So here's the situation I am in and I need some clarity. My Functional Medicine doctor (several years ago) told me to take 5ug of T3, even though all my levels looked ok. But it did give me more energy and I felt better on it as I have loads of hormonal problems (early menopause etc).
Over the years I have upped this and with an attempt to stop feeling so cold and hypothyroid and I had got to 37.5ug recently (my doctor retired so have been doing this on my own) However my NHS doctor sees that my TSH and T4 had tanked and told me to go on thyroid replacement - so I tried T4 - A total disaster - felt terrible on it. I now see that I have those two genetic mutations that mean you can't convert T4 to T3 very easily. Then I have suddenly had a reoccurrence of my ulcerative colitis and can't seem to digest anything! My gut is a total mess and my heart beats heavily. Have I over medicated on the T3?
Here are my levels over the last year from when things went wrong...
Lab ranges for TSH (0.57 - 3.6) T4 (7.9-14) T3 (3.1-6.8) NHS ranges
Jan 2021
TSH 3.6 T4 6.3 FT3 3.8 (are these levels ok?) I was taking T3 18.75ug
Upped T3 to 25ug - May 2021
TSH 0.617 T4 6.1 FT3 4.8
Played around with T4 and couldn't tolerate it so tried upping T3 to 37.5ug
Nov 2021
TSH 0.015 T4 5 FT3 5.3
I feel just as cold and get very tired by the end of the day but most importantly I need to be able to eat without bleeding and being unable to digest food and I need the heart to stop thumping and get some sound sleep! I am rather assuming this is partly the result of me playing around with T3 to try and feel a bit better - although over the summer I did eat things I shouldn't.
I also have Lyme which doesn't help
So what do you think - Have I over medicated or am I still under medicated?! i don't know and am not sure what to try next without aggravating an already inflamed and autoimmune body. (I have no Thyroid antibodies so assume I don't have hashimotos)
Thank you for any suggestions or thoughts
Written by
Tuxi1
To view profiles and participate in discussions please or .
If on too much T3, you can just lower it and wait for a few days. T3 has a half-life of ca 3 days on cellular level so, after that, you should start feeling better if too much T3 was your problem.I did not fully understand how long your original doctor kept you on 5 mcg of T3 daily? That is a tiny dose for someone on T3 only, far from a full replacement dose. How long before you worked your way up to 37.5 mcg daily? And, why did he put you on T3 only to begin with, rather than T3+T4? What was your original diagnosis?
It is also possible, of course, that you need some T4 along with T3. Not everyone does well on T4 only or T3 only.
You say that a functional doctor put you on T3, and later an NHS doctor put you on "thyroid hormone replacement". Both levo and liothyronine (T3) are thyroid hormone replacement. So do you mean you took a thyroid glandular to begin with, which does not count as thyroid hormone replacement, or actual T3 (Tertroxin, Cytomel, Cynomel etc)?
Hi - Thanks for the reply. I have edited post to include the standard NHS ranges.
I can't see that my TSH has ever been above my T3?
Yes - I could try going down and see what happens - It's just I am so hyper reactive and don't want to upset the body any further. I will try it though.T4 was horrible - felt really bad on it
I was on T3 at that dose for about 6 years then gradually upped it over the next two until now and it is Unipharm T3 which I got in Turkey. I have never taken natural thyroid as don't know how to get it and that is T3 and T4 isn't it so not sure about the T4!
The FM doctor thought a small amount would help but I had to have more than he said to feel a bit better
I had an early menopause at 28 so I expect my adrenals are shot too!
