I know it's been asked before but I value your advice as I so want to get this right this time. I saw endo at QE yesterday and she's agreed to let me trial T3 again wahoo. I currently take 100mcg levothyroxine 5 days week and 75mcg other two. She said drop to 50mcg daily and start 5mcg T3 three times a day. From reading here I know to start slow but when I asked she said just start!! Is she setting me up to fail? I asked what my last bloods were in Nov as not had written letter from last appt, I assume ranges are the same as previous test, the T3 has risen, no idea why, is it time of day or because I had eaten breakfast hours ago? Blood taken pre lunch, not fasted but no levo for well over 24hrs.
Tsh 0.18 (0.4-4.9) -4.9%
FT4 13.7 (9-19) 47%
FT3 4.1 (2.6-5.7) 48.3%, was 3.1 in July.
So do I drop to 50mcg levo daily, which is half my usual dose for a week then add 5mcg Lio with it for a week or two before increasing please? Just to add, I did ask her is it normal to have the forgetfulness, brain fog, low mood I get? Response was, no, not on your numbers. Left me feeling yet again that it's all in my head, maybe I've got early dementia or I really need those antidepressants the doctors suggest, I really hope not. Thank you as always.
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Considering your FT4 and FT3 are so well balanced I'm surprised your endo has agreed to adding T3 and not just increased your dose of Levo (but I haven't looked back at previous posts to see your back story).
With that FT4 level I would not reduce your dose of Levo, it's already only 47% through range, taking T3 will lower it so reducing your Levo dose would lower it even more. Dropping your dose from 650mcg per week to 350mcg is, quite simply, ridiculous. I think these doctors are on auto pilot when it comes to T3 and just rattle off a standard protocol without taking any notice of current levels.
As for T3, you don't know how much you are ultimately going to need to we suggest staring slow and gradually build up. 5mcg only for the first couple of weeks, then add a second dose of 5mcg. This may be enough, who knows, especially looking at your levels of FT4 and FT3 on Levo only.
the T3 has risen, no idea why, is it time of day or because I had eaten breakfast hours ago? Blood taken pre lunch, not fasted but no levo for well over 24hrs.
All our thyroid hormones fluctuate throughout the day, see image below. Eating breakfast can affect TSH (certain foods/drink can lower TSH) but wont affect FT4 and FT3.
Last dose of Levo should not be "well over 24 hours" as this will give a false low result, it should be as close to 24 hours as possible so you should alter timing of dose the day before.
When testing once you've added T3 remember to split the dose of T3 the day before and take last part of the dose 8-12 hours before blood draw.
Thank you for your reply. I have to admit I'm surprised she offered me T3 on those results, my previous results are in earlier posts so won't repeat but MMH, taken in Oct as advised here, T3 was 3.2 and only 2.7% in range so quite a difference. I was unsure prior to last appointment whether to take levo that morning as it was 11.30. My tsh is low so I didn't expect her to increase levo but I am wondering if she wants to prove something. I agree endos seem to be on autopilot when prescribing and don't treat us individually.I really don't think I will need 15mcg T3 daily but will definitely titrate up slowly and see. Unsure now whether to reduce to 75mcg levo or the 50mcg as she said.
Unsure now whether to reduce to 75mcg levo or the 50mcg as she said.
I wouldn't reduce at all (and SlowDragon is saying the same). Your FT4 is already low, reducing your Levo will reduce your FT4 (and takingT3 will also lower your FT4) and many of us on combination thyroid hormone replacement don't do well with low FT4, some of us need FT4 and FT3 reasonably well balanced over half way through range. If you don't reduce your Levo and endo asks why, just be straight and say that your FT4 was already low and you didn't want to risk it going any lower and possibly making you worse.
Ok thanks, maybe I should just start with a little T3, I didn't realise it lowered T4. Just looking at when I was on it before and can see it was much lower when on it previously. So confusing when the consultant says one thing and you all, who have trodden the road before me say another.
Thank you, this is so confusing to my already addled brain. I haven't got the T3 yet as pharmacy had run out but I believe they are dispensing 5mcg capsules there at the moment which will be difficult to cut. I do have some 20mg tablets from a previous private prescription, maybe I'll start with them.I'm now 68kg, I take vit D3 (2,000) with K2, and magnesium daily. Tried Thornes basic b vitamins and couldn't get on with them, horrible metaic taste in mouth, bright yellow wee, obviously excreting excess. Last tested vit D 97.8 and folate 4.6 (a bit low) in Nov, ferritin raised 203 in Dec.
Thanks Slow Dragon, results in previous reply except B12 which is 527 so quite high in range, maybe I could just add folate, can you get that? Tablets I have are Thybon Henning 20mcg, used to cut in 4 ok. Maybe with T3 then 75mcg levo will be right
Before your imgination runs away with you you need to be able to compare previous labs with those above and ensure you are getting correct thyroid medication
Are you still seeing the same endo who spewed out this drivel?
I asked about my low T3 and she said it's not worth looking at as it's only a snapshot, she only looks at tsh as these numbers don't lie. I asked why I had poor conversion, she said she didn't believe in that either.
and
I did ask her is it normal to have the forgetfulness, brain fog, low mood I get? Response was, no, not on your numbers.
No wonder this endo can't help she is clueless!!
Well, if you were a machine numbers may not lie but as a human being with all the variations that brings to life numbers are only a fraction of the story. Clinical evaluation is also vital and you feel unwell with various symptoms that tell a story....of hypothyroidism!!
Did she ever ask,how you feel?
You are undermedicated!!
3 months ago your results were as follows , taking 100mcg levo 5 days a week and 75mcg the other 2 days
TSH 0.72 (0.27 - 4.2) 11.17% in range.
FT4 17 (12-22) 50% in range
FT3 3.2 (3.1-6.8) 2.7% in range
That low FT3 is enough to have most people on their knees
T3 is the active thyroid hormone and for good health needs to be available in a constant and adequate supply....your supply id not adequate.
The heart needs a lot of T3, as does the brain, ....insufficiency affects both.....hence your symptoms
Current labs on same dose...
Tsh 0.18 (0.4-4.9) -4.9%
FT4 13.7 (9-19) 47%
FT3 4.1 (2.6-5.7) 48.3%, was 3.1 in July.
So what has changed?.
Was testing done under the same conditions as advised by TUK?
On the face of it your Frees are now balanced so showing no sign of poor T4 to T3 conversion.
I think you would benefit from retesting, at about 9am to get highest TSH, 24 hours after last levo,dose and having had no food and driks beforehand ex water
However both are fairly low suggesting more levo is required, I would start by increasing levo to 100mcg daily which, if conversion is actually good, should also raise FT3.
A test after 6 weeks on a steady dose of 100mcg levo would prove the point....or not....and also point to dosing requirements.
If you are going to add T3 there is no need to reduce levo because the T3 will naturally lower T4...and add the T3. low and slow.
Personally, as I said above, I would rather start by increasing levo
I doubt you have dementia or need antidepressants.....just correct thyroid treatment!
Thank you so much for your common sense reply, I needed that. Yes same endo, a prof at the QE. No she didn't really ask me, just stated things from my notes and said I had phoned her secretary very upset before Christmas, which I had, hence appt yesterday instead of Feb. Then she said I could have T3, I felt dismissed like a naughty child even though my children are older than her. Last blood test was taken at the hospital after my appt so after midday, I had eaten breakfast but omitted levo. The previous test MMH and as taken 07.00 as advised on here. I really don't know what is going on to see such a difference, nothing has changed otherwise.
I wish I had done a home test before my appt but I can't change that now. I've dropped levo today to 75mcg with view of starting T3 5mcg with morning levo when it arrives as none in hospital pharmacy. I do have some 20mcg from previous private appt but wanted to get it on NHS hence my current situation.
Wish I hadn't asked for blood results now, felt happy to start T3 again with previous results.
Sorry to be so indecisive but like many, I was brought up to do as advised by medics and though I know different from this site I'm still struggling to make a decision.
Do you know if you have thyroid autoimmune disease aka Hashimoto's?
If positive then hormone levels can flucuate....just a thought. Timing of test is however also relevant
Hopefully your intended protocol with T4/T3 helps. ....but reducing levo may not be helpful. It will take time and patience....there is no quick fix for thyroid disease
It can be very difficult to step away from "authority" so don't apologise, just be sure you are doing what you think/feel is best for you. I had to make some very controversial decisions about my thyroid teatment but luckily my GPs listened to me and eventually understood what I was doing. They were not able to offer what I need and now leave me to self treat....far from ideal I have no NHS safety net....but I don't regret my decision
I'm aged 77 and "they" all look like youngsters to me... and younger than my sons. I was brought up with the words "Doctor knows best" ringing in my ears and mostly they did.....but thyroid disease changed that!
Long story, in my bio... eventually I had to go off piste and now self medicate with high dose T3....had I followed endo's advice I may not be here now.
Listen to your body, it will tell you when something is wrong... and right now it needs help by way of more replacement hormone. You've had a tough time maybe it's time to break out from the box they try to fit us all into....and which we don't comfortably fit into!!
We can't be calibrated to a set point like a machine....we are human and we are all diferent with different needs. Modern medics don't seem to understand that or be able to look away from their computer screens for a way forward
Thanks again DD for your honest reply and certainly not a rant in my eyes. No, not Hashimoto's, I was hyper 2007, 2 lots meds but it returned, diagnosed Graves so Rai in 2009 and also TED. Normally I self test blood, it was just the last 2 at hospital and again 2 days ago, I couldn't control. Yes I think it's time to break away from their rules and tick boxes, I've had little or no support from any gp to date. As a retired nurse I'm probably programmed to a point too but have learned masses in last 2 years. How will I know if I need to up my levo again, bloods in 6 weeks, feel no better? What a minefield.!
I've been on this same dose, since last March when T3 stopped hence I was really surprised with last T3 result, it's always been in bottom 1/4 of the range. God knows why it's decided to pick up now, just to fry my brain a bit more. I'm keen to try T3 again, been battling for it for ages now, I feel I probably need it having atrophic thyroid (private scan). I will definitely try slowly as rushed it last time so ectopic heartbeats were blamed on it, still got them so it wasn't that and cleared by cardiologist.
Thank you for your encouragement, yes, I can and must do this, no one will do it for me will they?
How will I know if I need to up my levo again, bloods in 6 weeks, feel no better?
Basically 2 things...
How you feel....you should feel well when yourtherapeutic dose is reached!
Your labs...Frees should sit roughly 75% through ref range
There is an element of trial and error here because we are all so different with different needs.
"Listen to your body"....an old medic friend used to continually say this!!
With levo only, which is how I would start first until FT4 reaches top of range ....
It is common when increasing the dose( slowly and by only 25mcg) to initially feel better then after a fdays symptoms return. It's understandable to conclude, therefore, that the levo isn't working ...but what is actually happening in that case is that initially the body feels better with the increase and shouts " Woopee, I'm fine again!" ....then after a while symptoms return and the body then signals, "actually no I don't....I need more!"
So, we add another 25mcg levo...wait 6/8 weeks, test again and review symptoms and dose
Repeat if necessary.
If adding T3 to T4....
I would add 5mcg T3 to 100mcg levo wait 2 weeks.
If no change add another 5mcg
Repeat until you reach 20mcg ( unless you feel well on a lower dose) then wait 8 weeks and test.....must include both FT4 and FT3....results( post them) will point the way forward
Ignore TSH it means nothing after replacement hormones are added....it's not a marker to guide dosing. Science underlines this.
It's not a quick fix....I learned the hard way!!
Re ectopic heartbeats....I suspect your low thyroid hormone level may be responsible...not a faulty heart as cardi confirmed. Correct medication should help.
GP discovered I have a heart murmur....she panicked and blamed my high dose T3....sent for heart scan....heart healthy....red herring....something I must have been born with to do with a ....darn forgotten....a benign flap when heart valve is working I think!!. I'm clearly no medic!!
Finding this forum saved me.
Your journey to recovery has started.....keep pedalling!!
Brilliant explanation thank you. I've already dropped to 75mcg since Monday thinking that was a compromise to the 50mcg she prescribed. I think I'll start tomorrow with adding 5mcg T3 which I have, as the hospital prescription hasn't arrived yet, then wait to increase as you say. Sorry, I know you're suggesting add to 100mcg but I'm nervous it'll all go boobs up again. I somehow think I'll only need 10mcg day, god only knows why I've got that idea, but I'll definately take it slowly this time. As I had rai I do feel I need added T3 not just levo, again no idea why just a guy feeling. I too believe my ectopics are caused by low T3 but neither gp, cardiologist or endo agreed and wouldn't even look at research I'd taken with me. Arrogant isn't it to always think they know everything, no hope of learning or improving if you're not open to other people's suggestions. Apparently I've got a bit of a faulty flap too, only found out when I read heart scan results myself as cardiologist said it was fine, blooming fibber, but like you nothing to worry about for now.
