Post Throidectomy with complications
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| Mon, 07-10-2006 - 1:51am |
Hi
I am new here and have never been a part of anything like this but am anxious to share my story with people who may understand. I have had such a hard time. I was first diagnosed with a thyroid nodule when I was 19 that was so big. An endo in LA biopsied it in his office and said it was fine. It wasn't until after my first baby was born when I was 27 that I noticed multiple nodules. I was diagnosed with a multi-nodular goiter and post partum hypothyroidism. I was so stressed out with a new baby thinking I may have cancer but the biopsy came back benign. I started seeing a local endo after my family doctor referred me who belittled my problems and told me I should see I shrink instead of him. I was concerned because I could constantly feel these nodules in my neck-especially when I swallowed and was confused when he wouldn't order any specific tests to moniter this. He would just feel my neck and send me on my way $175 dollard later. 3 years later and after another baby, I decided to find a new endo but since I live in a small town he was a 2.5 hour drive away. This was the only other option for me but it seemed worth it instead of paying a small fortune to have this other local doctor make me feel so worthless.
Since I was a new patient, this new doctor had me under go all these tests to get me established. I had an ultrasound and FNA's and to my shock the FNA came back indeterminable- enough for him to recommend a total thyroidectomy because I had so many nodules on both sides. I was in shock after hearing for so long this was no big deal. I decided after a lot of deliberation and some other doctors opinions to do the surgery and researched a surgeon who has a great success rate and does 100 or so thyroidectomies a year. He seemed like the right man for the job. According to him, when I was in the hospital, the surgery went great. I told the nurses I felt a strange tingling sensation that was persistant in my fingers and lips but no one took me seriously. I thought it must be no big deal. Well the next day in the afternoon, I had a severe reaction to the low calcium levels in my blood and had major tetany. It felt almost like a sezure- my whole body went numb and tingly and seized up. I couldn't even open my hands! I freaked out of course and all the doctors rushed and explained I was suffering from low blood calcium and my para thyroids must be in shock. They made me stay in the hospital 5 nights until my blood calcium levels were stable. The final pathology came back benign with a small microscopic spot of papillary cancer. The doctors said I was cured of that which is good but 3 months later my parathyroid hormone levels are undetectable. The pathology stated they found fragments of 3 glands. We are hoping the fourth one is there and in shock and the others will regenerate over time. I take two doses of .5 calcitriol and 4000 mg of calcium carbonate and 550 of magnesium gluconate a day. If I miss this at all, the tingling and muscle tightness comes back. I am 30 years old and am worried this will be hard on my body (liver and kidneys as well as bone density) to continue like this with all these meds just to get through the day.
Does anyone have any similar experiences or advice? According to the doctors I fall in the less than 1% range for the complications I am having. Just my luck :) I am feeling so alone- I don't know anyone with these issues. Not to mention I am so hypo thyroid and they keep uping my synthroid but this is taking forever to find the right dose. With a 12 month old and 3 year old I need energy! I feel like I pregnant again- hormones all over the place and not to mention the weight gain and ugly scar on my neck that is still stiff and red and bumpy 3 months later.

Hi Nicole,
Hi Nicolegk,
Welcome to our board and thank you for sharing your story.
We have another member here that has been through thyroid cancer surgery and has some understanding of the calcium issues involved.
