I have been taken off T4 for tests for RT3 as doc thinks I have a problem with RT3 blocking the cells due to 'a very high TSH, despite a high T3' on a previous result. I have been struggling along on NDT 1/2 grain plus 6.25 T3 split dose. Most types of NDT and Levo I cannot tolerate. So the thyroid specialist took me off everything and put me on compounded T3 slow release at a dose of 1.25mcg (yes, one point two five mcg) twice a day. This seemed like a very low dose ?
I have the results from RT3 tests :
TSH 13.7 (0.27-4.2)
FT3 3.78 (3.1-6.8)
FT4 8.1 (12-22)
RT3 6.5ng/dl (10-24)
Ratio 37.86 (Range >15, Borderline 12-15, Low <12)
Other tests included
Ferritin 202 ug/L (13-150)
Folate 4.84 (range >3.69)
B12 active >150 pmo/L (range >37.5)
Vit D 121nmol (range 50 - 175)
My adrenals were tested in July and all saliva samples were within range.
Can anyone comment please on my RT3 results ? I was not able to survive on the tiny dose of T3, which I have raised to 18.5 Cynomel, but am feeling dreadfully unwell, hypo and low. Do I have a RT3 problem ?
Any tips on how best to cope with hypo symptoms while raising T3 ? How quickly can I raise ? Am awaiting info from specialist but in the meantime...
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Daffers123
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You’re probably someone who can’t tolerate any amount of levothyroxine (just taking a punt, having read through your previous posts). There are a number of people like you posting here.
Your latest results simply point to you needing more T3. The RT3 is low because, well, you’re not producing enough T4 to have it metabolise into T3 and RT3. So I don’t see how you could have an RT3 problem, at least, not any more (if indeed you ever did...).
Your folate’s rather low too? It would be worth trying to get that up a bit.
Oh, and re your other question about how quickly can you raise your dose of T3...
A full replacement dose of T3 (if you aren’t going to take any T4) is probably (eventually) going to be in the region of 30-60mcg of cynomel a day (possibly a little less, possibly a little more).
But you’ll run into problems for sure if you try to raise your dosage too quickly.
How long have you been on 18.5mcg cynomel? How quickly were you able to raise it from that titchy dose to 18.5mcg?
Today! I have been on NDT and 6.25 T3 for several months , trying to raise dose. Yes I think cant tolerate Levo/NDT/t4 so am keen to get T3 right. But I feel so awful being so under medicated.
I have been taken off T4 for tests for RT3 as doc thinks I have a problem with RT3 blocking the cells due to 'a very high TSH
I think your doctor is just barking! lol If you stop the T4, rT3 will almost instantly disappear and there's no point testing. You cannot have rT3 without T4 because it comes from conversion of T4. And, as rT3 only stays for about 2 hours before being converted into T2, there won't be much left to test.
What's more, rT3 does not 'block cells' - I take it he means T3 receptors. rT3 has its own receptors, we now know.
And, even if it did block receptors, that would not result in a 'very high TSH'. That's totally illogical because if rT3 blocked receptors, the T3 that couldn't get into the cells would build up in the blood, and the TSH would reduce.
RT3 6.5ng/dl (10-24)
That is not high rT3. That is low rT3. Your TSH is high because your FT4 and FT3 are both very low. You are grossly under-medicated.
No, you don't have an rT3 problem. And, in any case, rT3 is not a problem because it is inert. It doesn't do anything. But, you do have a problem with your low FT3. You can raise by 5/6.25 mcg every two weeks.
How are you getting on with the SR T3? This is my first trial of SR . Have used ordinary up till now. But SR /hypoallergenic x 90 tabs only 1.25mcg cost me £150 (uk). Think I've been ripped off!
I’m doing well on the SR my doctor prescribed. I couldn’t take T4 (palpitations) and T3 seemed to be running out in the evenings. I’m taking 25 mcg compounded once a day and just had blood work. I probably need more, but will see. Very expensive there! I just paid $85 for 120 capsules of 25mcg of SR T3. Do you have pharmacy options to shop?
That's a good price. We are stuck in the Dark Ages here. I will try some other pharmacies. T3 runs out for me in evenings and T4 just builds up in my system. Did you start on 25mcg straight away ?
Chest pains are not great, especially with fear of Covid
Hi: You are so right! Have you done a saliva test to check your adrenals? The thyroid and the adrenals are so interrelated. We can order the saliva test ourselves here. Mine were struggling, and that made taking thyroid meds more difficult. Lots of palpitations, no sleep, weight gain. Ugh! I stated the t3 by taking 5 mcg/day for two weeks. Then added 5 more mgc for two weeks. Then added 5 mcg in the afternoon for two weeks and then 5 more. So it took awhile to get up to the 20 mcg total, but that was the only way I could tolerate. My adrenals were LLHH, so I took some supplements for the highs that helped the low. All an imperfect balancing act. Moved over to the SR when it seemed I was running out at night. I was doing 20mcg SR twice a day, but I think the afternoon was disturbing my sleep. So I’m taking 25mcg once a day and will adjust with bloodwork.
Hope you are able to find a more affordable option. You might want, if you haven’t, look at the Stop the Thyroid Madness Website—useful info about labs as well as patient experiences. The struggle is real in getting effective treatment. Keep looking for options! We deserve to feel healthy.
I had adrenal saliva done and for first time ever, all 4 were spot on. Yes will def look at STTM and have dipped into Paul Robinsons book. Another friend on T3 only (not SR) recommended taking it at 4.30am as optimal time for adrenals!
I am taking 12.5mcg first thing and another 6.25 lunchtime. In 10 days if all goes well will increase another 6.25. Once I find correct dose will be easier to decide on SR.
I have found I need some T4 too, added 25mcg back in too and feeling much better.
Hope youre lasting out better. I'm sitting here knowing that mine is now got too low....its a horrible weariness
One other thing, I am getting a lot of stomach acid symptoms? Do you?
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