Very low TSH, T4 & T3 in normal range, wondering if I should let them remove it?

[sunny5357]

ere within normal range. In 2012 I saw an endo and he suggested having RAI due to a diagnosis of osteoporosis. I did have a rapid heart beat at time, and some pvc’s but I have had that off and on for about 20 years.  My endo retired in 2016 so my regular internist was monitoring my levels. TSH stayed very low but the others still within normal range.  This January my heart rate went to 170 and I had A fib. I went to the ER, they admitted me for 3 days, no more Afib in the hospital, normal the entire time I was on the monitor. It happened again in January and once in Feb. I was also admitted, they did echo, stress test, cat scan, and heart rate normal the whole time I was in the hospital. I found a new endocrinologist and he said I have plummers disease and my TSH is barely detectable.   My recent labs done last week: TSH-.01 T4-1.3(.7-1.48) T3-3.9(1.71-3.7)  He suggested I have thyroid removed. The right side has nodules, hot and cold, the left side is enlarged significantly. Luckily we have a very good surgeon in here, Dr. Clayman that used to be at MD Anderson and is now in Tampa. He also suggested removing it.  In 2012 the endo put me on Tapazole and it was the worst drug I ever took. My entire body reacted violently to it. Chills, nausea, itching, every nerve ending and muscle in my body ached, the smell of food made me gag and I only took 2 doses. Needless to say I told the endo this is not happening and I stopped it. I felt like I had been poisoned. My new endo wanted me to take it to get the TSH up to do the surgery so I reluctantly agreed to try it again. They wanted me to take 10 mg 2x a day but agreed to try .5 first to see how I tolerated it. One .5 dose and same reaction. I called and said no, I cant do it. It also raised my blood pressure and heart rate. I could have been because of all the pain I was in but regardless no way was I trying it again. It took me 18 hours to begin to feel normal again. I was also put on Propanalol while in the hospital and it makes me feel horrible too but it does lower the heart rate. I’ve been on it for about 3 weeks and the longer I take it the worse I feel. It causes loss of appetite and major body aches and neuropathy in my feet and legs which I already have from stenosis in the back, but it makes it 10 times worse.  Now to do the surgery( IF I do the surgery) they want me to take PTU(never tried it before) for 7 days plus iodine drops. Take the PTU for 2 days, then start the Iodine drops along with the PTU, then schedule the surgery for right after I finish those. After reading all of the horror stories on here, I am not sure I want to do this surgery. I have always had trouble with many medications, my body does not tolerate them well and I see all of these stories about how miserable people are with no thyroid and how they never have a normal life again, trouble with the meds and getting levels regulated. It sounds like trading one nightmare for a far worse nightmare. I just don’t know what to do. I feel so sick from the beta blockers and have not felt normal since I started taking them. At least when I had the more rapid heart beat I felt normal most of the time. Now they added Eliquis because of the Afib, so more medications. I have a good endocrinologist and the surgeon is one if not the best in the USA, but I am worried about the after…… it seems many never have a normal life or feel right again. Any advice appreciated please.

[gimel]

As long as you have a good thyroid doctor that will treat clinically by adjusting Free T4 and Free T3 levels as needed to relieve symptoms, rather than adjusting your med dosage based on TSH, there is no need to freak out.   We will also be happy to help with any info you need.  

[sunny5357]

I had the surgery yesterday around 1:30. It took about 2 hours and around 45 minutes in recovery, then to a room. I came home around 3:30 today. I feel pretty good, start on Synthroid on 3/20. I saw one of the side effects is rapid pounding heartbeat which concerns me because I had it out to get rid of that. Pain was up there immediately after surgery when I woke up. They gave me a popsicle and took me to my room. My voice was hoarse but today is pretty much back to normal. Calcium levels were 70 last night and 73 today. I am on Citracal for a while and if I feel any tingling I am to take some Tums immediately. I was starving all evening after the surgery, must have been the pain meds. I could not get enough to eat. In the recovery room them gave me a little Fentenyl and in my room I got Ibufprofen, tylenol and Oxycodone. They sent me home with 12 Oxycodone but not sure I will need them. My scar is a bit larger than some due to the size of the thryroid and nodules in it. I also have a decent amount of bruising around the scar. I am icing it 20 minutes every hour for 72-96 hours then do heat. Coughing up the phlegm hurts but at least it is coming up.

[gimel]

We will be thinking of you tomorrow.  You have the most important thing going for you (an experienced surgeon that you are comfortable with) so I am confident it will go well.  

[sunny5357]

Thank you very much. I'm not so worried about the surgeon, people come from all over the world to go to him. It is the aftermath and getting the meds right that has me totally freaked out.

[gimel]

Your symptoms fit the description of Plummer's Disease.  Your test results are indicative of thyrotoxicosis.  When I did some reading I found this info from a study about current treatment.

"Surgical treatment for Plummer's Disease (hyperthyroidism) results in rapid, reliable resolution of hyperthyroidism and removal of the nodular goiter with low morbidity and no mortality. RAI is also safe and effective, usually requiring a single dose, but the results are delayed and it usually fails to resolve a goiter."

So it seems that surgery is the best option.  For that I have no idea why the doctor wanted to get your TSH higher before surgery.  

As for your concerns about post-surgery, there is no need to expect anything but a normal life.  It all depends on having a good thyroid doctor.   By that I don't necessarily mean an Endo, just a doctor that will  treat clinically, by testing and adjusting Free T4 and Free T3 as needed to relieve symptoms, rather than based on TSH levels.   Also you want the doctor to be willing to prescribe T3 type meds like Armour Thyroid, NatureThroid or Cytomel, so that you are able to get both FT4 and FT3 optimal.  So I would ask your doctor upfront if he is willing to do both.  If not, then you will need to find a good thyroid doctor that will do so.  

Since you mentioned osteoporosis,  “Thyroid hormone does not cause bone loss; it simply affects metabolism and therefore the rate of the current bone formation or loss. Bone loss or formation is related to combined effects of “sex steroid, DHEA, Vitamin D, and growth hormone levels.”   Thyroid hormone just affect metabolism, which then affects the rate of existing bone loss or formation.  

Please stay in touch and we will be happy to help with any further info you need.    

[sunny5357]

Thank you for responding, yes it is Plummer's. It was mainly the anesthesiologist that want some pre=treatment due to the recent bouts of A-fib since January.  I can't take Tapazole so they decided on 50 Mg of PTU twice a day and lugol's iodine 5 drops 3 xx a day. Surgery us scheduled for this Wednesday, March 13th. The PTU makes me feel awful even though it is a very low dose but that is what the endocrinologist and the surgeon agreed 0n. My endo, like you, really felt no pre-treatment was necessary because my t4 and t3 were still in normal(subclinical) range but the other 2 were worried about the TSG of .001

[sunny5357]

Surgery tomorrow, nervous

[gimel]

There is a lot to discuss, but first have you ever been tested for the possibility of Graves' disease.  The usual test for that is  Thyroid Stimulating Immunoglobulin  (TSI)?

[sunny5357]

Yes, and it is not Graves.

[sunny5357]

Over the last  10 years I have had  labs for levels every 6 months Ultra sounds of the thyroid once a year and 2 uptake scans when they considered doing RAI