# Horrible first endo appointment



## stlthyroid (Feb 6, 2011)

After two surgical consults, both of which who told me to have my diffuesly enlarged thyroid with multinodular goiter removed, my appointment with an endo went horrible. She reviewed my labs, ask me a series of questions, and then proceeded to tell me that she would not recomend removing my thyroid until my labs showed an abnormal range. Since the biopsy was benign, her reccomendation was to just watch it, and scan it again in six months to check for changes in size.

She totally dismissed my symptoms as unrelated to the multinodular goiter, so much to the point that the two of us were literally arguing in her office.

I called the surgeon back, and of course he said, I could choose to just watch it, but based on the size of the nodules, he felt like it was an abnormal organ, and he doesn't believe in leaving abnormal growing thryoids in your body.

I realize none of you are doctors, but if it were "you", and you had the symptoms I have, as well as the visible lump on my throat, what would you do? Andros, Lavender, I'm lookin for some guidance here.

I just feel like she completely invalidated my feelings. My body is telling me there is somthing wrong.


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## McKenna (Jun 23, 2010)

My endo also was not supportive of my having my thyroid removed. He wanted to wait and see if we could control it with meds, but the problem was that I had high TSI, plus hypo symptoms and it was impossible to get under control. I also had a large cold nodule with inconclusive results and I was not comfortable leaving it in there or only removing one lobe. (I interviewed three surgeons, and one of them only wanted to a lobectomy...no thanks!)

I went with my gut and had it removed. At a recent appointment with my endo he asked how I was doing with it gone and I said I felt better in a lot of ways. Then he finally acknowledged that it was probably better I had it out. I am still trying to get situated on a replacement dose, so I'm dealing with those symptoms, but I don't regret getting mine out. I know it's going to be a long road back to health, and I knew before getting it out that it will take time.

You have to look at the whole picture and what you are comfortable with. I wish you the best with your decision. I know it's not an easy one.


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## lainey (Aug 26, 2010)

Surgeons like to operate, so that is what they are inclined to recommend.

Doctors like to treat, so that is what they like to recommend. They look at numbers, most of them are not into validating your feelings.

If your labs are normal, what makes you think that surgery is the answer to your symptoms, which are____________ specifically?

Has anyone run any antibodies tests on you?

Refresh my memory re: the sizes of the nodules? Nodules are very common in the general population, and thyroid tissue as well as nodules may swell and shrink in response to a variety of health conditions in addition to thyroid problems.

Surgery is not without it's risks, and in spite of the literature that paints an "easy" picture of regulating a patients' levels with replacement medication, people are sometimes surprised to find that it doesn't work quite so "easily" in reality.

What is the matter with watch and wait as a strategy? It is conservative, but once you take the thyroid out, you can't have it back.


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## stlthyroid (Feb 6, 2011)

Laney,

My symptoms are anxiety, constant ear ringing, difficulty concentrating, tremors, never feeling well rested, yet never being tired, frequent urge to urinate, sudden onset of panic disorder.

The specifics on my thyroid is diffusely enlarged, with multiple tumors, 12 of which are 2cm by 2cm, and one very large tumor over the ismus measuring 4.1cm by 3.8(and growing). That nodule is evident just by looking at my neck(looks like a slightly oversize golf ball below my adams apple). This large tumor just started growing six months ago-or at least it was never noticeable previously.

The endo said my labs were "trending" hyper, with a low TSH, and a relatively high free T4. labs were TSH-.79 (range of .28 to 4.2) T4 1.4 with the high range at 1.7). TSH was lower than last lab, and T4 was pretty close to last lab. I asked her what would be the course of action if my labs became out of range, and her answer was "take out the the thyroid", because the nodules are too many, and too large to use RAI.

Surgeons point of view was this-I am a young guy, with a relatively fast growing large nodule in the front of my throat, its his experience that these keep growing, particuarly with me being younger. He just thought that sooner than later I would have to have it removed because of compressive symptoms. Additionally, he said a thyroid that is as diffusely enlarged as mine indicates abnormal growth, and he isn't an advocate of leaving thyroid's in that present with adnormal growth.


