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Well.

I just got diagnosed over the phone with pernicious anemia.

Basically that means my body can't absorb B12 from food anymore. So, I have to get B12 shots and/or take oral megadoses of B12 for the rest of my life, because symptoms of serious B12 deficiency are straight up terrible - everything from exhaustion to dangerously enlarged liver - painful joints, nerve damage and "impaired cognition," and heart arrhythmia, weakened bones...generally speaking, though, as long as you get your shots you're fine. "Pernicious" means deadly, because this used to be a death sentence, before it was so easy to supplement the B12.

Causes can be autoimmune, wherein your immune system is attacking a protein your stomach normally makes called intrinsic factor, which enables your digestive system to process B12. Eventually your stomach lining gives up even trying to make more intrinsic factor and you just don't have any. And I do have inflammation, which points to autoimmune issues.

It can also be because you've had part of your small intestine removed, which I obviously have.

It is scary as hell to think that I've been falling down stairs and unable to move myself around and CONFUSED all the time, because of this. My numb, tingling, weak hands... I am trying to just console myself that lifelong B12 shots are wildly less terrible than the colostomy bag I was warned I might need (in 2007, pre-op). And, pernicious anemia is not degenerative as long as it's treated, so obviously that is a much better option than RA, which I was very afraid of...

People with pernicious anemia are about 3 times more likely than the general population to develop stomach cancer. The normal odds are very very good/small, though, so that is still "only" about 4 out of every 100 people who have pernicious anemia that are getting it. Except that being hispanic also doubles (or more) your risk factor for stomach cancer. And that is like, basically the least survivable cancer, since it's almost impossible to catch early. NO WORRIES THERE O_O

And so I am trying to console myself that I really could have died in the ICU, and I didn't. Instead I have somewhat increased odds of one day developing a rare cancer. WAY BETTER, right? I mean I'll probably die on a Miami highway before that could ever happen.

Pernicious anemia is also called megaloblastic anemia, because what it really is, is an inability by your body to produce enough healthy red blood cells, since B12 is used in the production of red blood cells. Instead you have these huge, too-few red blood cells. Which effects you systemically, until you start supplementing.

Apparently there is irreversible and reversible damage happening leading up to diagnosis, while your blood is all wack - brain, nerve, organ, bone, TEETH (I've gotten 10 of my 15 fillings done so far), etc...and this varies for everyone. The earlier you catch it the better, though, as far as what goes back to normal, and it seems from my reading that most people are way worse off than I am before they do figure out this is what's going on.

I would like to think this is related to surgery partially because otherwise it is very hereditary; one of the things on the list of things to do is tell my kids and siblings all about it, since any of them may also have or develop it.

Five minutes of crying, half an hour on the phone with my sister and some distractions later, I am ok with this situation. There was still some part of me hoping that the potentially subjective things I was suffering from could add up to be, you know...nothing. Something that passed unexplained, or was at least curable. But (like Laura said, and is obvious...) things have been way TOO wrong for that. So! This it is :p It means doctors appointments forever and explaining this to people over and over and over, and all in all it's not so bad. It shouldn't be hard to get my disability allowance for last semester when I explain WHY I was a wreck with a firm diagnosis, either. And it should also not be too hard to get back to being a better student.

I am slightly squinty eyed with suspicion about how this can sometimes be a piggybacking disorder that coincides with some other problem (like RA), but, you know...we'll cross that bridge if we come to it.

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Ugh! What an icky diagnosis. It's always ends up better to KNOW what is going on, but still, the initial diagnosis and knowing you HAVE A THING is hard. At least there are things to combat it, so yay? Still, sorry you are going through this!

I feel you on the explaining things forever. I have routinely made new coworkers tear up, do double takes and otherwise have mini WHATWHATWHAT freakouts when I casually mention I have lung tumors, I'm 10 years out from my cancer diagnosis, no I'm not having surgery to remove the tumors, they are allowed to stay, etc.

