Wednesday, December 31, 2003

I am not sick

...
Sometimes I look back over the past couple of years and freak out over the number of medical issues I've had to deal with. It all started with some irregular menstrual bleeding, that led to a diagnosis of hypothryoidism. Doc put my on Synthroid, which after 2 weeks totally whacked me out, making me hypERthyroid, because my adrenal glands were weak and I was anemic. It took several months to get that situation under control (oooo, migraines, sinus infections, palpitations, dizzyness, insomnia -- wow, that was fun! Not.), and finally got my thyroid meds stabilized and optimized.

At about the same time, I started having back/flank pain and joint problems... rheumatologist dx's me with both rheumatoid arthritis and fibromyalgia (eventually, that one took a long time). We've been trying different drugs. Celebrex chewed a hole in my stomach and I've got trials of Vioxx and Bextra to start, but I'm not that motivated. The pain is not too bad, and I'm usually only incompetent in the mornings, which explains why DD's ponytails are always a mess!

Anyway, after months of expensive tests, a 6-week course of physical therapy helped strengthen my back and taught me new stretches to alleviate my flank pain and ward off my killer sciatica...

Everything was going fine and then -- wham! Suspicious-looking moles. 3 biopsies and 2 further excisions later, I've got a dx of "atypical mole syndrome" or somesuch, with one of the biopsies coming back with the lovely and inconclusive, "cannot rule out evolving melanoma in situ." Well, it's good we got them all, but for a while I was walking around with the feeling that it was only a matter of time before the melanoma got me. I suppose that could still be the case, but it's not at the front of my brain like it used to be.

Then in August, I got my period and tried to use a tampon and... couldn't. There wasn't any room. Yes, indeed, my uterus/cervix were falling out (the technical term is "prolapse". So off to the GYN I went, and he says, "hysterectomy" and before I know it, I'm going under the knife on Halloween (the timing is a whole 'nother story). Now I'm wombless and OK with that, I was done with it anyway, but I do have the occasional weird twinges where things got sewn up, inside. It's still very soon after the surgery, though, so I expect things will improve even more as time goes on. And I still have my ovaries so I don't need any additional HRT.

About the same time as the falling-out thing, I started having this weird pain around my belly button, kind of like an internal pinching or pulling, on the right side. It's not a big pain or even that distracting, it's just ... there, and it hasn't gone away for must be 4 months now. Blah blah blah ultrasound shows "probably fatty liver". Doc (God bless him) orders every known test to man and everything comes back negative: no diabetes, no hemachromotosis, no elevated liver enzymes, liver and kidney functions are fine. Except I still have this stupid pain, which makes me wonder if it isn't my fibromyalgia attacking an odd muscle group (as it does in my back).

I did a boatload of research on this fatty liver thing. It can be nothing, or it can be really, really bad, like cirrhosis bad, or anything in between. I walked around depressed about having a compromised liver for at least a few weeks before I snapped out of it. I have absolutely NO symptoms of liver problems.

I am NOT sick.

Still, I wonder what the gastro-enterologist is going to say (or want to do to me) when I see him in a few weeks. That should be interesting. I just remembered when my back/flank pain was eluding diagnosis I had not one but two body scans that should've covered the liver, and neither one mentioned anything about a fatty liver, so it's something that has developed over the past 18 months or so... I'll have to make sure the new doctor gets those records, too.

So, I am NOT sick, but I have: a gp, an alternative healthcare provider (an LPN who treats my adrenals and nutritional needs), a gynecologist, an endocrinologist, a rheumatologist, a neurologist, a dermatologist, an opthamologist (need dilated eye exams every 6 months to make sure no melanomas grow in my sockets [now there's a creepy thought]), and now, a gastro-enterologists. I guess I should just be happy there is neither a cardiologist or an oncologist on that list, huh?

This has all been rather exhausting and expensive. I've thought for quite a while that, when God keeps throwing the same problems at you, He's trying to teach you a lesson. I'm not sure if that's the case here, though. I wish I could look back through my past and pinpoint one thing that started all this stuff happening... well, I can, sort of, but don't want to think of it that way: my third pregnancy --- it's not something I can undo, and there's really no lesson to be learned there, is there?

We didn't "try" especially hard for our DS2, we left it in God's hands, whether or not we would conceive (as opposed to the first two, which took a lot of planning and charting to keep track of ovulation and the possibility of conceiving). So if God sent me DS2 to devastate me physically, perhaps it was as a test of faith. So far, so good, !

