Positive t3 experiences?: How has t3 changed your... - Thyroid UK

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Positive t3 experiences?

Angie10116 profile image

How has t3 changed your life for the better? I’m getting mine delivered soon and I’m looking for some hope. Thank you for all replies❤️

99 Replies
SeasideSusie profile image
SeasideSusieAdministrator

Angie10116

There are many positive stories from members who are taking T3.

There is nothing to tell us anything about your thyroid journey, what type of hypothyroidism you have (primary, secondary, autoimmune), if you have been on Levo and how you got on with it, whether you are a poor converter, what your current test results for TSH, FT4 and FT3 are and whether your nutrient levels are optimal.

Is your T3 prescribed? NHS or private endo? What dosing regime has been advised? Many endos are totally ignorant of how T3 should be started.

If you would like to share your story and post your latest test results, with their reference ranges, it will make it easier for members to comment.

I added T3 to my Levo in 2016 after many years of being unwell and discovering generally poor nutrient levels and poor conversion. It has taken years of tweaking doses of Levo and T3 to find the right balance of them for me to say I now feel optimally medicated thyroid-wise.

Hi! Thanks for your reply!

I had RAI treatment for hyperthyroidism ( graves) in April of this year. Then I was diagnosed with hypothyroidism with a tsh of 60. I was taking 50mg of Levo for 2 weeks, then moved to 100mg for 4 weeks, and 150mg onwards. My doctors had no idea what they were doing because I ended up being over treated, and ended up with a tsh of 0.20 and T4 of 35.6. My doctors didn’t take any of my symptoms seriously ( really bad brain fog, no concentration, ocd symptoms, really bad anxiety, depressive symptoms, hair loss and a lot more!). I went privately to see an endocrinologist and he suggested we stop Levo for 2 weeks as I was being over medicated. My results as of this week are:

TSH: 35.03

T4: 7.8

T3: 2.5

I’m now on 50mg of Levo and will be on 20mg a day of t3. I have a private prescription and I’m working on getting it sorted. I’ve had all of these symptoms for nearly 3 months and Levo is 100% not it for me. I’m constantly so tired, feel almost tipsy/ drugged from the brain fog and I just feel a sense of unreality everyday. Also I can’t sleep without waking up multiple times a day!

SeasideSusie profile image
SeasideSusieAdministrator in reply to Angie10116

Angie10116

Thanks for posting your background story.

I was taking 50mg of Levo for 2 weeks, then moved to 100mg for 4 weeks, and 150mg onwards.

I think the doctor who did this was totally clueless about how to treat hypothyroidism. It needs 6-8 weeks for levels to settle after starting Levo or any dose change, so he obviously went far too quickly.

I went privately to see an endocrinologist and he suggested we stop Levo for 2 weeks as I was being over medicated. My results as of this week are:

TSH: 35.03

T4: 7.8

T3: 2.5

I’m now on 50mg of Levo and will be on 20mg a day of t3.

Unfortunately, I don't think your endo is any better. It's far, far to early to even consider T3.

Unfortunately you haven't put the reference ranges for your results (these are essential as ranges vary from lab to lab) but I'm assuming that your FT4 and FT3 are below range (assuming they are FT4/FT3 - Free T4/Free T3 and not Total T4/Total T3 - again it's important to know).

What your doctor should be doing is gradually increasing your Levo, every 6-8 weeks until your TSH reaches 1 or below. Then look at the FT4 and FT3. If FT4 is high in range and FT3 is low in range that's when you consider the addition of T3 to your Levo.

However, before adding T3 it's essential to know that your nutrient levels are optimal - no thyroid hormone can do it's job properly unless they are. So you would need to test

Vit D

B12

Folate

Ferritin

If they are not optimal then any low levels or deficiencies should be addressed before adding T3.

I think if you add T3 now you are going down a wrong path and may make things worse.

The hospital told me to move up so quickly in Levo, but now I know that it was irresponsible of them.

Actually I pushed my endo for t3 because I’ve been on T4 for 3 months and my brain fog is still so bad that I actually can’t work. I’ve been off of work for 2 months and I can’t afford to be off any longer- that’s why we’re moving so fast. Also, I can’t drive or live a normal life, I’m really struggling. Unfortunately I don’t have the time to wait to have my levels optimal. Because my gp has messed up it’s me for so long, I simply can’t stay off of work any longer. And I know that t3 helps a lot of patients with brain fog, so I’m hoping it helps me too! I’m very desperate at this point.

My vitamins are all optimal. I’m b12 definitely due to anemia but I’ve had 6 shots and have to have a blood test in the next few weeks to see if I need more.

I’m actually not sure if it’s free T4 or just T4. Honestly I don’t know the difference myself !

SlowDragon profile image
SlowDragonAdministrator in reply to Angie10116

My vitamins are all optimal.

Please add actual results and ranges on vitamin D, folate and ferritin

I haven’t actually got them, but I will get them tomorrow hopefully as I need to speak to the doctor anyway.