How often will you need to go in for B12 shots? Is that something you'll be able to do yourself at any point a la insulin?

Thank you. And yes HAVING A THING, exactly - the whole "new normal" deal...

I didn't realize you had remaining tumors. It doesn't make me freak out, but it does make me want to ask you a bunch of questions which you would (obviously) not be obligated to answer.

For the shots, most people recommend a "loading dose" initially, which is one every day for a week - then you switch to weekly. I have read stories about people who go monthly or every 6 weeks, but they are heavily supplementing with B12 nose sprays and lozenges (there's a lot of debate about sublingual absorption...), which are expensive and not covered by insurance - AND they tend to be complaining that their symptoms are not going fully away :/ We'll see. Some people do end up self injecting, which I increasingly can imagine.

One great thing is I have a doctor I love (where I've been getting them done) about half a mile from my house, and I'm usually pulling in the parking lot and then pulling back out (done) about 15 minutes later.

Edited 2014-01-07 22:59 (UTC)

For sure!

You are welcome to ask anything you like. I'm pretty candid about my experience with thyroid cancer, I've had 10 years to get to a fairly zen point about it. I still get a little wound up when I have an imaging scan (next one is due sometime between July and October)

Well that sounds like it wouldn't be too terrible, especially if a doc you like that can do them is so close. So yay? :)

So ever since you commented that you have questions I have been WAITING WITH BATED BREATH for them. haha.

I know you have tons of other ish to deal with, but seriously, feel free to ask. I had a bitch of a time with getting candid information about thyroid cancer and how to navigate all of that when I was going through it, and it makes me feel good if I can pass on even a tenth of what I know if it can help someone else.

PM me if you'd rather take the conversation offline/elsewhere, I'd be happy to give you an email or even a cell# for texting.

Ok, so, I feel terrible for leaving you hanging! I keep wanting to just get back around to answering someone else's comment as a post and putting up some pictures I'd planned to around New Years...

I was mostly wondering how the tumors effect your day to day life, if at all, and what your prognosis is.

I am ok with talking here, or anywhere. I am REALLY BAD about answering texts immediately...or 3 days later...or maybe never :/ And the same with emails. I just have a lot going on right now, which sucks because although it gets in the way of my forming new (or nurturing existing) friendships...I'm also REALLY LONELY a lot of the time. So...people who understand my delayed and intermittent replies are truly priceless, and I periodically end up in fabulous extended conversations with them (and then nothing from either end for months...) But - to be brutally honest, and please don't take it personally because I mean it in a very generalized way - trying to attend to people who take delays personally or interpret them badly feels like an additional burden and I just can't, lately. The best is when someone else is also sometimes right there and sometimes nowhere to be found, and loves having a mutual understanding about that, and so nobody is ever offended and both of us can feel free to send 25 messages knowing they'll be read eventually, or just go to sleep even though our phone's going nuts because we're REALLY tired.

^That is my very direct way of laying out what (especially long distance) communication with me is like, these days, so that you can decide whether or not it works for you :)

Haha, I totally get you. Introvert with extrovert tendencies, I need a fair amount of recharge time and have similar views about people who demand my attention/time when it's not necessary.

No need to feel terrible about it! :)

The main thing for me is: take my synthroid every day.

The tumors don't effect my daily life at all. The goal is to keep it that way. They are in a spot (think the highly vascular area near heart + lungs) that isn't easy to get to surgically, and as I have no symptoms currently, the plan is to keep me on a high, thyroid activity level suppressing dose of synthroid and basically continue recheck imaging and bloodwork on regular levels.

CT scans are currently on an 18-month interval. My next is due in July-October of this year. My last one showed that my tumors were either the same size (good enough!) or perhaps slightly smaller (even better!). I generally don't get too spun up about my CTs until the week before I go in for them, even though on the whole I am pretty up and positive about the likelihood of a positive outcome.

