hypo; stopped levo, kept T3; advice?

[Britomartis29]

Dear Wise Community,

First, thanks for all your good posts and help here. I'm new here but have been lurking a bit. Long story first, then the question:

I was Dx hyper in 2002; methimazole for 6 months solved it. No problems til 2012 (or, no diagnosed problems), when I went badly hypo and was put on 100mcg levothyroxine. That put TSH in range quickly, but you won't be surprised to hear I still felt horrible. Finally in 2013 found a good doc 3 hours away (I'm in the in US, so that is a "normal" distance to drive for a doctor, hah) who added T3 20mcg/day, and very quickly I felt better, but with TSH very low, in the 0.02 -0.05 range. GP became alarmed, though I had no hyper or heart issues and felt fine, and wanted me to stop the T3. I didn't go back to the GP. In Jan 2016, still on these doses, sudden, unexplained weight gain of almost 20 pounds, in just a few weeks. I have tried everything, I mean everything, and nothing worked. Felt awful: dry eyes, the beginnings of mucin, fatigue, constipation, cold, brain fog, everything hypo. Couldn't get in to see any doctor.

I had read about Levothyroxine suddenly not working any more. In desperation I weaned myself off the levo, and now after two weeks of T3 only, I am shedding pounds like crazy, my dry eyes are better, dry skin better, nails just starting to be better, less fatigue, better mood, can concentrate more than 5 seconds, less constipation. At the same time, I started a multivitamin, added D3, magnesium, vit C and zinc, and kept up with the low carb-no dairy-low gluten I had started back in january to no avail then (working now?).

My body is telling me I did the right thing, but I never like to change something this important without the doctor's advice. I am in the UK right now but can get in to see the good doc in February when back in US. This morning I did a Blue Horizons finger prick blood test (the thyroid 11) and should have results in a while.

Can you tell me of your experiences with this kind of thing? Anything I should be watching for? Thank you in advance.

[shaws Administrator]

Welcome to our forum. As you have weaned yourself off levo and continued with T3 only, did you increase your dose of T3 to the equivalent of the levo you were taking?

[Britomartis29 in reply to shaws]

Thank you, shaws; glad to be here. No, I was on 100mcg levo plus 20mcg T3; kept the 20mcg T3 with only this difference, that now, instead of taking all in morning, I take 10mcg very early before arising, then the other 10mcg in the afternoon, usually but not always mid-afternoon. This ok? I'm worried if I take more T3, I'll run out of pills, and no way to get more until doc visit in Feb.

[Britomartis29 in reply to Britomartis29]

Also: is it true one mustn't take T3 with coffee? I tried never to take the levo anywhere near coffee.

[shaws Administrator in reply to Britomartis29]

Coffee in general, I believe, interferes with the uptake of thyroid hormones. So I'd leave a big gap between both. Food also interferes with the uptake so that's why it is advised on an empty stomach.

[shaws Administrator in reply to Britomartis29]

20mcg of T3 is roughly equivalent to 60mcg of levo. So by dropping 100 levo and it takes about six weeks to eventually leave your system, I'd advise a.s.a.p.. to get extra T3's. The equivalent daily dose of 60mcg levo might cause symptoms.

I take my 1 3/4s T3 once daily and am well. Each tablet is 25mcg

This link is by a doctor who prescribed T3 as well as NDT and it might be helpful:-

web.archive.org/web/2010103...

[Britomartis29]

Thank you, shaws, very helpful info. I've got enough T3 to last 36 days at this dosage, but obviously less if I raise it, so will have to have more soon. Might start raising gradually, 5mcg every couple of days I guess would be gradual enough. The amazing part is how much better I feel on even this small amount of T3 only. No idea how this can be possible.

Will post this morning's blood tests (Thyroid-11 testing at Bluehorizon) as soon as they come in; maybe the forumites will be able to explain it.

Has any one else had the experience of dropping T4 out of the mix?

[Britomartis29]

Hello again: got the lab results, which show very high TSH (for me), low-end of normal FT3, but both T4 and FT4 too low. (Full labs below.) The doctor who sent the Blue Horizon lab left a nice comment, saying to make an appt with doctor (as I said, I'll see someone in Feb) and to add T4.

I can see why this makes sense, but because I was feeling so bad on the 100mcg T4, why would I want to go back? Have been feeling a lot better without it. I will raise the T3 dose to try to put in enough to convert so as to equal the old doses, but is it really a good idea to add back T4?

Here are labs:

NORMAL RANGES:

CRP 1.40 <5.0

Ferritin 77.8 20-150

TSH 3.10 0.27-4.20

(this TSH is very high for me: usually 1.0 or less when feeling well)

T4 Total L 28.5 64.5-142.0

Free T4 L 4.62 12-22

Free T3 3.71 3.1-6.8

\

Anti-Thyroidperoxidase abs 8.8 <34

Anti-Thyroglobulin Abs 15.7 <115

Vitamins

Vitamin D (25 OH) 134 (very high for me) 50-175

Vitamin B12 498 250-725

Serum Folate >45.4 8.83-60.8

Any ideas for me? Have you had a similar experience, and if so, did taking more T4 help?

Thanks!