I do not have celiac disease. I had no transglutaminase anti-bodies in my blood.
I had my iron infusion this morning. I hope to be feeling better soon.
I still have to have a colonoscopy and upper endoscopy with a biopsy of the small intestine/duodenum.
I will have another iron infusion in 2 weeks and my blood will be re-tested after that.
The doctor said we may never find the exact cause, and perhaps my double-red blood cell donation in late April was the trigger for all of this.
He expects that I will be under his care for a year or so. It will take that long to get to a stable place and monitor my iron stability for a while.
And, we may still find a cause somewhere. He said if we find a cause, it will probably be the duodenum biopsy that gives us the answer.
I just want to get back to working out. The best news of the day was that my hemoglobin has improved from 9.3 to 10. This is probably just enough of a change that I was able to work out a little bit last night. I'm looking forward to a normal level again, but any improvement is nice to see.
Thursday, July 30, 2015
Monday, July 27, 2015
Zeroing in
I saw a hematologist on Friday morning. He asked hundreds of questions it seemed. He pored laboriously through my prior labs. He put me on a table and found every lymph node in my body. I'm still sore from that part of the exam. He even confirmed that I'm developing a right side inguinal hernia, which I had suspected earlier in the year after I felt some mild pain after heavy squatting. And, he prescribed a lot more tests. Because I hadn't had any food yet that day, he decided to add an iron absorption test, which requires that the patient be fasting.
Basically, they measured my iron by taking blood. They then had be drink a large quantity of iron in a liquid form, and come back two hours later to see how well my gut was absorbing the iron. This was apparently the only test result that came back on Friday and I got a long phone message from the doctor.
He told me that my starting iron level should have been 35-100 or so (I think this is micro-grams per deciliter, but the units are kind of irrelevant here). But, my starting level was 16. So, despite an iron storage protein level indicating that I am storing plenty of iron, my blood is clearly low in iron.
He also told me that he expected the big dose of iron to push my level to the 100-150 range. Instead, it went to 18 - barely budging.
This means that something is going on in my small intestine, preventing me from absorbing dietary iron.
So, I have to go to the clinic this week and get an intravenous iron infusion. And, I'll get more results today.
Based on what I've read and one of the tests the doctor performed on Friday, I'm guessing that we will find that the cause of the anemia is that I've developed celiac disease, which seems to be a common reason for this problem.
If that is the case, I have to start imagining a life without pizza, bread, and beer and a whole lot of other things that are quite tasty (cookies, for example).
But, I'm getting ahead of myself here, and I need to let the doctor do his work. I am very happy about the iron infusion. It will be nice to finally receive some treatment rather than just tests.
I've obviously stopped taking the iron pills, since my body clearly cannot absorb it anyway.
Basically, they measured my iron by taking blood. They then had be drink a large quantity of iron in a liquid form, and come back two hours later to see how well my gut was absorbing the iron. This was apparently the only test result that came back on Friday and I got a long phone message from the doctor.
He told me that my starting iron level should have been 35-100 or so (I think this is micro-grams per deciliter, but the units are kind of irrelevant here). But, my starting level was 16. So, despite an iron storage protein level indicating that I am storing plenty of iron, my blood is clearly low in iron.
He also told me that he expected the big dose of iron to push my level to the 100-150 range. Instead, it went to 18 - barely budging.
This means that something is going on in my small intestine, preventing me from absorbing dietary iron.
So, I have to go to the clinic this week and get an intravenous iron infusion. And, I'll get more results today.
Based on what I've read and one of the tests the doctor performed on Friday, I'm guessing that we will find that the cause of the anemia is that I've developed celiac disease, which seems to be a common reason for this problem.
If that is the case, I have to start imagining a life without pizza, bread, and beer and a whole lot of other things that are quite tasty (cookies, for example).
But, I'm getting ahead of myself here, and I need to let the doctor do his work. I am very happy about the iron infusion. It will be nice to finally receive some treatment rather than just tests.
I've obviously stopped taking the iron pills, since my body clearly cannot absorb it anyway.
Thursday, July 23, 2015
A sudden turnaround
Last Saturday, I felt terrible and basically napped most of the day. My wife and I had gone to visit her parents, and I had to apologize for how I felt and not being able to stay awake. I did manage to sit down and eat dinner that night though, which I haven't been able to do much recently. Well, I usually eat something, but it's rarely the meal that's been prepared. I think I ate a salad for the first time in a month. This time of year, I am usually eating multiple salads every day, but my appetite has been so messed up, that I have just stayed away from most vegetables for the past month.
