Anyone else on T3 only?: Hi everyone, I am just... - Thyroid UK

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Anyone else on T3 only?

ReneeC76 profile image
68 Replies

Hi everyone, I am just curious who else might be on T3 only and what your dosage is, what your starting dosage was, how quickly you increased, and also how you felt while you tweaked your dosage.

I was on T4 only, originally, went to T4/T3 combo, and now on T3 only. I had RAI last year and assume no thyroid function. I increased my T3 to 15 mcg from 10.

I'd love to hear others' experiences and dosages, how long it took you to feel optimal or if you're currently in the process.

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shaws profile image
shawsAdministrator

I'm on T3 only. I have adjusted dose several times. I take 25mcg once daily when I get up with one full glass of water and wait an hour before eating.

I have had a couple of adjustments but it should be done slowly whilst taking notice of symptoms being relieved.

How long did it take to feel better? I'd say instantly as levo gave me awful palpitations as well as a racing heart - no matter how low the dose was.

ReneeC76 profile image
ReneeC76 in reply to shaws

I'm glad you felt better right away. I did too. Was way in the dumps from high reverse T3, bad proper conversion on levo. I feel great for the most part now but it's early on and I'm sure more tweaking to come soon.

I've been curious about the differences in everyone's dosage. I read about a woman who takes 112 mcg per day. That seemed extreme but who knows.

shaws profile image
shawsAdministrator in reply to ReneeC76

I know of another person who took 150mcg of T3 (in the middle of the night) as he didn't want any interference with the uptake. He was a scientist/researcher and Adviser to TUK before his accidental death. His patients were prescribed either NDT or T3 for those who were 'resistant' to thyroid hormones as he was also resistant.

ReneeC76 profile image
ReneeC76 in reply to shaws

The person I read about was someone I then replied to in curiousity- this was on another forum- and she was pretty critical of the low dose I'm taking right now. I understand thyroid hormone resistance and didn't criticize her at all, just was curious about her story because she claimed she had partial thyroid function. She ended up just being a know it all and said because I was new to T3 only, I need to re-examine my dosage because a person can't survive on such a low dose. At first she had me questioning myself, then I realized she was just a nutty person.

Welshrarebit77 profile image
Welshrarebit77 in reply to shaws

Can I ask how much you were taking on leveothyroxine before you changed to 25mcg in morning? Thanks

shaws profile image
shawsAdministrator in reply to Welshrarebit77

I started on the usual 25mcg of T4 and it was increased to around 75mcg/100mcg but I never, ever, felt well on levo and I also had awful palpitations. That could have been due to having a TSH of 100 when diagnosed.

The cardiologist was puzzled about the palpitations (always in the middle of the night) and he was contemplating putting an 'implant' in heart but T3 - even added to T4 - calmed heart down and never needed to see cardiologist again. When T3 was added to a reduced T4, I felt an immense difference.

Eventually I went onto T3 only. Then the NHS withdrew T3, without any notice, due to an immense price rise for a month's prescription. There were panic stations by many people for whom T3 resolved their symptoms.

The medical professionals rarely prescribe T3 due to the cost (in UK) and some hypo patients been forced to source their own. There have also been shortages of T3.

Omi7038 profile image
Omi7038 in reply to shaws

Hello

I too take my 20 mcg T3 in morning. I was curious how many hours after your dose do you draw blood for testing? How many weeks after dose change do you wait for lab test ?

Also what was your TSH before and after starting T3?

Would it make any difference if I take single dose or split dose ( as many say to split)?

Also wanted to ask if having neck/scapular/shoulder pain has something to do with hypo or hyper?

shaws profile image
shawsAdministrator in reply to Omi7038

If having a blood test for thyroid hormones~

Always have the earliest possible time for blood draw.

Don't eat or take thyroid hormones until after the blood has been drawn. I drink water.

My TSH was 100 when - finally - diagnosed as having hypothyroidism. My GP had phoned me a day earlier to state that Ihad no problems.

I follow the method stated by Thyroiduk's Adviser who was called Dr Lowe:-

drlowe.com/thyroidscience/c...

and it is worthwhile reading his site even if, unfortunately, had a bad fall that caused his demise.

