I've been taking levothyroxine my entire life as I was born with a thyroid glad that does not produce any naturally.
I take a very high daily dose: 225mcg, but I have always experienced neurological symptoms, including mental fatigue, issues with concentration and memory, sporadic depression, and so on, despite my levels all being normal.
As I've never had anything to compare my state of being to, I largely accepted these symptoms as a normal consequence of hypothyroidism and learned to live with them, although they do negatively affect my life.
I only recently learned about liothyronine and my doctor has referred me to a specialist as I have had such long-term symptoms.
My question is whether anyone has had any success with liothyronine and what kind of difference it made to their life? I can only imagine the difference to my life should it work to reduce or eliminate my ongoing symptoms.
Thanks,
A
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Alexs89
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Had a TT for cancer, initially on levothyroxine, blood tests suppressed TSH high ft4 and low ft3. Was falling asleep at work, whilst driving. Liothyronine enabled me to be more like the me from before surgery. Continued to work full time and have a life. So yes liothyronine was a game changer.
Lio has been superb for me - completely back to normal. BUT it's not for everyone - and specifically it is only going to help if you are a "poor converter" - ie you have free T4 high in range but free T3 much lower in range. It is not a weight-loss drug; it is not a curer of all ills
Do you have any recent blood tests to share? Have they even tested free T3 or just free T4 and TSH? Have you ever had your key nutrients tested - ferritin, folate, vit D and B12? You need these to be right before you get the most from your thyroid meds.
And do you take your levo "correctly" - ie on an empty stomach, just with water, with nothing else to eat or drink for an hour afterwards / two hours before / between 2 and 4 hours from other medication? I don't think I was ever told about this stuff until I found this forum ...
Taking levothyroxine is like balancing one ball on your nose...taking T3 as well is twice as tricky....but if you need it it’s worth the hassle of initially doing lots of tweaking of dose
First step is to get full thyroid and vitamin testing, see where your levels are now
If vitamins are low, improving these is frequently enough to significantly improve symptoms
Common to need to supplement virtually continuously to maintain optimal vitamin levels
If Ft3 remains low, look at getting Dio2 gene test. If you test positive, it can help persuade endocrinologist to prescribe T3
For full Thyroid evaluation you need TSH, FT4 and FT3.
Also important to test vitamin D, folate, ferritin and B12
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
Levothyroxine is an inactive hormone and has to convert to T3 - the Active hormone needed in all of our T3 receptor cells, heart and brain contain the most.
T3, being the active hormone, is required in all of our T3 receptor cells and many find T3 very helpful as symptoms are relieved.
Being prescribed the addition of T3 to T4 I immediately felt better. When I changed to T3 alone, that was the solution for me.
Shaw’s - I would like to communicate with you privately on the T3 only path - I’m very interested in researching this. Please advise on your willingness / the best way to make this happen.
Poor conversion is the reason why many must take T3 in whatever form - Levothyroxine (T4) must be converted To T3 if we are are going to have any kind of energy at all. Poor conversion can be caused by estrogen dominance. Conversion happens in the liver. In estrogen dominance the liver is overloaded and conversion is diminished.
Two things can help - yes some kind of relief for the liver. Remove estrogen (progesterone can help). Orange juice, butter, and coffee (not all at the same time), Vitamin E (the good kind - high quality more expensive). A clean form of collagen is very helpful. This advice has proven helpful for me - (See Hypothyroid Revolution)
And yes, T3 - whether it’s a glandular or a synthetic, until you can open the pathways that facilitate conversion, then adding it is the only way to feel better again. Here in the US it’s almost impossible to obtain a prescription for synthetic T3. So we must rely on commercial health gurus (and sort through the melee) for bovine or porcine glandular T3. It’s affordable and the good ones really work!
I’ve had to have T3 added for the last 30 years. It was only recently that I discovered one of the main factors in Hashimotos - estrogen dominance - and yes, even men can have estrogen dominance (there are all kinds of estrogens in today’s food supply - soy for one) - but women are especially vulnerable. Wish you well on your quest for T3 - you will wonder why you had to wait so long!
I would be a bit careful about telling people to go off estrogen and take progesterone only to improve T4 to T3 conversion. I know there are functional doctors in the US advocating this approach, but estrogen deficiency can be as bad as estrogen dominance. After reading several articles on estrogen dominance, I decided I had that, went off estrogen and on progesterone only...with disastrous results. I joined a menopause forum for advice and help. When I posted my labs, I was told my estradiol levels were less than 50% of what they should ideally be to treat hot flushes (even before going off estrogen, that is). It was with the help of that forum that I realized I had been all wrong and that my estradiol levels needed to be more than twice as high. I had been using 150 mg of transdermal estradiol daily and found out some women need 450 mg daily...which is what I have worked my way up to, and only now have the terrible night sweats and hot flushes stopped and I can get a whole night´s sleep. Only estrogen made that possible. That forum also taught me that some women feel bad when taking progesterone continuously rather than cyclically (which is also something I started to do after deciding I "had" to be estrogen dominant after reading a charismatic and convincing doctor´s article...). After all, the body´s progesterone levels are only high during two out of four weeks, and not everyone needs them high all the time (I went off estrogen and started taking 300 mg of bio-identical P daily which was clearly too much for me).