Sunday, I felt a little better, but still rested a lot to make sure I'd get through the Neil Young show. Monday, despite a short night of sleep after the show, I felt the best I've felt in a month. But, it was just one good day, and I've had lots of decent days in the past couple months, only to feel terrible the next day.
I even thought about doing CrossFit on Monday, but my wife was exhausted and just wanted to go home after work. I didn't want to try a workout enough to argue with her.
Tuesday, I felt pretty good again. Two days in a row! The only downside is that it was a hot and humid day. I walked for about 1.5 miles at lunch and I was tired after that. My wife went to CrossFit that night, but I didn't want to try a workout in the heat.
Yesterday (Wednesday), I felt decent again. This was really encouraging - three consecutive days of feeling decent. So, I decided to try CrossFit.
The warm-up involved some shoulder mobility work, jumping air squats and 2x100 run. I was amazed that I could breathe OK on the runs. That alone was a huge change. A month ago, despite losing body weight, I was out of breath on even the shortest, slowest runs. That seems to have changed.
The strength workout was 10 rounds of 5 strict presses and 10-20 sit-ups. I opted for only 7 sit-ups and I kept the weights light on the strict presses - 65#-80#. A few months ago, I would have done this workout at 95#-110#. But, I want to ease back in and not get sick again. As it was, 4 sets at 80# was pretty much my limit.
After the lifting portion of the workout, we had a 10 minute workout. My goal was max reps of 1) 10 ball slams (20# - very light for me) and 2) 50 single-under rope jumps. I got six rounds plus 10 more ball slams. I had gotten tired during the workout, but I did OK.
Tonight, we get to choose our own movements, and I plan to do some rowing, pull-ups, push-ups, and deadlifts - all at an easy level.
And then, I can hopefully go to the hematologist tomorrow and tell him that things seem to be improving. I'd still like to understand what caused this, but a permanent recovery is more important to me than knowing why it happened.
Sunday, I felt a little better, but still rested a lot to make sure I'd get through the Neil Young show. Monday, despite a short night of sleep after the show, I felt the best I've felt in a month. But, it was just one good day, and I've had lots of decent days in the past couple months, only to feel terrible the next day.
I even thought about doing CrossFit on Monday, but my wife was exhausted and just wanted to go home after work. I didn't want to try a workout enough to argue with her.
Tuesday, I felt pretty good again. Two days in a row! The only downside is that it was a hot and humid day. I walked for about 1.5 miles at lunch and I was tired after that. My wife went to CrossFit that night, but I didn't want to try a workout in the heat.
Yesterday (Wednesday), I felt decent again. This was really encouraging - three consecutive days of feeling decent. So, I decided to try CrossFit.
The warm-up involved some shoulder mobility work, jumping air squats and 2x100 run. I was amazed that I could breathe OK on the runs. That alone was a huge change. A month ago, despite losing body weight, I was out of breath on even the shortest, slowest runs. That seems to have changed.
The strength workout was 10 rounds of 5 strict presses and 10-20 sit-ups. I opted for only 7 sit-ups and I kept the weights light on the strict presses - 65#-80#. A few months ago, I would have done this workout at 95#-110#. But, I want to ease back in and not get sick again. As it was, 4 sets at 80# was pretty much my limit.
After the lifting portion of the workout, we had a 10 minute workout. My goal was max reps of 1) 10 ball slams (20# - very light for me) and 2) 50 single-under rope jumps. I got six rounds plus 10 more ball slams. I had gotten tired during the workout, but I did OK.
Tonight, we get to choose our own movements, and I plan to do some rowing, pull-ups, push-ups, and deadlifts - all at an easy level.
And then, I can hopefully go to the hematologist tomorrow and tell him that things seem to be improving. I'd still like to understand what caused this, but a permanent recovery is more important to me than knowing why it happened.
Monday, July 20, 2015
Beyond Frustrated
Thursday around noon, I got a call from the hospital where I get my primary health care. They needed me to come in the next day to see a doctor. It was important and related to the lab tests I'd had the previous Friday.
I agreed to be there, but the tone of voice and urgency put me on edge. They made it sound like something new had been found that required immediate intervention. So, for 27 hours, I worried. A lot.
At the appointment, which was with a doctor I have worked with professionally, but whom I'd never seen as a patient, I was confused. After the preliminaries were out of the way, the doctor sat down and said "So, what can I do for you?" I told him that the hospital had scheduled the appointment and I assumed he knew what it was about. I told him about the anemia diagnosis and assumed the visit was related.
