Also, is there anyone out there who has a T3-alone therapy experience?
I´m of late having strange Levothyroxine toxicity symptoms even with a dose as low as 12.5 mcg (whereas the prescribed dose from my thyroidologist is 50!) and sometimes these symptoms last for as long as the third day after taking the medicines.
It must be of interest here as to what my (toxicity) symptoms are, well, just read the leaflet of Levothyroxine brands! Anyway, they´re: tremors, insomnia, anxiety, heart palpitations, confusion, fatigue, difficulty in thinking and concentration, mental fog, excessive urination, hot flashes, restlessless and a strange tingling sensation in my right foot in lying position, extreme bloating (and on days constipation). Different, almost all, brands of Levothyroxine have been tried.
Secondly, the foods that interact with it (such as caffeine and fibre) that´re advised to be eaten four hours after it, if I drink black tea, cocoa powder or fibre-rich whole grain bread even if 11 hours after it, I feel a strange headache and a feeling of having received a blow in my head! I´m no doctor or pharmacist, but as a patient my feeling is as if the medicine doesn´t get digested or absorbed at all in my body for hours and hours after it.
I´m at a loss to explain these incredibly strange experiences to my thyroidologist, but I´ve done it and she does believe me, but can´t seem to find a solution.
I was wondering whether a T3-alone therapy should be tried in my case? Any suggestions?
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Joshua2016
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Some of the symptoms are likely to be due to under medication as you are only taking a fraction of the dose prescribed. T3 only is an option if your GP will prescribe it or you are prepared to buy online and self medicate. A better option may be to try T3 + T4. I can't tolerate Levothyroxine on its own but taking T3 with it calms the adverse effects. I find T3+T4 combined a smoother ride than T3 only.
You don't need to leave 4 hours between taking Levothyroxine and food and drink. For maximum absorption Levothyroxine should be taken with water 1 hour before, or 2 hours after, food and drink, 2 hours away from other medication and supplements, and 4 hours away from calcium, iron, vitamin D supplements and oestrogen.
Hypothyroid patients do seem to develop food intolerances but they often resolve once you are optimally medicated.
That´s exactly what my thyroidologist thought and hence put me on different doses of it, 25 mcg, 37.5, 50, 62.5, 75 and what not! However, increasing the dose would worsen the symptoms so much as to myself having a couple of panic attacks! A brand that contained both T4 and T3 has been tried, but no success with that either (in short, exactly the same symptoms). As a sidenote, T3 medicines aren´t prescription-free over here in Germany.
Nah, I don´t stay hungry for four hours after taking Levothyroxine! I meant, I keep way more than four hours difference between the caffeinated and fibre-rich foods that are known to interact with its absorption, but still experience strange interaction symptoms.
One extremely weird side-effect that I experience on Levo´s higher dose is that I feel an organ-type thing in (the right and middle side of) my chest punching from within again my chest-wall. It´s a very fainting feeling man!
Looking it up online suggests me that that´s where the liver is, and toxicities are ultimately connected to the liver if I´m right. I wonder whether it´s my liver that isn´t friends with T4?
Hi Joshua. I had a similar experience to yours, probably more mild however. And it took a number of months for it to get better. I just started a t4/t3 brand (Prothyrid, I'm also in Germany) and it seems to be working well. 100/10 T4/T3. Is this the same brand that didn't work for you? Or were you on a 5/1 ratio brand?
I was on Novothyral, 50 mcg of it, then reduced to even 25 to see if I could tolerate it, but to no avail. Its ratio is 1:5, going by the website below.....
I'm not sure how easy it is, I went through a number of "specialists" and another endocrinologist before I found one who was even willing to talk about t3 and ndt (that's just my experience). But I know my Endo in Berlin has a number of patients on NDT, he prescribes Armour I think, but he prefers it as a last alternative.
The endo I saw before him (same office) looked at me funny when I brought up NDT almost as if she'd never heard of it, she also laughed at me and guaranteed me that I would do badly on t3 when I brought that up. She made me feel like I'm an idiot for even thinking about it. She reluctantly gave me a prescription for T3 because as she said "I came into the meeting knowing what I wanted and wasn't going to listen to her" and she had to even consult another doctor to make sure she wasn't making any mistakes on the script.