SlowDragon profile image
SlowDragonAdministrator in reply to Angie10116

Medics only test and treat deficiencies

On levothyroxine, and especially on T3 we need optimal vitamin levels

Please stop and slow down! Listen to SeasideSusie she knows what she is talking about. T3 is hard to manage for many of us. I've been slowly introducing it since November last year having been in Levo for several years unsuccessfully due to a conversion problem. But it hasn't been a life-saver for me. In fact it's making me worse. You have not given Levo half a chance yet. You can't dictate the timescale here. You are not in control of it sadly. If you rush it you will just be worse.

The thing you need to do first is get copies of your test results on paper from the hospital/surgery and keep hold of them. Share them here, with reference ranges. You also need a Levo dose increase of 25mcg immediately (50 is only a starter dose and makes a lot of people feel worse) and then in 6-8 weeks do another blood test and increase by another 25mcg etc. until you feel well. You will probably feel a lot better once you increase the dose another couple of times so please do that. Don't rush to T3 because it's going to make things impossible for you. Your knowledge base isn't robust enough yet and your Endo seems clueless.

Well unfortunately I’ve already been off of work for 2 months and I can’t drive due to brain fog. I’m unable to wait any longer or I will be fired. T4 has only made me feel worse than before I had treatment. I appreciate the support but that’s not the purpose of the original post as you saw. I’m not looking to be told what to do by someone who isn’t an endocrinologist. So again, thank you for your support, but I need to change something ASAP or I will legit lose my job. And if t3 could help me think clear and not see the world as if I’m tipsy 24/7, then I’ll take the risk.

None of us are ends! We are people who have been through hell and don't want to see you do the same. I've lost 9 years of my life to this. I have just about managed to keep my business going, nothing else. I can't remember the last time I did any housework. And I've seen it all before here. You can't rush it. It won't let you. You don't know what you would feel like on 75 or 100 or 125 Levo because you haven't tried it.

I could just let you have positive responses and rush blindly into this without warning you. Perhaps I should have. But I'd rather you succeeded.

Hi, I hope you’re well. I’ve decided to take your advice and give Levo another go. I’m going to try 100mg again starting tomorrow and give it more time like you suggested. Have you got any more tips?

I'm glad you are willing to give it another go. Are you taking anything at all at the moment? Today?

If so, what is it and how much are you taking?

I’m taking 50mg Levo and 20mg t3. The t3 hadn’t changed things, just made me more tired and foggy

OK. This is a bit different. Yes, taking T3 can do that because it lowers your TSH, which lowers conversion of T4 to T3 and it can lower your T4. It has a major impact on my FT4. Massive.

So I would now suggest you keep taking the T3 and increase your Levo to 75 and hold that for at least 4 weeks. Preferably retest after 6 weeks because you only recently added the T3.

If you are taking all your T3 in one go, I would suggest splitting it. I have been reluctant to try taking mine 3 times a day because it was interfering with meal times. But I've just started taking it on a new schedule and so far I'm feeling better with it like this and I've avoided meals.

I now take my levo and 15mcg T3 at 7am. Then a further 10mcg T3 at 12 noon and a final 5mcg at 6pm. I'm surprised how well this is holding up so far. At the end of last week I was melting down because I felt so awful and thought I needed to reduce the T3 even though I know my blood levels are low. I had 1 day off T3 and picked up at 25 the following day on the new time schedule and then 2 days later I decided to go back up to 30 on the new routine. I can feel that my next move will be adding 5mcg T3 to the 6pm dose. But I have a few weeks to wait first. I will retest after 6 full weeks of T3 at 30mcg, so I need to allow an extra week for last weeks mucking about.

I take 125 Levo with this T3. So I definitely don't think you can give up on the T3 yet, but you have to get that Levo up a bit higher first.

Did you come up with that routine yourself? I’m glad that you managed to find a time that works for you. I can imagine that it’s quite awkward taking it 3 times a day, but I’m glad it’s working!

I've a long way to go yet, but I feel better in myself on this routine. Just no power to my legs yet. Slowly, slowly.

I admire how patient you are and how you’re staying so positive

Oh, it's been a long hard slog this damn hypothyroidism. I was fit, active, ran a business and a theatre company and never sat down. That all stopped around 8-9 years ago. I gained a load of weight very fast and a ton of anxiety. It's been horrible. For a while I tried to hide it and carried on. But I just couldn't keep up. I had to drop the theatre completely, which I miss so much. My last on stage performance was a few years ago now and was hard to do because of the lack of energy. I even suffered a totally incontrollable shaking leg at one point. I thought I was going to drop to the ground. It was scary. I positioned myself behind a handy sofa so that I could grab it if necessary and also to hide the shaking leg from the audience!

I've had various attempts with other meds because my GPs are clueless. I've got NDT and T3 wrong in the past due to inept doctors giving me bad instructions. This is why I am so keen for you to go slow. Levo doesn't really help me, but it doesn't mess me about like getting T3 on it's own wrong, or natural desiccated thyroid when I didn't know what I was doing with it. Levo is much more forgiving.

You’ve really been through it all! I’m so sorry that you had to give up theatre. It’s so disheartening when you’re out on medication that could potentially be life saving, but it’s done so wrong that you feel even worse than before ! That’s what happened to me with Levo. I completely disregarded it because I didn’t give it enough time, due to doctors orders!

