# Help me with labs, please



## Thyrodeo (Jan 9, 2011)

Hi,

Thank you so much for reading this whole long post. I have been struggling with Graves for about three years. Personally, I think my thyroid was a little funky years before that (gained a bunch of weight, was very depressed and very tired, but other than "mildly elevated TPO antibodies," in 2005, thyroid levels were normal. TSH .859 (0.4-6), FT4 1.37 (09-1.8.) When I got my records from that time, they said "Hashimoto's thyroiditis," but no one ever said that to me.

No other thyroid evaluation until 8/2010. 
A little background, I am a veterinarian. I diagnose and treat thyroid problems myself. They're not the same in animals, but they're close. Dogs get Hashimoto's and cats get something like Graves, but not exactly. We don't measure the antibodies, but otherwise it seems similar. All that is to say I'm not clueless about the way the process works, but my Graves just has my brain SHUT OFF. It's maddening. I had to stop practicing and just manage the off instead. (My husband is the other vet there, so that worked out okay.) And even when I sit down to try to figure out what is going on in my own thyroid, I lose my train of thought and just can't figure it out.

My doctor just fired me for being so indecisive about surgery versus RIA and I know I was drivijng him crazy, but I feel like I can't decide until I really understand what's going on and I feel like I can't understand what's going on because I'm in this thyroid fog.

Also, I'm very overweight. As I said, I wonder if something was up with my thyroid years ago when I gained 100 pounds in about a year and am still carrying it, graves and all. I was just so terrified that after RIA or surgery I'll gain even MORE weight and just die of obesity. I am tired to exercise now, which I know isn't helping, but I really try to watch what I eat. I'm a vegetarian (was anyway), so no meat, no wheat or "wheat-free" stuff, so no bread, pasta, crackers, cakes, cookies, donuts, chocolate.. any of that. No processed food. No sugary drinks.

Anyway, because of the continued weight struggle I wanted to try a little bit longer than the average person for remission with Methimazole. This is the record of me trying. I wanted to see what you thought of it. It may not matter either way now as they say I need surgery or RIA, but I'm kind of stuck figuring it out myself as my doctor is done with my BS.  I have an appointment at Mayo in a couple of weeks but I want to be straight with my facts when I go. Thank you and here's the history:

08/17/2010 
I had been to my primary care doctor with fatigue and muscle pain. I don't have those lab results but my tsh was about zero (0.001, I believe.) Went to endo and 
FT4 3.72 (.9-1.8)
I thought he did antibodies at that time but he didn't. I asked for an ultrasound and had a quite enlarged thyroid, no nodules. 
Iodine Scan consistent with graves. 
Put on 60mg a day MMI (Six 10mg tabs once a day, or said I could divide to twice)

10/29/10
TSH <0.005 (0.4-6.0)
FT4 2.4 (0.9-1.8)

Still feel bad, continue 60mg a day methimazole

1/28/11

TSH < 0.01 (0.4-6)
FT4 1.5 (0.9-1.8) 
FT4 in normal range now, continue 60mg

4/25/11
I'm having fatigue and muscle cramps.
TSH 0.016 (0.4-6)
FT4 1.06 (0.9-1.8)
Decrease dose to 50mg

5/2/11
No bloodwork done, I said I still had fatigue and muscle cramps. 
Continue 50mg, recheck September.

Mysterious area here. I'm looking back over notes. Endo wanted me to stop meds in September (according to notes,but I either didn't understand that or forgot) and kept taking them through October. I felt terrible and called and they said to stop meds and check bloodwork in a month. So I stopped MMI (no taper, just stop.)

11/10/11

Felt better of MMI for a while.
TSH 0.012 (0.4-6.0)
FT4 1.5 (0.9-1.8)

Endo says based on this bloodwork, remission not going to work. 
Back on 30 mg MMI

1/18/12
TSH 0.053 (0.4-6.0)
T4 1.0 (0.9-1.8)
stay on 30

4/25/12
TSH 2.48
T4 0.82

Had my gallbladder out in the spring (after this appointment.)They used contrast, which I imagine was Iodine.
30mg 
I actually had been feeling ok during this time, on and off. I"d been hiking again.

