Need advice on dose since increase of T3 only t... - Thyroid UK

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Need advice on dose since increase of T3 only treatment for Hashimoto

okaykay profile image
34 Replies

I wrote back in December right after the holiday. I am on T3 only hormone replacement therapy for Hashimotos. I have a T4 conversion problem, which is why I’m on T3 only. My results 7 weeks ago were TSH 0.09 and FreeT3 was 2.69 (see reference range below for in range info.) I was taking 35mcg of liothyronine and it was increased to 45mcg daily. My TSH is now 0.01 and my FreeT3 went up to 3.17. I have absolutely no hyper symptoms at all. How much should I ask to increase liothyronine, based on the number below, that’s not even halfway through the reference range. I did jump up 10mcg in December. I typically only do 5mcg at a time, but my T3 was barely in range. Should I ask for another 10mcg increase and only add 5mcg and retest in 6 weeks to see where it’s at, then add the other 5mcg if it’s still not in the upper 1/3 of range? My labs were done fasting in the morning and 28 hours since my dose of T3. I would love to have some advice. Thank you In advance. I see the FNP tomorrow. It’s my first time back in the office since my doctor died of Covid on December 12. I miss him so much. 🥲

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Wired123 profile image
Wired123

Are you under the care of a doctor?

okaykay profile image
okaykay in reply toWired123

Yes, I am.. way to many doctors. 🤪

SlowDragon profile image
SlowDragonAdministrator

Was test done as early as possible in morning before eating or drinking anything other than water

Last 1/3rd of daily T3 dose approx 8-12 hours before test?

Do you split your T3 dose into 2 or 3 doses per day

Have you tried taking levothyroxine as well as T3?

Many Hashimoto’s patients find they need GOOD Ft4 and Ft3 levels

As you have Hashimoto’s are you on absolutely strictly gluten free diet

When were vitamin D, folate, ferritin and B12 last tested

What vitamin supplements are you currently taking

We need optimal vitamin levels

okaykay profile image
okaykay in reply toSlowDragon

Thanks @SlowDragon my vitamins are optimal. I supplement all of the ones you mentioned and then some. You gave me lots of great information quite a few times. I’m not on here much. I own a Salon and work full time, even when I’m dragging. My appointment went well. Now I’m off for an ultrasound as he didn’t like the large lump he could feel on the left side of my thyroid. Hopefully it’s nothing. I do fast for my tests also. I take my dose one time, but am going to try to break it up into 4 doses to see if i feel better dosing it out through the day. Thank you again for responding. Be well. 💛

SlowDragon profile image
SlowDragonAdministrator in reply tookaykay

If test was done 24 hours after last dose T3 then Ft3 result will always be falsely low result

Even if you normally take T3 in single dose, on day before blood test it’s important to split dose into 3 smaller doses and take last 1/3 or 1/4 of daily dose at 8-12 hours before test

Many people find it much better to split dose into 3 doses per day at roughly equal 8 hour intervals

Have you tried or are you on strictly gluten free diet

okaykay profile image
okaykay in reply toSlowDragon

I eat very little gluten, usually by accident. Dairy I do use. I am starting to dose 3x daily on 45mcgs.. Thank you for the 8 hour dosing information. I was gonna do 7.

I know it shows way lower going 24 hours, but with seeing a new provider I didn’t want to scare him and have him lower it. It’s hard to go through everything all over with someone new, but he listened to me and had read all my chart info from my deceased doctor. It was a great visit. I am not increasing anything just spitting the dosage. He was very interested in all my knowledge gathered through my journey and understood everything. One more doctor in the know that TSH is not a factor if you’re not having HYper symptoms. Thanks again for your knowledge and responding. 💛

All that a blood test will tell you if you take T3 only is what your blood level of FT3 is after x hours, in your case, after 28 hours. That's your main problem right there - you've left far too long after your last dose. Since T3 has a half life of around 6-7 hours, after 28 hours it will largely be gone. This isn't really telling you much at all, what you DO need to do is keep track of how you feel i.e. symptoms and signs, your BP, heart rate and resting temperature. If you can, get hold of Paul Robinson's excellent Recovering with T3 book which will give you all the info you need.

okaykay profile image
okaykay in reply to

I ordered the book you referenced. Thank you. I do fast and skip my morning dose of t3 for my labs. I completely understand what you are saying and it makes sense. However, I don’t want a drop in my dosing if they get my labs at peak time and think I’m hyper. (Same office different provider.) My TSH co concerned him today, but I held out a steady hand and said “The TSH is fine suppressed, that’s normal.” I feel much better than a month ago and hadn’t had labs in over a year, as I felt fine. When I need adjustments, which happens it just comes out of nowhere. Im sure you know from experience. I don’t convert T4 at all, not even a little bit. I spent 2015 to 2019 researching information on my own. I was on 100 mcg of T4 and felt extremely unwell. My doctor died of Covid in early December and he was the one that listened to me and ran every lab I asked for. T3 was the answer and he was willing to take that journey with me. I was blessed to have him for 18 years, and since

2015 we learned a lot together about my crazy thyroid disease. Mine was the first script of T3 hormone he had ever given. Thank you for your response and for the great book recommendation. I had not heard of that one. I read his story online and immediately ordered the book. Hopefully, the print is large enough for my crazy vision. I could not find it for my kindle app. Be well! 💛

okaykay profile image
okaykay in reply to

I received my book today. Thank you for that recommendation and for your comment about my labs. I used to take a nightly dose of T3 when I was on levothyroxine in the morning. Brain fog.! You quite possibly saved me from the effects of to much T3. 💛

in reply tookaykay

So glad that's helped! If you are on Facebook, Paul Robinson has a group there, The Thyroid Patient's Manual. He answers questions that arise from reading his books. :)

okaykay profile image
okaykay in reply to

Thank you so much! I will check that out. I read a lot today. Very interesting information, especially on supplements. Strangely, I asked for test adrenal insufficiency, before reading his information on it. Many tests were ordered I just have to go have them. Again, thank you! 💛

jsy_girl profile image
jsy_girl in reply to

I don’t think T3 does have a half life that low. I’ve read varying things on this forum but it’s mostly 23 hours or 1 day although have also seen 16 -18 hours.

This study says

Studies reported by Nicoloff and colleagues in 1972 calculated a half-life of T3 that varied with thyroid status (8). The mean half-life was 0.63 days in 7 hyperthyroid patients, 1.0 day in 8 euthyroid individuals, and 1.38 days in 9 hypothyroid patients.

ncbi.nlm.nih.gov/pmc/articl...

So it seems to vary depending on your thyroid status which is interesting

okaykay profile image
okaykay in reply tojsy_girl

Yes it’s very interesting. Thank you for the info. I’ll see how I do on 3 x a day. Hoping it makes a difference. I have labs ordered for every hormone in the body. I just have to get them done. Maybe they will shed some light on what threw me off. I know adjustments need to be made occasionally. Again, thank you! Be well. 💛

tattybogle profile image
tattybogle in reply tojsy_girl

Very interesting about the variable half life of T3 , never heard that before , thanks. I'll have to get my head round what that might mean in practice. but at first glance it looks like 'the more you have , the faster you use it/get rid of it'

I wonder if this also applies to higher doses/ fT3 levels in treated patients , or just 'truly hyperthyroid ' situations.

Off to read it properly.....

jsy_girl profile image
jsy_girl in reply totattybogle

Well I’m glad I’ve been able to bring something to this forum 🤣 I assumed everyone knew - I wanted to find it out as was creating an excel model to work out at what point I expected to be able to increase my T3 dose based on how long it would take for my serum T3 to stabilise. GEEK. I’ve no idea if it works like that but it was giving me some way of taking control over the symptoms I was experiencing and need to introduce slowly which was going against my high levels of impatience.

Could it be that in the example of hypo patients where Ft3 is a finite resource that it takes longer for the diodinase to decide where is the most important and high need place for it to go. Again I’m making it up and I might have misunderstood what I have read and learned so far.

In a hyper patient it maybe gets swept up quickly as it’s at max saturation and turned into reverse t3...? I’m guessing...

tattybogle profile image
tattybogle in reply tojsy_girl

Ha ha , yes Thyroid Geekyness...it's way of taking back some control of the situation, My brain cogs are going round rather slowly this morning.... but so far i'm loving your theory of " Indecisive Deiodinases "

And i agree with the "shovel it into rT3 quick , there too much already" idea.

jsy_girl profile image
jsy_girl in reply totattybogle

Haha great. If you do read it and have any thoughts on it be great to hear them :-)

Every day is a learning day with the thyroid for me

tattybogle profile image
tattybogle in reply tojsy_girl

Don't hold your braeth , todays thought's so far involve "realising i've been watching a pigeon on a roof for an hour" , and "i really must go and have a wash"

jsy_girl profile image
jsy_girl in reply totattybogle

😂😂 I’m not much further ahead. I made breakfast. And sat with the news on and took 0% of it in. And then I thought I should get dressed and instead am now sat, in a different place, thinking there isn’t really any hurry...

tattybogle profile image
tattybogle in reply tojsy_girl

Yeah , well we're busy arn't we , solving important scientific concepts .... is it too soon to have brandy coffee, or do i have to wait till after midday ?

jsy_girl profile image
jsy_girl in reply totattybogle

For sure! Ha ha it’s really made me giggle.

I mean to be honest, time is only a concept too... and it’s Sunday. (Checks that it is actually Sunday)

I think that’s a perfectly splendid idea. If only I could tolerate dairy, I’d have a baileys one!

tattybogle profile image
tattybogle in reply tojsy_girl

Yes . i agree with you theory about it probably being sunday today... if it wasn't sunday somebody would have come and bothered me for something by now.... ooh...if i have a brandy coffee.. i can say i can't drive anywhere even if they do want chauffeuring somewhere :)

jsy_girl profile image
jsy_girl in reply totattybogle

Very cunning!!! 😆

okaykay profile image
okaykay in reply tojsy_girl

Your link was very informative. It would be much simpler if we were all the same, but then again that would be boring, I suppose. I was reading your link at 3:30am in the USA. GEEK 👊🤣. I had great plans for today, but I’ve sat on my sofa wrapped in a blanket being a geek and freezing. Pondering 🤔 information and waiting to take my second dose of t3. 🤪

jsy_girl profile image
jsy_girl in reply tookaykay

I’m glad it’s not just me!!! Our inherent mistrust of the system has turned us all into student (armchair) endocrinologists 😂

okaykay profile image
okaykay in reply tojsy_girl

Oh it’s not just you. You are in great company, I promise. 😂. I have determined endocrinologists are for everything, but the thyroid.

Cat013 profile image
Cat013

How do you feel? If you still have symptoms then you could increase it. I’ve been on a t4/t3 journey since December. I started on 5mcg twice a day and bluntly it did nothing for me (I’m a poor converter). I’ve increased a fair bit since then (every four weeks) and am now on 50mcg. I take 25mcg twice a day. I wake up a little achy again so I think I need three doses. I dropped to two because of splitting the tablets. Still never had the wow feeling some get but feel a bit better. I know it’s still not enough though. I started to panic thinking omg so many people are only on 5mcg and I’m on 50! That must be terrible and I must be over medicated. So I researched it further and found many people are on 100mcg or more so I calmed down a little. It shows how different we all are. The only thing I am terrified of is that my TSH will be undetectable which is the only thing my endo won’t allow!! And I was 0.02 at just 10mcg!

If you know the signs of over medication and you don’t feel well still then you could try adding a little more.

I’m so sorry to hear about your doctor. Sending love xx

okaykay profile image
okaykay in reply toCat013

Thank you about my Doctor. Good ones are hard to come by. At least the ones that will work with you and not tell you your labs are fine so you’re all set. I got up to 100mcg of T4. I had labs every six weeks. The first few labs showed decent numbers after T4 being increased (I got a temporary bounce in labs only) from 50 to 75 then 100mcg, but I felt horrible. I worked by the grace of God only and was in bed the rest of my days. I was freezing and every joint hurt and my feet were excruciating. It was all trial and error from 2015 to January 2019. I had labs before my visit in January of 2019 and on 100mcg of T4 my free T4 was 0.7 and FreeT3 was 2.57. ( same rage was used as above. He was going to increase T4 again, but I went armed with printed info from multiple places, but mostly from this group and the writings shared by many wonderful doctors about T3 only for people not converting. I left that day with with my T4 dose lowered to 75mcg and T3 added to my hormone regimen. I started on 10 mcg split morning and night. Six weeks later lab looked better, but I still had hypo symptoms so I added another 5mcg of T3. Am and PM. I had labs again in seven weeks and I was feeling really good. My TSH was O.01 and free T3 was 4.20 and FT4 was 1.6 (O.8 to 1.8). At that time I was taking it in two doses (morning and night) hence the level of T3 being significantly in upper range. I felt like me again, for a minute. 🙃. Eight weeks later with no change in dosing, my labs went haywire. My TSH was 2.49, Free T4 was .07 and free T3 2.59. 😳 That was in January of 2019. My Doctor was going to increase the T4 back to 100mcg but I refused and asked to be on T3 only, because of conversion issues. He understood and appreciated all the research I had done, increased it from 20 to 35mcg and I dosed up 5 mcg with labs every six weeks. When my dose got to 35 mcg my labs looked great. TSH was down to 0.02 my FT4 was .07 and my FT3 was 4.10. I was on that dose for almost 2 years. I started feeling hypo symptoms in November 2020, but had appointment coming up January 4, 2021 and my Doctor died from complications due to Covid in December . I had thyroid labs ordered and did them at beginning of January 2021. TSH was 0.09, FT4 with no hormone was 0.2 and FT3 was 2.69 (2.57-4.43) In January the FNP in the office was seeing patients virtually and added 2x 5 mcg to the 35mcg I’d been taking. I tested Tuesday and my TSH was 0.02 and FT3 with 24 hours of no dose was 3.17. We didn’t check the FT4 this time. We left it at 45mcg doing 3 doses a day. The levothyroxine was making me worse and not allowing the T3 to do its job. It was working against me big time. May I ask what your thyroid levels are and how much T4 you currently take? Are you in the USA?

Cat013 profile image
Cat013 in reply tookaykay

Hi. Sure I’m on 100mcg of levo and 50mcg of t3. I suspect I’ll have to drop some levo at some point to keep my endo happy. Levels are TSH 0.02 fT4 14.9 I think and fT3 5.01. This was on my old dose though. I don’t know what 50mcg has done to my levels. I’ll find out in four weeks!

When I went from no t3 to 10mcg a day it only shifted my ft3 from 4.97 to 5.01 so on that basis I can’t see 40mcg more pushing me over range but do worry a high dose may make my TSH undetectable. Which is where my endo draws the line.

I’m in the UK 😊

Your fT3 is still quite low for your dose too. How do you feel most importantly?

okaykay profile image
okaykay in reply toCat013

I feel better than in December and just started to split the dose 3 x a day. I use 5mcg tablets because it’s easier to add or subtract (although I’ve not had to subtract) This forum has helped me so much. I knew that T3 wasn’t active more than a day, but hadn’t even thought about that affecting my lab values. I’m glad I posted in here this week. Brain fog sucks! Today is my second day of dosing 15mcg of T3 3x a day. I hope to feel a difference in my evenings. That’s when I was feeling the most symptoms again. (Lethargic, cold, brain fog, and vision issues) I’m not familiar with your labs ranges. Do you still have hypo symptoms? Mine never went away until I stopped taking Levothyroxine.

Cat013 profile image
Cat013 in reply tookaykay

okaykay Apologies for the delay. I could have sworn I replied 🙈. Good old brain fog!!

How’s it going on the x3 dosage?

Yes I still have symptoms on 50mcg and 100mcg of levo.

I have pressure in my head and horrible tinnitus which came on after my diagnosis when on levo only. I still have brain fog and some joint pain. Still can’t lose any weight unless I starve myself. Still have some constipation although better. Feel miserable a fair bit still but do see an improvement for the first couple of hours of taking t3 . However I do now feel a slight improvement so I know finally I’m on the right track 😊

I emailed my endo asking for an increase from 30 to 50mcg as I was fed up of feeling so crappy and got no response. So after a couple of weeks went up anyway. He’s literally just replied saying no don’t increase until next blood test / consultation! Oops. I’ve just confessed I did. So fingers crossed he won’t boot me out 😂🙈. 25mcg only Increased my ft3 from 4.97 to 5.01 so I very much doubt I’ll be particularly high! I’m more worried he’s going to reduce me if my TSH becomes undetectable.

Me too with evenings although interestingly on a higher dose it’s not as bad.

Ranges are from the UK.

Hope it’s going ok. It’s interesting you mentioning levo being a cause of some symptoms. I think I want to stop it or lower it just to see if it’s really causing my tinnitus and head pressure 🤔. Xx

okaykay profile image
okaykay in reply toCat013

You’re fine Cat013. I totally understand brain fog. I feel so much better on a split dose of T3. My TSH was 0.01, but I have no hyper symptoms. Hands are steady while cutting and coloring hair.

I was blessed to have found this group and have a Doctor that was willing to work with me and also learn from me and this group. I miss him a lot.

I did get the book “Recovering with T3” by Paul Robinson. It is worth the read. I am going to get his other books also. You should get a copy. It’s packed with great information.

I pray your Endocrinologist treats you and not your labs. Paul’s book talks about that too. I’m glad you are feeling a bit better with increased dose of t3.

Levothyroxine made me so much worse. I know that’s not the case for everybody, but for me it was. My labs looked good sometimes, but I felt awful.

I just had labs today for adrenal insufficiency and female hormones. I had a complete hysterectomy in 2001.

The FNP-C in my Doctors office ordered those. My TSH made him nervous too, but I just held out my steady hand and said “Im fine, trust me it’s supposed to be suppressed Hashimoto’s. I hate the TSH golden rule that so many doctors go by. 🤦‍♀️

I will be thinking of you. Keep in touch.

Xx

Cat013 profile image
Cat013 in reply tookaykay

The more people talk about levothyroxine the more I want to trial t3 only. But I need my endo to match my t4 dose drop with the t3 and then also give me another increase. Last time he just matched the t4 drop with t3 and missed out any increase and I felt horrific by day three. I’m extremely sensitive to t4 and felt better going back up again. But like many I think trial and error is the way forward.

Can I ask how did you know it was the levo making you unwell? What were your main symptoms? For me it’s the head pressure and tinnitus that only started when I went up to 75mcg of levo. It may have been a coincidence. It definitely makes me feel better. But if it’s causing those issues I need out!! It’s horrible

I hope your tests went ok. Fingers crossed for a positive outcome 🤞

Quite a few people have mentioned his book. I’ll take a look thank you ☺️.

I’m fast running out of patience. I’ve only been diagnosed a year and tbf I’m now on t3 and I’m getting there. But I can’t stand the remaining symptoms I have for much longer. Especially this weight I’m carrying with summer approaching. They’ve been here for many many years and I’m fed up of them now!!!

Xx

okaykay profile image
okaykay in reply toCat013

I went on T3 only in spring of 2019 not January. Sorry for my typo. 🤪

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