I really hope someone can help me, apologies for the super long post. I've suffered on and off over the years with subclinical hypothyroidism and started on 50mcg of levothyroxine. I caught covid in 2020 which then gave me the Hashimoto's marker and made me slightly underactive. I was put up to 100mcg. I haven't felt amazing on it tbh, still massive fatigue, brain fog, weight issues etc. When I was pregnant in 2021 I was put up to 125mcg and after my daughter was born in July 2022, I never went back down. Around October 2023, I started getting some random heart palpitations and anxiety which I'd had when I started to go hypo in 2020. The symptoms got worse in November 2023 with 3 trips to A&E. It slowly went away. I had a bad ear infection in December 2023 and then skip to four weeks ago where one day I was sat there minding my own business and I suddenly came over all hot, dizzy, nauseous, massively anxious-the worst anxiety id had and for no reason, my ears hurt, the back of my head felt like jelly, I felt like I was going to pass out, my vision was weird and my head felt like it had ants walking all over it, hand tremours, felling jittery with a nervous energy, slurring speech. Closing my eyes was awful and my sleep was non existent with awful hallucinations at night. I've been back and forth to a&e and my gp many times (had a clear MRI scan as i was being diagnosed with either menieres or labrynthitisat one point). Some have said this is my thyrpoid and it's underactive, they've found a blood test from Nov 2023 with my TSH at 7 and my T4 at 13. They told me to up my levothyroxine to 150mg. This hasn't sat right with me so I paid for a private test and my TSH was 5 and t4 18.5. That's the highest t4 I've had and my levels never sit there ever. I am never over 13 for t4. I think I need to reduce my levothyroxine down even though my TSH is still a bit higher than I'd like. I do well with a TSH between 0.5- 1.5. What is the hive minds thoughts on this as I think going to 150mcg wouldn't be wise as I feel these symptoms are hyper even though they could be hypo. I skipped 4 days of meds and my symptoms seem to lift quite quickly, when I told my gp this and that I'd gone down to 100mcg she was not impressed at all. She said we can do nothing but wait for 6 weeks now and then test my blood at 100mcg. I pormised her I'd take my 100mcg but the minute I started taking it, the symptoms have come rushing back. The feeling like I am going to pass out is just the worst and I feel like its a medical emergency when it happens. I am struggling to function let alone look after my little one and I want to get this fixed and get on the right track ASAP. Thanks all
Help! I'm really Struggling : I really hope... - Thyroid UK
Help! I'm really Struggling
So has anyone thought to test your FT3? I bet not. You may be taking too much levo for your own personal comfort, but your FT3 could still be too low, and that would mean you're still hypo, and that those symptoms - at least some of them - are hypo symptoms, and not over-medication.
So if you haven't had your FT3 tested - and low FT3 would account for your high TSH despite the high FT4 - then that should be your next step.
Hey, thanks for the reply. My T3 was tested November 2023 with the TSH at 7 and the T4 at 13. I belive that's "in range" isn't it? I'm literally clueless as to how to get rid of these symptoms, do I go up or stay down? Because I really don't think the results are helping. Many Thanks
My T3 was 3.2 missed that bit out
I'm afraid you have to give us the ranges, because they vary from lab to lab. Was your FT4 range 12-22, and T3 3.1-6.8? If so, then both your FT4 and FT3 were in-range, but only just - much too low!
But, things could have changed since November 2023. You need up-to-date labs. Your FT4 has gone up massively for a start, but that doesn't mean your FT3 has. So, it's rather difficult to advise you.
I skipped 4 days of meds and my symptoms seem to lift quite quickly,
That doesn't mean anything. It happens to everyone: stop your thyroid hormone and you will feel better than you have for years. But, it's only temporary and symptoms will come back sooner or later. And possibly worse. And it does not mean that you have been misdiagnosed, or that the thyroid hormone is causing the symptoms, it doesn't mean a thing.
Short term I don't think there's anything you can do about it. As you reduced your levo you now have to wait the six weeks for a retest. But you do need that FT3 tested, that is essential to know what's going on.