I went home uneasy and stayed on my T4 until I saw the Endo I'm with now, who luckily is the exact opposite of her.
So I saw my GP today just moments ago. She said she doesn´t even know a thing called "T3", or any other form of thyroid medicine apart from Levothyroxine. She advises me to see my thyroidologist again, and I´m unwilling to do that as she´s a completely mad woman!
I was in the same boat. Where in Germany are you? I could give you the name of my Endocrinologist. How do I do that on here? PM? I'm new to the whole forum thing, this is actually the first one I've ever joined.
If you're not near Berlin, I would personally switch thyroidologists / endocrinologists and find one who is knowledgeable and open minded enough to help you. I know it's not fun, but it's also pointless to waste your time and health on a doctor who isn't able to properly treat you.
I have recovered on T3 alone. I had also been on levo initially then levo/T3 (felt an immediate improvement). Then various NDT's but am now on T3 only and am well with no clinical symptoms, so I am extremely fortunate as I know how difficult it can be to source what suits. Thousands do fine on levothyroxine and sometimes changing the make can improve the patient's symptoms. I think doctors should prescribe 'other' than levothyroxine when patient is obviously complaining of still feeling unwell. Unfortunately the guidelines state levothyroxine alone and I think that's ridiculous as we are all so different and it's definitely not one size fits all as the associations imagine. They are willing to prescribe other medications for clinical symptoms but not sufficient or alternative thyroid hormones to make the patient well and to get back to living and enjoying symptom-free life again. Some have even had to give up work but the Associations do not care it would appear.
Just to reiterate, it's not always just a straight switchover i.e. when you switch you still have to take account of any 'new' symptoms and adjust up/down as you 'feel'. You keep onto your new dose for a few weeks unless you have very fast heart rate or high temp reduce down. If after a few weeks and get symptoms, new or old ones, adjust up slowly.
Regarding high temperature, any idea as to over what range I need to take it seriously?
I ask this because I´ve had to stick to Levo for now due to the lack of options at the moment, and although I haven´t check my body temperature, I feel on days very warm (even in -5 celsuis!) and on days I feel my hands and feet freezing even if I´m sitting next to a heater!
I believe a 'high temp' will be higher than which is normal for the population in general and you'd feel unwell.
Sometimes our temp doesn't come back to what was 'normal' for us before being hypo and we might have had a low temp for years before being diagnosed. With hypo everything slows, pulse/temp in particular and until we reach an optimum dose (which we don't know what it will be) which raises our metabolism sufficiently we might still feel cold, particularly in the extremities. I am not medically qualified but many with hypothyroidism complain of coldness. My feet used to be freezing but not now.
Does your blood test too suggest that you´re okay on T3 or do you get your dose adjusted often? I ask this because I´ve read the suggestion that blood tests don´t reflect stable results on T3, whereas a dose adjustment is rarely needed with T4. Could be wrong of course!
I have been on the same dose of T3 for about 3 years now. I increased gradually and felt well even before I reached the dose I take now.. When I went beyond by 1/4 tablet my heart played up a little so dropped down and have been stable since, so far.
I follow a doctor (deceased now) who only took blood tests for the initial diagnosis and who then only took account of how the patient was feeling on each particular dose. That's how doctors did so, before blood tests and levothyroxine were introduced. Another doctor who was seeing patients who weren't recovering or remained undiagnosed was taught in a similar fashion and wrote to the Association to state that they were wrong and that how they diagnosed and treated was also keeping many unwell and they were coming to see him.
Blood tests do not inform the doctors of how the patient is feeling, it's only us who can complain or tell doctor we now feel well. Unfortunately , the modern doctors ignore the patient in favour of the test.
If we add T3 or take NDT our blood tests cannot correspond as they were invented for levothyroxine (T4) only. So if we add T3 to T4, our T3 will appear higher and T4 will be lower, due to adding T3.
I am not medically qualified and have hypothyroidism which was undiagnosed and unmedicated.
