I am receiving only T3 medication after being diagnosed with Hashimotos by a functional doctor.
I don't know much about the condition, however I have been on 20mg of thybon henning split up in 2 pieces for 2 weeks now. I don't feel much better at all energy wise, and i have been having an increase in heart palpitations, difficulty sleeping etc.
I also have digestive issues(sibo) which I'm aware could be making it worse. My values are:
FT4: 15.7 reference: 11.0-24.0
TSH: 1.98 (target< 2.00) reference: 0.27-4.20
FT3: -2.8 reference: 3.6-6.7
Is this normal? Please any help would be greatly appreciated as I am unsure of where to start and can't see an endocrinologist for a while. I'm originally from the UK but living in Belgium with my partner after just moving being diagnosed, I'm very overwhelmed. thank you!
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To confirm Hashimoto’s you need TPO & TG antibodies tested. Was this done?
The immune system attacks thyroid causing lower function to thyroid.
Normally both FT4 & FT3 drop (FT3 tend to be preserved) but in your case the FT3 is under range and FT4 within range.
Was this the results before you started any form of replacement?
Your TSH is in range too which is unusual as you expect it to rise with low FT3.
So it’s possible you have a different issue to Hashimoto’s, but we need more information to advise further.
Have you been unwell in any other way as sometimes FT3 drops in response to being unwell but this is temporary.
Has your thyroid function been tested more than once so see if this is a persistent issue.
In UK -T3 is not a first line of treatment and it is very restricted.
With the results and low FT3 i can see why it’s been suggested.
Once you add T3 it will lower TSH and thyroid out put, this can cause your FT4 to lower. Most doctors discourage low TSH but if FT3 in range it might not be an issue.
Important to retest thyroid function regularly - 6 weeks after starting or adjusting dose.
Also important to test folate, ferritin, vitamin D and B12 were these tested?
Hi, firstly thanks so much for the detailed response. My antibodies have been tested, yes(forgot to include in the post):
Thyroïd peroxidase AL <15 (ref: <34)
Thyroglobuline AL: +155 (ref:<115)
My vitamin D was normal suprisingly,
b12 was .1414 ref: <197, target: <500
feratin: +247 ref: 197
and it says target value for: 50
From my understand from my bloodtest(didn't see the b12 and ferritin before),
my b12 is really high and my ferritin also.
I have been consistently unwell for over a year now, which I found out recently I have SIBO (a bacterial overgrowth in the small intestine) - so i understand this is causing high inflammation in my body (it was twice the normal amount of an average person).
I'm confused as to what to do or if I should even continue the prescribed medication?
My doctor is a functional doctor not an endocrinologist so i don't know if that matters or if he's qualified enough. I had my thyroid tested in the UK and my tsh was around 2.8, that was nearly a year ago.
This was the results before I started any kind of thyroid treatment. my morning cortisol is also low: -1.98(around 11am albeit in a fasted state). I hope that's useful. Any info is appreciated or confirmation, because I'm not even sure if I have hypo or hashimotos?
In range is not same as optimal please add exact result & ranges.
Your TPO is negative but TG raised.
Has CRP been tested as inflammation marker?
The SIBO likely contributed to poor absorption and lowered nutrients.
I believe a endocrinologist would not have prescribed T3, until investigated further - especially not in UK - but that not to say you don’t need it.
I’m not familiar with starting T3 but it think 20mg is quite a high starting dose, and likely causing the palpitations & insomnia.
I know cortisol should be tested early as this is when cortisol is highest & it drops throughout day. The test should have a range by time frame.
Do you have a doctor investigating further. EG Short Synacthen Test (SST)?
I’m not a doctor & can’t diagnose you but I think as you have both low TSH (low FT3) & low cortisol you need to investigate central (secondary) hypothyroidism. Where this issue it with pituitary (or Hypothalamus). As opposed to primary hypothyroid where the issue is with thyroid itself.
Pituitary can be affected by blows to head / blood loss.
