I got my bone marrow biopsy results back the other day from the Mysterious Hematologist. It appears he has ruled out a lot of the diseases he wouldn’t tell me about. Not only that, but he’s pretty sure he now knows what is causing my freakishly large red blood cells. Not only THAT, but he told me what it is.
[insert drum roll here]
Cold Agglutinin Disease (aka Cold Antibody Disease or Cold Antibody Hemolytic Anemia).
It’s an autoimmune disorder. My body turns on itself when it’s cold, and starts killing off my red blood cells. It’s idiopathic, which means there’s no known cause. There’s also no known cure, and the only treatment is to move to the Canary Islands.
Can you believe it? I live in the second coldest capital city in the world, and I’m allergic to cold weather.
I also have no iron stores in my bone marrow and very little iron in my blood, so I have to take mega-doses of iron for a year.
All of this goes a long way towards explaining why I’m always cold, why I can barely function at work after 2:00 pm, and why I fall asleep on buses and in waiting rooms and especially during meetings. I always thought it was because I only get about 6.5 hours of sleep each night. But apparently I’m not not only sleep-deprived, I’m also oxygen-starved. (All things considered, I’m doing very well, don’t you think? By rights I should be comatose.)
The good news is that I’m surrounded at work by women with hot flashes who are always too hot, compared to only a couple of us who are always too cold. Even though I’m in the minority, I think they’ll compromise more on the temperature settings now: my comfort has become a health and safety issue. If it gets too cold in the office I can just start moaning pitifully from my cubicle about how painful it is when my blood cells die, and they’ll rush to turn up the thermostat. (Either that or they’ll try to finish me off by stealing my sweaters and buying me iced cappucinos. Time will tell.)
Anyway, it looks like I’ll be sticking around for awhile. 😉
[…] The Mysterious Hematologist and the tentative… The Mysterious Hematologist and the tentative diagnosis May 10th 2007 Posted to F … Antibody Disease or Cold Antibody Hemolytic Anemia). It s an autoimmune disorder. My body turnsPosted in knitnut.net ( 227 links from 107 sites) by soozoom […]
Thank Goodness. Now you can go to NYC with no worries.
Great news that you have a diagnosis, and it isn’t anything malignant.
Cold Agglutinin Disease = solid gold excuse for knitting!
Perhaps you could offer to keep the office temperature at the chilly status quo in exchange for yarn money?
I hear cashmere is very, very warm.
Hot flash meet news flash at the office.
It’s good that there’s a diagnosis. This sounds like a good reason to try out Holtz spa with they oxygen bar.
Try knitting an extremely fine and soft wool camisole… a nice challenge And you can make yourself a kind of underdesk lower body cocoon, to slip into whenever you sit down. Little things will make a difference. Wear only mitts in the winter and never gloves. And they have to be windproof as well.
With the iron supplement, you want a very high fibre diet, lots of fluid and take your iron with an acidic meal, OJ, tomato, lemonade etc. E-mail me direct if you want to.
What a fascinating affliction. You could also put a space heater under your desk. I worked in an office a few years ago where that was necessary for everyone. I suppose you’ll just have to take sever tropical vacations per year, you know, for your health
You guys really know how to find the silver lining, don’t you? Cashmere, spas, camisoles, cocoons, tropical vacations…this disease is going to catapult me right into the lap of luxury. 😉
Hi – glad to hear you have a diagnosis etc. Be careful of the iron supplements. Try to take the green ones (ferrous gluconate). I am taking iron supplements to help combat hair loss and started out on the red ones (ferrous sulphate). I completely forgot a sensitivity I have to red dye which causes me to develop a terrible acne-like condition which is only treatable with antibiotics – lots of them. Had a battle with my GP (don’t get me started) to get antibiotics, which she would not give me – got them from the good old clinic – no questions asked. Anyways – good luck – hope all works out.
Wow!
We certainly seem to like collecting strange autoimmune disorders in this family.
I have to say, yours is pretty cool – no pun intended.
http://www.nordicwoollens.com/c188942.2.html – in case the idea of knitting longjohns seems like too much work.
Are they giving you shots of iron?
love you!
Kerr
Linda Anne, thanks for the tip – I think I’m taking the green ones and so far there have been no bad side effects. In a couple of days I’ll start doubling the dose and next week I’ll be tripling it, so we’ll see.
