From all my test results in my bio, it is known I am a poor convertor. From recommendations within the Group back in 2016 it was felt I needed to add some T3, which my Endo at the time wouldn't do because of my severe anxiety levels and he said it would have to be dosed very carefully.
I started the T3 back in 2016, fiddling with doses and first results below
****26th July **** - after adding 10mcg t3 on 30th June with 100 Levo (dropping from 125)
***15th August**** - after being on 15mcg t3 and 75 Levo for just over 2.5 weeks
TSH 0.97 0.27 - 4.20 IU/L
Free T4 13.77 12 - 22 pmol/L
Free T3 H 9.34 3.1 - 6.8 pmol/L
The above test then showed my T3 well over range with the 5mcg increase, and from those results I was advised to leave off my T3 for a couple of days and then start back on a lower dose which I did and then worked my way back up to the 10mcg which I am still on today.
All my tests still since then in my bio still show T3 not high enough in the range and the test result with the tiny increase showing me over range IS the reason why I have never tried increasing it again despite being recommended to so many times over the years, but the fear stopped me
DILEMA!!!
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Jefner
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I think sometimes we are so used to doctors treating the lab work we follow on. Let your symptoms or lack thereof guide you and calibrate the blood tests to you . Know where your results need to sit to feel well rather than trying to fit to the tests. Are you experiencing any symptoms at the moment? Are all your vitamins and minerals at good levels to support metabolism?
I have read about last 5 posts. You seem to be a very logical person and have a good handle on your own condition. It is, as you point out strange you went dramatically over range for FT3 when you upped the dose by 5 ug. It does seem a much larger jump than one would expect.
When you got the results in August had you been experiencing an even more severe reaction, or were the results a surprise to you?
i actually can't remember that far back in how I felt, except the anxiety was severe along with finding out I had Hashis and my antibodies were extremely high at the time. It surprised me, which has obviously put me off increasing again which a lot recommended and still do over the years
It is a dilemma- especially if you have higher cortisol- I suffered with anxiety, suicidal ideation as well as many of the physical when left under medicated. It’s in my bio 😉
I understand your trepidation as if you are feeling bad now the worry is it could make you feel worse, but conversely it could help. Only trying will settle this, but it might help to find a GOOD practitioner who understands, not necessarily an endocrinologist that can support and advise unless the endocrinologist who prescribed initially might be a candidate? Don’t forget the thyroid uk list is always being updated and you can ask for private messages for recommendations- start a new post if you do want to go down this route. I’ve compiled a post on autonomy (with information) and linked to a post on low TSH by tattybogle and a post on NICE guidelines NG145 highlighting where the contradictions are. Knowledge is power…..
have been back on my T3 now two full weeks on Tuesday and feeling better than I was and looking to test Monday or Tuesday. Shouldn't be too soon should it? Looking at those results I may consider adding a tiny amount say 2.5mcg and see how I go but I know taking it well away from the mornings is better for me on the anxiety front. I can't get to see an endo unfortunately, hospital they keep making appointments for me is half hour drive away and I used to see a one at my local hospital which is only two miles away and a better chance of my getting there, plus I can no longer afford the services of a practitioner
have been back on my T3 now two full weeks on Tuesday and feeling better than I was and looking to test Monday or Tuesday. Shouldn't be too soon should it?
Why are you testing so frequently and closely after a dose change?
I know you’ve been at this a while : ) so wondering if there’s something I don’t know, as all I have ever read is that no test before at least 4 but better 6-8 weeks is useful. Our hormones are volatile as the kick off complex chain reactions in our bodies over that time. Creating ups and downs until they settle at a stable level.
I don’t want to presume there isn’t something specific about your situation, but at face value I would say you should wait 6 - 8 weeks to test, and also equally let how you feel (at 6-8 weeks NOT 2 weeks) be your guide.
"Why are you testing so frequently and closely after a dose change?" I haven't changed my dose, I was left without my T3 thanks to the Pharmacy and missed around 2.5 day's doses
Also, scanning your Levo comments below re to 125 vs 100.
My last titration from 50-75 I did in 12.5 increments over 8 weeks each. If I need to increase Levo again after this I’m likely to do in increments of 6.25!!
I feel like adjusting is like steering an ocean liner. You tap need to tap wheel a little bit and wait a long time after to feel the boat turn. If I did 25 at once I’d be too nervous that in 8 weeks I’d be over correcting.
This post is getting a little long, so you may have answered this somewhere else - but how are you feeling right now?
my anxiety is a little better now my T3 has kicked back in, as I have been back on it now for nearly two weeks.
All this is so difficult and obviously tweaking takes weeks and weeks and weeks and before you know it years have gone by, which it has for me and still getting nowhere
Well, again, the best practice is one change, wait 6-8 weeks, take a symptom assessment, and titrate.
And it’s not that this is guaranteed to work … it’s more that doing anything else will definitely NOT work.
1) Do the slowest of changes… not 25 all at once, do 12.5, or less. Your body needs the time to settle no matter how much we want it to be instant. 6 weeks is a minimum to wait, 8 is better. My experience and others shows that week 5 can be the worst! And by week 6-7 everything settles down.
