Ice Cream with a Side of Lube

Saw the endo today.

Lost 5 more lbs of what, I assume, is the rest of my vacation weight. So 11 lbs lost since the end of May.

3.33 lbs per month.

Kinda slow.

But still 5lbs down.

Aaaaand after liberal application of lube for the ultrasound, no growth on the thyroid nodules!!!!

When I got home (after a 5 hour office visit) I celebrated with Ben & Jerry's ice cream.

And promptly got food poisoning. Actually, maybe not food poisoning so much as the pill does weird things to my gut and makes me sick every once in a while. I have zero digestive problems off the pill, but on it is another story entirely.

But damnit I am not throwing up B&J.

And I didn't.

Endo ordered some blood work to check the thyroid and some other stuff that I lost track of. We are not testing the adrenals because there's no point--I'm a little foggy on the logic of this--but essentially I'm going to get sick with preschool germs and end up on steroids anyway and we can't test if I keep taking steroids so why bother? I think I have that right in which case I'm a little confused about the whole thing. I mean, I sort of get it, but how/when do we try to figure out if I have a permanent adrenal thing going?

Anyway, I kind of like my endo but I'm still not sure they're the right doc for me. I feel that they listen really well. Even if they aren't responding to everything I'm bringing up, I feel like I'm heard. They are very respectful and took time to show me today's ultrasound in detail complete with thyroid model, but aren't always answering my questions. I'm not sure if my questions are getting lost in the flow of the appointment or if I'm just being side-stepped.

I was also really tired today, so maybe I was speaking in tongues.

Hashimoto Hell

Here's the thing that bothers me about the whole thyroid deal-io.

When you are dealing with asthma, no one is complaining that their meds don't work or that the doctors don't listen (okay, there's me, but I am a very, very small minority and I have horrible karma. The vast majority of asthmatics are off living their lives not whining on the internet, agreed?) For such a common illness, there aren't that many patient bloggers with asthma from what I can find. No one is writing books entitled 'what your doctor won't tell you about asthma' advising things that run counter to current medical training.

Even alternative treatments aren't really big with asthma, mostly because allopathic treatment is so effective compared to herbs. For example, mullein, an herb traditionally used to treat asthma, has never been clinically studied (to my knowledge) so if you are looking for natural treatments for asthma, guess what? You're a guinea pig using an herb based on the cumulative lore of some witch coven from the 1300s. Have fun! Let me know how it works out for you!

The thing is, Advair and Symbicort etc... work. They work well.

Asthma is a disease that does well with mass produced solutions. Just take your inhaler and you're pretty much set. It's very one-size-fits-all.

Thyroid problems are not.

On the one side you have the endos, on the other a lot of really unhappy patients--all of whom seem to have taken to the internet to complain.

"Take iodine," say the informed patients.

"Don't take iodine," say the doctors.

"Take selenium," say the informed patients.

"Selenium what?" say the doctors. "Why?"

This is just the tip of the iceberg. There is not one single thing about treating thyroid problems that patients haven't found a bone (or three dozen) to pick. And then there are the patients that disagree with the rest of the patients, which is really confusing for newly diagnosed patients like myself.

So the big question is, who to believe? Who is right?

The patients just aren't happy. This is a huge red flag for me.

When I emailed my relative with Hashimoto's to inform her I had 'joined the club' she responded with a sardonic 'Good luck.'

Do you know what this all says to me? Treatment sucks and doctors don't want to talk about it. The medical paradigm is out-of-step with the patients. Enough so that patients are taking things into their own hands. Always a bad sign.

Happy patients don't spend hours on the internet grousing. They don't write books to save others the hell they went through. They don't blog. Or start message boards or sign up on Facebook. They just go live their lives.

So it seems we have a significant demographic that is under served and medicine doesn't care.

Yay. Just what I always wanted. More weird medical crap to slog through. How do I get so unlucky?

In Search of Iodine

The consensus is I am iodine deficient. I don't eat fish or sushi. My salt is not iodized (which I didn't even realize this until all the Hashimoto's stuff started). I don't get any carbs fortified with iodine either.

As a result, some iodine supplementation is recommended.

But not a lot because my thyroid is "on the edge."

No more than 200 micrograms, I was advised. Further, I must avoid seaweed or kelp at all costs.

Or something baaaaaad will happen. My head might explode or a third eye might pop up. Something.

While I am aware that the patient advocate side of the thyroid debate often urges more iodine, I'm okay with being conservative. No need to drive my thyroid completely off the edge Thelma & Louise style. I still have a lot to learn as a patient here. I don't know what I'm doing and there's a lot of quackery to sift through. So I'm being careful.

However, did you know that almost no one sells iodine supplements with 200 mcg or less? Most iodine supplements are in milligrams too, and in super high doses. The few that are 150-200 mcg are made out of seaweed and kelp.

Errr. Okay. Where does that leave me?

Eating my daughter's Gummi Vites, that's where. Hey, they're handy, they taste good, and if I eat 6 I get 150mcg of iodine, win-win.

I begin to see why the first endo favored multivitamins, they are almost the only source of an appropriate iodine dose as far as I can find. Perhaps if he had explained it that way, I would not have thought he was such an ass (although there were other issues with him).

Also, I'm thinking about ordering some endocrinology textbooks. I am not finding good answers to my questions (whether through my own research or from doctors).