Dr Lowe also took T3 (one daily dose )so that it saturated all of the T3 receptor cells) and 'they' in turn sent out 'waves' throughout the day.and you can also read :-

drlowe.com/thyroidscience/c...

fortunata profile image
fortunata

I’m on Liothyronine only. Have been prescribed it since 2015. I was taking 60mcgs a day. Two x 20mcg tablets in the morning and one x 20mcg tablet last thing at night. I have done extremely well on this and have felt very well and healthy.

However, I have also been taking 4.5mls of LDN last thing at night for three years. Last week, I began to feel hot and sweaty and couldn’t sleep, and my heart was racing at 75 beats a minute.

I have lowered my dose to 40mcgs a day and now feel very well and healthy again, with a resting pulse rate of about 56bpm.

I think the continued dose of LDN has altered the way my body uses the T3 and I now no longer need such a high dose.

Hope this helps. F.

ReneeC76 profile image
ReneeC76 in reply to fortunata

That's good to know about the LDN. Someone suggested it to me recently and I was considering posting a question about it. It sounds like you are you glad with your results on the LDN? My antibodies were through the roof. I'm better but wondered if many people believe the LDN is worthwhile for their situation.

fortunata profile image
fortunata in reply to ReneeC76

My antibodies were originally >1000. I had them tested about two years ago, after a year on LDN, and they’d dropped to >600.

I don’t know what they are now but I feel well and very healthy so will continue with the LDN. I’d certainly recommend it.

ReneeC76 profile image
ReneeC76 in reply to fortunata

Very happy it's doing well for you. Thank you, I will be asking my dr about it.

IgnoranceSound profile image
IgnoranceSound in reply to fortunata

Oh my God, Did I understood right? You are taking LDN for 3 years?

I was trying it but only for couple months. It didn't do anything. I want to try it again.

fortunata profile image
fortunata in reply to IgnoranceSound

I tried it first time for six months and it didn’t seem to do anything, so I stopped.

Then I read more about it and decided to give it another go. That is now three years ago. I think you have to be prepared to stick at it. When I look back at pics of me from three years ago, I can see how my face has lost its puffy look and even my ankles have slimmed down... I feel as if the whole-body inflammation I had has gone.

I am sixty and can walk five or six miles most days and feel fit and healthy.

IgnoranceSound profile image
IgnoranceSound in reply to fortunata

Glad you feel good :) I'm 29 and feel worst than you 😂 I guess I need to give LDN another chance then 😂

Welshrarebit77 profile image
Welshrarebit77 in reply to fortunata

Can I ask what ldn is please.

fortunata profile image
fortunata in reply to Welshrarebit77

It’s Low Dose Naltrexone. Google LDNScience.org.

Marz profile image
Marz in reply to fortunata

ldnresearchtrust.org

McMurtagh profile image
McMurtagh in reply to fortunata

75 beats a minute isn’t racing .... that’s well within healthy/normal 🤔

jkozlow3 profile image
jkozlow3 in reply to McMurtagh

Exactly. Some would argue that a pulse of 75 is healthier than having a pulse in the 60s (unless you are SERIOUS athlete that is. When my thyroid meds dosage is too low, my pulse drops into the low 60s. I use heart rate and temperature to monitor and adjust my dosage.

I believe the average heart rate is approximately 72.

fortunata profile image
fortunata in reply to jkozlow3

I monitor my pulse and HR three times a day.

Temp is usually between 36.3 and 36.6

And HR between 54 and 58. I’m very fit so a resting HR of 75 feels very quick for me.

fortunata profile image
fortunata in reply to McMurtagh

It is when you’re very fit and normal bpm is about 54-58.

McMurtagh profile image
McMurtagh in reply to fortunata

That would be usual for an athlete, not a normal healthy person

fortunata profile image
fortunata in reply to McMurtagh

I am very athletic.

meadow53 profile image
meadow53 in reply to fortunata

I stopped taking LDN after 6 month because I felt no difference. Thanks for your post, I will stick with it. I have to work up to 4.5 again, 3 is activating for me & already an insomniac.. Appreciate you sharing your experience.

nobodysdriving profile image
nobodysdriving

Hi Renee

I have been on T3 only since 2012

I initially worked up to 180mcg daily, taken all at once when I wake up in the morning.

Fast forward 8 years later to now and am still on T3 only but I have managed to reduce my dose over the years to 140mcg and just now since 2 days ago started trialling 120mcg.

