I see from a post that t4 is best taken at night. I just couldn't go without something to eat before bed. I have to eat a few small meals throughout the day for energy.
If I don't have enough calories during the day It wakes me and I have to get up to eat . I made a jacket spud in the microwave at 3 in the morning once.
Any suggestions please?
Thank you
Everdean
Some people find it better at night but it's not right for everyone nor is it set in stone. Just take the T4 when it suits you. It's said to be fussier than T3 so it's best taken one hour before or two hours after food.
Thank you Seaside Susy.
I think it’s very much trial and error Everdean; some members take morning, some evening & some split doses throughout the day.
Remember to retest in 6-8 weeks after you’ve been on this new dose. I hope that this lowered dose of Liothyronine gets your T3 back in range & you have no more issues with palpitations etc. 40mcg of Liothyronine is still a substantial amount (even though your endocrinologist prescribed 60mcg)
Yes it is Buddy195. Dr says if I still feel rubbish after a couple of weeks. Then we will review. She assured me that I will still get my t3 prescribed. I was afraid of loosing what I need. Thanks for your reply.
Your doctor wants to review after a couple of weeks. Later you talk of trying something for a week or two. It is usually recommended that we let things settle and retest after 6 to 8 weeks. 2 weeks is not long enough for your adjusted dose to settle down. Don't give up too soon.
I was delighted to read of another person like me. I am exactly the same, digest food very quickly and cannot go to sleep if I feel the slightest bit hungry. I assume you are also very thin? I think we are fairly rare however.
Ha! Ha! Well people say I am thin. I'm certainly not overweight Hennerton. 😀
Haha I have a ridiculous appetite but certainly not thin like used to be.
This is a high dose, equivalent to 220 mcg levothyroxine. Do you need such a high dose? Fine if you do but if you are not sure try a lower dose either reducing the levothyroxine or the liothyronine.
Well I feel a drop of 20 MCG last week might be enough for nowjimh111. Which I'm taking in 4x split doses to even things out. It was the Dr suggestion to add to that 100 MCG t4.I also noticed that she had written on my notes after, that possible cause of palpatations was that I ," flip flopped" around with meds. Which is untrue. . .
I will try these out for a week or 2 And see what happens.
Thanks for your advice though.
I’m not sure if I got this right but are you saying you reduced your L-T3 by 20 and added 100 L-T4? If this is so your doctor has increased your overall dose by 40 mcg L-T4 when it would seem you need to reduce your dose. Bear in mind that T4 has a long half life so your T4 levels will build up more slowly than your T3 will fall. Thus, it will take a few weeks before your overall hormone levels increase.
I’m getting the impression that your doctor doesn’t know what she is doing.
jimh111 is so right Everdean. As members suggested in your last post (when you were concerned with over range T3 & needing to go to A & E with palpitations) your endocrinologist has prescribed a very hefty dose of Liothyronine, especially for a slim female.
Also I remember that when I was steadily increasing my dose. I felt better on 2 than 1and 3quarters. Then I steadily went to 2 and a half and I was ok on that too. .. I finally reached 3 when I had COVID so I felt I'll anyway. So it wasn't till after that, all this started. Hence going to 2. X t3.
I’m assuming you are saying that your Liothyronine tablets are 20mcg each & you are currently taking 2 (ie 40mcg) plus 100mcg Levothyroxine. As tattybogle has outlined, you are currently over medicated and need to SLOWLY reduce (to get your T3 back within range). I’m not surprised you are feeling woozy Everdean. I hope this feeling passes as your T3 levels lower.
so have i got this right Everdean ?
originally you were prescribed 60mcg T3 (when previously had only been taking 25mcg T3 that you got from abroad)
you tested and fT3 was (not surprisingly) over range, and advice here was to reduce T3 a bit, so you did 50mcg for a few days , but then ended up in A&E with your heart going nuts.
Now Taking 40mcg T3...ok
BUT
I really don't understand the logic of the GP /endo? adding a whole 100mcg Levo to this all in one go ?
I would have though adding 100mcg levo to a slightly reduced dose of T3 just runs the risk of becoming overmedicated again very quickly ?
