Back in 2018 (and actually for several years before that) my thyroid levels were...
TSH is 1.909 (range 0.34-5.6)
T4 10.8 (range 8-18)
T3 3.7 (range 3.8-6)
I was supplementing with 8ug time release T3 at the time. As a result of this result and just feeling so very cold and no energy etc. I upped my T3 Litho. Unipharm pill to 12.75mg and then to 18.75
Did I do the right thing in increasing T3? Or were these levels good to stay at?
Results from test in Jan 2021 were (taking 18.75ug at the time)...
TSH 3.6 (range 0.57 - 3.6)
T4 6.3 (range 7.9 - 14)
T3 3.8 (range 3.1-6.8)
Doctor told me to take T4 - got on very badly with it and went back on T3 and increased to 25ug then 37.5ug - results this Nov...
TSH 0.015 (range 0.57-3.6)
T4 5 (range 8-18)
T3 5.3 (range 3.8-6)
Always had negative TPO
I now have major digestion problems and feel like I am in a huge flare of histamine symptoms. Because I am self medicating I worry that I have done something wrong - is my T4 too low and causing digestive problems?
I saw someone had posted from Dr. Eric Balcavage and had a look at his website and book and he says this...
If you’re taking too much thyroid medication, and your cells are in a CDR, they will actually deactivate the enzyme that converts T4 to T3 in cells (deiodinase 2) to prevent thyroid hormone from reaching cell receptors. In other words, you can have plenty of T4 in the blood, but if your cells can’t convert it to the T3 form they need, you will remain hypothyroid, despite having lots of available T4 (and maybe even “optimal” free T4 lab levels). This is not only confusing, but it can also cause a bizarre mixture of hyper- and hypothyroid symptoms. You might have migraines, insomnia, or anxiety, and at the same time be struggling with low energy, constipation, and thinning hair. Not fun. Additionally, taking more thyroid hormone to further drive down TSH is also a problem. It’s definitely possible to have a TSH that’s too low. (I don’t like to see it go below 2.0 if T3/fT3 is also low.) When TSH is too low, your sympathetic nervous system can become overactivated, triggering a “fight or flight” response. This drives up the stress response in cells, makes CDR worse, upregulates mast cells, and can create an excessive histamine response—all of which put you at risk for more thyroid complications.
Well my TSH is very low and I have had a massive mast cell reaction. I know others here are fine on T3 but could this be the driving force behind my recent flare of digestive symptoms. I am not sure who this chap is or if he is to be trusted?!
Still wondering about coming off all T3 and seeing what happens (slowly of course!)
Thoughts?
Thank you
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Tuxi1
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the quote you mention isn't really referring to your situation. When he refers to taking 'too much thyroid hormone medication' he means 'taking too much T4'
It is describing a process called 'ubiquination', which is 'a thing' ... but it is related to having 'too much T4' ....... it is explaining why people with high T4 who try adding more Levo , to try and get better fT3 results, often find that their fT3 doesn't go up, even though the fT4 does .
This is because the high fT4 shuts of TSH .. and TSH drives the deiodinases which convert T4 to T3 , and also how much T3 is produced direct from thyroid gland.
but in someone like you who is taking T3 and no T4 , then 'not converting T4 to T3' isn't the problem, because you're taking it directly.
So these are your current results on 37.5mcg T3-only
Important to remember that T3-only is the last resort after all hope of a therapeutic T4/T3 combo has gone.
On T3-only lab tests become less useful because they were not developed for this purpose!
FT3 will rise and TSH and FT4 will drop
This has happened with you...it's what the body does!
Up to a certain dose level labs can be useful to ensure you stay within or close to lab range so avoiding overmedicating.
However, the journey continues!
As we increase and tolerate bigger doses we must monitor very carefully using signs and symptoms for symptoms of overmedication eg fast resting heart rate and feeling shaky or anxious.
There are no tests to measure cellular level of T3.
I know nothing of this doctor, though I would question several of his ideas, - but I do know how my own body functions on T3-only! I need high dose T3 to be able to function...my thyroid journey is described in my profile. I cannot tolerate levothyroxine.
I know nothing about Complementarity-determining regions in cells and cannot comment on mast cell reaction.
However you say TPO is always negative, this is no guarantee that you do not have thyroid hormone antibodies aka Hashimotos!
The thyroid antibodies that appear most frequently are:
Antithyroglobulin Antibody or TG Ab
Thyroid Stimulating Immunoglobulin or TSI Ab
Antithyroid Peroxidase Antibody or TPO Ab
T3 is the active thyroid hormone but to become active it must reach the nuclei of the cells. For good health T3 is required in every cell in the body in an adequate and regular supply. No matter how much is sloshing around in the serum it will not do it's job until it moves into the cells via T3 receptors. The appropriate dose and you should feel well; the wrong dose and you won't!!
