I know that this a community for diabetes, but was wondering if there were people out here, with or without diabetes, that have had Thyroid surgery where either part of or the whole thyroid was removed. I am facing this decision and when I think that I have made up my mind as to what is best for me, I just seem to have more questions pop up. So here seems to be a short list of curiosities that I have.
What was the reason for your thyroid surgery?
Did you have a partial removal or the entire thyroid taken out? Why?
Did you have a biopsy first if the reasons for removal were because of nodules/cysts?
Were there any complication from the surgery?
Are you on hormone supplement and was it an easy adjustment to get your thyroid hormone levels normal?
Were there any adverse effects on your diabetes (if you are a diabetic…I’m a Type 1) and what, if any, special steps did you take to prepare for your surgery in regards to your diabetes?
Any other opinions and information on this topic even if you haven’t gone through a surgery but want to share your experience with thyroid hormone supplements will be appreciated. Thank you and sorry that it was a lot of questions!!!
Thank you for responding. I hope everything continues to be well with her (and you). If you think of anything else, please feel free to post again. Every bit helps. I had had a nodule removed 18 hrs ago when I was 18, but I have most of my thyroid still and my thyroid hormones have always remained within the normal range. Now I am facing having the whole thing removed. Trying to find the best course of treatment with the least complications in regards to hormone supplements, repeat surgeries and of course my diabetes.
OMG!! That’s strange! I just saw another discussion thread with a woman who had some thyroid issues and I hope she is willing to share her experience here, But will understand if it’s not something she wants to talk about.
In 1994 I had severe hyperthyroidism (Graves Disease). First they tried to control it with thyroid suppression medication and that didn’t work. Then they gave me I believe two radiation treatments and it grew back. So they advocated surgery. There were some complicating situations involving one specialist not speaking to another and when the endo that was treating me originally heard I was scheduled for surgery he advised me to try one more radiation treatment. He told me that the surgery had risks (as mentioned above) and that it sometimes grew back anyway. They did the third radiation treatment and that was sufficient to destroy my thyroid. I’ve been on Synthroid (or the generic of it) ever since. I wasn’t diagnosed with diabetes until 2007 but about a year after I was I had to lower my synthroid dose as the diabetes for some reason made me more sensitive.
That was 17 years ago, and I’m sure the surgery was improved but at that time they explained it was a last ditch option, not a first choice.due to risks, possibility of not working and scarring.
How was the adjustments to the Synthroid? Did you have any symptoms of hypothyroidism after or any issues with balancing your levels? I am not terribly worried about the scar since I already have one from the nodule I had removed years ago. I’m really facing all the other issues with what will happen without a thyroid gland or part of one that won’t be sufficient enough. I’ll have to remember this post. My brother was just diagnosed with Graves Disease last November. He’s trying the suppression medication first. Thanks for posting.
It took awhile to adjust the dose, and yes, part of the process was going hypo and then increasing the dose a tad. I can’t remember how long it took initially, because it’s mixed up in my memory with all the time I spent trying to adjust doses on the thyroid supression meds. But the good thing is that until diabetes knocked my numbers off I stayed stable on the same dose, so that’s about a decade. It took a bit more fiddling after diabetes to get the dose right again (I don’t know if the diabetes itself destabilized it or it was losing 40 pounds). But once that got stabilized (about 2 years ago, whenever I test it is in range).
I can’t answer for diabetes and the surgery, but if you don’t get a response you might want to do a general post about undergoing surgery as I think the issues would be similar for a diabetic undergoing any surgery. I know the one thing I’d want to work out prior to any hospitalization would be having my doctor authorize for me to manage my own diabetes while there. Also getting some friends to bring me good food as I’ve heard horrible stories about “diabetic” meals.
I had my thyroid removed a couple of years ago because I had Hashimoto’s Thyroiditis, and the goiter was getting so big it was interfering with my swallowing (You can see it in my picture!). I had NO complications from the surgery, but the surgeon warned me that it can cause paralysis of one or both vocal cords, and that sometimes the parathyroid glands can be damaged. In my case, he had to take out one parathyroid, but transplanted it to another spot in my neck – I never noticed the difference, and the transplant has apparently taken. The other side effect is the loss of my upper half of the range of singing notes – I had been an avid singer, but no more – all I can sing is Tenor now!