Hello, yes FT4 range 12-22, and T3 3.1-6.8, those are the ranges. What do you do with a low T3? I don't think my gp will test for T3 but I will ask. The T3 was done in A&E after another trip there. I honestly feel like I am loosing my mind, I've made the decision to go down which I'll accept but if I do have a low T3 and a hight T4 what does that mean? Many Thanks
It mean that you don't convert well.
There are many reasons for poor conversion. One of them is low nutrient levels. Have you had your vit D, vit B12, folate and ferritin tested? Have you tried taking selenium?
Another reason is having Hashi's. Many Hashi's people are poor converters and there's not much you can do about that. Except take T3 with your levo. But, that is very hard to get prescribed. Partly because it's expensive, and partly due to ignorance. Doctors just don't understand how important it is.
However, you could buy it on-line without a prescription and treat yourself.
You're not losing your mind, you are suffering from insufficient T3. Every single cell in your body needs T3 to function correctly. If there's not enough in the system then all sorts of symptoms can occur, both in your body and in your brain. So, it often feels like we're going insane. We aren't. We're just suffering from medical ignorance.
I've been tested for all the above and take supplements (spaced out from my thyroid meds). I just don't know what to do anymore as I just feel so so poorly and I've got to wait 6 weeks for a blood test that won't bring me any closer. I've bought some selenium but haven't started taking it yet. Do you think that would help?
Impossible to tell without trying it. It helps some people.
But I'm afraid there's no way round the six weeks' wait. The results won't be accurate if you test before. However, since you reduced your levo to 100 mcg, the results will probably be worse than if you were taking 150.
When you get the results, calculate the percentages through the range - handy calculator:
Then you can point out to your doctor the difference between the FT4 and the FT3 showing that you are a poor converter and you need to see an endo to get T3 prescribed.
Thanks for this, do NHs endos prescribe T3 in the UK? I just don't know how much longer I can hold out with these symptoms..they're just the worst.
Some do, some don't. It's a bit of a lottery really.
Thanks for the link, what does the range show?
I think this article explains this better than I can:
The normal range: it is not normal and it is not a rangeThe normal range: it is not normal and it is not a range
What’s range on Ft3 ……looks extremely low assuming range 3.1-6.8. Most people on replacement thyroid hormone need Ft3 at least over 5…..often may need it over 6
Ft4 at least 60-70% through range too
ALWAYS test early morning and last dose levothyroxine 24 hours before test
Which brand of levothyroxine are you taking
Do you always take levothyroxine on empty stomach and then nothing apart from water for at least an hour after
No other medications or vitamin supplements within 2 hours
Some like iron, magnesium, vitamin D tablets, HRT at least 4 hours away
What vitamin supplements are you taking
Get GP to test B12, folate, vitamin D and full iron panel including ferritin
Test early morning and only water to drink between waking and test
Don’t eat iron rich dinner night before test
I don't get given a brand here in the UK, its what ever is in stock I'm afraid. I've had all the above already tested and I take supplements for the things I am lacking in. I only take my meds in the morning with water and away from any other foods or vitamins and minerals. I'm just not really sure what to do as I just cannot cope with these symptoms and having a toddler. I feel like I am going insane. I have no idea if I'm taking too much or not enough and even whether levothyroxine even suits me. Thanks for your response to me anyway. Many Thanks
This is U.K. based forum
Thousand of U.K. members struggle to always get same brand
If you notice a difference between brands request GP specify brand you do best on all prescriptions
Many people find Levothyroxine brands are not interchangeable.
Most easily available (and often most easily tolerated) are Mercury Pharma or Accord
Mercury Pharma make 25mcg, 50mcg and 100mcg tablets
Mercury Pharma also boxed as Eltroxin. Both often listed by company name on pharmacy database - Advanz
Accord only make 50mcg and 100mcg tablets. Accord is also boxed as Almus via Boots,
Wockhardt is very well tolerated, but only available in 25mcg tablets. Some people remain on Wockhardt, taking their daily dose as a number of tablets
Lactose free brands - currently Teva or Vencamil only
Teva makes 25mcg, 50mcg, 75mcg and 100mcg
Many patients do NOT get on well with Teva brand of Levothyroxine.
