Re: I'm new. Looking for information.

January 20, 2007

let's see... I went from living life in the fast lane at 19 (fast lane meaning having a full time job 40+ hours a week and a steady healthy life) to being bed bound and not working since 2001.... I completely understand your frustration. You are not alone. I too went through that 'but you don't look sick'.. 'why can't you just get a job or work'... but they didn't understand. But here Judy, we do.

Don't give up, never give in and allow yourself to settle. Never buy into the illusion that you are the black sheep or the joke or the loser, freak or wierdo. You are sick, that means there is something medically wrong with you that needs fixing and over time will be. That does not mean you are broken, dead or without spirit.

Never let anyone tell you that you are not worth it. You will decide exactly what goes into your health care. You will be on the pulse of it and will know immediately how to figure out what is wrong so that you and your docs can fix it. Sometimes they will be able to tell you what is wrong, sometimes you will be able to tell them what is wrong. Either way, you sound like you are on the right track.

Congrats to being on your way to living healthier and reclaiming yourself through this process!!

I'm new. Looking for information.

Hey everyone!

I have been sick for a number of years. Finally got diagnosed last year and received RAI in May of 06. It's been Hell! I CANNOT BELIEVE how horrible I have felt!!!!!!

Can't get out of bed in the morning, hurt everywhere, can't see straight, brain function is, I am guessing at about amoeba level. I have hypo and hyper symtoms at the same time. I am able to do only basic, survival type activites - going to the grocery store, fixing a meal, bathing ( smetimes!) and geting to the doctor when I have to.

I haven't been able to work for an entire year!!! I am very interested to know if that is common. It has been a source of great shame, not to mention financial ruin. I used to care what people (family) thought of me for not working but have long since decided that if they don't understand, it's their problem and not mine. I am now taking 60mg of Armour. It's not enough! So I have managed to aquire some xtra and found that 90 mg makes me feel a little better. Hopefully, better enough to go back to work!

However, I have found, as most of you have, that labs do not tell the real story. At first I was on a small amount of synthroid and got a 3 month lab result showing TSH of 16. A doctor I saw (not my endo) told me that I'd be fine if I would get some excercise.

Not working means no insurance for me now so I am going to the local teaching hospital to see an endo who is 100 miles away. They really aren't interested in gettingt labs any sooner than 3 mos between. that means 3 mos. of agony and not knowing if when my labs ARE taken he will see fit to give me more meds or not. I am finding that I have to be prepared to take care of my own needs.

This was the great revelation I found when I entered this room. It IS POSSIBLE to take care of yourself if you can find a way.

I cannot tell you how greatful I am for this knowledge. I don't think I would ever have arrived at that on my own, Doctors have done a real good job of convincing the world that they are the only ones worthy to decide what's good for us, and, since they control the perscription pad, we are at their mercy,

Anyway, I know I cannot afford to wait for this or that doctor to help me. My life is a trainwreck! Years are passing and there aren't all that many left for me.(I'm 57)

If someone in this room could tell me how long one must go without one's meds in order to asure low labs I would be ever greatful. I have an appointment of the 25th of Jan. It's only five days away. I am hoping that I can get by with quitting a day or two ahead because if I stop sooner I won't be able to get to the doctor anyway. I will be unable to drive.

Again, I would like to tell you all how wonderful it has been to be able to read alll your offerings. It is sooooo comforting to know I'm not some kind of looser and I am not alone.

Need a quick answer? Get one in minutes from people who know. Ask your question on Yahoo! Answers.

January 20, 2007

I am now taking 60mg of Armour. It's not enough! So I have

managed to aquire some xtra and found that 90 mg makes me feel a

little better. Hopefully, better enough to go back to work!

> However, I have found, as most of you have, that labs do not

tell the real story. At first I was on a small amount of synthroid

and got a 3 month lab result showing TSH of 16.

Lets start with some basics..

TSH range is roughly 0.45-5..although it is reccomended that TSH be

below 2.5 for the high end and once diagnosed with a thyroid

disorder TSH should be kept below 1..

TSH is a thyroid stimulating hormone, it is not a thyroid hormone.

Your body tells the pituary gland to add either more or less

hormone. The pituary gland then sends out a signal called TSH to the

thyroid to either step up production or slow down production.. with

a TSH of 16 your body was screaming for more hormone..but because

RAI destroyed your thyroid gland it is unable to produce..

Your thyroid produces 2 main hormones..most of it in the form of T4

and some T3.

T4 is considered the storage hormone, T3 is the active hormone.. the

body then converts T4 to T3 on a as needed basis..

Synthroid is a synthetic T4 only medication.

Armour is a natural( pig) form of T4 and T3 hormone..most controvery

regarding Armour comes form the ratio of T3 /T4 being 25:100 while

the jury is still not decided on the human ratio but it tends to be

14:100.

Having had RAI, you need to be on full replacement, depending on how

much of your thyroid is still functioning.

Now this is only a guideline but the Synthroid manufactuer

reccomends 1 mcg per lb..you did not post your Synthroid dose but

said it was low..

Armour equals 38mcg of T4 and 9 mg of T3 per grain or 60 mg..so you

were on 38mcg of T4 and 9mg of T3 and have raised it to 57mcg of T4

and 13.5mg of T3..now T3 is the direct hormone you feel..this is why

you are standing..

