Thyroid Mass/ Goiter

[mom_in_training]

My difficult child back in 1999 had a large mass and cysts surgically removed (Partial thyroidectomy) She has never been put on any medications even after doing almost two years of follow up with the Endocrine. All of her labs to include when she has the mass always came back fine. Forward to now>>>>>> She is now 19 and she has another mass and nodules that has reacurred. We saw the Endocrine last thursday and he wants to remove the whole thyroid. Yikes!!!!

You know how it is, We do not always have all of the questions at the right time and then think of them after the fact. Well I have many questions and am hoping to head off future health problems that will be created by having no gland at all. She had an ultrasound done on Dec 31st and did have her labs done on Thursday but have yet to have the results on the labs yet.

I am not so sure that they took her whole left side in 1999, My understanding is that they removed the mass along with the cysts (Benign, Thank god) and took a small portion of the thyroid not the whole left side. I know these are questions that I need to ask the Dr but I feel the need to post and get input from others that have had to unfortunately experience medical issues related to the thyroid as well as input as to what questions I should be asking should I miss something. Lol!! I'm in it so my brain is racing and I could see me missing the boat somewhere, Lol!!.

I question:

What the Dr based his quick decision on? Of course she has the mass and nodules but he did not offer up a biopsy and that bothers me. Did he base it on her only having the right side that he sees as failing at this point, Or does he see it as the mass enveloping the right side and sees no other option, Therfore just rid of the problem because its not doing its job anymore? Hmmmm, For about five months now my difficult child has been experiencing heavy periods and just within the past couple weeks feeling tired. Other then that she seems just fine, Tired but not even sleeping all day or anything like that.

I have been looking for whatever info I could find on people that have been there done that that can share their experience and or their outcome with or without a thyroid gland but am not finding tons. I did e-mail one gal but have yet to hear back from her and she did have her thyroid completely removed. I have found that allot of patients biggest issue is the fact that the doctors treating them are not up front with them about what the future outcome could be health wise and some regret not doing their research and are now having to fight just to make it through the day. My difficult child thinks I am being a pain but I tell her that I have her future health and well being in mind and all I want to do is head off major health complications that can ocurr once the whole gland is removed. Once its gone THATS IT!!!! There is no going back. I remind her too that this Dr is doing what he does best (his specialty, Endocrine) but he will not be the one walking in your shoes having to deal with the outcome, He will simply move onto the next patient. Just my thoughts but all of this for what very well could be a quick fix? Hmmmmmmm, I have a problem with that if that is what is going on.

On another note, I checked out the surgeon and he is listed under General Surgeon with interests in Surgical Oncology Gastrointestinal Oncology and Breast Disease (It says this on the hospitals web-site). Ummm I would not want a gastrologist doing surgery for a neuro problem so I am a bit uncomfortable considering that he is a general surgeon. I too noticed that the description for the Endocrine Dr states that he is Endocrine/Surgeon but based on everything that we had discussed he never did say that he was going to actually do the surgery or be there, He made it sound like he was just going to throw it to this other guy (General Surgeon) and said that we would be seeing this surgeon once the ins approvals were complete.

 

[Scent of Cedar II]

Is it possible for you to do nothing until your questions have been answered satisfactorily?

The other cycts were benign.

Shouldn't surgery be a last alternative ~ not the first thing tried?

Difficult decision for you.

I wish I could have been more helpful.

Barbara

 

[mom_in_training]

Barbara, Yes it is possible, Its going to take a lil time for the approvals I think so I am thinking to have another sit down with this Endocrine Dr or seek another opinion. I want a Dr to be blunt and to the point. I would not have all of these thoughts and or questions had he been more to the point and of course if I had in the midst of our first meeting had the questions at the right time I think that that would have helped but we all know how that is, We somehow do not think of them until after the fact.

"Shouldn't surgery be a last alternative ~ not the first thing tried?"

I think the last alternative being surgery would be optional depending on the size of the mass or the thyroid itself or the results of the labs or a biopsy if done. . My difficult children thyroid is pretty prodominant and the Dr was smiling as he was telling my difficult child that removing the gland would be a good thing for her for cosmetic reasons. Hmmmm. I'm thinking HELLOOOOOOOOO........ I worry more about the outcome that cannot be reversed once its said and done that will definitely lead to many health issues that my difficult child will have to endure in her future. Yikes!!!!

 

[susiestar]

I would write down ALL the questions and simply refuse surgery until you have answers that you accept AND a surgeon you trust. Esp ask how many of this kind of surgery the surgeon has done.

As my doctor explains thyroid problems (I have autoimmune thyroiditis - or my immune system is killing my thyroid), the thyroid is the organ we can most successfully live with-out.

The synthetic thyroid hormone is supposed to be bio-identical to human thyroid hormone. Compounding pharmacies do have some other thing they mix up, not too sure, but the regular thyroid hormone is supposed to be really close to what your body makes.

My doctor has no thyroid, and she says it really is no big deal. She has to remember to take her levoxyl, and get the levels checked, but that is it.

I have been amazed with te levoxyl. It really makes a difference in how I feel, and until 1 month before my surgery I had normal thyroid levels. I knew my body was "killing my thyroid", but didn't know what a big difference it made to have the hormone be replaced.

Hope this helps, sorry I rambled.

Susie

 

[mom_in_training]

Susie keep rambling, Lol!! I need the knowledge. Surgery, Do you still have your thyroid? I have read that many experience having problems with calcium depleation and energy levels as well as weight gain.

 

[susiestar]

I still have my thyroid, I learned about 1 1/2 yrs ago that my body was attacking it. The labs just before the neck thing were when we discovered that the levels are low.

As for calcium, I already have osteoporosis, just don't know how bad. But the surgeon said that the bone is quite thin. I do Not tolerate Vit D, so my body isn't really able to use calcium anyway. That is my project for 2008 - get the osteoporosis/Vit D thing figured out.

I don't want to REALLY be a slug!

From many forums, if your thyroid levels are right and you are gaining weight it is a sign to try a different form of thyroid hormone, such as one from the compounding pharmacy. It can mean your body isn't absorbing it properly.

But I am NOT 100% sure of that.

Hugs,

Susie