Why are they giving you such high doses of T3 and now Levo too, straight off the bat without titrating upwards... which is the usual method of doing things ?
p.s ..just noticed the 'baked potato at 3am' comment in your post above ...Were you needing to eat so much when you were on just 25mcg T3 ? .
.... have you considered whether needing to eat so often might be because you are overmedicated already on just the T3 dose you are taking . never mind adding 100mcg levo to it ... the combined dose of 100mcg T4 + 40mcg T3 is probably 'more' than you were on when you ended up i A&E on 60 ish of T3 only .
Honestly tattybogle. I just don't know. She said that taking t4 might regulate my heart and if I don't convert any way. I won't overdose???????I'm also very cross with the Endo. He doesn't want to see me. And he's twisted things to make him look better.
Fed up with the lot!!!
She did admit she didn't know how to treat this type of thyroid problem.
edited the above reply to add a bit .
What 'type' of thyroid problem is it exactly ? ....honestly , it seems to me the biggest problem you have at the moment is 'whoever is doing the prescribing' .. they seem extraordinarily reckless with your health.. and your heart .
I would have thought it much more likely that giving you 60mcg T3 without testing on the way up is the issue with your heart palpitations than anything else ...
Forgive me if i sound a bit "!!!!" ..... i'm not shouting at you ... i'm just gobsmacked anyone in the NHS is prescribing doses like this without doing it gradually .
It's fine ! I have the faulty Dio2 gene from both parents. So limited in converting T4 -t3.
That has a relatively small effect , it doesn't mean you don't convert 'any' T4 to T3... and it certainly doesn't mean it's ok to add Levo any faster than you would for anyone who doesn't have one or both of these Dio2 variatons.
I rose gradually on my own. Apparently Endo agreed with the head of the laboratory who does our practice that doing a blood test is pointless. Have to go by how I feel. . Endo appointment was by phone 2 years go. After I sent in the report on my genes.He just said he didn't need to see me but take 1 x20 mg 3xtimes p dayThrn my GP text me and said I had a choice.
2t3 and 1 t4 OR 3tr. I said "I'm not an expert. But if I don't convert ,Why have t4?"
So he just said that's fine.
Now apparently. The Dr says the Endo wrote in a letter which I never received, that he suggested the benefits of T4 and that I had chosen t3. So in other words putting all blame on me if it didn't work.
😞
is this an NHS endo ? or somebody you saw privately .
Has your GP contacted this endo for further guidance now ?
.. and does the GP agree with the 'blood tests are pointless' approach ?
Yes he agrees with the no blood tests. Don't really know if he'd contact ed Endo.
An NHS GP , willing to prescribe 100mcg levo to a patient who was just in A&E with unexplained high heart rate ... who is already taking a substantial does of T3 and without wanting to see blood tests to titrate it ?on the basis of a 2 yr old letter ...
.... all extremely unusual .
You said she assured you you would still get your T3 prescribed .. is the GP prescribing the T3 on the NHS then ?
Yes because the Endo prescribed it.
NHS
My heart rate had come right down now btw. The palpatations are still there occasionally but the wooziness still lasts all day. Thinking it could be something else now. ??
I expect the heart rate has come down because you reduced the T3 a bit a few days ago . I Still don't see how adding a whole 100mcg T4 is a good idea though..... quite likely to make the heart rate go right back up .
Even people who are 'poor converters' do still convert quite a lot of T4 to T3... nobody 'doesn't convert any at all' ... that is a misrepresentation of what 'poor converter' means .. it means they are not converting as efficently as some other people . it does not mean 'they can't convert any at all'
i hope you're ok over the next few weeks , but be careful... i think it's safe to say most of us on here would not advise adding so much Levo all at once .......i'd feel it was safer to add no more than 50mcg and then wait several weeks to see effect it had on how you feel and on bloods before considering whether to increase further.
Thank you all for all your advice . I will reduce t3 by 10 mcg and try 50 mcg or perhaps 25 mcg T4 . And see how that goes. Thanks again.
50 mcg L-T4 plus 30 mcg L-T3 will equate to about 140 mcg L-T4 which may be a touch above average dose but not far out. You could see how you do on this and then in the longer term adjust up or down, see if you can be OK with less T3 and more T4.
