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Thyroid cancer

A place for people affected by thyroid cancer to support one another, ask questions, and share their experiences.

Levothyroxine

Cclrose
Posted by

Is there anyone willing to share their experience of taking Levothyroxine in the first weeks after surgery?

i am currently 8 days post op, very emotional and struggling with fatigue. Not sure what’s normal, if this a combination of things and will pass or if it’s a sign of insufficient dose. 

Any replies gratefully received xx 

Minouche
Posted by

Hi there Cclrose

Ill try and help you with your question. Did you have a total thyroidectomy?

As it was only 8 days ago, I would imagine that the anaesthetic is still causing you some after effects. It does affect people differently and  feeling emotional and tired would probably come under those effects. It takes time to dissipate.

As for the levels of thyroxine, your own thyroid will have left you with enough to last you around 6 to 8 weeks ( if only a partial thyroidectomy, you may have enough reserves to be coping without taking Extra thyroxin meds), which is why a blood test is not relevant now. Your next blood test should be done at around 8 weeks. I’m assuming from your post that you have started taking thyroxin.

Were you told how to take this? It’s important to take this on an empty stomach sometime before you get up is a good time. Take it with room temperature water. Do not ear or drink coffee/tea for a minimum of 30 minutes after. An hour is probably better. If on other medication, this should be well spaced out. There are others who know a little more about which ones should be spaced further apart. Maybe they’ll comment on here.

I hope you’ll soon feel better, but please don’t hesitate to ask questions or reach out for help.

Wishing you a speedy recovery. Stay safe

Minouche

Living in Mexico

LittleGibbon
Posted by

I had half my thyroid removed in January 2020 and, as a hurthle cell carcinoma was found, had the other half removed last week (May 2020).

Both times I have felt quite "up" for the first couple of days (combination of the strong painkillers and relief that the op was over?), but then quite low. As others have said, I'm thinking this is just the effect of the anaesthetic rather than anything related to my condition. This is common for anyone who has had a general anaesthetic I believe. Fatigue and lethargy too, which I'm also experiencing. 

After the first op, the worst of the depression lifted after about 10 days and was better still once I went back to work and was in a routine again. (I have depression anyway so, for me, it's never going to go away completely.) I'm thinking it will probably be the same this time. 

I started taking levothyroxine about 2 months ago and have felt OK on it - I tend to be quite sensitive to medication but there have been no side effects that I have noticed. 

Do hope you start to feel better soon. Let us know if you can. 

Cclrose
Posted by

Thank you both for the replies. I had a total thyroidectomy and I have been taking the thyroxine first think in the morning about an hour before I eat or drink anything else. The feeling is starting to lift a bit now and I think a combination of waiting for the surgical histology, being in lockdown with quite minimal distractions etc has made everything look much worse than it is. 

thank you once again for the replies it’s really appreciated xx

Prettyflower
Posted by

Morning

I hope you don't mind me replying to you.  I had a total thyriodactomy January this year.  I am currently awaiting a new date for my radioiodine treatment as it was cancelled due to current situation.

I thought once my thyroid was removed and I was put on levothyroxine I would feel better.  Its been a bit of a roller coaster ride so far

. Like yourself I have felt so down and couldn't explain it. My hair falling out and nails breaking.  The tiredness and fatigue unexplainable.  I spoke with my consultant who told me I should be bouing around as I was sensitive to the levothyroxine. , ii def wasn't.  I felt as though I wasn't being heard. 

I was taking my levothyroxine in the morning as instructed but had no energy until about 4 or 5 in the day and couldn't sleep.  After a bit of research I decided to talk my levothyroxine at night at 10pm.  I eat nothing after 6pm to allow my stomach to be as empty as possible this means the levothyroxine absorbs into my body's cells during the night.  It has def helped me.  I still get fatigued but not as bad and usually later in the evening now.  I don't know if this would help you as everyone is an individual but it might be worth a try. 

Dont forget you have been through major surgery and you need to rest and be kind to yourself.  Also remember to do neck exercises everyday when your healed as it really important for your neck mobility. 

Please take care of yourself and stay safe xxx 

5 Daily Reminders 
1.  I am amazing.
2.  I can do anything.
3.  Positivity is a choice.
4.  I celebrate my individuality.
5.  I am prepared to succeed.
Love to everyone
Cclrose
Posted by

Thank you that’s really helpful, I will give that a try and see if things pick up.

i hope you get your iodine date soon, I feel like the waiting for things is having just as much impact for me personally as the diagnosis and medication 

Prettyflower
Posted by

Morning

I hope you are well today.  Its all trial and error and a lot of patience.   we have had a part of our endocrine removed and now have to take an artificial form of thyroxine.  It takes the body time to adjust.  The changes we face are frustrating at times to say the least.  Sometimes you just want someone to listen and understand that the way you can feel is out of our control and I hate when I'm told oh that's normal!!!  We face a new normal but each of us are unique and I feel that's we should be treated with the uniqueness we deserve.  

I agree with you about the waiting it make you feel anxious and alone but please know your not and feel free to say the things you need to here.  Nothing is silly.  Sometimes you just need to say things outloud and it then seems you have control over the cancer instead of the other way around.  

Please feel free to say what you need and I'm here to listen. 

Stay safe and know you have friends. 

Lots of love PF

5 Daily Reminders 
1.  I am amazing.
2.  I can do anything.
3.  Positivity is a choice.
4.  I celebrate my individuality.
5.  I am prepared to succeed.
Love to everyone
PhoenixRising
Posted by

hi

Sorry to hear you are struggling. I just wanted to add though..

