T3 Only Users Advice: Hello, I have posted a... - Thyroid UK

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T3 Only Users Advice

Alexa422 profile image
26 Replies

Hello,

I have posted a few times here and have always received great advice. I am struggling a lot with my treatment. I switched to T3 only but reacted poorly to the fillers in Cytomel (combined with being under medicated). I had to switch back to NDT, which I also do not feel well on, more weight gain, foggy thinking, etc. I want to try T3 only again but need a little more guidance on how to go about it. My doctor is ordering me compounded T3 with coconut oil and chicory root as the only filler (pure, NOT sustained release). I am on 3 grains of WP Thyroid currently. When I tried cytomel I started at 25mcg from 3 grains of WP and felt absolutely awful! What is a good starting point with T3 only? How quickly can I work up?

I have low cortisol and my T3 and T4 are low even on 3 gains of WP, with a suppressed TSH. My doctor will not raise WP as he does not want to supress TSH further, he is willing to add T3 or go T3 only.

Would love any advice!

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Alexa422 profile image
Alexa422
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26 Replies
greygoose profile image
greygoose

But adding T3 will suppress your TSH just the same as NDT. It's the T3 in NDT that suppresses the TSH. 3 grains of WP contains 27 mcg T3, doesn't it? So, I shouldn't think you want to start any lower than 25 mcg, because that would be lowering your dose. But, it really does depend on your labs. It would be a good idea to post them here, with the ranges, so that people can better advise you.

Oh, and TSH is irrelevant when you are taking T3, it doesn't matter how low it goes. The only important number is the FT3. :)

Alexa422 profile image
Alexa422 in reply to greygoose

This is on 3 grains NDT:

TSH: .01 (.27-4.2O)

T4: 5.8 (4.5-11.7)

Free T4: 1.19 (.93-1.70)

T3: 81 (80-200)

T3 Free 2.3 (2.0-4.4)

RT3 15 (8-24)

Iron 94 (37-145)

Ferritin 64 (13-150)

I understand how TSH does not matter, I wish my doctor would as well. I just do not know what to do, and he does not know either. Am I supposed to continue life like this? Barely functioning and suffering each day. Right now my stomach is soooooo big and inflamed and all I ate was some steamed veggies and an avocado. I do not understand what is happening to me. I need some kind of plan to stick with and each time I try I do not feel well.

Yes, WP has 27mcg of T3 in 3 grains, I take them all at once around 4 am. Yet wake up feeling like I got hit by a bus.

shaws profile image
shawsAdministrator in reply to Alexa422

Are your blood tests taken at the earliest a.m., fasting (you can drink water) and allow 24 hour gap between your last dose of hormones and the test and take afterwards?

Alexa422 profile image
Alexa422 in reply to shaws

yes, always in the AM, no food, no thyroid meds at all for 24 hours.

shaws profile image
shawsAdministrator in reply to Alexa422

Your results are too low. You definitely need more hormones (disregarding TSH :) ) I cannot say about the last three results

Alexa422 profile image
Alexa422 in reply to shaws

How do I determine weather to raise NDT, add T3 to NDT, or go all T3 and work to a higher dose? I am so confused and sick and I hate this.

shaws profile image
shawsAdministrator in reply to Alexa422

If you are going to switch to T3, I'd start at 25mcg. I'd take your pulse and temp before you begin and take it a couple of times for a few days. It can be a guide, i.e. if you feel hot - you may find your temp hasn't risen as you thought. If it is too high drop dose slightly. If pulse is too fast that would point also to maybe too much and reduce slightly or to previous doe.

I'd then add 1/4 tablet every week until you feel well with no clinical symtpoms always using temp/pulse as a guide.

You are fed up with the struggle of trying to get well. You are tired and head spinning trying to figure it all out when we cannot rely on doctors as very few are educated about the workings of the thyroid gland and how important it is to enable our metabolism to work efficiently and normally.

Good Luck.

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

web.archive.org/web/2010112...

