Prescribed liothyrnonine today

[Jellyfish_1]

Hello everyone,

So, my endo prescribed it today. I'm nervous and hopeful that this helps me to get back on my feet. I have a check in with my endo in 3 months. Fingers crossed.

Been on levo only for 7 years. from today, I'll be taking 100 levo and 20 lio.

I'm also thinking to try the autoimmune protocol. But I'm going to do that after the med has had time to kick in. I want to be sure what has actually worked for me.

Anyone taking lio and can share your experience?

Thanks

J

[SeasideSusie Remembering]

Well done Jellyfish!

Has he reduced your Levo? Depending on what your latest results are you may need to adjust Levo when adding T3.

Also, I wouldn't start with 20mcg T3 straight away. It's pretty potent stuff (someone recently said like learning to drive in a Ferrari!). So I would start with 5mcg for a couple of weeks, then add another 5mcg, wait a couple of weeks and if all OK, add another 5mcg, etc, until you reach the 20mcg, and drop back if you get a racing pulse, palps, high blood pressure, jittery, etc.

You don't want this experiment to fail and have your T3 taken off you 'because it hasn't worked', so it's better to build up slowly to where you feel good, adjusting dose of Levo if necessary.

I've just seen this previous post of yours healthunlocked.com/thyroidu...

Are you addressing the Hashi's by being strictly gluten free and supplementing with selenium L-selenomethionine 200mcg daily?

What about the B12. Has that been looked into?

What about your ferritin level, it's dreadfully low and needs to be at least 70 for any thyroid hormone to work properly.

What's your Vit D level?

[Jellyfish_1 in reply to SeasideSusie]

Thanks so much for your detail and tailored reply seaside susie.

In answer to your helpful queries

I was on 175 levo. Endo reduced it to 100 and introduced 20 lio split into two daily doses.

I take your point about slowly does it with the lio. I've taken 10 already. I won't take the remaining 10 today and will build it up from 5 as per your suggestion. The last thing I want is to have it taken away before I see real benefits.

Been taking b 12 and ferrous fumerate tablets both prescribed by the endo. Am also takin vit d. Not seen any improvement on them so far. Been on them for around 5 weeks.

I've not taken any selenium or gone gluten free. I will surely be doing this. I wanted to see what effect t 3 would have. Otherwise I won't know if the t3 worked or going gluten free. What do you think?

In the meantime I have bought a bunch of thyroid books and an getting up to speed on the way forward. I want to try the aip protocol by Isabella wentZ. I'm vegetarian, so it's going to be tough, but I'm not going to let that get in the way.

So, I nearly didn't get the t3 today. I was first seen by a registrar who told me that there is noting more they can do for me and it's likely I have post natal depression. Luckily I recalled that my usual endo told me he had a plan to share with me at my next appointment. He had not written anything in my notes. So at my request the reg called in my endo, who proceeded with his plan of trying me on t3. Phew. Thank goodness for forums such as this which give us the confidence to keep going.

Also, I got back the result of my short synacthen test.

300 pre cortisol (should be more than 100)

661 post cortisol (should be more than 400). The reg told me it looks very good. Do you have any experience with this?

Thanks

J

[SeasideSusie Remembering in reply to Jellyfish_1]

Sorry Jellyfish, I can't help with the short synacthen test, I only know about saliva cortisol/dhea tests.

That's a big reduction in Levo in one go. I've gone over to a combination by adding T3 to Levo myself so can only go by my experience, and I did it gradually, lowering Levo by 25mcg and adding 6.25mcg T3 until I got to a dose of each that seems to suit.

Being gluten free should help reduce the antibodies and help heal the gut and most Hashi's patients find that helps, it's a separate issue to adding T3.

[Jellyfish_1 in reply to SeasideSusie]

Thanks for clarifying it's a separate issue to t3. I was confused. Oh dear. No more excuses. Time to get stuck in.

[Clutter]

Jellyfish_1,

Divide the 20mcg T3 into 2 doses and take the first with your Levothyroxine and the second at bedtime. Take T3 away from food and drink as you do Levothyroxine.

What dose Levothyroxine were you taking before T3 was added?

[Jellyfish_1 in reply to Clutter]

Hello,

Thanks for replying.

I was taking 175 levo. Reduced now to 100.

The reminder of taking t3 without food was much needed. I took it with my sandwich. Totally forgot.

X

[SlowDragon Administrator]

Personally I think you need to make sure your vitamins at a good level first, plus strictly gluten free diet.

Did you get vitamin D retested as advised in previous post?

