, once I finally started desiccated thyroid extract (a combination of T4 AND T3) it took three months for the weight to start to go.  And then it was gone…in a month. I was back to my high school weight.  I could fit into my year 10 formal dreass again.  I had been obese for ten years because doctors refused to listen to me.  Horribly negligent.

And now here I am again.  This time, it’s a different cause.

Some medications cause weight gain. TNF blockers for my RA (Humira and Enbrel) caused me to gain ten kgs, I retained the weight while on Orencia (T cells) but I started losing weight while on Xeljanz (JAK inhibitor).  It took me TWO years to lose the weight I gained from TNF blockers. Again, doctors didn’t believe me. But at that time my RA was better than it is now, and my spine was not as degraded and my left leg wasn’t paralysed. I had to exercise for two hours most days to lose that weight.  But I did it.

That is NOT possible now.  But doing 4 or 5 spin classes a week SHOULD be enough!

Corticosteroids (prednisone) has NEVER caused weight gain for me. Never.  Prednisone kept my RA in check and I had less fatigue and less pain and therefore I could exercise harder.  Hence, NO WEIGHT GAIN!  The effects of prednisone on weight are easily counteracted with exercise.  NOT true of the other medications I’ve listed.

Then I started Actemra (IL-6 inhibitor) and gradually started putting on weight again. Despite stopping actemra, the weight continued to climb. There was NOTHING I could do about it.  The weight caused me great distress, all my doctors ignored me.

I saw my gynaecologist for HRT, (I’d had my ovaries removed, and I had to fight for that too) hoping that testosterone would help.  It made me feel better, but no weight loss.

My endocrinologist decided I was an idiot and tried to tell me that I needed to count calories and I was probably eating more than I realised…UM NO!!! NOT TRUE.

My Gastroenterologist, who just shrugged (she knows that my esophagus is too narrow for solid food, she knows I live on purees, but I guess she thinks I eat bon bons all day too. )

And my immunologist who just told me to keep on dieting and exercising, and that it would ‘help eventually’.  Bullshit. Its been over two years, and its not helping AT ALL.  Its very, very distressing for me to be this weight.  Why in the world would I continue to complain and secretly eat junk food?

The Chicklet has seen my distress, and she said she’s going to go with me next time, to all of these doctors, and tell them that I barely eat. She’s with me at every meal. She wants to vouch for me.

Which is beautiful of her, but I know they still won’t believe me.

And then I had an MRI, requested by my endocrinologist, which showed I have a pituitary tumour.  She suspected a tumour and when it turned out to be there, she started denying that it was a problem.  WTAF. 

I did my research, as I do.

My tumours are non-functioning…a non-functioning adenoma.  It’s a microadenoma, so my endocrinologist sees it as an ‘incidental finding’.  It’s clearly not.  She thinks we just have to give me an MRI every year to check on its growth.

I have confirmed adrenal insufficiency.  That means my body doesn’t make enough, or any, cortisol. Everyone assumes this is because of my long-term prednisone use.  However, it could be because of the pituitary tumour.  Pituitary tumours can do two things :

1. secrete excess hormone, causing health problems. 
2. And 2) suppress hormone production, causing health problems.

My endocrinologist has tested my hormones and they are either normal, or just about normal.  Not in the treatable range.

BUT my Growth Hormone spot test is very low.  A spot test doesnt’ mean much, but it does warrant further investigation.  Symptoms of not enough Human Growth hormone?  Weight gain, inability to lose weight, inability to build lean muscle tissue, amongst other things. Low growth hormone severely impacts quality of life.  But my endocrinologist refuses to test further.  Even though I have all the symptoms, and my quality of life is severely impacted.  STALE MATE.

Additionally, I have low ACTH, due to adrenal insufficiency.  ACTH is the hormone that causes your adrenals to produce cortisol.  We know I don’t make enough cortisol.

BUT.  ACTH also controls DHEA production. It is a known fact that if you have adrenal insufficiency you also don’t make enough DHEA.   Effects of low DHEA?  Weight gain, inability to lose weight, inability to build lean muscle mass, fatigue, no stamina.