Bloodwork is done most often, monitoring my levels of thyroid hormone as well as thyroglobulin (Tg), which is my tumor marker. Low/no Tg is the goal. 0 is really the goal. The last value I have a record of (I have been bad at updating my med info spreadsheet) it was at 1.2, which is low for me. Typically it's been difficult to get under 3.

After my lung mets were diagnosed, we went to MD Anderson for a consultation. Did a full battery of tests, MRI, CT, etc. The long and short of my prognosis is that as long as I keep my thyroid sufficiently suppressed so that those lung mets don't grow, spread or otherwise cause problems, I shouldn't have any issues from them and I am likely to die old and from something else. Thyroid tumors like to metastasatize to the lungs, so that is pretty normal.

I did have local recurrence of my tumor in the neck bed AFTER a total thyroidectomy and 2 radioiodine treatments, and had 2 additional surgeries to clear that out, followed by a third radioiodine treatment.

My hope is that if my lung mets ever get to a point where I NEED surgery, we'll have sufficient advancements in medical technology/laser surgery/other to deal with it in a neater fashion than we do now. But really I hope they never change and I eventually just need a CT every few years and that will be that.

I will never not need my thyroid bloodwork monitored, tumor markers aside. I need to double check with my endo, as she has been on a kick of lowering my dose with the explanation that I'm getting too much, and my understanding of the MD Anderson plan was to keep me on the highest dose I can deal with symptoms-wise and stick with that. They were even ok with me being on a dose high enough to induce palpitations and tremors and needing to take a beta-blocker to counteract. The beta blocker's side effects were enough of an issue for me that they agreed it would be acceptable but not strictly optimal for us to take the dose down to where I felt normal. I'm not having tremors or palpitations, and she still wants to lower the dose, so I'm not sure what else she's factoring in or why we're changing from what MD Anderson recommended.

The need for 2 additional surgeries is another story entirely, of which I have nothing nice to say about UCSF and their thyroid unit.

Introvert with extrovert tendencies

On my last meyers-briggs test, I got EXACTLY in between introvert and extrovert, 50/50, to where it said it was a tie o_O I think that a couple of accurate ways to put it, for me, are that I am a VERY PICKY extrovert, or, an introvert with no social anxiety. *shrug*

Your comment has made me think a lot, about things that can come to seem normal and how we can choose whether or not to fixate on particular issues, and how ALL of our bodies are really just complex, vulnerable webs of intricate systems that are each gradually wearing down...

I think that if I was you, I would definitely be doctor shopping big time for someone who would follow the MD Anderson plan. I would also be spending inordinate amounts of time trying to figure out exactly what my priorities and plans for the rest of my life were - not because it would necessarily be shorter than anyone else's, but because brushes with mortality in general just cause me to do that.

My hope is that if my lung mets ever get to a point where I NEED surgery, we'll have sufficient advancements in medical technology/laser surgery/other to deal with it

This is another thing I think about all the time. There are new studies out almost every day re: autoimmunity. And obesity, and both often focusing on gut bacteria. I feel that many things will be very obvious, when my kids are grown, that are only barely starting to be hinted at, now... Grant was just telling me the other day about a way someone invented for gun shot wounds to be plugged, on the battlefield, so that soldiers don't lie there bleeding to death until they can be taken to a hospital. Little things that make all the difference, that nobody had ever thought of before.

This is my own ignorance showing, I'm sure, but how is it that you've had a total thyroidectomy, and still need to suppress your thyroid? I understand the need to take synthroid since you don't have a thyroid to produce TSH, but not how you would have to suppress something that isn't there anymore.

Edited 2014-02-17 06:38 (UTC)

I need to update the email this account gets notifications too. Sheesh.

There have been several times (personal and work) where I've had to take personality tests of various kinds. At this point I just expect to have to take any test twice because getting an inconclusive result happens a lot. I've gotten more and more reserved as I've gotten older.

