Tuesday, November 29, 2011

Back to the docs again, for the roller coaster ride

So, when I checked in on this issue last, I had managed to break down as far as 380lbs, and was holding steady under 395 most days; that being 117lbs weight loss in 9 months.

Unfortunately, a couple months back, my peripheral neuropathy began to get worse... much worse.

By about six weeks ago, I got to the point where I couldn't actually feel my fingers or toes, could only partially feel my palms; and had tingling and shooting pain from my fingertips and toes, to my elbows and knees.

It was a matter of good days and bad days; some days it wasn't all that bad, somedays I couldn't make a fist.

My docs didn't really have any idea what was up. There was no obvious reason for the problem; except for the swelling caused by the edema, and that shouldn't have been enough to cause neuropathy that severe (though some was expected).

One rather nasty possibility, was pernicious anemia; which is the loss of ability to absorb b12. B12 deficiency is the second most common cause of peripheral neuropathy.

At the same time, my diuretics also stopped working; however my kidney function was OK.

That was an indicator, that I was severely deficient in something; but we couldn't figure out what, because my blood serum levels were all in the "normal" range.

As a last ditch measure, we decided to stop all my medications for a week, to see what would happen.

What happened, was that my neuropathy improved dramatically.

What also happened however, was that I gained 48lbs in a week; shooting up to 428lbs.

We also did a series of blood tests before and after, and again everything seemed normal (except my cholesterol is up from 160 to 180 in three months; which is odd since I haven't been eating as much red meat or fatty foods lately). My a1c was 5.6% (the most common cause of neuropathy is elevated blood sugar). My b12 level was 470pg/ml, which is right in the middle of normal (though they prefer to see levels around 700).

Of course, that B12 level was after me taking megadoses of the stuff every day for months (megadoses in the range of 100,000% RDA); so it really should have been higher.

That was an indication that I wasn't absorbing B vitamins properly; but since I've managed to get my potassium and magnesium under control, it was somewhat odd.

We added my medications back one at a time to see if we could induce a problem again; we couldn't.

So... what happened?

Excess vitamin B6 is what happened.

Or rather, I made an idiotic mistake is what happened.

When my neuropathy started becoming more than just an annoyance, and I started having some problems with B vitamin absorption, I started taking large doses of the various B vitamins. At first, that made the neuropathy much better, but after a couple weeks, it started getting worse again.

Apparently, a side effect of large doses of B6 is severe neuropathy.

The funny thing is, that's also an effect of being deficient in b1, b2, b3, b5, and b12; and prior to taking the high levels of supplementation I was experiencing the effects of too LITTLE B6, which include seborrheic dermatitis (really bad dandruff, acne, and skin rashes).

So, I had to supplement all the B vitamins, but I was taking too much of the b6.

So, we switched from a b complex (which is all the B vitamins mixed together), and cut way back on the B6 supplement; and my neuropathy is back to a tolerable level. Now I'm back on my normal ridiculous dose of diuretics and anti-inflammatories.

The only problem is, I may have suffered some permanent nerve damage. We'll know in a couple months whether things go back to "normal", or whether there is going to be some permanent pain and loss of sensation.

In the mean time, I've lost pretty much all of those 48 pounds since Wednesday (when I got the last of my test results); weighing in at 382 yesterday morning (yeah, I know, 46lbs in five days isn't healthy).

The funny thing is, I'm still bloated with excess water (and my weight is still fluctuating as much as 16lbs per day)... I'd estimate at least 16lbs worth; so my "Real" weight is probably something between 360lbs and 370lbs.

Oh and my sleep apnea stopped as soon as I dropped under 400lbs (and was very much reduced when I went under 420).

My endocrinologist is recommending to my surgeon that she conduct the surgery as soon as possible, that I don't need to lose any more weight before she does it (when we spoke a few weeks ago, she wanted to wait 'til I was at 360lbs).

So, we'll see. Maybe I can get the tumor out this year (and under this deductible). If not, I'll have another $16,000 in medical bills I can't afford in the first few months of next year.

Mean time, this is what I look like today:

I have a jaw and cheekbones again. Compare that picture to this picture from my brothers funeral in JAnuary:

or even this picture in August:

The difference is huge. For one thing, I have a chin and cheekbones again.