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...


Debbie said...

"Not everything is adrenal and thyroid. There are other conditions and body parts ya know....And we don't know everything…...

I think going on HC and thyroid for everything is the wrong direction."

Dana, I could not agree more!! I've been reading and lurking and researching, and am trying to get a handle on my health issues while keeping a clear perspective of all the advice I read/hear. Thanks for giving voice to the "inner whisper" in my head! :)

Birdlady said...

Hey Debbie, sorry I didn't comment on this sooner. I think it's good to just keep an open mind on EVERYTHING including what these alternative doctors are pushing too!

I've been at this for years and I can tell you for a fact there is no one magic bullet for all of this! If I ever find out what is wrong with me, I'll be sure to let everyone know what fixed me. But what fixes me may not be what fixes another. :)