Please put this into layman (or womans) terms

[moojy]

I am a 56 year-old female.  Complete hysterectomy in 1982, otherwise great health.   A few years ago I was told I had an enlarged thyroid.  I was told not to be concerned about it.
Experiencing symptoms of hair loss, brittle nails, hunger, irritability, fatigue, excessive sweating, heat intolerance, insomnia and high blood pressure.  July 2007 I had a free T4 of 1.08 and TSH of 5.3.  Antibody tested high.  Ultrasound found nodular thyroid.  Right nodule in the mid/lower pole measuring 2.8 x 3.1 x 2.3 cm and the left mid pole nodule measuring 3.3 x 1.4 x 2.4 cm.   Left dominant nodule non-functioning.  Right dominant nodule functioning normally.  Neither is a “hot” nodule.
I was sent for a biopsy.  The first biopsy did not show any thyroid tissue.  Sent to another place to have another biopsy done.  The biopsy showed no thyroid components identified.  
Despite having 2 biopsies done, neither biopsy showed enough cell matter for the pathologist to render an opinion.  How one can do a thyroid biopsy and not get any thyroid tissue?
Since nothing was found, this Dr. felt I didn’t need any medication and told me to come back in 6 months.   I was very disappointed because I was still feeling miserable.   When I tried to contact his office, I was told he is rarely in his office, as he prefers doing speaking engagements instead of seeing patients.  (sigh)
So I recently found another Dr. who sent me for blood work.  Here are the 2008 results:
Thyroid Stimulating Immunoglob218/ T4 Free, Direct, S 1.03/ TSH 6.578 /T3 185/ TPO Ab 381 /Antithyroglobulin Ab 8250
After he got my results, his nurse called saying wanted me on medication immediately. I was given 50000IU Vitamin D weekly and 50mcg Levothyroxin daily.   I have another ultrasound sound next week and it will be another week or two before I get in to see the Dr. for all of his results.  I have no idea what all of this means.  I have to wait weeks until I go in to have it explained.   Can you shed some light on this for me?

[AR-10]

RAI is RadoiActive Iodine.

There are a couple of different forms.

One type of of radioactive iodine is used for certain scans to check thyroid activity.

One type is designed to kill thyroid tissue. My gland was given a dose large enough to kill it. That is called RAI ablation. This form of radioactive iodine is also sometimes used on thyroid cancer patients, to kill any remaining tissue if the thyroid is totally removed.

When the thyroid is totally removed surgically, there is always remaining tissue, because the thyroid grows around the vocal cords. To get all the thyroid out, the vocal cords and other nerves in the area would be destroyed.

So the surgeon removes as much as possible, and then RAI is administered to kill any remaining cancer cells.

[moojy]

Excuse my ignorance, but what exactly is RAI?

I am slowly learning all of the acronyms and recently found a whole page of them, but that one was not defined well.

[AR-10]

I made one error in my last post that needs correcting. I may have made several, but I see the one. LOL!!

I wrote "Thyroid Stimulating Hormone (TSI) is an antibody that has an upper limit..."

That is incorrect. I meant to say "Thyroid Stimulating Immunoglobulin (TSI)..."

Thyroid Stimulating Immunoglobulin (TSI) is an antibody.

Thyroid Stimulating Hormone (TSH) is the hormone that tells your thyroid how much T4/T3 to produce.


Good luck with your RAI, Debbie. I had RAI in January. Buy some sour candies to suck on for a couple of days.

[Smilerdeb]

Well done  AR-10...couldnt have explained it better myself.
It looks like moojy has BOTH blocking and stimulating antibodies with Graves.
I too am a Graves Sufferer but suffer with HypeRthyroidism (overactive) which has been unsuccessful in treating with anti-thyroid drugs so RAI is scheduled for me in 2 weeks time (surgery has been denied due to health problems).Keep a track of your Labs, your symptoms as they are a good way to tell whether you are going HypO or HypeR.
Very little that I know with Graves achieve remission (Euthyroid) where FT3, FT4 and (TSH are all within range and no symptoms.

Every person is different with the symptoms.....
I have gained weight (14kgs) and never lost it though being HypeR you are supposed too.

