clevermanka | What I've got

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health

What I've got

Let's start with what I don't have. I don't have leaky gut syndrome. I am also not allergic to eggs. Yay!

So, now that's out of the way, let's move on to what I do have.

Hashimoto's Disease. It turns out I don't actually have hypothyroidism. That's just what I was treated for. Because standard western medicine doesn't feel like investing the time and effort into treating Hashimoto's as what it is (an autoimmune disorder), and there's no money in it for the drug companies, it gets lumped in with hypothyroidism and treated with such. This, even though the treatment for hypothyroidism eventually makes the problem worse and worse. Even the Mayo clinic says "Treatment of Hashimoto's disease with thyroid hormone replacement usually is simple and effective." Which is total B.S. It isn't simple, and it isn't effective. In fact, the Armour thyroid hormone I've been taking is possibly the worst thing, because my body sees the natural hormone and starts attacking it--whereas its response to the synthetic hormone wouldn't be as drastic. I'll be going back to the Levothyroxine (preferable to Synthroid because Synthroid has a corn starch base) immediately. Even though I won't feel like the drugs are doing any good, the supplemental hormones will at least protect my pituitary gland from sending out signals for more TSH all the time--and thus, will protect my brain from possible (more) neurological problems. A high count of neutrofils and a low count of lymphocytes are indicators of a stressed and overworked immune system--the result of an autoimmune issue (Hashimoto's) that's gone untreated for some time. The final deciding factor of this diagnosis was the fact that my thyroid antibodies, which should show in the 0 to 20 range, were an indisputably high 323. So it's most definitely my thyroid that's being attacked, rather than my joints, skin, kidneys, etc.

H. Pylori, Blastocystis hominis, and Entamoeba infections. I also have a non-human parasite present in my intestines, which was non-diagnosable but will hopefully be wiped out with the treatment for the other infections. Because of the numerous infections, my good gut bacteria have pretty much rolled over and died. My CFU (colony forming unit) per gram are mostly below the 50th percentile of normal gut flora population. Particularly low are my Bifidobacteria, which are at 1.8 when they should be around 7.5. The bacteria issues are one gut problem. The other is:

Hypochloridia. I can't find a good link for this, but basically, my stomach isn't producing enough hydrochloric acid to digest my food. Hence, food goes undigested into my intestines, where the intestines can't get nutrients out of it because it's not broken down enough, and everything passes through my system without my gaining much (if any) nutritional benefit from it. This means while I am not starving, I am malnourished. Judging from the fact that I've had gut issues since 2003, it's likely that I'm severely malnourished.

Food intolerances for gluten, casein, and soy. These are off the menu, permanently. I have the gene for Celiac disease, but it hasn't been turned on--yet. Continued exposure to gluten would trigger that switch, and there's no knowing when or what would be the limit. It could be the next time I ate a doughnut, so it's best to just avoid it altogether. I have no problems avoiding soy. Soy lecithin is okay because it's broken down so much and it's in such small amounts that the body just ignores it. I shall miss not having the option of the rare indulgence of cow cheese or real ice cream. Not that I've had either for almost a year now, but it was nice to think I could if I wanted.

Adrenal Fatigue. This is why I have to give up caffeine. My cortisol load is 64 (I'm unsure of the unit of measure) and the normal load is 23-42. The basic problem of the overload is exacerbated by the fact that my circadian cortisol profile is exactly opposite what it should be. When my cortisol should be the highest (morning), I'm at my lowest production rate. And when cortisol levels should be decreasing (around noon), mine are rising, with a peak around 4:00 pm. Then I have a pretty dramatic decrease (from a count of 27 to a count of 9) between 5:00 and 10:00 pm. This explains why when I get tired at night, I crash fast and hard. Associated with the adrenal fatigue are depressed progesterone levels (20 pg/ml when the optimal level is between 22 and 100) and depressed SIgA levels (less than 5 mg/dl when normal is 25 to 60). SIgA helps immune function, toxin neutralization, and inhibits (bad) bacterial colonization.