He said it sounded like I needed some lab work. I told him that had been done a week ago. Quickly, he pulled up my lab results and we looked at them together. The one odd thing is that my iron levels are fine. I am right near the top end of the normal range. So, he said while I am very anemic (hemoglobin of 9.3, with a reference range of 13.5-17.5, and my last test in April was in the high 17's), it didn't appear to be iron-deficiency anemia. Nonetheless, he didn't want to contradict another provider, so he wants me to continue with the iron supplements. To be honest, that seems dangerous to me.
However, unlike my former primary care doc, he recognized that this was out of his league, and he referred me to a hematologist. I see that doctor this coming Friday.
I first noted (in my training log) that I was feeling bad on May 4th. I've gradually gotten worse by then, a very steady down slope. I've lost 30 pounds. In early June, my primary care doc didn't want to do any blood work, although a very basic blood panel would have shown the anemia. Finally, in July, he had to do the blood work. I can only assume my hemoglobin has been dropping this entire time and it may still be dropping. So, eleven weeks after this all started, I still don't have a complete diagnosis, I have no reason to believe it's not getting worse, and I've had no treatment at all.
My hemoglobin level is at a level where the anemia is considered moderate. If I drop to 8, the rules all change, as I would cross into the "severe" level. Hopefully, I won't have to worry about that, but it would be nice to have a full diagnosis and some sort of progress towards recovery.
Yesterday, my wife and I saw Neil Young here in Vermont. It was a great show - some songs from his new album and a whole lot of classics. He started out acoustic and solo, and after 4 songs, his band joined in. He stayed acoustic until about the mid-point of the show and then switched to an electric guitar. It was his first show in Vermont since he played as part of a group in 1965. That band played one night at a nightclub near Killington and was not invited to return. This return, almost 50 years later, was very successful.
The only downside was being tired. I essentially napped all day just so I'd have energy to get through the show.
I might have written this before, but I honestly feel like I aged 20 years in 2 weeks and it's not getting better. When Neil sang "Old Man" last night, I was standing there, feeling a lot like an old man.
I agreed to be there, but the tone of voice and urgency put me on edge. They made it sound like something new had been found that required immediate intervention. So, for 27 hours, I worried. A lot.
At the appointment, which was with a doctor I have worked with professionally, but whom I'd never seen as a patient, I was confused. After the preliminaries were out of the way, the doctor sat down and said "So, what can I do for you?" I told him that the hospital had scheduled the appointment and I assumed he knew what it was about. I told him about the anemia diagnosis and assumed the visit was related.
He said it sounded like I needed some lab work. I told him that had been done a week ago. Quickly, he pulled up my lab results and we looked at them together. The one odd thing is that my iron levels are fine. I am right near the top end of the normal range. So, he said while I am very anemic (hemoglobin of 9.3, with a reference range of 13.5-17.5, and my last test in April was in the high 17's), it didn't appear to be iron-deficiency anemia. Nonetheless, he didn't want to contradict another provider, so he wants me to continue with the iron supplements. To be honest, that seems dangerous to me.
However, unlike my former primary care doc, he recognized that this was out of his league, and he referred me to a hematologist. I see that doctor this coming Friday.
I first noted (in my training log) that I was feeling bad on May 4th. I've gradually gotten worse by then, a very steady down slope. I've lost 30 pounds. In early June, my primary care doc didn't want to do any blood work, although a very basic blood panel would have shown the anemia. Finally, in July, he had to do the blood work. I can only assume my hemoglobin has been dropping this entire time and it may still be dropping. So, eleven weeks after this all started, I still don't have a complete diagnosis, I have no reason to believe it's not getting worse, and I've had no treatment at all.
My hemoglobin level is at a level where the anemia is considered moderate. If I drop to 8, the rules all change, as I would cross into the "severe" level. Hopefully, I won't have to worry about that, but it would be nice to have a full diagnosis and some sort of progress towards recovery.
Yesterday, my wife and I saw Neil Young here in Vermont. It was a great show - some songs from his new album and a whole lot of classics. He started out acoustic and solo, and after 4 songs, his band joined in. He stayed acoustic until about the mid-point of the show and then switched to an electric guitar. It was his first show in Vermont since he played as part of a group in 1965. That band played one night at a nightclub near Killington and was not invited to return. This return, almost 50 years later, was very successful.
The only downside was being tired. I essentially napped all day just so I'd have energy to get through the show.
I might have written this before, but I honestly feel like I aged 20 years in 2 weeks and it's not getting better. When Neil sang "Old Man" last night, I was standing there, feeling a lot like an old man.
Tuesday, July 14, 2015
A partial answer - at least
Iron Deficiency Anemia.