You are lucky in getting the NHS to prescribe L-T3 so don't rock the boat on this, just adjust your dose to a safer level and keep a stash of L-T3.
I haven't started t4 yet jimh111. So do you suggest my dropping even more t3 now?
I assume you are currently on 40 mcg L-T3. If so I suggest you could for example aim for 50 mcg L-T4 + 30 mcg L-T3. To do this I would start taking 50 mcg L-T4 (you can halve 100 mcg tablets) and over the next week or so gradually work down to 30 mcg L-T3 and see how you go. Due to the different half lives (T4 7 days, T3 1 day) your fT3 will fall quicker than your fT4 will rise.
You could see how you do on this with perhaps an initial aim of gradually migrating to e.g. 100 mcg L-T4 + 10 mcg L-T3 as this would reflect what your thyroid would normally secrete. I would anticipate most people would be OK on this or a similar dose. However, some people need a higher proportion of T3 but I feel these are a minority and as an initial target it seems more sensible to take doses that reflect what you would have got from your thyroid.
Ok jimh111 thank you.
I think the advice Jimh111 and Tattybogle give excellent. I’m also a poor converter and had reduced to 100 mcg T4 to placate the TSH gods (really low results suggesting wrongly I was over treated). but demanded to see an Endo who added 10 mcg T3 I got palpitations on just 10 mcg T3 so reduced to 5 mcg split in half. I’ve added 50 mcg T4 extra per week as I checked back and I had been on 150 -175 mcg T4 years ago and felt okay.
Endo said that T3:T4 is approximately 1:4 yes your dosage together is extremely high. Maybe okay for a male though.
That's very helpful Catseyes. I just wonder if I can adjust these meds myself with advice from all you lovely people or should I consider going to another Endo? Which would be private. And expensiveI am getting really stressed about it. I've just realised that the reason I feel worse in the morning may be because I'm taking my 1/4 t3 dose on an empty stomach, and not eating for an hour. The other
3 doses , I'm not so strict about as I was told that t3 will be absorbed with food.
Few things to remember ...every change in meds will take 6 weeks to settle. So whatever you decide try and stick to it and don’t expect to know how you feel in a couple of weeks. Think of T4 as slow release and T3 as fairly immediate.
Jimh111’s advice to aim for 100 mcg L- T4 + 10 mcg T3 seems sound but small increments advised. That would approximate 140 mcg if thyroxine.
Some people do well on T3 only ...we’re all different!!
I tried reducing T4 to 75 mcg and maintaining 10 mcg T3 but still had palpitations which I hated so back up to 100 T4 and 5 T3 with weekly addition of T4. Trying to bring up to total of 130 - 150 mcg.
It’s taken a year of gradual adjustment - up, down and sideways - to get to the level I’m really happy with. No palpitations but none of the hypo symptoms either .
Going to arrange another blood test soon as will have been on current dose for quite a while and have learnt to go by T3 and T4 readings and ignore TSH which has been the root of my problems for years. (Except with my regular old doctor who also ignored TSH and was guided by how I felt!! ). Good luck!
Thankyou for that advice. Catseyes. I'm so glad you are feeling much better now.
I have to take gaviscon advance before I go to bed which doesn’t agree with T4, so I set an alarm for 2-3 hours later, usually taking it around 2 in the morning, I struggled getting back to sleep at first but now I’m used to it and manage to get back to sleep. Put your tablet and a glass of water on your bedside table ready so you don’t have to get out of bed.
Hi Kimkat.. I just picked up your reference to Gaviscon and thought I’d tell you my story. I used to take - from very young - Andrews Liver Salts, Settlers etc ending up 50+ years later with Omeprazole daily in increasing doses and cameras down gullet etc. due to worsening acid reflux. The specialist I saw never talked about diet ..in fact he looked at me blankly when I broached the subject!!
I always had a good diet with loads of veg and whole meal foods and pulses but I noticed that any biscuits, cakes, pastry and anything made with refined flour and sugar were the worst. They were the first to go no matter how small the amount and I really started to feel better.
