Posted , 5 users are following.
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!
0 likes, 29 replies
Tutu123
Posted
shellyC19 Tutu123
Edited
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
Tutu123 shellyC19
Posted
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
shellyC19 Tutu123
Edited
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
Tutu123 shellyC19
Posted
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
barbara98940 shellyC19
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shellyC19 barbara98940
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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
barbara98940 shellyC19
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barbara98940
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shellyC19 barbara98940
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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
barbara98940 shellyC19
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XO Barbara
Tutu123 shellyC19
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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
Tutu123 barbara98940
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barbara98940 Tutu123
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Tutu123 barbara98940
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thanks
shellyC19 Tutu123
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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
Tutu123 shellyC19
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ill let you know how I get on!
barbara98940 Tutu123
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Tutu123 barbara98940
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They have managed to track down my notes from the point of diagnosis eight years ago and my doctor reckons I was only borderline and my specialist was dubious that I ever needed thyroid meds in the first place - I'm totally devastated as they may never be able to take me off them due to being massively over-medicated for years. They are sending me for an ultrasound in a months time to rule out other causes (such as thryoiditis and thryoid nodules), as I don't have hashimotos, but the specialist couldn't even feel my thryoid gland on examination so he thinks these causes are probably unlikely too.
Im already down to 75mg of levothyroxine (was on 125/150 alternate days) and feeling pretty faint, but still early days.
They are also going to treat me for lymes disease (which I wasbt expecting). They said this causes similar fatigue symptoms but is almost impossible to diagnose so they give you a course of antibiotics for a month to rule this out as an additional factor.
In addition to this they will carry out a cortisol dexamethasone suppression test to rule out adrenal problems as my random results were double the "normal" amount.
I am relieved that they finally seem to be doing some investigations for me, I just hope they are not too late to put things right. If it turns out I do need some medication, they have agreed to trial me on NDT, but would have to pay for this myself which would be a shame.
How are you getting on hun? X
barbara98940 Tutu123
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barbara98940
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Tutu123 barbara98940
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The the reason for the quick drop in dose was that I reduced the Levo previously to 75 whilst taking the liothyronine, so thought it may be silly to increase the dose again, just so I can reduce it anyway, so I dropped the 5mg of lio instead. I wanted to just bite the bullet and let my body try and catch up over Christmas. But if I reduce it further, I will be dropping it much more slowly as like you say it is better to do it this way rather than a big drop quite quickly.
Ive not heard of that pharmacist but would be curious to find out - I'm always willing to try new things- does she have a book out?
caz
cindy72112 barbara98940
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Is it possible to pm me with the name of the pharmacist who cured her hypothyroidism with diet etc?
Many thanks
Cindy
barbara98940 cindy72112
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Generally I tend to use the ideas that are free and harmless - I need to do something to address the food allergies and intolerances I've been left with after being under medicated for hypothyroidism for 20 years (on symptoms, not blood tests).
At the moment she is giving a link to a free webinair during 18-25 January 2016.
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