# No Surgery :(



## ScaredAJ (Jun 3, 2011)

I seen a surgeon today about getting this little butterfly shaped gland removed. I was basically told, we will redo an ultrasound in 3 months, and if its larger we will do another biopsy, rinse and repeat! So there we have it thyroid fans, Gale is to keep this gland we all love to hate, and be poked in the neck every 3 months until they finally find cancer, or say its not growing enough to worry about.

I am so ready to give up. I can't keep doing this. My family needs me, they miss me, I'm surprised they still even know who I am. I feel helpless, and desperate, and like a hypochondriac, because the doctors can't see what's wrong with me. I don't even know where to start looking anymore. I am tired of hurting, and swelling (this week its my hands again). I'm tired of feeling like I have something stuck in my throat, and talking with my manly voice.

Everything points to me being fine, except how I feel. Sorry for venting its just so frustrating knowing that something is wrong (other than hashi's) and not having a clue how to fix it or find out what's wrong! I am attaching pictures of all my recent tests that say I am normal. Maybe someone will see something and be able to head me in a direction.


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## Andros (Aug 26, 2009)

ScaredAJ said:


> I seen a surgeon today about getting this little butterfly shaped gland removed. I was basically told, we will redo an ultrasound in 3 months, and if its larger we will do another biopsy, rinse and repeat! So there we have it thyroid fans, Gale is to keep this gland we all love to hate, and be poked in the neck every 3 months until they finally find cancer, or say its not growing enough to worry about.
> 
> I am so ready to give up. I can't keep doing this. My family needs me, they miss me, I'm surprised they still even know who I am. I feel helpless, and desperate, and like a hypochondriac, because the doctors can't see what's wrong with me. I don't even know where to start looking anymore. I am tired of hurting, and swelling (this week its my hands again). I'm tired of feeling like I have something stuck in my throat, and talking with my manly voice.
> 
> Everything points to me being fine, except how I feel. Sorry for venting its just so frustrating knowing that something is wrong (other than hashi's) and not having a clue how to fix it or find out what's wrong! I am attaching pictures of all my recent tests that say I am normal. Maybe someone will see something and be able to head me in a direction.


Well, thank goodness they have not found cancer cells yet....................; that is good news.

Apparently, they have identified Hurthle Cells indigenous to Hashimoto's? That is it the impression I get. But, there are Hurthle Cells indigenous to cancer as well so would you ask? Just to be double sure?

http://www.knowcancer.com/oncology/hurthle-cell-adenoma/

Hashimoto's Hurthle cells
http://www.pathconsultddx.com/pathCon/diagnosis?pii=S1559-8675(06)71549-2

Refresh my memory. Are you on thyroxine replacement? Have you had any of these antibodies' tests?

Understanding Thyroglobulin Ab.
http://www.labtestsonline.org/understanding/analytes/thyroglobulin/test.html

TSI (thyroid stimulating immunoglobulin),TPO (antimicrosomal antibodies) TBII (thyrotropin-binding inhibitory immunoglobulin), Thyroglobulin Ab, ANA (antinuclear antibodies), (thyroid hormone panel) TSH, Free T3, Free T4.

You can look this stuff up here and more.........
http://www.labtestsonline.org/

I share your concern. For one thing, you have to function and for another, you deserve to feel well and enjoy life.










When you stand in front of a mirror, take a drink of water. Tilt head back and observe. Can you see the goiter? They say no masses and you say you feel a mass. I believe you.

That is why RAIU (radioactive uptake scan) would be better. The radioactive material clings to all thyroid tissue in the body. Did you know you could have thyroid tissue anywhere like on the ovaries, lungs, heart, liver etc.? This is called ectopic thyroid tissue. Just a littel tid bit; I guess I feel like typing. LOL!!