Teva is lactose free.But Teva contains mannitol as a filler instead of lactose, which seems to be possible cause of problems. Mannitol seems to upset many people, it changes gut biome
Teva is the only brand that makes 75mcg tablet.
So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half
But for some people (usually if lactose intolerant, Teva is by far the best option)
Aristo (currently 100mcg only) is lactose free and mannitol free.
March 2023 - Aristo now called Vencamil
healthunlocked.com/thyroidu...
healthunlocked.com/thyroidu...
List of different brands available in U.K.
thyroiduk.org/if-you-are-hy...
Posts that mention Teva
healthunlocked.com/search/p...
Teva poll
healthunlocked.com/thyroidu...
Once you find a brand that suits you, best to make sure to only get that one at each prescription.
Watch out for brand change when dose is increased or at repeat prescription.
Government guidelines for GP in support of patients if you find it difficult/impossible to change brands
gov.uk/drug-safety-update/l...
If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient.
If symptoms or poor control of thyroid function persist (despite adhering to a specific product), consider prescribing levothyroxine in an oral solution formulation.
academic.oup.com/jcem/artic...
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
And here
pharmacymagazine.co.uk/clin...
Discussed here too
healthunlocked.com/thyroidu...
Once you have been on same dose and same brand at least 6-8 weeks get FULL thyroid and vitamin testing
Privately if GP is unhelpful
I've had all the above already tested and I take supplements for the things I am lacking in
Please add most recent results and ranges
Thanks so much for this, I'll give it all a read. I'm pretty sure I've been taking accord the most when on 100mcg
Sorr, range is what you said in your post
I think your GP was right to suggest 150mcg based on your tests as well as symtoms. Symptoms of both hyper and hypo overlap and vary according to individual.
For example, I am hypothyroid, but I don’t have constipation, I actually have a regular loose stool which is more consistent with hyper. But, all my blood tests confirm hypo.
How long have you been on 100mcg? If not too long, you could potentially try going up to 150mcg now without waiting for 6 weeks on 100mcg, and then test again after 6 weeks on 150mcg.
With that said, I’m not sure it’s a good idea at all to yo-yo on doses too frequently, and it’s not clear to me how often or how quickly you’ve changed doses in the last few months.
Thanks for the reply. I've been on 125mcg for a while and felt that I was getting hyper on it. So the reason I've dropped down. I'm not even properly Hypo and I thought 150mcg was a bit jump. I thought I was getting hyper as I'd been on 125mcg during my pregnancy and never went back down to pre pregnancy levels. Now I'm thinking I've made the wrong decision and I can't have another blood test for 6 weeks, so I'm stuck like this. I feel so rotten and poorly.
I've been on 100mcg about 5 days
It’s really not too late to go up who 150mcg and retest after 6 - 8 weeks on the this dose.
I've come down as I thought my symptoms were due to too much levo....I'm scared either way at the moment. I do have similar symptoms to when I went slightly hypo in 2020 mind you. Its just wouldn't it make sense to go back to my pre pregnancy dose?
Based on your latest test results you are still hypo, though I do query your second T4 (free T4 I presume) since it usually and consistently lower. Although, you haven’t shared ranges for your tests so this is assumption.
As I said, your symptoms could be hypo not hyper as they do overlap.
To be honest, since it is February now, a test result from November is too late to go on for a decision on your dose, and as I said, I query your private test even so it’s not clear when it’ll that was either.
Realistically, you need an up to date thyroid panel as 5 days of 100mcg won’t impact the numbers just yet theoretically.
I’d be inclined to up back to 150mcg now.
Which brand is 100mcg
Which brand is 50mcg
Do you have any 25mcg ….if yes which brand are they
Would going up to 150mcg so quickly have an affect? I'll have to speak to my gp about it as she won't let me change my dose without consulting her first. I'm just worried my symptoms will get worse if I go up even more. I don't have any 50s but 100mcg is Accord and 25mcg is Wockhardt.