9/26/12
TSH 2.41 (0.4-6.0)
FT4 1.1(0.9-1.8)

Reduce dose to 20 
He's thinking maybe remission at this point

1/3/13
I started feeling really bad, tired, would just fall asleep randomly. Not get sleepy, but actually fall asleep. Hair falling out. I started thinking my levels were getting low, so I tapered my mmi off (not in any logical way, just started forgetting it more often until I wasn't taking it at all for about 3 weeks before my appointment.) Stupid, I know. 
TSH: 0.581 (.4-6)
FT4: 1.0 (0.9-1.8)

Endo says got to do surg or RIA now, stayed off MMI to decide which one.

2/13/13

Feel bad on and off.
TSH 0.09
T4 1.2

Still can't decide surgery or RIA, started back MMI 10mg

3/19/13
TSH 0.246
T4 1.1

5/13/13
TSH 1.2
FT4 0.9

I got my medical records to see if I could see a pattern in my ab levels compared to how I feel, but found there weren't any ab levels done. Asked for antibodies to be done on this visit, they did TSI which came back 482%, which is "very high." but I don't have reference range.

Thank you if anybody was able to read all that. 

My doctor has had it with my indecisiveness and I know my thinking is cloudy but I'm not trying to be difficult, I just want to understand the best thing to do before I do something permanent to my body and doom myself to being 100 pounds overweight forever. He says people with normal thyroid levels (after synthroid) are as able to lose weight as well as anybody else and if they can't it's "in their mind." I asked if it is possible that different people have different "normals" and he said, "I don't have time for these questions."

I keep reading on boards about people who have RIA or surgery and have trouble after that. I don't think it is in our minds. I know there are plenty of times my labs say "normal" and I feel terrible.

Last question, I realize I have antibodies mimicking TSH and either activating my TSH receptors, and therefore increasing FT4, or blocking my receptors and decreasing it (?), but what happens with TSH? I learned that TSH is responding to thyroid hormones. If T4 is high, TSH will decrease. Then why does TSH decrease BEFORE T4 gets high? What is affecting it?

Thank you!


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## webster2 (May 19, 2011)

Hi & welcome!

Have you had your liver enzymes checked in all of the time you've been on ATD's?

I certainly can understand the indecisiveness. For a long time, I could not make a decision about anything, that was the one thing that drove my husband insane. Not the mood swings or anything else. I don't understand that!

Your TSI is really high. Do you take a beta blocker too?

I think if you decide on a treatment plan, you will find that you'll feel better. For me, it was not instantly after surgery but I feel so much better than I have in a long long time. The weight thing with me has turned into not as important as how I feel. I was an extreme athlete before Graves really knocked me down. I am overweight but I an now able to exercise daily and if I choose to eat correctly, I can lose weight. I am more excited about being able to really exercise again. Maybe sometime in the future I will be more consistent about my eating habits. Anyway, my point is, weight can be controlled after RAI or surgery but it takes being vigilant.

I have some other issues from having undiagnosed Graves for awhile. I am sure you know that heart and bone health can be affected.

What are your reservations about surgery or RAI? Have you found a new doctor?


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## webster2 (May 19, 2011)

Geez, I forgot to ask if you have eye involvement?


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## Thyrodeo (Jan 9, 2011)

Thank you so much for your help!

Yes, my liver enzymes are always normal. I do have eye involvement, I'd say mild. It was worse at first, with lots of tears and burning and one eye looking bigger than the other. It's better now but still there and my eyes still look weird.

I was totally ready for the surgery, met with the surgeon, but didn't like him. He was a general surgeon and did "a little of this and a little of that," although he does do about 2 thyroids a week. I was more looking for a "do mostly thyroids" surgeon.

I'm going to Mayo in a couple of weeks.

I am so happy to hear about the exercise! That's what I miss the most. I like to hike and have a (probably totally ridiculous) dream of hiking the Appalachian trail, but I'm so weak! Happy to hear from somebody who says they're working that out!


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## webster2 (May 19, 2011)

I think you were wise to pass on that surgeon and find someone that does more thyroidectomies.. An ENT is a good choice but so is MAYO. I think you will hear from some more folks but it is a holiday weekend. Again, welcome!


