Questions About Thyroid/Parathyroid Surgery

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Questions About Thyroid/Parathyroid Surgery

Postby JudyJB » Mon Jan 29, 2024 9:18 pm

It is a long story about how i got here, but I am supposed to have surgery to remove a small nodule on my parathyroid in Juneth. There is a chance that the nodule is really on the thyroid, but they said they will not know for sure until they get there. I am questioning two things: Do I really need this surgery? and Can I get it without general anesthesia?

Quick summery: I saw urologist in May 2022. He said I had a stone in my left kidney that probably would not pass. Secondary to this, he referred me to his PA who would help to try to figure out why I had had so many kidney stones. So she scheduled blood tests and two 24 hour urine collections from Dec 2022 through June 2023. First, she tried to convince me I had gout because I seemed to be eating too much protein. (I have never had any symptoms of gout, but twice in 6 years I had a slightly high level of uric acid. Also, I really do not eat a lot of protein--steak size is maybe 2 x 3" when I have a piece of steak, but she clearly does not believe me, and still thinks I really have gout, but will not admit it.) I had told her once when she asked about my bedtime snacks that I might have cookies, or some ice cream, or a glass of milk, but I also mentioned that one night i had two hard-boiled eggs. She wrote on my online chart that my usual nighttime snack was two hard-boiled eggs!!! Needless to say, she did not listen to me, and I really dislike this woman!!

Next, she sent results to an endocrinologist who noticed a very small increase in parathyroid hormone on a blood test, so she ordered a cat scan and then a pet scan. It determined I had a "nodule with increased activity" but a blood test also showed normal parathyroid levels. Nothing said how big this nodule was or what danger leaving it alone could cause. It was just, let's just schedule it! The big thing is that I have not had a kidney stone pass or try to pass in almost five years, although I have had plenty of them in the past. Also, the endocrinologist wants to do this surgery in June under general anesthesia. But I feel like this train is really out of control and ready to crash!!! So, after thinking about all of this, I have a second opinion scheduled in two weeks with a Florida urologist who is with Cleveland Clinic and can see all my test results.

It really bothers me to have more surgery under general anesthesia since I am now 80, especially if I do not need it. Plus, am I just having this to prevent more kidney stones when I have not had any in 5 years??? Doing online research shows a lot of endo surgeons doing this under local anesthesia, which I would not mind as much.

Has anyone here had thyroid surgery under local anesthesia? Any thoughts on my being right about stopping this train as it heads downhill? Or am I nuts and should just go through with this??? Maybe see a different endo surgeon?
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Re: Questions About Thyroid/Parathyroid Surgery

Postby Bethers » Mon Jan 29, 2024 9:55 pm

Judy, just reading what you've written I would have trouble doing this based on your words:
It determined I had a "nodule with increased activity" but a blood test also showed normal parathyroid levels. Nothing said how big this nodule was or what danger leaving it alone could cause. It was just, let's just schedule it!

I hope others can help more but it doesn't sound to me like you need it from that alone. They're have to convince me beyond that.
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Re: Questions About Thyroid/Parathyroid Surgery

Postby JudyJB » Mon Jan 29, 2024 10:06 pm

Beth, I was going alone with all these plans until a few days ago when I really started thinking about it. My mother had mild dementia, but when she had general anesthesia for a broken hip, she went mentally downhill fast and was never the same.

Some questions I want to ask the urologist are:

- Why have I somehow stopped producing kidney stones? It seemed to happen when I was getting CLL treatment in Oregon, and after I had two procedures to make sure my ureters (tubes from bladder to kidneys) were clear.

- What is the status of the stone I currently supposedly have? Is it damaging my kidney? Should I do anything??

- How high does parathyroid numbers need to be before they cause kidney stones?

- Does this surgery really reduce chances of kidney stones??

