Turtle Tribe: call to action

vinesqueen · March 14, 2006

Hi Nanster! It is way to early to know if you are a Turtle, we usually don't really know it until 4-6 months after we are banded.

Congrats on losing so much so fast!

Many people don't lose any weight in the first few weeks after banding. Keep in mind that this time is for healing and any weight lost during this time is bonus!

vinesqueen · March 14, 2006

Okay, I know that several people have had their thyroids checked, but the test results came back "normal" and "fine."

Okay, if it isn't the thyroid, what is it? If you endo tries to end it with your thyroid, start pressing about cortisal and ask for the tests for Cushings.

If one answer is no ask for more. Do not accept non-loss without a fight! Push and Push and PUSH!

nanster · March 14, 2006

Kryssa,

Thanks for the positive comment. However, I still may be a turtle, as I lost 8 pounds just over that first weekend...due to the "crash". Since then, I've only lost 5. Believe me, I'm thrilled!!! The MOST I EVER lost prior to this was 22 pounds when I was "hopped up" on Metabolife. I felt great, but I got so shaky I could hardly write!!! So, I had to back off on the dosage; soon as I did that, no results at all. One difficult thing for me is that I cannot tolerate sugar substitutes, unless it is a miniscule amount per day.

I have to admit, now that I've gone through "detox", I'm actually feeling relatively satisfied with my current eating...not as horrible as I imagined it would be doing mushies. I just hope I can maintain control once I'm released to have regular food.< /p>

Nanster

LilAngel · March 16, 2006

vines, speaking of thyroids and being "fine" i got some blood tests back that I took to double check be after this last run of meds. now they say i am in normal range. maybe this is a recent thing. i am going to give this a little while longer to see if any more weight drops, if not PUSH I shall!

ps. i am feeling beyond exhausted these days. i have to go out on lunch time at work to take a quick nap or i can barely make it through the day. how normal is that really when you are getting plenty of sleep? normal, ha!

vinesqueen · March 17, 2006

Hi Angel! Very glad your thyroid tests came back normal, but I know how frustrating that "normal" number can be! Okay, since it isn't your thyroid, I think it's time to ask whether it is your cortisol level that is out of whack.

This is frustratitng, this not knowing why we are Turtles, why we can't seem to lose weight. It's hard to deal with on so many levels.

Let me know if you think I should post the signs and symptoms of Cushings again.

LilAngel · March 23, 2006

Thank for being understanding. It's weird to me when someone "gets" it.

I just did a search for your thread on cushings and reread the symptoms list. I am just not sure if that would be me. Of course, I am not a doc, so I guess I am not supposed to know. The one thing they seem to say is always shared by those with cushings is the thinnig arms, legs and excess weight in face. I would say that I am the opposite. I am shaped something like Grimace from Sesame Street--smallest at the top of my head and increasingly larger as you go down.

there were a few things that struck me though

1. it can be caused by over exposure to meds like prednisone, which i was on for years for asthma growing up. i have been off it for years though.

2. a pituitary tumor can cause it. i use to have to get a MRi every six months because something in my blood test (heightened levels of prolactin--i know, how bizarre. i have never been pregnant) indicated a pit. tumor and they thought they found one on the film. later they said it didn't show up again so i must not have it. ??? ok, i thought, i guess that is good.

3. this is a bit embarassing but i have always wondered why i have so much embarassing hair on my chin. i have to pluck constantly or i look mannish. my arm hair is equally embarrassing and my legs can get down right frightening. very course, dark and THICK. YIPES! i need to buy my own salon!

this has all really got me thinking. is there something larger at work here? am i just doomed for fathood forever? i am stunned i haven't lost any weight really. especially considering how little i am able to eat now. it is simply unworldly. now i just have to get over being so shy with my doc. or actually, i should probably just get a new one. *sigh*

thanks again for your help!!!

vinesqueen · March 23, 2006

Okay, Angel, that prolactin, that's a sign of cushing's as is the tumor they saw!

http://cushings.invisionzone.com/index.php? is the address for a cushing's support board. I'm finding it very useful, if a little confusing at first. It uses a different board structure there. LOTS of good information there.

There are several blood and urine tests that need to be done. Did they do any follow up tests?

I know that from what I've learned on that board is that it is hard to diagnose it, because there are several forms it takes.

As for cortisol testing, push for it!

Marimaru · March 23, 2006

It's a bit irritating to me that so many people are having to tell the doctors what to look for, what tests they want run, etc. I'm all for being your advocate, but whatever happened to "doctor knows best"?? All I got from my doctor is "walking isn't good enough exersize to lose weight, you need to do something harder than that", which I've since started doing, but it was like a straight kick to the gut when she told me that. I'm looking for a new doctor now, which is a pain, but geez.

vinesqueen · March 23, 2006

I'm right there with your Sarah! It completely sucks that we have to be more educated than our doctors. But when I was first diagnosed with asthma, I had a young doc fresh out of medical give me the best advice - he told me that I would have to become an expert in my body, that I would have to know it inside and out, that I would have to become an expert in my asthma since I have to live with it, or die.