Suggest you do 6 weeks on 125mcg
Retest correctly
how much do you weigh in kilo?
I'm around 104kg. The reason this all kicked off was because I was on 125mcg and I started getting awful hyper symptoms, so that's why I've been hesitant as that was my initial dose.
Your GP can’t tell you what to do with your dose. You know this as you was told by GP to go up to 150mcg instead you went down to 100mcg.
What do you mean you're 'not properly hypo'? Don't be taken in by this subclinical nonsense. It's like being pregnant, either you are or you aren't. You can't be subclinically pregnant. That is just the way doctors try and wriggle out of diagnosing and treating you, because they don't like doing it.
That's interesting. They keep telling me I'm subclinical and not actually hypothyroid, so when I feel THIS poorly I feel like none of it makes sense. I just feel so poorly and I'm struggling to get the help I need as no one in the health care profession is listening. The thought of having to wait another 6 weeks just to discuss my bloods is sould destroying. I feel like I am going to pass out like 10 times a day! I cannot cope with the symptoms.
Well, if I were you, I'd put it back up to 125 quickly and see if that helps. We do need to take account of symptoms, but as has been said, most symptoms are the same for both under and over-medication. Which is why we need blood tests to back them up. If you don't know your body well enough - and not many people do unless they're forced to - then you can easily think you're taking too much when you're taking too little.
Plus there is no limit to symptoms. Because every single cell in your body needs the correct amount of thyroid hormone to function correctly, symptoms can appear anywhere and everywhere. It's not just about losing hair and feeling cold, as doctors think, it's far more wide-spread than that. And the symptoms are non-specific - they could be caused by a variety of other conditions - and every hypo has his/her own personel symptoms list. It's really pretty complicated. So, we always advise never to change your dose without doing labs first.
Doctors never listen to patients. And it's not just about thyroid. Doesn't matter what's wrong with you, they make up their own theories out of practically nothing, and refuse to listen to the facts. And it's almost impossible to make them change their minds once they've decided what you've got, even if you haven't! I was once operated on for a slipped disc I didn't have. I have never in my life seen a bigger pair of blinkers than the ones that surgeon was wearing. But, he just didn't listen, and I was desperate. That's the way it goes. Don't let it get to you. 
I just don't get why they're telling me to change my meds without a blood test. My gp has made me promise not to change my meds without speaking to her first and she's on holiday until Friday. I'm not sure I'll get her to agree to bloods now as she's said I've messed it all up already. I think I need bloods before a decision is made. Maybe A&E will see me tomorrow and test my thyroid. My GP haa said private tests arent done in the sameab as the NHS ones so arent accurate enough. I just feel so so desperate. I've started a selenium and zinc supplement and I think I've made the decision to go gluten free. The last time I was this bad was in 2020 after I had covid and these symptoms seem to be off the back of a bout of COVID too. Thanks for listening.
The only time my thyroid was between 1-2 consistently, was when I was pregnant and that's not show on the above.
By 'my thyroid', do you mean your TSH? TSH is not your thyroid. It's a pituitary hormone. Has your doctor been using the TSH to dose by? If so, that's why you can never 'regulate' it. Plus the fact that you have Hashi's, which is going to make your TSH jump around, anyway.
Hello, yes, sorry, I meant TSH. I don't know how the use the results but they do mention my TSH went talking to me about my results. So how can I try and get it stable? Or is that wishful thinking?
OK, so they probably are dosing by the TSH. Well, I'm afraid you're going to have to learn about your disease and how it works. If you don't know that, then you can't argue with them when they make bad decisions. You have to learn to say no if you don't want your dose changed, but you'd have to know why you don't want it changed.
Not exactly wishful thinking, but the point is, it's not about the TSH. We don't care about the TSH and they do! It's about the FT3, although doctors don't know that. And you probably won't get it stable right now, but you do need it higher. So, first, you have to get it tested.