My CRP was tested in the uk(i think it was crp, they described it as inflammatory markers) on the nhs a while ago. I remember them saying it was very high before I moved, but not sure on the exact number. they thought there was something wrong with my liver.
Sorry, what is my TPO/TP? Does that being low and raised indicate something?
No I have no doctor at the moment who has suggested that. Just a functional one I see once a month but I am going to visit one shortly when they're open. Thats very interesting thank you i'll raise that concern with them. If it was secondary wouldn't increasing T3 be dangerous due to adrenal concerns? So I assume you would suggest I have my SST, if this is the case should I continue the medication or taper off it to a smaller dose? I Thought taking 20 a day from nothing was quite intense so i may taper it to 10 a day, besides I feel no different since first taking it a few weeks ago. Does this mean I may not have hashimotos, but secondary hypo on its own as a possibility?
High B12 can occur with liver issues & as liver is involved with FT3 conversion that could certainly be a factor.
High ferritin often seen with inflammation.
TPOab (Thyroid Peroxidase antibodies) & TGab (Thyroglobulin antibodies) signify autoimmune activity. Antibodies are created to “clean up” substances eg proteins which should be in your system (they should be contained in thyroid).
They are a result of the condition not the cause. There isn’t a “too low” a level as in theory 0 is normal. but once it reaches a level it’s taken as evidence of the condition.
Your TPO is negative, as below the limit. but they can fluctuate it might have been higher in past or might be in future.
A minority of those with Hashimoto’s do not have positive levels but do have TGab. Your TGab is minimally raised.
SST normally next thing to investigate when cortisol low, but I’m not knowledgable enough to say for sure. Hopefully someone who knows about T3 only treatment can advise what the best step to take with T3 dose. Changing too often likely to make matters worse especially without testing and I’m not confident enough to say what going on and what you should do.
Thats fine, I appreciate your advice I'm learning a lot more now, my doctor was not very informative about the condition as I can only see him for 30 minutes at a time. As for the TGAB does that indicate my hashimotos is not too severe. So in theory my liver could actually be what is disrupting the T3 signal conversion, and not my thyroid? Or in my situation it would likely be both as my TGAB is slightly higher? I never even thought of my liver having issues and affecting my T3 levels as a result, thank you so much.
I will mention all of these points to my doctor, bless you for the information I was scouting facebook and reddit and no one could give me an informed response like this. As for the T3 I will continue it untill I talk to my functional doctor who prescribed it. Is there any practical advice you can give me in the meantime? I assume supporting my liver and cutting down my b12 intake would be benefical as I was eating liver occasionally for the b12 boost(not anymore after seeing my results).
There is a lot to learn & many doctors even specialists don’t always test & monitor the right things.
TGab can be present in healthy individuals but generally positive levels indicates hashimotos & other autoimmune issue affecting thyroid also thyroid nodules.
The antibody levels doesn’t directly reflect the severity of the conditions so often they are used only for diagnosis only.
The TSH signals thyroid to produce hormone & I think it has a small involvement in conversion & the higher the TSH more of the T4 will be converted, but as far as I know there no “conversion signal” even without a TSH there should still be conversion.
I’ve had a undetectable TSH nearly a decade and have no apparent conversion issues. Even though I now take a anti thyroid to reduce what hormones can be made.
So you had 20mcg T3 for 2 weeks, based on 1 set of results. I think most doctors would stop T3 & investigate much further & test to find out what’s going on. Liver test & iron panel.
I’d be reluctant to stop it as the FT3 was very low. 20mg may be high replacement to start but once you’ve adjusted the palpitations & poor sleep might improve.
Might be worth reducing until you can retest function.
The sleep has improved, as in i take melatonin and don't wake up throughout the night with hot sweats the last few nights, heart palpitations have decreased also. I think I will just taper to a lower dose until I know exactly what is going on. I'm a bit confused because my doctor said my liver was actually doing well, but then why is my B12 and feratin so high?
