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
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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.
Well 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 started on Levothyroxine a year ago i went back after two months and every thing was fine.But a few months later i came down to earth with a bang i had all the side effects i can honestly say i have never been so ill in all my life if you scroll through you will see i wasn’t the only person. Some people went to A and E they were so il i almost did myself i thought i was having a heart attack from the paplatations. I phoned my doctor nearly every day he offered me nothing.In the end he curtly told me over the phone to stop taking straight away. Thankfully it has been 2 months on thursday and i am going back for a blood test and praying he can find a tablet that suits me. So i’m sorry but i haven’t got one good thing to say about Levothyroxine.I hope you can get matters sorted out.
Thank you for replying. I was admitted to A&E twice with heart palpitations, shaking, sweating, feeling of being choked but not where my scar is. Tingling mouth & lips. I’ve had more blood tests, ecg etc done but everything including calcium was coming back fine. It was certainly scary & I’m not a person to panic.
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.
I had my thyroid levels done before the operation by my doctor. My operation was done privately in the Nuffield as it was the quickest place to get surgery. I don’t have access to blood results from Nuffield only from March with my doctor.
On 125 mcg levo? I very much doubt it. Your FT4 would have to be very, very, very high to count as a thyroid storm - and as you no-longer have a thyroid, it can't really be that, can it.
I wasn’t taking any thyroid medication previously to my operation. I don’t know about the hot nodule. I was feeling very tired & run down but doctors just kept saying my thyroid levels were borderline. This went on for a while and eventually they sent me for an ultrasound scan in May. I was referred within an hour of having the scan to see a surgeon in Nuffield. I had a fine needle biopsy taken at the Nuffield and then operation on 23rd July.
OK, well, it rather looks as if that was the case. But given those levels before the op, it's hard to imagine that 125 mcg levo is excessively high. Your body is used to high levels. Although one possibility is that you are a poor converter and your FT3 is now much too low - it's bound to be a lot lower than you're used to - and what you are experiencing is symptoms of under-medication, rather than over-medication.
I’ve managed to get an appointment to get my bloods done this morning & haven’t taken any levothyroxine yet today. Is there anything specific I need to say regarding my blood test or anything I need to ask for?
What time this morning? It looks like it's going to be too late for the highest TSH, that would have to be before 9 am.
You need to insist that they do FT4 and FT3 as well as TSH because the TSH doesn't give all the essential information you need - despite what doctors think!
Sorry I’ve just seen your reply. I had my bloods done at 9.30am, only appointment I could get at short notice but I didn’t take my levothyroxine before I went. I think I saw on a post to not take it before bloods.
When I had my thyroidectomy I was put on 100mcg straight away which I believe is the usual dose, I think 125mcg is too much to begin with and I am still on 100mcg 6 yrs later.
Hi Josie, I agree with Greygoose, 125mcg doesn't seem too excessive after a TT.
I had TT and bi lateral neck dissection and I was put on 100mcg. I experienced a whole range of symptoms, it prob took six months or so to settle down. I now take 112mcg daily. 100 being Accord and 25 Wockhart cut in half to make the 12.
I have only ever had bad reaction to Teva brand levothyroxine. Accord is now on my prescription.
The tingling in your mouth needs addressing right away. This is a sign of low calcium and is concerning after a TT as your parathyroids may have stopped working, or struggling to work after the stress of the op. I don't think this always happens straight away. So possible your calcium levels were OK when you were in hospital but may now need a little help. I would ask your GP or ring the consultant (secretary) who carried out your op and ask for your levels to be checked. There are not many medics who know very much about parathyroid function or symptoms. My parathyroids were removed during my op with one crushed back in. I woke up with pins and needles and a tingling mouth but didn't know to mention this until they asked me if I had had any of these symptoms. I needed calcium immediately. I take medication now.
It does take time for your body to settle down, you are in very early days. I knew nothing about the thyroid and it's function before my op but have to research and find out for myself as the medical personnel do not really have the time to explain very much and do not seem to be aware of the supporting features, such as optimal vitamins and minerals. Keep reading on this forum, and on websites, keep an open mind, and do what works for you. Everyone seems to be very different.
I would ask for vitamin D, calcium and parathyroid levels to be checked. Not sure if a GP can do parathyroid as mine were done via the thyroid surgeon requesting them. I was under her clinic for a year after my operation.
