hi,
i have recently been been going through the transition of switching from levothryoxine alone (125mg previously) to a combination of this and liothyronine. I was given too much of both at the beginning of this transition and was told to stop Levo completely and I've only been taking 10mg of liothyronine for the last 4 days.
Im starting to feel tired and colder (as I am now under replaced), but I am still feeling a pounding in my chest.
has anyone else experienced this side effect of liothyronine and does it get better?
im desperate to stay on the T3 as it helps a lot with the tiredness and brain fog and Levo alone just doesn't work for me.
any help will be appreciated!
Sorry I meant to add- I have been told to reduce both meds temporarily, to let the overdose leave my system then gradually increase it again
Hello Sayhitocaz:
I am only on 5 mcg of Liothyronine and I do not have a pounding heart rate. I have been on it for many years. I am not on any T4 as I do not convert T4 into T3. I feel maybe some of the reaction is to the Levo you were on before plus any dose you had recently, meds have a half life.
In some people maybe the combo is a bit much for you. It can take a while maybe several weeks to lower your T4 level. So if you were told to reduce your Levo and Liothyronine that would allow the extra to reduce down.
Levo never worked on me, and it took years to figure this out, and maybe it is the same on you. If it is not converting maybe you should bring that up to your doctor. It happens in some of us.
When you add the Levo back in do take it at a low dose and keep it at a low dose for a week or so, and then up it in small increments. You need to find the right dose and by doing it slow, you will notice the changes better. Also the Levo come sin 25mcg, then 50mcg, then 75mcg - so you may need a dose in between like 60mcg so by doing it slow, you will be able to tell.
I hope this helps.
Shelly
Hi Shelly, sorry I didn't see your reply as I didn't receive an email notification for some reason!
Since posting this I built up to taking 20mg of lio wit 25 of Levo again and my heart went crazy and scalp started burning and hair loss worsening. So I am now taking today 10mg of lio with 75 of Levo (I believe it still needs to increase the Levo slightly to achieve the equivalent dose). Still getting the pounding though, so maybe 5mg is all I would be able to tolerate. I had to take the last week off work as I felt so exhausted (and cold and hair falling out so felt very depressed). I find lio has a good impact on the fatigue/brain fog and mood so I'm reluctant to give it up completely as Levo just does nothing for me.
Im going to request the DI02 test to check and see whether I convert T4 to T3 as I feel this is crucial in my treatment going forward. Got a private appointment with an endo in two weeks time that I am paying for as I am so desperate now for help.
is 5mg all you take? That seems a very low dose? I was told by my GP that most people need a bit of T4 in their system as well as T3- what is your opinion on that?
thanks for taking the time to reply, it is so lonely sometimes between doctors appointments I feel very helpless and rely on these forums for advice when things go wrong and I can't access any advice for a while
Hello Sayhitocaz:
Sorry to hear your heart is pounding. Don't forget T4 Levo will convert if your thyroid is working well enough into T3. T3 or T4 in large doses could cause it.
Yes, I am on 5mcg of T3 Liothyronine, and my TSH has been good. I did try 10mcg and it was too much for me. It all depends on YOUR BODY.
So I just need that small amt. We are all different so maybe you need 50mcg of Levo and 5mcg of Liothyronine. Also get a pill cutter, some of us need to cut up a pill and make a dose smaller or bigger. It is hard since we may fall in between a pre-made dose. example 35mcg Levo or 40mcg levo.
Try this, take the LEVO in the morning and T3 at bedtime so you don't get a big dose all at once. You need to play around with the doses and when you find one that works, then stay there on that dose.
Doctor's do not know the exact dose you need. They base it on weight and symptoms and then we need to adjust it. Many of us have had to do this so it is trial and error a lot.
Keep us posted,
Shelly
Hi Shelly,
yes all the above makes sense and yes you may be right about the Levo converting into even more T3- I need to get this checked ASAP to try and get to the bottom of it.
I bought a pill cutter recently and I have used it a lot during this experimental phase - I've been cutting the 20mg tablets in half.
yes I agree that as well as dose, I may need to adjust/spread out the drugs throughout the day so I don't get a big surge of hormones at once.
thanks for your help- will let you know if I have any luck over the next couple of weeks!! Fingers crossed
Hi Shelley, did you mean take the T3 at night? With the kickstart T3 gives to the metabolism and energy levels, logic suggests it would be better to take it in the morning so one gets the benefit of them. Or does logic not apply here?
Hello Barbara:
Caz could take it at morning if she prefers or in the evening/night as long as she spaces them apart. I take mine at night. Trying to avoid the Bolus-BIG DOSE, all at once and it may help to space it.
Shelly
Hello Shelley, thank you for the clarification. I wondered, because for me splitting my NDT dose in the ratio of 2/5, 2/5, 1/5, spaced 6 hours apart works best. Barbara
Sorry, I meant add: my preference would be to take the T3 in the morning an hour before breakfast and the T4 at night 4 hours after eating. This keeps the medication spaced out like you suggested.
