A silly place filled with caffeine induced ramblings of this person named KarmaGirl....or something.
my personal hell......
Published on February 11, 2004 By KarmaGirl In Misc
There are many people who don't even know what a thyroid is. Well, it's a gland that sits in your neck and regulates your metabolism.

Most people think of your metabolism in the terms of if you are naturally skinny or fat. But, that is just a little bit of it. Your metabolism effects your energy, skin, tolerance of cold, and many other things.

So, to get a little more technical about it:

Your thyroid is part of your endocrine system. Your endocrine system is basically all the glands/organs in your body that produce hormones. If one of these glands/organs starts having issues, your whole system goes wonky. (I could go into the details of the endocrine system, but I'll save that for another day...)

So, back to the Thyroid itself. What does the thyroid do? Well, thyroid hormones affect who you use of foods (carbs, protein, vitamins, etc.), electrolytes, and water, and it also regulates your immune response. It also has (as mentioned above) an effect on how other hormones are used in your system. This is why every woman who is having issues conceiving should have a thyroid test done. People with certain thyroid disease are also more likely to have auto-immune diseases (such as lupus...which I am very in touch with) and diabetes.

So, the thyroid is a very important organ. One that can turn your life around if it goes bad.

My personal story? It went bad. By age 17, I was being treated for Hyperthyroidism (too much thyroid hormone in my system) and started taking a Synthetic hormone to regulate it. The problem with that was the extra hormone was being caused by a nodular growth on my thyroid. This growth then caused the whole glad to swell (this is what they call a "goiter"). I ended up having a lobectomy to remove that particular lobe of the thyroid. (The thyroid is broken up into lobes, but you'll never need to know that much detail unless you need thyroid surgery).

So, after the first surgery, I turned Hypothyroid (not enough) and started a new dose of synthetic hormone. By this time, I was 18 years old. I had to have multiple aspiration biopsies (think large needle probing in your neck) and it seemed like I was always at the Doctors office. Finally, a few months ago it got to the point that the gland was so big that it felt like somebody always had their hand around my neck. I would wake up in the night coughing, and I had trouble swallowing even small pills. It was time to get it out. So, I went in and had the whole thing removed.

Of course, this surgery was worse than the first due to scar tissue, and the fact that they were removing all the lobes. i had to go through a bunch of tests before surgery. One of which was testing my vocal chords. Your thyroid falls on top of nerves that run to your vocal chords. If those nerves are damaged in surgery, you won't be able to talk. Pretty scary stuff....though some people may have liked it if I would shut up Anyway, the other scary thing is the parathyroid glands. They aren't part of the thyroid, they just connect to it. If they are damaged in surgery, you will have calcium issues. You can't live without calcium, and you could die quite quickly if they were all removed. So, that was all pretty scary, but it all worked out and nothing bad happened.

So, now what? Well, for the rest of my life I will be on replacement hormone. Seems simple, right? Wrong. I have been on Synthroid since the operation (which is what I have been on for the past 14+ years). Unfortunately, even though my body was happy with it when I still had a thyroid, it's not happy with it now.

Why is Synthroid different? Well, Synthroid is the same as most of the thyroid replacement hormones out there. *Most* people function just fine on it. i am obviously not most people. Synthroid, like most of the replacements, is a replacement for Thyroxine (T4). The problem is- the thyroid gland also produces another hormone in a ratio of about 4:1 (T4 being the 4). That other hormone is: L-triiodothyronine (T3). Since most people function just fine with T4 alone, they typically just put you on it. From what I understand, T4 has a half life of 3 days, so it takes 6 days for it to totally be out of your system. T3's alf life it 12 hours, so you have a more normal "up" time along with the consistency of the T4.

I have now been switched to a new thyroid hormone replacement called Armour. It's a good thing that I am not a devout vegetarian, or I'd have serious issues with it. It is basically processed pig thyroids. Yep, that tasty pork that you ate for dinner is providing me with a healthy balance of thyroid hormone. I am now setting up a shrine for pigs and will pray to them daily. The difference between the two replacement hormones is amazing. After one dose of Armour, I could see a difference. I am much more alert, not as cold, and not sleepy. Hopefully this will finally solve my thyroid issue. We'll see what the next few courses of blood work show, but I feel really hopeful about this!