I mean that your TSH was 3.6 in Jan 2021 which is pretty high for someone on T3. Especially people on optimal doses of T3 tend to have a suppressed TSH (below 0.1). When on levo only, it´s usually recommended to try to get the TSH to around 1 or even lower. So, a TSH of 3.6 is too high for someone on optimal thyroid hormone replacement. As soon as you start taking thyroid hormone replacement, your pituitary gland will downregulate its TSH production which results in ever lower hormone production from your own thyroid gland. So, you cannot take a tiny dose of thyroid hormone to top up your own hormone production, you need to replace it. I am surprised a functional doctor would prescribe 5 mcg daily and leave you on that. Is that a real MD or a natural/homeopathic doctor? Because, quite frankly, he does not seem what he is doing. If you have full-blown hypothyroidism, you need a full replacement dose of thyroid hormone, be it levo, T3, or any combination thereof. A healthy thyroid gland produces approx 100 mcg of T4 and 10 mcg of T3 daily. Many people on thyroid hormone replacement need more than that, though, due to digestive issues, conversion problems, and low nutrients, so it´s only a rough guideline, not a rule set in stone. However, I have never heard of anyone doing fine on 5 mcg of T3 only in the long run.
I don´t know if there is a link between early menopause and adrenal glands. You should not assume you have adrenal fatigue and self-treat without proper testing.
I am a bit confused as you say you are now on Unipharma/Tiromel which is T3, but you also said an NHS doctor put you on levo...are you on both right now, or T3 only?
Hi - thanks - I see what you mean! But what about the other two months where the TSH was much lower but is the T4 now too low or is it ok there? Is that why there may be gut issues?I don't think i am treating adrenal fatigue esp. When last tested I had hardly any DHEA, progesterone or estrogen
I am not on levo. - felt terrible on it. only on litho.
My FM doc was very good but sadly retired several years ago so I have been on my own (wouldn't trust anyone else - I am too complicated and he was high up in genetics so understood my body at the time)
Sorry if i am confusing - I am trying to make sense of things and it all just seems so difficult at the moment.
"I have edited post to include the standard NHS ranges."There are no 'standard ranges' that apply across all NHS labs for thyroid results . each lab has it's own test machine or 'platform' ........ and if they use a different machine it will have a different range. (there are also small 'local population adjustments' that are sometimes applied to the machines factory setting by the labs).
The only way to compare and interpret thyroid blood results for fT4 and fT3 levels is to use the range that was given with that particular blood result.
Note .... this applies less to TSH results ,because the various different TSH ranges used have become closer to each other in recent years ...but fT4 in particular can have ranges as different as [7.9-14] to [12-22] .. so you really need to know the range for the test machine used, . without it you can't tell whether a result of eg . '14' is high or low
Ok, but I would say that is still an exception to the rule. Most people I know of on T3 only take much higher doses than that. There will always be some odd people who do well on something most of us don´t, but that doesn´t make them the rule, just the exception. Without any thyroid, all the T3 in your system has to come from either converted T4 or T3 directly. The body´s average need for T3 is said to be ca 50 mcg per 24h (but certainly more than 10 mcg). Also, another factor you have to take into account is that thyroid hormone taken orally is not absorbed 100%. T3 is said to be better absorbed than T4 (ca 90% if taken on an empty stomach at least 30 mins before eating), but still you would not be absorption all of the 10 mcg...which would make your coworker a metabolic wonder as she would have no T4 to convert to T3, yet do fine on as little as less than 10 mcg of T3 daily...I wish I could explain the mechanisms behind it, but I maintain it´s not normal and should not be used as an example to others in the same situation.
T3 is the 'active thyroid hormone. It is needed in all of our T3 receptor cells and the brain and heart contain the most.
25mcg of T3 is approx equal to 100mcg of levothyroxine in its effect.
T4 being inactive has to convert to T3.
I also take a small dose of T3. As it is the 'active thyroid hormone' it enables my body to feel 'normal' with no clinical symptoms. I used to take a higher dose but reduced dose according to 'how I feel'..
25mcg of liothyronine (T3) is approx equal to 100mcg of levothyroxine in 'its action'.
Some people have 'Thyroid Hormone Resistance' and need higher doses than would be 'normal'.
