The World's Only Fat Anorexic? Really?

I sat in the office, rocking back and forth slightly. My best friend stood next to me, shifting from one foot to the other, occasionally patting me on the shoulder to let me know she was still there. As we waited, I could feel the fluid in my foot starting to build, like it always does when I sit in a chair normally for too long. I point this out to her, and she says, “It’s okay. That’s why we’re here. We’re going to find out today what’s causing it.”

I scoff. After all, we’ve been in how many doctor’s offices thinking the same thing how many times? I had lost count. The night before, I had asked her, “What if they don’t find anything this time? What if we find out that all the blood work once again will be normal, and this doctor too sends us away saying, “Maybe it’s a pain syndrome.”

He dismissed me.

He still wasn’t as bad as the man who dared call himself a doctor who told me, “When women get to be a certain age, put on a little weight, kids leaving home… you know, maybe it’s depression with a little fibromyalgia. I can prescribe an anti-depressant…”

Depression doesn’t make one wake trembling in pain so badly she can’t open her own medicine bottles and someone else has to do it. Depression doesn’t make someone’s feet, legs, abdomen, chest, arms, fingers and face swell so badly she can actually gain 40 plus pounds of fluid retention water weight over a weekend. Being a ‘certain age’ doesn’t make someone so tired they can literally not hold up their head or have the energy to keep their eyes open, but even with the head nodding and eyes closed cannot actually fall asleep. I’m only forty years old, and I was only 38 when that doctor said that, and I know seventy year olds with more energy and stamina than I had.

But none were so bad as the doctor who told me that his goal was for me to lose a little bit of weight and get up and walk around the block a few times. That, he said, would fix everything.

Stupid doctors.

But this one, he wasn’t stupid. He was young and bright, I could tell. He was an endocrinologist, and my PA had told us he’d helped her diagnose some of her patients in the past and that they had a good working relationship. That was optimistic, right? I could see it in his eyes when I met him the first time. He had, in that one meeting, given me hope. But I’ve had hope before and had it dashed when the results came in. I was trying not to get too hopeful this time, lest the same disappointment hit.

So we waited together, my best friend and I, with me rocking slowly back and forth, sometimes chewing on the side of one of my fingernails, a nasty habit I picked up a few months ago. Doctor’s appointments were really bad for my nail health, I determined.

The door to the exam room opened and without thinking about it, I sat up a little straighter in the chair. I felt my friend pull away from the wall she leaned on and she stood straighter too. The doctor made his way to the round sliding doctor’s chair but before he even sat, he said, “I have your test results.”

I held my breath.

He said, “Your testosterone was normal, DHEA was normal, and while your estrogen is low, you’re not in menopause yet, so I’m not too worried about that. Your thyroid was normal, but your TSH is a little low. I’ll talk to you about that in a minute, but first…”

Here it comes, I thought. I exhaled slowly, then took in another deep breath and forced myself to look up at him.

“You steroid levels are low. You’re 24-cortisol shows you have adrenal insufficiency…”

What? I sat straight up. Did he just say that the test confirmed what we (the PA and us) had been thinking for the past year?

“Okay,” I mumbled. I nodded. “That’s what we thought it was.”

“Who?” the doctor asked.

“My PA, Dr. Merritt’s office. She sent us to you because that’s what she thought it was too.”

He nodded and said, “Well, what we need to do now is send you for stimulation testing, so we can determine why you’re adrenal sufficient, to see if it’s a pituitary problem.”

My friend said, “Ah!”

I smiled up at her and the doctor looked at us dumbfounded about why we were smiling and happy to hear that I was sick. He must have thought we’d gone crazy.

I explained, “We’ve been going to doctors for almost four years now, and no one could tell us what was wrong. But this past year, everything you’re saying, this is what we thought it was, and you’re confirming it. We’re happy to know.”

I’m not sure he understood, but he seemed to at least accept the answer. There was additional talk about steroids and how they had worked, how much the doctor had put me on, the symptoms, the pain relief, the way I felt, and more. He decided based on what I had said to put me on a different type of steroid. I was on prednisone and methylprednisolone, but he was putting me on hydrocortisone, which was weaker in one respect but which also more closely resembls what the body naturally makes, of which I was deficient.