Some people come to understand that this process isn't working and that there exists a form of thyroid hormone resistance preventing adequate T3 reaching the nuclei of the cells causing cellular hypothyroidism. To overcome this a larger dose of T3 is required which acts as "a battering ram" to help push some of the dose into the cells....the remainder is eventually excreted.
Currently your dose remains within the ref range so you are not overmedicated, but the form of your medication may need to be reviewed.
Medics fixation on TSH is not helpful!!
A number of things could be causing digestive problems...and too much T3 could be one of those.
Trial and error is often the way forward...you won't find the answer if you don't try things
( safely)
Keep a diary of what you change(slowly) only change one thing at a time and record how you feel.
Sadly the dose is a very personal thing because we are all different with different needs.
I suggest you look back at all your labs and note changes in relation to doses.
In 2018 with the following labs you increased T3. Were you taking any levo?
TSH is 1.909 (range 0.34-5.6)
T4 10.8 (range 8-18)
T3 3.7 (range 3.8-6)
I think at that point I may have first increased the T4/levo and ensured that vit B12, vit D, folate and ferritin were optimal for thyroid support....before adding T3. That may have been sufficient to raise both Frees. We need to work one step at a time ...I'd say you went straight to a sprint!
Thank you so much - what great info! I am learning (slowly!) In 2018 I was not on Levo and did not try it. So I am wondering if I really need to go back to the beginning and see what my base line is without the T3 and then maybe try some T4 again without the T3 (it's just when I have tried Levo. I felt so ill on it!) Maybe, because my symptoms have not got better I just upped the T3 with hopes that things would improve but I am not sure that they really have and I remain cold and tired and now with lots more gut issues. Have people done this before? Start from scratch?
How quickly can I reduce the T3 (to see what happens) safely? current dose now is 25mcg (just reduced) keen to see what happens to gut issues if I go down as I can't eat much at all atm due to histamine reactions in the gut
I once dropped straight from 200mcg T3 to nil because I had overmedicated slightly and my GP was in a flap....and said " Stop" . I knew less about T3 back then but stayed on nil for 3 days then started again on 50 mcg as she advised. It caused no problems so I can't see dropping your 25mcg in one go will harm you...but you might wish to take other advice. I guess others may have reduced more slowly.
I'm not qualified to advise but in your shoes I would start again on 50mcg levo and test after 6 weeks, it will take time to settle and you may initially feel groggy
Oral T3 is roughly 3 times as potent as oral T4 so you have been taking roughly 75mcg equivalent to T4 ...so 50mcg should be a reasonable start.
50mcg T4 is the usual starter dose for adults but you will probably require more after that test.
It is VITAL that you also optimise the nutrients (above) that should help conversion of T4 To T3
I also suggest you have the thyroid antibodies tested for Hashi's...a gluten free frequently helps
This link might also help with the histimine issue
I'm not sure where the doctor you quote is coming from when he refers to low TSH (which is a pituitary not a thyroid hormone) in relation to histamine problems.
Anyway, bear in mind, this is what I would do in your situation, I can't tell you what you should do, that has to be your decision once you have considered the possibilities.
We're all here to help so come back with any questions you might have.
Things will improve given the correct medication and dose.
Thanks for the advise. My GP is just treating the GI issues as an autoimmune flare of probably ulcerative colitis (but the bleeding has now stopped) Giving me some mast cell stabilisers and anti-histamines and steroids (although I am not taking them atm) They don't really know what to do with me. They just think my thyroid is low as I am "not well". They have referred me to gastro but that takes ages and never comes up with anything useful either. It's frustrating that we have to try and work all things out ourselves but at least we are more informed and can work with our bodies and try and help them
Just a comment on the amount of T3 you take. The endo told me my thyroid is producing almost nothing, TSH was over 95 with 95 being coma level. Even so my endo does not want me taking more than 30 mcg of T3, and that's with no other thyroid (or other) medication. I hope you have a good GP/endo watching over you and making sure you don't suffer from the possible negative side effects of T3. Best of luck, and, Merry Christmas!
However, I'm afraid some of us need much more than 30mcg T3-only in order to function.Had I relied on medics I would now be very ill....or no longer here.
Hi DippyDame and thanks for the well wishes. I hope my comment didn't come over as advice, I was just making sure Tuxi1 was aware that it's uncommon to need so much T3 and we do need to exercise some caution.
Absolutely not, I saw your words as a very sensible precaution!
I was just putting my tuppence worth in on behalf of those of us who need a high dose, which is rarely recognised....it can turn me into a mega pain in the neck!!
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Digestive problems caused by Levothyroxine.
If the problem is T4 -> T3, NOT Hashimotos.. Can using T3 work?
Problems with Hashimoto on T3
Low T3, help with results
Adrenal problem / T3 problem? A dismissive private endo :-(