I have just started T3 6 weeks ago under guidance of endo. My Levo was reduced by 25mcg and 10mcg added ( 1/4 tablet split dose 2x 5mcg), but for the first week I did half that - 112mcg & 2x 1/8th of tablet. Even that was quite a "whoosh".

[Jellyfish_1 in reply to SlowDragon]

Thanks.

I totally forgot about re testing vitamin d!

I'll add it to my list of to do.

My endo reduced levo by 75mcg and added 20 lio. How soon after you took your first dose of lio did you feel the whoosh. I took it an hour ago and feel nothing. But I did make the mistake of taking it with food.

Sorry if I sound ignorant. I know to take levo on empty stomach. But make a rookie mistake. To be honest I'm savvy scared the t3 won't work and my life won't go back to what it was.

[SlowDragon Administrator in reply to Jellyfish_1]

I felt "different" within half an hour. First 4-5 weeks a mix of feeling better and worse, but slowly feeling more of the "better" and less of the worse. But if I did too much and forgot to pace, then pretty grim.

Waiting blood test results now after 6 weeks at this. Gone from barely walking more than 10-15 mins before T3 to being able to do about an hour.

[Jellyfish_1 in reply to SlowDragon]

Perhaps the fact I took it with food reduced the effectiveness. I just feel so tired still. Let's see what happens with my evening dose on an emptier stomach.

I'm so glad you feel better than before. It must feel good to be able to walk further. I have to hold onto stair rails with both hands and drag myself up. Being able to walk up the stairs without any thought is a great marker.

So doing too much by way of activity still tires you out?

[BootsOn]

Jellyfish_1 My experience of a short synacthen test a few years ago was that your second result has to be more than double that of the first. Mine did, though only just. Yours looks better than mine did!

I subsequently did a saliva cortisol test and found that although I was just in range for the first test of the day, the other three were flatlined.

Does that help?

[Jellyfish_1 in reply to BootsOn]

Thanks. That was very insightful.

[Wren99]

Hi jellyfish1.

I take 100mcglevothyroxine and 10 mcg liothyronine in the morning and 5mcg liothyronine at night. I am gluten free whenever possible. I found my mood lifted pretty quickly after starting liothyronine, but the physical effects are slower, maybe 2-3months to see a slow improvement.

I used to struggle with walking up and down stairs when just treated with levothyroxine , and now have no difficulty. I felt like an old woman and the pain was really getting me down. Like you stairs were a bit of a marker for me and now I take great pleasure in trotting up and down normally!

Currently I am walking in Scotland and did 8 miles 2 days ago and other than normal tiredness have had no real aches and pains. Previously this would have been unthinkable to me because of pain and exhaustion.

The only side effect of t3 I notice is 20 mins to half an hour after taking the morning dose I can feel a bit hot and sweaty.

So lots of luck, thank goodness you have found a sympathetic endocrinologist - I think it is quite important to increase the t3 slowly as I felt a bit over treated initially as it takes some time for the effects of the higher dose of t4 to wear off. Also dividing the dose morning and night helps.

I hope you are soon scaling the stairs without pain!

[Jellyfish_1 in reply to Wren99]

Thanks so much for your detailed reply. Wow, you totally get the whole stairs thing. Sometimes I think I'm imagining it. So have taken dose 3 of the t3. So far no adverse feelings. Still very tired but don't expect that to change over night.

You have given me hope! It's amazing to hear you are walking around so freely. I'm so looking forward to those days again. So I'm due to see my endo in 3 months for an update. That's in line with how long you say it takes to feel fully physical effects. Fingers crossed.

Do you think being totally gluten free will make a bigger difference or you're feeling fine as you are?

[Wren99]

Hi jellyfish1

Before taking T3 I was coming downstairs by holding the banister and having to have both feet on each step, I would get out of bed each morning very slowly to assess what sort of pain I was in. So it has made a huge difference to me. I still cannot believe how much better I feel.

It has been a long road for me, firstly in getting diagnosed and then finding a good endocrinologist.

In answer to your question, I'm afraid I'm not sure about the gluten free thing. I do it because a lot of what I have read links symptoms to leaky gut, and I want to give myself the best chance of being well. However I was gluten free when just on T4 and it certainly didn't do the trick without the T3.

Hope this helps

[Jellyfish_1 in reply to Wren99]

Hi.

Yes that really helps. I'm the same with the stairs. Even when getting off the loo (tmi alert), I can't just shoot up, but need to position my feet in such a way so I can balance properly.

I feel a bit better today energy wise. But I'm being blocked by headaches and migraines which I've had for the past two weeks (before I took t3). Getting acupuncture today. It helped me before. So fingers crossed.

So happy to hear of your recovery. Gives me hope. Positive experiences always do!