Secondary adrenal insufficiency, most likely due to damage to the pituitary gland in the brain. The damage to the pituitary gland was suspected to have happened when I was hospitalized in 2008. It was either the sepsis that did it, which is not uncommon though it is considered a rare complication, or else the Zyvox medication I took did it. We can’t currently prove it was the Zyvox though. It was a new medication when I took it back in 2008, and so the ultimate side effects are not yet known. The thing is, even if it was the Zyvox, there may be nothing I can do about it, since I had to take it.

You see, back in 2008, the sepsis, what some might call septicemia or septic shock, was so severe that I was treated as an emergency admit to the hospital, and they were working on me when I was admitted like they might someone who came into the hospital ER on their deathbed. I didn’t even have time to breathe or think before they were putting in a central line and pumping me up with stuff… and Zyvox was one of those things that was a last line of defense antibiotic. I either used it or I died. Given the choice, I guess living is a nice thing, right?

So the diagnosis is confirmed. I have adrenal insufficiency… and it’s possible sometimes it’s high too, fluctuating, which is part of why it was so hard to finally nail down. Also, it’s really quite rare to be caused by the pituitary, so most doctors wouldn’t think to go to it, thus why it was so hard to finally get someone to look for it. The reason for it is still not known, but that much is confirmed. I have a lab report I can actually look at, point at it and say, “There, this is it.”

I needed that. I needed something that showed me that all I’m feeling is not in my head. Well, actually it IS in my head, but you know what I mean….LOL

The good news is I know what’s wrong with me now, but the bad news is, we don’t know for certain what’s causing it. So next week, I have to go to a lab and take a stimulation test. They will inject me with a stimulating agent and then draw blood at baseline, fifteen, thirty and sixty minutes. This will tell them if the adrenal insufficiency is from the adrenals or the pituitary. Depending on which one it is, the treatment will be altered accordingly.

So he has me doing the text next week, then I start hydrocortisone, twice per day (to mimic the diurnal cycle) and then I retest my free cortisol levels again in eight weeks. My thyroid meds are also going to be adjusted, since as the insufficiency is treated, the thyroid might work better.

It’s common for people with this condition to be anorexic. Not the ‘nervosa’ type of anorexia, but the type where the body is starving itself by not processing food properly to get nutrition or energy from it. He told me, “We’re going to want you to gain some weight…”

Lynn and I started to laugh. The last thing I need is more weight. LOL Ah, funny. But he made sense when he talked about how I might have gained some weight due to fat increase and water/fluid retention problems, but while I was gaining fat weight, I was losing muscle mass, and that explains the weakness and the muscle aches and pains. I was probably the world’s only fat anorexic. Can you imagine? Literally, my body was ‘eating’ itself for fuel and energy.

Anyway, he said that by gaining back some muscle weight, it will actually help to increase my metabolism, help stop the muscle aches and pains, and more. He said my lab results explained everything I had told him in our first visit I was complaining about or suffering from. Everything. With proper treatment, he said it should all improve.

He did, however, tell me it will take time. Much like a diabetic needs insulin to break down glucose, the body needs cortisol for so many things, including energy, stress management (both emotional and physical stress), pain-reduction, and more. The body has changing demands on the amount of cortisol it needs. Unlike diabetes, though, where a person can test their blood sugar and monitor their blood glucose and adjust their medication accordingly, there is no simple at-home test to check for your cortisol reaction levels. So treating this condition requires a lot of trial and error until we learn what the normal cycle of the body is, and get it regulated to that cycle.

In the meantime, it means I’ll feel better just by starting treatment, but I won’t feel ‘good’ right away, and it might take some trial and error. I can live with that.