I’m hoping that your leg is better now, that must’ve been very scary for you. The anxiety on top of that is horrendous also. The way your thyroid levels mess with mental health is actually unbelievable. Well don’t for staying so strong. You’re a true fighter

Thanks. That leg thing never happened again. It just passed through. It sure picked it's moment though.

Now my legs are weak and my stamina is rubbish. But my brain is alive, and working, which is a relief.

It most definitely is slowly with this condition. Next time, insist on longer between changes and blood tests. And you do know that you should book the earliest test you can get on the day and not eat or drink anything but water before the blood draw? Don't take your meds for the day until after you leave the medical centre and if you take any supplements with Biotin in them, stop it for a week before the test date.

Oh I’m very glad that it was just a one time thing! I’d give anything for my brain to work properly, but I know that realistically all I need is time. I’m hoping that you get to where you need to be soon, you sound like a lovely and genuine person.

Yes I’m aware that I need to fast and have the blood test ASAP in the morning 😊

I know it's frustrating as heck, especially when we have jobs we have to do to earn the money to live. But it's a classic case of the tortoise and the hare with thyroid issues. The tortoise wins the day every time.

Let me know how you get on. You can message me if you don't want to make a general post. Or tag me in a post. I'm routing for you.

You’re extremely sweet, thank you. I will definitely keep you posted. Thank you so much for your patience with me and best of luck to you 😌

You are welcome.

I re-read your first post. So I am going to assume you are currently taking 50mcg Levo a day?

If that is the case my advice would be to take 75mcg a day for at least 4 weeks and see how you feel. If you feel OK but still under, you could try 100 a day, but then hold and test after 6-8 weeks. I know you are keen to move things on, but even Levo can't be rushed. Doubling from 50 to 100 in one go would be harsh on your body and could sabotage your plans. So 75 first and then 100. Most would say hold 75 for 6-8 weeks and then retest, but I sense that might be too much waiting. So you can judge it by how you feel and if you feel you need another increase, try it. You can always drop back again.

75 definitely sounds like a good plan. My endocrinologist told me to stop t3 and start at 100mg of Levo tomorrow. Because the t3 has been making me feel worse overall, do you think I should stop the t3 for now and just see how I get on with the T4 alone? I feel like I started the t3 too high, at 20mg and that was 3 days ago.

Maybe I should take 75mv of Levo going forward and just keep the t3 off for now? I can always add it back in when my T4 dose is optimal? My endo wants to test my levels again in 4 weeks and I don’t want to go against what he’s saying too much with the t3. This is so difficult and frustrating!

Ah, so you only took a few days of T3? Yes, you started it way too high. You should have cut the pill into quarters and started with 1 quarter for 1-2 weeks and then if feeling OK add in another quarter and hold for a few weeks and then another quarter up to the full tablet. Then hold for 6 weeks and retest.

I'm afraid you endo doesn't seem that clued up on T3. For a start he wants to retest you too soon. And he should not have started you on a full 20mcg tablet. I'm not surprised you didn't get on well with it. It will either place you on the ceiling with fizzing nerves and anxiety or knock you out if it's too high. He set you up to fail.

So, what to do now? As you don't want to be too far off what he told you to do when you see him shortly, I guess you need to stop the T3 for now and increase the Levo. Or you could keep just 1/4 of a tablet of T3 in with the Levo and tell him at the time you see him. Personally I'd probably go for the Levo on it's own at this stage. You need to know how far you can take it and feel benefits before you add in T3 ideally.

I only started it 3 days ago! Yeah honestly I thought he was great at the beginning, but we all learn from our mistakes. He also told me to stop Levo completely for a week when I was over medicated, and then I went hypo within a week! I don’t understand why he didn’t just drop my dose back to 100 mg of Levo or 125 or something. He seems so dumb looking back at it. So I shall take 75mg of Levo starting tomorrow and see how I feel in that. I agree with you, adding t3 so early was not the right move, and again, I apologise for not listening before !

Most of us can managed a few days without Levo and not feel too bad, in fact we usually feel great for the first day. Once optimally medicated for a time, we could easily stand a couple of weeks without meds, but not so close to the beginning and so under medicated. A day off and then restart on a lower level would have been better.

Oh wow I didn’t know that! Yeah my tsh just completely dropped to 0.20

I’m sorry if I’ve come off harsh, I didn’t mean to. I’m just so afraid and lost because I don’t want to lose my job! I would be fine if this brain fog was gone.

My brain fog went once my Levo was at a decent level. Before it I couldn't work out how to calculate a price for a new product in my shop! My husband had to do it for me.

May I ask how long it took to find that dose?

It was quick. 50mcg a day did that for me. But I was also taking oestrogen HRT at the same time, so the two combined probably sorted that out. I couldn't even read for pleasure! I've always devoured books. I would just love for you to try more Levo first. Levo makes me sleep easily. If I reduce it I can't sleep as easily and my hair falls out.

Yeah I get really bad hair loss. I’ll attach a pic below. This is every time I wash my hair! I’m glad that 50 did that for you. But I’ve tried 50, 100 and 150. And all of those times, including 50, I developed brain fog that doesn’t go away. I didn’t have brain fog prior to starting Levo. It also made me lose 8kg in 3 weeks which isn’t good at all. It made me thirsty, gave me massive headaches/ migraines, it doesn’t let me sleep at all. Makes me sweat! Even at a dose of 50

Hair loss

I only wash my hair once a week now. The texture is completely different. Light and flyaway and dull.

