[cujet]

Male, 58, former athlete, Hashimoto's with zero thryroid function and high antibodies including RNP antibodies.
Meds:
NP (natural dessicated thyroid) 135mg/day
Prednisone 10MG/d
Ezetimibe (cholesterol) 10mg/d
Aspirin, low dose

The problem is massive fatigue. Without Prednisone I'm non functional and can't stand up without help. The 10mg pred helps immensely, but is not a cure. I still have bouts of fatigue I can't overcome, other than sleeping it off.

I want to try T3 only. While my reverse T3 labs seem to come out OK (Note: every time they've been tested, I felt well) and my T3 levels are in the mid range, I've run out of things to try. I keep reading about people who use T3 multiple times per day and "titrate" up to a dose that works for them. And it relieves/cures their Chronic Fatigue.

Quite simply, I'm tired of being tired and having to sit down all the time. As a former athlete and gym guy, I would like to be able to do at least some exercise.

What do you guys think?

 

[Sabrina]

Hi! Sorry for what you’re dealing with. im not a doctor but I do take levothyroxine and liothyronine. I just went through, and am still dealing with, hell after changing my levothyroxine dose to increase my free T4. I was low on free T4 but good on free t3. while I was able to live my life, run half marathons and feel great, the low T4 made me feel really vulnerable.

So yes, you can focus on T3 treatment, but it may not be necessary to become optimal. I don’t know how the antibodies play into it, I don’t have a thyroid so this is what I would suggest to someone based on my own experience.

Get free T4 and free T3 labs. The last NDT or T3 dose should happen 12-15 hours before your labs. Liothyronine has a half life of 2.5 days and can linger in your system up to 12.5 days. When I am properly medicated, I have a decent morning number at about 50-60% range even though I haven’t taken any for 12-15 hours. Everyone is different, but that’s what works for me.

Right now I’m building up my liothyronine slowly again because I don’t know what it’s going to look like at this new T4 level, and I have to sit down and rest a lot, feel dizzy, weak, etc because it’s a process I need to take slowly and I’m not there yet. I do know some people on NDT also need to have liothyronine meds too. Do you have labs you can share?

 

[cujet]

Hi Sabrina! Thank you for the detailed reply, and of course, sorry for my late response, I've been busy at work, and sleeping when not working.

I've been able to keep my labs in the normal range. Over the last quarter century, I have needed to maintain FAA (I'm a pilot) medical certification. So I've been kind of "lab centric" with minor adjustments up or down to achieve T4, T3 and TSH in the normal ranges. Note the FAA is tolerant of my TSH being as low as the 0.02 range, as this is something they like to see for their thyroid cancer pilots, I guess to suppress recurrence.

In any case, my T4 and T3 along with Rt3 are where they should be and have been for 25 years now. NOTE: I've tried adding T4 to the NDT with good lab results but poor actual results, as NDT is a bit high in T3.

I've started experimenting with dosing the Natural Dessicated Thyroid with 3, then 4 doses per 24 hour period. It's been quite enlightening. Same 157mg/day, just in 3 or 4 steps.

I crash just like before, but now I slowly recover after taking a half of a 90mg pill. Where as before recovery might be days. I think I was riding on the T3 and unable to utilize the T4. I cannot function on T4 alone.

I found this writeup. It's informative and worthy of study. The Swinging Pendulum in Treatment for Hypothyroidism: From (and Toward?) Combination Therapy

 

[cujet]

UPDATE: Just saw the Endo today and I'm going to start on T3 only. I don't know it it will help solve my problems, as the Endo noticed a number of pituitary hormones were very low, and scheduled another MRI with higher pituitary resolution. The Endo also suspects I have a form of miositis (autoimmune muscle inflammation that causes weakness, fatigue and skin problems) This may explain why I need prednisone so badly.

I am hopeful that managing T3 will give a way to manage energy levels.