The hard part this week is that in order to do the stimulation testing next week, I’ve had to completely come off the steroids, which means I am currently in a lot… and I mean, a LOT of pain. I have literally done nothing but sleep for the last four days, waking only long enough to get something to drink and then going back to sleep. I’m groggy, achy and in pain, but I’m happy to know it will all be over soon. Next week, after the test, I’ll start on new meds, and I should feel better almost instantly, and then it will just get better and better as the body adjusts to having the right meds.

Anyway… I need to get some food in me. I haven’t eaten much the last few days, and that’s not good. I just wanted to share my news, my good news, so you all knew how happy I am about it! I wish I wasn’t feeling so lousy – it’s literally taken me two ½ days to write this blog post! – but I know there’s an end in sight… I will feel better. Not fixable, but treatable, and I will feel better. There’s a lot more to it I’ll tell you guys about later when I have more energy, about how it’s treated, the major, and I mean major, lifestyle changes I must make, the fact I’ll have to wear an ID bracelet or necklace and carry stuff with me in case I’m injured or in an accident, etc. But for now, we’re just going to be happy that I have a diagnosis and that there IS a treatment to help me.

Thanks for reading if you made it this far. I’m not sure I even read all I just wrote!

Love you all.

Love and stuff,
Michy

I sat in the office, rocking back and forth slightly. My best friend stood next to me, shifting from one foot to the other, occasionally patting me on the shoulder to let me know she was still there. As we waited, I could feel the fluid in my foot starting to build, like it always does when I sit in a chair normally for too long. I point this out to her, and she says, “It’s okay. That’s why we’re here. We’re going to find out today what’s causing it.”

I scoff. After all, we’ve been in how many doctor’s offices thinking the same thing how many times? I had lost count. The night before, I had asked her, “What if they don’t find anything this time? What if we find out that all the blood work once again will be normal, and this doctor too sends us away saying, “Maybe it’s a pain syndrome.”

He dismissed me.

He still wasn’t as bad as the man who dared call himself a doctor who told me, “When women get to be a certain age, put on a little weight, kids leaving home… you know, maybe it’s depression with a little fibromyalgia. I can prescribe an anti-depressant…”

Depression doesn’t make one wake trembling in pain so badly she can’t open her own medicine bottles and someone else has to do it. Depression doesn’t make someone’s feet, legs, abdomen, chest, arms, fingers and face swell so badly she can actually gain 40 plus pounds of fluid retention water weight over a weekend. Being a ‘certain age’ doesn’t make someone so tired they can literally not hold up their head or have the energy to keep their eyes open, but even with the head nodding and eyes closed cannot actually fall asleep. I’m only forty years old, and I was only 38 when that doctor said that, and I know seventy year olds with more energy and stamina than I had.

But none were so bad as the doctor who told me that his goal was for me to lose a little bit of weight and get up and walk around the block a few times. That, he said, would fix everything.

Stupid doctors.

But this one, he wasn’t stupid. He was young and bright, I could tell. He was an endocrinologist, and my PA had told us he’d helped her diagnose some of her patients in the past and that they had a good working relationship. That was optimistic, right? I could see it in his eyes when I met him the first time. He had, in that one meeting, given me hope. But I’ve had hope before and had it dashed when the results came in. I was trying not to get too hopeful this time, lest the same disappointment hit.

So we waited together, my best friend and I, with me rocking slowly back and forth, sometimes chewing on the side of one of my fingernails, a nasty habit I picked up a few months ago. Doctor’s appointments were really bad for my nail health, I determined.

The door to the exam room opened and without thinking about it, I sat up a little straighter in the chair. I felt my friend pull away from the wall she leaned on and she stood straighter too. The doctor made his way to the round sliding doctor’s chair but before he even sat, he said, “I have your test results.”

I held my breath.

He said, “Your testosterone was normal, DHEA was normal, and while your estrogen is low, you’re not in menopause yet, so I’m not too worried about that. Your thyroid was normal, but your TSH is a little low. I’ll talk to you about that in a minute, but first…”

Here it comes, I thought. I exhaled slowly, then took in another deep breath and forced myself to look up at him.