Do you mind me asking about you self medicating - my T4 is 21.13 top of range 22 and my T3 is 3.74 bottom of range 3.1 so nearly out of range, feel terrible and have been advised on here I'm not converting but although I read up on this it's still double dutch to me. Have had 2 'normal' thyroid tests at Dr's - the last one they did test T3 & T4 - I'm waiting till April to do another BH test but if that comes back normal I don't know what I'll do. Much appreciated if you could reply x
We don't want 'normal' results. The doctor does but they are mistaken. We need FT4 and FT3 towards the upper end of the range and TSH 1 or lower. We want 'optimal' hormones that makes us well (normal )
When our doctors state 'normal' it doesn't mean we, the patients, feel normal health.
All that means is that we are within a 'range' and even if we are at the bottom or the top the doctor will pronounce normal. They don't understand that both Frees, i.e. T3, T4 have to be towards the top and not the bottom. So the patient has to educate the doctor, if he/she listens.
Sorry to jump in on your post Joshua2016 ! shaws just wanted to ask about optimal ranges if that is ok? When on T3 only I have been told to expect suppressed TSH, T4 in a bottom or below range and T3 top end of the range and that would be ok. Is that correct? (Although I am aware that ranges is not everything and symptoms or lack of them being more important) I wasn't sure if I should be worried about T4 being very under range?
If our body isn't producing T4 as it would do if healthy, our T4 will be low. It's main job is to convert to T3 so if hypo our T4 will be low and if supplementing with T3 it will be higher. Optimal means that we feel well with no clinical symptoms (dose is immaterial).
The blood tests were introduced along with levothyroxine (T4) alone so if we have added some T3 or take T3 only they cannot correspond with the standard blood test results. Bearing in mind I'm not medically qualified in anything, particularly with the function of the thyroid gland.
Experience is great in that it makes us try to discover why we aren't improving or try to solve why. I finally came to the conclusion that the guidelines do not 'fit' everyone and thanks to the internet and Thyroiduk.org.uk where would I be and lots of members. We have been helped by doing to opposite to the recommended guidelines i.e. dose until symptoms are relieved, or be able to trial alternatives (but forbidden due to False Statements being made and regulations initiated). Why would very ill people want to take replacement hormones if they aren't recovering. That's supposed to be the criteria, i.e. symptoms are resolved and patient is well.
Excerpt:
It is important to remember that the majority of thyroid hormone produced and secreted by the thyroid (about 90%) is T4. Very little of the more biologically potent T3 is derived from our thyroid gland. However, our body generates its own T3 from T4 by removing a single iodine molecule, using an enzyme called a deiodinase. This process happens naturally in many of our tissues, hence much of our thyroid-derived T4 is actually converted, in a regulated manner as needed, to T3. Similarly, patients taking thyroxine (T4) supplementation in the form of a tablet or pill will actually convert, in a regulated manner, considerable amounts of administered T4 to T3, as needed constantly throughout the day.
Bearing in mind that many do fine on levothyroxine and they certainly wouldn't be on this forum once they've got to an optimum dose and getting on with their lives.
When the doctor tells us 'normal' they are referring only to the blood test results which mean they are within 'a range'. It doesn't mean we, the patient feels normal which we don't usually and are palmed off by thinking we should feel 'normal'. To feel more 'normal' we need a TSH of 1 or lower, a Free T3 and Free T4 towards the upper part of the range not middle or lower end. Unfortunatly it appears that Endos don't know this.
We also have to have minerals/vitamins towards the top of the range because if they're low we can also have unpleasant symptoms, so B12, Vit D, iron, ferritin and folate have to be tested and supplements given.
Are you aware that when having a blood test it should be at the very earliest time, fasting (although you can drink water). Also allow about 24 hours gap between your last dose and the test. Get a print-out of the results with the ranges and post on a new question
Hi, how did you find out how much to take, were you not converting - don't know if me just taking T3 would help, where do you get it from, any side effects, how long did it take to work and did you tell your Dr - anything you think would help me - I really am at my wit's end x
There should be no side effects from taking T3. You'd only get side effects if you took too much or too little and you'd just drop back to the previous dose.
I find it interesting that you mention that, the bit about getting no side-effects from T3 unless one´s over or under-medicated. Barring a case like me, should the same not hold true for T4 as well? That is, that a well-dosed T4 medicine too shouldn´t give side-effects?