2) Also, changing one thing at a time - and only one. Because… whether it makes things better or worse, that is the only way you will know what caused the improvement. And that’s the only way you can decide what to do next.
Radd notes below that 10 months ago he would have stuck with smaller/split increase “and stayed on that dose for many months.”
I added T3 9 months ago and as I sit here now this is the first time I actually feel settled… less palpitations, less anxiousness, less of that panicky feeling. A full 9 months of palpitations later lol!!!
Also, adding 12.5 Levo these past few months has been soooo calm. So after 18 months of methodical, low, slow increases I feel like I have a chance now. I have a long way to go. But I’m not fighting it every minute.
Seeing below - was July 2023 your last blood test?
Even so, if I were you I would wait a full 6 weeks to test if you think that skipped T3 threw you for a loop. But that’s just one opinion.
Yes as the others have said low and slow- and you are not a moaning minny just a person working towards their sweet spot. But take heart if you are feeling better than you were let your body catch up. HRT is another variable into the mix so if you change anything with regard to that hold off changing anything with thyroid hormones. There is no way to compartmentalise these variables they all affect each other in you.
and just over two weeks is still too soon if you have been off medication for whatever reason. Low and slow.
The two results above - for the July 26th, how many weeks had you been on that dose at that point… and as you note, the August 15th was only after 2 1/2 weeks.
There’s too much detail in you bio for me to quickly grasp - but a high T3 after 2 1/2 weeks of a dose change shouldn’t even be considered.
In that post (sane as the one radd linked to) there was a lot of “tortoise and the hare” advice. And reassurance that as we titrate towards an optimal dose for ourselves, we must find patience we didn’t know we had.
In all the craziness of our horrible symptoms while we search for our sweet spot - the one way I stay sane is by making one decision every 6-8 weeks, set it and forget it.
Then I track symptoms and post on the board if I get worried. But I have never made more than one change in a 6-8 week period.
And it’s working. I’m not “better” yet, but when I stop focusing on the daily ups and downs, it is calming to be able to see the forest through the trees, the long trend line over the past 18 months. I still have many 6-8 week steps to go, but although not better, I am so much more calm even in my symptoms because I know I’m on my way at least.
Sorry for the late reply but I've been without internet.
I've had another read through and still think upping the T3 dose was/is contributing to driving your high anxiety levels. If this were me I would never have upped T3 levels by adding more meds.
Many of us need additional T3, some higher amounts than others but in your shoes I would have stuck with medicating small amounts, say 2.5mcg or 5mcg split into twice a day to introduce T3 more slowly and stayed on that dose for many months. T3 has a lot of changes to make and the body can become intolerant of it very easily when we have lived with low levels for many years.
Here is my last 2 test results. From my April result my T4 was quite high on 125 Levo so I dropped it by 25mcg but as you can see in the July result it went too low so I went straight back to 125 and that's where I have been ever since, but changing the dosing times of my T3. Someone did say at the time to go back to 125 Levo but only take it around 5 days a week but I receive so much contradictory info tbh, and with my brain fog is so difficult to think straight sometimes, sit and really think about it, tweak something and then forget to note when I did that. When I restarted my T3 again two weeks ago after the pharmacy left me without, I decided to split into 3 doses but don't think it worked as I felt kinda drowsy for parts of the day so thought that 2.5mcg hit probably wasn't enough, but then again I think I was suffering the withdrawal of all those missed doses.
(3rd July 2023 - 100mcg T4 + 5mcg T3 4pm ---5mcg T3 around 7pm)
Cortisol (Random) 255.0 6am - 10am 166 - 507 nmol/L New range
I know Jefner, and you will receive contradictory info because as patients we are giving you accounts of our own experiences and opinions.
I do feel for you because anxiety is awful. I suffered with it after starting T3 together with a years long bout of crying. It was all alleviated once I started HRT. I don't mean to bring further confusion but have you had sex hormones tested. If you are peri-menopausal that could be contributing to your symptoms also.
I am post meno now and on hrt patches but not a high enough strength. I did consult with a private meno specialist who moved me onto the gel as I wasn't absorbing enough through the skin but when after doing another test she told me to increase once again, I felt as ill as I have recently and suicidal, it was so bad. She treated me more by a script than an individual case so I left her behind; she really didn't care. I couldn't just stop it so went back to the patches so at least I was still getting some so no withdrawal and that's where I have been for the last few years. My GP was going to discuss it with me, but only dealing with one thing at the time, it's been put at the bottom of the pile for a while now. I just wish I hadn't started this T3 and really wanna come off it but not sure how to do it, everything just gets in a horrible mess with bad symptoms with me
When you moved from HRT patches to gel, did you also have Utrogestan capsules?
Everyone needs T3, it's just how much we require and how much we can make ourselves. All hormones work together and there are so many essential cofactors and others that impair good synchronizing, once out of balance it can be difficult to repair. My motto is low and slow (eg holding for several months at a time) as it really can take this long for systems to catch up and realign with each other.
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