I was started off on 125mg of Levothyroxine after a total thyroidectomy 5 weeks ago. I have been told on an earlier post that people react differently on different brands of levothyroxine. I have just noticed that my 100mg are Accord and my 25mg are Wockhardt.
I noticed 2 weeks after my operation that I crashed and it felt like I had a lump in my throat which seemed worse than after I’d had the operation.
Has anyone else experienced the feeling of a lump in your throat whilst taking Accord? Is it ok to swap & take Wockhardt?
Thank you
Written by
Josie2
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Wockhart is the standard supplier of 25mcg tablets. Most other brands don't make those. Accord seems not to cause issues for most, but let's see what others say.
I'm amazed they started you on 125mcg. Most struggle to get started on anything higher than 25mcg. But for you, this is all early days yet. You should just stick with it all for a bit longer before getting a blood test to see what's going on. We like to hold out at least 6 weeks from a dose increase or decrease before we change anything. It takes that long for Levothyroxine to reach it's peak and settle. Your body has had a major operation. A vital gland has been removed. You will take a while to recover from that and replacing a working thyroid gland with a tablet is not as easy as they would have you believe.
Yes I think that was the reason for my sudden crash, starting off on 125mg. I ended up in A&E with heart palpitations, jittery, sweating etc but never thought it could be because the dose was too high. Hospital never picked up on it either.
You will soon discover that the medical establishment is utterly rubbish on thyroid in this country. Very good at removing the gland or killing it with radioactive iodine but then they wash their hands. You will find all the help and advice you need here.
Are you feeling less jittery now? It could be settling down if so.
I am a little bit less jittery but I think it’s because I reduced my dose to 100mg. I know I shouldn’t have but I couldn’t continue with all the symptoms, it was horrendous. It explains why I was ok for a few weeks then it hit me, I guess it was a build up. I still think my dosage is too high but I’ll have my bloods done first. Thank you for your help.
What that means is that when you take a pill, half is left 7 days from now.
Further what that means is that as you take a steady dose every day, there is an overlapping ebb and flow where it takes 6-8 weeks for this new hormone running through your body finally build up to a stable level in the bloods.
The vast majority of us have symptoms in those early weeks of a new dose where we are convinced it’s all wrong! Palpitations are one of the most common we hear about. We’ve been there - convinced we are going to have a heart attack!
When you drop your dose in the middle of this 6-8 week period, it’s like tapping the steering wheel of a big ocean liner. Yes, you have less in your body that day, but also, that dip impacts you for the 7 days after and layers onto the weeks after that.
Further, Levo doesn’t work alone. It is part of a long and complicated chain reaction that changes other hormone levels in your blood.
Long winded way of saying that in most peoples experience here - those 6-8 weeks on a new dose are volatile even when you are actually on the right dose.
To pile on though - yes! 125 is a lot all at once! Many of us here start on 50 mcgs a day… and as with me, I’ve taken a year to increase by 25 mcgs or even 12.5 mcgs a day - and it’s only a couple weeks ago that I got up to 112.5 a day.
Also… week 5 has been known to be the storm before the calm… we see week 6 settle, and by 7 or 8 and even 9 weeks in many of us see a huge calming down. I didn’t say that all symptoms go away… but it’s a marked calm in comparison.
If you have made it to 5 weeks on 125 mcgs…. How many days have your dropped to 100?Especially since your visit to the emergency room revealed no underlying heart issues…. Youve made it so far and it would be a shame to waste all that patience you had when you are so close to being able to get your thyroid hormones tested again!
Blood tests are not reliable until you’ve been on a steady dose for at least 6 weeks.
I dropped to 100mg on 23rd August. I was literally on my knees, shaking, panic attacks, jittery, felt like I couldn’t breathe. All the symptoms it has on the leaflet. I honestly couldn’t have continued on 125mg, I literally couldn’t even get off the sofa without help.
We’ll try to hang in there until October 4th or your blood tests won’t be helpful for evaluating whether you are on the right dose or if you need a decrease or increase.
Keep in mind that guidelines say that a ballpark target is 1.6 mcgs of Levo daily for every kg of body weight. Not a rule, but a helpful bit of info to keep in mind.
I have zero personal experience with a TT, but I have had a few surgery operations.
Just from a common sense point of view - even though it can takes weeks to heal… and even years sometimes for surgery sites to be sensitive. That healing process should not be going backward. If things are getting worse … or not getting better at all… or brand new symptoms are popping up… you are absolutely wise to be on alert and watch.
That’s not to say every discomfort you feel is soMething to worry about. It’s not.
Starting on Levothyroxine to replace the thyroid hormones your body is no longer making… well, that’s the vast majority of us on this forum and you’ll find it reassuring to tap into our shared experiences.
From a TT perspective - others are weighing in with relevant experience. You can also use the search function above on this forum and search on “thyroidectomy” to see a decade of those who have come before you! You might get a sense of what’s normal and what’s not by perusing those.
I just have food for thought and hope others reading this will weigh in as well.
Lips tingling…. Anyone know if it’s worth looking into calcium levels and parathyroid damage?
Thank you. I’m going to make an appointment to see the doctor tomorrow. I didn’t have my surgery done at nhs hospital, they referred me to the Nuffield.
Sounds like where your thyroid USED to be? Or close to it. You’ve had a significant part of your neck/throat removed!
There’s a lot of layered tissues healing and regrowing… and it will take a while to do that.
Again - just from my other surgery experience not a TT - if you feel it is getting infected… warm to touch, and reddish skin over the area, increasingly painful to touch, those are signs of infection that should be tended to. It doesn’t sound like that to me based on what you’re saying.l though but of course I don’t know anything but what you’ve written.
I’m a little out of my personal experience here, so take it all with a grain of salt! Of course I might be off base as I’ve never had a TT myself.
That’s important! I hadn’t looked at when you joined the forum and now see you’ve popped in here after a journey with your RA starting 10 years ago.
So let all these replies to your last two posts here sink in. Many of us when we start our thyroid journey feel like we are drinking from a fire hose!
You should probably update your profile to make sure you get relevant advice here.
None of us are doctors, as you know, but sharing our experiences has made many of us find a path to managing our conditions that we haven’t gotten from the healthcare system alone.
That being said - fewer of us here will have a co-incidence of RA, and fewer of us will have had a TT.
Lots of our experiences even without those will be hugely helpful to you, as simply having to replace your body’s thyroid hormone is something almost all of us here are managing.
Well, sorry to swim against the tide, here, but to me, 125 mcg as a starter dose, after a TT, doesn't sound that excessive. Starting on 25 mcg or 50 mcg is for people who are hypo. I'm assuming you weren't hypo before the op? You don't say why you had a TT. Did they do full thyroid testing beforehand?
The post TT dose is usually based on weight, and titrated up or down from there. Have you had a blood test since starting levo? If you started it 5 weeks ago, you were almost at the 6 weeks retesting mark. Now you've reduced your levo yourself, you'll have to start the countdown all over again, but testing before six weeks won't give you accurate readings.
Having said all that, I have to confess I haven't had a TT myself - my thyroid has been killed of 'naturally', by Hashi's. But I'm just going by all the many, many posts I've read on here.
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