Comments (Page 1)
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on Feb 11, 2004
Sounds like good news. Hope it works out long term!

The pig thing struck me funny because my son's 1st grade class is celebrating "Pig Month". They are making piggie shirts, pig snouts to wear and they are going to eat sundaes from a trough. I will think of you whenever he wears his piggie shirt
on Feb 11, 2004
Hi KarmaGirl_I'm going through testing now for similar symtoms ( goiter or multi nodule blablabla). The endocronologist has me going to a dietician and ear,nose throat dr. I don't believe in coincidences but found reading your blog today real helpful. Like you said it feels like a hand around my throat. It's good to hear you found a replacement hormone ( oink,lol.) that works for you.
Take care_
on Feb 11, 2004
Nice lesson. I hope it works for you, too.
on Feb 11, 2004
Thanks for the responses.

E. Macy, I hope things work out for you. Unfortunately, if you have a multi-nodular goiter, the only real solution is surgery. They can aspirate the nodules, but once they start growing, they keep popping up.

You can use me as a sounding board if you need. I feel for anyone going through this. It really ends up effecting so much of your health.
on Feb 11, 2004
Sounds like a terrible experience. I hope you are going to learn soon how to deal definitively with that and start to live with a "free" mind.
on Feb 11, 2004
JEPEL, how do you learn to deal with something that changes all the time? I guess I don't understand what you mean.

Trust me, if you knew even a fraction of what I have been through (I also have Lupus, which I have had since I was a teen) you would be amazed that I am positive as I am. I just take life as it comes. Not much else you can do with it.
on Feb 12, 2004
"I am now setting up a shrine for pigs and will pray to them daily." I love this line. I'll pray for you too.
on Feb 12, 2004

(I'll edit that initial response#$%^&*lol.)

....Thanks Karma Girl...Drs. never tell you the whole,story. I take a certain medicine that supposedly (can) trigger this multi nodule goiter, do you think by stopping with it the swelling can reduce? Or is it once they are there you are stuck with them. I have my thryroid tested regularaly ( TSH screens) I won't have a diagnosis from the internist till half March
Surgery hasn't been mentioned as an option...and aspirating_what does that do? Yikes I hate %^&* needles. Thanks for your sounding board on this_ you sound very positive and quite young to have these "challenges" to your health. You say you have Lupus too?
again...THANKS for this info. MOnday it's off to the ENT.
on Feb 12, 2004
I was just hoping that you will reach a stationary state of your disease soon. Enjoy life as much as you con is a good way of handling that
on Feb 12, 2004
E.Macy, are you on a thyroid hormone replacement right now? One of the ways that they can reduce the swelling is by trying to shut down a lot of the thyroid function by providing replacement hormone. That didn't help for me, but I have heard people that it helps with.

However, the nodules are a different thing. Are they sure that they are nodules? What tests have they done? There are two things that can happen that feel the same- multi nodular goiter and polycystic goiter. Each have their own issues, and can also happen together. I had cysts and nodules by the end of it all. Either way (not to scare you) there is always the chance that they can be cancerous. That is where the aspiration comes in. An aspiration biopsy will gather cells that will help them determine what the makeup of the tissue is. An ultrasound will show some info (like if the cyst has a lot of blood flow, which shows that it is active, growing, and a candidate for cancer). ASpiration can also drain large cysts/nodules so that they don't bother you as much. On the cancer side- as long as it doesn't spread to your lymph nodes, it's easily treated.

There is another thing that they try typically before surgery (which didn't help me, but it help many) which is radioactive iodine. What this does is basically kill most of your thyroid so that it will quit growing. They then give you replacement hormone. Your thyroid needs iodine to function and it gathers it like crazy, so it absorbs all the radioactive iodine and then the tissue gets killed off. It sounds nasty, but it really doesn't hurt. But, that didn't work for me, either.

