# Jumping the gun?



## onlybattles (Jul 28, 2014)

Hi everyone!

I've sought out this board after going in circles with my endo for months, and I've finally made up my mind. I see her on Thursday, and I want to go in confidently to request that she remove my thyroid, or half of it.

I know, it sounds (maybe?) a little crazy, but hear me out. I'll make this as short and concise as I possibly can.

Dx with Hashi's and PCOS at 13 (I'm 21 now) and have been on a roller coaster ever since. I was seeing a pretty good doctor up until three years ago, when she breached my patient confidentially and I dropped her like a hot plate. I requested copies of my chart and went to another (highly recommended) doctor, who I'm seeing now. My thyroid has been managed with her ever since, and up until a year and a half ago, I was doing eh, okay. My TSH wasn't perfect, still a little elevated, but she wasn't too concerned. I wasn't losing weight, but I wasn't gaining weight either. I was on birth control, managing my diet pretty well, and all things considered, I thought I was doing okay. (To be clear, my thyroid has never been "regulated." At various points in my treatment, my medication doses have always been raised or lowered).

Three or so months ago, I began to have serious trouble swallowing. It started with grainy foods - rice, oatmeal, ground beef - and has, over the last six weeks since I saw my doc, regressed rapidly. I have to alternate bites of food with water, have to take very small bites, and have to avoid some foods altogether. I was at church yesterday, and I choked on the host! That was kinda embarrassing..

I've also had trouble breathing. When I told my doctor this, she immediately said, "well, you are slightly overweight." Yes, lady, believe me, I know. However, I'm not talking about being hungry for air during exercise. I mean, sitting, having a conversation with someone makes me winded. Singing in the car, talking to my customers at work, walking from my car to work (30/40 feet, maybe?) When I told her that, she told me to follow up with my GP because there's "no way that being short of breath has to do with your thyroid." My GP laughed at me, and told me to go back to her and make sure she double checks her facts.

I've done the hair loss thing, too - it got to the point where I was considering shaving my head because I looked ridiculous with these patches of hair left. Mood swings, depression, temperature changes. I need to sleep 14 hours to function an 8 hour day, and it should be the opposite, really. I'm tired of this (pun intended 

An ultrasound shows that the left side of my thyroid is enlarged, but that was all my doc said about it. My TSH (with 200 mcg of Synthroid) is 25, and that's kinda scary.

I've been dealing with this for eight years; the symptoms are literally and figuratively exhausting! I know I'm totally preaching to the choir, because you guys get it. Does it make sense to ask my doc about removal, or am I jumping the gun here? I just feel that it's a toxic at this point, and I'd have a better chance of regulating my hormone levels without it.

Thoughts, advice, comments or questions? Please (!!!) shoot them this way. I need as much input as I can get! I'd also love to hear from people who have had part of their thyroid removed, or the entire thing, as what your experience has been post-op?


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## joplin1975 (Jul 21, 2011)

onlybattles said:


> An ultrasound shows that the left side of my thyroid is enlarged, but that was all my doc said about it. My TSH (with 200 mcg of Synthroid) is 25, and that's kinda scary.


Wow, that's...pretty insane! 200 mcgs of Synthroid and you have TSH of 25!!!

What about antibodies, have they tested those? And you are getting free t4 and free t3 tested, yes?

Anyway, back to your original question, I had my thyroid evicted and it has been the best thing ever. I've got my life back. I hate sounding surgery happy, but I would recommend it to anyone.

Regulating meds after surgery can be a very long process that tests your patience like nothing else. You can feel crummy for months on end. But, once they've got it right, wow, it's wonderful. I would not, however, do it unless you have a doctor who is willing to dose off free t4 and free t3. If you have TSH worshipper, you could very well be in worse place after removal.


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## onlybattles (Jul 28, 2014)

Hi joplin1975! Thank you for your input!

She always mentions that my T3 and T4 are elevated, but has never given me an exact number. I have copies of lab work at home and can give you some more information later on. As for antibodies, I'm not sure what you mean by that?


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## joplin1975 (Jul 21, 2011)

Your t3 and t4 are elevated? Interesting....yes, post those lab results with the reference ranges when you have a moment!

Antibodies are often tested to show evidence of autoimmune disorder. You'll most commonly see TPO and TSI on the lab sheet.


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## Andros (Aug 26, 2009)

SUGGESTED TESTS
TPO (antimicrosomal antibodies) TBII (thyrotropin-binding inhibitory immunoglobulin), Thyroglobulin and 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/
(Copy and paste into your browser)

Trab
http://www.ncbi.nlm.nih.gov/pubmed/17684583
(Copy and paste into your browser)

I am so sorry that you have been suffering like this. No biopsy of your thyroid gland all this time? It might be interesting for "you" to get a copy of that ultra-sound. When did you have this ultra-sound? Have you had any antibodies' tests such as those listed above?

It might be a smart move on your part to see an ENT.

It certainly sounds like you are on the right track here.

Welcome to the board!


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## onlybattles (Jul 28, 2014)

Thank you guys for your input!!

First, my labs. My most recent round of tests looked at my TSH, T3, and T4. Those are the only ones that she ran that are relevant here. The results and their ranges are as follows:

TSH: 25.87 (normal range: 0.40-4.50)
T3: 3.9 (normal range: 0.8-1.8)

T4: 6.7 (normal range: 2.3-4.2)

According to my ultrasound, the right side of my thyroid (which I originally thought was the left.. that's that fog brain) is about 10.8cm, where it should be between 4cm and 5cm.