I have tried/toyed with taking it over several doses during the day or once a day and overall I do better at taking it all at once. Interestingly enough the american T3 cytomel patient leaflet says to take it once a day.....so this is ok to do, although I do acknowledge that many many patients take it over 2/3/4/5 daily doses.

I am still doing well, I crashed 'badly' last year when I tried to reduce the T3 dose (gradually) all the way down to 60 mcg daily, I nearly went into a thyroid coma! I guess if I ever manage to get down to 'so little' T3 it will be over years and years and not months as it took me 8 years to drop 60 mcg LOL

I am posting not to say that you need such dosage but to point out that people are SO different there is no right dosage for 2 people... Wish it was that easy

Welshrarebit77 profile image
Welshrarebit77 in reply to nobodysdriving

Can I ask what your dose of levethyroxind was before changing to T3?

nobodysdriving profile image
nobodysdriving in reply to Welshrarebit77

I started thyroid treatment in Jan/Feb 2012, tried levo up at (I think) 125 or 150 mcg but got worse in my hypo symptoms as I reached higher dosages (started I think on 75?? can't remember), switched to NDT, then added T3 to that, then dropped the NDT altogether, by 6 months later I was on 180mcg T3 only....so in essence I don't know as I could never raise enough to feel well on either levo or NDT.

I 'toyed' with the idea of trying to go back to levo and or NDT or a T4/T3 combination but am so well I really cannot face the prospect of doing this for 'what benefit' as I am well so why change if it's working?

shaws profile image
shawsAdministrator in reply to nobodysdriving

I reiterate helvella's response to you also.

helvella profile image
helvellaAdministratorThyroid UK in reply to nobodysdriving

Good to hear from you, NBD.

Hope you are well?

Responses like that can be so, so helpful. :-)

nobodysdriving profile image
nobodysdriving in reply to helvella

thank you Helvella and Shaws, I am fine :)

as above: I am still on T3 only and for past 3 years have been battling with my CCG (through appeals/letters/second opinions/official complaints/ombudsman/MP etc) to keep my NHS prescription ongoing....

Last year I tried to reduce all the way down to 60mcg but got to a point where I had slurred speech, delayed movement, severe brain fog, extreme sudden onset tiredness to the point of being upright and almost normal one second to immediately having to lie down as I felt my body turned into a jelly-fish (with lightheadedness)...

It was all a bit scary...I remember going to bed and telling my husband (yes I got married!) to please grab me a T3 tablet as I was afraid I was going to die in my sleep!!! I could not get up you see....

Anyway, I did all that to 'please' the CCG, it took me a good 8 months to get back to normal and I still think that some 'niggling' problem I have now with extreme sudden onset tiredness I have now is because my body has still 'not' got back to normal after suffering so much by that decrease!! I had blood test results that I think both my endo and GP were astonished I was still alive and breathing! (TSH of 0.27 or something like that... with fT4 of 4 and fT3 almost undetectable!!!)

I don't want to detracted from the original post/poster sorry

In regards to what welshrarebit77 was asking:

- I think that with some individuals (and certainly with me) you 'cannot' compare a dosage of levothyroxine with liothyronine (T4 / T3) as I only 'tolerated' up to 150mcg of levo, however 180mcg of T3 made me perfectly healthy and when you ask any doctor about 'how many mcg of T4 are 180 mcg of T3 equivalent to' they will all say: each 20 mcg of T3 is equivalent to 100mcg of T4....under that equation I should be 'healthy' at 900mcg of Levo daily??? (anything more than 75mcg makes me progressively worse and any less keeps me ill!)

ancientdeity profile image
ancientdeity in reply to nobodysdriving

Does anyone know a reliable source to get T3 from, please?

ReneeC76 profile image
ReneeC76 in reply to nobodysdriving

Thank you for your reply. Your story is one I was looking for.... The dosage is individual and each person's body is different, even when everything else is "optimal." I'm a nutritionist and started advising a local wellness doctor and his patients on meal plans and liver function/methylation, etc. The one and only constant seems to be that most patients with a sluggish or poorly functioning liver needs excessive T3. And notice I said "most" and not "all." There is always a group who is so highly individualized it might take lifetimes tonunderstand their situation. Bottom line on T3 is, take what makes you feel your best. Take what helps you function and have a chance at a happy life. That's all any of us can ultimately do.