I don't understand why they're not interested in T3. Someone has given me the name of a private endo that prescribes T3 and NDT, so hopefully he will care about T3. I have tried to research as much as I can but I get very confused and conflicting information so just end up spiralling and going round and round in circles. I'll try my gp for blood and request T3 to be measured and then I'll try and get in with this private endo and discuss the low T3s. Thanks for listening and advising anyway.
I just don't get why they're telling me to change my meds without a blood test.
Who? The people on here? Not really changing, is it? What they're advising is back-tracking, going back to the dose you were on before. Having only been on the reduced dose of 100 mcg for only five days, it won't have made much difference. But, you must do what you feel is best for you.
she's said I've messed it all up already.
Well, slightly, yes. But, as said above, it's not too late to back-track.
My GP haa said private tests arent done in the sameab as the NHS ones so arent accurate enough.
This is rubbish. They are perfectly accurate - well, as accurate as any blood tests can be - and a lot of them are done in NHS labs (but I can't remember which ones). It's just that they don't like you doing private tests because it undermines their authority!
I've started a selenium and zinc supplement and I think I've made the decision to go gluten free.
OK, selenium for the conversion I take it? Why the zinc?
Do you know why people recommend going gluten-free? It's not going to help your thyroid in any way. It's just that a lot of Hashi's people are gluten-sensitive and it cause symptoms for them. Cutting out gluten will get rid of thos symptoms - which can be a great thing - but it won't help symptoms that are due to low thyroid. Worth a try, though.
The last time I was this bad was in 2020 after I had covid and these symptoms seem to be off the back of a bout of COVID too.
Ahhhh that could have a lot to do with it! COVID has really messed everything up. I had it in October 2022 and I don't feel it's ever really gone away. Maybe I've had it more than once, I don't know because I haven't got any tests left. Or maybe it's Long COVID, but from time to time I feel certain symptoms come back, and my breathing has never recovered - nor have my eyes. So, perhaps that's at the root of the problem for you.
I meant the GPS changing my dose without a blood test. I read that zinc was just a good for conversion as selenium is. I always get worried about taking suppments in case i take too much of it. Yeah, i did read the stuff about Hashimoto's and gluten and youre totally right, its not going to help a dodgy thyrooid but mught make some of these symtoms better. If it is all to do with COVID, I'm not sure how I can fix that. I feel the level of conversation we're having here is not the same level as speaking to a GP, so it will all fall on deaf ears!
You can have a conversation with your GP?!? Well, that's a start. lol
I think she probably just said to increase the dose because she didn't know what else to advise you. No, she shouldn't have done that without testing fist, that was very wrong of her.
I'm not sure about zinc being 'as good' for conversion as selenium. Selenium is an integral part of the conversion process, but I don't think zinc is.
What's more, it's more complicated than that. Zinc has to be balanced with copper. If one is high the other will be low, and vice versa. However, when you are hypo, you usually have one low and therefore the other high. Most of the time, it's the zinc that is low, but it could be the copper. So, best to get those two tested before taking them. If you increase the wrong one, it won't be pleasant!
I always get worried about taking suppments in case i take too much of it.
If you stick to the dose given on the bottle you should be alright. And with supplements like B12, folate, magnesium, vit C it doesn't matter because they are water soluble and excess is peed out. You're just paying for expensive pee, that's all. The danger is with fat-soluble vitamins like vit D, K2, vit A, etc. You need to avoid taking too much of those - and iron, too.
The important thing is to get these nutrients tested before taking them because even if excess isn't dangerous, there's no point in taking them if you don't need them. More is never better, it's a waste of money.
I'm not saying it's all to do with covid, but covid is probably making it all worse. And, you do need good levels of thyroid hormones to be able to combate infections like that. If I were you, first of all, I would get tested for covid to make sure you haven't got it right now.
I've done a test and it's negative. This is all just so confusing and so complicated, I just wish I could see the wood for the trees. I take regular vitamin D supplements and always have as I am always at the low end even on supplements. I'm deficient if I don't take supplements and have been like that for years. I'm assuming the NHS don't test for all the mineral defficiences? I've spoken to my gp about taking extra supplements and she's already told me not too! I'm just so at my wits end as a I have a small toddler and I just can't be there for her like I need to at the moment. I need a concise plan of action to sort it out and I feel like I'm just flapping around not doing anything.