Once the thyroid is gone, you must take thyroid hormone replacement for the rest of your life. But it’s pretty easy – pop a pill and forget about it. The only issue is not to take it near mealtime – it works better when taken alone. Thyroid hormone levels change slowly (as opposed to BG levels!), so they test every 3 months or so just to be sure you’re on the right dose. They start out with an "average"dose, which is pretty close to what works for most people, and adjust up or down from there. Again, I never had any real problem with it, because I was never seriously high or low.
As far as diabetes, I had my pump on the entire time of the surgery, and they pretty much left me alone to handle it myself. It didn’t make much difference for me, because I had been hypothyroid and on medication for years, but you might want to test more frequently for a few weeks to be sure.
The best thing to remember is YMMV – your mileage may vary – each person’s experience will be different, and just take precautions to make sure your diabetes is handled properly in the hospital.
That’s a good idea about posting one on surgery in general. I have had sine hospital experience while diabetic, though not because of surgery, once from being I’ll and when I gave birth to my children and the diabetic meals were like eating corrugated cardboard! I did remember for the birth of my son and brought in snacks and juice and diet soda.
I test a lot, but I think you’ve reminded me to maybe journal better during the initial phase of everything. I am hoping that my diabetic endo will be involved in checking on me at the hospital just to make sure that they are doing the appropriate things. I know each person is different, but I’m a person who works better after hearing or reading other people’s experiences. My brain has to sort it out in its own way. Thanks for replying.
My total thyroidectomy was done in 1990. Dr. was checking my neck for swelling during a cold. Then I had aneedle biopsy that was suspisious. Next thyroidectomy for cancer. They checked out and found some iin my neck lymph nodes too. Had outpatient and heavy duty inpatent radiation. I had to take cytomel and go off synthroid for some of my post op thyroid scans. I’m not sure if that’s still necessary because of synthetic TSH. Been taking Synthroid for the rest of my life(My endo says for this particular med the generic isn’t as effective). It took a while for my relocated parathyroid glands to kick in. I’ve been through several thyroid scans in the past. There is a group THYca on the web for people dealing with thyroid cancer. Due to some “strange test results” recently I had to up my dosage of synthroid to bring my numbers back in range. I developed my diabetes several years after my thyroid problem.
In 2004 and I was diagnosed with very aggressive breast cancer. When I had my PET scan to see if it had metastisized anywhere, they found a totally seperate papillary carcinoma. Because the breast cancer was very aggressive and thyroid cancer slow growing, I had to finish all my breast cancer treatments before I even started my thyroid treatments…
March 2004 had pre-op chemo and the oncologist had never given my “new” chemo… ( I was a nurse and wanted the best… 2nd generation with less heart effects), so he overdosed me 27 times the amount… Now chemo is designed to take you to the point of death and then bring you back… 27 times too much is very bad… I almost died and have permeanent heart and lung and kidney damage from it. I then had a lumpectomy and then 7 weeks of radiation. I finished all my treatments in September, but it was a ROUGH 6 months… Plus I was married to a very abusive man. Very traumatic time.
Then in November I went in for total thyroidectomy. They had to take the whole thing because my tumor was right in the center. IF AT ALL POSSIBLE KEEP AS MUCH AS YOUR THYROID AS YOU CAN!!! Two of my parathyroids were embedded in the thyroid tissue and the other two clinically died. I spent 9 days in ICU at UC Davis Med Center in full blown tetany. I almost died several times from heart failure. I had a LONG< LONGI LONG< LONG< LONG< recovery. I decided NOT to do the I131, which is the radiation. I had a HELL off a year and withdrawing off my thyroid meds was NOT on my agenda. If any residual cells are suppressed with meds, and you have your thyroglobulin level taken regularly (should be undetectable)… then you will be fine and not exposed to that radiation that increases dramatically your chance for leukemia.
