Levothyroxine not working

Hi Mbow,

sorry to hear you've felt no improvement. Not sure this reply will help you much sorry but just wanted to say you're not alone in the Levothyroxine battle! I feel the same. Had my op 6 months ago and like you started on 100mg but then down to 75mg (my levels were very low). I also still feel exhausted and low and struggle to find any energy or enthusiasm. I've been told the same, any effects won't be felt for 8 weeks but here I am 8 weeks on and like you, feel no different either. It feels like a lifetime getting through those weeks doesn't it! I naiively thought I'd at least have more energy by now!

So here's some things I've been told which aren't great but may help you too.

It can actually take years to get the levels right! It's difficult to balance changing the levothyroxine amount with the TSH levels for each individual person.

My consultant tests T3 and T4 aswell.

There could be a lot of other factors to take into account too; post op fatigue/pain, vitamin levels, sleep, mental health etc.

My thyroid cancer doesn't respond to RAI so I can't help you with how that affects the blood tests or thyroxine levels but yes I'm supposed to have one every 8 weeks, so I'm not sure why you can't have one now at this 8 week mark.

Anyway, there are people a lot more experienced than me on this forum, so I'm sure they'll reply to you soon with much better info x

Thank you so much for your reply K9crazy! I feel sometimes like I’m going mad especially because the consultants so far have been really relaxed about the meds - the focus was all on the surgery and recovery at the surgical site but nobody has really asked how I’m actually feeling otherwise. And they’ve all shrugged off my questions about how long it’ll take for the medication to kick in properly. 

I’m really sorry to hear you are so lacking in energy too and also that your cancer isn’t responding to the RAI - i hope that you’re being well looked after in the plan moving forward for you? It’s so much to deal with some days and I feel like I’m barely functioning as a mum :( 

Sorry for the doom and gloom….maybe I’ll feel a bit better as time goes on. I did call the hospital and spoke to the loveliest nurse who has arranged for blood test forms to be sent to me so I can get test at my GP next week so that’s a positive step!

take care and thanks again for replying xx

Please don't apologise for just writing how you feel. If we can't do it on here then where can we? No one else truly gets it. 

Your comments ring so true with me. Because my scar looks amazing and my post op Calcitonin levels were good (which is of course brilliant news) my surgical team are very happy. I am forever thankful. But then I feel really ungrateful and guilty questioning how much pain I'm still in 6 months post op and that I just feel generally rubbish! What must they think?!

Anyway, as far as the meds go I'm guessing they've got so much experience of how difficult it is to get the thyroxin right, so they daren't give us a timeline as to when we'll start to feel better! I assumed surgery, Levo, then boom I'd bounce back better than ever before! Haha. Not. Oh well one day at a time is all we can do.

My thyroid cancer is unfortunately a rare one called Medullary which doesn't respond to RAI for some unfathomable reason, so it's been  tackled surgically and just monitoring going forward. But yes I do feel in safe hands now, thank you.

That's great you've got the blood test forms now, if they've come via the hospital they may well test for the T3 and T4 I was told about. Let us know if you get any answers from your results. I should get my thyroid test results back soon too.

It's a steep learning curve all this isn't it!

Take care x

I’m so sorry K9crazy - I thought I’d replied to your last message . 
just like you I thought I’d bounce back after the op and medication…definitely not quite so simple!! But I am feeling a bit better now they upped my dose again. Which is a relief! But still a way to go and my RAI starts in 10 days so I’m hoping it doesn’t set me back. I’m very nervous about them finding further spread that didn’t show up in the initial scans. Horrible waiting game isn’t it.

Sorry to hear you’re in pain and feeling rubbish so long after your op. I hope you gradually notice improvements as time goes on. Sending lots of positive healthy vibes! X