I don't take any supplements except a NOW liver support, and vitamin D3 and magnesium.
So just to clarify it is likely I do have Hashimotos but not definitely?
As far as I'm aware I could also just have something called low t3 syndrome someone mentioned?
I missed you question re - “If it was secondary wouldn't increasing T3 be dangerous due to adrenal concerns?”
No no exactly - Primary & secondary hypothyroidism is treated the same way ie replacing the low hormone.
Rising T3 too quickly & over range is not ideal and will be viewed as dangerous by doctors although if you get your FT3 to a level better in range you’ll likely feel much better.
The thing is because you only had the 1 set of abnormally low T3, we cant tell if it’s an one off anomaly / autoimmune / or a secondary issue.
Introducing T3 will alter results so it might be more difficult to establish what was going on.
With autoimmune thyroid levels tend to fluctuate but with central hypothyroidism that’s less likely so it’s always better to know what going on.
You can assess conversion only once FT4 is good in range, but your FT4 was only 36% through range. So it’s not accurate to say you have high FT4 low FT3 therefore = conversion poor.
It’s possible adequate T4 would have balanced both to suitable levels.
Once you introduce external T3 you won’t be able to look at conversion as there no need for the body to convert it’s a case of getting the levels to where you feel well.
OK I think I understand better now, thank you. So ideally I should have waited another 4-6 weeks to test again to rule it out as being a potential one off?
I was under the impression by my doctor just having even slightly elevated antibodies would confirm hashimotos on its own, but I think I understand now you can also have T3 issues and higher antibodies as a result of a secondary systematic issue? Or is it confirmed by the TGAB that it is hashimotos? Sorry if you already answered that I'm not very good with comprehension right now!
Thank you very much for the info. I just assumed my FT4 was high but I didnt calculate it properly.
To summarise: I'll mention central hypothyroidism as being a potential cause,
and to question whether or not this may not be strictly hashimotos due to other factors that could affect my T3 conversion and a lack of data, and/or T4 on its own could have supplemented fine as I don't have optimal T4 anyway.
Plus when I did the test I was fasted and was fasting before hand for my sibo issues. I'm not really sure how to approach this now other than to continue taking the T3 but in a smaller dose? Would it be possible for me to propose to wean off of it and then re-test to make sure I do have difficulty converting T3?
Another person also mentioned I could have low T3 syndrome which is a separate problem to hashimotos all together, but they may not have been accounting for secondary hypothyroidism as they said just having antibodies does not always mean hashimotos. Your answers have been very helpful me and my partner are going to review them later as we were both confused by the whole thing.
I think perhaps 1 confirmatory repeat test might have given more information.
Usually doctors are too dismissive, I rarely see someone being too quick to treat - but the under range FT3 likely prompted this reaction.
“having even slightly elevated antibodies would confirm hashimotos on its own”
Strictly speaking, yes, a positive result does confirms autoimmune. but the antibodies aren’t what’s treated it’s the levels.
Having positive autoimmune supports early treatment as the level approach treatable levels but many doctors would say in range TSH & FT4 doesn’t not require treatment.
TSH can be unreliable for many reasons but low & FT4 & FT3 should clearly be treated if confirmed to be persistent low. Your
TSH & FT4 are in range - so your FT3 might have naturally risen. Your TSH might have also risen revealing hypothyroidism.
Fasting before a test (overnight) is recommend for thyroid function, also testing early in morning (around 09.00) as that’s when TSH is at its highest. When you test next, time it so your replacement dose is due & your last dose was taken 8 - 12 hours before. ( If you split the dose) Otherwise it will be falsely high.
I mentioned central hypothyroidism also as TSH & thyroid low & cortisol is known to be low. but really lack of data is your issue.
Are you really taking D3 - 10,000 iu a day? or 1,000. What was the result & range for vit D & was test in ng/mL, or nmol/L. Had you taken vitamin D on day of test?