I can only go by my personal experience in that I was far more unwell when prescribed levothyroxine than before my being finally diagnosed with a TSH of 100. So over/under would have made no difference I felt awful from day one.
I also tried combinations too before going onto T3 alone. If I take a little too much T3 my heart gently lets me know
In the USA the pharmacist gives info to patients when dispensing T3:-
Now, to address your rheumatologist’s assertion that T3 is dangerous, and his implication that amitriptyline is not. I think the best way to reply to him is to quote publications that are available to him. In the USA, when patients get their prescriptions filled for T3 (usually the brand Cytomel), the pharmacist usually gives them a leaflet on the product. The leaflet contains the following statement:
This statement makes a fact perfectly clear: When used sensibly, T3 is extraordinarily safe among prescribed drugs. When I say extraordinarily safe, I’m comparing T3 with drugs such as the amitriptyline which your rheumatologist prescribes for you.
Some people just add some T3 to their T4 and that resolves their symptoms. Some reduce T4 slightly. You can switch straight over from one to another but if so I'd take a lesser amount of T3 to begin with then after a week or so add a small amount until I felt well. Taking pulse/temp before you begin and keeping a record for a short time to keep eye on both.
Thank you so much everyone for the very detailed and informative responses to my posts and questions. I´m for the time being prescribed a liquid form of Levo to see how it works. Although I don´t have high hopes of it either, but what´s the harm in trying? If anything, if the liquid form too doesn´t work then we can at least for a surety rule that T4 is the problem here, instead of any inactive ingredients in any of its tablet brands available, because they´ve all been tried.
Will keep you updated if there´s any success with it, or if I get an NDT or T3 prescribed. A big IF I´m afraid!
If you are allergic to tablet and liquid Levothyroxine you might also be allergic to T4 in NDT, not that you are likely to get NDT prescribed on NHS because it isn't licensed for UK use.
I might add here that I´m in Germany, although it could well be that the laws might be the same here too. Thanks either way for your help.
Also, I´ll talk to my GP about doing a liver function test as well, although I feel she´ll come to that at the very end. Still, she´s a thousand times better, gentler and friendlier than the thyroidologist. That test is done through a blood test or what?
I don't know what the position is with NDT in Germany. T3 isn't the rip off price it is in the UK so your thyroidologist might be amenable to trialling T4+T3 or T3 only.
Clutter shaws Hidden How is the dosing of a T3 medicine in comparison to a T4 one? For example, if someone´s prescribed Levothyroxine dose is 50 mcg or let´s say 75, would it be the same for a T3-alone therapy?
As a footnote, although it´s certainly better and gentler than tablets, but I´m not doing really great on the liquid Levo either. It´s picking up pace with time and I just had an awful night, full of sweats and heart palpitations. I´m planning on seeing my GP soon on this. Surely, an alternative approach to the therapy should at least be tried I feel, and if I go on to do as bad or worse than on Levo, then fair enough, that´s my luck!
T4 is a synthetic hormone and is inactive. It's job is to convert to T3 and depending on a person's body, say 100mcg might have a different effect on three people on the same dose. (I have no medical qualifications).
Many feel much better on a combination dose, i.e. T4/T3 - some on NDT which is the original thyroid hormones but some countries don't supply it. Recent research studies have proven that T3/T4 is best.
For me, I've tried T4, T4/T3, several NDTs and finally T3 and improving on each change but normal on T3 only. I haven't had a blood test for the defective gene in which some people cannot convert T4 to T3.
I hope you find your perfect dose soon and I think when first diagnosed we've no idea what is ahead of us. i..e for instance if we have a B12 deficiecy - no problems with dose. I also think we should be allowed to have trials of different thyroid hormones if not improving. There's nothing worse than getting a diagnosis and being unaware that when on hormone replacement we may still be unwell or feel worse than before diagnosis.
dang Well, I´ve my next appointment on the 18th with a thyroidologist. To avoid wasting time, I requested the receptionist to ask the doctor and let me know in advance whether he can in a one-off case even consider any alternative therapy, but she said that that will be decided by him only after the appointment! Fingers crossed that it won´t be the case of hearing the same old.