Dr John Lowe (deceased) was an Adviser to Thyroiduk.org before his accidental death. He was an expert in the use of T3 and he took it himself (in the mkddle of the night
The FM doctor thought a small amount would help but I had to have more than he said to feel a bit better
Your Doctor is either ignorant or misguided
No thyroid hormones work like that
As soon as we start taking levothyroxine, and especially start on T3, your own thyroid output significantly reduces or stops
Levothyroxine or T3 does NOT top up failing thyroid…..it replaces it
TSH reduces as soon as we start levothyroxine, or especially T3
TSH reduces far more dramatically to almost any dose of T3 compared to levothyroxine
Once on T3 TSH will drop very low, and turns your own thyroid output off almost completely
TSH is slow to respond to any dose change
So all dose changes must be small and slow
It takes 6-8 weeks for any dose change to have full effect
Suggest you settle on a fixed dose and stick on it minimum 6-8 weeks and then retest
On T3 many, many people find it better to split the T3 into 2 or 3 smaller doses at 12 hour or 8 hour intervals
ESSENTIAL to regularly retest vitamin D, folate, ferritin and B12
What vitamin supplements are you currently taking
When were vitamin levels last tested
Gut issues are extremely common when under medicated, leads to low stomach acid, poor nutrient absorption and low vitamin levels as direct result
Have you had thyroid antibodies tested?
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 and last dose levothyroxine 24 hours before test
On T3 or NDT - ALWAYS day before test split daily dose into 3 smaller doses, spread through the day at approx 8 hour intervals, taking last dose 8-12 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
Hi - thank you for all the great info. Looking at my results, which month looks better on paper? Is the T4 ok to be that low?All main vits were tested and are fine . I have been on all doses 6-8 weeks - that was my experiment - upping it gradually but have hit a road block with stomach issues and heart.
Would you mind clarifying your two statements below. They appear contradictory or are there differences in what you’re saying? I have a habit lately of missing subtle differences, which could well be the case here and in which case, my apologies
Thanks
TSH reduces as soon as we start levothyroxine, or especially T3
If starting Levothyroxine TSH will drop steadily over 6-8 weeks….that’s why we always wait that long to test
TSH tends to drop more rapidly when T3 is added
But if you were on levothyroxine and T3 combo and reduced or stopped T3 and replaced with higher dose levothyroxine, TSH wouldn’t (usually) jump back up for many weeks
Often on almost any dose of T3, TSH remains suppressed…..so if you’re not taking high enough dose levothyroxine/T3 that can be a problem…..your own thyroid output is switched off because TSH is suppressed
Hey 👋 oh poor you 😞 You have a lot going on,but too much T3 is not your problem. And with your history I’d continue to steer clear of Levo. Up your T3 again to see if there is any difference.
What treatment are you in for the colitis?
Have you tried changing your diet?
Have you thought about Betteryou range of vitamins/minerals , which are mouth sprays rather than tablets?
Have you looked into calming down the immune system? Testing adrenals too? And treatment for the Lyme disease?
I would say that you probably do have Hashi’s, given the colitis too, not everyone presents with thyriod antibodies. But regardless, the treament is usually the same, so it makes no difference either way.
Thanks for the sympathy! I take lots of high quality supplements - vits and minerals, liquids, oils - and various herbs to treat lyme. I am doing my best to calm the immune system with this and diet (very limited) I am currently using a steroid foam spray for the colitis - but it's not working and I was on a systemic pill that I didn't much like and also didn't do too much but did give me a bit more energy. I don't think anyone else could do as much as i am atm! Being very strict.I didn't realise that you could have Hashi's and it not show up on tests.
Had one several years ago now and it didn't show anything. Do the NHS recognise that 20% of people with Hashi may never have raised antibodies? or is that another thing I will have to disagree with them on?!
If it has been several years, a lot can have changed in that time. I had an ultrasound at the time of diagnosis (Hashimoto´s) and the thyroid gland was of normal sizie, but 20 years later it was atrophied. I´d say if you have not had a thyroid ultrasound in years it could be worth having it done privately to see if anything has changed in the meantime.
Some people - myself included - are better off without T4. Mine is zero, and it's fine because I just don't appear to need it. Levo makes me very unwell - no specific symptoms, just generally unwell. So, I avoid it. A lot of doctors don't understand that, and want to meddle. But, then, a lot of doctors don't understand anything about thyroid, and are best avoided.