You're doing the best you can! You're learning. Don't be so hard on yourself. It's not an easy situation.
OK, so you're taking vit D. That's good. But, are you also taking it's cofactors: magnesium and vit K2-MK7?
No, it's not easy. It is complicated. And sorting out the supplements is also complicated. But, don't ever ask a doctor for nutritional advice, they know nothing about it. But, they do have some very weird ideas! If you'd heard some of the thing doctors told me I should be eating to lose weight before my diagnosis! Totally bonkers! lol For nutritional advice, come on here.
I'm assuming the NHS don't test for all the mineral defficiences?
Depends on the doctor. With one doctor I had he wouldn't test for vit D because - he said - everyone is deficient! He wouldn't test for iron because it's 'the same thing as ferritin'. Not. He wouldn't test for folate because you only tested for that if you were deficient!!! I never did manage to work that one out. How do you know you're deficient if you don't... Oh, forget it! 😂
I promise you, it does get easier. Little by little things your reading will click into place and you'll have a succession of light-bulb moments where you cry 'Eureka'! No, sorry, you cry 'oh yes! That makes sense, now.' It's complicated but not impossible to understand.
I have a small toddler
Are you completely on your own i.e. no close family, supportive friends? You need help - what is available?
I had "covid" end of Feb 2020 - it struck me in the guts and along with many people I know who had the natural version (i.e. pre-vax) "something" seems to hang around waiting for the right conditions (meaning being a bit run-down etc) to covertly rear it's head once more.
My GP haa said private tests arent done in the sameab as the NHS ones so arent accurate enough.
Monitor My Health does private testing in an NHS hospital lab in Exeter
Thanks for letting me know, my GP said the same thing.
Have you been tested for Hashimotos? Could your symptoms be due to a flare in your thyroid antibodies?
Hey, yes, I've got the Hashimoto's antibodies. If it's a flare, maybe I do need to go up? Even though it felt I was on too much?
I don't know enough about Hashi flares to advise you SlowDragon greygoose
Hopefully SlowDragon or greygoose will come back with their valued advice.
Wishing you some peace and calm. Hugs xx
Antibodies don't flare and they don't cause symptoms.
Maybe you're right greygoose. I've seen whatever happens called that on here, and as I said to the OP, I don't know enough about Hashis to advise, and tagged you and SlowDragon. Thank you for coming with your advice.
Yes, I understand. It's very unfortunate. The mechanism I was talking about used to be called a Hashi's 'hyper' swing - which perfectly describes what it is. But, then - I don't know when or how - people started talking about Hashi's flares meaning the same thing. But everyone got confused and muddled it up with 'flare up', like you might have with arthritis or something, and no-one really knew what it meant or what anyone else was talking about when they used it...
But, in any case, it has nothing to do with the antibodies.
Mmm very interesting Katie, those set of symptoms, 'came over all hot etc', Ive had that twice and felt like was going to pass out, eyes went weird, I even had loss of urine, but anyway an ambulance came and my heart was tested, paramedic said I defo had a chemical imbalance in the body, went to A+E, nothing big turned up with testing, but the doctor on discharge did comment my thyroxine wasnt high enough, think I was on 100 mcg daily, but then he was over-ridden by another doctor who said it was fine. I didnt know whether these episodes are syncopes'. I dont have a thyroid and am still on 100 mcg. Used to be on a lot more and had none of these things happen.
Thanks for your reply. What happened in the end? How did you sort it?
It wasnt sorted, but not had that certain set of symptoms again thank god but wouldnt be surprised if it happens again. Often though I feel a spaciness where it feels like floaty dizziness and feel not walk straight and vision can be disturbed.. I personally would blame it partly on adrenal fatigue because havent got a thyroid, and the first Professor I saw said I had a 'mild' ACTH deficiency. But docs also reckon Im on too high meds at 100 mcg a day. Its been a 15 year journey and am on 3rd hosp opinion. I used to be perfectly ok when was on 150 or 200 mcg daily. Its interesting when I see that other people have same horrible symptoms, and if they get answers or a resolution.