Estrogen/Progesterone imbalances. I have a short cycle (that part was not news to me). Because of the shortened cycle, my estrogen levels peak early. And because my progesterone levels are so low, they do not balance well. There's a great sentence in the diagnosis printout that says "Estradiol Peak is Not in the Acceptable Time Frame." Take that, estrogen peak! This imbalance is likely what causes the painful, heavy bleeding and the accompanying headaches, etc. It can also cause double ovulation (yay, tubal ligation!). This is the least of my worries. If I have to deal with only one of these issues, I'll take the nasty periods, thanks.

So that's the diagnosis. I'm trying to figure out what to do in regards to treatment. Yesterday I was all gung-ho about plunking down the Sixty-eight hundred dollars to pursue the offer of Dr. Pickel's care. But today has thrown a curveball and I'm not sure how I feel about it.

This morning, I met with Dr. Burt, my PCP, and was talked with him about these lab results and Dr. Pickel's analysis/suggestions. He was hesitant about a lot of it (he hadn't heard of some of the labs that did the analysis and was unfamiliar with Alinia, the drug recommended by Dr. Pickel for the bacterial infections. He agreed that it was worth my giving it a shot, though, and so wrote the prescription.

I took the prescription to Walgreen's, where I discovered that my cost for fourteen days of Alinia would be $327 and change. I called Dr. Pickel's office in a bit of a panic, because I simply can't afford this. He apologized and said he knew it was expensive, and that some of his patients had had better luck finding it cheaper through Sam's or CostCo. I told him I didn't have a membership to either of those, neither were in Lawrence, and I would have very much appreciated his telling me this information before I left his office yesterday, and before I took that outrageously expensive prescription request to my doctor (with the accompanying sick time and $25 co-pay).

By itself, this wouldn't have been such a irritation, but he also neglected to tell me at the last visit that his patients had experienced problems with some LabCorp facilities not taking Blue Cross/Blue Shield insurance--which is what happened with me and I drove to Lenexa (while fasting!) one morning, only to have to drive all the way back to Lawrence to have the test done at good old LMH. He apologized for not remembering to mention the potential issues with LabCorp.

But now he again forgot to mention the expense of this medication. What else is he going to forget to tell me? Those two experiences make me nervous, and honestly, a bit uninterested in forking over to him my entire savings account and then some.

I don't know what to do now, and I'm sad and frustrated and frightened. I'm also getting ready for another nasty period (due to start in 3..2..1..), so that's not helping my emotional stability. Yesterday I was a bit shocked over the information and price of treatment, but I was so relieved that someone looked like he knew what he was talking about had a course of action for me and was going to tell me what to do. I'm just done with self-diagnosis and self-experimentation, and I just want someone to tell me what to do already. I want it to be someone I trust, though, and today I don't trust anyone.

All this information and nowhere to go with it.

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I can totally understand your renewed frustration about cost-related issues, especially as you are so close to doing some things about your issues! I had thought that all treatments were included in the $6800 cost? If not, I suggest asking Pickel how much more you can be expected to pay out of pocket for things that aren't included in the "all-inclusive" cost structure.

Another example of "We have the best healthcare system in the world... for rich people!"

Wow. I don't even know what to say to any of this, besides hugs and sympathy and etc. The medical field can be so frustratingly obfuscatory when you're dealing with minor things, I can't even imagine what something like this would be like.

It's sadly not much, and probably goes without saying, but if you ever want people to commiserate with, or to distract you with jabbering or horror movies, we're always game.

Well, if nothing else I've got a Costco membership. I'd be happy to be your med enabler. Let me know.

*hugs*

Information is good and, whether the doctor is worth the money or not, it looks like you got some information that you can work with. *hugs*

I'm on synthroid. My doctor perscribed it to me for my meds related hypothyroidism with an off-handed comment that Hashimoto's is common where I live.

Edited 2011-03-24 19:55 (UTC)

Ugh..I'd be hesitant as well.

However, having some insight.. Good.
The hypochloridia may clear up once the H. Pylori is wiped out. You know, I think Dr. B gave me some Ranitidine (?) for seeing if it would help when we thought I had it.

But holy f'ing $hit on that drug! I wonder if you can order it from Canada?
It sounds like most of this can be treated with Naturopathy, and aside from the a$$biting drug, that's what Dr. Pickel would do.. so where da fuck is his treatment worth 7 grand more? Grrrrr.