I also had massive swelling of the feet at the beginning when Hyper.
I had anxiety, heart racing, fast pulse, hair loss, excessive bowels movements,ridiculous thirst and an apeatite that would put weight watchers to shame lol.
When HypO I have no metabolism, sleep a lot, hair loss, weight gain, sluggish bowels, and very teary.
So dont always think weight gain is Hypo...sometimes the symptoms are the same but I found my heart rate slows down and I have sluggish bowels with no metabolism when HypO (underactive).
Hope all this helps.

Regards
Debbie

[AR-10]

Where bad antibodies come from is your immune system, which has developed a glitch. Some DNA has been corrupted or something (I'm grasping a little here) and your immune system is making antibodies against your own body as well as the antibodies for foreign invaders.

There are all kinds of bad antibodies for lots of different autoimmune diseases, and your immune system has decided your thyroid is a foreign invader. So it is trying to repell or assimilate it. Sometimes the antibody isn't designed to destroy the gland. Sometimes it is designed to just mess with the function of the gland.

Close to 90% of the population has certain antibodies in very low numbers. The upper limit for TGab is 20. The upper limit for TPOab is 40. That means it is not unusual for a person to have a TPOab of 20 and never develop any autoimmune disorder.

What causes antibody levels to be high or low is not well understood. They just do what they want to, to a certain degree.

When an antibody count goes over 300, it starts to do it's job to a degree that it affects the gland. 300 is not a number set in stone, but my point is, a TSI or TPOab of 100 is not significantly active. As the numbers get higher, damage is inflicted or processes are disturbed.


Thyroid Stimulating Hormone (TSI) is an antibody that has an upper limit of "normal" range somewhere beteen 20 and 50, I can't remember, and your lab may be different, anyway. But it somewhere in that range.

It immitates TSH, and it attaches to TSH receptors in the thyroid gland. When the numbers get high enough, they flood the TSH receptors in your thyroid and tell the receptors to send signals to make hormones. Then your thyroid goes into high gear and doesn't shut off. Your TSH drops very low, and your T4 and T3 hormones go very high.

Too much T3 speeds up your whole body, and you go hyper and start having heart problems and digestive problems and emotional problems and weight loss problems and the list goes on.

That is Grave's disease.

TPOab attacks the thyroid directly, killing it cell by cell, literally. The result is a swollen gland that is irritated, and if it is damaged enough it gets infected areas. Thyroiditis is a swollen irritated gland, mildly infected. The antibodies are trying to eat it. It slowly impedes the function of the gland, and the thyroid cannot make enough hormones to keep up.

If the thyroiditis is severe, it can suddenly start spitting out stored hormones irratically, and you go from hypo to hyper for a while. The infection goes down and the gland returns to under producing and you go hypo again.

TGab is Throglobulin antibodies, or antithyroglobulin antibodies. It has two names. TPOab has four names, but I'm not going there.

Thyroglobulin is produced by cells in the thyroid and it is used to make T3 and T4 hormones. Thyroglobulin antibodies destroy thyroglobulin, and there is less to make hormones with. Less raw materials, less hormones produced, you get low on hormones and that makes you Hypo. Your TSH goes up to try to get the thyroid to get busy, but the thyroid is not able to meet demand.

You've got three things going on at once, to one degree or another. The nodules are a result and also a fourth complication to your disease.

The ultrasound next week will give you more answers about that. Possibly a successful FNA, although I hate to mention it.

Antibodies over 1,000 are very signficant. You TGab is bothersome. It will not harm other organs directly, but it is doing a lot of damage to your Thyroglobulin. You are lucky you caught it early. Your hormones could be much lower.

I keep telling you you have Grave's, and you do. But it would not surprise me if you are diagnosed with Hashimoto's, because the antibodies doing the most damage are the TPOab and the TGab. Those two antibodies along with low hormones and high TSH and nodules are CLASSIC Hashimoto's indicators. The TSI may get swept under the rug, as inconvenient. But the TSI isn't going away.

You may have Hashimoto's and Graves. The high TGab is making a mess of it.