It takes 8 weeks with each dose until you know what it's doing for you. You also said you tried Teva. Not sure if that was in the different doses but I can't tolerate Teva at all. I tried it once. Within the first week I felt terrible and had a few small nose bleeds (I never have nose bleeds) and then one morning, naked in the bathroom my nose just poured with blood. I was really scared. I could not move from the sink because it was just going like a tap. I was cold, wet and frightened. My husband has had nose bleeds all his life so he was really useful and we eventually got it stopped. Over 1 hour! The bathroom looked like an abattoir. GP said it couldn't possibly be the Teva but I knew different. I had another big bleed a few days later. I swapped back to a different Levo and never had another big bleed. I had a few small ones because the vessels were damaged by the big one. I had it cauterised and no problems. I raised a yellow card against Teva and the pharmacy has it on my records never to dispense it to me.

I’m sorry that that happened to you. That sounds extremely terrifying. I’ll stick to accord for now because that’s the one I have at home. I’ll see what the pharmacy gives me next time

I’ve also tried teva and accord, but they’re both the same to me. Maybe I just don’t get on with Levo!

I seem OK on Wockhardt (for the 25s) and Mercury or Almus. I stick to those.

FancyPants54 I totally agree with you. Having had TT for papilary cancer. I can honestly tell you that lack of T4 kept me up many nights. Having enough T4 for one makes a huge difference. However my thinking/feeling is adding some T3 to an existing feel good T4 for a bit of a needed boost makes more sense. But many Dr's are lowering T4 doses in many cases by a considerable amount and then add some T3 is setting the patient up for T3 failure. And it becomes a vicious cycle of never being able to feel *Optimal*.

SlowDragon profile image
SlowDragonAdministrator

Welcome to the forum

There’s nothing on your profile

Are you diagnosed as hypothyroid, or Hashimoto’s, or post thyroidectomy or RAI

What dose levothyroxine are you currently taking

Do you always get same brand levothyroxine at each prescription

BEFORE considering adding T3 we need OPTIMAL vitamin levels and levothyroxine dose fine tuned

Nether levothyroxine or T3 will work well if vitamins are not optimal

If you have Hashimoto’s or Graves are you on strictly gluten free diet.

Always test thyroid levels as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

Hi! Thanks for your reply!

I had RAI treatment for hyperthyroidism (graves) in April of this year. Then I was diagnosed with hypothyroidism with a tsh of 60. I was taking 50mg of Levo for 2 weeks, then moved to 100mg for 4 weeks, and 150mg onwards. My doctors had no idea what they were doing because I ended up being over treated, and ended up with a tsh of 0.20 and T4 of 35.6. My doctors didn’t take any of my symptoms seriously ( really bad brain fog, no concentration, ocd symptoms, really bad anxiety, depressive symptoms, hair loss and a lot more!). I went privately to see an endocrinologist and he suggested we stop Levo for 2 weeks as I was being over medicated. My results as of this week are:

TSH: 35.03

T4: 7.8

T3: 2.5

I’m now on 50mg of Levo and will be on 20mg a day of t3. I have a private prescription and I’m working on getting it sorted. I’ve had all of these symptoms for nearly 3 months and Levo is 100% not it for me. I’m constantly so tired, feel almost tipsy/ drugged from the brain fog and I just feel a sense of unreality everyday. Also I can’t sleep without waking up multiple times a day!

I have a vitamin b12 deficiency and I’ve had 6 doses of b12 shots within the last month. It didn’t affect the way I feel at all. Also I’m not gluten free/ on any special diet. I was tested for gluten sensitivity and thankfully I’m not sensitive to it.

SlowDragon profile image
SlowDragonAdministrator in reply to Angie10116

Well GP has been like a “bull in the China shop “

Levothyroxine dose should be increased SLOWLY upwards in 25mcg steps (or sometimes in 12.5mcg steps)

So yes starting on 50mcg …..waiting 6-8 weeks before testing

Increase to 75mcg….wait 6-8 weeks etc

Guidelines on dose levothyroxine by weight is approx 1.6mcg per kilo when on levothyroxine alone

Approx how much do you weigh in kilo

Which brand of levothyroxine are you currently taking

Many people find different brands are not interchangeable

Similarly different brands T3 not interchangeable

Getting all four vitamins OPTIMAL is essential for levothyroxine or T3 to work

Hair loss often low ferritin

Private prescription enables access to Thybon Henning 20mcg tablets via specialist pharmacies in U.K. at 50p per tablet (far cheaper than U.K. T3)

Roseway Labs or Chemist 4 you

thyroiduk.org/if-you-are-hy...

Strictly gluten free diet helps or is essential for high percentage of Graves patients

Something to consider

Only make one change at a time

Thank you very much for the advise! Yes, the hospital made me go up way too fast, and I me being new to hypo, I had no idea that it was the wrong thing to do!