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## Evernight74 (Jun 7, 2011)

In my opinion and what I have been through I think when we get diagnosed with a thyroid problem we think removal should fix all of our problems. Everyone exspecally Hypochondracs and others with anxiety problems hate and mistrust doctors. We become completely focused on the lump in our neck and when we dont feel right we blame it. Now I am not in anyway saying that it shouldnt be monitored or watched carefully but at some point you have to be able to trust the doctors and also be glad they arent just knife happy. Cancer is very rare and I think that what we tend to focus on is the big C... we wait for results to come back and we think that this time it will show cancer. People live with goiters their entire lives and it never turns out to be anything more than a lump in the neck. Thats the way I myself am trying to look at things. I am the first person to jump to its gotta be the worst thing possiable instead of looking at the odds that maybe just maybe I am of the 95% that will be just fine. Yes the poking and the ultrasounds and the waiting just completely sucks, but I have noticed that people on here always go to the cautious side and tend to think this test or that test, but in the end they never ease our minds because we will always wonder when will the test come back posistive or wake up and cant breath or swallow. I have lived my entire life with that worry and so many others and its time to take it with a grain of salt. Feel good that you dont have to have surgery..feel good that they are going to monitor it and see whats going on...feel good that with you having to go every 6 months that if anything in the slightest happens that your doctors will be on top of it and give you the best care. And remember to breath....its not always the worst case!


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## ScaredAJ (Jun 3, 2011)

I know, I feel like I am waiting for something to materialize for them to try to treat this. Hurry up and wait for cancer?

I do take 137 mcg of levo daily. 
I have had some of those blood tests done, and others I have not.

May-
Free T4- 0.8
TSH 3rd Gen 3.07
June 
ths 3rd gen 3.08

The others I have to ask for because she never did those. She did a million others but not the ones that matter huh? lol.

I can't stand being lethargic and that's all I am lately. I am stiff and sore and miserable and whiny (can't you tell LOL)

My doctor offered me the scan, but I would have to go with out my meds for 6 weeks. I can't do that I feel dead now, 6 weeks from now I will have lost my job, for sleeping! Is this the same test?


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## Evernight74 (Jun 7, 2011)

I take 175mcg of synthroid and sometimes I am tired and sore and cranky. But I have also noticed that a great diet and getting up and doing something even when you dont feel like it works wonders to getting back to feeling better. I have days where all I want to do is sleep and could careless about everything.. thank god my husband gives me a big old kick in the rear and gets me started again and it works wonders!!


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## Andros (Aug 26, 2009)

ScaredAJ said:


> I know, I feel like I am waiting for something to materialize for them to try to treat this. Hurry up and wait for cancer?
> 
> I do take 137 mcg of levo daily.
> I have had some of those blood tests done, and others I have not.
> ...


Your doctor can put you on T3 (cytomel only) for about 4 of those 6 weeks. I am surprised there was no offer to do that.

Even w/o the range intact, your Free T4 looks to be very very low so I am wondering also why such a healthy dose of Levothyroxine does not have it higher than that. Do you have the range anywhere for that FREE T4?

Yep; if I go to the doc w/ a cold, the first thing they want to do is a colonoscopy! Good grief! I have to say, "Are you going to treat me for my cold or not?" If not, just tell me and I will go elsewhere. I am not kidding; I do say that. It's because I have medicare. They see $$$$$$$$$ and I get mad. I don't go for that. It's a waste of precious funding. Sadly, not everyone shares my thinking. They just do what the doctor says.


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## ScaredAJ (Jun 3, 2011)

This weekend saturday and sunday i slept over 17 hours each night, and went back to bed 6 hours after waking up. I was also still too tired to get out of bed. It hurts to sleep that long, and with a history of blood clots being immobile for that long is never a great idea.

I do hope that removing it stops the situation I face. I just don't want to sit and wait for something catastrophic to happen either. I'm scared and confused, and just want to feel better.


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## ScaredAJ (Jun 3, 2011)

I do have the range for the T4 at the house on my night stand. I will get that later this evening when I return home.

I also gained back 25 of the 60 pounds I lost over the last 18 months.  So that has me all out of sorts too. I just know there is something more to this than Hashi. Cancer or not, I know there is something else wrong. You don't go from NEVER being sick, to this. I'm 32, I shouldn't feel like I'm 92. My mother died at 47. I plan on living a lot longer and happier than she ever did. so they better get to figuring me out!