Luisa317 profile image
Luisa317 in reply to ReneeC76

Exactly! Thank you for that. Being keto diet I had to reduce my t3 dose to 35mcg. It sounds so low but I get palps and my hair fall out trying to increase. Before keto dose was about 60mcg.

GKeith profile image
GKeith in reply to nobodysdriving

180 mcg of T3 is equal to anywhere from 440-720 mcgs of T4? That's awful high man? Do you have a thyroid gland?

I have been on T3 only for the past 15 months. I am currently taking 62.5 mcg daily, split into 3 doses, 25 mcg at 3.00 a.m., 25 mcg at 10.00 a.m. and 12.5 mcg at 4.00 p.m. I took many months to get to this dose, starting with 5 mcg. I don't believe in rushing things! I do feel better than I did on Levo, certainly my brain is clearer and I am able to concentrate for longer periods. I am still not well though, but believe that is to do with other nutritional issues that I am working on.

shaws profile image
shawsAdministrator in reply to

I shall give you a link from a Scientist/researcher and an expert in the use of T3. Unfortunately he died due to an accident.

He took one dose of 150mcg of T3 in the middle of the night so that nothing interfered with the uptake and he had Thyroid Hormone Resistance which meant he had to take al arger dose than would be usual.

naturalthyroidsolutions.com...

ancientdeity profile image
ancientdeity in reply to

Did your Dr. tell you to take it at 3:00 am?

in reply to ancientdeity

No. I follow Paul Robinson's circadian T3 method (CT3M). By taking a dose in the early hours before one's normal get up time, it's possible to stimulate cortisol production, if you have low waking cortisol, which I did.

ancientdeity profile image
ancientdeity in reply to

Were you prescribed T3? If so, where? (if you don't mind sharing)

in reply to ancientdeity

No, I was prescribed Levothyroxine, but I soon found it did little for me as I don't convert well. In the end I decided to try T3 myself, and self-sourced some, as my GP said I wouldn't be prescribed it as I am 'euthyroid' according to my labs, i.e. am 'fine'. I was not find. So I bought some and noticed the difference immediately. Have now dropped Levo altogether. My GP didn't know any of this, but due to coronavirus I have called the surgery and told them exactly what I am taking, in case I end up in hospital. I haven't yet spoken to my own GP due to all the kerfuffle over the virus but I imagine she won't approve.

ancientdeity profile image
ancientdeity in reply to

Same here! My endocrinologist would only prescribe Levo and never change it, not even after too many years on it. I only felt worse and worse, more miserable with every day that passed. I also gained so much weight that I couldn't recognize myself in the mirror anymore. I used to be slim. I am so tired of living without energy or excitement for things. I don't feel like myself. The brain fog is also immense. My hope now is to start T3 on my own as well, but I am having a very hard time finding it! Could you let me know where were you able to get your T3 from? I've heard people can only share this kind of info through PM (I'm new to the forum).

Thank you for sharing your experience, it was even more motivating!

ReneeC76 profile image
ReneeC76 in reply to

Thank you. I'm glad you are doing better on T3 but do hope you will eventually thrive on it. Some of us can't rush things on T3, as our bodies can't handle it. Some of us have to rush things, or we would have died. I was ignored by doctors to the point I couldn't walk 10 feet. And I don't mean it was "difficult" to walk 10 feet. I couldn't. I couldn't breathe. My diaphragm stopped functioning, my lungs wouldn't fill. It was ridiculous, considering how supposedly Advanced the medical industry is today. Had to figure it all out myself. My first dose of T3 was 100 micrograms in a day. It had almost no effect on me. But after a week I was down to taking almost none. Went through a hyperthyroid incident that told me my body had a breakthrough and went to a 10 micrograms per day dosage for a while. This disease is certainly unique and unpredictable. I feel for anyone who has it and hope the best for you and others who are on the journey to feel normal again.

ancientdeity profile image
ancientdeity in reply to ReneeC76

I can totally relate to it! I honestly feel you. Sounds like you were talking about me!! I am sick of living like this, life is so miserable without T3!

BB001 profile image
BB001

Have a look at Paul Robinson's website titled paulrobinsonthyroid.com/

(Previously called recoveringwithT3.com)

I think youll find his blog posts and FILES section very useful.