You do not need a membership to use the pharmacies in Sam's or Costco. You just let them know at the front door that you are there for the pharmacy, and they will let you in. You can't buy anything else, but by law, they have to allow you in to the pharmacy.

Hope that knowledge helps!

That's good to know!

jesus. how unthinkably crap.

i wonder if it would be worth it for you to go on the progesterone only pill? i have been on it for ages, and before it i tolerated the 3 monthly injections well. i haven't had an active sex life for ::cough:: but i don't take it for that reason, i take it not to have periods. and that, mainly to avoid migraines. for some reason they seem to be super bad ones as well. it may be that i have endometriosis, which would explain that.

if you can't get a 'cure all' then addressing things in bits is probably the way forward - like dealing with your diet. luckily you are already into the world of mind over matter with food, which is half the battle. some people can just never get the idea that they might control what they take in through their mouths.

i seem to have at least three, maybe four distinct different things wrong with me, and even the surgery i am getting is only a patch up of a bigger thing, probably, if it turns out to have been caused by endo. happily for me, like you, i am prepared to be creative and think around the thing. this is what will keep you sane about it. you are bound to feel overwhelmed when you get stuff like this happening, but it is all information, and you will use that information the way that you see fit.

I can't think of things to say other than ::hugs::, and that info is good, and that

elaine4queen's comment says it well.

Oh honey I am so sorry. J and I are unfortunately now well acquainted with the incredible cost of medication. I am sorry you are having this experience. Big hugs.

Holy smokes...on all levels. :( I mean, yay for having some answers, but did you have to have SO many answers, you know? Like, why couldn't they come back and say something like, "oh, it's just a simple bacterial infection, here's 10 days worth of meds, thanks for coming in"?

Sadness about the sheer volume of things to sort through and deal with, but gladness for at last having the answers.

Holy Crap. I too have a costco card. I also have a crap ton of awesome pain med's that they gave me when they cut me in half, incase you just want to escape for a bit.

*sympathy* As everyone else said, good that now it's the devil you know, bad that it costs so much to deal with it.

Jezuz effing ugh.

Answers: good.

New problems: bad.

And, yes, I imagine trust is in rather short supply right now. :(

That's so much money, OMG. And so many diagnoses. I can feel my heart welling with sympathy for your overwhelm. :(

As someone with multiple health issues myself and seven or eight prescriptions keeping me balanced, along with a genetic fuckup that cannot be medicated but which I can only watch get worse, I truly, truly feel in some way what you're going through. *hugs*

Oh honey. I just don't even...

Manda has Hashimoto's too. I can give you her email if you want.

The rest of it just....bleh.
{{loves}}
whenever you needs it

Ugh. All of that sounds perfectly terrible, though I imagine having some idea of where to focus next has to be helpful.

Do you think vinegar or citrus juice taken with meals might help lower your stomach pH enough to boost food breakdown and absorption? I know it could only be a short term fix if it did work, but having a properly fed body is a pretty big thing.

I hope you can find someone to work through the worst of this with you, and that you can set out a manageable treatment plan.

Much love,
Rowan

but having a properly fed body is a pretty big thing.

Indeed, the majority of today's society is malnourished for different reasons and we often wonder how it affects their physical and mental health.

I'd like to add that the stomach makes acid while it sleeps. This is detrimental to those suffering from high acid, but essential to a whole night's rest.

More easily digested foods would help a great deal too: juices, fresh soups, jellies, fruit, tofu and other vegetable proteins/butter. Vitamins assist toward absorption as well as compliment anyone not quite getting the daily allowance. I find I feel IMMENSELY better when I take mine.

The good news about poor health, is that if you do something about it...it leads to good health. In my case, through a lifetime of work, I'm coincidentally far healthier than most people that I know. *lop-sided smile*

Edited 2011-03-25 00:22 (UTC)

Ugh, I am so very sorry. I detest our health care system, I truly do. I trust no doctors either, at this point. There must be some doctors about who know things and aren't jack-asses... somewhere.

xo

Whoa. That's a lot of diagnoses there. What sort of doctor is Dr. Pickel? I must have missed you mentioning him previously.

