Life after total thyroidectomy after papillary cancer

Almost like reading about my symptoms and experiences. The most incredulous thing is the oncologist keeps saying he does not recognise any of my symptoms and the endocronologist said she could not help me because I do not have a thyroid gland.

I got much better after I got liothyronine, the active form of thyroid hormone. Just because your levels are "fine", it does not necessarily mean they are correct. Many doctors believe that as long as the thyroid blood values are within the reference levels, everything should be fine. If your T4 levels are high and your T3 levels are low, like mine were, you might be helped by adding the active form to your medication. High T4/low T3 is a symptom that your body might have difficulties converting T4 to T3.

Unfortunately I still have problems with seriuos memory issues, cramps, debilitating fatigue and tingling in fingers and lips. And, like you, I can sleep up to 18 hours a day. And still be so tired I cannot leave the bed.

But I discovered something today that might be the reason to these difficult symptoms. Hypocalcemia is a common side effect of having the thyroid removed; up to 49% have temporary hypocalcemia after thyroidectomy. Most get back the function after a few months after the parathyroid glands got healed (if they got harmed during the surgery). But if the surgeon by mistake removed one or more of the four parathyroid glands during surgery, then the hypocalcemia might remain.

I remember my surgeon saying that he removed all the glands he could find. Looking at my symptoms, it might very well be so that he removed the parathyroid glands as well. I find it so strange that none of the doctors I have seen since 2014 could identify that I might have problems with hypocalcemia, since it is such a common problem. I have repeated my memory and cognitive issues, the tingling in fingers and lips, the cramps and the unnormally long sleep periods every time I have seen a doctor or the oncologist, and still they keep repeating that they do not recognise any of my symptoms.

Please take a look into hypoparathyroidism and its side effect hypocalcemia. Maybe you can find something there that might help you.

I tried to send links, but as a new memeber I was not allowed. Maybe I can add them at a later date.

Good luck.

I experienced hypocalcemia after my thyroid removal. It was pretty severe with all the a symptoms mentioned. First round of attempts to help were taking several Tums daily , especially when having cramps , as they are a natural source of calcium . and then eventually we had to be more aggressive and started other medications.

I had my right side thyroid removed in 1988, and I just learned after an ultrasound it grew back plus before it has a triad 3 nodule which they labeled as mildly suspicious. That is the reason in 1988 why I had a solid nodule they removed the right side. Has anyone else have this happen and how long does it take for a thyroid to grow back.
They recommend to get another Ultrasound in a year to see if the nodule grew. It's a 1.9cm if it goes to 2.5 then get a f n a. Thanks

Concerning my last comment the solid nodule and right side thyroid I had removed in 1988 neither was cancer.

My understanding , and what was explained to me, was that our bodies are designed to continue to create thyroid cells .
This explains why the thyroid hormone is given to you in high "suppressant " doses ... basically designed to trick your body into thinking you have enough thyroid hormone and not create more cells.
It is based on individual body and your ongoing thyroid levels etc

Hi @garnet44, how are you doing? Did they do a biopsy of the nodule? Is it also benign?

Have you tried taking vitamin d with your calcium supplement? Sitting in the sun for natural absorption also. Vitamin d is essential for calcium to be absorbed so make sure any supplement has it.
Hoping it is better soon.

After almost a year since my Thyroid cancer dissection with thyroid removal and a lot of lymph nodes, I’m having stiffness, pain and numbness, my doctor told me I’m just paranoid but I’m trying to adjust to my medication too. I’m just feeling miserable.

That is a hard thing to hear from your Doctor. I'm sorry you are feeling poorly. I know it can be very stressful and worrying to have major issues like this. Sometimes our minds are so anxious it even makes us feel worse. I'd try to find ways to reduce your stressor and how your body feels if there is nothing the doctor see he can do helpful. Try massage perhaps? I use warm baths with Epsom
salts every evening for reducing my pain and to help me sleep. Sleep is very important in healing our bodies and minds in stressful times. I suggest maybe taking action yourself and Research sleep routines online to see if you can identify some peices that might fight for you. Also consider finding someone to talk with about your fears. Doesnt have to be a therapist, a clise friend who is safe, a chaplain at the hospital or someone from a faith foundation. Talking about them helps our minds process them and removes the physical stress they can bear down on us.
Find one thing you love to do each day and do it.
Some of my simplest pleasures that bring me comfort is a cup of good coffee in "my" cup , a cup that brings back good memories and encourages me. Small but special thing.
I am praying for you and hope you are encouraged and feeling better each day.

If I was feeling miserable and my doctor told me told me I was just paranoid I would get a new doctor!
I was surprised when the endocrinologist at the cancer hospital only tested T4 and TSH when I was feeling miserable, however I think he is only interested in whether the cancer has come back. I am changing endocrinologists so I can get better followup for the issues and not just get told “Your T4 and TSH is all normal.” I am hopeful that an endocrinologist not affiliated with the cancer hospital will have more experience with the side effects I’m dealing with and can help me get the right medication level for my system. I will still be going to Endocrinologist at cancer hospital for annual scans but I want to have an endocrinologist who will focus on my entire system so I will feel better.
I have some of the same side effects that you mentioned and they are miserable! If the doctor thinks you are paranoid, maybe you can ask him to order a PET scan to rule out cancer ( put your mind at ease) and then consider going to another Endocrinologist…. Even if it is just to get a second opinion. The side effects of not having the right dose of medicine for YOUR system are miserable, however not having a doctor who listens is just as bad. Good luck!