If this surgery is really not going to reduce kidney stones, I guess my next step is to talk to another endocrinologist and ask about the risks of leaving it alone??? I also want to know why some surgeons are using local anesthesia while others insist on general anesthesia.
JudyJB
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Re: Questions About Thyroid/Parathyroid Surgery

Postby Redetotry » Tue Jan 30, 2024 7:53 am

I think a second or even a third opinion is the way to go. The first place you went in June sounds totally as though something was wrong especially your experience with the PA. If there are as many red flags at the new doctor get a third opinion. There are online reviews about doctors, their rating and where/ how long ago they went to school and whether they have ever had malpractice suits brought against them. In fact, I would research the new doctor before you see him and if he doesn't have good reviews or he didn't go to well reviewed schools cancel and find another. I'm sorry you are having to go through but especially now when there are so fewer doctors.
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Re: Questions About Thyroid/Parathyroid Surgery

Postby OregonLuvr » Tue Jan 30, 2024 8:59 am

Guess I will weigh in on this. I really think you need a second opinion AND view the results and interpretation of your CT scan or have them show it to you. I get mine online in my portal for that doctors office. Most providers have a portal. I see all test results and the interpretation of all scans right there by the radiologist and what they see on the scan. After I had so much trouble with my lungs after covid I saw a pulmonologist. She said I had a couple of small nodules in my lung but attributed that to scarring from the pneumonia. She brought the laptop over to me and we went over it together. Showed me what they were watching and what I was seeing. Then had a follow up CT last year and no change. They are still following me and I will have another CT in February,
I dont know about thyroid problems like yours but you need way more information to make an informed decision. I also say if you dont like your healthcare provider there are MANY more out there that you will click with and feel comfortable.
As for the anesthesia each doctor has his own comfort level be it concious sedation, local or general anesthesia.
I am asymptomatic for just about anything new even tho the docs try hard to find something ha ha Months ago I had an elevated glucose by about 9 points. Well she put hyperglycemic on my next lab test ha ha ha I had eaten breakfast AND a coffee mocha before those labs. They were not fasting so it was totally normal values. Dont think I didnt tell her that too ha ha My next values were just dandy.
As we get older, lets face it things start to wear out, we develop issues. Some small some bigger. We are all different. Cant do what I used to be able to, but keep trying some of it.
Hope you get your questions answered to your satisfaction. At least the ones that have answers. Sometimes they just dont know. People say the doctor didnt know what was wrong!!!! well the process a doctor goes thru is elimination. Run tests find out what it ISN'T then go on from there and narrow it down to what it is..
Good luck Judy
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Re: Questions About Thyroid/Parathyroid Surgery

Postby Cudedog » Tue Jan 30, 2024 11:16 am

OregonLuvr wrote:Hope you get your questions answered to your satisfaction. At least the ones that have answers. Sometimes they just dont know. People say the doctor didnt know what was wrong!!!! well the process a doctor goes thru is elimination. Run tests find out what it ISN'T then go on from there and narrow it down to what it is..
Good luck Judy


Karen, well put.

Judy, what everyone else has said.

I wouldn't have anything done unless or until all of my questions had been answered. But that's just me, I can't speak for you, or of what you should do. If your current medical team can't - or won't - take the time to answer all of your questions - no matter how detailed those questions might be - it's time to find a new medical team.

When I was a young person I thought of physicians as gods, and the medical teams supporting those physicians as saints.

Now. . . not so much, for a lot of reasons. There are good and bad practitioners in all professions, of course.

Physicians are human, too: I have been diagnosed more than once for a serious something that I didn't have.

Thirdly, after a surgery I had many years ago, I was told - repeatedly and forcefully - that if I didn't take the recommended hormones (which were thought to protect the heart) I would be dead in ten years. Despite these recommendations, I refused to take these hormones.

I am still going strong thirty-five years later.

And about five years after my surgery, it was found that the taking of these recommended hormones were strongly linked to breast cancer. So, had I decided to take these hormones, I might have been dead within a few years - of breast cancer, not heart problems.

