I knew this appointment was going to be tough. So much so that I almost cancelled it. It was a few days ago and my weird head symptoms were still going strong (dizziness, severe nausea, headache, balance problems, muscle aches). It was hard to get myself there, I needed a carer to drive me, and I knew I’d be waiting a long time on the hard chairs, because last time I waited for over an hour.
Often a long wait means an empathetic, caring doctor however. So its often worth it.
Given that I know this doctor does not want to take me on as a patient, I didn’t want to deal with it. I was feeling very sick, and I didn’t want to have to fight for treatment.
But Adrenal Insufficiency is a big part of what made me so sick. So I had to go.
When I walked in and sat down the first things she said was “what do you want me to do for you”.
Not a good start. Adversarial from the get go. I reminded her of the phone call, where she listed the tests she wanted (parathyroid hormone, calcium, vitamin D, a few other things) to investigate my extremely high bone density. Also the x-rays she wanted, to look for sclerotic bone. She is looking for Ostepetrosis or Paget’s disease of bone, or something along those lines.
She looked annoyed and said she’d forgotten all about them because she “didn’t know if I would be coming back or not”
I told her I’d had another adrenal crisis, and I needed her help.
She countered that she could do nothing for me until I tapered down to 7.5mg of prednisone.
I told her I couldn’t. I become too physically ill to function at that level, and there had to be a reason. I told her I was tough and I’ve been in pain for well over ten years and I don’t let things stop me easily. But below 12mg of prednisone, I fall apart.
She told me to go talk to my rheumatologist about it, that she prescribed the prednisone, she can handle it.
I told her my rheumatologist has sent me to her.
She sighed. And persisted.
And I got upset and told her I have about 8 specialist doctors and they all tell me to go see someone else. Rheumatologist says go see Immunologist who say see endocrinologist who send me back to rheumatologist.
I told her I couldn’t take the yo-yo prednisone anymore. That I need help. Two adrenal crises in four months, just from picking up some minor bug.
She agreed that Adrenal Insufficiency can be very serious and very dangerous.
She sighed again, but softened. It’s as though she suddenly remembered that I’m just a human being in need of help. She has a concience, because she clearly wanted to send me away, but resigned herself to treating me.
She admitted she was out of her depth with the metabolic bone diseases on the table. Then she sat back and read back her notes from my last appointment. She thought a while, asked a few more questions, and then started making a plan. And it’s a lot…its like once she decided that she would take me on, now she’s going to investigate properly. So here goes:
Adrenal Insufficiency/Addison’s disease
1. She wrote out a treatment plan for me, a letter to keep on me at all times, and most especially to give to the ER docs when I have adrenal issues. The treatment is only 3 days of 20mg of prednisone, no higher. If that doesn’t resolve the issue, I must go to the ER and get IV hydrocodone and fluids. Not negotiable. The letter should allow me to get treated more quickly, but she agreed it would be a full day in the ER. But adrenal insufficiency at the stage I have it requires ER treatment.
2. She told me to get a medic alert bracelet. I told her I have one, but no one ever looks at it. She sighed and agreed, the hospital staff never bothered, it was an issue that had been brought up. She said still better to have one and to put “Addison’s Disease” on there or “Adrenal Insufficiency” rather than “prednisone dependent”
3. She prescribed Solu-Cortef, a self-injector of hydrocortisone to keep with me, in case of crisis. She has referred me to be taught how to self-inject, but more importantly my kids need to know how to inject me, in case I lose consciousness. The injection would be a life saving measure for Adrenal Crisis only. She reinforced again that I have to go to the ER if I start having severe adrenal insufficiency signs and symptoms. So that has to sit in my bag, along with my EPI-pen. I have more and more medication to carry with me always. Need a bigger bag.
Extremely high bone density
1. She ordered more labs. The ones I have had done so far aren’t conclusive. She’s trying to nail down whether it’s a form of Ostepetrosis, or Pagets, or a primary bone marrow disorder. She is also looking for multiple myeloma and other blood cancers, though she doesn’t believe I have any of those. She needs to rule them out, however.
2. X-rays. She has ordered films of my pelvis and spine, looking for sclerotic bone. My bone density is so high, I am literally a one in a million patient. Bone density is measured at the spine and the femoral neck. My spine is 7 standard deviations above normal and my hip is 4 standard deviations above normal. Despite the density, my bones are brittle and fragile and she is surprised that I haven’t had multiple fractures.
Hashimoto’s / Thyroid disease
1. Blood work to follow up on the recent dosage changes. She is very anti dedicated thyroid extract (armour thyroid) but she didn’t change my prescription.
HRT / Testosterone therapy
1. She gave me blood work to see where my levels are at now, so I can figure out what they should be. Having my ovaries removed was a terrible mistake, getting HRT right is extremely difficult. The hormones have caused the massive weight gain and the massive weight gain puts more pressure on my joints. Not to mention the fact that I can’t fit into any of my clothes. She said most people aren’t able to lose that weight, even if the hormones are ‘balanced’ with HRT. We’ll see. I’m hoping once I find the right level of estrogen and testosterone I will be able to exercise hard again, and get rid of the weight. There’s a good chance it will be impossible, however, so I need to work on the psychology of all of that. She is happy to keep prescribing the testosterone cream.
So that’s a lot to do this week…or next week. I’m not seeing her again for three months, so there is no real rush. She said that I’ve clearly had this bone disease for many years, so there’s no need for alarm. I’m curious about he x-rays, I haven’t had plan radiographs done in a long time.
She reinforced the seriousness of Adrenal Insufficiency and said to tell doctors I have Addisions Disease, they will pay attention that way. She said that in time the ER will get to know me, and it will get easier.
I wanted to say that the ER already know me, and its not a good thing because they have me down as a drug seeker, but I let it go.
This doctors really didn’t want to take me on, but her conscience wouldn’t allow her to turn me away. It was a very frosty beginning, but she is a caring person. She would prefer I saw her colleague because he has more experience, but I told her I didn’t really want to start over, go through everything again. She agreed that she would discuss my case with him.
So I feel like I have made good progress on my endocrinologic diseases. Someone who takes Adrenal Insufficiency seriously. Someone who will work with me on my HRT. She cautioned me that my prednisone use was unsustainable, and I’m very lucky that I don’t have diabetes. I reminded her that I take metformin and she said without the metformin, my blood sugar would probably be a mess. My cholesterol is OK. And my cataracts are slow growing. All the major side effects of prednisone, accounted for.
She asked me to taper by 1mg a month and get to 10mg and hold. I’ve tried that so many times now, I know how that will end. But I’ll try, again. Just so she can see it with her own eyes.
On the whole, I’m very happy. She has taken me on, in all my complicated and rare glory and that’s a good thing.