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## HotGrandma (Sep 21, 2012)

There is/was a HUGE problem with your Dr. Methimozole is an ATD (anti thyroid drug) it has a short life much like an antibiotic. It has to be taken three times per day. I myself tried taking it 2X per day. It was only after it was explained to me the short life and I took it 3X per day did I start improving. Studies of patients acheiving remission on ATD say the drug should be used for 18 months to 4 years. Its possible to enter remission only when the antibodies TSI and TRab are in the 20 something % range. As far as your question about TSH. TSH takes at least 6 weeks to catch up to your Free T3 and Free T4. Right now your Free T4 maybe in normal range, but you are hypo. I could not tell the difference between hyper and hypo because symptoms can and do cross over. I only know its not right.

I concur with Webster that about that surgeon. The Mayo is a great place for diagnoses and treatment. Wish I could swing that for myself. Good luck to you. P.S. Whatever you decide if the antibodies are high RAI or Surgery can aggrivate and make the eye disease much worse. Its the antibodies that control the eye disease and since they won't be picking on the thyroid they go straight for the eyes.


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## Andros (Aug 26, 2009)

Thyrodeo said:


> Hi,
> 
> Thank you so much for reading this whole long post. I have been struggling with Graves for about three years. Personally, I think my thyroid was a little funky years before that (gained a bunch of weight, was very depressed and very tired, but other than "mildly elevated TPO antibodies," in 2005, thyroid levels were normal. TSH .859 (0.4-6), FT4 1.37 (09-1.8.) When I got my records from that time, they said "Hashimoto's thyroiditis," but no one ever said that to me.
> 
> ...


LHM!!! TSI @ 482%???? Girl; you are your own worst doctor (hope you see the humor!) Please get that thyroid surgically removed (main reason so pathologist can make sure there is no cancer and also RAI can trigger the eyes pretty badly!)

Then, you will need about 18 months to get on track with weight loss and feeling terrific. We will help you with whatever we have to help you with. Lots of experience here.

You cannot go on like this; the permanent damage to your bodily organs including heart and eyes will be mind boggling. Don't do that to your self.

As far as I know, there never has been permanent remission of Graves'; just a temporary respite.


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## webster2 (May 19, 2011)

Andros is right on. And, we'll help you.


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## Octavia (Aug 1, 2011)

I do not have Graves, but based on reading many, many people's experiences here, I have to say I agree with Andros...if I were you, I'd get that surgery scheduled ASAP. Get that dang thyroid out of there, and begin living your life again!!!! It is a quicker and more permanent solution than the RAI, which you may need multiple times because nobody can predict how effective it will be.

In addition to your Mayo appointment, I would recommend making an appointment with a local ENT who does several thyroidectomies a week.

Please keep us posted.


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## Thyrodeo (Jan 9, 2011)

Thank you! Is there not an option of getting the thyroidectomy at Mayo? That's what I want. Surely somebody there has done a billion of them.


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## webster2 (May 19, 2011)

I hope that Mayo will do it for you. I am sure they must do plenty. Be your own best advocate, let them know what you want. Bottom line, you want to feel better and enjoy life!


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## Thyrodeo (Jan 9, 2011)

So the surgery won't affect these antibodies long term, right? Does anybody have ideas if these can be controlled? Or is that just hopeless?


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## Octavia (Aug 1, 2011)

My understanding is that once the antibodies no longer have something they're focused on attacking, they eventually calm down.

(Would love to hear others first-hand experiences with this, as I don't have Graves.)


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## webster2 (May 19, 2011)

Thyrodeo said:


> So the surgery won't affect these antibodies long term, right? Does anybody have ideas if these can be controlled? Or is that just hopeless?


You will always have the antibodies and Graves disease. Removing the target (the thyroid) will calm them down, unless they have already begun to attack the eyes, things should improve . I have minimal eye involvement and it has not progressed at all since surgery. I eat gluten free which also helps keep the antibodies quiet.

It is not hopeless, I feel better than I have in 10 years. I have mental clarity. I no longer have horrendous mood swings. I feel calm, no racing heart, anxiety, no insomnia, tremors, uncontrollable sweating, or icky nasty skin lesions. I have stamina. I feel great! Having the surgery was the best decision ever, and I made that one myself, no waffling. I am pretty sure people that have RAI have the same results.

Titrating the replacement hormone takes time and patience. I was not patient and had a few blips...gall bladder removal, broken wrist, a flare up of other auto immune business. I feel like I am still in the learning curve on how to deal with this stuff but I think I am getting it. I feel great!

Prepare for your appointment, get your questions gathered, have your lab results with you, if possible bring someone with you to the appointment, and try to decide what treatment plan works best for you. Hang in there, it does get better!


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