Are you getting the picture?

I know all of this, because all of this is readily available on the internet.  I have read the scientific studies.  But doctors don’t like to prescribe because the studies don’t ALL back up the claims that DHEA is harmless and causes weight loss.  Gym junkies and weight lifters use it as a supplement for muscle gains.

Trust me, it works.

It especially works if you’re DEFICIENT, which in the case of DHEA is a definite.  I believe that I also might have low growth hormone. 

How do we find out?  Blood tests. Growth hormone is a little more difficult, admittedly. But still. Its my life we’re talking about. Quality of life. THAT MATTERS.  Doctors who look at their labs and decide that’s close enough and don’t listen their patients and don’t care about their patient’s day to day quality of life are BAD DOCTORS. What’s the point of having ‘normal’ blood tests if you can’t get out of bed?

So this is the background. Huge point of contention. I have plenty of evidence and a good working theory for what is wrong with me. The pituitary tumour is there. I have several studies, all less than four years old, backing my theories.

Will my endocrinologist help?  No.

Will my GP help?  Also no.

Back to my recent appointment with her.

When I walked int the appointment, it started badly with her saying “You saw Dr Lovely last time”.

I responded “Yes, is that a problem?” 

She stated that it wasn’t, that she could see his notes and he could see hers, as they were in the same practice, but it clearly WAS a big problem.  I reminded her that she was on leave. She agreed but mentioned the other time I saw him, that she WAS at the practice that day.  So she was PISSED.  She noticed I was there, and noticed that I’d seen a different doctor to her.  I guess her ego was bruised. Or some kind professional turf war.  Very Unprofessional if you ask me.

I wanted to tell her that I see Dr Lovely to discuss Gamerboy, because HE has lots of health issues, and HE can’t get any help either.  I also wanted to tell her that Dr Lovely got impatient and snappy with me too, and I will NEVER be seeing HIM again either. But it seemed unnecessarily adversarial.  Pointless. Things were cold enough.

I asked her for pain medication script refills.  While I was in the waiting room I’d received a call about my case against the surgeon who almost killed me.  Just talking about it put me into a panic attack.  I asked her for some Valium.  She lectured me that I’d had a script in June, what happened to that?  I reminded her that June was FOUR months ago and the script was only for ten tablets.  That when I had bad anxiety due to PTSD from almost dying I took it as a ‘rescue’ medication, and I usually needed two over the course of a few hours to calm down. So that’s five days in four months I took Valium.

She grunted, clearly unhappy, but wrote the script. But now I was pissed, because I was in the middle of a panic attack and she chose to lecture me. I was visibly upset, I was shaking, my voice was trembling.  She should have stopped the consult.  Given me some empathy.  Told me to breathe.  Slowed me down.  Maybe offered me a glass of water…but she doesn’t have a bedside manner, remember?

Ok, so I was wrong about not needing the fluffy. Everyone can have a terrible day, and can need a little compassion.

She just ignored my distress and kept writing. Scripts.

I looked at my list.  Bone density scan.  My spine is worse, my right leg is now becoming numb sometimes.  If I lose the use of my right leg, then I will be wheelchair bound.  She cut me off and told me I needed another MRI, so she wrote that too.  No sympathy.

No sympathy, no urgency, despite this being a very serious development. Would you like to be paralysed and in a wheelchair?   No, not if you have a choice about it.  I need urgent surgery. I know this. She knows this. She also knows that I have PTSD, and surgery is out of the question, without intensive treatment and much support. She doesn’t have the time to organise that.  It’s a pain for her.

I looked at my list again.  I knew I was forgetting something, but I couldn’t read my own writing.  I was so distressed (mid panic attack) and she was badgering me, telling me that was a lot I was asking for.  I reminded her I’d booked a long appointment for this reason.