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## Andros (Aug 26, 2009)

ScaredAJ said:


> I do have the range for the T4 at the house on my night stand. I will get that later this evening when I return home.
> 
> I also gained back 25 of the 60 pounds I lost over the last 18 months.  So that has me all out of sorts too. I just know there is something more to this than Hashi. Cancer or not, I know there is something else wrong. You don't go from NEVER being sick, to this. I'm 32, I shouldn't feel like I'm 92. My mother died at 47. I plan on living a lot longer and happier than she ever did. so they better get to figuring me out!


That's the attitude I like to hear! Just keep on keeping on. Sooner or later, you have to run across a doctor who gets all this.

I am so sorry for the loss of your mother. Waaaaaaaaaaaaaaaay too young to die; how sad.

Trust your body, trust your instincts.

Don't go to any trouble for that range; you have a full plate. I can tell it's low. Bless your little heart!! I know you are very careful with your diet; you should not have gained this weight back.

And by the way; that was extremely interesting to read all your cytology stuff. Thank you for sharing that with us.


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## bigfoot (May 13, 2011)

Another newbie here, but I don't think sleeping 17-18 hours a night is "normal". What did the doctor say about this? Nor is everything else you are going through and feeling probably "normal".

It's taken me a long road to get here, but I've gotta chime in and say, if you don't like your doctor's treatment, ask for an explanation. If this doc is refusing to run tests you're asking for and concerned about, he/she could at the very least explain "why not". If the explanation and answers you hear are not satisfactory, think about changing docs or getting a 2nd opinion.

Something is not right here, just need the right person to put the puzzle pieces together...

:anim_32:


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## northernlite (Oct 28, 2010)

Your TSH is too high for you. You are undermedicated. I felt well when my TSH was 0.82 and lousy when it was 2.02. I would feel terrible at over 3.0. You don't need your thyroid out to get your energy back, you need your medication adjusted. Even if you had it out and they kept your TSH at 3.08 you would be just as lethargic.

Start pushing your doctor for a trial increase in your levo and track your TSH and FT3 to find the place that you feel better. And if you can't get your FT3 high enough to feel well than you probably need to add T3 to your T4.


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## ScaredAJ (Jun 3, 2011)

Andros said:


> Your doctor can put you on T3 (cytomel only) for about 4 of those 6 weeks. I am surprised there was no offer to do that.
> 
> Even w/o the range intact, your Free T4 looks to be very very low so I am wondering also why such a healthy dose of Levothyroxine does not have it higher than that. Do you have the range anywhere for that FREE T4?
> 
> Yep; if I go to the doc w/ a cold, the first thing they want to do is a colonoscopy! Good grief! I have to say, "Are you going to treat me for my cold or not?" If not, just tell me and I will go elsewhere. I am not kidding; I do say that. It's because I have medicare. They see $$$$$$$$$ and I get mad. I don't go for that. It's a waste of precious funding. Sadly, not everyone shares my thinking. They just do what the doctor says.


found it

FT4 range .6-1.6 ng/dl
mine .8

hugs3


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## bigfoot (May 13, 2011)

Yeah, you're sitting about 20% with your Free T4. You have another 80% to catch up! 

1.6 - 0.6 = 1.0 point spread
0.2 (you) / 1.0 (spread) = 20% FT4

I had very similar numbers to yours last year and it was all I could do to drag myself out of the house or even make it to the grocery store.


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## ScaredAJ (Jun 3, 2011)

Yes! Its all the energy I have to go to work, and I have been messing up a lot lately because I am so tired and cant concentrate. I can manage to stay alert 4 hours at most, and that's with b12 pills, and as much caffeine I can swallow. 
When I have bad days I hurt all over, and flare up with pain. Its great to know that I'm not alone and not insane.

I'm wondering if changing the brand of medications is worth a shot or if uping the Levo is the better route? Do Hypo's react well to armor or another brand?


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## northernlite (Oct 28, 2010)

If your body does a good job of converting T4 to T3 than you probably don't need a combination drug or the addition of T3. If your body doesn't convert well than you do.

The only way to tell is to get that TSH down and the FT4 up and then see if your FT3 follows. If you TSH is good, and your FT4 is good and your FT3 is not, then you are not converting well and should look at Armour or adding T3 to your Levo.

But right now you have too high a TSH and not enough T4. I would start with an increase of Levo first.

As I mentioned before, I drag with a TSH around 2.0 and feel great when it is under 1.0.


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