That's what my doctor told me on the phone yesterday after looking at my lab results. I had told him in the office on Friday that I thought there was no chance that I had anemia, because my hemoglobin levels were on the high end of normal before I gave blood last time.
As soon as he told me what was causing my symptoms, I wanted to know why, and here the conversation turned somber. Iron Deficiency Anemia in men is rare and it is usually associated with internal bleeding. That internal bleeding is often caused by serious upper or lower GI issues, including gastric cancers and colon cancer, along with ulcers and lesions and other less severe causes. But, it's rare in men - about 2% of the population. My doctor told me I needed a colonoscopy very soon.
I mentioned to my doctor that I had done a double red blood cell donation in late April (4/21), and asked if it was possibly related to what is going on. I told him that I haven't had one good workout since I donated blood, and the other symptoms started to show up about 2 weeks later.
He said that I should have been able to recover from the donation, but with all the stress in my life, and trying to push hard at the gym, maybe my body just couldn't recover. So, he told me to hold off on the colonoscopy. I told him that I'd prefer to get it done anyway, and I'd schedule it on my own. While it's entirely possible that the blood cell donation triggered this, it still seems unlikely that I'm the one exception to the rule about the cause of iron deficiency anemia in men. So, it seems smart to get the colonoscopy done. If that is clean, maybe I'll need an upper GI too.
So, I'm taking an iron supplement. I should be able to work out within a week or two if things go well. If I don't get better, that's another sign that there is some internal bleeding occurring somewhere.
The other thing that alarmed the doctor was a high C-Reactive Protein result. This test should have a result less than 1. I've heard of ultra-runners having levels over 20,000 after a 100 miler, leading doctors to think they'd had a heart attack.
CRP is a measure of inflammation in the body, but it's non-specific. It doesn't tell you where the problem is. At levels above 3, it is associated with higher cardiovascular health risks. My value was 13.
So, I'm going to take iron for 2 weeks. Retest iron levels, hemoglobin levels, reticulocyte count, and CRP, along with a complete blood count.
If the numbers all improve, we might have found the solution. If not, there's more digging to be done. But, I think it's important here to not just treat the problem, but to also find the underlying cause of what's going on.
I'm scheduled to do another double red cell donation on 8/11. My doctor suggested I cancel. He said my hemoglobin is so low that they wouldn't take my blood anyway.
That's what my doctor told me on the phone yesterday after looking at my lab results. I had told him in the office on Friday that I thought there was no chance that I had anemia, because my hemoglobin levels were on the high end of normal before I gave blood last time.
As soon as he told me what was causing my symptoms, I wanted to know why, and here the conversation turned somber. Iron Deficiency Anemia in men is rare and it is usually associated with internal bleeding. That internal bleeding is often caused by serious upper or lower GI issues, including gastric cancers and colon cancer, along with ulcers and lesions and other less severe causes. But, it's rare in men - about 2% of the population. My doctor told me I needed a colonoscopy very soon.
I mentioned to my doctor that I had done a double red blood cell donation in late April (4/21), and asked if it was possibly related to what is going on. I told him that I haven't had one good workout since I donated blood, and the other symptoms started to show up about 2 weeks later.
He said that I should have been able to recover from the donation, but with all the stress in my life, and trying to push hard at the gym, maybe my body just couldn't recover. So, he told me to hold off on the colonoscopy. I told him that I'd prefer to get it done anyway, and I'd schedule it on my own. While it's entirely possible that the blood cell donation triggered this, it still seems unlikely that I'm the one exception to the rule about the cause of iron deficiency anemia in men. So, it seems smart to get the colonoscopy done. If that is clean, maybe I'll need an upper GI too.
So, I'm taking an iron supplement. I should be able to work out within a week or two if things go well. If I don't get better, that's another sign that there is some internal bleeding occurring somewhere.
The other thing that alarmed the doctor was a high C-Reactive Protein result. This test should have a result less than 1. I've heard of ultra-runners having levels over 20,000 after a 100 miler, leading doctors to think they'd had a heart attack.
CRP is a measure of inflammation in the body, but it's non-specific. It doesn't tell you where the problem is. At levels above 3, it is associated with higher cardiovascular health risks. My value was 13.
So, I'm going to take iron for 2 weeks. Retest iron levels, hemoglobin levels, reticulocyte count, and CRP, along with a complete blood count.
If the numbers all improve, we might have found the solution. If not, there's more digging to be done. But, I think it's important here to not just treat the problem, but to also find the underlying cause of what's going on.
I'm scheduled to do another double red cell donation on 8/11. My doctor suggested I cancel. He said my hemoglobin is so low that they wouldn't take my blood anyway.
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