The World Will End on December 22nd.

December 22nd is the big cortisol challenge day. So you have even less time than you thought. On the up side, don't bother wrapping the Christmas presents.

According to the toddler Santa is coming tonight, so if the big guy is changing his schedule, well, you've been warned.

I am taking 25 mg of Hydrocortizone now. I don't think that 1 extra pill is doing much. When it wears off it hurts. Big time. Ouch.

Today I will be cleaning house right when it stops working as we have the toddler's very first dance recital tonight (last night by the time this posts) and the grandparents will be visiting.

I'm in a weird mood that does not feel like me. Kind of down and out. Unhappy. Feeling pretty much ganged up on by my body and it's medicine that's holding me down so I can't even defend myself against the next sucker punch.

The drama with the damn cortisol test was the last straw and I've been having a bit of a break down. Even though they did squeeze me in this month still.

This is month 9 and I'm no closer to any resolution than I was back in March/April.

I've read some unpleasant things that I can't unsee. Did you know some of this hormone autoimmune stuff can be cancer?

I had no idea. I merely thought it was all about replacing hormones and going on your merry way.

Assuming I understand everything correctly, if it's an autoimmune thingie then I enter a category of ailments that could include cancer.

Now I really don't want to have Hashimoto's. Or nodules on my thyroid or anything at all growing in my lungs.

I need a time out, where all this just stops for a while but I don't know how to make that happen.

If I am lucky maybe I'll get a call that the CT scan couldn't find the growth or that, if it's still there, it didn't grow. Wouldn't that be nice?

Answering a Reader Question RE: Hashimoto's

Here's a comment to one of my posts asking me some questions about Hashimoto's.

"Have you read stopthethyroidmadness.com. What are your impressions of the site. I would think that is an excellent site. Your supplements etc are totally different from their recommendations. It would be nice to know your impressions on that site. My brother has very recently discovered to have Hashimoto's. The advice on there website seemed quite good.
thanks "

And my answer....

1. My supplements are almost all geared toward dealing with insulin resistance and my cholesterol issues. They have nothing to do with Hashimoto's. My Hashimoto's is in the early stages and is on the very bottom of my triage list. I'm focusing very much on the adrenals and weight loss right now.

Although, your question did remind me of an omission. I do eat my toddler's gummi vitamins to get some iodine in my body. However, iodine is a tricky subject when it comes to Hashimoto's, it can hurt or help depending on the patient. I opted for it because I'm likely deficient.

So, please do not copy my vitamin regimen if you have Hashimoto's. It's not going to do much for you in that regard.

2.I like the Stop the Thyroid Madness site. I don't agree with every single thing over there, but it is a great place to start and there's a lot to learn over there.

I would also suggest looking into Mary Shomon's books and website too. She has a ton of articles on About.com as well.

Lost

I am so confused by all this thyroid stuff.

So, with Hashimoto's, like what do I do? Endlessly cycle through hypo and hyper until the thyroid dies and then take medication?

But how often/frequent is hypo/hyper cycling?

What are the long term health effects of that process?

I think I just went through a hypo cycle. If that is even possible.

My hair was falling out. Still is actually.

Pretty awful muscle pain, akin to arthritis and all over my body for no known reason.

My blood pressure was spiking for no known reason.

The blood pressure is the sticking point for me. It can't be good for me to go high and then drop low. Even if the high pressure is temporary, it's not benign. So do I take bp meds preemptively? Then how do I handle the unnatural lows?

There's just not a lot of info on Hashimoto's because the prevailing medical wisdom treats it as a non-issue until the thyroid is in bad enough shape to need meds. I don't think it's as simple as that. Heck I know it's not as simple as that. Little details matter and if I have an active autoimmune issue, there's no way that's benign.

It's like saying because my asthma is controlled on asthma meds, I don't have asthma (I have met docs who think like that too). Just because I don't meet arbitrary criteria for needing thyroid meds, doesn't mean things are great.

I'm just not convinced medicine has all this thyroid stuff figured out.

I am aware of the studies showing that patients who take meds before the thyroid is decimated do better and I believe that is the direction the standard of care will eventually go. Until then, I'm s.o.l.

I think I may be coming out of the hypo cycle or, if it's the adrenals, they are coming back. I still need a nap every day, but I feel better otherwise and am able to do about 80% of what needs doing.

For example, today I will clean the house but not exercise. I'm just short on energy to 'do it all.'

My goal right now is to ask the endo for some bloodwork and to clarify some questions on the adrenals.

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.

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.