I spoke to my endo on the phone this morning, relating what I beleived to be adrenal/ cortisol insufficiency but then was incredibly shocked when he told me that my T3 level (bloods taken last Thursday) was 12.00 (!!!) on a range scale of 3.7 - 6.7.
I'm on the same dose (2 x 20 mcg) of liothyronine as I've been on for 12 years. The only thing that has changed is that instead of splitting the dose into 4, I now take it at 7am and 1pm and also, that I came off adrenal support (2 x 100mg Nutri Adrenal) per day last Summer.
I have moved from Morningside T3 to Mercury Pharma T3 at Christmas and this is when I started feeling unwell (ended up in A&E)
I have always been a very active, busy person but I am now virtually bedridden with a long list of symptoms. I am feeling quite frightened as I know hight T3...T3 overdose can cause a great many problems including blood clots and heart issues.
The endo is sending me for a cortisol test at 9am tomorrow and he is taking my symptoms seriously.
I think my question here is, could the new brand of T3 medication really be that much stronger or could my changing from a 4 dose regime to a two dose regime really make that much difference?
Just to add, I always have my bloods taken 2 hours after taking my meds and have been consistanly mid range in my results and have felt well for years... until now. I have been on T3 for 12 years.
My immediate reaction to this blood test is to half my T3 dose.
Many thanks for anyone's thoughts or expereince.
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ThePeacefulGardener
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I usually only stop taking supps two or three days prior to a blood draw.
The endo has suggested that I go back to taking the T3 in four spread-out doses...as I used to take it.
He says that he 'will run a variety of tests if the cortisol comes back normal' but his feeling is that it is an issue with the liothyronine - he wouldn't share whether any other patients had reported difficulties with this brand though I've seen on some forums that people have said that changing brands have caused upsets in uptake.
I've certainly not really felt right since changing brands.
As said, I can't really think straight at all - I can't keep thoughts in my mind long enough to follow them logically.
You're welcome. But, I honestly cannot see how the brand, or the number of times you take it, has anything to do with your level suddenly shooting up like that. That is totally illogical. Far more likely to be the biotin skewing the results. But, I wouldn't expect an endo to know anything about that.
My last blood tests were taken in the usual manner and after starting the new brand. The free T3 was a little higher than normal. I forgot to ask my endo for those results today...I wanted to use them as a comparison, but then forgot.
I do keep a 'how my health is' diary....I've done it for years to help try and keep track of things. I fill it in when starting a new supp or regime. I looked at it last night and since Christmas...since starting the new brand, my entries have been recording how 'old symptoms' are returning and how generally unwell I've been feeling. However, there are entries after changing my regime from a four times a day dosing to a two a day dosing....and that was last Autumn.
I am going to do as the endo has advised, split the doses again...get the cortisol test to rule out adrenal issues and take it from there.
I just hope that I've not damaged my heart! I know overdosing can weaken all muscles.
Thank you so much for your reply - it's so helpful having somewhere to go to for support. I have been feeling dreadfully isolated and frightened with this. The gp (I saw her virtually as my endo was on leave) actually said that I was having anxiety and should take antidepressents, groan.
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
If still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
Assuming test is negative you can immediately go on strictly gluten free diet
(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
Thank you so much for taking the time...and energy...to forward all this information.
I was tested for Coeliac some time ago (negative) and do not have Hashis.
I went gluten free some years back when it was first suggested on the TPA group site as being helpful. For myself, I find that it is gluten and sugar ...the combo..that really makes me unwell.
Occasionally I will have a little gluten but always know it the next day - it's a weighing up of consequences. Mainly I have a green , plant based diet with good sources of protein.
Having my gallbladder removed three years ago was a mistake and has radically changed what I can eat without there being reprocussions. I feel it also changed my ability to absorb certain vitamins and minerals. I just do my best to get into me what I need.
The biggest factor in my life is stress; I am responsible for four people...one with a serious mental health condition and one who is autistic. I'm the breadwinner and 'hold the energy' of the household. This has and is wearing me down. I literally cannot afford to be ill.
Anyway, enough grumbling - thank you again for all the advice.
Right now I am so frightened about my T3 result and feeling so ill...chest pains, shortness of breath, that I have virtually convinced myself that I am going to have a heart attack.
I have low to very low bp at the best of times and I am literally freaking out - with four people to take care of, NO support, bills to pay and I can't even stand up for more than a few minutes.
All I can take on board right now is tomorrow's test and trying to figure out whether to lower or just stop my T3 for a few days.
When I was taken to A&E in February, I was so scared afterwards that I stopped T3 for two weeks. For all but the last three days, I felt significantly better.
Thank you again. I'm just feeling very overwhelemed.
hey ThePeacefulGardener, follow your gut. I have been overdosed before, and was so weak I couldn't stand for longer than a minute, queuing in the shop was impossible, my bp was so low and pulse high, up to 150 at worst times. Bedbound for 2 months. This is a really high result of ft3, if it is correct. You can always reduce t3 a bit and see if it makes any difference. If things get worse, then it won't be that. It is worth checking bloods again as well, also checking antibodies for Hashimotos.
I've just come back from the hospital and so I'm hoping that will shed some more light on the situation.
I had thought this was just an adrenal issue but now I am coming to think that I am just way over-medicated.
I've come off of the T3 as of yesterday and am going to leave it for a few days to see if i feel any better. When I start it again, I am going back to four split doses...then get a blood test and see what's what - though, how 'we feel' is the best test of all.
I'm very sorry that you went thought all that you did - I was like that in February when I thought I was going to have a heart attack and then afterwards, was crawling around my house. Awful and isolating.
I will ask my endo about Hashi's, thank you for the suggestion and for everything else.
I think you would be wise to look at the adrenals. A lot of what you have said especially stress is much what has happened with me. You also said you have stopped your adrenal support. Sounds like your T3 is pooling due to low cortisol. If I were you get a 24 hour adrenal function test and dhea. This will show your true cortisol level throughout the day. A blood test is not very accurate as it shows total cortisol not free cortisol. It also must be done 30 mins after waking to be accurate.
Also make sure your b complex is high dose especially b5 and take 1000mg ester c that has made an enormous difference for me. Stopped my palpitations. When my T3 was pooling I felt absolutely terrible.
Hello and thank you so much for taking the time and energy to reply.
I think you are absolutely right; the thyroid and adrenals have to be in balance. Having had time now to just be still and lay down, I feel that I've had some kind of reaction to the new brand of T3 PLUS changing from four split doses to just two AND stopping adrenal support have landed me where I am now. It is totally obvious when I write it down, but at the time I made them, each one of theose decisions seemed a good one. Also, I was advised to move to two doses and I was strongly advised to come off of adrenal support. As for the reaction to the new brand of T3, this seems not to be uncommon. I've had several messages from other T3 users to say that they have found other brands 'difficult'.
I've come off of the T3 and will stay off until iI feel all the pooling has gone and then re-start at a lower dose in four split doses ...and then get a blood test. Fortunately my endo is a kind and receptive man and actually listens.
I had a 9am cortisol test this morning...I realise it's not perfect, but I can't afford private tests right now.
I do take the Sawnson B complex but will have to check how much B5 is in there. I already take 1500mg of vit c daily.....plus a barrel load of other supps.
I do find liquorice and Siberian Ginseng has supported my adrenals well.
I think my main concern....fear... right now is, in the six months of being on too high a dose and feeling so unwell, how much damage have I done to my heart? Are there tests to measure this do you know?
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