She didn’t like that, and kicked me out exactly at 20 minutes, and as I got into my car I burst into tears.  I’ve been seeing this doctor for around five years.  I am always polite.  Yes, I ask questions and I request referrals and treatment plans, and I bring in studies to back up my theories.  I guess that’s really, really annoying for doctors. In fact, I’m sure it is.  But that’s just ego, lets face it. 

I might actually be right.

After seeing her for so long, she should not make me cry.

And then I realised the main reason I was there was to get a thyroid script.  Which I needed to pick up my compounded thyroid medication, which I needed tomorrow. 

Having no other option,  I sat in my car and booked another appointment for the next day.  I used the iphone app. No way did I wasn’t to talk to a receptionist.

Then I drove home, a complete mess.

She didn’t help me. She harassed me about my ‘drug use’…Valium for PTSD.  She dismissed my weight problems and told me it was prednisone that was causing it. Bullshit.  I’m now on less than half the prednisone I was on when I was lean. That just makes NO sense and is lazy doctoring.  And she was openly annoyed that I had more than one issue, even though I’d made a long appointment.  And there would have been plenty of time to cover it all, had she NOT lectured me.

It’s clear she was really annoyed that I’d consulted a different doctor.  But now I intend to find a new doctor.  I’m done with her bullshit. I’m done with being treated like a child.  A very naughty child at that. 

I am every bit as intelligent as she is.  I know as much about my body as she does. I suspect I know far more. And I am a highly motivated and COMPLIANT patient.  I am always polite.  The only time I’ve shown emotion is during a panic attack, and I’m still ridiculously polite, even then.

But I am done being treated like crap.  I give her respect, I deserve the same.

The next day I had to go back for my scripts. I requested them, telling her that I was too upset yesterday to remember them.  She was overly chatty and tried to engage me. I was polite, but gave her largely simple, closed responses.  She tried to ask me more about my spinal problems, but I politely shut her down.

She definitely realised she’d been a bitch the day before. And that I’d had to come back because she’d been a harassed me and kicked me out before I was done.  It’s a twenty minute drive to my GP.  Its not easy for me. It’s my whole day when I have to do it (unless the Chicklet can drive me).  Dr Efficient realised that she’d taken out her bad day on me. And THAT is never OK.

I NEVER do that to her, or any of my doctors. You’ll just have to trust me on that.  But I never, ever do. I’m an adult and I remain polite and professional, always.

I’m done with her, emotionally.

The problem is I may not be able to find another GP who will prescribe opioids. Last time I looked for a new GP I saw six, all of whom refused to take me on as a patient specifically BECAUSE I take opioids. 

So I might be stuck with her.  But our relationship is no longer positive of productive.  But I need someone. 

There are other things she ignores. 

My hearing loss is getting worse.  She ignores it.

My arms and hands go numb quite often. Usually at night in bed. I’m not lying on them, I just wake up with numb hands and arms.  It creeps slowly up my limbs…and then over the course of an hour or so, it dissipates and I can use my arms again.

Same happens with my legs.  It used to be just one side, so I was afraid of strokes and TIAs, but its both sides now. Its like a slowly creeping paralysis, something neurological, but it always goes away.  Therefore, she ignores it.  It goes away.

My fingertips and toes are cracked and dry and bleeding. They hurt.  Steroid cream is the only thing that fixes it, but I can’t keep putting steroid cream on forever. I’m pretty sure my foot is psoriasis…which is pretty important in terms of my arthritis diagnosis. I have asked for a skin biopsy, she refuses.  It’s very possible that I actually have psoriatic arthritis, not RA. Or both.  And it DOES matter because some treatments work better on one type of arthritis than the other.  But I just superglue the cuts shut.  It’s the best remedy I can come up with.

Also, despite having my ovaries removed, I am still producing OESTROGEN. This is, ofcourse, impossible. It should be fascinating, but hey, not with my doctors.  They just brush me off. My GP (Dr Lovely) actually said in an annoyed tone “well, does it MATTER?”

Yes. It matters. 