"TSH & FT4 are in range - so your FT3 might have naturally risen. Your TSH might have also risen revealing hypothyroidism. ",
Do you mean in general this may occur after the test due to having appropriate TSH, and FT4?(Another reason to have checked it more than once).
I have checked my blood results again (today I've been researching all day, also the results were in dutch so i've had to go back a lot to correct myself)
and my adrenal cortisol was actually:
7.2 the reference range is: 4.8-19.5
but my free morning cortisol was only:
1.99 (reference range: 2.00-12.00)
That would indicate to me I am more prone to lower cortisol also?
I will ask regarding a SST to confirm any potential cortisol issues.
I am taking 10k a day as I knew vitamin D was good for hormone function for a while now and suspected inflammation issues. My vitamin d value was 74, and the ideal range is 40-100.
I would assume though I would have felt better within a few months if my T4 and TSH would have naturally improved T3 production without supplementation, but I'm guessing that isn't enough time for things to regulate anyway/and theres the potential of my intestine not converting T3 and liver.
Yes thats why I was so anxious about taking the T3 but I just assumed he knew best, however I'm quite frustrated at how aggressively he's approached it now without taking into consideration potential HPA or stress issues.
Again thanks for your time/help, and please don't feel obligated to keep responding to me if it's an inconvenience you've been a great deal of help
I take T3 only and my health has been restored and I follow Dr John Lowe's advice who took T3 himself and was also an Adviser to Thyroiduk before he had an accident that caused his demise.
I shall give you a link to his site and his widow has been looking after this.
T3 (liothyronine)restored my health completely and also reduced the high palpitations I had when taking levothyroxine (T4). It is also the 'active thyroid hormone' whereas T4 is inactive and has to convert to T3.
A lady I met took levothyroxine alone (T4) and she had good health and was well and active upon it. I assume it is our bodies that dictate what's best for us.
One of the past favourite replacements was Natural Dessicated Thyroid Hormones (NDTs) but it was removed from being prescribed by the NHS despite its safety from 1893 that enabled people not to die prematurely.
Having Hashi's doesn't always mean you need T3-only.
Hashi's causes your thyroid levels to fluctuate.
Medics tend to treat by TSH which is not a reliable marker
FT3 followed by FT4 are the important labs
Have you had other thyroid tests before Hashi's was diagnosed....I'm thinking of evidence of fluctuating levels.
Comparing your FT4 with FT3 I'm wondering if you have a T4 to T3 conversion issue....was this discussed? This may have prompted T3-only.
Were you ever offered a T4/ T3 combo? Usual treatment if conversion is poor.
However, taking your FT3 here....
FT3: -2.8 reference: 3.6-6.7
With this FT3 lab you are clearly undermedicated
However I'd suggest that your doctor is medicating you too fast with too high a dose
20mcg ( not mg) can be too hefty a starter dose and is putting your tired system into overdrive, hence the palpitations, digestive issues etc.
Perhaps if you had started with 5mcg daily for at least 2 weeks then add another 5mcg ( ie 10mcg daily) and hold that for another 2 weeks + then see how you feel. If symptoms persist add another 5mcg, wait again for 2+ weeks and repeat.
If you reach 20mcg hold that for 6+ weeks and test again.
The results will point the way forward
Some people split their dose some do not....it is really trial and error to find out what suits best
I need a supraphysiological dose of T3-only and take it all in a single dose at bedtime.....we are all different with different needs
Titrating T3 is a long slow process.....more hurry less speed!!
In your shoes I'd drop the dose back to 5mcg daily ( it won't do you any harm....I dropped from 200mcg T3 to 50mcg at on stage on GP's advice!)..... and start again.
It's a lot to take in ( been there and been overwhelmed too!) but as you slowly read, learn and understand more it gets easier.
