First of all I would like to know if any of your endocrinologists also rely on weight to prescribe T3 regardless of blood tests
A year and a half ago I had thyroidectomy and so far I have not felt well, my husband found this forum recently and we are reading and learning from several experiences to make a decision on our own about how much levo I should go down and with what dose of T3 to begin, none of the 6 endos I have seen has prescribed T3, they seem to be scared of me having cardiac consecuenses although my heart is ok, so we will have to start by trial and error.
It should be noted that one of the reasons why my thyroid was removed was due to medical malpractice. The doctor changed my prescription of 100 mcg of levothyroxine to the duo of 100 mcg of levo / 20 mcg of T3 and that caused me iatrogenic thyrotoxicosis, but again, at that that time I still had my Thyroid and several nodules, apparently some of them were already hyperactive and others were not.
Now the situation is different since I don't have the gland.
I have already tried many different doses of levothyroxine during this time and I never get to be within the ranges, or I am overdosed or low dose.
According to my blood tests and symptoms we are pretty sure that I am not turning T4 well into T3, we just need a guide to start the change.
I am at my lower limit of my T3 values and according to this forum I must be at least in the third quarter.
I really appreciate if anybody has an advice.
In my last blood test I was hyperthyroid.
these are my last results below taking 4 days 137 mcg and 3 days 125mgc (levotiroxine)
TSH 0.091. RANGE .270- 4.200
TOTAL T3. 0.82 RANGE 0.80-2.00
FREE T3. 2.83. RANGE 2.00-4.40
TOTAL T4. 10.05. RANGE 4.60-12.00
FREE T4. 1.67. RANGE. 0.93-1.70
Thanks in advance for your help.
Hi Lois71, welcome to the forum.
To be brutally frank, I really doubt that adding 20 mcg T3 to 100 mcg levo caused thyrotoxicosis. I'm no lover of doctors, but doesn't sound like we can blame them for that. Sounds more like either one or more of your nodules were independantly producing thyroid hormone, which has nothing to do with your exogenous hormone intake; or you had Hashi's. In any case, those labs you've given us in no way indicated hyperthyroidism. Your FT3 was right at the bottom of the range. Had you been hyper, it would have been about five times the top of the range. Even your FT4 is still within the range. But, you are correct, you are a poor converter. Doctors tend to fling the word 'hyper' around with abandon, without any real understanding of what it means!
So, to begin with, you cannot ever know what dose of T3 you are going to need in advance. You follow the rules for taking hormones: start low and build up slowly. For T3, that means starting with 1/4 pill of T3 - pills come in 20 or 25 mcg, don't know which you have - and reducing your levo by 25 mcg. You can then increase your T3 by 1/4 pill every two weeks - leaving the levo where it is - until you get to one whole pill. Then, hold for six weeks and retest, see where you are and how you feel. If you still feel bad, you may need to continue increasing, but more slowly, so that you don't miss your sweet-spot.
Once you're taking T3, the most important number is the FT3. The TSH becomes irrelevant. But, you might also like to try testing your nutrients: vit D, vit B12, folate, ferritin, because it is very important to have optimal nutrients for your body to be able to use thyroid hormone correctly.
Thank you very much for taking the time to answer me.
I am surprised by what you mentioned about it was not iatrogenic thyrotoxicosis, as they always told me, and it seems logical to me that what you are saying about that it may been a hyperproductive nodule.
In fact, I had hashimoto and my thyroid was super full of nodules.
I already had vitamin D and B12 and I am within the range.
I just need the ferritin test.
I am looking forward to start taking T3 because I have spent many years feeling bad even before thyroidectomy, which I now understand was the best decision since due to the nodules doctors could no longer control my dose.
OK, so you have Hashi's? That could change things. What were your levels when they said you had thyrotoxicosis? Do you know?
Yes it was when I had Hashimotos, before the surgery
I 'll look for that results and let you know
Hi grey goose.
Finally yesterday I started with the 5 mcg of T3 and went down from 137 mcg of levothyroxine to 112 mcg. I felt positive changes during the day: less mental fog, a little more energy, the pain in the neck decreased, I regularly took a nap after eating but felt I did not rest and yesterday also improved.
What I did notice and disturbed me a bit is that at night, I felt sleepy but could not sleep, which made me remember when I was added 20 mcg of T3 and had "thyrotoxicosis". (I couln't find that lab results yet) in the end, I don't know what time I finally fell asleep.
Today I decided to lower the dose of levothyroxine to 100 to see how I react.
By the way, could you give me some advice about whether I need vitamin D and B12? These are the results of my last blood test:
Vitamin D 25 (hydroxy) D3 / D3 (calciferol)
51.12. range. deficiency <10.00
Vitamin B12 (cyanocobalamin)
405.0. range. 187-883
I think that reducing the levo a second time was a wrong move. Levo should only be changed by a maximum of 25 mcg every six weeks. You can hardly compare the feelings you had on 20 mcg T3 - which was far too much to start on, anyway - with what happened on 5 mcg. Obviously your body is going to need time to adapt to the change, but by reducing you levo a second time, you have just increased that adaptation time. So, anything you feel today is not going to be typical of how you're eventually going to feel.
Your vit D is too low, yes. Should be higher, but I don't know that much about vit D to be able to tell you how much to take.
B12 should be over 550. Did you have folate tested? I think it would be a good idea to take 1000 mcg sublingual methylcobalamin (not cyanocobalamin) daily, plus a good B complex - one with methylfolate. When you've finished the pot of B12, you'll probably be OK on just the B complex as a maintenance dose.
In fact, it used to take 137 mcg 3 days and 125 mcg 4 days, in the talk we had a few days ago I was recommended by you to go down 25 mcg, I mean, stay at 100, which is what I started today.
The reason I went down to 112 mcg in the first place was because I feared the change was too much.
Regarding vitamins, I appreciate the guidance, I will investigate how much vitamin D I should take.
Thank you for your willingness.
If you took 137 mcg 3 days and 125 mcg 4 days, reducing by 25 mcg would mean taking 112 mcg 3 days and 100 mcg 4 days. Not 100 mcg every day.