 

[cujet]

Early update:

It's two weeks since I've started the T3 only protocol. No question its helped some things. In particular, "so far" I don't have to eat all the time to avoid low blood sugar. I have horrible problems with weight gain, fatigue and reactive hypoglycemia (that started the instant my thyroid failed 25+ years ago) . Between meals, I'd get so tired and hungry. The T3 makes it more the way I used to be. I simply feel normal when I don't eat, I still get very tired, but it seems the low BG between meals situation is far better.

Also my muscles would simply stop working with the most modest of exercise. A walk or bicycle ride would cause my legs to fail and quit working, swimming would cause my arms to fail, gym weights would cause the muscle being worked to rapidly tire and fail to work, all without ever raising my heart rate. That problem might be just a little better so far.

But most of all, I simply feel different in a good way and for that, I'm very thankful. I'm hopeful I can return to a normal life.

Dose is 12mcg, every 4 hours. Seems like the dose is on the low side, as it is a bit of a roller coaster ride.

 

[cujet]

Update. I'm taking T3 6x/day. It allows some adjustment if I crash. Clearly, I've been needing to dose T3 multiple times per day all along. Some days it feels like too much, and some (like today) I clearly needed more. It's generic, I wonder if the pills are inconsistent.

I also got off of Prednisone (for a few months), 2 changes at once, substituting Hydrocortisone at 4x the pred dose. I went downhill badly, with autoimmune attacks. My left eye acted up almost right away. Fingers and toes started going white and I got so weak I could not get up from a chair.

So I am back on Pred, and symptoms resolving.

Edit: Doing OK, I'd say 50% better than the previous treatment.

 

[cujet]

April update:

I can now exercise and bicycle! Here is what's working:
I take 6mg T3 and 5mg Pred just before exercise. (the extra T3/Pred just before a workout is the key to making it work)
I use Testosterone creme just before exercise. (I have very low T)(not sure if it helps directly, but I'm doing it)
I use Amino Energy (amino's) and Perpetuem (lactic acid buffer + non sugar carbs) this helps sustain energy levels so I don't run out so quickly.

So far, I've hit upon a combo that is working. I can't believe it. I feel worlds better, and not only am I able to stand, climb stairs, I can actually do some work. I so hope to get myself fully functional again. As a former athlete and very capable guy, this was horrible beyond words and I sure hope to have ever improving results.

 

[cujet]

June update: Flat out wonderful. I'm nearly a fully functioning human again.

 

[Infiniti]

Hi Friend, we are the same age, I have same exact problem you were experiencing, congrats on discovering a solution, getting back to feeling wonderful. I'm given 5mg Prednisone 3 days, all the time due to inflammation, I'll feel fabulous. Rest of time, tired due to multiple health disorders that all began after Thyroidectomy. Liothyronine T3, is inconsistent. Difficult for me to balance thyroid medications. Thanks for sharing, your progress.

 

[cujet]

Hi Friend, we are the same age, I have same exact problem you were experiencing, congrats on discovering a solution, getting back to feeling wonderful. I'm given 5mg Prednisone 3 days, all the time due to inflammation, I'll feel fabulous. Rest of time, tired due to multiple health disorders that all began after Thyroidectomy. Liothyronine T3, is inconsistent. Difficult for me to balance thyroid medications. Thanks for sharing, your progress.

The T3 is slightly inconsistent and occasionally a roller coaster ride if taken once or twice per day. That's why I take it 6 times per day, as the levels are much more consistent that way. AND adjust my dose depending on how I feel. The hour or so of "hyper" symptoms subside if I take too much (which I have to do when I exercise otherwise I have exercise intolerance) and the 30 mins of fatigue if I forget a dose, are manageable by simply taking a touch more T3 and Pred. It all depends on how I feel.

One thing is clear, I need a touch more of T3 and Pred for a workout. I'll be hot afterwards (it is Florida after all) but so what? I feel human again, I've lost plenty of weight and If I did not say it before, I feel human again.

I'm not cured, far from it. But I do have my life back and I have figured out that I can manage it myself. That's GLORIOUS compared to being a zombie.