I tried teva Levo and then accord. I thought that maybe I was having the brain fog because of the fillers in teva, and switched to accord. However whilst switching to accord, I also upped my dose to 150mg, which made me feel awful! So I don’t know which brand works best for me. I was so anxious due to being over medicated, that I had to be put on setrenaline. My doctors didn’t even consider testing my thyroid at the time and said that it was all mental health- but my private endo tested me and found that I was just going hyper.

I believe that ferritin was checked at the doctors, and they did a few other vitamins also that came back okay.

I weigh 77kg atm. I’ve lost around 8kg after starting Levo (in the space of 2 weeks lol) which was rather worrying.

Yes, that’s the t3 that I’ve ordered! Much much cheaper. Do you think that brand works just as well as the uk ones?

SlowDragon profile image
SlowDragonAdministrator in reply to Angie10116

I get my T3 on NHS so not tried Thybon

But many members say it’s the best ….smoother

Personally I couldn’t tolerate T3 until a year after going strictly gluten free and all vitamins optimal (Hashimoto’s). More on my profile

SlowDragon profile image
SlowDragonAdministrator in reply to Angie10116

77kilo x 1.6 = 125

So approx 125mcg levothyroxine was likely daily dose you should have been SLOWLY increased up to

Many people find different brands are not interchangeable

I felt best at 100 I think, so around 125 should’ve been good. But 150 was actually unbearable

SlowDragon profile image
SlowDragonAdministrator in reply to Angie10116

Yes dose needs to be very finely tuned

Often people need very very fine adjustment

Eg might take 100mcg 5 days week, and 112.5mcg 2 days week

Might need further increase in levothyroxine very SLOWLY upwards over coming months

I never knew that it would be so complicated! I wouldn’t have had the RAI if I knew

I think that would be the case for a lot of people if they knew. They are sold a pup with that irreversible treatment because no one cares afterwards.

SlowDragon profile image
SlowDragonAdministrator in reply to Angie10116

Personally i agree with SeasideSusie it’s probably far too soon to add T3 as likely cortisol is all awry after so many vast changes

But assuming you are going ahead, it’s equally (or even more) important to start T3 SLOWLY

Most members on here start on 5mcg waking

Then wait 2-3 days

Assuming ok

add 2nd 5mcg dose mid-late afternoon

Wait a week, possibly longer ….Before adding 3rd 5mcg

Some people find last dose T3 at bedtime improves sleep

Others can’t tolerate last dose after 6pm

Very much trial and error what suits each person

After a further week you might be able to add last 5mcg

Possibly then moving to 2 x 10mcg doses at approx 12 hours intervals

Others find it better to stay on 3 doses at roughly equal 8 hour intervals

Others can eventually tolerate full daily dose T3 as single dose

I don’t know much about t3 dosage to be honest. My endo has decided to put me on 20mcg a day to start with and 50mg of Levo. He said to take 10mcg in the morning and 10mcg in the afternoon. I didn’t know that it should be started more slowly

SlowDragon profile image
SlowDragonAdministrator in reply to Angie10116

Well you can try it ….might be fine

Every person is different

Hopefully it won’t make me feel worse! Do you know what t3 can help with? What symptoms it takes care of for most patients?

Thank you for your advice, I'm sorry to jump on this post but I'm just about to start on T3 too. I am awaiting delivery today of Thybon as prescribed privately and have been advised to take 5mcg three times a day. I feel very unsure and anxious after reading on here about starting slowly and think I'll start with once a day too. It doesn't seem right going against what the consultant prescribed but I am so scared of getting palpitations and feeling unwell as I struggle with health anxiety.

I’d stick to what your doctor has prescribed. They know what’s best for you as they know your history and lab results. I also have health anxiety and I know how it feels to be wary of medications. But please don’t go against your doctor as they are the medical professionals.

I'd say that an awful lot of doctors DON'T know what's best for you - which is why there are now over 120,000 people on this forum!

Please don't take so much lio from a standing start - introduce it slowly as SlowDragon advises. My endo gave me a big initial dose - and while I have the guts of a rhino and felt quite happy on it, it has given me (permanent) vitiligo on my face and fingers, which is annoying. It's easy to build up (slowly) to the right dose - and maybe find your own personal "sweet spot" along the way to what has been prescribed, but if you take too much and this gives irreversible consequences, as with me, well, they're irreversible

Please also be aware that lio isn't a cure-everything medication. It's brilliant for people, like me, who are por converters, but it doesn't suit everyone - especially if they don't have a conversion problem to start with x

Maybe I will take 10 a day then for a few days and then build up to 20. I’m sorry that you suffered with a side effect! Hopefully you’re well

Seriously, give Levo a chance properly first. But if you can't, if you really can't, start on a quarter tablet of Thybon Henning for several days. If you feel anxious or somehow alarmed internally 2 hours after you took it you will know you were wise to start slow. It's a horrible feeling and comes from taking too much at once. But T3 is a lifelong complication that you might not need. You need to get your Levo dose raised to a sensible level first.

I have a prescription for 20mg tablets, so I don’t know if I can quarter the tablet?

Can I ask what your big starting dose was?

He halved my levo and gave me a MASSIVE 40 mcg of lio! 6 weeks later, in an appointment lasting less than 30 seconds, this was halved, so I'm guessing it was a mistake ;)

If I were starting now, I'd work up from 1/4 x 20 mcg tablet ...