Basic guidelines.. T4 takes 6 weeks to build up in your body.. you

want labs every 6 weeks.. look at the T4..is it still in range? How

do you feel? Do you have room to move up? Dose increase, labs in 6

weeks..continue this until either you feel great and labs or good or

until your T4 goes above range..now look at the T3..has it been

moving up with the T4 or is lagging behind( conversion issues) ..

Synthroid is t4 only

Cytomel is T3 only

Armour is combination T3/T4..

For some Synthroid alone is great..others need Armour and others

need a combination of all or two of the above..it all depends on how

you feel and what works best for you..

But for now you need to get your T4 at the high end of the range and

your TSH below 1..then you can work on the fine tuning..

Do realize hormones especially estrogen etc. bind T4 and T3 and to

account for this you want the T4 and T3 measured in the Free

versions so that you get a real reading.

If the doc only orders TSH then ask him why you are on T4 and T3 (

armour) medication and he does not want to test your T4 and T3? ask

him if he would treat anything else( diabetes, bloodpressure etc. )

with out testing the actual levels first?

Kats3boys

January 21, 2007

Hi Judy.. Nice to meet ya...

It is pretty awesome to finally find someone that understands... I went for more than a decade all alone... no one around me 'got it', heck, they still don't... but everyone here does.

What was your diagnosis last year, why did they take your gland?

I had RAI, too... to stop thyroid storm.. they over dosed me..and killed off the whole gland... not much fun.

60 mg, 1 grain, is a small dose, so my first guess is that you're being underdosed which fits exactly how you are feeling.

Do you have copies of your last labs, with ranges, so that we can see what the doc has been testing and what he's basing your dose on?

I was pretty much abused by my docs... whole long story so I'll skip it... I ended up in chronic pain, couldn't get a decent job, lost my house and needed crutches to walk, lost my last job that included benies when I couldn't walk anymore, then lost the insurance... all the while with them telling me how it was all in my head, I was lazy, I didn't exercise enough.. the usual BS they tell us.

I was about three years with no meds, and no gland, when I got online and started learning.... I learned enough, and was desperate enough to start self treating.. that was 4 1/2 years ago. I got a LOT of my health back... and didn't need crutches anymore... so, for me, that proved that it wasn't my not having a thyroid gland anymore, and had nothing to do with what I ate or how much I didn't exercise.. it had to do with the hormones.

For me it was the type of hormones. The docs, for all those years, with all that decline in quality of life, would prescribe only synthetic T4, and not enough. One just a low dose of natural thyroid I started seeing improvements quite quickly. Moral to the story... find the type of replacement hormone that works for YOUR body (synthetic, natural or even a combo) get the levels up where you need them to be to feel well... and you will be a real person again, and not just of the walking, screaming in pain, dead.

Not having insurance is rough, not having an income is rough. I still haven't gotten out of the pit that I ended up in after everything in my life went belly up... but at least I feel better than I did all those years ago.

As a self treater it takes a very very good understanding of the chemistry involved with the hormones and the meds and a lot of discipline. Just because you have the pills in front of you, you can't just start jacking up doses and stuff cuz you want to. It has to be done with an understanding of when and how to adjust dosages.

Not to scare you, just want you to be aware of that kind of stuff.

This last summer it became nearly impossible to get our med shipments, for those of us that self treat (if anyone has been getting shipments, please let me know off list topper2@... I want to see what has been getting through, mine were all stopped). I ended up running out of meds and, combined with short dosing for many months before that, I ended up backsliding.. that SUCKS.. but... it also shows me that the relief of the symptoms are directly related to hormone levels... not exercise, not attitude, it's the hormones.... as my levels are coming up just a wee bit at a time, my body is adjusting again....

You have five days until labs.... skipping meds from now til then wont' kill you... might make you feel pretty crappy.. but you can pick up again after the blood draw. If the doc is only testing TSH though, the labs may not show much of a change from having stopped. TSH has a slow rate of change in response to hormone levels, that's why it's best to wait at least 4, better 6, weeks between labs. If they are saying that a TSH of 16 is okay, chances are he's too dense in the thyroid care department to be checking the thyroid hormone levels.

There are foods that bind with thyroid hormones, and, in theory, might bind with enough hormone to skew lab results... but only if he's testing thyroid hormones, if he's only testing TSH, it won't help.

TSH isn't a thyroid hormone... it's a pituitary hormone and doesn't have much value as a tool for someone already on meds, especially when they have little or no gland function left.

If you live in the US, you might have a clinic closer to you than that doc that can run labs for you. You have to pay out of pocket, you can go to a participating clinic for the blood draw and the sample is then shipped of to California for analysis... you can get the results in three days, and the hard copy comes in about a week.

With those numbers you can get a better pic of how you are doing on your own..... and it just might be cheaper than what the doc you are now seeing is charging.... depends on how much of a mark up he's getting. Ordering your own labs, for any of us, allows us to get the RIGHT tests done when we want them done instead of cow towing and begging for a doc to order the right ones.

The link for this is: www.healthcheckusa.com

Anyway.. that gives you some info to get you started thinking some more on options and strategies.

Topper ()

On Sat, 20 Jan 2007 18:04:04 -0800 (PST) judy tiernan writes: