Hi, I still have symptoms although the last time I saw my Endo they said they hadn’t come across a patient with my set of symptoms but on paper it doesn’t suggest I need T3.
My most concerning symptoms
Brain Fog - really poor memory, recall, processing information, forgetful
A feeling in my head sort of like being on a boat
Ringing in my ears
Sweating about 3am makes me feel drained (my oestrogen was very high at my last visit and I’m wondering if I might need progesterone? Although I’m on the mirena coil but maybe it’s not enough or could not enough T3 affect my oestrogen?)
This awful feeling like the chemistry of my skin is wrong - very hard to explain but it’s worse in the night and the morning - I actually worry that I might end up with cancer because something isn’t right.
I tested Heterozygous for DIO2 & DIO1 and was Homozygous for COMT
This is my last attempt to get T3 from the Endo - I just think they should be interested to see if it makes a difference.
If they don’t then I’ll have to try myself and am also interested how to introduce it, I currently take 100/125 of Levo alternate days.
My blood test was taken 8.30 am no Levo night before and I hadn’t taken vits for a few months, I just wanted a break from it all - I can see my Vit D is low so will start with that again- I haven’t had B12 for over 6 months so thought that seemed ok?
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jamjar67
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Agree with Hidden . Would add that your free T3 is only 40% through range - so clearly not in balance with your over-range free T4 [which frankly is a pretty common result for someone who doesn't convert well!]
So perhaps suggest to the endo that if he can agree to a trial of 20 mcg of T3 meds and a reduction down to say 75 mcg of levo - and seeing what that does to the free T3 and free T4 results AND how you feel - that would seem to you to be highly worthwhile.
If he does, remember not to decrease levo and start lio together, and build up the lio dose slowly.
If you do two things at once and don't feel "right", you don't know which bit was "wrong". So drop the levo first, wait a week, then the usual advice here is to add 1/4 tablet of lio at a time, waiting a good week between increases, or longer if you feel a bit giddy, until you get to a full tablet. Some people split the dose while building up.
Tell us how you get on - and if your endo is still difficult, see if you can change to one on Dionne's list of T3-friendly endos - email tukadmin@thyroiduk.org - or ask here if anyone can recommend someone reasonably near you x
These articles are brilliant!!!!! I really think this is me!! Thankyou so much, this is so helpful and I will def highlight and send with my letter I’m compiling prior to my next appt! 🙏
I started walking and jogging thru lockdown and had to stop as I seem to have developed like what I imagine arthritic pain in my hip - I’m sure this is all due to lack of T3 and this peripheral conversion - could this be what I feel in all the cells over my skin, it’s like they are working to get something or they are starving of something!!! And I can only describe it as the chemistry of my skin is wrong!!!
I stopped my vits but will get back on my B and D - as I conclusively know that I need them now 👍
I take a huge dose of T3 - 200mcg - only because I discovered about 2 years ago that I have a form of thyroid hormone resistance. I'm not suggesting at this stage that this is your problem but just as encouragement that you are far from the end of the road re options. Without having resistance my dose could be fatal...
I suspect your cellular T3 is low, unfortunately that cannot be tested.....more on that if required However right now you need to optimise those nutrients and convince your endo that you need to trial T3....that will probably be all you need. Time will tell.
My hair, my skin (v dry) my nails, my pain levels, my memory and much more improved .....and I lost 3 stones. Levo had reached the point that it was making me ill Unfortunately it all came a bit too late for me. - I'm almost 75, I guess you are much younger therefore easier to treat - but I'm hugely glad it did because I doubt I'd be able to function now otherwise.
My medics were clueless, it was thanks to members here and much personal research that the answers I'd hoped medics would discover, and did not, revealed themselves.
It will not be a quick fix so you need to be patient and dose slowly, the body needs 6 to 8 weeks to adjust to each tiny increase, but with the right dose it will improve.
Please keep us all posted
If you are interested, you can read about my thyroid journey in my profile.
Thanks for your reply. This Endo is on the TUK list, he did say he wasn’t totally against me having T3 but my private results have conflicted with my NHS results which doesn’t help. I just think if I were him I’d want to trial the patient to see if the symptoms correct - surely that’s job satisfaction 🤷♀️
I think this time I’m going to write ahead of my appt as I forget and can’t seem to get out of my mouth what I want to say and even if I do I say it badly!!
I will certainly remind them of my symptoms worsening if they drop my dose which they will now know from my previous visits.
They did say the CCG won’t allow them to prescribe it and lots of patients buy privately - it’s really unbelievable!
Anyway I’ll have another go and know atleast I tried!!!
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