I met with my endo today, and she, after listening to my concerns, suggested removal herself. I was so relieved, I could (and maybe I did) cry. She is ordering more blood work to figure out why my levels are so wonky, and wants to do more imaging to see just how ingrown my thyroid is (as my neck has not grown even with the growth of my thyroid, so the question is how involved has my thyroid become with the rest of the structures in my neck?) She wants me to wait a few months, as she wants to try and regulate my levels as best as possible, but I'm not sure if I'm alright with that. I have to go back to school in September, and I'd really like to do this ASAP. I'm just so fed up, there's finally a light at the end of the tunnel - I just want to reach it, you know?

Now, here's my diliema - the other side of my thyroid is seemingly fine compared to the bad side. Do I remove the bad side, or remove the whole thing? (And, on the superficial side, how's the scar? )

I would LOVE some insight here, everyone! No one in my family or friends has ever had thyroid issues, so I'm really going into this blind. Thank you all for your warm welcome and being so wonderful!


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## Octavia (Aug 1, 2011)

The lab results you posted are the opposite of what they "should" be. This leads me to believe that you have significant antibodies. I assume your doctor is checking on those. If that's the case, I would give a strong vote for total removal. As long as those antibodies are at work, you'll be fighting what seems like a never-ending battle. Having said that, though, you are very young...and I can understand why you might be concerned about living without your thyroid gland for the rest of your life.

There are others here who have been in your shoes. They'll likely have better input than me.


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## joplin1975 (Jul 21, 2011)

Agreed with everything Octavia said.

Since you are technically hyper with those frees and surgeons don't like to operate on hyper folks,I can see why they'd want you little more stable before surgery. Will your endo to the surgery or refer you out to a surgeon? If you need to be referred, I would just ask to get that ball rolling now. The surgeon may have a different opinion.


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## onlybattles (Jul 28, 2014)

Octavia, thank you! I am unsure of what she's running now, but when I know, I'll post them here! She said it could be up to two weeks before I get the results (I didn't ask why, but I should have). And yes, that's my primary concern: being younger and having it removed. People live, and live well, without their thyroid everyday, but it's (obviously) a permanent decision and I can't change my mind, you know?

Joplin, she does not operate, so I'm going to find a surgeon. I agree with you, it's good to get the ball rolling on that, as that process can probably take a while!

Thank you both for your help!


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## jenny v (May 6, 2012)

Agree with joplin and Octavia! Total removal will give you a better chance at getting things stabilized, esp. since you've got such wonky numbers. And surgery can oftentimes take a long time to get rolling so better to start things now while your doctor is working on your labs and numbers.

And scar-wise, mine is about 2 inches long and almost invisible 10 months after surgery. It could have been even smaller, but my surgeon had to widen it a smidge because my left lobe pitched a fit and did not want to come out (10 years of Hashi's disease made it a scarred, sticky mess).


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## onlybattles (Jul 28, 2014)

Hello all! I have some more labs to share with you! I requested my doc call me with results as they come in. Maybe it's annoying, but I think she understands my apprehension. Some of the tests that Andros suggested were run, and I don't know what to make of the results so much, except that they just look startling.

Thyroglobin AB: 123 (normal range: <20)

Thyroid Peroxidase AB: >1000 (normal range: <35)

I have had a positive ANA since my pre-teens. Docs thought I had SLE some time ago (my mom succumbed to SLE, and it's on my father's side of the family, too) and with PCOS and Hashi's, it was expected.

My TSH has also shot up to 37.80 (normal range: 0.50-4.30) and my T4 and T3 now fall within normal ranges. My doctor told me that she's waiting on some more blood work, but she's definitely rooting for removal now. My medication has not changed, but my levels are so variable, it's insane! Thank you all for bearing with me. You're the best group of people I've encountered on the internet to date!


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## Andros (Aug 26, 2009)

Lupus symptoms
http://www.couldihavelupus.gov/symptoms.cfm
(Copy and paste into your browser)

TPO Ab
Mild to moderately elevated levels of thyroid antibodies may be found in a variety of thyroid and autoimmune disorders, such as thyroid cancer, Type 1 diabetes, rheumatoid arthritis, pernicious anemia, and autoimmune collagen vascular diseases. Significantly increased concentrations most frequently indicate thyroid autoimmune diseases such as Hashimoto thyroiditis and Graves disease.
http://labtestsonline.org/understanding/analytes/thyroid-antibodies/tab/test
(Copy and paste into your browser)

Substances not found in normal serum (scroll down to autoantibodies)
http://www.thyroidmanager.org/chapter/evaluation-of-thyroid-function-in-health-and-disease/
(Copy and paste into your browser)

Have you had an ultra-sound of your thyroid? Those high antibodies could be for many reasons but their presence does suggest that an ultra-sound would be a good idea.

And ANA is "suggestive" of many things as well. Anti-dsDNA would be "definitive" of Lupus.

Info above

Let us know how you are doing!


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## jenny v (May 6, 2012)

Yikes, with those antibodies that high and your crazy TSH, I would be opting for removal, too!


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