He's also written 3 books that might help you one of which is recovering with T3

And he's got a Facebook group called The Thyroid Patients manual.

A related facebook group is Recovering with T3 which might also be of interest.

ReneeC76 profile image
ReneeC76 in reply to BB001

Thank you. I was on the Circadian T3 method briefly, at the beginning. But my adrenals punched through pretty quickly and I couldn't handle that method anymore. I think it's spectacular for those who have adrenal issues. I have not seen his Facebook page but I certainly will check it out. I think he is great, his journey really is amazing and inspiring. I will also look at the recovering with T3 Facebook page, thank you for that.

Babette profile image
Babette

I'm on T3 only now, and went from 100 mcg T4 to 20 mcg T3. After a few years, the endo asked me to increase the dose purely on bloods (not symptoms) I'm now on 30 mcg, split into 10 mcg 3 times a day.

shaws profile image
shawsAdministrator in reply to Babette

I take 1 dose of T3 daily - I've read that T3 has to saturate all of the T3 receptor cells and that one dose sends out 'waves' throughout the 24 hours.

This link may be helpful too, and the author, now deceased, was an expert in Thyroid Hormone Resistance.

nebula.wsimg.com/540ba6bc6c...

Babette profile image
Babette in reply to shaws

Thanks for your reply. I've tried taking the full dose in one go and it made me feel anxious as though hyper. Taking it throughout the day works for me.

ReneeC76 profile image
ReneeC76 in reply to shaws

I find the one dose per day in the night concept interesting. I've been wondering if separating the dose throughout the day isn't actually providing our bodies with the optimal impact. If we split the dose, by the time we take our 2nd, 3rd, etc doses, the previous have been somewhat utilized and maybe we aren't experiencing maximum effect and maybe not experiencing a maximal pharmacologic response. One dose per day is interesting, especially with it being the recommendation by Cytomel, and I'm going to look into this. Thank you.

shaws profile image
shawsAdministrator in reply to ReneeC76

I follow the method of a doctor (now deceased through an accident), who himself, was an expert on T3 especially for people who were 'thyroid hormone resistant'. I don't think there are may medical professionals who are aware of Resistance. The people who are require larger doses of T3 than we might take. He was also an Adviser to Thyroiduk.org.uk.

By taking one daily dose, (not high i.e. 25mcg T3) I take it at the same time every day, don't have to avoid eating at a particular time and have a normal lifestyle but best of all I don't have symptoms.

Levo did nothing for me and made me very unwell. I had to diagnosed myself. No doctor nor A&E, nor specialists even thought I could be hypothyroid and in the past nearly all doctors would be able to diagnose a person who was hypothyroid - just by their clinical symptoms alone.

Dr Lowe stated that all of the millions of T3 receptor cells are saturated through taking a once daily dose and it then sends out 'waves until next dose is due.

(He took his in the middle of the night so that nothing interfered with the uptake of T3,) When the receptor cells are saturated that one dose lasts between one to three days by sending 'out waves'. I trialled this myself and my one dose lasted three days. I take once daily dose when I get up.

He would prescribe NDT for patients with hypothyroidism but for those who were resistant it was T3.

You may be interested in the following link by him

naturalthyroidsolutions.com/

He would never prescribe levothyroxine and stated that it was due to corruption that levo became the No.1. prescription (i.e. that doctors were paid for prescribing levo when it was first introduced.

Regards

N1mble profile image
N1mble

I have not heard of LDN before and have just looked up some of the extensive history of this drug. It sounds amazing. Can anyone please advise me how it is obtained in the UK? Is it a prescription only drug?

Thank you.

fortunata profile image
fortunata in reply to N1mble

I get mine from a chemist called Dixon’s in Scotland.

fortunata profile image
fortunata in reply to N1mble

Sorry. Dickson. If you google dicksonchemist.co.uk you’ll get their website.