Kerr, what other strange autoimmune disorders do we have??
I was reading the other day that people with my disorder are supposed to wear mittens when we take things out of the fridge or freezer, and we’re only supposed to drink warm water!
I have polycystic ovarian syndrome (my body attacks my ovaries), a transient type of Graves disease (my body attacks my thyroid hormone signals so my body produces too much thyroid hormone), Vitiligo (my body attacks my pigment cells and kills them off when I’m stressed – its what Michael Jackson claims he has) and I’m ANA “positive” and the level fluctuates which is a sign that I have some more serious autoimmune things going on but nothing really conclusive – which is good, I’d really rather not have lupus!
Pregnancy and nursing induced ammenoreha (not ovulating or getting my period) seem to be a really good immune suppressant for me but when I regain fertility I get slapped with something new after each pregnancy.
Holy mackerel Kerry. I always knew you were weirder than me, I just had no idea how MUCH weirder. I’m also RH negative, so my immune system perceives fetuses as foreign invaders. I guess yours doesn’t do that, eh?
Oh yeah, hard to forget about that one, yup I’m O- and both the fathers of my kids are Rh+ so I’ve got the “foreign invader symbiote” thing to worry about too.
I still think yours is wierder, I mean, I may go gray and have white patches of skin in strange places, have a racing heart sometimes, and only get my period once or twice a year, but I won’t need to wear mitten strings about in the house!
You’re going to have the BEST collection of mitts soon!
Guess you’re going to have to develop a taste for room temperature Guinness now huh?
One other thing that I recently found out about – anyone who is ANA positive should be careful about which antibiotics they take. When I go to my rheumatologist she requires a list of all current medications. On one visit I listed an antibiotic that I had been prescribed at a clinic for a sinus infection. She freaked out because it can pparently trigger lupus in those with elevated ANA or a family history of lupus (which I have – an aunt died from complications related to lupus). Whenever I need antibiotics, I now clear them through my rheumatologist, as not all GP’s are aware of this.
Zoiks! Good that at least you know. And I love all the positive ssuggestions your other readers have. Cashmere indeed.
Hi Julia! Yup, those are excellent suggestions. We should form the Silver Lining of Rare Diseases Club.
Kerr and Linda Anne: what’s ANA?
Zoom – ANA stands for “Antinuclear Antibodies”. They are detected through a blood test and are present when the body is fighting conditions such as infections, autoimmune conditions (lupus, arthritis etc.) or tumors. In my case it is osteoarthritis.
Linda Anne, I love the ominous sounding name. If I had it, I’d definitely call it Antinuclear Antibodies instead of ANA.
Please go to our website listed above to learn more about CAD and then please contact me. We’ll be happy to list your story and your e-mail so you can correspond with others and vice versa.
I’m not a doctor but I know that
tons of iron may not be the correct meds for you. CAD is usually not caused by iron deficiency. Folic Acid is the usual way to go. Betty
Betty, thanks for stopping by. I was on your website the same day I got my diagnosis (that’s how I knew about the mittens). I didn’t mean to imply that my doc was using iron to treat the CAD – only that I’m also iron-deficient, so he’s treating the iron-deficiency with iron and not treating the CAD (or at least not yet) with anything.
weird. I know this is a hackneyed answer (and very late), but take this to a naturopath! Sounds like the med profession doesn’t have a clue on this one.
[…] Remember when the Mysterious Hematologist finally concluded that my immature red blood cells were being caused by Cold Agglutinin Disease (aka Cold Antibody Hemolytic Anemaia)? I assumed that would be the end of all the testing, but I was wrong. Today I went for a CT Scan so he could see if there was some underlying cause for the Cold Agglutinin Disease. […]
[…] The mysterious hematologist says I’m becoming more normal. […]
[…] This morning I considered not walking to work. It was minus twenty-eight degrees with the wind chill and it takes an hour and twenty minutes to walk to work. The combination just didn’t sound all that appealing. Besides, I do have that rare autoimmune disease that is triggered by getting too cold. And it’s not like I’ve taken some kind of vow to always walk to work. Today would have been a reasonable day to make an exception. […]
seriously, this blog is good . I think im gonna stick around and read about 6 more of your posts. Later