“You steroid levels are low. You’re 24-cortisol shows you have adrenal insufficiency…”

What? I sat straight up. Did he just say that the test confirmed what we (the PA and us) had been thinking for the past year?

“Okay,” I mumbled. I nodded. “That’s what we thought it was.”

“Who?” the doctor asked.

“My PA, Dr. Merritt’s office. She sent us to you because that’s what she thought it was too.”

He nodded and said, “Well, what we need to do now is send you for stimulation testing, so we can determine why you’re adrenal sufficient, to see if it’s a pituitary problem.”

My friend said, “Ah!”

I smiled up at her and the doctor looked at us dumbfounded about why we were smiling and happy to hear that I was sick. He must have thought we’d gone crazy.

I explained, “We’ve been going to doctors for almost four years now, and no one could tell us what was wrong. But this past year, everything you’re saying, this is what we thought it was, and you’re confirming it. We’re happy to know.”

I’m not sure he understood, but he seemed to at least accept the answer. There was additional talk about steroids and how they had worked, how much the doctor had put me on, the symptoms, the pain relief, the way I felt, and more. He decided based on what I had said to put me on a different type of steroid. I was on prednisone and methylprednisolone, but he was putting me on hydrocortisone, which was weaker in one respect but which also more closely resembls what the body naturally makes, of which I was deficient.

Secondary adrenal insufficiency, most likely due to damage to the pituitary gland in the brain. The damage to the pituitary gland was suspected to have happened when I was hospitalized in 2008. It was either the sepsis that did it, which is not uncommon though it is considered a rare complication, or else the Zyvox medication I took did it. We can’t currently prove it was the Zyvox though. It was a new medication when I took it back in 2008, and so the ultimate side effects are not yet known. The thing is, even if it was the Zyvox, there may be nothing I can do about it, since I had to take it.

You see, back in 2008, the sepsis, what some might call septicemia or septic shock, was so severe that I was treated as an emergency admit to the hospital, and they were working on me when I was admitted like they might someone who came into the hospital ER on their deathbed. I didn’t even have time to breathe or think before they were putting in a central line and pumping me up with stuff… and Zyvox was one of those things that was a last line of defense antibiotic. I either used it or I died. Given the choice, I guess living is a nice thing, right?

So the diagnosis is confirmed. I have adrenal insufficiency… and it’s possible sometimes it’s high too, fluctuating, which is part of why it was so hard to finally nail down. Also, it’s really quite rare to be caused by the pituitary, so most doctors wouldn’t think to go to it, thus why it was so hard to finally get someone to look for it. The reason for it is still not known, but that much is confirmed. I have a lab report I can actually look at, point at it and say, “There, this is it.”

I needed that. I needed something that showed me that all I’m feeling is not in my head. Well, actually it IS in my head, but you know what I mean….LOL

The good news is I know what’s wrong with me now, but the bad news is, we don’t know for certain what’s causing it. So next week, I have to go to a lab and take a stimulation test. They will inject me with a stimulating agent and then draw blood at baseline, fifteen, thirty and sixty minutes. This will tell them if the adrenal insufficiency is from the adrenals or the pituitary. Depending on which one it is, the treatment will be altered accordingly.

So he has me doing the text next week, then I start hydrocortisone, twice per day (to mimic the diurnal cycle) and then I retest my free cortisol levels again in eight weeks. My thyroid meds are also going to be adjusted, since as the insufficiency is treated, the thyroid might work better.

It’s common for people with this condition to be anorexic. Not the ‘nervosa’ type of anorexia, but the type where the body is starving itself by not processing food properly to get nutrition or energy from it. He told me, “We’re going to want you to gain some weight…”

Lynn and I started to laugh. The last thing I need is more weight. LOL Ah, funny. But he made sense when he talked about how I might have gained some weight due to fat increase and water/fluid retention problems, but while I was gaining fat weight, I was losing muscle mass, and that explains the weakness and the muscle aches and pains. I was probably the world’s only fat anorexic. Can you imagine? Literally, my body was ‘eating’ itself for fuel and energy.