Now you mention it I believe the conversion issues was discussed lightly. Thank you so much for your response I'm really stressed and ill right now and reading your post made emotional this group has already been so supportive and i've just joined. I was never offered a combination of FT3, and FT4, in one session he diagnosed me after reading my labs, symptoms etc, and prescribed me t3 only. Prior to this I never had my T3, T4 measured (lived in the uk was rejected by gps on nhs etc). 5mcg daily as in once a day or twice a day?
I thought he prescribed me too high of a dose (should have trusted my gut). Thank you so much for the reassurance. Do you think I should make sure as to why he hasn't prescribed t4 as well then? How do medical professionals generally interpret poor conversion of T4 to T3, is it purely based on my T4 being high but my T3 very low?
Of course I'm going to check all of this when I can talk to him, but I assume stopping T3 all together would also be a bad idea also? To clarify I just want some sort of plan until I can contact him.
May I ask also when first taking T3 I was under the impression I would feel more energy within a few days, to a few weeks; that's another reason why I'm concerned, i understand its individual, but how long did it take for you or was it dose/time dependent? Thanks again!!!
Yes, high FT4 with low FT3 indicates low conversion.
Some of us have thyroid genetic tests to indicate this but it's really not essential. My test showed that I have inherited a faulty gene from each parent which increased poor conversion. It doesn't change the treatment.
He should have tested the nutrients essential to thyroid function....
vit D, vit B12, folate and ferritin
It wouldn't surprise me if your Vit D is deficient!
But before adding T3 we generally take T4 mono and raise the dose towards the top of the FT4 range to find if that produces adequate T3. If the FT3 level doesn't rise sufficiently then T3 is added
But...things could be different in Belgium!
You're right, stopping T3 would be a bad idea given your low FT3 result
I'm afraid feeling better in a few weeks is highly unlikely....it takes time, firstly to find the correct dose and secondly for the correct dose to settle into the system. Way back, 20+ years ago - when I was first diagnosed the GP said to me " this little white pill is all you need to feel well again"....that was a load of old nonsense.
Your expectations have been set too high and that just makes life more difficult than being given the hard facts!
It turned out that I have a rare thyroid condition so it took me a long time to work out what was wrong and how to self medicate myself....roughly 2 +years!
Your recovery should be faster!
But....given time, patience and the correct dose you will recover.
Stress and anxiety are typical symptoms of undermedication....you are not mentally unwell, just wrongly medicated
Hang onto that thought!
In your shoes I would proceed as I suggested above, see
" Perhaps if you had started....."
I'm not a medic just another patient who has had to do the work that medics should have been capable of doing....but, were not!
Listen to your body ....as an old medic friend of mine used to constantly repeat!
Thanks so much for your compassionate words. I should have corrected myself, he did test for vit D which turned out to be normal range, (i was taking 10k vitamin d daily),
vit b12 and feratin was actually abnormally high which i have discussed with another member that it could be an indicator of poor liver function, which would also explain low t3 (poor conversion in liver)and iron was normal. I see now my T4 wasn't optimal anyway so it baffles me why he's prescribed me T3 FIRST after one lab result!?
You're right I raised my expectations too high haha i was in such a rush to feel better so i take part responsibility for that in my case.
I'm sorry you had to go through that I had years trying to figure out what was wrong, its only when I went private in Belgium and got extensive labs done I have a bit more clarity now after the NHS rejecting me several times.
Thank you for reassuring me I will just taper my dose and continue that until I see him and to discern whether or not i require such a strong dose on its own, or I just need to supplement with more T4. I'm quite annoyed at his aggressive approach but at least I didn't have to wait as long as yourself.
Just wanted to suggest that Atrantil might help. I used to be so bloated I looked 7 months pregnant. Within a week of taking 6 Atrantil a day, I felt so much better. It is still relatively early days in my attempts to clear the SIBO and I appreciate that what works for one person might not work for the next one.
I order my Atrantil from Supplement Hub. Don't know if they'd post to Belgium though.
Good luck getting your other meds/dosage/combination sorted out. I've been there too, so I know what it feels like. 🦋💚
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