Sorry for the late reply, I didn't see I had one. Have you symptoms cleared up at all? I just can't take some of the symptoms for prolonged periods of time. I sometimes think am I over medicated and I need way less levothyroxine in my body. Maybe I need to be on more? It's so hard to know. I just need these symptoms to do one lol. I've been having really bad night hallucinations as well for no reason. They only happen at night and I'm a really bad sleeper anyway. I did a salvia test for cortisol and interestingly my cortisol get higher during the day before dropping which its not meant to do but I think that might be because of the sleep issues, so my body over compensates.
katiestorey you've gotten great advice from greygoose and slowdragon, and I don't want to muddy the waters, but I'll just tell you a short version of my experiences, which have a very happy ending:
I had a terrible time getting my thyroid sorted---was quite ill and miserable, and was finally put on levothyroxine 75, 100, 125, 150 over time, and just kept feeling worse (temporarily better, but ultimately worse). My T4 and FT4 were super high, even at times above range, but my T3 and FT3 were under mid range. TSH was "in normal range" (not "normal" and not a range, sheeeeeesh, but that was all the ridiculous doctors would look at/use to treat). At that time I was working in the UK and had a long wait (6 months) to see an endocrinologist. So I went private, went to London actually and got an immediate prescription (well, I had to ask for it, explain conversion to the endocrinologist, yep, and agree to pay for it myself---fine) for liothyronine, or T3. Also is sometimes called Cytomel. Because dosing is coordinated with T4 (levo) dosing, they will usually start you at what often turns out to be an insufficient T3 ratio. Typical ratio is 5-1 or 4-1, for example: 100 levo, 20 liothyronine. That was not not nearly enough for me. (5-1 or 4-1 will work for some people. If you feel better but not great on 5-1, for example, you could explain that and ask for an adjustment tp 4-1, and so on.) So I went back to London and argued for 75 levo and 50 lio. And eventually the doctor agreed to drop the levo completely, went up to 100 lio; then I felt a bit fluttery in the heart and a bit warm and revved up all the time, so we brought it back down to 75 lio. This is called T3-only therapy, and a few people need that, but I understand that most get there by staying on a mix on T4-T3 for a while. Be prepared to argue for higher lio ratios as you reduce levo, if this happens to you.
WITHIN ONE WEEK of getting the levo-lio ratio right (it will differ slightly for every person) I started to get my life back. Within two weeks of increasing the lio and reducing the levo a lot, I felt so much better it was like being given a new life. This forum helped me get sorted and helped me get my vitamins and supplements in balance. That also took some private testing. All this is expensive, but 100% worth it to be healthy and feel good. I'm no longer in the UK, but the doctors here (USA) have continued the plan and I'm very grateful.
It takes a lot of patience and persistence, and when you hit a dead end, you build another road for yourself. Very hard to do when not feeling well, but well worth it in the long run. Best of luck to you.
Thank you so much for taking the time to reply. I've actually booked in to see a private endocrinologist in London who deals with T4/T3 medications, so we shall see. I can just not fathom how doctors and specialists know so little about the thyroid! My symptoms have calmed down allt, since I went back down to 100mcg, so I knew I was taking too much! Can I ask, did you ever suffer with bad acid reflux when your thyroiid was acting up? I'm now having a massive breathing flare up as I think my throat is swollen from acid reflux.
I’ve never had this problem but it sounds unpleasant! Glad you’re going to get the consultation you need. I hope they find the right solution for you!
Not what you're looking for?
You may also like...
Really struggling, please help - T3 in pregnancy
Help please, really struggling w adjusting meds
Really struggling with Hashimotos - I think I'm having a flare up...
My Daughter is really struggling
Help. Feeling really bad
I'm new here, struggling with underactive thyroid, and blood tests.
Really struggling with Levythyroxine symptoms 
I'm new! Help with my results...
I need advise because I’m really struggling with life right now. 
Help I'm on 350mg of Levo! 
