Back on T4/T3 combo after T3 only: I didn't like... - Thyroid UK

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Back on T4/T3 combo after T3 only

jrbarnes profile image
12 Replies

I didn't like T3 only after all my T4 was depleted and missed some of the benefits that taking T4 offers, however taking T4 only is not an option as I have too many symptoms of low T3 and I've tried to alternate 88mcg with a few days on 100mcgs but it resulted in terrible leg pain and a burning pain in my lower back sides. I was taking 3/4 of a 5mcg tablet of T3, as well. On T4 only my vision suffers and my voice is always hoarse among other symptoms.

I've been back on 88mcg for several weeks and increased T3 up to 12.5mcg. On a small amount of T3 I was experiencing hives, acne, and itching but once I increased to 12.5mcg it stopped. On the fourth day of a small T3 increase I started to get this nagging dull pain in my uterus area below the belly button and felt ragey. Today, I took 75mcg of Levo with my T3 and the pain is gone and I don't feel so angry but very lethargic.

88mcg puts my T4 levels around 80% and 75mcg puts it around 39% so I'm going to try 4 days on 88mcg and 3 days on 75mcg. Previously when I tried 2 grains of NDT (76mcgT4/18mcgT3) my T4 levels were 39% and T3 was 63% so most likely need more T3 than just 12.5mcg. If I stayed on 88mcg of T4 only it puts my T3 at about 0-10% on the reference range. On 88mcg T4 and 12.5mcg of T3 my blood pressure is 105/79 and heart rate is 79, which is much better. I hope to lower my T4 a little and increase my T3. The saga to find the right combo continues but this time I'm feeling a little more patient. Any observations, rants or experiences are welcome. Thanks again.

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jrbarnes
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12 Replies

I won´t be of much help, except to say that I need T4 as well...even if you need T3. I could never survive on T3 alone, even though I know many patients do...I am currently in the process of working out how much I need of each hormone, awaiting lab results on estrogen, progesterone and other labs as well. I have come to believe that finding the right ratio between T3 and T4 might be the most challenging task of thyroid patients failing to get well on levothyroxine...as most doctors only care about the TSH and, to a lesser degree, about the FT4...but many will never ask for an FT3 test nor know how to interpret it if they ever did...!However, I am amazed at the ignorance of doctors. I just found a video online of somone who recovered on NDT...yet, her doctor said that, as she was not on "human hormone", but rather "porcine hormone", she would have to be monitored more closely than someone on "human hormones" (supposedly "levo" or "levo + lio")....the ignorance of doctors never ceases to amaze me...!

jrbarnes profile image
jrbarnes in reply to

That's okay. It's helpful to read about other people's challenges with T4/T3 combos. I thought T3 only was more tolerable than being on Levo alone, that is until all that T4 depleted out of my system and then I was singing a different tune. I fully appreciate both T4 and T3 now. I like the stability that T4 offers but with the slowing conversion after I increase the Levo it was clear that T3 was needed. Finding the right ratio is complicated. I haven't met one person that's on Levo and tells me they feel energetic and normal, including my ex boyfriend.

Batty1 profile image
Batty1 in reply to jrbarnes

What did you experience when your T4 was depleted?

Redlester profile image
Redlester in reply to Batty1

yes, I'm interested to know that too as I am likely in a similar boat - had below range T4 levels and then went on T3 only treatment and wonder if I have had similar experience.

jrbarnes profile image
jrbarnes in reply to Batty1

I felt a loss of energy and my blood sugars went haywire.

Batty1 profile image
Batty1 in reply to jrbarnes

Was it severe reaction?

jrbarnes profile image
jrbarnes in reply to Batty1

I didn't have body pain but I couldn't get out of bed and had no stamina. When I first went T3 only I felt like my stomach was eating itself. I'd wake up hungry in the middle of the night and I was hungry all day. I increased the T3 but didn't feel normal as the T4 depleted faster.

LynLyn profile image
LynLyn

Hi jrbarnes. I’ve read your post with great interest. I’ve been on T3 only (30mcg) for 3 years. I’ve been trying for the last 18 months to bring in some T4 as like yourself as I need the stability. I’ve not been able to add T4 to T3 successfully so i’m now on 75mcg of T4 and I’ve dropped the T3 for now. I’m planning on adding some back in at some point but I’m going to wait (struggle on!) until July when my next blood tests are due. I’ve read of another person who has had the same experience as you. They went straight onto 125mcg of T4 from 50mcg of T3. They have ended up on 75mcg of T4 and eventually 20mcg of T3. It’s such a balancing act. Thank you for posting. You’ve given me hope that things will get better and I’m not the only one!

puffyface profile image
puffyface in reply to LynLyn

Please can you tell me what you felt when on T3 only? Why do you want to bring some T4 in?

LynLyn profile image
LynLyn in reply to puffyface

I could only take 30mcg of T3; cortisol went high after this. I also had no stamina or stability in my energy levels. My hair wasn’t as thick even with good iron levels and I was having trouble sleeping. I’ve been on 75mcg of T4 for a month and so far I’m ok and all of these things have improved already. I did make sure my ferritin, folate, b12 and Vit d levels were all good before making the change (took 2 years!). I can feel T4 working now which I never have done before (I’ve been hypothyroid for 23 years). I know this level isn’t quite right but I need to settle this dose and then will look to make changes after July.

jrbarnes profile image
jrbarnes in reply to LynLyn

Hello! I had half my thyroid removed and was on a full replacement dose of Levo for 10 years so my thyroid doesn't produce any hormone. I've noticed a lot of people who seem to do well on T3 only still have some thyroid function. T3 is important but T4 and T3 both have its benefits for me. I have to have a certain amount of T4 to feel stamina, strength, control blood sugar, and get good sleep but I also need a certain amount of T3 so that I don't have body pain, vision loss, cognitive problems, and a hoarse voice. T3 is not over stimulating for me so I jump right in, however when I went back to levo I only took 3/4 of a 5mcg tablet of T3 and worked my way up. I already know the base minimum of T3 that it takes to make a difference for me. 12.5 mcg of T3 is usually when I start to see benefits. Good luck to you as well!

LynLyn profile image
LynLyn

Thank you so much for sharing your experience!

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