Sunday, September 26, 2010

A little rant...

I frequent a lot of different "health" boards where people share their experiences and lab work. Most of these forums have to do with adrenal and thyroid issues and over time I've come to the realization that they are all insane. Yes insane.

There is a growing group of people who are starting to spread these twisted ideas into other forums with nothing to back up what they say. They are giving people such horrific advice I actually want to vomit. Most of the time I seriously HAVE to comment or I fear for this person's well being. I have become the disenchanted voice on a lot of these forums, but for good reason. All of their advice did not work for me, so when I see people regurgitating the same bull shit over and over again it makes me very angry. The very people giving advice are sick. Can someone explain to me how that even makes sense? Why would you ask advice from someone who isn't feeling better and is posting their own questions to the group?

I know that these groups mean well, but I think they need to be more careful on what is being said. There is a fine line between "giving your own personal experience" and down right telling people that their labs are wrong (even when they are within normal range) and saying they need to take potassium, sea salt and whatever else they decide your labs show.

Let me try to come up with some examples here. These labs are all made up numbers off the top of my head, but the concept behind it are real life stories.

Person #1 Doesn't have many symptoms of hypothyroidism, but wanted to see their levels.
TSH 1.5
FT3 3.6 (2.4-4.2)
FT4 1.4

They are told they could use thyroid because FT3 used to go up to 6. I have no idea where people come up with this stuff, but it's ridiculous. I think these are damn near perfect thyroid labs! I do agree that lab ranges are very inclusive, but if someone feels ok where they are don't tell them they need to be a certain arbitrary number to feel better.

Person #2 Male, complains about being depressed, anxiety and has POTS. I always take special interest in cases where someone states they have POTS. Typically they don't like to hear what I have to say though because everyone at these forums and groups have told them that HC is the magic bullet (when it really isn't in most cases).

Here's the general idea of labs.
ACTH Mid range of lab
Cortisol AM Top of range (but I know that this can be artificially high)
Aldosterone Low (We don't know if they salt fasted, so I throw this out)
Testosterone Very low
Vitamin D Very Low
Calcium Top of range
Saliva cortisol results High in morning, Drops off at noon then perfect the rest of day.

One group said this guy needed HC immediately and his aldosterone was awful. Since we don't know if he salt fasted, you can't make that assumption on the aldosterone. As for his cortisol levels, I have no idea why someone would think HC could even begin to help this person. There are no indications that he needs it at all. Not even close.

Then he is told to IMMEDIATELY get on vitamin D. Well dumb asses if you knew what the hell you were talking about, you'd know that this man needs to get his parathyroid hormone checked before doing that. Having a high calcium (anything above 10.0) with an extremely low vitamin D is TEXTBOOK presentation of hyperparathyroidism. Oh but these groups are so hell bent that everything is either thyroid or adrenal, they miss the obvious.

That's all the examples I feel like giving, but there's so many. I'm so sick of these adrenal people telling everyone that POTS is cured by florinef and HC. You are WRONG. Maybe there is a small percentage of people who have Addison's and this is true, but POTS is much more complex.

Not everything is adrenal and thyroid. There are other conditions and body parts ya know....And we don't know everything. If you think you know everything then you are in for a rude awakening. I learn something new every day. My thoughts on just about everything when I started this blog a few years ago has changed 180 degrees.

I think going on HC and thyroid for everything is the wrong direction. EVERYONE is told their levels are too low or not "optimal". I haven't seen a single person told they were OK...

Tuesday, September 14, 2010

I've Given Up

Well today I'm raising my HC dose again. My skin is tanning around my eyes, so that's enough for me. It looks like I got punched in the face. I guess it's HC for life at this point.

Monday, September 13, 2010

Ugh HC Weaning Isn't Going Well

It's been another 10 days or so and my body cannot adjust to this lower dose of HC. Even my husband is seeing it. He's now remembering all of these weird symptoms I had that disappeared on HC. Now they are coming back and we aren't forgetting any longer.

The past few weeks I've constantly had that "I'm just feeling weird" feeling. The ringing in my ears is getting worse. I have moments of complete hearing loss in my ears for a few minutes at a time. I've been feeling sick to my stomach, almost flu-like without actually vomiting though and I've been having crazy hot flashes and chills. I'm way more thirsty and my pee is clear. This is all from lowering my HC dose, which makes no sense to me. I am getting up in the middle of the night to pee too.

Yesterday and the day before I had to take more HC. I was sort of afraid that if I didn't I'd start going down the adrenal crisis path. Ugh. I just hate to admit defeat on this because I really don't want to have to take HC for the rest of my life. It's pretty frustrating.

Thursday, September 2, 2010

Weaning Down HC: How it's Going

I can never remember what I even put on my blog these days. haha Well after a lot of pondering, I have decided to start weaning off the hydrocortisone. Yep...It's going to be bad. I know.

I've been dosing 15mg of HC at 7.5, 5, 2.5 for probably about 2-3 weeks now. It's odd because now I am noticing symptoms. I am feeling dehydrated for the first time in a year. Every once in a while if I am busy doing something I forget to drink, but I almost always have a drink of some type in my hand. I particularly like orange juice with a sprinkle of salt in it.

Well for the past 2-3 nights, I've been needing my water bottle next to the bed. Bad sign. I am also having night sweats and my fingers are swelling up like a balloon at night. I've noticed my face is looking puffier too. Last night at Wal-mart I was totally regretting not having a drink in the car with me. I used to be like that a long time ago...

Typically puffiness most would associate with over replacement. I can assure you that 15mg is no where near over replacement. I am struggling with nausea on a daily basis on this dose, but I am trying to see if I can even go any low. If I can't go any lower, then I think I can confirm true adrenal insufficiency rather than just fatigue.

I'm rather shocked at the weird symptoms I am getting. I never thought the thirstiness was fixed with the HC!

I'm giving this dose another 2-3 weeks and then I'll be going down to 12.5mg.