So glad you're better now, I actually feel more confident today that I can do this so thanks again for your support. Wouldn't it be lovely if we could arrange some sort of meet up for those who want to, I'd certainly be up for it.
Thank you again, T3 just arrived, they're capsules but 6 boxes of them! Says in info, if you can't swallow capsules, tip contents into 20mls water as it dissolves well. That sounds ok if I just want to add 2.5mcg as just draw up 10mls and save rest for next dose.
I think the 10ml Baggiesfan refered to is the amount of water used as a solvent....not half the contents of the capsule.
Ah, thinks...are you assuming she would dissolve the full content of the capsule in 20 mls, draw off 10 mls, and retain the unused dissolved dose for the next dose. Agree, not a great idea!
Would the remaing half of the content not keep until the next dose if stored carefully back in the capsule....not ideal but maybe enough to help start on a low dose.
Thanks, thinking about it, it was a stupid thought as it's impossible to judge how much is dissolved in each ml let alone how stable it is stored. I was thinking dissolve content of capsule in 20mls water, use a syringe to draw it up then squirt 10mls on a spoon to take. Silly me, well hopefully I'll get my brain back one day sorry.
No it wasn't stupid....and I misunderstood your plan I think...it's sometimes difficult to know what is best to do when its all new( ish)...I've made more rediculous decisions...it gets easier
The capsule content is a tiny amount of powder. Although I have not handled them, I am sure the capsule is nowhere near 10ml capacity.
We don't really know much about what happens to a solution of liothyronine in water if kept for hours. The advice for tablets was always to dispose of any that you don't use immediately! But whether that was based on evidence that something bad happens - or lack of evidence such that no-one knows - I simply don't know.
Thank you, I initially thought of emptying the powder out the capsule into a small container and adding 20 ml water, as suggested in the patient information leaflet if you can't take the capsule. My silly idea was to then draw it up in a syringe and just take 10mls, ie 2.5mcg T3. I hadn't thought it through as to how stable the remainder would be or how long it would keep. Not a problem, I'll leave it as it is in the capsule.
Indeed, I think you thought it through quite well.
When they gave advice for dissolving/dispersing tablets, they suggested that syringe approach. But they had the advantage of having tested it - something we can't readily achieve at home.
Then they said to throw away the unused portion and NOT keep it.
Thanks helvella, no they didn't suggest the syringe, that was just me lol. The PIL said to just mix with water and drink it all, which obviously means you will take all of it however it has dispersed or dissolved. No worries I'll not be trying it as it could be all or nothing my way.
My numbers were similar to yours when I started t3. Started slow, I had been on 125 levo and dropped to 100 but over next three months ended up adding t4 back in. I cut thybon in 8 so 2.5 mcg morning for week and then 5mcg for a week, etc. I’m now on 10mcg and 125 levo. Good luck. I find my gp doesn’t read endo letters so he now prescribes my t4 and t3. I upped it without endo to 10mcg t3. She had a huff on phone, said numbers were acceptable so keep on that. GP still prescribed 5mcg I just order more often awaiting the phone call saying I’m irdering too often. 🤷♀️ So don’t drop, too much order levo as usual as your gp prob won’t notice. Good luck.
Thank you Hay2016, glad someone else was similar as I don't seem to fit a normal pattern compared to others that I read here. I've dropped to 75mcg from 100mcg, not to 50 as she said so a compromise but others far more knowledgeable than me have said leave it as it so I'll see. She prescribed 3 months of 50mcg from hospital pharmacy so I collected that, thankfully same manufacturer as I usually have but not named as Eltroxin so I'll be cutting them up for a bit. Awaiting delivery of T3 as none available but as I said I do have some thybon, I think hospital issuing 5mcg capsules which is awkward but wait and see. She said to take 5mcg T3 three times a day but I'm definitely not rushing into that. How did you know to add the levo back in, was it from your bloods or just gut feeling? Hope your gp's don't notice for a bit but your argument there is you feel better on that dose. Thanks for replying.
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