20867016 tn?1551836666

Had TT on 3/13 and feel horrible. Is this normal?

3/13 had TT for Plummers disease because it was getting enlarged and the hot nodules were causing very rapid heart rate and A fib since January. My TSH has been super low for 5-6 years but the T4 and T3 were in normal range but since 2012 they have been creeping up. Once the T4 went past normal to high the A-Fib began.
Surgery was uneventful, home the next day, calcium levels ok. This past Monday I was in the Er and they admitted me overnight for observation because my blood pressure went up. Heart rate was fine but BP was up there. They think it was the prednisone they gave me to take after the surgery so that was stopped and they did a 4 day fast wean of 1 pill 2 days then ½ for 2 days. The BP is now fine.

My labs before TT on 3/7 were:
TSH: .01
T4: 1.35
T3: 120
Surgery was 3/13, labs done 5 days later at hospital were:
TSH: .04
T4: 1.04
T3: 54 (Low (86-142)

I was supposed to begin Synthroid a week post surgery but they said to go ahead and start it Tuesday so I have had 3 so far.
I feel awful!!! I felt much better before even with A-fib, and the rapid heart beat. That was bad but at least some of the time I felt normal. Now I feel like another person.  I have brain fog, my vision is weak, the body aches are horrific, my feet are freeing half the time, my neuropathy in my feet from my back is intensified x 10, I feel tired but not sleeping well, I just feel miserable and am regretting this, wondering what I have gotten myself into. I put this off for 5 years because I was afraid of this, I have read the horror stories but once the A-fib began and I was in the hospital 4 times since January, the endo, cardiologist and PM doctors all suggested it be removed. I could not take Meth or PTU, both made me sick and the side effects were intolerable. I had it done at Tampa General Hospital by Dr. Clayman and Dr. Roy so I had great surgeons and the scar is barely visible but the thyroid was large and pretty ugly, filled with nodules, both hot and cold. They also removed 2 lymph nodes just in case. The labs are not back yet but they said they really don’t think there is any cancer and there was none when I have biopsies done in 2012 so hoping that is the case.
Is it normal to feel this bad? I talked to my endo today and I have labs on 4/1 and see him 4/16. He said it takes 3-4 weeks for the Synthroid to really begin to work. I wish they had given it to me right after surgery but they wanted the excess hormones to get out of my body first. I had not expected to feel this bad. Sad  ☹
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Avatar universal
Obviously your Total T3 is terribly low.  I expect that the biologically active thyroid hormone Free T3 is also way too low and is the cause for you feeling so bad.   Hypothyroidism is correctly defined as "insufficient T3 effect in tissue throughout the body due to inadequate supply of, or response to thyroid hormone".   So it is the "TISSUE T3 EFFECT" that determines your thyroid status.  Insufficient TISSUE T3 EFFECT results in hypothyroid symptoms.  

Most doctors only prescribe T4 meds on the belief that T4 always converts to T3 as needed.  Scientific studies have shown this to be incorrect.    Studies have also shown that in order to get Free T3 to mid-range or slightly above, as needed by most hypo patients, required T4 doses adequate to drive Free T4 to the top of the range or above.   Doctors are reluctant to do this because of their fear that the attendant  suppressed TSH means hyperthyroidism so they want to reduce the med dosage.   All this is very wrong.  

A good thyroid doctor will treat a hypothyroid patient clinically, by testing and adjusting Free T4 and Free T3 (not Total T3) as needed to relieve symptoms, without being influenced by resultant TSH levels.   Symptom relief should be all important, not just test results, and especially not TSH.  If you want to confirm what I have said, just click on my name and then scroll down to my Journal and read at least the one page Overview of a full paper on Diagnosis and Treatment of Hypothyroidism: A Patient's Perspective.  

What dose of T4 were you prescribed?   The doctor is correct that it will be weeks before the T4 med has any significant effect.  That is because the half-life of T4 is about one week.  That means it will be 5 weeks before the T4 reaches over 95% of its final effect on serum T4 levels.    Even then it is unlikely that your Free T3 will be adequate to relieve your symptoms.   So, if it were me I would ask the doctor to add some T3 med to your dosage.  T3 has a half life of less than a day, so you would get some relief much sooner if the doctor gave you an adequate dose of T3 med.  

Along with that I would ask the doctor if he is willing to treat clinically, as described, rather than based on TSH levels?  For the long term, also ask  if the doctor  is willing to prescribe T3 meds like NatureThroid and Armour Thyroid and Cytomel.   If either answer is not, then you will need to find a good thyroid doctor that will do so.  

Also, don't forget the importance of Vitamin D, B12 and ferritin.  You should ask for those to be tested also, so you can supplement as needed to optimize.
D should be at least 50 ng/mL, B12 in the upper part of its range, and ferritin should be at least 100.  
Helpful - 0
112 mg Synthroid
My surgeon said .5 Cytomel might not be a bad idea but my endo didn't mention it. He wants to wait for labs and when I see him on 4/16 in the meantime I have no clue if the T3 is even lower now than it was almost a week ago
It should be interesting to you to note that "estimates of average normal secretion for euthyroid humans are 94-110 mcg T4 and 10-22 mcg of T3 daily."  These amounts are approx. 2-3 grains of a desiccated type thyroid med.   Also, since you are taking only 112,cg of T4, the effect on serum levels will be much less, since absorption of thyroid med taken orally is not 100%.  

In addition, I don't understand why the doctor wants to wait until 4/16.  You are already having unacceptable symptoms and your FT4 and FT3 levels are sure not going to increase from the last set of tests, since you have no thyroid function left.  If the doctor is only paying attention to TSH, you need to make him understand that a suppressed TSH when taking thyroid med is a regular occurrence, due to taking the med in one dose, as compared to the continuous, low flow of thyroid hormone in the untreated state.  A suppressed TSH when taking thyroid med does not mean hyperthyroidism unless there are attendant hyper symptoms due to excessive levels of Free T3 and Free T4.  I would call the doctor and relate all this and ask him to reconsider adding some T3 to your med.  I would ask for 10 mcg to start.  If the doctor resists, then I would not wait until the 4/16 appointment, but would start now looking for a good thyroid doctor that will treat clinically, as needed to relieve symptoms, rather than just based on blood test results.
Avatar universal
I said same thing "why" did they delay giving my thyroid meds after my thyroidectomy ....I feel this is to blame for my hideous legs pains....regret not the word for how I feel.    I hope you feel better soon
Helpful - 0
How long did they delay yous Grace? Dr. Clayman is pretty respected across the globe, I just assumed they knew what they were doing to wait a week but my T3 levels dropped like a rock during that time.
Hi Sunny
My Endocrinologist delayed me for 2 weeks before they gave me 125mg of synthyroid and at that time I knew nothing about Cytomel (t3 meds) and wasn't even tested until later on after learning and getting advice here.  

Ive been on Armour Thyroid 2 grain since Aug last year it has combo T4/T3 in them.
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