Hello nicolegk,
Your story sounds very familiar to me, although we had different complications in the beginning. I had only one nodule, and it did not test ca at all, but the actual pathology test one week later after my partial thyroidectomy showed it to be cancer. Well, the surgeon told me he got it all, but like you, I lost trust for a long time, and 6 months later with normal routine testing, they found that I still had cancer and had to go back for a total thyroidectomy. Now, unbeknowist to me, the first surgeon finally told me that I had to have two parathyroids removed, a clavicle cord, I have a completely paralyzed vocal cord, etc. Well, to be honest, I really didn't know what all this meant at the time. I barely knew what my thyroid was let alone parathyroids. I have not heard of the 3 parathyroids rejuvenating themselves, but have heard of a parathyroid transplant done at time of surgery and it was successful. But you didn't have that done, and neither did I, and I am on extra calcium a day although not as much as you--I am on 1500 mg daily, and have to take it at intervals of 500mg 3 x's a day or it will all just flush out of the system. I have been doing this for 10 years, and I am getting along just fine. I also have to take Levoxyl, and I am doing fine on that also and I don't have any thyroid left at all as the minute parts that are left after surgery were destroyed by the RAI treatments that I had twice. I also had a seizure while in the hospital for one of these thyroid treatments because I depleted my calcium/magnesium/potassium from drinking too much water, but they told me to drink lots and lots of water to flush the RAI out of my system. Well, I've had quite an experience, and can tell lots of stories, but if you take your synthroid and your calcium and whatever else they prescribe for you faithfully, I feel that in due time you will feel as good as new again. Be aware that this is a lifelong treatment and you can't skip seeing your endo as he will be the one in charge of your case and also prescribing your meds for you. You just take care, do what your told, think positive, and you will eventually be as good as new. I wish you well my friend, and glad you found this board and shared your experience. You will find that many others have stories that they can relate also. My prayers are with you, hugs, Bea
Thanks so much for your thoughtful and kind words. I don't know if it is my hormones these days but your message brought tears to my eyes. No one seems to be able to relate to me through this ordeal and my husband is wonderfully supportive but I know it is different when someone has been through the same thing-which he hasn't. This has been very hard to adjust to as I have always been very healthy. It just baffles me that I have fallen into this small percentage of people who may have life long hypocalcemia after what was explained to me as a very routine thyroid surgery with very little complications if you go to the right suregeon-which I thought I did. He does 100 of these a year and hasn't seen a case like mine in 3 years. Yikes! I guess my throid was so big- I had a multi-nodular goiter- it was hard for him not to nick my para thyroids. He says they are stunned. They only saw fragments of them in the biposy and they hope they will start working again. I guess I am starting to freak out because it has been 3 months and still no change. I tried taking less calcium the past two days and had pretty bad symptoms today with tingling and muscle tightness- so I am not recovering as of yet. It makes me feel better to hear your story and that you have been doing well with a similar situation for 10 years now. I am only 30 so it makes me nervous that I might have to do this for a lifetime. As for my synthroid they are uping my dose again so hopefully that will help me keep up with my beautiful energetic children who need me! Thanks for sharing your story- it truly made me feel better. Take care- Nicole
Take Care
Nicole
I do have a little word of advice here for you and that is DO NOT cut back on your calcium unless it is ordered by your dr. We are born with 4 parathyroids (most of us anyway) and when some are missing, then your remaining parathyroid needs help in adjusting your calcium intake and sending it to the right place so that your bones don't start getting brittle. You will not only be tested for calcium in your lab work for the rest of your life, but also will be tested for your vit. D intake, as you need that also for the bones. I take less calcium than you at the moment because I still have 2 parathyroids left and not one like you have. Tingling in the hands and fingers can definitely mean low calcium--please don't fool around with this--3 months isn't a long time, and you will, just like the rest of us that have gone through this, get used to taking the calcium every day.
Don't give up, don't despair, and stay positive, and as I've told you I do understand what your going through and the hardest part is in the beginning and trying to realize that this is a lifelong medical condition--but also remember that you can live a very healthy life with this condition also.