Quasarlis profile image
Quasarlis

Hello

I’m more or less on T3 only ... I was taking 100mcg’s a day until about a month ago when I had my NHS blood test that showed me to be over medicating ... Wasn’t that much, only a few points. The GP told me to halve my T3 intake and add 50mcg’s of Levo, I did what he said and a week in I started to feel rubbish again, put all the weight back on that took me over a year to loose, feel tired all the time and so on .... I have since added another 25mcg’s of T3 and I’m seeing how that goes. I even told the Dr that I was feeling much better on the T3 and that I took Levo around twice a week .. He said ‘Yes you probably do feel better but it will put strain on your heart’ ... I felt ok on that dose, didn’t have any real side effects at all ... If I did feel a bit over I’d take less the next day ... The way I see it is if you feel better, can function better, can maintain your weight etc I think that’s more important than feeling like death because the Dr says there’s too much T3 in ya blood ... Yes it’s in ya blood but it’s like a reservoir that your body pulls from as and when, doesn’t uptake it if your cells have enough as far as I understand it. I did have a bit of a ‘hyper spell’ some weeks ago but as said I tweak my dose from day to day and it levels out. T4 never worked for me, I ended up loaded with RT3 that was causing my TSH to stay high and above range as well as high and out of range T4 due to the T4 being mostly converted to RT3, blocking the uptake and making my body still think I was hypo ... Was on 225 of Levo at one point and STILL has high out of range TSH.

Take it day by day, note how you feel, if you feel better then that’s what matters!! Do you have a reliable source of T3? I can give you one if needed, the thing is, is that during this pandemic it might be hard to get shipped but I’m not sure.

ReneeC76 profile image
ReneeC76 in reply to Quasarlis

Great advice. I fully agree with you that regardless of what a doctor says or even what our labs say, how good you are feeling on it is the most important thing. I was like you and was converting the majority of my T4 Med to rt3. What I wouldn't give to be able to go back and know the things I know now! I'm sure we all feel that way. The thing that sickens me as doctors should know these things. Autoimmune and thyroid diseases are some of the most common diseases in the entire world and doctors are completely ignorant to what best or even to how our bodies respond to these diseases.

I will absolutely take note of how I feel each day on this T3 and remember that how good I feel is what matters most. I did have a reliable source for T3 but I am currently looking for a new one. I will send you a private message about this.

Quasarlis profile image
Quasarlis

I also have Hashimoto’s too so I’m not sure how that would differ on dosage and how you feel as opposed to UAT.

thyr01d profile image
thyr01d

Hi, I'm on T3 only. My TSH was over 95 when I first started on it, which is coma level and the consultant said my thyroid was producing virtually nothing at all, so I guess that's similar to you now.

Starting dose, was, if I remember correctly 10 mcg twice a day and increased over 3 years to my current 40 mcg, sometimes only 30 mcg, occasionally 50mcg. I rarely seem to need 50mcg now and am often fine with 30 mcg, which I think is linked with starting oestrogen.

What I noticed immediately, first day, was an absence of pain in my abdomen. Quite soon I felt less exhausted and slowly improved to now feeling pretty normal, rarely needing to sleep in the day (from sleeping most of the day and struggling around when awake). I'd say it's only in the last few weeks I really feel as well as I'd expect to for my age, so that's taken 3 and a half years or so.

When I take it seems to make a difference, if I take the first dose, 20 mcg, between 3 and 6 am I seem to feel best, then I take two more 10 mcg doses usually spaced out through the day.

Hope that's been of some interest.

Best of luck to you

ReneeC76 profile image
ReneeC76 in reply to thyr01d

Thank you. I'm starting to understand that what you say about the time of day you take your first dose is actually pretty important. At least to me it is. I used to take it too early and then it would kind of exhaust me for the first part of the day and make me feel a bit hyper. Then I would take it too late and I would feel sluggish. I take it at just the right time in the morning, the other doses throughout the day don't matter quite as much as far as timing. I'm glad to hear that you are doing well on the T3. When you have improvements in your symptoms, that makes all the difference.

KCsunshine9 profile image
KCsunshine9

I started T3 seven weeks ago, starting with 5 mcg and increasing another 5 mcg every two weeks (so I am up to 15 mcg now, then 20 mcg in another week). I've noticed my legs don't feel AS heavy (but still heavy) and the brain fog seems to have decreased a bit. I also seem to have a bit more initiative to get dressed and go out on a bike ride a couple of times a week, whereas before I would just look sadly out the window at the nice day I was missing.

I have read in here of people taking 60-160 mcg a day, and I'm thinking, "geez, is THAT how much I am going to have to take to feel better?" That's going to take FOREVER to get to at a 5 mcg dose increase every two weeks! But I want to do it right, and not force it.