Anyway, he said that by gaining back some muscle weight, it will actually help to increase my metabolism, help stop the muscle aches and pains, and more. He said my lab results explained everything I had told him in our first visit I was complaining about or suffering from. Everything. With proper treatment, he said it should all improve.

He did, however, tell me it will take time. Much like a diabetic needs insulin to break down glucose, the body needs cortisol for so many things, including energy, stress management (both emotional and physical stress), pain-reduction, and more. The body has changing demands on the amount of cortisol it needs. Unlike diabetes, though, where a person can test their blood sugar and monitor their blood glucose and adjust their medication accordingly, there is no simple at-home test to check for your cortisol reaction levels. So treating this condition requires a lot of trial and error until we learn what the normal cycle of the body is, and get it regulated to that cycle.

In the meantime, it means I’ll feel better just by starting treatment, but I won’t feel ‘good’ right away, and it might take some trial and error. I can live with that.

The hard part this week is that in order to do the stimulation testing next week, I’ve had to completely come off the steroids, which means I am currently in a lot… and I mean, a LOT of pain. I have literally done nothing but sleep for the last four days, waking only long enough to get something to drink and then going back to sleep. I’m groggy, achy and in pain, but I’m happy to know it will all be over soon. Next week, after the test, I’ll start on new meds, and I should feel better almost instantly, and then it will just get better and better as the body adjusts to having the right meds.

Anyway… I need to get some food in me. I haven’t eaten much the last few days, and that’s not good. I just wanted to share my news, my good news, so you all knew how happy I am about it! I wish I wasn’t feeling so lousy – it’s literally taken me two ½ days to write this blog post! – but I know there’s an end in sight… I will feel better. Not fixable, but treatable, and I will feel better. There’s a lot more to it I’ll tell you guys about later when I have more energy, about how it’s treated, the major, and I mean major, lifestyle changes I must make, the fact I’ll have to wear an ID bracelet or necklace and carry stuff with me in case I’m injured or in an accident, etc. But for now, we’re just going to be happy that I have a diagnosis and that there IS a treatment to help me.

Thanks for reading if you made it this far. I’m not sure I even read all I just wrote!

Love you all.

Love and stuff,
Michy

Related Posts Plugin for WordPress, Blogger...

Comments

comments

12 comments to The World's Only Fat Anorexic? Really?

  • Pamela  says:

    Michy, I’m so happy you finally have an answer and now can have a plan of action. I have a cousin who suffers from the same thing and she is living an almost normal life now. Hope it gets better from here on out.

  • Cindy  says:

    Michy!!! I am so happy for you. I know the not knowing, the being dismissed was mentally and physically exhausting as well as emotionally devastating. WooHoo for a real diagnosis and for tests that make treatment possible. I know it will be a battle, but finally the end is in sight!

  • Michy  says:

    Thanks, Pamela.

    He said that I will likely have to feel bad for a little longer while we figure out the best way to treat it, but that once we found it, I could have an almost normal life–have to cut back on stress and have to get a very regular eating, sleeping, waking pattern, no alcohol, no caffeine, that sort of thing, and be careful with getting scared, worn out, over-exercising and that type of thing, but for the most part, I’ll be able to do normal things and not have pain and swelling anymore.

    I’m very optimistic!

  • Michy  says:

    Cindy! Thanks! Yeah, we were actually laughing and almost cheering when we left the doc’s office. I think I was the only patient he’s ever seen who was HAPPY to get ‘bad news’…LOL Strange how perception changes things, huh?

    I’m very pleased… ready to feel better, now!

  • Beth  says:

    You are the second person I know with this diagnosis. I hope you’ll find it encouraging to know that the first is now feeling MUCH better–normal energy levels, normal sleep patterns, normal appetite, steady nervous system response, and no pain (except for the normal kind of pain when she overdoes it exercising (which she is delighted to even have the energy to do!).