I’m really sorry that he gave you so much! That’s absolutely crazy.

It's a shocker, yes! And he's the senior endo at the hospital and claims thyroid as a specialism in his hospital biog (most endos just refer to diabetes). As a Grade A cynic, I'd say I was being set up to fail - but that didn't work - haha!

At the time, what shocked me more was that 4 years ago lio was MUCH more expensive than it is now, and yet the hospital had let ALL of its stock go out of date and had to chuck the lot when I got that first prescription

On the up-side, I've felt really happy with lio and am now fully fit and well and back to how I was before I was ever diagnosed (but this time of year is still quite scary, as there's always the risk that the lio will be cancelled at my annual review ...) x

Thank you, it's so confusing isn't it especially as we don't feel well to start with. Hope you soon feel better too Angie x

That’s right! It’s so frustrating!! Thank you lovely, I hope you feel better also ❤️

DippyDame profile image
DippyDame in reply to Angie10116

I have to disagree! I'm afraid as far as thyroid disease is concerned, - especially with regard to patients who do not respond to basic levo treatment - many doctors absolutely do not know best!

I suffered from " doctor knows best" for about 20 years until I could barely function. They had no idea what was wrong with me, slowly increasing my levo dose (to 225mcg) made me worse and eventually one of them suggested a talking therapy...which I refused!!

One of them told me to do exactly as the doctor advised and I would be well.

I disgreed and told them I would find the cause myself. So, I guess they concluded that it was all in my mind...or I was crazy!

Experienced and knowledgeable members of this forum gave me better thyroid advice and support than any doctor.

After much reading and advice here I did indeed discover both the cause of my declining health and how to treat it!

I have a type of thyroid hormone resistance/tissue hypothyroidism and need a high dose of T3

BUT, beware, T3 is not the panacea of all ills...if the body doesn't need it, it won't help!

First you need to find out if you actually need T3!!

"Doctor knows best" is not my experience, I would now be bedridden like my grandmother - or in extremis, dead - had I continued along that route.

Angie10116 profile image
Angie10116 in reply to DippyDame

I appreciate that you’ve been through hell, and I’m very sorry that doctors treated you like this. Mine also told me that it was just mental health, when in fact I was being over medicated. It’s best to seek a good endocrinologist if you’re able to. People in this forum are in fact a lot more helpful than any doctor I’ve been to, however you need a good endocrinologist to actually be prescribed the meds you need.

DippyDame profile image
DippyDame in reply to Angie10116

And I appreciate that you are attempting to help but I don't need an endocrinologist thank you. Been there!

Like many others here I self medicate and buy my own T3

Hope your medics are keeping you well

Finding a good endocrinologist on the NHS these days is like finding hens teeth. We either have to find one that's half-decent privately or do it ourselves.

I beg to differ! I've never seen a doctor or Endo. who has a clue about T3.

I’ve gone privately to someone who specialises in using t3 + t4

He told you to start on 20mcg a day. I'd say he is not as experienced as you think. We have to feel our way. I trusted an Endo. Now I'm trying to work out the damage and undo it.

You will get better advice on here than from a consultant I'm afraid. Go slow. 5mcg a day is enough to start with.

Thank you, that's what I will do for a few days and see how I go. Before upping to the 3 x day he prescribed. The endocrinologist I saw privately is on the thyroid uk list as one who will prescribe T3, that's why I went to see him. I ordered the thybon direct and it's arrived today. Will start when I get a pill cutter as it should be a bit more accurate than my old scalpel blade x

Do a quarter tablet for a few days. Then 2 x quarter tablet spread out by 7 or 8 hours and then a few days later add the 3rd quarter. I split mine twice a day 8am and 3pm. I'm not saying that's right for you, but it's how I do it. Thybon is easy to cut with a pill cutter.

Thank you, I will try that then when they arrive. I hope that it all works out well for you. And again I’m sorry for coming off grumpy

We've all been grumpy. Suicidal. Desperate. It comes with being hypo. I see a well respected private Endo who also specialises in this. But we are all different and what they do for one doesn't work for all. He has messed me up. He's lovely. But I realised about 2 months back that I am on my own still. I can use him for general questioning and advice that I then decide whether to implement or not and I can of course get my private prescription for T3 from him. I knew his starting regime was likely to fail. But I had struggled for so long and was so desperate for someone to do it for me that I threw caution to the wind and decided to do it his way. It was a bad idea. Very.

I know don't know if I'm on too much or too little T3 and it's having a very odd effect on my blood results. Each day this week I've felt like sobbing because I don't know what to do. If I could use Levo only I would gladly. But I have a genetic fault on an enzyme called Dio2, which quite a lot of us have, which means I can't convert T4 (Levo) into T3 very well or reliably, and so I have to have some T3. The question is how much? Each time I increase I feel good on the day of the increase and then back to horrible.

I just want you not to suffer like this. I could not hold down a 9-5 job. I run my own business so I make the hours and rules.

I’m honestly really sorry to hear that. It also seems like you’ve been feeling like this for a long time, and it sounds awful. I will be careful and take it slow like you suggested. Thank you for the advise

Thank you that sounds like a plan to suit me, I don't fancy jumping in feet first with 3 doses a day. Glad they're not difficult to cut too. Appreciate everyone's support and shared experiences, it's ok for the consultant to say do this or that but it's not them that have to deal with any side effects. Still I've got it prescribed now so I can see if it helps x

Keep us updated ! ❤️ Honestly best of luck

Will do, it's good to share our experiences x

Great mindset. These consultants have their uses, but a lot of us have had to learn the hard way that following their instructions to the letter is not the right thing to do in many cases. I think it's because it's a hormone we are taking and not a medication. Medication results are easier to measure and track.

Hi Angie - I'd advise you to go for it, and monitor your own responses to the T3. I've done a lot of research on the use of T3 and T4 myself and have read every relevant academic article available on the NHS databases. It has become very clear to me throughout the course of my personal studies that most endocrinologists are quite clueless regarding thyroid issues and are happiest when they are adhering rigidly to their outdated guidelines and associated blood test ranges. Whilst doctors cannot be blamed for the fact that so little is known about thyroid hormones, they can be blamed for pretending to know and understand everything about the subject and then proceed to mistreat their unfortunate patients. Many doctors like to quote Paracelsus, the 15th century doctor who stated "only the dose makes the poison" . This is a classic toxicology maxim and it is one which I follow in my own use of T3 (T4 does not work for me at all) . I have nothing but good things to say about T3, but monitor your use of it and record the effects for best effect.

Angie10116 profile image
Angie10116 in reply to Ophelia1

Thank you very much Ophelia,

That’s what I will do! Thankfully the endocrinologist I have doesn’t look at test reinstall that much, he goes off of how I feel/ what symptoms I have. I’m really lucky to have found him. But omg yes I agree about the GPs! One of mine thought that a tsh of 60 meant that my T4 is TOO HIGH! Absolutely disgraceful.

May I ask how t3 has helped you!

Hi Angie

Several hours after I took my very first dose - two weeks ago - I noticed that the brain fog had almost disappeared. The joint pain I'd been experiencing since 2016 had begun to fade, particularly the pain in my feet. Constipation gone too - hurrah! I have also began to feel energetic again. Hopefully the three stones I've gained over the past 3 years will begin to fall off too - (I went from 8 stone to 11 stone and have been 11 stone for 18 months now, regardless of what I do. I'm so pleased about the brain fog though. It's great to be able to think and concentrate again. I was using all of my energy to try to do my job. Literally no energy to do anything else.

Angie10116 profile image
Angie10116 in reply to Ophelia1

That actually sounds incredible, I’m really hoping that the brain fog disappears for me also because it’s like being stuck in a cloud and simply not being able to think straight. I’m also really glad that all of your other symptoms have gone away, and I’m hoping that you’ll be able to lose the weight. It’s great that things are looking up for you! ☺️ Could you describe how your brain fog felt prior to starting T3, did it feel like unreality? Almost as if you’re living in a game if that makes sense.

Ophelia1 profile image
Ophelia1 in reply to Angie10116

I find it very difficult to explain the sensation of the brain fog. Plus, it is not always the same. Do you find that? However, most of the time it feels as though my brain and my will are detached from each other. I want to think and concentrate, but I can't. Sometimes it feels as though the ability to think clearly is just within my reach, but impossible to get to. I was off sick from my work for several months last year and it was not because of my physical symptoms (though there were many of those!) but entirely because I couldn't use my brain properly. Doctors don't want to take brain fog seriously, and therefore they don't listen.

Angie10116 profile image
Angie10116 in reply to Ophelia1

Yes I relate that completely. Mine is kind of the same every day but varies in severity. I’m also off of work for the past two months because I just cannot think and my memory is so bad that I can’t remember what I did yesterday. I’m only 19 so it’s kind of scary but oh well. So did your brain fog completely go away since starting T3? I’m sorry that you had to take time off work

Doctors are very keen to attribute brain fog to depression. In my opinion, brain fog does cause depression. How could it not? However, the brain fog comes before the depression. I have felt depressed, but I have never taken antidepressants because I knew the brain fog was the bigger problem for me and that it was not caused by depression.

Angie10116 profile image
Angie10116 in reply to Ophelia1

Yes I agree with this as well! I’ve never suffered with depression before and this brain fog really really made me feel the lowest I’ve ever felt. Also anxiety, I’ve never had severe anxiety and since becoming hypo I’ve had to be put on antidepressants because I actually couldn’t handle it anymore I thought I was going insane, but it was just over medication that my doctors didn’t even pick up on. My T4 was 35.6 and they thought I was fine and wanted to leave me for another four weeks on that dose.

Ophelia1 profile image
Ophelia1 in reply to Angie10116

Hi Angie - To be frank, I have completely lost faith in medics. After four years of illness, last year I was finally found to have antibodies for lupus and diagnosed. This was a bit of a pyrrhic victory, as blood tests revealed numerous very significant abnormalities during the three years before I finally received the diagnosis. These results were ignored. It is difficult to understand how or why, but they were. Instead of being treated properly and taken seriously, I was told that I had health anxiety and treated accordingly by numerous doctors. I'm now under the care of gastroenterology and rheumatology, but have no faith at all in any of my treating doctors, who now want to draw a line under their various misdiagnoses and pretend it never happened. Over the past four years I have found doctors generally to be far too keen to prescribe what I call "shut up" drugs such as antidepressants and major painkillers. I'm not dismissing the use of these drugs. In the right place and at the right time, they are absolutely necessary and undoubtedly helpful, but it is appalling when doctors prescribe these meds when they don't know what else to do.