You are not over-medicated according to those results - although difficult to say for sure if you haven't got the correct ranges. Could be that you are actually under-medicated. But, what worries me is your stomach problems. Have these been properly investigated? You sound to be a pretty poor way. And being able to eat properly and digest will go a long way to making you feel better.
As for your adrenals, it's cortisol that you need to check on. It's the all important cortisol that is low with Adrenal Fatigue. So, maybe a 24 hour saliva cortisol would be a good idea.
What supplements are you taking? And, what were your blood test results - and ranges, of course!? And, are you taking them all at the right time? Supplementing is far more complicated that just swallowing a few pills. We have to take into account the way they interact, for one thing.
I might be more extreme when it comes to experimentation, but I would mainly rely on your response to the hormones/medication you are taking, and forget about what the numbers say on a paper. You feel what!s good for you, and based on your testimony on T3 only, I would just return to that. I wish all the best!
Your doctor hasn't a clue about how the thyroid and thyroid hormones work...or how the pituitary hormone TSH works.Some people cannot tolerate levothyroxine...myself included....so it has to go!
BUT, this is the last resort after everything else has failed.
On T3-only TSH will be suppressed due to the high level of the hormone T3 in the blood and FT4 will naturally fall because it is no longer present in any quantity.
High hormones = low TSH
Low hormones = high TSH
37.5mcg T3-only is not a huge dose....if T3-only is really what you need!
Why might you need a large dose of T3?
Because some form of thyroid hormone resistance exists ( it's a complicated issue) which prevents the T3 reaching the nuclei of the cells where it must reach before it becomes active. Any amount of T3 can slosh around in the blood but it will remain inactive until it makes it's way into the cells via T3 receptors... and symptoms will not resolve.
How do we discover this...basically trial and error. We titrate the dose until symptoms resolve.
There is no specific dose....we need what we need.
It will soon become clear if you take too much....your body will tell you!
How?
We overheat,
Heart rate speeds up
We feel palpitations
Hand tremors appear
We can feel hyperactive
And more...
There are no tests to measure how much T3 is reaching the cells( only what is in the blood) so we have to rely on clinical evaluation....signs and symptoms.
You are feeling unwell with various symptoms because ( it seems clear) you have cellular hypothyroidism...you lack T3 at cellular level.
This is not the result of poor conversion or the Dio2 polymorphism ( which I also have/ homozygous) the problem lies further along the " route" as I explained,aimed above.
If you are confident that this is your problem then T3-only is the way forward. T3 must be increased very slowly ( every 6/8 weeks) and in small doses ( 5 or 6.25mcg - a quarter tablet depending on those being either 20 or 25mcg.
It is vital to monitor signs and symptoms to avoid overmedication, if this happens quickly reduce the dose.
Record this in a diary.
No such thing as normalNHS ranges...the ranges vary with the test equipment used and how each is caleibrated.
Using low dose T3 labs help monitor the dose and so long as labs are within range then overmedication is unlikely
However on large doses of T3 lab tests become redundant....and at this point medics begin to warn of heart problems, osteoporosis and more....see following link!
Making assumptions is not helpful....you need facts!
I currently need 81.25mcg T3-only in order to function....it has taken well over 2 years to reach a therapeutic dose so be prepared to be patient. I had possibly a lifetime of low T3 to resolve so progress was particularly slow.
Just a few thoughts that may help you decide on a way forward
Oh wow - that's all really interesting. You are on high T3. Do you take T4 and if not why not? I have tried various brands of Levo but every time I get brain fog, can't sleep, too tired etc. So i will have to assume T3 is the only way forward. BUT at the moment I do have heart thumps all the time and they won't stop. I did a two day fast and this made the heart beat heavy and it's not improved since stopping the fast over a month ago. I wondered if this was too much T3 as I had recently upped it (about 5 weeks before the fast so it was not very close to the start of the thumps!) How do I know if the heart thumps are too much T3 or too little now I am entered an autoimmune crisis?