I am skeptical of some of these diagnoses, and the foundation on which they are laid. I am extremely skeptical that you should give this doctor thousands of dollars. What treatments is he offering you for this kind of cash?

I don't know how attached you are to all of this, so I don't want to go debunking left and right and upset you. But, for starters, the bugs; I disagree with the interpretation. Great, maybe you're colonized with these bugs, but you are not "infected" with Entamoeba, for example. You are possibly carrying one of the completely benign non-pathogen varieties; the infectious one, Entamoeba histolytica, causes amoebic dysentery (you'd know if you had amoebic dysentery). Entamoeba coli is normal gut flora. Re: the H.pylori, I'd need to see what test was positive for that, and from what source; was it the CLO test, serum antibodies, etc.

Edited 2011-03-24 23:34 (UTC)

agree.

I'm glad I'm no the only skeptical one here, because I lack the background to have more than a knee-jerk reaction.

I have been through so much shit like this. I truly feel for you.

I don't know. It sounds like you need to improve your intestinal flora #1 and THAT -- as I've been in those shoes -- goes far to improve much else. Including allowing you to digest things that maybe are currently off the diet and killing of microbes that may not have any business doing a boogie in there.

There are other forms of caffeine than coffee and decaf coffee (though that is high in acid), but caffeine is another fave to pull away in a case of, "We're not exactly sure what the fuck it is." It's up there with dairy. In reality, you're probably just drinking a little too much and not getting enough rest/meditation. This whole scenario can't be doing a lot for adrenaline glands either. Stress can't be much help to menstruation either.

If it were up to doctors I'd seen, there are ailments I'd still have to this day that I don't. Including an ulcer. It meant babying my stomach for about a year (easy since not babying it was punishing), but it's gone and it meant that I had a new respect for how I treated and thought about my body. School don't teach you this stuff -- school was part of the reason for the weakened stomach, though ultimately not to blame. The key was indeed stress, though my high acid diet and lack of sleep wasn't helping.

You pursued a hunch though, you got some new info. That info would be more powerful with even more info perhaps -- I don't take the first piece of data that I get. I believe in trusting gut instincts, I believe in paying attention to small things, I'd feel a lot like you at this moment.

What if you pay all this money and it doesn't work? IF you're like me, the answer is: tough. They don't owe you nothing. Big promises and if it don't work completely, well ya rolled dice. At the moment, I'm rather out of dice and I've spent a lifetime looking for answers only to find some of the simplest work best and different genetics is what we all really need. ha, ha.

Take some deep breathes. Tell yourself it is going to be OK. Because one way or another...it is.

Edited 2011-03-25 00:16 (UTC)

You do not have to have a Costco membership to use their pharmacy. Call and ask the prices.816-216-0002 for the one on Linwood in KCMO.

How overwhelming. You are in my thoughts.

Gah. That is shitty.

Maybe it's a minor thing, but if you're craving ice cream, I found a substitute that tastes just as good. No, really: Coconut Bliss (http://coconutbliss.com/).

L.,
I can't even imagine what you are going through emotionally right now. Know that you are in my thoughts. I'd rather have words of wisdom...

Man, this stuff sounds awful, and it also sounds like you're right to not want to put 100% trust in this guy--but then *that* opens the horrible question of "What to do about it?"

Here's hoping an inexpensive answer presents itself.

Holy Crap! i send hugs your way

I really hope that this is not true end to end,
I would cry out for a second and third opinion...
Just to triangulate on where to start or what not to do.

I worry about the competency of Pickel, and his belief that you have money to throw around, both at him and at pharmacies.

If I was still in town, I'd hook you up with Howard Stark, Mad Pharmacist, and ask him which Real and hyper-smart docs he would commend to you.
Hmm, I can still do that from here if you like.

Yes, PLEASE!!!! And thank you.

I went back to some bookmarks today and found that your condition totally makes sense (http://thehealthyskeptic.org/the-thyroid-gut-connection) according to The Healthy Skeptic. I'm so glad you haven't gotten to the point of leaky gut.

From today's post I guessed I'd missed a diagnosis post and came to check it out, oh Honey. Hugs.

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What I've got

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Ugh

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I'm allergic to life. :P

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