I have to start blogging about my appointments again. I keep forgetting what happened, who said what, and what scans and tests I’m supposed to be getting. Today was my endocrinologist and I saw her last in October 2018. Ages ago. I can barely remember yesterday, let alone last year.
Anyway, I forgot I was supposed to have a brain MRI and specifically a pituitary MRI. I remember she told me, but I forgot what her theory was. I think a pituitary tumour would explain some of my symptoms.
Except I forgot and I lost the scan referral. She was not impressed. Ofcourse it was ironic because I’d just finished explaining my current symptoms: exhaustion, nausea, diarrhea, joint pain, memory loss…
She didn’t see the funny side.
She internally rolled her eyes at me. She asked me what the worst symptom was, I told her the exhaustion. I can’t function. I need to drive Gamerboy to and from university, and that means two trips to the city every day. Two hours in the car, total.
I can’t manage that. When I come home after dropping him off, I need to rest. When I come home from picking him up, I am often in so much pain, and so exhausted the first thing I do is drop my back and go to the toilet and throw up.
Its not fun. Its not normal. Its severe exhaustion. The only reason I can do it is because I’m the most pigheaded, stubborn person in the universe. He has worked hard to get this far, to get into his university course, to work through his own anxieties, and fears. I am not going to let my son down.
And there’s no one else.
I had arranged for one of his friends to stay over and navigate the bus system with him, after which he’d be able to do it himself. At least SOME of the time. But she has picked up a part time job, and can no longer do that.
So I have to do it, or he’ll drop out. He can’t drive yet. Thatreminds me I need to book him in for more lessons. And his father won’t help.
(No, I can’t make him.)
But back to my appointment with my delightful endocrinologist. Right after I annoyed her by admitting I’d forgotten the scan, and asked her for a new referral, she checked my most recent bloods.
All looking pretty good. A few things slightly out of range, better than in October though. She’s happy with my thyroid function, I reiterated how exhausted I am. She said “Your blood tests look good. It’s not your thyroid”
I asked her what she thought it was. She said it was up to my rheumatologist to treat my Rheumatoid Arthritis, and thereby reduce my fatigue.
I told her my rheumatologist says that RA doesn’t cause fatigue. She raised her eyebrows. I then told her he believed that my disease was controlled, and the pain and fatigue was all in my mind.
BECAUSE MY BLOOD TESTS LOOK GOOD.
I said there’s more to health than good blood tests.
I told her I was down to 7.5mg of prednisone and that this was too low. I couldn’t function at this level. She told me my symptoms can’t be adrenal insufficiency because that’s the physiological dose of prednisone. I told her I was aware of that. I’m merely telling her how I’m feeling.
“You’re always tired” she snapped at me. “since the first time I saw you, you complained of tiredness”
I calmly said “I’m more tired now. I am not so tired that I can’t function. All I can do is get my son to and from university. I can’t grocery shop, I can’t clean, I can’t wash…I can’t function.”
She said again I should go back to my rheumatologist. I said he won’t do anything, he told me so. I only saw him last week. She said I should go back to my previous rheumatologist. I said she’d told me there was nothing more she was willing to do for me.
She looked at my list of medications and snapped again “who prescribed all of this to you? To tell you the truth I think we’re poisoning you with all these medications!”
“Targin is an opioid. It will make you tired”.
I told her I’d been taking it for years, it wasn’t the cause. She went on to blame three more of my medications that I have been taking for years. I denied them being the problem, and again complained of my weight gain despite exercising more and eating about a cup and a half of food every day.”
She said that didn’t make any sense. I said I agree, but it’s the truth. And then I asked her if she knew what it was like to be in constant pain, constantly exhausted, not able to eat, not able to do much but lie on a couch. Despite previously having been very fit, to effectively have NO life. Yet be responsible for two very high maintenance kids, and solely responsible for their welfare.
She muttered something about ‘chronic fatigue syndrome’ and faded off when I asked her what kind of doctor would treat that.
I said again “I am here for help. Every doctor I go to tells me to go see a different doctor. I get sent in circles and I have no life. Prednisone helps, methotrexate helps and if she didn’t have any other ideas, I was going to have to boost it again for a little while, because I have to get my son to school.
And then it seemed to sink in. That she, like so many other doctors, was blaming me for being sick. Was strongly implying that I was a nut job. Was using terms like ‘chronic fatigue’ and then admitting that she didn’t believe in it as a disease. Was trying to send me on the endless doctor-go-round and not take responsibility. That she wasn’t trying to help at all, she was just trying to get me out the door.
I actually saw her reset herself.