Alexa422 profile image
Alexa422 in reply to shaws

Thank you, just a couple follow ups.

* what are good vitals vs bad? what should my heart rate, BP, and Temp look like? and what numbers are too high?

* Also when you say raise 1/4 tablet how much is that? I have 5mcg pills.

greygoose profile image
greygoose in reply to Alexa422

OK, so you're not absorbing it very well, you would appear to have digestion problems. So, you possibly wouldn't be any better off on T3 only, until you get that fixed.

Have you been tested for Coeliac? Do you have Hashi's?

You could either have leaky gut, or low acid. It's easier to start on low acid. Have a read of this, and try the home test at the end of the article :

scdlifestyle.com/2012/03/3-...

Are you a vegetarian or a vegan? Your ferritin is a bit low. Should be at least mid-range for your body to be able to process NDT. Have you had your B12, folate and vit d tested? Because they could all be low, too, and need to be optimal.

Alexa422 profile image
Alexa422 in reply to greygoose

I have horrible digestion actually. My stomach seems to not be able to digest any food ever, and I get even more tired after I eat. I also get crazy cravings for calorie dense foods like almond butter, coconut, and nuts/seeds and I tend to end up binging on them as I never get a signal that I am full. I tend to flirt with the line of veganism though I have no aversion to eating meat. I just for some reason tend not to eat much meat at all. I have been very strict vegan in the past for losing weight, which worked very well for a while.

I NEVER eat gluten or dairy of any kind so that should not be an issue I have. I do have low stomach acid and take digestive enzymes with HCL and apple cider vinegar with meals.

I have had B12 and vit D tested and my doctor has put me on a supplements for both.

greygoose profile image
greygoose in reply to Alexa422

You probably don't eat much meat because you know instinctively that you will have a hard time digesting it. That happens to a lot of hypos.

But, how about bone broth? That is supposed to be excellent for repairing the gut, and doesn't take much digesting.

How much vit d had the doctor given you? The odds are it's not enough. And, what has he given you for B12?

Alexa422 profile image
Alexa422 in reply to greygoose

i have a fridge and freezer stocked with home made bone broth right now! I drink a cup every night. I take quit a bit of b12 but am gong to ask my doctor for shots instead as I do no think I absorb it. I take liquid vitamin D plus k2 and I take a full dropper full.

greygoose profile image
greygoose in reply to Alexa422

OK. How about magnesium? Do you take that? To avoid absorption problems, you could try Epsom salts in your bath.

Alexa422 profile image
Alexa422 in reply to greygoose

Ahh yes I take a powdered version of magnesium at night, its around 400mg, I probably would not go to the bathroom if not for that!

greygoose profile image
greygoose in reply to Alexa422

Yes, I know what you mean!

Well, it seems you're doing all you can yourself to help your gut. But, you might have a word with your doctor on that subject, see if he can come up with anything else. Because that seems to be the root of the problem.

shaws profile image
shawsAdministrator

3 grains of WP thyroid is around 300mcg of levothyroxine.

25mcg of T3 is around 100mcg of levo. If you start on 25mcg of T3, takig pulse/temp before you begin you can add 1/4 T3 every week until you feel well. I will give you a link which may be helpful:

web.archive.org/web/2010112...

Alexa422 profile image
Alexa422 in reply to shaws

I have been on 25mcg of Cytomel not long ago and felt HORRIBLE. I believe I reacted poorly to the fillers and my doctor is now going to have my T3 compounded with coconut oil as filler. I also suspect I needed to raise the dose soon. Would I be reacting poorly to dropping the T4? I was also taking it multi dosed and was thinking with my horrid digestion I should maybe take it all in one dose in the AM?

shaws profile image
shawsAdministrator in reply to Alexa422

Dropping the T4, I don't think so and that's because t4 made me very unwell. I have tried all NDTs and T4/T3 but I am now well on T3 only. I don't know much about compounded T3 but that may be preferential if it doesn't aggravate you.

