I have been on T3 37ug for some time and recently upped it from 25ug as my last thyroid test came back low. My whole body is in some kind of allergic crisis - I can't eat anything without coughing, wheezing and my ulcerative colitis is back and the bowels are not working. I went on a fast to help things and my heart would not stop pounding after two days, so I finished it. Then I tried to go from my Uni-pharma T3 to Tiromel T3 and the heart problem seemed to get worse so went back to Uni-Pharma (but I only have a few left). I have been awaiting my thyroid test results to see if there is a problem and am MOST annoyed to find they didn't do the T3 requested - last time it came back just boardline ok. However I see that I have hardly any TSH or T4?!
What is going on? Is this why I feel so terrible with heart and gut problems? I am a total mess - Can anyone shed any light on what is happening to me?
(I did try some T4 a while ago but has terrible side effects on it and felt far worse so not sure what to do here and my doctor thinks all is well as he told me all was normal with my test results!) I am in the UK.
TSH 0.023mu/l (lab range 0.570-3.600)
T4 4pmol (lab range 7.9-14.0)
vit D 194.3nmol/l
B12 -1293mg/l
Folate 10.4ug/l
Bottom of scale with while blood cells and MCH highish
They did not test my antibodies as they always come back fine
I have another doctor in the practise ringing my this afternoon but he will just say try T4 again and I feel terrible on it.
I am shaking and just in a terrible state and maybe the thyroid is to blame? (I also have Lyme - which doesn't help anything!)
Sorry for the rant - just a bit shocked and not sure what it all means is happening but may be why I feel so terrible atm.
T3 25ug first thing in am then 12.5ug at 3pm
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Tuxi1
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If you take T3 meds your TSH will become suppressed. That's just what happens, so you actually have quite an enlightened GP if they're not in a panic about this. And if you just take T3 meds, your free T4 will plummet - because you're by-passing the T4 side of things to get straight to active hormone.
But there is really no point in taking T3 meds only and then not having free T3 measured!
Beyond this, you seem to be changing from T3 meds only to T4 meds only and back again, but it's not clear how long you have been on each. Here in the UK most of us who start T3 meds do so alongside T4 meds - so we keep a higher level of T4 in our bodies than if on T3-only - and then tweak doses until we feel well. Have you tried this?
We really need lab ranges to make sense of the other lab results (US ranges are always different from UK ones) - you can edit your post to add these by using the "more" button on the bottom right.
But really, I'd suggest you get the new GP to test free T3. You may be over-medicated on your current dose.
PS extreme fasting is a bad idea if you're hypo - your body really needs a proper level of calories, and reducing to less than you need can, counter-intuitively, increase weight and other problems
I have been on T3 75mg for some time and upped it from 50mg as my last thyroid test came back low.
Did you go from 50mcg to 75mcg in one leap or did you gradually increase over many weeks? T3 should only be increased by 1/4 of a tablet at a time (6.25mcg as I believe you're on self sourced T3). Then you wait 6-8 weeks and retest and it's absolutely essential to test FT3 when taking T3. TSH and FT4 are largely irrelevant when taking T3 only.
If you jumped from 50mcg to 75mcg then no wonder you've had problems.
I have been awaiting my thyroid test results to see if there is a problem and am MOST annoyed to find they didn't do the T3 as requested but last time it came back just boardline ok. However I see that I have hardly any TSH or T4?!
TSH 0.023mu/l
T4 4pmol
The NHS generally wont do FT3 but with those results I'm very surprised the lab didn't include it.
Does your GP know you're self medicating with T3?
If all you are taking is self sourced T3 and you can't get your FT3 tested on the NHS then you absolutely must do private tests, otherwise you wont have a clue if you are taking an appropriate dose. Cheapest basic thyroid test which includes TSH, FT4 and FT3 is MonitorMyHealth which is an NHS lab which offers this test to the general public for £26.10 using code here:
We need reference ranges plus units of measurement for Vit D and B12.
Are you supplementing for any of these?
I believe your Vit D unit of measurement is probably nmol/L and if so your level is too high and if you go much higher you're at risk of toxicity. The level recommended by the Vit D Society and Grassroots Health is 100-150nmol/L with Grassroots Health's recent blog post recommending at least 125nmol/L.
Also B12, whatever the unit of measurement, will be way over what is recommended. If it is pg/ml or ng/L (they are both the same) then the recommended level is 900-1000. If you don't supplement and this is your natural level then it's very high and your GP might want to investigate why. If you do supplement with a stand alone B12 supplement then you should stop as you are wasting your money.
Oh dear! Thank you so much for your very helpful replies. I was in such a panic this morning (and maybe suffering from being too hyper as a result of a first dose of steroids last night) that I put lots of wrong info on my post (which i have now edited to hopefully make more sense!) I am in the UK and yes - the idea was to see what my T3 levels were doing since increasing - so will have to ask the doctor to re-test.
I am on 37.5ug of T3 not 75! so the increase of 12.5ug was not too much.
I stopped supplementing with vit D or B12 a week before the test - surprised if B12 is too as I have put it down to potentially being the reason for my peripheral neuropathy. Why would I be too high in vit D? I have gut problems and dont generally absorb things!
Ok - so now what I would like to know is...
Is it ok to have TSH and T4 this low or do I need to get them higher? I presume the upped T3 dose may be too high?
Could the low TSH and T4 possibly cause heart palps and gut problems or am I barking up the wrong tree and it's really the gut that is the problem and I need to get mast cells sorted out and histamine in control?