Angie10116 profile image
Angie10116 in reply to Ophelia1

I completely agree. It’s so dumb that they prescribe medication just to treat the symptom, rather than actually finding out what’s going on and digging deeper. I’m so so sorry that you’ve been going through this hell. You’re extremely brave and I’m so glad that you’ve finally been diagnosed. The doctors that said you’re fine should be disgraced at what they put you through. Did your brain fog go away completely after starting t3? Or does it still linger

Ophelia1 profile image
Ophelia1 in reply to Angie10116

Hi Angie - Thanks for your good wishes. I started taking T4 before ever taking T3 and noticed a distinct effect in that my brain fog faded away almost completely within 24 hours of first taking it. Unfortunately, I found that T4 made me feel unwell in other ways and didn't really have any other effect on my other symptoms. Having read about the use of T3, I then decided to start taking T3 instead two weeks ago. The T3 has had the same beneficial effect on my brain fog as the T4 and has also impacted positively on my other symptoms too. I can't say I'm 100% better, but I'd say 60 to 70% of the brain fog is gone. My thinking is that it is early days with the T3. I'm taking 12.5mcg first thing in the morning an hour before I get up. I know some people split their dose into three separate ones, but I have also read that once daily works for some. I've had no ill effects. My BP is fine, as is my pulse and temperature. The only effects so far have been good, so I'm going to alter the dosage gradually in the hope of reaching an optimum level. What are you going to do with yours?

Angie10116 profile image
Angie10116 in reply to Ophelia1

I’m really glad that it’s been helpful for you and I really hope that you’ll get back to 100% overtime ☺️

I'm going to disagree with some of the comments on this thread.

I realise that someone with Graves could well have extremely high levels of Free T4 and Free T3 immediately before RAI. After RAI those levels will drop because the thyroid has been deliberately damaged. But how fast they drop will differ from person to person, depending on the size of the thyroid, the size of the person, and how much damage has been done. It sounds to me as if your thyroid hasn't just been damaged, but has actually been killed off, which might have been the desired result, I don't know.

So, I think that patients should have regular blood tests (weekly or fortnightly would be good), until Free T4 and Free T3 drop into range. The TSH is a pointless test in someone whose levels of TSH has been suppressed by hyperthyroidism - it can take weeks, months or years for TSH to rise, although yours apparently didn't.

[How long was the gap between you having RAI and your TSH of 60, by the way? I'm curious.]

As soon as Free T4 and Free T3 drop into range then patients should be started on 75mcg - 100mcg Levo. If the thyroid is no longer working then living without thyroid hormones until TSH is 60 sounds like you've been tortured - and your Free T4 and Free T3 were below range at the time, making the delay to your treatment even more reprehensible.

Angie10116 profile image
Angie10116 in reply to humanbean

Yes, my thyroid was completely killed off and I have no more thyroid function. The drop to a tsh of 60 was 2 months, which is crazy for me. I don’t know what the difference between free t3 and t3 actually is, could you explain?

Do you think that t3 would be reasonable to add onto my t4? I’m now only taking 50mg of Levo but I have a prescription for t3

humanbean profile image
humanbean in reply to Angie10116

To leave someone who had their thyroid killed off without thyroid hormones for two months is scandalous. Doctors seem to think they are an optional extra instead of hormones that are essential for life.

In the body, hormones are mostly carried around the bloodstream attached to transport proteins. The body can't make use of hormones that are attached in this way, and it has to separate the hormone from its transport proteins before use.

T3 in the blood can be Free T3, which is T3 without transport proteins attached. Or it can be Total T3 which is Free T3 + T3 attached to transport proteins.

The best test of T3 in the blood is Free T3, but some labs will only test Total T3. I don't know why, because I think the two tests cost about the same.

T3 in the body is officially called "triiodothyronine", although this is a name patients never use (and almost never need to use).

en.wikipedia.org/wiki/Triio...

But the T3 that people take in a pill is officially called liothyronine - it's the name you will find on the packet. Most people just refer to the pill as T3.

en.wikipedia.org/wiki/Lioth...

[In contrast, T4 is called thyroxine when it comes from the thyroid or is found in the blood, and Levothyroxine in a pill. The same comments about Total and Free apply to T4 as well as T3. Free T4 is the level you need to know, not Total T4.]

I do think in an ideal world that you should take more T4 before you add T3. If you could get your Free T4 to be about two-thirds to three-quarters of the way through the range you should start feeling more human again. At the moment your levels of thyroid hormone are so low that you have no chance of feeling well.

Once your Free T4 is higher then you have a far better chance of taking the right amount of T3 for you.

Angie10116 profile image
Angie10116 in reply to humanbean

Thank you for the explanation. It’s been really helpful. I didn’t have many symptoms really, just sleepless nights and anxiety. But after two months everything started to pile on top of eachother and it became dreadful

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