She pulled up my sex hormones, testosterone too high, estrogen good. I told her I knew this and had already reduced my testosterone dose. I asked her what the optimum estrogen dose was, she told me and said she would prescribe a transdermal estrogen cream when my levels dropped low enough.
Ok, good. Progress.
She then looked at her notes from last time, and suddenly remembered about my extremely high bone density. She said she’d forgotten to look into it, but she had spoken to her colleague at the practice, and they agreed all they could do was monitor my condition. I asked her if it was osteopetrosis. She said she didn’t think so, as there was no sclerosis mentioned in the x-ray report. I showed her another recent x-ray of my SI joint which commented on the sclerotic bone. Her x-ray was pelvis and hips, so they should have seen the sclerosis. I said that different people read x-rays differently, depending on what they are looking for. She agreed and said no more about it.
She’s going to wait until something happens. Fine, whatever. I know there’s no treatment, but any doctor should find my bone density intriguing…she finds it annoying because by her own admission, she knows nothing about it.
Doctors HATE when they don’t know the answer.
I asked her what her plan was regarding prednisone, because at previous appointments she’d told me when we got to 7.5mg, she would change the type of corticosteroid, to make it easier to taper down. I also told her my rheumatologist said I should have fludrocortisone, and that it was safer. She rolled her eyes and said that was wrong.
She then laid out a slow taper plan. I told her I’d done this many times before, and I was only going to get sicker. She said we’d test my morning cortisol. It was tested recently and it was 30. She was a little shocked at that, and said we’d test it again. She said anything under 200 and we couldn’t taper any lower. But that my cortisol shouldn’t be that low.
She got a whole lot nicer than, and said again that I was taking too many medications and she believed that all the interactions were ‘like poison’. She asked me who had prescribed all these medications. I said Dr Perrera. She said ‘go back to him’.
I said he refuses to see me. Just like so many other doctors. All fobbing me off onto someone else.
She became much more kind then, and weighed me, took my blood pressure and tested if it dropped when I stood up (it didn’t, or not significantly). She said the weight gain was because somebody decided it was a good idea to take out my ovaries. She said surgical menopause always causes weight gain that is irreversible.
She asked that I please do the cortisol test tomorrow, as she really needed to know what was happening there. And said the pituitary MRI was also important. And to come back in three months.
And that was that. Another difficult appointment with a doctor who doesn’t want to deal with me, who can’t figure out what’s wrong, who thinks I should just get off all my medications and see what life is like (I can tell her).
I don’t blame her though, I’ve already stopped several medications. I stopped the antihistamines, because they cause weight gain. I stopped the reflux medication. And now I’ll stop the metformin that I’ve been taking for over 20 years and see what happens. Her suggestion. See what happens to my blood sugar.
I’ll do the bloods in the morning. I’ll book the brain scan tomorrow. I’m too tired to deal with it. I’m tired of scans and bloods and all of that crap. I think that’s what finally broke through to her I DON’T LIKE SPENDING ALL MY TIME AT MEDICAL APPOINTMENTS, GETTING TESTS DONE OR TALKING ABOUT MEDICAL SHIT. I WANT TO FEEL GOOD. I WANT TO HAVE ENERGY. I WANT TO HAVE LESS PAIN.
When she asked me what a typical day looks like, I almost cried. My life is nothing. I wake up around 4-5am with terrible lumbar spine pain, nerve pain into my butt, and down my hamstrings. It gets unbearable by 6:30 most mornings and I get up. But that’s a slow process. It takes a while before I can walk and get down the stairs. Then I drive my son to uni. I come home. If I eat, it might be a boiled egg. Or a plum. Any more and I’ll just throw it back up. I rest. Read reddit. Read medical studies. Read news. I’ll post a few things to facebook, Instagram. I usually have 5-10 bracelets to make every day. I wash some dishes, or I do a load of washing, or I get groceries and ship my orders. And I need to rest. I feel nauseous, exhausted and by afternoon the pain is unbearable again, and its everywhere. It never lets up, but I get used to it, and push through it. I have to.
But tomorrow, after I’ve had my blood test, I am upping my prednisone. I can’t live this way. I can’t. I will wind up crashing the car or something even worse. Doctors don’t understand. This has been going on for many, many years now. I’m done. Maybe I have to go back to rabidly researching myself and trying to figure it out for myself. I’ve figured out a few of my diagnoses that way. Then leading the doctor there.
The thing is, I’m NOT a doctor. I need one. A good one. I’m going to ring Boy-Wonder immunologist and tell him I can’t cope. And ask what the bone scan showed. If that didn’t show inflammation, I’ll believe them that my RA is controlled, and that something else is causing the pain.
But right now, I have to get functioning again.