So, I've taken that same approach to the Cushing's.

I think part of the problem Sarah, is that we are not responding like we should. That because it is sooooo far out of the ordinary that docs aren't used to dealing with special folks like us. They see patients for what? 5 or 10 minutes and send us on our way. They don't, won't, can't take the time that it really requires to really understand the problem.

But that's why we have to PUSH for answers. We have to be the squeeky wheels, we have to get the attention we NEED not just want.

Metabolic disorders are really rare, so when doctors are presented by a bonifide Turtle, they jsut don't know what to do with us. We present a problem they don't know how to treat, because we don't respond the way they expect. Cushing's is thought to occur in .001% to .0025% of the population. TINY little number. Most endocrinolgists don't even see a Cushing's patient, so how can we expect to get the best care from a general practice doc?

michelle15 · March 24, 2006

I think that the hardest thing in the world is to be a new bandster and to be a turtle when your mom, who had the surgery a couple years ago, is a rabbit. Ouch. I don't think that she will ever understand that I am just a struggling turtle trying to win the race. : P Oh well.

vinesqueen · March 24, 2006

Hi Michelle!

My husband was banded before me, and lost about 180 pound his first year. Yes, that's right, one hundred eighty pounds. Since April I've lost a total of 15 pounds.

I want you to keep your chin up Michelle! You never know, you might turn out to be a rabbit once you get your fill level right for you! (keeping my fingers crossed for you.)

3 pounds in 3 weeks is not bad! Not by a long shot. I know, however, that it can be very, very difficult when you compair yourself against a rabbit, or when other people compair you against a rabbit. I also know it is nearly impossible to not compair your weight loss journey against someone else's.

But keep in mind that we are here for you, Turtle or Rabbit or Normie!

Now you just have to build some good bandster habits and you will be golden!

LilAngel · March 28, 2006

It's a bit irritating to me that so many people are having to tell the doctors what to look for, what tests they want run, etc. I'm all for being your advocate, but whatever happened to "doctor knows best"??

Well said! This is exactly what I was thinking on Friday when I was prepping myself for my doc's appointment. i was literally studying everything I could on the Internet and all the stuff that Vines posted on Cushings. I thought, "What the heck? Shouldn't he know this stuff?" BUT WAIT!!

I went with all my knowledge in hand, lots of self pep talks , all the encouragement i received here, and a speech ready to give and you wouldn't believe the differnce in this appointment and my last. My doc listened to me and had an intelligent conversation. :clap2: Weird. very twilight zone. he even siad -- and THIS IS AN ALERT FOR OTHERS -- that i may have a milder case of Cushings, that does not mimic the sterotypical signs (ie.weight gain around face, BP problems, etc) So for those who think, that can't be me because of this symptom or that, you never know! PUSH PUSH PUSH!

Currently we have decided to just increase my thyroid dosage and see how that does, but he said i should be able to tell the difference in a month. if not, he will test my cortisol levels. just like that, he agreed. anyway, i hope the thyroid bit works, but i guess we'll see. i am glad i went though, because they told me my thyroid was normal and left it at that before. turns out, it was at a very high point in the "normal" range.

anyway, thanks again for all the encouragement. i will keep you posted.

Kryssa · March 28, 2006

Well...the results are in (2 weeks ago, but I'm slow:paranoid ). My thyroid is on the low side of normal. But! My doc said it might not be normal for me, so how about some supplements? What?! No medications, just supplements: guggelsterones, L-tyrosine, and forskolin. I'd never heard of either the first or last. They are supposed to optimize thyroid function without replacing it. Ok, so I did an internet search and found a product that had all three in the recommended dosages and potency: on a body-building website! I kept reading, while thinking my doc must be a quack , and realized I might have some very similar goals to a body-builder, i.e. to lose body fat and gain muscle. So I ordered the supplement and have been taking it for a week. I'll let you guys know if it helps. :noidea:

LilAngel · March 28, 2006

Wow, Kryssa. I never heard of that stuff. Now when you say the low side of normal, do you mean the function or the TSH? OR did they even tell you? Just curious. and yes yes yes, keep us updated. If something like that will help, i would defintely be interested. forgive me if you said this before, but what other tests have you had done? what about your coritsol, like vines was explaining? have you had that? just curious. remember, you DESERVE answers. YOUR HEALTH (emphasis on YOUR) is important. just as much as any one, large or small. got it, girl? (And I mean that lovingly )

Kryssa · March 28, 2006

The hormone is a little on the low side of normal... something about T3. Cortisol is slightly elevated, but well within normal, and I'm working 60 hours a week right now during tax season, so it's a normal response. I also had my resting metabolic rate done. They said it's about 1900 calories a day. Hahahahahahah! If I ate that much I'd gain. I don't lose on 1400 even with plenty of exercise. Ah, well, like I said, we'll see...