I know nothing of 2 day fasts in relation to thyroid care though I imagine that would put your body under considerable unnecessary pressure.
Your FT3 labs all remain in range so overmedication is highly unlikely.
I'm not sure where you are coming from when you question an 'autoimmune crisis" because you say, "I have no Thyroid antibodies so assume I don't have hashimotos". Being Hashi free you won't have autoimmune flare ups...unless the source is other than thyroid.
I'm not medically trained so can only refer to my own experiences, and perhaps say what I might do, but I cannot advise
Palpitations can be the result of both under and over medication but if you have been experiencing this for some time I suggest you consult your GP.
Ok - so ulcerative colitis is considered an autoimmune disease and so it early menopause and I learn now that I don't have to have thyroid antibodies to have autoimmune thyroid - In fact I have just heard a talk that tells me that if you have Hashi's then that can lead to all sorts of other autoimmune diseases and i am wondering if that has been the problem since I was very young and it had been undiagnosed and caused these other things to happen in the time being. What i am sure that I have atm is an autoimmune flare up as the ulcers are back - bowel and stomach and they had gone. I don't even get Covid (even when my husband has had it twice) - as I think my body is just in total overdrive and won't calm down. I can even smell washing powder on peoples clothes which make me run a mile!
Ok - so some of you did ask what supplements I take. I Have put it all together but it's not for the faint hearted! I spend at least two hours every other week taking capsules apart and putting the powders individually into pots - for better absorption for my body as I sometimes don't break down the capsules in the gut.If there is something you think i am missing then let me know or if you think I am doing something wrong - Always open to suggestions!
Am so sorry to hear of your struggle. I take a combination med (Armour) which is probably a full replacement dose (for me) Its 4 grains which is 152mcg T4 & 32mcg T3. Paul Robinson is definately worth looking up. He has written several books including Living with T3 only which you might find helpful. He said some people can't tolerate Levothyroxine himself included.....in recent years he has found he can now tolerate a very small amount enough to give hims some T4. But he can't take much. He also has a Facebook page & support group for T3 only users too. And there are a number of people on T3only on here. So am sure you will get some excellant advice. Your ft3 is well within range so you are definately not over doing it! Palpitations are not a good guide as occur for over & under. Sweating, raised temperature usually occurs if over medicated. Keeping a daily log (though tedious) of your temparature/pulse BEFORE rising plus your symptoms/signs, meds and supplements you take linked to blood test results overtime give a great picture of what helps and what doesn't Only change one thing at a time or you won't know what helps. Am sure your thyroid being out of whack won't be helping your colitis. For me gluten free has helped me & my digestive track & tremors have settled down loads.
Keep going, keep posting. Always someone on here to help.
Thank you for the advice and I have read recovering with T3 by Paul - it was very good and put me on the path to increasing my dose. I will look him up online thanks. I keep a log of all my foods and symptoms but haven't found a quick and easy way to take temp accurately! I am totally grain free - including rice and corn but lapsed over the summer after which I had this autoimmune flare up
Oh well done you! I have a digital thermometer in drawer be side my bed so I can do it lying in bed. And note book to jot it down. It is a pain but take heart its not forever! Using the same thermometer each day will show the fluctuations. I asked my pharmacist to advise me on which one to buy. Mine you put under your tongue. I dont often do it these days as I'm very stable....lucky me! )Apart from ndt products becoming a bit of a roller coaster with problems of regulating their contents leaking out of them! )It must be scary going T3 only especially on your own....so having back up really helps! Hope you feel you get it here. Such a shame that the qualified medics are generally a pretty ignorant bunch!
The one I have looks like this and you can use under tongue or arm. Sorry this one is for young children... It would be hard to use under tongue in a baby.....lol. Have a look fir the adult version
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Am I really over medicated
Only on T4, but I want T3 medication after full thyroidectomy 
Self Medicating: The ideal starting dose for T3.
The most ideal medical person
