To Beach, nice post, and you reflected very nicely the T3 T4 topic.
I have a feeling you know this, but you have been on Synthroid a VERY short period of time. You've barely been on it long enough to have a lab drawn. Getting the right amount is frustrating, and it takes time.
Of course an endo or other doc should listen to how you feel. Having said that, when you are getting the “right” amount of Synthroid, or other thyroid hormone replacement, generally, we feel pretty darn good.
My endo at an academic center, says that there are very few people who actually feel better on the combo. He said that adding T3 to Synthroid, done properly, the T3 must be taken twice a day, to prevent a rush and then a dump. and few patients were willing to do that. This pretty much reflects his thoughts about Armour, for the T3 dose is not divided in time. Having said that, there are people who have done well on Armour, like Gayle.

Gayle, your post is so helpful to folks beginning on this Graves' journey, or those of us who have been on it a long time. With people over 50, there is an added risk of atrial fibrillation (if too much thyroid hormone, or dumps of it) which is where that thinking came from.

In my own experience, my TSH is ALWAYS suppressed. Way back in my chart it says, “iatrogenic hyperthyroidism” which means it was caused by the medical profession. In other words, I was taking too much thyroid hormone for too long. On the other hand, my new endo and I have tried to slowly taper it over two years, and my TSH did not budge. But I became very hyPO
clinically, and could barely lift my head off the bed, and developed gastroparesis. So now I am on 125mcg. Was on 150mcg for years, and we tried to decrease it, got to 77mcg. No good.

Our bodies, before Graves, did all this thinking for us. Now we have to have docs and ourselves figuring out what to do.
It can be very discouraging. But it all we have.
Shirley

Thank you Shirley; I love what you say here as that summarizes it well how this post RAI/TT thyroid hormone issue works.

What really hit me was when you said, “before Graves, our bodies did all this thinking for us.” It is not perfect science as I am realizing and we do have to rely not only on ourselves to stay healthy yet on a good doctor too. Which is where my battle is getting a doctor to really listen; getting there somewhat yet my current endo and I have this real love / hate relationship where I also know he hates to see me coming probably! Yet he has gotten me through some rough patches here and even if a very difficult doctor at times, he is very intelligent and knows this thyroid business. It would be nice if there were more “thyroid specialists” in this country.

Well yes, I started 75 mcg Synthroid August 20 as I was at the point of feeling like death of a TSH of 54. I knew it was coming yet my endocrinologist would not test me earlier than the once a month he has been doing thus far. I thought I was going to die, yet of course not, yet I felt like that and my potassium levels had gone low too.

So 75 proved to be too little so I got increased to 100 mcg; then TSH was 30 yet the FT4 was 1.08 in range (ranges .85-1.77). So we discussed increasing me somewhere from 112 - 125 mcg as my endo goes by the AACE recommendation of 1.6 mcg x kg of weight. Of course for the beginning as I know that doesn't work later on when dosages are tweaked according to lab values and how the patient feels (latter which my endo as I mentioned does not go by!). So only on 125 mcg since September 20th; yes too short of a time yet feel just okay and the weight thing is my issue; I only have concerns over that because it made my cholesterol skyrocket and my blood pressure went a little high which I never had issues with bp in my life and my sugar is now borderline; all over night now going hypothyroid and on this Synthroid stuff. Yet I feel well let's be patient as you said Shirley it takes time. I for one do not want to go on a bunch of medications for now newly founded problems or like trading one problem for another.

I even read on a site of an internist up north where I came from (US) who specializes in using natural thyroid hormone yet is still a regular MD and teaches at a Medical University by Rutgers University, and he even said if people are over “50” to be very careful with even thinking about using T3 due to what you talk about potential for afib and then there is that issue of bone loss over time. There are cases of people on T3 for a while where this has occurred and I do realize myself who is into natural more this is very tricky business. So I hope that the T4 alone works for me in time and that I will hopefully lose the weight as this is not a superficial thing for me at 53 as it is just for health reasons and I need to give this thing more time; because I do not want to go to just some doctor who is willing in time to give me T3 who really does not know how to dose properly.


I always find I get the best advice from people who have been living this being on thyroid hormone post RAI or TT for a very long period of time. You all put things into perspective. Wish I could go to the conference yet cannot due to circumstances yet hoping there will be videos like with 2011 conference.

That is very interesting your experiences Shirley; thanks for sharing. The fact too that you became hypo too with TSH staying low and developing issues. I hope you are feeling much better now….beach

@faithastar - Hello and welcome! If you scroll through the last couple of pages of posts, there are actually several different threads from patients asking about RAI vs. thyroidectomy…you can check those out and read personal experiences from other patients.

You might also look at the “treatment options” thread in the announcements section of the forum, as that includes a couple of good resources that go through the pros and cons of all three treatment options.

Finally, a quick note that total thyroidectomy is currently the preferred procedure vs. removing just part of the thyroid gland. The concern is that there is a higher risk that hyperthyroidism could recur after a partial thyroidectomy.

Take care!