This idea that there's something "wrong" that's causing all these problems for me, that could be "fixed" and then I'd be all right -- I'm pretty sure it's that idea itself that's wrong, this stuff doesn't seem to work that way. I am genetically pre-disposed to hypothyroidism (my dad's mom, and my own mom), as well as PCOS (rampant among women in my family), type 2 diabetes (so far I've avoided it through LC), and RA. On of my sisters also has fibromyalgia, the other, major back problems and sciatica...the melanoma thing is also a familial thing.

I have weak genes!

So I look at all this stuff and think, Thank God I found LC because I can imagine how much more miserable I would be if I were still eating low-fat and high-sugar. I'd be covered with melanomas by now, those buggers EAT glucose, and I'm quite content to starve them out! I'd have type 2 diabetes, and my RA would be crippling me... I'd need a much bigger dose of thyroid meds to get my sluggish metabolism moving... life would be one big unhappy pill box. Oh, I bet I'd be chronically depressed, too, since that also runs in the family.

I don't think I'll ever know the answer to the "How did I get so messed up?" question, but I don't think it matters. What matters is how I am now. Now, I'm dealing with this stuff and not obsessing over it or freaking out about it. It's just part of my life, part of who I am.

I am NOT sick.



Comment by Max on 12-31-2003 07:01 AM
Making a suggestion but not wishing this one you. Given your symptoms, one of the things I would check out is celiac disease. It produces strange symptoms because in addition to screwing up you gut, it messes with your absorption of nutients so you end up deficient in things. It can also create symptoms of pain due to general production of cytokines from the self-immune reactions. On low carb you probably don't get to much in the way of gluten unless you are using the wheat protein isolate products but even a tiny bit of gluten can keep the celiac symptoms going. Celiac is something that is a lot more common in the population than most doctors realize because they have been taught that it occurs in childhood. It turns out that for many of us it doesn't really start to act up until middle age after some sort of stressor. Ask you GI doc to test you for it. If he's doing an endoscopy anyway make sure he gets biopsy samples and he can also give you a blood test for antibodies to gluten and transglutaminase.






Comment by QuietI on 12-31-2003 12:04 PM
Thanks, Max -- this does make sense to me. I was tested for "leaky gut" and was found to be deficient in IGg and IGa and all those protective things -- then went through the triple-protocol for H. pylori, which did seem to help a lot.

I think one of the reasons I haven't been tested for food sensitivities is that I'm afraid to find out! I don't want to have to give up wheat/gluten altogether -- in truth, I eat very little, but that little, I do truly enjoy. I have always been a baker, and now I bake LC muffins or breakfast things once or twice a week... I suppose I can switch completely to nut and other flours, but I'm being a little childish here and don' wanna! I will definitely bring this up with the GI doc.

Thanks so much.






Comment by babybee on 12-31-2003 05:01 PM
HI there. Just thinking of you fondly.

BB






Comment by Max on 12-31-2003 06:18 PM
If you are deficient in IgG and IgA then you can't take the blood test for celiac. It tests for gliaden antibodies and transglutaminase antibodies in these two groups. If you want to know for sure you would have to do the endoscopy. Or just do the no gluten for a few months and see if it helps. I can make a huge difference in quality of life if that is the problem.






Comment by QuietI on 12-31-2003 10:29 PM
Thanks for all the info, Max. I know before I did the H. pylori thing I was testing as immune compromised (if I understand it correctly), all the "secretory IGx" levels were too low to measure. Supposedly, after th H. pylori treatment, they were to improve, but I don't think I've ever had them retested. So I don't know if they bounced back or not.

It's funny, I have all these autoimmune conditions, but my antibodies never show up. My thyroid antibodies have never been detectable altho it's certain I have Hashimoto's thyroid disease, given the nodules I have. I also always test negative for rheumatoid factor, but the rheumatologist dx'd me with RA anyway based on physical exam, ultrasound, and symptoms.

You have certainly given me a lot to think about, and I will get all my questions in order for the GI doc when I see him later this month.


2 comments:

Anonymous said...

hello my name is maria
I have just been diagnosed with an underactive thyroid i had positive anti bodies what ever that means and i have been put thyroxine 50mcg.I feel, after 10 days better and would like to get a full time job now(im a single mom and i have been too tired for two years to work other than a fe whours) what struck me about your writing was this right sided grab feeling, upper abdomen its horrible what is it? i had the gp examine me and she told me to take ibrofen and said i feel pain there because i smoke(not many) I hope you can help me Maria

Stew said...

For what it's worth, I can honestly relate to what you've accounted here. So many sickness, so little time. I couldn't have been more fortunate to have the entire chiropractors in Adelaide, Australia always behind me ready to diagnose and treat me. That's all because one of them is my wife. Cheers. :)