125 doesn’t seem excessive after TT. I was prescribed initially at 100 but went up to 125 after 6 weeks. What dosage of Calcitriol are you on for Vit D, and despite your calcium being OK are you taking calcium supplements - Calcium Carbonate tablets.
Severe vitamin D deficiency is significantly associated with the development of hypocalcemia, and vitamin D supplementation can help prevent this. You should have been prescribed Calcitriol to help with your parathyroid glands which will be struggling post operation. No Calcitriol and your calcium levels will drop quite quickly. My guess would be that your Calcium will have dropped significantly as well with the symptoms you’ve described.
As you are feeling so bad and have not been prescribed from operation I would suggest a high-ish dose of Calcitriol for a week or so (it think I was prescribed 6 x 250 nanogram Calcitriol daily for almost a week after my op reducing to 2 or 3 after 6 days. Also 3 x calcium carbonate tablets daily which reduced to 2 after 6 days.
Vit D and Calcium change a lot quicker than T4 and. TSH.
Don’t take normal vitamin D supplements. The Calcitriol is the D3 variant which is what the body normally converts internally. Also stay off calcium rich foods until your calcium levels stabilise.
I haven't had the surgery (yet) but found out a few months ago that my Thyroid has shrunk to virtually nothing! I demanded an ending appointment after asking nicely for well over a year. I told my gp I needed more levothyroxine and he dutifully put me on 125mg from 100mg. The first couple of days were awful, sweating, heart racing etc, so I cut the 25mg in half and took 112.5mg for a week and was fine. I then moved to 125mg every other day then finally up to 125mg and I'm now ok. Might be worth trying. I see you've had some really good advice on here and you've made the right move booking a gp appointment. Sometimes you have to take things into your own hands as gp's are not clued up on the Thyroid. I hope you get your answers, if you're not right go with your gut and treat dp advice as that, not gospel!
I had full thyroidectomy in 2019 and we're put on 125mg levothyroxine after about 6/7 days I felt way worse than when my thyroid was in my neck , i had throbbing which continued whilst taking the synthetic form of levothyroxine but my surgeon and gp just kept telling me I'd just had a thyroidectomy so i would still feel weird this continued even after a more than a year 🤷♀️.
My surgeon gave me the bag of levothyroxine on my discharge from hospital I had 2 different kinds of levothyroxine also one tablet was 100mg one was 25mg some phama companies only do certain amounts like 100mg tables or 25mg tables in different makes , workheart, accord and so on.
I unfortunately found my tables contained lactose and other nasty fillers which effected my colitis 😔 5 years of fighting my endocrinologists and gp 😡.
Many members say not to mix medication, to stay on the same form, but nearly everytime I went for my prescription I had 2 different types so more than not I eventually refused them until my gp rectified it.
That sounds horrible. I’ll mention lactose & different types this afternoon. It’s just strange how I felt fine for about 2/3 weeks then just rapidly went downhill x
It’s extremely common to feel fine for a few weeks then go downhill. There are some predictable dips we see once someone starts Levo, week 1 is usually fine, week 2 you start to feel it… week 5 is usually the worst, by weeks 5-6 and beyond it’s not uncommon for it to calm down. Also - this happens with most dose increases, not just when you start in the first place.
Everyone is different, but we see a lot experiencing exactly that.
lump in throat is normal. It’s scar tissue. My dear trustworthy surgeon and endocrinologist told me my neck and throat will feel different up to 12 months after thyroidectomy.
Try the stretching exercises hope they gv u. Look to tight, left, bend head sideways and back and forward gently..
Only other advice from my docs here, is you should not be mixing different brands of thyroxine.
Get a prescription for the full amount in one pill, one brand.
I am glad to be able to tell you that I too had the horrible lump in my throat feeling that alarmed me so much at the time but did wear off in time . I was told it was part of the healing process and just got on with it but it was upsetting and unsettling at that time . Good luck with your future health
Thank you. I had my scar checked and after 5 weeks I had no swelling so I was very alarmed by the fact I was struggling to swallow but it wasn’t near my scar. It was a totally different feeling.
Hi I had my tt on 12th June. I had felt like a lump in my throat for 8 weeks post op.It's all settled down now but I felt dreadful in those 8 weeks. Everyone heals differently. It really is a major op.
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