Hi all, I'm from Germany and here it's not yet very common to take T3 only.
After suffering from Hashiomto since approx. 4 years, I now found a doc who really believes in my symptoms and thinks my body is not able to transfer T4 to T3. That's why he wants me to take T3 only. Still I'm a little bit worried as I cannot find anybody here who's only taking T3 and who is not having problems with it. They all say you still need the T4 and will suffer from different problems taking T3 only.
Now it seems that in UK and USA many people DO only take T3. That's why I registered here. I wanted to learn if indeed many of you take it only and how you are feeling with it, i.e. if you're having other problems with it or need to be very careful in certain point of views.
I'd really appreciate you're answers!!
Thank you very much
Christine
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Novacella71006
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I take T3 alone and feel normal (well maybe not 100% at times but very good all the same).
I have taken levothyroxine, T4/T3, and quite a few natural dessicated thyroid hormones. The one I liked best was Naturethoid but GP wouldn't prescribe but did for T3.
This is a link re T3. If your doctor takes account of how you are feeling rather than the blood tests (which should be used for guidence only) you should do fine. As you are not taking T4, your T4 will be low, T3 high and TSH low. If it is suppressed it is still o.k. if you go by how you feel. Take your temperature and pulse regularly.
You can always give your GP a copy of the link for his information. Dr Lowe died two years ago.
I take my dose once per day as Dr L advised. I also take supplements.
Also in this link there are lots of topics at the top of the page and if you click on Proper Use of Thyroid Hormone for info. As these links are archived some links within them may not work.
Shaws, how much T3 are you taking? I was recently advised by endo to split the 40mcg T3 I take with 100mcg T4 into 2 doses. I have to admit I prefer one dose.
I take 30mcg per day in one dose. As you know if you take your meds in one dose it frees you from carting meds around, alarms etc. forgetting etc.
I have had higher doses but have now fine-tuned it. I think supplements helped. Excerpt from Dr Lowe:-
And finally, why do I specify that the typical patient use one full dose of non-timed-release Cytomel for life? Because extensive testing has shown that this is safe, effective, and most economical—when used within the context of our entire protocol.
Another excerpt:
The endocrinology specialty first promotes the belief that only a steady blood level of T3 is normal and healthy; it follows through with a second, corollary belief: that is, if the T3 blood level peaks briefly, as after taking Armour, the patient is in peril. He’ll probably have troubling heart palpitations, but worse, he may drop dead from a heart attack. The way around these potential problems, says the specialty, is to use T4 alone, as in Synthroid.
and
Dr. Lowe: As a rule, our patients take thyroid hormone only once per day. An advantage of this one-per-day schedule is that it’s easier to find a window for good intestinal absorption—when the stomach or small intestine doesn’t contain food.
Thanks, Shaws. Irritating how advice differs isn't it. It was reading Dr. Lowe's advice that prompted me to take all my meds in one dose originally.
Endo didn't suggest split dosing when I was prescribed 20mcg. 'Twas only after I raised to 40mcg. Probably thought I'd chop a finger off if I tried to cut a 20mcg pill.
Thank you for your answer and the link! I'll have a go and read through it as soon as my children are in bed
I'm really happy to find some people only taking T3 and being happy with it.
Meanwhile I received an e-mail from my new doctor pointing out my thyriod would still produce a little T4 by itself, so there won't be a lack of it in any case.
Your new doctor sounds very good and he is right. T4 is inactive and as Dr Lowe says it just like having an unopened can of beans.. it's not until it is opened that you can enjoy the product. i.e. T4 is inactive and T3 the active.
If you are on T/4 T3 combo can you replace the Levo with NDT or does that not make sense ?Is NDT something to be purely used on it's own?
I am still questioning fillers in the levo causing joint pain.Of course,The T3 also has fillers too but I imagined that being so expensive it was going to be a superior product. maybe NDT is still the answer,though Armour now has been changed too from what we read.I am still a bit confused as to what is best to do......must write down a lot to ask my Endo.
Hi Shaws. I am considering taking T3 once per day as per Dr Lowe's protocol. I have posted here a few times....in short, a year ago I developed severe hypo symptoms, the most annoying being myxedema of the face and torso. All thyroid labs are within range. I originally started sustained release T3 at 15 mcg per day then Cytomel, added 2 grains NDT and am now on compounded T3 45 mcg three times per day. I have seen no shift in symptoms....have extreme pain and facial puffiness. Yesterday I took two pills (90mcg) at once and then another 45 mcg....no hyperstimulation. I am considering taking a higher dose all at once. I am convinced there is a resistance issue. Can I ask you your experience ie: why you decided to use Dr Lowe;s protocol and what dose you were on before seeing any changes. I realize that everyone is different but I dont know how far off I may be from a dose that will begin to shift this dreaded swelling. I also read somewhere that T3 does nothing for myxedema and that NDT works but I am worried about the T4 converting to RT3. Any advice would be appreciated.
I have only just read your question as you didn't press the Yellow Reply button on my answer and therefore wasn't alerted a
response was needed.
I am not medically qualified but as Dr Lowe was an Adviser to Thyroiduk.org before his death and that he first of all recovered his own health as a teenager by studying hormones which then enabled him to lead successful life and reading his website which made a lot of sense. This is a link and he wasn't afraid to go against the current thinking about treating thyroid gland dysfunctions.
For me it was trial and error, first levo - felt more unwell than before diagnosis. T3 was added - an improvement. I then tried several NDT's and then T3 alone and feel fine now, thankfully. It's trying to find an optimum dose.
Hi Shaws, just found an old post Re T3 only medication. I have just started reading Recovering with T3 and as my story is very similar to the writers am thinking T3 only may be the best option. The NHS endo I am under seemed to want me to take a proportionate Levo to T3. I have been on a reduced amount of Levo 50mcg and 6.24mcg tiromel. I'm feeling like I can't take a breath, v weird. Bad headaches daily, hot, constipation and anxiety. My body seems to be rejecting Levo after 21 years of 100mcg alone. My dose of Tiromel seems tiny compared to your dose, clusters and the writer of the book. Any suggestions would be much appreciated.
First, I think you're not feeling well due to your very low dose of thyroid hormones, T4/T3.
Second, you may have been on an adequate dose of levo previously, or the one you've been taking has filllers/binders changed. Something has caused you not to feel well after 21 years (by the way were you taking Eltroxin previously?). Many have complained that they've become unwell when they were given an alternative to Eltroxin.
Your Endo isn't up-to-date with the latest T4/T3 combination which is one T3 to three T4 (or equivalent) per dose. (i.e. 20mcg of T3 should go along with 60 T4) because we cannot cut up tablet the nearest would be 50mcg of T4 to 20mcg of T3, so you see how low your T3 is.
The low dose that nowadays Endos prescribe is apt to make the patient feel more unwell and also can cause 'other' health problems - first, I think is the the most - heart.
If you have your latest blood test results with the ranges, post them on a new question for others' comments. As I am not at home at present I may not be able to answer your questions promptly.
Your Endo should be aiming for a low, very, low or suppressed TSH as indicated by Dr Toft who was President of the British Thyroid Association. If you've not got a copy email louise.warvill@thyroiduk.org and ask for the Pulse online article by him and highlight question 6.
This is the up-to-date info re dosing. Go to Page 80 and highlight the para re dosing i.e. including the 1 T3 to 3 T4. for your Endo as well as the pulse online article. (Ignore Dr T's comment re our state of health if the hormones don't work - ignorance is bliss so the say and it would seem to me that the treatment of patients with hypothyroidism is woeful. They are not interested in making the patient well, only interested in getting the TSH in range.
If you get the correct dose of T4/T3 and take sufficient to make you feel well, your GP or Endo should co-operate. If not, you will have to go it alone like many of us.
I follow Dr Lowe's and take one daily dose of T3 and am well. I did have to change the T3 as I began to feel unwell and didn't realise there was some change in the fillers etc.
Thank you so much for your reply. I seem to get better advice from here than I do doctors! I was on Levothyroxine aline for 21 years. Never felt well, main issues were anxiety and panic attacks, but also had Ibs, acid Reflux, headaches - a lot of the thyroid symptoms list. I have Hashimotos, but it was never explained to me. Only recently found out what it all actually means. I am on activis brand Levo.
I started to put on weight a couple of years ago, found I couldn't tolerate alcohol (gave it up), then bread and dairy, give me stomach cramps, headaches etc. Tongue problems, eye problems. Went to gp and said I thought the levo was just sloshing around my system and not converting to T3. She just said my ranges were OK and tried to up or change the antidepressants I'm on! Read Dr P's book and stopped Levo for a week. Went to see Dr P. He hasn't really done much tbh. Since he can't prescribe it seems he only recommends Nutri Adrenal and Nutri Thyroid, and pretty much let's you sort yourself out! I got Tiromel mysef and started on 6.24mcg. Nhs endo changed me to 5mcg of liothyronine. This made me I'll, so switched back to tiromel. I had bloods done last week before telephone app with endo nurse tomorrow. I will post results on here. So fed up with having to try to do this without the professional guidance. It's far too much to ask of people to try to become experts when they feel so ill, brain fogged etc. I've been in nhs prescribed zopiclone for 6 years and I need to get off it, I'm so addicted. If I can get the thyroid meds right the anxiety, tired but wired should go. X
If zopiclone is an anti-depressant, don't stop cold-turkey as it might make you very ill. Ask advice of pharmacist/gp. I believe you might have to taper off slowly.
Regarding 'acid reflux' that's most probably due to being underdosed, i.e. with hypo (which means 'slow)) our systm is very slow and many get constipation etc and reduced stomach acid. GPs are apt to give us acid suppressant meds which might be very wrong as we need acid in our stomach to digest the food we take. We have the option of taking an Apple Cider Vinegar (I would tin water or juice before/after each meal. We can also take Betaine with Pepsin. Again I think you have to reduce any meds for 'acid reflux' gradually so check with the pharmacist.
(apple cider vinegar and this is an excerpt from STTM:
Preferable brands of ACV are unfiltered, unheated, and unpasteurized (Braggs is one, but there are others).
We have to read and learn if we want to get back to a semblance of good health but we do need a sympathetic doctor or else we have to go-it-alone sometimes.
We cannot believe that doctors' training nowadays is so lacking in thyroid gland dysfunctions and no account of clinical symptoms are considered but we are given prescripts for the symptoms rather than thyroid hormones in a dose which relieves them.
Hi. Have you read "Recovering with T3" by Paul Robinson and registered with his Facebook group. Both will provide more information.
If you are concerned about the absence of T4 could you take both, as I do, with the emphasis on T3?
No, I did not yet read this book. Thanks for that info. I'll go and check on that too.
And yes, I think I could go with T4 and T3. Just need to sort out with my new doctor and the "regular" one...
Don't know how this is handled in the UK, but here one usually has a family doctor to whom you go with EVERY problem. if he cannt help he sends you to the specialist. I'm going to the nuclear medicine for checking blood and then the family doctor is giving me my T4 dose. I think I'll have to convince HIM to also give me T3 or convince the new doc to also give me T4... OR go to the new one with all my problems from now on. .But he's quite some miles away...
It is very similar to here - we have a General Practitioner (GP) who will refer on to a Consultant. Bloods will be monitored by the GP, but also by the Consultant if one is involved. It seems that many GPs (or the laboratories) won't test for T3 unless pushed to do so, thinking that TSH and T4 are the only results that matter. I take 125mcg T4 and 20mcg T3, all together at bedtime but I can't say it is optimal. I think it was better taking them in the morning but I swapped as I was concerned they might be affected by my anti-hypertensives. I intend to replace with NDT later this month.
yeah, that's what I found out today too. I was just about to get ALL my blood tests from over the last approx. 15 years and it seems that my GP (where I lived before) only tested T4 and TSH. And so he still does with my mother. I think she's having Hashimoto too, but she does not know as the GP is not really checking on it. As she's not having problems that's okay so far...
There are quite a few members who are on T3 monotherapy due to conversion problems or because they are unable to tolerate the generic Levothyroxine prescribed. It can be difficult to get UK doctors to agree to prescribe so many will be self medicating with T3 bought on the net.
T3 is usually split into 2 or 3 daily doses because of its short half life and you may feel a dose 'wearing off' after a few hours indicating the next dose is due.
Taking T3 means the FT4 to FT3 conversion can be bypassed so you may find your TSH and FT4 levels drop but your FT3, the active hormone, will improve. If you don't feel well on T3 only there is no reason why you can't ask your endocrinologist to prescribe a small dose of T4 in combination. I personally prefer T4+T3 combination, currently prescribed 100mcg T4 + 40mcg T3.
Thank you for your answer! I'm also taking 100µg T4 at the moment and since two days 20µg T3. First day I took it at once by this was giving me some problems with my head... So I split it up yesterday and today. Seems this works better.
I read and heard one should take it 30min before eating and if possible on an empty stomach (I hope that's correct to say). So how do you do this if you split into 3??
Novacella, yes T3 should be taken at least 30 minutes before food and drink. It's usually sufficient to split 20mcg into two doses but if you need 3 doses then you will need to schedule dosing and meals carefully.
I found improvement in brain fog and cognitive issues with a couple of days of taking 20mcg T3 and resolution of most symptoms within 3 weeks. I hope it works as well for you.
I hope you don't mind me asking clutter but do you have a thyroid? only I was on 75mcg T4 and 25 mcg T3 and went hyper on that, as your dose is much higher I would, I think explode on that!
unless my test results were from the long active life of T4 I was on 5 weeks previous to my test, which was 125mcg levo,
Susie, I don't have a thyroid which probably does make a difference. I've actually reduced my T4 to 75mcg for a week and skipped a couple of T3 doses as I felt a tad overmedicated. I may be 'replete' or it may be the hot weather but I don't want to go hyper so I'm tweaking as I feel necessary.
Hi Clutter, I've had to reduce too, also suspect hot weather. I've reduced T3, but note you've reduced T4 and skipped a few T3 doses. Can you tell me, is this based on your instinct, or experience? I feel a bit lost as I'm still not right, wonder if I should also reduce T4?
Guesswork, Aurealis. I was reluctant to reduce T3 so thought skipping a dose here and there when I wasn't active wouldn't be too drastic.
I am noticing carpal tunnel symptoms of tingling and numbness creeping back in my left arm and hand though so may try 75/100mcg T4 alternate days if it gets any worse. I really don't want to start messing with T3 dose other than skipping the occasional dose if it seems right.
I am T3 only and could not convertT4. I am now well again. I take 20mcg at 6.45am, 20mcg 11.45am and 10mcg 4.45pm. If I am late by 30 mins I just about get away with it but an hour late creates a big dip which sometimes does not clear until the next day. Normally our body systems self adjust according to need but our thyroid can no longer do that for us. Keeping our T3 consistent seems to help the rest of the body cycles adjust. That's my experience for what it's worth! I could only manage a 500m walk on T4. On T3 I climbed Skiddaw (3,000ft) a few weeks ago.
T3SM, How long did it take you to feel well enough to do Skidaw after starting T3. I'm feeling well since Feb, but still only manage a shuffle walk as I have no stamina and become out of breath.
Its 18 months since I went on to T3. I have continued to improve over time with occasional lapses where I need a sleep afte lunch or am low for a week or two. Sometimes a virus eg a cold, sometimes stress, sometimes I can't account for it. I am very disciplined with timing and dose which has been an important part of improving for me. Last year I walked round lakes and gentle hills but this year I could do a lot more. I guess we have to rebuilt out stamina after so long being exhausted and able to do so little.
just started t3 only and doing ok although no idea how much to take so far 20mcg 5 times a day from 7am every 3 hours, but dont think its enough just went over by nearly an hour and had a total crash in work had to lie down not had that before on armour/t3 but was on a high does 4 x 300mcg and 150 mcg thyroid gold plus 20 mcg t3 - i was thinking of increasing to 40mcg at 7am 30mcg at 11am and 3pm and another 30 later or before bed? any advise would be great
yes, I already heard that it's important to be very exact with timing in taking the different doses. but nevertheless it's good to hear about such a great experience with T3.
Hi. I take t3 only and feel so much better. I split my dose but I don't find I need to be exact with timing my doses any more. For example, I forgot to take my lunchtime dose (busy day today) so took it about half an hour ago. I usually take 50mcg first thing in the morning, 25mcg at lunchtime and 25mcg at night.
Even a small amount of t4 seems to cause me problems at the moment.
Definitely. Each of us is different so it's important to find what works for you. I'm hoping, as I continue to improve, that I will be able to eventually take it all in one dose ☺
I was happily taking 40mcg T3 with levo until a month ago when endo suggested twice daily would be better. I'm not convinced and may resume single dosing.
I take T3 only as well. I'm on 87.5mcg. I've been taking it in 3 doses spaced throughout the day but have recently tried two doses and that seems to be working fine. Taking a larger dose in the morning works well for me, then less for the second dose.
I'm currently trying to lose weight, which will lower my medication a bit. I don't have any problems with T3 only. It does take a while to sort out the best timing and dosing that's best for you though. I'm still fine tuning mine!
Thank you! I'm really happy about all these answers. As I said it's not common in Germany to take T3 only and everybody is afraid, but as so many do take it here without problems I don't really understand why!!!
I'm also trying to lose weight (gained approx. 15kg during two pregnancies) and already lost 6kg. At the moment I'm trying to keep this but in a few weeks will go on much more strictly.
I already wondered what this will do to my T4/T3 dose, but now I see I might be able to reduce
Hi Totoro, I too am experimenting with my T3 dosing.....I take 45 mcg compounded three times per day and have not noticed any differences for better or worse. I was able to tolerate 90 mcg yesterday all as one dose and am considering using Dr Lowes protocol of once per day. My labs are all normal. I am wondering how you decided to use T3 only and what your experience was....how long it took to feel better.
really a shame that so many doctors do not know what they are doing. seems we have to become doctors ourselves so that we do no longer need their help...
I am T3 only as I couldn't tolerate T4 at all. Not even in NDT. I have lost 1 1/2 stone in weight and can do more including going for walks, which I couldn't do before. I still don't feel 100% but am certainly better than I have been.
Doctors and pharmacists imply it's unusual for me too.
I have a long story, where I changed specialist, changed GP. I tried different doses and combinations of T4 alone, T4&T3, then T3 only.
Rather than problems it was what my consultant and I decided to settle with, as I was functioning better, and feeling better than before. All this took time, and really tried my patience at times.
That's the million dollar question! Basically 60mcg is the upper BNF limit so 80 or in your case 100 is over that and causes controversy. You'll be amazed I got this far with getting 80mcg prescribed by the GP. This was as far as I could get with this private specialist. Clearly they worry about things. He thinks 60 or above works well and I had spent ages experimenting with different dose combinations of levothyroxine with liothyroninine then liothyronine alone. All this had taken ages and I have had a 5 year saga in total having changed GP and changed specialist before. So more than 100% peace of mind I figured it was as far as I was going to get and I have been on this for ages now.
My Endo with whom I started 11 weeks ago has raised my T3 to 40 Mcg on my second visit 3 weeks ago. He is heading his dept. At a famous London hospital and told me he would not take me above 50 Mcg T3 as it was dangerous It is so difficult to know what to believe
Yes it is difficult. My argument has always been: hypothetical dangers in the future which may or may not happen... versus the inevitability of struggling on really really ill... being half way through my life not expecting to be near the end of life, that's many years ahead of being ill and struggling, when just trying to help myself be as well as I can.
If this is within an NHS hospital then it is an achievement to get so far as I only got 20mcg.
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