Background: My thyroid levels are in the low normal range, which made my symptoms so confusing and the traditional doctors blow it off. I finally went to a naturalpath doctor who ordered a complete panel including a reverse T3 (which was over 25!). That was the clue to point me in the right direction. I am very optimistic.

ReneeC76 profile image
ReneeC76 in reply to KCsunshine9

That's excellent you were able to find a naturopath dr. Sometimes they are the ones to save our lives! My wellness doctor is who helped me the most. He would be considered functional medicine or naturopath. Sometimes those doctors who don't write prescriptions are the ones who know what's best for us. I was like you and thought the same thing about the dosage, am I going to have to increase little by little clear up to a hundred plus micrograms per day before I feel better? There were so many people on such high dosages and said they didn't feel good until they hit that. Well I did start out on a high dose but it just made my body break through the reverse T3, and then all my body would tolerate was about 10 micrograms per day. But I feel fantastic so I guess I shouldn't worry! Everything is going well, I have lost the weight I had gained last year and my liver is functioning well and just trying to be positive, like you. Best of luck to you, thank you so much for your response.

Grooveshark49 profile image
Grooveshark49 in reply to ReneeC76

hi there. ive been on t3 only for a few years. started on 50mcg then needed 75mcg to get me out of hypothyroidism. i have hashimoto's. im thinking i need to go down on my dosage. how did you lower your dosege? slowly? by 5mcg? a few weeks? my thyroid dr & naturapath who were treating me both have retired. im about to go shopping for a t3 only dr from Wilson's protocol website. i've had awesome luck titrating from 70-75mcg but since i began keto lifestyle i have recently found i may need to go down in my T3 only. i also wonder if i need to add back T4. was on t3 & t4 only compound for years before t3 only but t3 only was the only thing to get me out of hypothyroidism. thanks so much !!

ReneeC76 profile image
ReneeC76 in reply to Grooveshark49

Hi there, thanks for your reply. I actually went from 75 mcg down to 10 in one day. I was on T4 only for about a year and it wrecked me. I was severely hypothyroid, had massive reverse T3 and high antibodies. Doctors had no clue what was wrong with me and I deteriorated to the point I was convinced I would die. Finally got a doc who agreed to give me T3 only and I was on 50 mcg per day right away. Went up to 75 within a week. Im on a very strict anti inflammatory/keto similar diet as well and did a liver cleanse to eliminate any methylation issues. After a few weeks on 75 mcg per day I woke up hyperthyroid. Blood pressure was out of control, I felt bad. I knew I was over medicated. So I skipped my T3 all day until evening and took 5 mcg. Next day, I took 5 mcg morning, 5 in the evening. I've felt fantastic since. My body had a break through that day, finally started utilizing the T3 properly. I believe the liver support and diet contribute to my low dosage. I'm getting the proper nutrients from diet, exercising, have a healthy liver again. So less T3 is needed. If you are doing keto, its very possible you may need less T3. Do you take your 75 mcg all in one dose or break it up throughout the day? Either way, I wouldn't be afraid to cut back 10 mcg and see how you feel. I think it's much easier to cut back than it is to increase. You can continue to cut back some each day and see how things go. If you begin to feel hypo, just increase a bit again.

Grooveshark49 profile image
Grooveshark49 in reply to ReneeC76

thanks so much for replying back ! i have been taking 75mcg all at once upon waking same time everyday. wow your story sounds VERY similar to mine. though what do you do for liver support? i also did a cleanse & am on a gentle cleanse everyday. how do you know if you're absorbing everything like we should be? im pretty sure im getting great nutrition on keto lifestyle only been on it for about 3 weeks. my liver #'s are perfect & my thyroid #'s are good too except my tpo. im so glad you're doing so well. :) i dropped to 65mcg today & im feeling very tired/sleepy later in the afternoon but taking 75mcg is making me feel hyperthyroidism. my resting heart rate on t3 only is awful at 90-117. i don't know what to do. whenever i lower my dose i get really sleepy later in the afternoon but 75mcg is now making me feel hyperthyroid. both my awesome Drs have retired so im not sure what to do or where to go. my endocrinologist i used back when i was 1st diagnosed he put me on armour and i felt good then awful hence what led me to t3/t4 compound then to t3 only. thanks again !! :)