In the end, once you start growing nodules, you probably will always have them. The medicine that you are on might be accelerating it, but you probably already had it started before you took the medicine. Even though your thyroid levels might be fine without hormone replacement, it doesn't mean that you shouldn't take it.

The thyroid typically enlarges due to needing to compensate. So, maybe it isn't functioning well enough, so it starts growing more tissue so that it can produce more hormones. Obviously, the more diseased the thyroid becomes, the larger it will grow. The doctors really need to take action for you so that it doesn't get too uncomfortable.

A lot of thyroid problems are caused by auto immune disease. You should also be checked for these diseases as they could change how you are treated. For instance, Hasimotos disease, which is an autoimmune disease of the thyroid. If you have this, then the real only solution is to have the thyroid removed because it will always be diseased. Whereas Hasimoto's will make you hypothyroid, Graves Disease will make you hyperthyroid. Graves is another autoimmune disease which makes the thyroid become "toxic". Surgery is needed if it can not be controlled by medication.

Not sure if any of that info helped at all
on Mar 06, 2004
Hi Karma Girl,

Armour Thyroid is the best!!! I have had thyroid cancer, so take suppressive does of Armour. For the past 4 years I have been taking 3-4 grains Armour Thyroid.

Changed doctors (new job) and both the primary and endo raised holy #*@@ that I was taking so much. Did all the tests, heart and bone mass, heart is normal and I have gained bone mass!

You may have had the same problem as I, as I couldn't convert T4 to T3 readily, so Armour is perfect!

I am happy you feel good . . . finally, huh? I remember those days, months, years too.

on Apr 07, 2004
Have a Multi nodule goiter... Part cystic and part solid. Found it on Oct. 19, 2003. Been trhough all the tests! Decided to skip the FNA and the doctor is scheduling surgery for me. They will test it for cancer after removal. I'll let you know how it goes.
on Apr 07, 2004

Kia, I totally agree that Armour is *so* much better.  I'm on total replacement (since I don't have a thyroid) so this change has made a world of difference.  I just wish they would have done it sooner!

deb, hope everything goes well for you.  Typically, multi cystic nodular goiters are not cancerous, and thyroid cancer is extremely treatable when caught when it's only in the thyroid.  I hope that makes you feel a bit better.  There is a test that you may want to have done before you have surgery.  It's just a simple test to make sure that your vocal cords function correctly.  The nerves that control your vocal cords can be damaged in surgery.  If they test them first, they can make sure that you don't already have any damage to them.  You wouldn't want to walk out without a voice.  Just ask your doctor to see if they see it as a concern or not.  I found it to be a bit of peace of mind.

on Apr 07, 2004
My wife has been on the synthroid for years. we had a terrible situation occur when our daughter was 3, seems those little red pills
were tasty......She took appox 30, and her heart rate at rest after 24 hrs was around 140, poison control had no idea what to do for overdose, ended up strapped to a monitor for a week before her heart rate went down ( maxed at over 200 ), since then her growth has been extreme ( close to 5 ft tall in 3rd grade )her thyroid has been fine , but she was diagnosed type 1 diabetic last year.

Oh, the meds were in a cabinet, child proof cap in use, she showed the ER doc just how to remove the cap.....

I'll tell my wife about the Armour, she still drags around, and has no energy ( levels tested 6 mos ago, still remain steady )
on Apr 07, 2004
Dynosoar, I'm amazed that they didn't know what to do with an OD of synthroid.  That is kind of scary.  (Why didn't they pump her stomach and give her a laxative).  My doctor actually instructed me as to what to do if my daughter ever got a hold of it (luckily, she hasn't....and Armour smells so bad I don't think she would want to).  But, anyway, do tell your wife about Armour.  My levels were fine on Synthroid but I still felt like a slug.  Armour made a world of difference.  I actually haven't ever talked to anyone who switched and didn't see an improvement.
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