    She has had to overhaul her life, and it DID take time to get where she is , but she’s healthy, something that she said she thought was gone forever. In the beginning, she had to eat at regimented times, whether or not she was hungry and whether or not she felt she could even keep any food in. Every meal had protein, none had refined carbs or gluten. She took a number of nutritional supplements, doctor supervised and some at therapeutic dosages. She had to INCREASE her salt intake, and in the beginning, balance rest and very gentle exercise carefully. More robust activity came in time, but not at first.

    Like I said, she is now feeling great. She still does not eat junk–she even says that she rarely even wants the stuff that used to make her drool. She revamped her life to reduce her stress level, which I think was the hardest thing for her. She was Type A all the way. She’s still taking several supplements, but just a fistful and all are now bought over-the-counter. She’s kind of a low-carb eater, but not to the extreme.

    She says that the biggest benefits to her are that she can now plan activities in advance without wondering if she’ll need to cancel because she’s when the time comes, she’s not up to it (this used to happen all the time) and she no longer worries that she will spend the rest of her life sick.

    So yay! There’s a silver lining–and you’ve found it!

  • Lisa (lablady)  says:

    Michy, As Pamela, I am thrilled that you have been, for the most part, diagnosed! One last test for exact results and you’ll be able to feel better very soon. I’m so happy for you! What a relief, huh? I’m sending lots of positive, healing thoughts your way. 🙂 ~ Lisa

  • Michy  says:

    Beth, that’s the part I haven’t gone into here, but you’re right. It’s going to require a complete lifestyle change. I will have to manage sleep schedules, food, etc. That was the other thing, eating multiple small meals throughout the day, and the meals had to have a certain balance thing to them and all this.

    I haven’t gotten into reading all the requirements yet. Right now, forcing myself to eat has been difficult… my stomach is not happy and doesn’t want food, so yeah.

    Anyway, all the things you said are exactly what I have ahead of me, including reducing stress… I came home and told my son, “Sorry, kiddo.. you’re going to have to move out. You’re too stressful.” He laughed and then looked worried and I died laughing…LOL

    But I’m still very optimistic. I can do these lifestyle changes – I know I can – and that means I will feel better!

  • Francesca  says:

    While wasting a moment on Facebook this morning, a FB friend posted a link to your blog.

    I just about yelled out loud…in a crowded room!

    I have been describing myself as the world’s fattest anorexic for years, as I barely eat and top the scales over 270.

    Six years ago my chiropractor identified I had a stress disorder of some sort, and we worked on varying solutions – cutting out caffeine, trying to reduce stress, going to the gym despite having little or no energy.

    Three years ago a naturopath diagnosed me with adrenal failure, and put me on a pile of supplements, which I couldn’t afford, and told me to reduce stress in my life. Yeah, great advice for a single mom…

    A friend who was looking to build her personal trainer business offered to help me for free (in exchange for testimonial) and she realized I was living on less than 800 calories a day – in an effort to lose weight. She put up to 1800. Totally freaked me out!

    I find it’s true, when I go on a conference and I eat meals 3 times a day with a protein bar in the afternoon (because dinner tends to be after 6 and I’m dying) I lose weight. I also have a dairy and wheat allergy so my food tends to be healthier than normal conference food.

    So to find your blog, so titled after my own life, gives me hope!

  • Rissa Watkins  says:

    Makes sense- remember how good you felt when you were on steroids? I hope they are able to make you feel better. So happy you got a good doc and have a diagnosis.

  • Svenja  says:

    Wow, that’s a long diagnosis! It makes a lot of sense though. I am very happy for you that you finally have some answers, and that those answers point to a solution! Sure, it might take a while to get there, but you will. I am absolutely sure of that. All the best! xx

  • Anonymous  says:

    This weblog appears to obtain a large ammount of visitors. How will you get visitors to it? It offers a nice individual twist on things. I guess having something authentic or substantial to state is an essential factor.

  • Marguerite  says:

    I see a lot of interesting posts on your website. You have to spend a lot of time writing, i know
    how to save you a lot of time, there is a tool that creates high quality, google friendly articles in couple of minutes, just type in google
    – k2 unlimited content

Leave a reply

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <s> <strike> <strong>