For example, exactly what is the problem with goitergens? What is the mechanism of action?

I have been told to avoid them. I have read that if I am iodine deficient and supplement I can probably eat them. I have talked to other thyroid patients and they all have variable tolerances to goitergens. There's a ton of goitergen 'chatter' but I am not finding anything that explains the physiology. Which I would like to understand because that's how I roll, I like to know.

Also, goitergens are my favorite veggies and I am quite petulant about the idea that I may not be able to eat them anymore. Yes, my love of cabbage, brussel sprouts and broccoli is enough to drive me to slog through medical textbooks.

Hey, I'm the Pissed Off Patient, nowhere have I claimed to be normal.

If you have ever eaten roasted brussel sprouts with shallots, bacon and a shot of balsamic vinegar...well, you understand where I'm coming from.

ETA: Wikipedia has a decent page on goitergens or goitrogens as it is sometimes spelled. The citations aren't fantastic, but decent.

Sometimes I Am Prescient

When I was a kid, don't ask me why, but I once said "Man, it would really suck to have asthma and be diabetic, wouldn't it?"

I was 16 at the time. I have no recollection of what prompted the statement, but it stands out in my memory for some reason.

Probably because now look at me... here I am flirting with diabetes and total destruction of my thyroid (you know, just in case asthma + diabetes is easy peasy).

Hahahahaha. Irony. You blood sucking heartless bitch.

Ahem. I digress. The point is...

This afternoon I was on hold with a doctor's office for an eternity so I was googling to pass the time and found this little study abstract. (The toddler is napping by the way.)

The title alone makes me happy. "Insulin resistance is a poor predictor of type 2 diabetes in individuals with no family history of disease."

Then this: "...insulin resistance per se is not sufficient for the development of diabetes in individuals without family history of disease..."

I have no family history of diabetes. I might have a shot here. I'm trying not to get too excited because it's a snippet, one from the internet no less. Who knows where it lays (lies?*) within the broader context of science, so I'm not truly qualified to interpret it.

But it made me feel warm and fuzzy inside when I read it. Good enough for me!

Oh as for the hold thing...I'm trying to see if I can go back to my RE. Regular endos are too rigid. I need Doctor Cowboy not Doctor By-the-Book. Reproductive Endocrinologists are much more flexible, creative and interested in what the patients have to say in my experience.

Also, I would like to not bleed to death. Which is, unfortunately, still a concern. I am taking the pills that are supposed to stop it. They aren't working. I think I need someone who knows their way around not just the hormones, but the girly bits too and regular endos, well, they don't keep speculums in their offices now do they? Or transvaginal ultrasound equipment.

All the regular endos are totally missing out.

I didn't make an appointment yet, just called to see if I could and turns out I can! I think I will wait to see what happens with the OB, the lump and my blood pressure and decide from there whether I need to drag the RE into this mess or not.


*Yeah, yeah, yeah. I can use the word 'prescient' but can't figure out lay and lie. Sue me.

NEXT!

Well, the good news is that each endocrinologist I see is better than the last one. The guy today was decent, but still not quite hearing me.

The hubby was there. He said I communicated well and agreed that the doc just was not hearing what I was saying. Hubby even spoke up and tried to help, but we just couldn't break through.

I think it was a fat bias. All doctors believe if I just lost weight, all my problems would disappear. Even my husband, who managed to watch me go through 4 years of infertility treatments without learning anything, thinks this logic is fallible.

If he can see it...?????

So this doc's perspective is that my weight = high blood pressure.

Okay fine. If my weight is the constant WHY did I have to stop ALL BP meds while on prednisone?

What changed? Hint: It wasn't my weight.

I was still fat the whole time I was on prednisone so...?????

Am I missing something? If I am PLEASE tell me. I mean, my PCP gets it, how could a specialist not?

Today's endo admitted my BP reaction to prednisone was not normal, but apparently not abnormal enough for him to want to do anything. (Are there legions of patients out there who have low blood pressure on prednisone and zero underlying pathology? If so, where are they? Google can't find them.)

Other than that, he was professional and courteous and a teeny bit more open to my input than the last guy. Much better communication skills. Still not quite the best fit for me.

Anyway, on the thyroid front, I guess I really do have Hashimoto's. I got a good, rational explanation of why they wouldn't bother to test for antibodies and feel comfortable accepting the diagnosis now. I need to follow up with more ultrasounds for the nodules, be careful not to take too much iodine (I'm not taking any right now) and avoid cabbage (ironically after I just made a week's worth of gingered cabbage coleslaw).

On a side note, the nurse pissed me off by flat out refusing to enter all the supplements I take into the system. Since some of them cross react with prescription medications, I thought that was irresponsible. I told the medical student as much and she had to input them all.

That is a minor quibble, but still WTF? The medical community says 'tell us everything you're taking' and then you're going to say 'no' when a patient tries to follow directions? Grrrr.

Bad nurse. -10 for you.

From here, I'm going to try one more endo and then I give up. I can't just go to the doctor non-stop. I have a life and a lump that needs to be palpated--got to find time to squeeze that in.

If the 4th guy isn't getting it then a) I must be fine and over-reacting and b) if there is a problem, hopefully, it will become glaringly obvious to someone somewhere so I can get the right care and c)I'll just keep asking 'What about the blood pressure and prednisone?'

I'm not going to let them forget.