The trigger came when I developed kidney stones. Unbelievably painful and off work for a week. I read about a link between. Omeprazole and kidney stones which made a lot of sense. I was still eating white toast but as it was organic thought it might be okay but obviously not so kept on with wholemeal but still had to take some Omeprazole. The breakthrough for me came when I changed to sourdough bread (and now pizza, crumpets, bagels etc.). In the last five years I’ve had maybe one Omeprazole if that, in a month and keep them for when I occasionally eat out or am offered cake but even then don’t often need them.
Contrary to the adverts it’s not the curry, tomatoes, vinegar, oranges etc that increase stomach acid but the pastry, cream etc which requires the gut to produce more acid to break down!! And of course antacids are not recommended if you take thyroxine!
Sorry I’m on a bit of a campaign as drugs companies must make millions from people suffering heartburn as I did for decades and don’t want others to suffer!
Thank you for that info catseyes, my acid problem arose from taking too many NSAID painkillers for chronic backache, I’m supposed to take gaviscon after every meal and before bed but I am aware of the problems it causes, so I only take it just before bed then 20mg of omeprazole before breakfast. That’s really interesting what you have written and I’ll try reducing my intake of bread, biscuits etc, however because I’m conscious of my weight, I eat very little ‘nice’ food, however I’ll be more aware of what I do eat. Thanks again, very interesting.
So sorry to hear that. My nephew had terrible problems taking NSAIDs for spinal probs and had his stomach removed. He’s now now had this reversed but it’s been a long haul of a decade. There should be far more warning about the dangers. I can’t take any aspirin related pills at all apart from occasionally an ibuprofen with paracetamol for knee problems but now I’ve lost a bit of weight they’re not nearly as bad as they were. For a few weeks after I had a stroke 2 years ago when I monitored my intake strictly (raised cholesterol) I lost a stone and knees were almost pain free. Weight has crept back so I should be more disciplined.
Unfortunately I think doctors don’t think of the connections between weight and the effect on joints and the subsequent effect of painkillers then antacids! It’s a bit of a vicious circle and hopefully I’ve managed to jump out of the ring though I must get to grips with my love of cheese and crisps !!
Oooh, cheese and crisps and cheesy crisps, heaven. Love em but I do restrict them, I don’t know why because whatever I eat or don’t eat I put weight on, can’t even look at a cake 😩
It’s a vicious circle because I really could do with much more exercise and of course pain stops you wanting to exercise. Need to get my bike out really. I do avoid big meals like I used to have and try to have main meal earlier in the evening or even late afternoon. All these little things and changes (I hope!) add up over time. Could you in anyway be undertreated or not convert T4 well? I benefited from small addition of T3.
I take mine with half my T3 dose an hour before getting up, so set alarm early and then sleep on. I too like my nightly snacks and sometimes have toast in the middle of the night and could never guarantee waiting an hour to take my meds!
I had a total thyroidectomy, so have no thyroid gland. I weigh 9 1/2 stone. I am stable on 75mcg Levothyroxine and 10mcg Liothyronine (T3). It is my understanding that t3 is 4 times stronger than t4. That is a huge dose, please check with your consultant or GP.
i take levo & lio on empty stomach usually early in AM when i wakeup to go to potty. At least 4 hours after eating. I try to give it at least an hour before i have breakfast. It's kept my levels pretty steady. Good luck.
Would agree with tattybogle and jimh111 its ridiculous to start on 100mcg levothyroxine
Starting on 50mcg maximum
Also which brand of levothyroxine have you been prescribed
Many people find different brands are not interchangeable
Teva brand levothyroxine upsets many people
Sometimes Im given Teva sometimes Morningside Healthcare.
That is liyothironine. Not got t4 yet
It’s Teva levothyroxine that causes issues….not Teva T3
But it’s never a good idea to change brand of T3 ….try to always get same brand T3 at each prescription
I don't get a choice Slow Dragon. It's what turns up. I could ask them though. Thank you.
Small independent pharmacies are often more helpful
You can specify which brand of levothyroxine or T3 you would prefer
GP can write on prescriptions which brand you need
Always check the bag re the brand before leaving the counter at the pharmacy
Ok thanks. Will do.
T4/t3
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