Thank you so much for your help - I really have nowhere else to turn and I can't get any sense out of the doctors and they ignore the fact that I am so unwell with T4
I don't think I have tried T3 with T4 yet but could perhaps try a tiny bit of T4 with lower T3 and see if I can tolerate that
I have those genes that mean I can't process T4 very well
Some people are fine on T3 alone in which case a very low FT4 is fine for them.
I am on Levo plus T3 combination like many others. Some are fine with low in range FT4 as long as FT3 is in the upper part of it's range. Some of us need both FT4 and FT3 in the upper part of their ranges. It's a very individual thing which only we, ourselves, can discover by experimenting and gradually tweaking doses of each hormone.
Palpitations are listed as a symptom of hypothyroidism so undermedication could cause them:
I stopped supplementing with vit D or B12 a week before the test - surprised if B12 is too as I have put it down to potentially being the reason for my peripheral neuropathy. Why would I be too high in vit D? I have gut problems and dont generally absorb things!
I am not medically qualified and can only tell you from my own experience and reading.
The recommended level for Vit D is 100-150nmol/L. I test my Vit D with City Assays which is an NHS lab which offers the test to the general public and this is how they send out the results, you will see that they consider over 220nmol/L at risk of toxicity
According to an extract from the book, "Could it be B12?" by Sally M. Pacholok:
"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".
"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."
If you are not absorbing the vitamins I don't know whether your levels would show that high, I'm not saying they wouldn't, I'm saying that I don't know.
am on 37.5ug of T3 not 75! so the increase of 12.5ug was not too much.
So day before test did you split dose as follows
1/2 tablet waking, half tablet early afternoon and 1/2 tablet approx 8-12 hours before test?
Are you aware that patients on JUST T3 are typically on something between 40mcg and 60mcg per day of T3
As you have now increased dose T3 to a level that’s suppressed TSH (shutting down your own thyroid completely) you’re possibly under medicated
So you either have to try adding some levothyroxine or trying further increase in T3
Many members have Dio2 gene variation…it doesn’t mean we can’t convert Ft4 to Ft3….it means we typically need SMALL doses of T3 prescribed alongside levothyroxine
Which brands of levothyroxine have you tried?
GP could prescribe liquid levothyroxine as trial ….but as it’s expensive it’s more usually initially prescribed via thyroid specialist endocrinologist
If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient. If symptoms or poor control of thyroid function persist (despite adhering to a specific product), consider prescribing levothyroxine in an oral solution formulation
Hi - The day before I took 25ug in the am and 12.5ug at around 3pm and was tested at 9am - Does all that make a difference to the results that are shown?
If I am not taking enough T3 then why would my T4 and TSH go down when I have increased my T3 again? Can't quite make sense of things yet.
I have tried all brands except one (can't remember which) that were free of lactose (I think - would have to find them all again and see) I will look into the liquids
TSH is the message from pituitary to tell the thyroid to work
High TSH = pituitary shouting hard at thyroid
As soon as we take levothyroxine, or especially T3 ….the pituitary “sees” the replacement thyroid hormones and stops requesting thyroid to work ….TSH drops lower and lower and eventually goes to 0 ……
Obviously taking replacement thyroid hormones is a large dose all in one go (or in case of T3 …..2 or 3 doses per day)
You took last dose T3 too early……maximum of 12 hours before test…..ie between 9pm to 11pm
So day before test….12.5mcg waking, 12.5mcg 2pm and 12.5mcg at 9pm
Ft4 is low because your thyroid is no longer working at all because TSH is 0
Oh wow - and would that not show up even more T3 in the system on testing or would it control the other measurements differently? Do you think I should take the T3 around those times in any case? I used to do it in three times but to take either side all my other supplements is hard to just changed it to two times recently. Thanks
On JUST T3 then 2 or 3 doses per day is probably more typical
Trial and error what suits each person
But on day BEFORE blood test ..always test by splitting T3 into 3 doses ….last dose maximum of 8-12 hours before test…otherwise you get falsely low Ft3 result
Personally I always split my levothyroxine and T3
Levothyroxine 125mcg per day 5 x week and 112mcg twice week
Levothyroxine at 11pm (100mcg) and 6am (either 25mcg or 12.5mcg depending which day)
Ok - thanks for the info. - that's really helpful. Is doesn't sound healthy to have a those levels at 0 but if it's safe then I suppose it's fine! The T3 just takes over and does the job? would you be only able to tell through symptoms if it was working and the bloods look ok? I have got the doctor to request T3 T4 and TSH again and we will see what happens this time!
Hi Tuxi1, that looks like an awfully high dose of T3 you are taking 47.5 mcg. Comparing with my dose, endo prescribed, I take 30 mcg per day, nothing else and that's with a thyroid that does virtually nothing. My TSH was over 95 with 95 being coma level. I feel sure your heart pounding is linked with that amount of T3, however I'm no medic or expert
It could well be too much T3 - although I am on 37.5mcg not 47mcg. I have the T3 test tomorrow and may actually reduce the T3 after that and see if this heart stops beating as hard.
Sorry, I misread the amount of T3 you take, however I still think given that since 30mcg is the maximum the expert endocrinologist I am under wants me to take with a thyroid that produces virtually nothing, that more than that is probably too much for anyone. I am aware that size/weight plays a part but an increased heart rate is an indication of too much T3, and I think that is what you are experiencing.
I do hope so - had test and reducing T3 to try and feel better. I don't feel wired - like you may if Hyper, just have this heart thump and terrible UC and IBS suddenly. We will see. Thank you
T3 with food? I was always told and have read it should be away from all other supplements and food to take effect? Is this debated? Why is it the worst thing to do to fast when on T3 (my experience was pretty bad!)
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