There are so many things than can influence T4 to T3 conversion - chronic inflammation, vitamin and mineral deficiencies, high or low cortisol - that it is risky to single out estrogen dominance. Also, estrogen dominance is more likely in younger women in their 30s, whereas menopausal women are more likely to be estrogen deficient and benefit from both estrogen and progesterone.
Estrogen dominance is not a condition you should self-diagnose and -treat.
Your message is well taken, and yet, estrogen dominance needs to be considered.
Taking progesterone does need to be cyclical, and it is not for everyone. It is working for me after everything else worked less. It was not the intention, nor did the message advise “to go off estrogen and take progesterone only”. In fact, many of the dietary restrictions advised by Hashimotos alternative Drs and Health advocates are a form of estrogen elimination, i.e., no dairy, no alcohol, no soy, etc.
The point on lowering inflammation, and the advice on vitamin deficiency is likewise well taken and spot on - these must be addressed with or without considering progesterone.
T-4 conversion / T-3 added must likewise occur, and if conversion is not happening folks need to at least know who the enemy is, and estrogen dominance is an enemy, along with inflammation and vitamin deficiency, and leaky gut, etc. Knowing that conversion problems occur in the liver was a huge eye opener for me! But finding out that estrogen can block T-3 receptors and pathways was a game changer. So, knowledge is precious and we find out what we might do to help ourselves. If estrogen dominance affects T-4 / T-3 conversion, along with obesity, type-2 diabetes, etc. then that sheds whole new light on health.
And perhaps, self-diagnosis is not the best path taken, having a caring Dr., one who will listen and not apply “paint by number” remedies is certainly best, again point well taken. I have found one in 30 years - and would have been dead long ago had I not taken on my own illness, and yes tried many things (with the help of folks found here on HealthUnlocked for example). It is dangerous to live in a time when something as new as autoimmune diseases are brand new, and what to do until mainstream medicine catches up? We help each other, and share what works.
Thank you for your shout-out, for clearly we are all amateurs, and we do not give medical advice, as is regularly highlighted here. In the meantime, their are wonderful lives to be lived. I personally, would not have understood many things about Hashimotos if it were not for HealthUnlocked and the Internet. The shame is on our broken healthcare system, (On both sides of the Atlantic) not on the fine people struggling to feel well, nor the ones who give great portions of time to share.
I understand what you mean, and I think there are two problems at stake here - useless health care systems (pretty much everywhere, leaving patients to their own devices) as well as an information overload online.
I cautioned against self-diagnosing and -treating since I´ve done it myself in the past...not only when estrogen dominance was concerned, but I also diagnosed adrenal fatigue based on what I´d read and an online form I filled in (then, a 24 h saliva test revealed high cortisol), and later rT3 dominance after reading an article about this condition, stressing how important it was to go off T4 and take T3 only. I could not find any lab testing rT3 so I filled in another form and was told I had a 97% chance of having rT3 dominance, and that excess rT3 had to be cleared from my body by eliminating T4 and taking T3 only. I felt horrible is all I can say.
It would seem estrogen dominance is a serious problem in many women on birth control pills, especially if not given progesterone as well (and not all doctors seem to prescribe P along with E).
I do believe estrogen dominance can be a real problem. I am not just sure how many doctors know enough about it to properly diagnose and treat it...especially since it´s rarely about estrogen levels being out of range, but simply too much estrogen relative to progesterone.
Some functional doctors suggest all women should be put on progesterone in their mid 30s, to avoid becoming estrogen dominant. It´s an interesting theory, but I don´t know enough about it.
I'm with Graves and had my thyroid ablated with RAI in 2005 :
I was put on a daily 100 mcgT4 - Levothyroxine and struggled on, as you do :
About 8 years later I felt even more compromised mentally, but failed to get a trial of T3 through the NHS.
I then took to self medicating and purchased some Liothyronine - T3 :
It was a game changer and I woke up with a clear, happy head and a brain switched on and it was a light bulb moment.
The brain uses a massive amount of T3 and now, when looking back at what I now think I know - I believe I've been missing T3 most of my life.
I am dyslexic and I taught myself to read in my twenties and I am now in my seventies :
I believe my mental and emotional struggles of the past were very possibly linked to low T3 thyroid hormone levels as my clarity of mind has never been as clear as it can be now :
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