Thyroidless — History and Support Group

It all started about three years ago, when the doctor saw that my calcium was too high. I was told that I probably had parathyroid problems. They cause the unusually high calcium. I was referred to an endocrinologist, who told me that indeed, I had parathyroid problems, but they could wait. However, Dr. P told to me to see a surgeon as soon as possible. I trusted him, as he had operated on Guido for a double hernia and for an emergency appendectomy. He is Peruvian, and I liked him.

He did the ultrasound in his office, and showed me one parathyroid gland with what seemed to be a growth. He sent me to have a nuclear scan. It confirmed the diagnosis, and he said I should have it removed. We scheduled the surgery for July. On a Sunday, a week before the surgery, the surgeon called me at home. He had been studying my chart and thought it would be better if he did a couple of biopsies of the thyroid. I went and he did them. When he did not call, I did, and it was then that he told me I had papillary carcinoma of the thyroid, and he had to remove it. (Papillary tumors of the thyroid are the most common form of thyroid cancer to result from exposure to radiation. So, watch out when you go to the dentist. Make sure they cover your throat too when they take X-rays!)

NOTE: Parathyroids have nothing to do with the thyroid (the parathyroid glands are small endocrine glands in the neck that produce parathyroid hormone. Humans have four parathyroid glands, which are usually located behind the thyroid gland, and, in rare cases, within the thyroid gland or in the chest. Parathyroid glands control the amount of calcium in the blood and within the bones). I was in shock, but they told me it was an easy procedure (now I know…) So, on I went to have surgery the 30th of July of the year 2009. Ludy drove me there in the morning, and we returned home quite late in the day. I have no recollection of anything, fortunately! Valeria had come to help, so I was well taken care of!

After a year and three months of suffering, I found and joined a Yahoo group, Thyroidless. I only wish I had joined it before I had surgery!!! I was quite naive, relying on the doctors and the surgeon. He is very competent, no doubt, but… he is a surgeon! He had become somewhat of a legend because he had found one person’s parathyroid in the chest!  And with me, he became an ever larger legend, as one parathyroid was “hiding” behind the esophagus. That’s why the surgery lasted longer than expected, and I had to get more anesthesia than necessary.  And — I had never had anesthesia before in life.  I remember when I came to this country and went to a gynecologist, he asked me about my daughters. I told him I had them without any anesthesia, following the “natural childbirth” method. He asked me if we didn’t have anesthesia in Argentina– YES! Ignorance? Stupidity? It doesn’t matter. It happened.

I should be the one asking the question posed by one person to the group today. I transcribe it here, together with a couple of replies, hoping that someone sees this and becomes enlightened, unlike me.

——

* I am new to this group, and I really need to hear the positive side to this operation and side effects — What to do after and how to not gain weight. I’m scared to death. Can anyone help with this?

xxx

———-

Why are they removing your thyroid?  If I had it to do again I would not remove it, and I had thyroid cancer. There is no guarantee that you will not have issues after you do this. You will be dependent on thyroid medication for the rest of your life. They will leave you undertreated.  Finding a doctor that really knows how to treat you can be expensive and very difficult to find.  Others will chime in here but I think you will find that there will be very very few of us supportive of removal. I fight my weight constantly. I am 30 lbs over where I was several years ago. I can gain 5-7 lbs in one day if I do not work out daily. I eat healthy organic whole foods. It’s discouraging. Wish I had better news but the long and the short of it is that you need what organs God gave you. Taking them out solves nothing.

D

——

I don’t know of any positive side effects of having your thyroid removed for any reason. Doctors are no longer trained in how to heal the thyroid, so they are trained to remove organs instead. The problem with the thyroid is it is a vital organ. Plus the main medication to help you is very hard to find now due to the FDA. Only synthetic hormones are available, which will most likely not do much to help you. It is actually much easier in the long run to get the thyroid healthy. There is a lot of information on these groups on how to do that. I had a tiny cancerous tumor – under the size they should have even messed with. However, I trusted the doc., and went to the surgeon he recommended. The surgeon not only took all of my thyroid, but also part of my para-thyroid…

They then highly suggested I do the RAI radiation (to clean up any left over tissue) not telling me it would go to all my organs…  After at least a month, I complained that I wasn’t on any thyroid medication. I was put on Synthroid, and was dying. I had no clue what was going on. I just slept a lot and had trouble even sitting up. I met a nurse who had 1/2 of her thyroid and told me about the natural thyroid hormones. I got on 1 grain and the lights came back on in me. I had to play 2 doctors against each other stating the other had upped my dose until I got to 3 grains per day. I needed 4 grains to feel okay. It is not easy at all to try to stay healthy, and I sure wish I found this group first. I highly regret the surgery, knowing what I know now. But it is too late. Now I have to be so careful every day, and fight to get the right medication, and work on balance out my adrenal glands. The surgery was easy, but didn’t solve any problem. So,  surgery is not the answer – just more problems….

N

—————-

The positive side of partial or a total thyroidectomy? The doctor pockets a big wad of cash and has you hook, line, and sinker as a patient forever because your health will progressively go downhill. That’s it. A benefit for the doctor, but not for you. So, do yourself a favor and let us know why you’re getting the surgery, because maybe we know of a better and less devastating alternative to address the problem. I am very serious. By the way, if you feel rushed or intimidated (or scared to death) into having surgery, then reschedule it. It is your right to do so.

And it is YOUR body. OK?

S (thyroidless since 1990)

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About martisima

After over 50 years of teaching literature to undergraduate and graduate students, I feel I have earned my retirement (it happened when I was 72, five years ago). I do miss the classroom, however, but not the meetings and all other requirements of the profession. I love teaching, and wish I could still do it. But now I read for pleasure, and watch films, and listen to all kinds of music (no TV, though). I love to travel, and hope I can resume doing it soon. I need to get over my health issues caused by thyroid surgery three years ago!
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