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## Andros (Aug 26, 2009)

stlthyroid said:


> After two surgical consults, both of which who told me to have my diffuesly enlarged thyroid with multinodular goiter removed, my appointment with an endo went horrible. She reviewed my labs, ask me a series of questions, and then proceeded to tell me that she would not recomend removing my thyroid until my labs showed an abnormal range. Since the biopsy was benign, her reccomendation was to just watch it, and scan it again in six months to check for changes in size.
> 
> She totally dismissed my symptoms as unrelated to the multinodular goiter, so much to the point that the two of us were literally arguing in her office.
> 
> ...


Well of course she had to take control of the situation. This is how they put patients in their place by invalidation. Every single one of us has had more than one doctor like that. Condescending, arrogant and it's all about "them" and what "they" think. Who cares about you! Pooey on that.

Listen to the surgeon. You will be glad you did. I don't want you to have cancer but "if" you do..........................you can be sure and let this endo know about it. And more!!!

The surgeon has much more experience than this lady will ever have. She's in a box with the lid on.

All of us here can identify; we truly can!! And more!


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## lavender (Jul 13, 2010)

I won't tell you what decision to make. You need to decide that for yourself. For me, my gut reaction is what lead me. My endo mentioned that surgery was a remote possibility and wanted me to stay on anti-thyroid meds for at least a year. The meds made my numbers look good, but they did not help me feel better. He also told me my symptoms had nothing to do with my thyroid. Which was strange because all the symptoms started when my thyroid went out of whack, and my family doctor refused to test or treat anything else because she said it was all my thyroid.

When I went back to my second appointment, I had thoroughly researched my options, and I knew I wanted surgery. I told the doctor what I wanted and why. He told me he disagreed with my decision and presented his case. But he did not stand in my way and referred me to a surgeon. I don't know if he would have reacted the same if I had not been able to clearly articulate my choice and my reasons for making it.

When I saw the surgeon, he explained the surgery, the risks and the alternatives. I knew what risks I was taking and I decided that they were better than the alternatives.

I too am glad I had the surgery. My Graves was far progressed, and the moment I woke up from surgery, I could feel the change in my body, the reduction in overall stress because this sick gland was not there to take over any more. It's hard to explain now, but I could just sense my cells calming down. It was this overwhelming sense of relief. People I have known for years could see it too. They looked at me not long after the surgery and told me I looked better than I had in years, and I was barely healed yet.

Healing from surgery has been difficult. My parathyroids were affected. I hallucinated pretty severely the night after I got out of the hospital and could barely move only to have to return the next day for IV calcium. It took a few months to balance my calcium after my parathyroids shut down, and a few more months to get on the right thyroid medication to allow me to function. My thyroid levels are still being tweaked. But, I am better than I was before, and I know that healing is possible that was not possible before the surgery.


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## lainey (Aug 26, 2010)

stlthyroid said:


> Laney,
> 
> My symptoms are anxiety, constant ear ringing, difficulty concentrating, tremors, never feeling well rested, yet never being tired, frequent urge to urinate, sudden onset of panic disorder.
> 
> ...


Specifics make all the difference to the reader here, you realize.

Many symptoms for hyper and hypo thyroid "cross over", which is why lab work is so important for determining the source of symptoms. A free T3 would be most helpful here--T3 is the "active" thyroid hormone, and is the most telling in determining hyperthyroidism in the situation that you have, where your numbers right now are normal range.

The number of large nodules (now that you have given a size) along with the largest one, more likely warrants a serious look at surgery, yes.

You should research it thoroughly tho so that you know what to expect, because the recovery varies from person to person, and it does take some time (ie months) to regulate the medication.


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## CA-Lynn (Apr 29, 2010)

Many doctors go by their specialty guidelines, and perhaps this is why the endocrinologist decided as she did.

I guess if it was me I'd go to one more endocrinologist at a university and get that opinion.


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