I felt TERRIBLE emotionally until my dose was sorted. Initially it was way too low and I felt INCREDIBLY DEPRESSED until It was got to the right dose. Im afraid it does take a while to tweak it to the right level. But now that I am on the right level I feel great mentally.

I used to suffer anxiety and depression before I had my thyroid out but I think in retrospect that was because my thyroid was failing. so I actually feel so much better now for the first time in years now I have the right does of thyroxine.

So take heart. Im sure once you get everything to the right dose you will feel SOOO much better. It just takes time unfortunately. Hang on in there. Love and hugs xxx

Thyroid cancer warrior

Prettyflower
Posted by

Hi

That's really good to know.  I am trying to be positive and when I feel down tell myself it's can only get better.

Xxx PF 

5 Daily Reminders 
1.  I am amazing.
2.  I can do anything.
3.  Positivity is a choice.
4.  I celebrate my individuality.
5.  I am prepared to succeed.
Love to everyone
PhoenixRising
Posted by

No problem. I promise it does get better. its just a slow process and January is really not that long ago when you had your thyroid out. Even the consultants don't understand as they have never gonehrough it. As you gradually hone in on the right dose it will improve. Its like tuning a radio to the right frequency. `fine adjustments at the end for a clear signal.

What helped me was the knowledge that feeling down wasn't my true feelings. There was a time at the beginning when my dose was stupidly low that I felt absolutely suicidal, but I KNEW that wasn't how I really felt. it really wasnt me. Thankfully this enabled me to almost sit "outside " of the awful feelings and view them more of a symptom of the low dose so that really helped me get through it. its shit tho 

I dont think the consultants warn people enough that depression and emotional turmoil is a big part of the side effects of having your thyroid out and the subsequent drop in thyroxine. 

Just be gentle on yourself and give yourself time to heal and adjust. its such a big disruption to your mind but I promise it will improve 

Have a beautiful Sunday  xxx

Thyroid cancer warrior

Prettyflower
Posted by

Afternoon

I agree with you I wasn't given much information and whenever I called the clinic with symptoms I was told "oh that's normal".  makes me laugh though as I'm super normal   I actually started doing the same as yourself a few weeks ago by looking at the sad emotions and feeling down as a symptom of my system not running too well.  I've been telling my husband that I'mike a car with the wrong fuel in it .  

I've changed taking my levo to night time and don't eat after 6pm.  Its def helped with energy levels but I'm finding it hard to move any weight at all.  I am excerising and on a low iodine diet at the minute as I'm really hoping I get my radioiodine in June sometime as although the tumor was removed with the thyroid the cancer had spread to my lymph nodes in my neck and lungs.  They tell me not to worry it's slow growing but I still do.  

I take 100mg at the moment but due bloods again in a couple of weeks.  

I will get there eventually I'm sure. 

Thanks for all the help and understanding. 

Have a lovely Sunday also. 

Xxx PF

5 Daily Reminders 
1.  I am amazing.
2.  I can do anything.
3.  Positivity is a choice.
4.  I celebrate my individuality.
5.  I am prepared to succeed.
Love to everyone
PhoenixRising
Posted by

Love the analogy - like a car running on the wrong fuel. That is so true or not enough fuel

Once you get the dose right the weight will come off more easily too.Yiur dose is still probably on the low side. Im on 125mcg. Im really tiny so my dose is low. Most other people I speak to seem to be on more than me so you probably have a few increases to go yet to get to your perfect level. Thats good you have a blood test in a few weeks and will probably get more info and an increase. 

So sorry to hear they have put the RAI off. That must be very stressful. I know I just wanted to get it over with. but they are right in that is should be fine as slow growing but you cant help worrying and want it done!. hope you manage to get that sorted really soon.

Have a beautiful week

xx

Thyroid cancer warrior

Rachy40
Posted by

Hi. I had a TT 12 days ago. I’m 40 and weigh 133 pounds. I’ve been taking 100MCG of Levothyroxine. I also experienced fatigue and malaise on and off up to a week and a half post surgery. I think a lot has to do with the anesthesia too. I also deal with other autoimmune disorders that cause malaise, so that may also be playing a part for me. 100MCG seems around the right dose for me because I pretty much feel myself. You will know for sure when you have your TSH tested if you need a different dose. Supposedly, we are to be tested 6-8 weeks after surgery. If you are feeling increasingly worse though, you may want to consult your doctor again. 

PhoenixRising
Posted by

yes. The anaesthesia affects you for quite a lot longer than you think. your body has gone through a lot  and it all contributes to exhaustion.

Just a heads up re the levels. Thyroxine is very slow acting in your body. I find it takes approx 5 weeks for changes to dosage levels to show up as feeling a difference [which is why they wait for 6-8 weeks to test]

12 days after TT you are still running on your own natural hormones made by your thyroid. there comes a time when your body switches over to the synthetic hormone you have been taking. No one explained to  me about this and I didn't know what was happening. It was quite pronounced for me as they had my dose way too low at 75mcg so my dose obviously plummeted as my natural hormones ran out. You are on 100mcg so that is a much better dose and probably you won't notice much difference. Then you can do the fine adjustments to get the dose perfect.

Thyroid cancer warrior

Rachy40
Posted by

Phoenix, thanks for clearing that up! I wasn’t explained that part either. Although, I figured that’s why they have us wait 6-8 weeks, to let our hormones adjust. I sure hope I don’t plummet, because I’ll be working again.