Hi Barbara:
That is what I mean by trial & error, it would be okay to space it like that. At least 6 hours apart. Caz, could do the T4 Levo at night, and it would be fine and maybe help eliminate the pounding heart. I just think it is too much all at once.
She also will have to find a dose that works for her, which is the hardest part. The doctor has prescribed a big dose for her which seems to be the main problem.
XO, Shelly
Hello Shelley, you're right getting the dose right is tricky and takes time and trial and error. When I was on levo, if asked to increase the dose by 25mcg I used to chop a 25mcg tablet in quarters and increase the dose by a quarter every two days - that way I avoided the swings and side effects that resulted from increasing the dose.
XO Barbara
Hi Shelly, totally agree that it's about the right dose, then maybe different times of day would also help.
I've heard a few people say they feel much better taking levothyroxine at night (not sure why but it's worth a shot!).
I agree that the dose may be too big. I don't know whether you have had any dealings with the forum "healthunlocked" but they were suggesting to start with 20mg lio and increase my Levo to 100mg!! Baring in mind every increase I did made the problem worse, I thought that was very bad advice- I much prefer this forum and the people on here are generally very knowledgable about such issues
Thanks for your comments Barbara, I've also heard a lot of people take T4 at night- how do you find it? Did you find that taking all the meds in one go in the morning was too much? Did it have a positive difference taking them at these times?
Hi caz, I've read somewhere that the body processes thyroxine better when asleep. That is why I suggested taking the [readily available thyroid hormone] T3 in the morning and the [needs to be converted by the body] T4 at night. It seemed the best way of juggling the variables. (Though vice versa if you work shifts snd sleep during the day.)
Oh right, I will definitely add this into the list of things I am going to try as I find Levo makes me feel groggy, so maybe that might help me with this too if I take it at night.
thanks
Hello Sahitocaz:
I used to be on Levo way back in 1987, (before my converting problem was discovered), and I took it at night. Mostly because of no food in your stomach and I have other meds in the morning I had to take.
I am for whatever works for you. That is why I say "Play Around" with it.
I would say, 20 mcg of Liothyronine is way too much and so is 100mcg of Levo. Try 10mcg or even 5mcg then later more than 6 hours or at bedtime do your Levothyroxine. T3 LIO is a very powerful hormone and is faster absorbed and more readily available in the body. So 20 mcg would put me in orbit....LOL.
The problem is doctors use guidelines and go by weight and symptoms. Some doctors start low and adjust upwards depending on the blood work. Some go straight in at a certain dose.
Our bodies have to be able to tolerate it all, so that we do not experinence bad or adverse symptoms. This is the hardest part of the disease and finding that dose is paramount!
I have been there and done that as they say. Do whatever makes you feel better and if you need to take the pill and cut it into small pieces then do it. I would add in slowly.
Keep us posted on how it goes, it is nice to see if we can make a difference and help someone.
XO Shelly
Hi Shelly, yes it's such an experiment most of the time. Dreading going back to work tomorrow when I'm feeling so awful. I'm not sure there is a great deal more my doctor can do for me and I'm not keen on him trialling these things when he doesn't understand it fully (through no fault of his own, he is not an expert). Looking forward to seeing the specialist next week and seeing if he has come across these issues with other people. I have a feeling they will try the liquid slow release liothyronine or NDT. I will start taking my Levo at night in the meantime to see if it makes a difference.
ill let you know how I get on!
Hello - I was on Levothyroxine for many years. A few years ago I started having a lot of bad symptoms. Really bad nerve pain in my feet, joint pain, vibrating nerves, restless leg syndrom, hair loss, being cold all the time. I tried increasing and then decreasing my medication and nothing worked. Recently, I switched over to a Nature Throid and all of my symptoms dissappeared and I was thrilled! Especially because of the foot pain. I could go on walks again! The only problem was that I was experiencing a bit of exhaustion so I started reading the forums again and found out that when you switch to a natural thyroid medication your T4 hormone can be dramatically reduced once your T3 levels go up. So I started splitting my medication and taking half in the morning and half at night. This helped but not completely. Then I read the findings from a recent study done on T4 only drugs vs. natural. The findings were that people felt better on the natural but were still lacking a bit on the T4 so they recommended supplementing a small amount of T4 to make up the difference. So, I tried it! I am feeling better than I've felt in years! I take 1/2 of my natural dose in the morning and 1/2 at night. I supplement with 1/4 pill (18.75 mcg) of Levothyroxine at lunch. I listen to my body and adjust my meds accordingly. Lots of people warn against this because they say you need to be closely monitored by a doctor. I disagree to some extent. In my experience the numbers on paper don't match the symptoms. If I'm feeling good, I'm balanced! If my hands and feet are tingling and I have restless legs, my T4 is too high. If my heart is racing for no reason my T3 is too high. I make adjustments while staying pretty close to my normal doses. I may skip the T4 only med and take it every other day. But for the most part. I'm feeling good and thought people should know. It's taken me a really long time to find this balance and I know how frutrating it can be for people who are suffering with this. It sucks! I hope this helps.