I have been thinking something over since joining this forum and wanted to ask a Q.
Last year I discovered STTM and FB forums associated. From there I was recommended a functional doctor (who I'm not allowed to name to protect the forum). This doctor put me on the following regimen:
Stop:
150mcg T4
Start:
50mcg T4
50mcg T3, increasing T3 by 5mcg every 5 days.
1 capsule of ACE as per my adrenal saliva results that were all normal but suboptimal.
At around weeks 4 into this (so 50mcg T4, 30mcg T3) I experienced the most horrific mental health crisis I have ever experienced - I thought of nothing but suicide, I actually couldn't even sit up straight, my nervous system wanted to curl like a wilting flower, it was torture, it felt like my system was in flames. I couldn't eat a thing. I was bed bound and my Mum had to look after me as if I were sectioned.
I know it sounds beyond stupid but I didn't realise it was the T3. I have suffered with severe mental health issues since the onset of my hashi's, so I'm not very good at differentiating a reaction to something versus my existing mental state simply deteriorating. Anyway, out of panic I just withdrew the T3 (and everything else I was on such as supplements etc.) "in case it was the T3" not believing it was, and miraculously, my normal baseline (that isn't great, but isn't actively, unrelentingly suicidal) returned within 5 days.
Since this ordeal, I have always held that T3/T4 combination just "doesn't work for me." Since being on this forum, HOWEVER I have started to wonder... Was the actual issue just simply that I was instructed to increase the T3 much too fast? Have those on T3/T4 combination raised their dose at a similar rate? And if this fast dose increase isn't the reason I reacted so badly, does anyone have a theory as to why I reacted this way?
Since my adrenal results were nothing out of the ordinary, the doctor at the time went on to recommend I undergo very expensive testing, which I did, and I have been cleared of Lyme and mold toxicity. I have since stopped seeing him, and now am trialling Armour with an extortionately expensive endo (again, cannot be named) under the apprehension that I cannot tolerate T3/T4 but now I wonder if that is actually true...
Heavy-handed adjustments are the cause of so many poor experiences.
Obviously, in crisis situations (myxoedema coma or thyroid storm/crisis, massive under-dose or massive over-dose), there is a need for emergency action.
Otherwise, slow and steady is usually the key.
If someone adds a tiny amount of T3 and feels a bit better, they will naturally be desperate to add a bit more. (Whether or not T4 dosing is changed.)
But allowing your body to catch up and re-balance (who knows the details? just grabbing at words) as you go is vital.
Give yourself the chance to pause for weeks, or months, at each step. To look at how other things are changing.
Why, we even see people not being happy when changed from 125 levothyroxine to 100 or 150. What's wrong with 112.5 or 137.5? Even as an interim step.
Often we see reference to testing six to eight weeks after a change. Which is technically reasonable. But don't take it as meaning all adjustments to a change of dose have completed. We could continue altering inside for many months - albeit slowly.
Others who have tried T3 are far better placed to make suggestions of better approaches.
this is just really astonishing. I can see I was just given bad advice on how to increase t3… that’s a bit of a relief actually because I was worried I just can’t tolerate t3 full stop. But low and slow seems to be essential for me.
Relentless, Armour is t4 and t3 in a fixed ratio so yes you can tolerate t3.
One of the benefits of combo as opposed to ndt is that you can alter the t4 and t3 doses individually to suit you.
The advice you were given on adding t3 made you increase too quickly. There are a few folk who went straight to full dose t3 from day one and got away with it but most start slowly.
I was on 100mcg levo. My endo thought my dose would be 50mcg levo and 20mcg lio t3. Infact the dose I have ended up on after 2 years of adjustments is 100 levo and 7.5mcg lio both split into 2 doses. Some folks only need a small dose of lio.
This is what I would advise adding lio to a levo dose.
If ft4 is not 80% or higher through range do not change your dose of levo. If ft4 is high reduce levo by 25mcg then wait a week for levels to drop. Add quarter tablet or 5mcg lio t3. Wait a week. If all ok add another dose of quarter tablet or 5 mcg. See how you feel. If you want to stop adding any more lio then wait 6 weeks and do bloods. If you want to continue adding lio increase by quarter tablet every 2 weeks until your total daily dose is 1 whole tablet. Stop. Wait 6 to 8 weeks and do bloods. Be prepared for it to take a while of slowly and methodically altering doses of levo and lio one thing only at a time until you find what suits you as an individual.
wow… this is just absolutely not what the doctor did with me at all. I realise that I actually can do t3/t4, it was just badly titrated. Thanks so much for the insight. Scary that even the doctors willing to stick their necks out can get it wrong ☹️
It's not clear whether you were taking 30mcg or 50mcg T3 but it is a huge dose to start with in either case. And if someone needs T4 and T3 then 50mcg T4 isn't very much.
I think your doctor reduced your T4 too much and started you on far too high a dose of T3. And I'm guessing these things both happened on the same day, or within days of each other?
It is usually advised on here that people start on 5mcg T3 and add another 5mcg per day roughly every two weeks, depending on your response.
Do you have your Thyroid Function Test results, including Free T4 and Free T3, from when you were on 150mcg T4?
yes sorry - I said “At around weeks 4 into this (so 50mcg T4, 30mcg T3)” so I mean to say that I started to have these horrific symptoms when I was on 50mcg t4 and 30mcg t3, but was trying to make my way up to 50mcg of both as per the docs instructions.
My results on 150mcg were -
Tsh 1.8
T4 16 (12-22)
T3 2.6 (3.2-6.8)
BUT I was on a ketogenic diet at the time to try and help my mental health. All that keto did was lower my t3 even more! Ugh.
As a general rule, steer well clear of STTP and Facebook forums. I have seen so much bad - even dangerous - 'advice' given on all of them. Stick with TUK.
learned that a little bit late but yes, I think I agree with you at this point. Paul Robinson gave me advice in his forum that had me admitted to a psych ward.
thanks Shaws, yes it was a total surprise. I actually went back to the forum and added a comment to my thread “just to let everyone know I followed this advice and I have been admitted to a psych ward. I have been advised never ever to stop a hormone abruptly without a taper” (I had wanted to know how to get from t3 only back to t4 only and Paul told me to stop the t3 and begin the t4 but after two weeks I went into some kind of psychiatric shock/state of withdrawal - Paul removed me from the forum and blocked me when I commented what his advice had done. I emailed him to express my confusion and horror that I’d been removed, and his forum also held a lot of my personal health information that the endocrinologist and psychiatrists at the time needed to try and treat my crisis, but he would not give me access back to the forum. When I asked why I had been removed he said “because you joined and left the forum too many times”
I am disgusted that he was able to do such harm with not even a note of remorse, but I’m still here and still trying to get well so I am focusing my attentions there now.
thank you for confirming that… I now finally realise it was just bad advice and I will no longer put myself in the “can’t tolerate t3” (and is therefore doomed) box.
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