According to Dr John Lowe who took 150mcg of T3 daily himself would not agree to splitting doses of any thyroid hormones we take. It was one daily dose (his in the middle of the night - myself when I get up a.m.) Lots of misinformation arises around T3, maybe because they only want to prescribe levo only as I understand many doctors got paid (USA) if they prescribe levo in preference to other thyroid hormones.

Dr Lowe was also an Adviser to Thyroiduk.org.uk but died of an accident and he is greatly missed. His website is archived so some links within may ot work.

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

There are other topics at the top of the page which might be helpful too.

Pamanda profile image
Pamanda

Your low cortisol may also be impacting how you feel. In addition to some of the excellent links supplied by members here, the book 'Recovering with T3' by Paul Robinson is also a fantastic resource for anyone using T3 only.

Alexa422 profile image
Alexa422 in reply to Pamanda

I have read the book many times, which is why I would love to try the treatment. I attempted once before but reacted very poorly to the cytomel. I am going to try again with compounded T3 so that I do not have any crazy fillers in it. I just am having a hard time transitioning to the T3.

Pamanda profile image
Pamanda in reply to Alexa422

Have just gone through your previous posts - sorry for mentioning Paul Robinson's book when you had already talked about it. One thing he does stress though, is the need to have everything else optimised, which you've been doing with the B vits, Vit D etc, and how about your selenium and iodine (I ask because you're not autoimmune)?

You mention that you are not taking any adrenal support even though your cortisol levels are low throughout the day. Is there a particular reason you're not on anything? Hope that doesn't sound too pushy??

The other thing to consider is environmental toxins because depending on the offending toxin, this can play havoc with how everything else works. These would need to be tested for.

As others have stated, cutting down on the HIIT may help your body to use its resources more effectively. I know it's hard to not exercise, especially when weight starts going up, but you'll be doing your body a favour by leaving off the cardio until you're optimised.

Have you been able to increase your protein intake?

Alexa422 profile image
Alexa422 in reply to Pamanda

No worries, its hard to keep up with all the information.

I have never had a doctor tell me to do any adrenal support except for taking NDT or T3 a few hours before waking as Paul advises for the CT3M.

I have been told that I have way too much bromide in my system and we tried to flush it with Iodine but I reacted very poorly to the iodine. Everything is just a mess and my health is declining each day. I do not even know what to do at this point.

tinygigi profile image
tinygigi

Have you had your reverse T3 tested? I have read that if your T4 is not properly converting to T3, then the excess T4 will go to Reverse T3 (storage). This can happen supposedly if your cells are not able to receive the T3. I have read that you lower your NDT to 1.5 graines and add the T3 (5mcg) at a time every 2 weeks. I am not a doctor, nor have I ever taken T3. I have only taken NDT but I have read a lot along the way.

Alexa422 profile image
Alexa422 in reply to tinygigi

I have had reverse T3 tested. It has been as high as 15 and when I lower NDT a bit it goes to around 8 Reference range is 8 - 24. How do you do on NDT? Any rough times in your road to recovery?

tinygigi profile image
tinygigi

I started at 1/4 grain back in early November. At first I was doing ok but then after a couple of weeks I started having bad anxiety, panic attacks, depression, etc. Turns out I had low iron and ferritin and that was causing the issues. I started supplementing iron and that helped. Since then I have gradually added 1/2 grain every 2 weeks. I am now up to 3 grains daily. I am still not feeling optimal. I have improved some though. I get labs again in a couple of weeks so we will see at that time if I should continue to increase the dose or stay steady. I would like to try adding some T3 but will wait to see my lab results.

I am still having a rough time on my road to recovery! This thyroid thing is no joke. :(

Do you have results on your iron, ferritin, Vitamin D3, B12, selenium? Also do you take Vitamin C? These are important supplements that go with treating the thyroid.

Alexa422 profile image
Alexa422 in reply to tinygigi

yes it is all so hard and killing me ! I am so stressed out like all the time! I have them all tested and supplement all of them! I can not really tell a difference but I also have really bad digestion so I really do not think I absorb anything.

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