ReneeC76 profile image
ReneeC76 in reply to Grooveshark49

I used dandelion root and artichoke extract for my liver. That's what my functional medicine doctor recommends for all his patients and it's also what I recommend as a nutritionist. He's been working on the most effective liver cleanse for thyroid patients for a long time, I'm going to say maybe about 12 years? He said the dandelion root and artichoke extract are the most effective from his experience for people with Hashimoto's and Graves disease, much more than other supplements he has had patients try in the past. He also recommended reishi mushroom supplements to me for the first three months but does not recommend staying on reishi long-term. He also recommended to me to cut the dose of the dandelion and artichoke back after 3 months and to plan to eventually eliminate it from my diet plan altogether, assuming everything goes as planned with diet and so on. How I will approach liver cleanses in the future probably will just be determined by how I feel, how my blood lab numbers are as far as Vitamin levels and so on when he retests me in the future.

My functional medicine doctor basically tells me that although blood labs are important, how you feel and how you function is of utmost importance. He also believes wholeheartedly that getting the appropriate nutrients from our diet can solve so many issues.

When we have Hashimoto's or Graves disease we can typically be sure we have a sluggish liver and are not metabolizing vitamins/nutrients properly. You can take as much iron, vitamin D, Etc as you want but it doesn't mean your body is utilizing it properly. You can even have high levels of both in your blood but it doesn't mean that your body is utilizing it.

Basically by cleansing and supporting your liver, you will ensure that your body is metabolizing all of the nutrients you take in.

It sounds like you are eating very, very well, very healthy and are probably getting the majority of the nutrients you need from your diet. If that's the case, I think you would be able to guess that after three to six months of this, your liver will start working optimally. My functional medicine doctor does still recommends a vitamin D supplement along with a liposomal vitamin C regardless of how well our livers are doing. Those of us not living in tropical regions definitely need the vit D. He recommends various other supplements too, such as a good magnesium because that's something else we typically don't get enough of no matter how well we eat.

I'm sorry to hear that you have some hyperthyroid symptoms on the 75 mcg. And that you are sluggish when you reduce your dose. I know how you feel, it's so uncomfortable to have your heart rate that high, not to mention the anxiety you feel over it.

The only thing I can really say about your dosage is from my own experience, just spend some time over the next few weeks tweaking it in various ways. Try breaking it up and taking it several times a day. If that doesn't seem to alleviate your symptoms, definitely back the dosage off a little but even 2 to 3 micrograms less could have a huge impact on how you feel and solve your issues.

I've taken my T3 three times a day, four times a day, five times a day, and twice a day. It took me several days of each to figure out exactly which one works best for me. I know it's a pain to go through messing with your dosage but it's definitely worth it in the long run because once you get your perfect routine, you will be amazed at how you feel.

I know my reply iss long and I hope I'm not boring you! But one more thing, I noticed that on T3 only sometimes I will mistake hypo symptoms for hyper, and vice versa. It's very easy to do on this medication and I found that many others I've talked to have gone through this as well. Some days I would swear that I was hypo but it turns out I was taking too much T3 and my symptoms were side effects of the liothyronine.

What a pain this can be! But I guess this is the way it is for us so all we can do is figure out what makes us feel the best. I wish you luck and feel free to message me any time!

Myro profile image
Myro

How much was low dose of levo? On start or lather?

Kailey99 profile image
Kailey99

I was put on t3 only, now Doctor suddenly changed his mind and I might try nature throid. I'm trying to keep up with the t3 liothyronine generic but it makes me irritated, very tired, I get stabbing sensations in my eye and then wake up with a headache. On cytomel I feel happier but also extremly sleepy and no energy, the only thing is I can really tell the difference that my brain is more alert for the first time in years so I don't want to give up yet but this is from just 5 mcg a day so I don't think t3 only is for me.

ReneeC76 profile image
ReneeC76 in reply to Kailey99

How long have you been on the T3? It does seem to take some time for many. Especially going from T4 only. Takes about 4 to 6 weeks for the T4 to be out of our systems, bodies finally running out of T4 to convert to reverse T3. Your dose is low yet but if you keep on and don't find relief, it would seem you're right that T3 only might not be for you.

I found that if I'm consistent with my diet, exercise, supplements, the T3 works wonders. And it took about a month on the T3 only to feel great. It sounds like you might have some reaction To the additives in the generic, possibly? Whatever is going on, I hope it settles for you and you find what's optimal for you.

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