I felt the same way you are feeling about people that didn't have this just didn't understand. Well, look at us, we are whole and in one piece and most people don't even know where the thyroid and parathyroids are, never mind how much control they have over the whole body. My husband was and still is very supportive also, but I do know what your saying about "they haven't been through it". I hope you can make chat some night--even one or two little pointers sometimes comes in handy. Hugs, Bea
i finally fought my way into an ultrasound when i began choking when i ate. the u/s tech found 4 large solid masses on the right side and my right thyroid was the size of a lime. the nodules had invaded my throat. the doc did not even do a biopsy, just decided to do surgery the next week because he said the size and consistency of the masses were consistent with cancer and they had to come out anyway because of the complications with breathing they were causing. well, the day after surgery i was home and got a call from the doc that the lab had called and it was cancer, all of it, and that i had to come back in 3 days and have a total. he went through the same scar, but the second time i had to have a drain tube because there was still a lot of fluid and swelling from the first surgery. about a month later i was still feeling horrible physically, like i had cancer,lol! so my doc checked my levels and they were like 9.43!! so, off i went to the hospital and into isolation away from my children for 3 days to do the radiation therapy. it was horrible because my scar was still very tender and then the radiation made my throat very swollen and sore. fast forward to today( mind you all this started in march of this year) and i have had my synthroid upped 3 times so i am on 150mcg now and still my levels are too high, over 5.5. my weight is still not back where it should be despite the fact that i have no appetite or i am throwing up what i eat. i have no energy to take care of my self, much less my 6 children( ages 1yo-13yo) soooooooooo, i go back on aug 4 and there is talk of possibly doing another radiation treatment or possibly a round of chemo this time.
so, i understand how you feel and after all this time my scar looks like crap, lol!!! the initial scar is looking better, but my drain scar is horrible. being an african american woman we tend to keloid and so my scar is thick and ugly and there for life, but what can i do? we will be all right girl. we just have to pray and believe that our struggle is for something. if not for us then for someone else.
Hi Nicole,
It's amazing - I've finally found someone with the same rare problems that I have. Yes, we are one of a very, very few with our hypoparathyroidism and hypocalcemia - and, of course, hypothyroidism.
I was told I had thyroid cancer of the left lobe in 1992 while my first husband was in his final stages of lung cancer. I couldn't tell a soul that I was struggling with this cancer because everyone needed to be strong for my sweet, and suffering husband. When I lost him 6 months later, my cancer had grown from pea size to the size of a large lemon. The left lobe was removed and I was placed on Synthroid, and went happily on my way.
In 1998, the cancer reoccurred in the right lobe and that was also removed. The surgeon kept the parathyroids tied off for too long and I have only one functioning parathyroid at present. I can fully understand what you mean when you say "tingling, tetany", etc. I had to go by ambulance to the ER a year ago because I was in full tetany. I got too hot helping my husband outside. When I arrived in the ER, my hands and arms were completely drawn, my feet and legs were drawn, my mouth had drawn into a tiny circle, my abs were beginning to become hard and I knew the next step was that my heart would stop. Thank God I had the presence of mind before we left my house to take a handful of my calcium pills. The docs at the hospital diagnosed me with a panic attack, prescribed me with Xanax and sent me home, saying I had hyperventilated. That was in Florida.
I now live in Tennessee and have remarried and am covered by our retired military insurance.
Let me tell you about my experience with Calcitrol (and my research).....I was taking Calcitrol (same as Rocaltrol)...and was having an extremely difficult time maintaining the correct level of calcium. When I reserached the Rocaltrol, I found out that it actually inhibits the parathyroids from regaining full function. I am a retired R.N. and went with this information to the endocrinologist that had me on the Rocaltrol. He finally admitted that he had me on a "study program" and that I should be honored that would make him published and me a very rare study victim. Boy, I unloaded on him!!!!!
To make the story short, I went back to my original surgeon, he helped me get off the Rocaltrol and now I am taking merely a calcium supplement with Vitamin D (I buy them at Sams, 600mg. Calcium plus 200 mg. Vitamin D). I am still struggling with the hypocalcemia and the hypothyroidism. I am going to a new Endo the 26 of this month (Oct. '06) at Vanderbilt University in Nashville. I am in high hopes that she will be able to get me on the right path. I am having many complications and am afraid I've developed an autoimmune problem too.
At any rate, NEVER stop taking your calcium!!!!! You will only do damage to your system. But DO check into the possibilities of getting off the Calcitrol or Rocaltrol as I did. You can manage your hypocalcium with the appropriate amounts of Calcium (But You HAVE to have VITAMIN D along with the calcium - which is what the Calcitrol or Rocaltrol is otherwise your body will only flush the calcium away).
Please let me hear from you! I'm so glad to find someone with the same malady as I have. We are a rare breed.
My home email address is BonneyRu@Charter.net. I'd love to talk more with you.
Bonney_in_Tennessee