I had surgery to remove my ovaries for a reason. Cleary the surgeon was negligent and left some ovarian tissue behind. I wanted my ovaries gone so that I would never get ovarian cancer. Now I went through that surgery and still have the same risk of ovarian cancer. So I went through it for nothing.  I get ovarian pain still, I assumed it must have been something else, since I don’t have ovaries. But if I’m still making estrogen, I still have something there.  I can’t go through another surgery (PTSD).  They pumped me FULL of HRT, which is not a great idea when you are NOT menopausal.

And the best part is that it was ME who noticed that my estrogen levels were still high, as in NOT menopausal.  NONE of my doctors – two GPs, a ob/gyn and an endocrinologist – noticed this aberration.  Four doctors. Missed it. Why? Because they’re sick of me.  Sick of me complaining about my massive weight gain.  So they give me the eye-roll and send me away.

But I still have ovarian function. And yes, that’s a problem for me.

I have severe allergies.  Reducing my prednisone means I have permanently blocked nose, that somehow manages to still run constantly.  It bleeds and hurts.  I can’t breathe properly. None of the allergy meds work well enough, and it had a pretty huge impact on my quality of life. But hey, ignore that too.  Its only breathing. No biggie.

And of course, I really would like to be able to eat solid food one day.  And get rid of the constant revolting diarrhea.  Every freaking day of my life.  And that severe, undiagnosed upper GI pain that happens a couple of times each week.

Oh and the urinary retention.  It hurts a whole lot, when you need to pee, but you can’t.

Then there’s the fluid retention. Their solution? Just keep taking more and more diuretics.  Clearly the fluid retention / odema has a cause. Clearly that cause is hormonal.  Pituitary tumour, anyone? But no. Just keep taking Lasix.  Let’s not bother figuring out the cause, we’ll just treat the symptom, despite it being a pain in the ass having to pee every five minutes! And there being a bunch of other symptoms to treat, all endocrinological, all related to my hypopituitarism.

There’s probably more. I can’t remember right now.  But yeah, that’s a long list.  And I’m a problem child. And she’s tired of all these problems that she can’t fix.  So tired that she won’t even deal with one at a time. And she ignores my pain levels.  And lectures me about my pain medication use.  Even telling me that she did a lot of time in addiction medicine.  (Your point?  You realise I’m not an addict, right?)

So now I’m looking for an integrative GP.  One who will prescribe DHEA. I can buy it online, but I won’t know for sure it’s of good quality. So I’ll try this first.  Its such a simple thing.  Of course it will take me weeks to get an appointment. Maybe three or four attempts to find a doctor who will listen.  They will have to run their own tests, they all do. And then maybe they’ll be willing to prescribe.  So maybe early next year I’ll have a script.

But I won’t give up.

I’m seeing a local GP next Monday and I’m going to ask her if she will take me on as a patient.  She is the Chicklet’s GP, and she was wonderful with her.  But I am far more complicated.  She probably wont want me.  And most doctors no longer prescribe opioids UNDER ANY CIRCUMSTANCES and don’t take on patients who are dependent on opioid pain relief.  They refer to the public hospital pain management clinic, which has a one year to eighteen month waiting list.  And once you get there you have six months of mindfulness courses to get through and some physical therapy. And then at the end of all that, they refuse to prescribe opioids anyway.

Opioid Hysteria has reached mass effect in Australia.

I see the head of the public hospital pain management usnit as a private patient. I know all of this.  And given that he openly admitted that he doesn’t’ know how to treat my pain, this is doubly unfair. 

I need opioids, but I am not an addict.  I need pain relief.  Otherwise my life is nothing but torture.

But I will see her, give her a chance. I will hope, I will pray.  Last time it cost me a few hundred dollars and a few weeks of my time and all refused me.

I’ll let you know how this one goes.

If she refuses me, I will have to return to Dr Efficient.  But I suspect that Dr Efficient might just get rid of me.  Or refuse to continue to prescribe opioids as well.  I have a bad feeling.

But all I can do is keep looking forward, be positive. Be professional.  And treat my doctors the way I would like to be treated…with respect.