[moojy]

Wanted to also add that at times my voice gets hoarse.  Other times I can feel a burning in my neck.... then it goes away.  Other times it's just a throb.  It all comes and goes, never staying.  But I do hate anything around my neck or against it.  

[moojy]

You mentioned that I have lots of antibodies.  Just how did I accomplish that?  Where did they come from ?  My Tgab is very high at 8250....why is that?  
Where does this auto-immunity come from?  

Silly questions perhaps, but I just don't understand how I can go from being healthy to having all of this was going on inside me.

You said I don't have full blown Graves yet.  What would make it go into being full blown?
Is my body being a bit contrary?  Or am I?

[AR-10]

Yeah...big needles. :P

Do Not Want!

I have to ask though, why would you let a Dr. with THAT name come lunging at you with a big needle????

OH...I get it...

I saw him once, only he was playing a surgeon that day.  :-)

[moojy]

Ask and ye shall receive.  Wow, that's alot of info!  Thank you.  I'm still re-reading it for comprehension.  You can bet I already have more questions.  I should be able to spend time typing them out this wekend.  

One thing I forgot to mention...The 1st biopsy was a nightmare.  The so called "Dr." kept asking the nurse how he should do the biopsy.  Right in the middle of it, when he started putting the needle in my neck, I asked him to stop because my neck wasn't numbed enough.  Instead, he kept pushing the needle in.  "Dr. Doesntknowshit" just kept on and told me to hold still.  

Yes, I went to the hospital administator the hospital to report the incident.

My second one was a breeze.  You can bet that I question anyone who comes near me now.  Espically if they have a big needle in their hands.

[AR-10]

After reading your post again, I see the symptoms you are feeling are a mix of hyper and hypo symptoms.

The Grave's antibodies may be having more influence than I thought. However, the TGab is driving the bus at the moment.

You will know more after the ultrasound and maybe another round of FNA tests.

The disease may be hard to control as you go along. The TSI is trying to drag you in one direction, and the TGab is saying "No, we're going to take a left!" If the TSI starts pulling harder, you may start switching back and forth, from hypo to hyper, which is very hard to regulate with medication.

[AR-10]

OK...

TSI is an antibody specific to Grave's Disease. If you test positive for TSI, you have Grave's Disease, although it may not be active.

TPOab is an antibody that indicates an autoimmune condition, and is found in both Grave's and Hashimoto's, and is also found in people who have no thyroid problem, but have some other autoimmune disease.

TGab (antithyroglobulin antibodies) can also be found in either Grave's patients or Hashimoto's patients.

Lets look at the 2008 tests.

TSI is 218 , above limit, so a positive test, but not a terribly high number. You have Grave's Disease.

TPOab is 381 ,  again a positive test, but the number is not extremely high.

TGab is 8250 , a VERY high number.

You have three different autoimmune antibodies in high enough numbers to be significant. Your TGab is extremely high, and is dominant at the moment.

TSH is 6.578, which is high. Not alarmingly high, but high enough to indicate you are low on T4/T3 hormones.

Your TSH should be closer to 1.0 or 1.5

Free T4 is 1.03 not bad, but could be a little higher

Free T3 is 185

Without the lab ranges (high/low) used by the lab that ran the tests, it is hard to comment on your Free T4 and Free T3. They are low, but not extremely low. That is a safe guess based on your TSH test, and the fact that you were put on hormone replacement medication (Levothyroxine).

As the Levo starts building up in your system, your Free T4 and Free T3 will rise, and your TSH will go down closer to 1.0.

Here's what is going on;

You have several nodules.

You have lots of antibodies.

You have Grave's Disease, but it has not developed into full blown Grave's Disease. You don't have symptoms of Grave's, because your TGab is so high, it is slowing the production of the hormones T3 and T4.

So even though you have an autoimmune disorder that should be making you Hyperthyroid, you are hypothyroid because of the TGab making your thyroid unable to produce enough hormones.

It sounds confusing, but I am trying to keep it as simple as possible.

I won't comment on the nodules, because I don't know that much about them.

Read this over a few times, and then ask questions. Other members can help as well, and I'm sure some of what I said doesn't make any sense.