Clutter shaws I got hold of my blood report (from 12th January). It states: "TSH 2.31" and then below it states that the normal range is 0.27 - 4.20. Does that tell you anything? I´m got zilch knowledge of these readings mind you.
TSH 2.31 is a little high for comfort for most people taking Levothyroxine. Most people will be comfortable with TSH 1.0 or lower. You would need to increase your Levothyroxine dose or switch to an alternative thyroid replacement to lower TSH.
Thanks for the inputs on this. Really appreciate it.
Nah, increasing Levothyroxine beyong 15 mcg simply doesn´t work for me, and on that dose too I need breaks in between to recover from the toxicity symptoms. Waiting for the appointment with a new thyroidologist on the 17th, let´s see whether he´s ready to try any alternatives.
With that read, TSH 2.31, on my blood report, is there any particular standard dose of Levothyroxine that´s to be taken, or does that vary from patient to patient?
I am on T3 only and have been since summer of 2012
I need 'supraphysiological' doses to be well, the highest I have been is 180mcg daily, I NEVER felt 'hyper'/overtreated side-effects, I only ever felt 'hypo' if I was on a dose not high enough, but never felt overmedicated!
I am currently on 160mcg daily of T3, I take it all at once as I wake up, multi dosing never did anything good for me.
the lowest dose of T3 I can take without feeling hypo is 160mcg daily so am sticking to that for now.
I have been on 160mcg or higher for the past 4 and a half years, my heart is in top condition (I was given a 24hr ECG and an echo after a road traffic accident last december and all was perfect with my heart).
T4 gives me hypo symptoms I just will not take it.
I can 'tolerate' a little NDT but no more than one grain
Were you on Levothyroxine before finally being prescribed T3? If so, what was your prescribed dose on that?
Also, since the fact that you feel well only on such high dose of T3, I suppose your hypothyroidism might be of a more seriously level than many others, no?
Clutter shaws dang Jazzw The appointment on the 17th with a thyroidologist that I´d told you all about, it got postponed to the 23rd for some reasons.
Anyway, so I was there yesterday. His interpretation of my TSH reading of 2.31 is that this is perfectly within the normal range and isn´t even a case of an under-active thyroid. His suggestion as a way out to counter the hypo symptoms that I get without it, is to up the dose of my Vitamin D to 3000 and of course discontinue Levothyroxine altogether, and then he´ll do a blood test maybe after two months, depending on if I´m not feeling well, to see how things look.
Armour Thyroid didn´t even qualify for a discussion, and "T3 is reserved for special, exceptional and a rarity of cases", so neither has been prescribed. He says it´s my choice whether I let myself be treated by those doctors who prescribe and recommend me Levothyroxine which I´m having a hellish time with, or by him who at least has thought of a way out via Vitamin D.
So, the cycle continues... I took Vitamin D in dose of 3000 yesterday, somehow got a boost of energy for a couple of hours before slipping into spells of dizziness! I haven´t taken Levo today, and first day without it wouldn´t be too bad, but the dizziness caused by V´D hasn´t relented even today. I´m planning a break from it and then, depending on how I´m doing, start taking it again but in a dose of 2000 maybe.
Sometimes we are between the devil and the deep blue sea. We want to get better and suggestions are on opposite sides sometimes. On the following link it says:-
If you recently started taking D-3 and you are experiencing dizziness, it is probably not due to hypercalcemia. If you are experiencing dizziness, seek medical attention. Talk to your doctor before taking vitamin D-3 supplements.
However, both Vit D and Vit B12 are essential pro-hormones and so many on the forum do have too low levels which can also cause upleasant symptoms or with regard to B12 might proceed to dementia/alzeimers.
😡 this angers me. What a ridiculous doctor. Is the vit D 3,000 per week or per day? And is it vit D tablets or are they liquid/oil capsules? What was your vit D result at last blood test?
Josh from my experience Levo didn't lower my TSH enough, yet sent my FT4 over range, this caused me issues and left the docs scratching their heads until they finally agreed to send me to Endo. Have you had your FT4 FT3 tested? (By the way I PMed you)
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