It took them (not me) years to figure out I can’t tolerate Synthroid so I finally switched over to Armour Thyroid. Still my endo wanted me under medicated. Then the greatest thing happened. The lady at my pharmacy suggested I buy two months at a time cuz it is less expensive than my Co-pay, but low and behold it doesn’t show up in computer… So I had tons extra… so I started self medicating. That was about 6 months ago. I am for the first time in 7 years feeling normal. I have gained 120 pounds in the last 6 years. So I have a long recovery in front of me.
Sorry, this is SOOOOO long… I would be happy to tell you anything you want to know about being without a thyroid, but I was not diabetic at the time, so I can’t talk personally about that. I am a surgical nurse though and we have many, many patients every day that have surgery and do fine. Blessings and good luck with your decision. Suz
I have Hashimoto’s thyroiditis and I have cysts and nodules galore on both sides (five large ones on one side and seven on the other, plus lots of tiny ones too small to count.) I had one really big fluid-filled cyst (about the size of a large cherry tomato) which has been drained three times and has sort of settled down now (about the size of a grape now).
They said that if the nodules and goiter bothered me (e.g. made it difficult to swallow, etc.) I could have thyroid surgery, but that a thyroidectomy has a high risk of damage to the vocal cords. I don’t know the current statistical risk, but at the time I decided against it. It’s not that noticeable and I’m a musician, a singer and quite chatty, so losing my voice would be a nightmare I didn’t want to risk.
I’ve been on Synthroid for about eight years, and the only time I have hypothyroid symptoms is when I forget a pill – usually I’m FREEZING to the center of my bones the next day, no matter what the room temperature or how much I bundle up. So I know that the Synthroid is doing its job. We haven’t adjusted my dose in six years.
Wow! Breast cancer and thyroid cancer at the same time!!! And you’ve come out the other side to get diabetes. I appreciate the details in your post. Combined with all of the feedback from the others here, it really gives me something to chew on. I had a nodule on the left side that was taken out when I was 18 years old. It was benign. They only took the nodule and some surrounding tissue. So I have never been on hormone supplements for my thyroid. Now I have a complex cyst that is at the base of my neck on the right side in the front that is pretty big, about 1 1/2 inches and I have a 4mm nodule that is on the right side. If I have the right half taken out, my chances of having another surgery in the near future are pretty good. Plus I won’t be having a full half of a gland left. I was thinking it would be easier to take it all out, but I am not so sure now. Am suppose to have it biopsied soon. Would appreciate your thoughts if you had the time.
I had a thyroid scan and several needle biopsies. I get follow-up ultrasounds regularly to compare to the previous ultrasounds. So far everything has looked quite benign to my doctors and I trust them on that.
My sisters and my niece also have Hashimoto’s. We feel pretty confident that it’s benign, given the family history, etc.
I just found this on-line (see below). I didn’t fit any of the high-risk items at the time of diagnosis, and none of my nodules were “cold” on the scan – that’s good. ;0)
Good luck with your difficult decision. I hope everything goes well.
The Following Features Favor a Benign Thyroid Nodule:
Family history of Hashimoto’s thyroiditis
Family history of benign thyroid nodule or goiter
Symptoms of hyperthyroidism or hypothyroidism
Pain or tenderness associated with a nodule
A soft, smooth, mobile nodule
Multi-nodular goiter without a predominant nodule (lots of nodules, not one main nodule)
“Warm” nodule on thyroid scan (produces normal amount of hormone)
Simple cyst on an ultrasound
The Following Features Increase the Suspicion of a Malignant Nodule:
Age less than 20
Age greater than 70
Male gender
New onset of swallowing difficulties
New onset of hoarseness
History of external neck irradiation during childhood
Firm, irregular, and fixed nodule
Presence of cervical lymphadenopathy (swollen, hard lymph nodes in the neck)
Previous history of thyroid cancer
Nodule that is “cold” on scan (shown in picture above, meaning the nodule does not make hormone)
Solid or complex on an ultrasound
Even though it left you with a lot of health problems. And I’m glad you have no brain damage! Keep up the good work!