Learning new normals is an interesting concept to me as well. I originally had SUCH issues with having to take my synthroid every day. MD Anderson has good research going on, and the rate of advancement in knowledge and technology is SO FAST now.

I have gone through a LOT of endos. Everything from the southern good ol' boy who told me my 60lb weight gain immediately post-thyroidectomy was my fault, the awesome lady doc who left to kaiser, the INCREDIBLE old scottish gent who wrote the book on nuclear medicine and endocrinology (well-deserved retirement), delusional skinny japanese lady who at my intake appointment gave me the stunning dietary advice of switching my snacks to carrots, to the current one. I have pretty good faith we'll be able to get back on the same page. I just am not in any hurry to have to get another endo up to speed on my entire back history, yanno?

Need to suppress the thyroid because the tumors are thyroid cells. :) So they are thyroid cells gone whacko, and even though we removed the vast majority via surgery and frying them with radioiodine, some cells survived, and metastasized to the lungs. They will have uptake of iodine too, so radioiodine would work against them, generally. I may have an additional course of radioiodine in the future at some point, but I've already had 3 and I forget how many millicuries I've had but it's close enough to increased risk of blood cancers that it bears paying attention to. That and the last time I had radioiodine my tumors were kind of resistant to it. I am totally sorry if any of that explanation sounded condescending! Recently been told I go too high-handed with medical stuff sometimes (product of work + family) and trying to simplify.

You could just make a stack of pamphlets on the topic and hand them out to whoever is asking! As crappy as it is, you're right that this really is still a good diagnosis. It's easily treatable and everyone goes to the doctor anyway. Good luck!

Haha!

I don't normally go to the doctor unless I'm having a problem. Or a pregnancy :p Grant recently went to the doctor for the very first time in *11 years* (and that previous time was an ER visit for pneumonia following 8 years without a visit). We take our kids in for checkups every couple of years or as needed, which is often not at all (so just the 2 year checkup - although Elise was seeing a neurologist regularly for her first few years and Isaac has been to the gastro x a million). And pernicious anemia entails a LOT of visits...like daily shot visits for a week, and then weekly shot visits plus extra monthly labwork and 6 week checkups, all at the GP, plus specialists several times a year...forever! I was kinda hoping this "living at the doctor" thing I've been doing for the past year or so would come to an end soon...ah well.

I do agree with you overall, it could be worse. There are some terrifying and heart breaking stories on Pernicious Anemia forums, many people don't get diagnosed until they've lost the ability to walk and/or ended up critical in the hospital and a team is working on their case :/

Yikes. Yeah.. I'll agree that going that often really sucks. I had to go a lot over the summer and I was really getting sick of it. It's just awesome that you got a diagnosis early which probably means that your visits will be less involved. Hopefully it'll just become routine whateverness. I'm glad you're gonna be ok!

I am glad you know something and have a direction. Still not fun, I know. I have been worrying about you. So now...I guess I will continue to worry? ;)

Edited 2014-01-08 13:40 (UTC)

My grandmother had pernicious anemia basically my whole life. She passed away almost two years ago, but neither her death nor the cancers she had over her life had anything to do with her anemia (although some of the treatments did make the anemia flare up...if that's the right word). The later years of her life the treatment for her anemia was so much better, but she lived a very full and active life (she had five children and 14 grandchildren). It was really her other health issues that slowed her down over the years. All this to say, I hope it is some consolation to you that there is very successful treatment for this condition. And I am happy you finally have a diagnosis. I always feel for friends and family who are just waiting for answers, it is so stressful, but having a diagnosis means you can develop care/treatment plan. You can conquer this! You can do it!! First time poster, but long time reader. You are a good writer.

I had b12 shots for anemia issues throughout a large part of my teen years. Apparently they don't have to do it in your ass with giant needles anymore so there's that. It's not that bad, really. :-/ I don't know if that helps, it probably doesn't, but I mean at least you have an answer and things will get better? :-/ :-\

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