Lastly, let me say that the place to ask serious, possibly life-changing, medical questions, and to get medical advice, are not internet chat rooms or internet bulletin boards.

Be persistent in seeking out medical professionals who are willing to spend more than a few minutes with you, and are willing to answer your questions.

That being said, let me add that I know it is becoming more difficult, here where I live in a fairly small town, to get good medical care, and to find a medical practitioner that cares to take the needed time with me. I actually think this is time-constraint thing is beginning to happen everywhere.

For you, travelling around as you do, it must be infinitely more difficult to find good care than it is for me, stationary in one place.

Good luck.

Anne
Last edited by Cudedog on Tue Jan 30, 2024 11:22 pm, edited 1 time in total.
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Re: Questions About Thyroid/Parathyroid Surgery

Postby SoCalGalcas » Tue Jan 30, 2024 11:55 am

I AGREE with the above. Get all questions answered or DON’T. Have surgery! At Kaiser all doctors were put on a schedule telling them 15 minutes per patient. I suspect all doctors have these orders. Insurance companies are dictating to doctors now! Lyn
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Re: Questions About Thyroid/Parathyroid Surgery

Postby JudyJB » Tue Jan 30, 2024 10:45 pm

Thanks for all your advice. I think the thing which really set me off about the PA was when she would not believe me when I told her what I ate, and how she kept insisting I had gout, when I had no symptom,s and she was basing her diagnosis on only one blood test. I don't need medical personnel who want to argue with me about things they really know nothing about, such as how much and what I eat!!!

I am going to see the second opinion urologist next week, and then I will follow up with a second opinion from a different endocrinologist before I schedule any surgery.
JudyJB
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https://2022humongousukadventure.blogspot.com/
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Re: Questions About Thyroid/Parathyroid Surgery

Postby avalen » Mon Feb 19, 2024 9:29 am

I'm just catching up here on all this but I will tell you back in "about" 2005 I was on chemo for my liver and the treatment started to damage my thyroid. I was sent to the endocrinologist and she said there were two small nodules on my thyroid and they could kill the thyroid and put me on synthroid. I said no!! The nodules disappeared after the chemo left my system.
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Re: Questions About Thyroid/Parathyroid Surgery

Postby JudyJB » Mon Feb 19, 2024 6:13 pm

Thanks. I should have updated this, but I saw the new urologist a couple of weeks ago, and he said to skip the surgery since there were easier and better options to slow down my kidney stones.

And since then, the blood work he ordered showed that the numbers for my parathyroid were right in the middle of normal!! My uric acid numbers were normal, also, so as the PA who originally diagnosed me with gout in spite of my having absolutely no symptoms, this confirmed she was absolutely wrong!! I am not going to see her again, for obvious reasons.

Another lesson learned: When I was finishing CLL treatment in the fall of 2019, I had blood in my urine for several days and left kidney pain, so I was pretty sure I had a stuck kidney stone. I went to a hospital emergency room in Eugene to check the status, and they first gave me a blood test and then sent me back to the very busy waiting room. After about an hour, they pulled me into an examination room, and a doctor came in with her hands full of little bottles of something. She told me my blood test showed that I was dangerously low in potassium, and they wanted to admit me to the cardiac unit in the hospital because it was so low that I was in imminent danger of a heart attack. The stuff in the doctor's hands were bottles of potassium that she was about to inject into the IV that they had put in my arm!!

Remember, I had no heart attack symptoms and was there for a kidney stone, and suddenly they were going to admit me for a likely heart attack????????? I questioned the low potassium, so they repeated the blood work. Surprise!! The potassium level was normal. The important thing is that too much or too little potassium can cause a heart attack and kill you. Had they injected all those little bottles into me I very likely WOULD have had a heart attack! When I later told me oncologist who practiced in the same town, he said that if you leave a blood sample laying around for too long, the potassium will give a bad reading so it was good that they repeated it!! My lesson learned is to never allow anyone to act on the basis of a single blood test.
JudyJB
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