Life after Surgery....

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Hi there, 

              I have sat on my experience for about three months now as I wanted to share the aftermath of my thyroidectomy. 

The surgery went better than they expected as they expected me to have a horse voice but when I woke up from surgery I just felt a bit hungover and I was really chatty. There were no complications. 

Since the surgery I have been put on 100mg of levothyroxine and 75mg. I found that on 100mg I felt hyper and a bit anxious yet on 75mg I felt underactive and low. So as they do not produce 10mg or 5mg, which would let me have a dose between 75-100 they told me to average it, therefore have 100mg one day, 75mg the next day etc etc. 

Since this medication change I still feel like a bit of a yo-yo of emotions but I do think it has gradually balanced out. In this time I have moved cities to University. 

Now I have not seen my endocrinologist, and I was sure I was 100% scheduled to see him in October, so I have started to panic a bit. In the UK, if you want to see your endo you need to go via your gp and even if you do ring the hospital where your endo works it doesn't mean you will get through to them. 

Anyway, getting to the point, since at university I have felt rather low, sleeping for hours yet not feeling awake regardless of how much sleep I have had and my biggest concern is that it doesn't matter the distance that I walk or weather the surface is steep or flat I am finding that I have this weird background out-of-breath feeling going on. 

Since this has gone on for two years now I just want to feel like I have energy, and not go around feeling like there's something wrong with my breathing. When I was overactive I had to stop every few meters as I was out of breath but this is different, its not affecting me getting places, its just annoying and my intuition says there is something wrong. Has anyone else experienced this?

In addition to this post I will be phoning my gp today to chase it up as I know I have put my head in the sand about it, I wanted to be fixed, even though I know the journey to recovery isn't finished yet. 

I don't want this condition to ruin my experience at University as I feel as though it is. I also don't want to feel isolated, depressed and sad for no reason. Please if you have experienced this can you reach out to me? Do you think the dose I'm on is too low? 

I hope everyone else's journey isn't so rocky. 

2 likes, 3 replies


3 Replies

  • Posted

    It’s definitely a rocky road.  The breathing problems scare me.  I’m also limited as to how far I can walk and then have to stop and regroup.  It’s hard for me to precisely identify all the problems.  Sometimes I think it’s coming from the stomach and sometimes I think it must be diaphragm instead of lungs.  Dr. says it’s the way the heart is distributing oxygen but heart workups show no heart problems.  Some people sail thru this with NO problems and then there is us.
  • Posted

    Hi Guys

    I can walk for miles on flat ground as soon as there is any up hill walking however slight I am breathless, on the same amount as you 100/75 and still trying to feel normal had mine removed 5 years ago.

  • Posted

    I had my thyroidectomy 2.5 years ago and am still trying to balance the levothyroxine.  I have been on all sorts of different doses during this time.  I did find that the 100mg alternate with 75mg was taking the me into hyper levels, but like you on 75mg is too low and 100 mg is too high.  I am on 75 at the moment because my levels went up to 24, I find that 22 is about right, but still cannot find a way of keeping at that level.  I've tried 4 days at 100mg and 3 days at 75, that took longer to take my levels up.  After my next blood test I will do 4 days at 75 and 3 at 100, I was told by one of the people on a discussion that 25mg+- could be the answer. I think that having to wait 12 weeks between blood tests is wrong, my Endo said that they could be done at 8 weeks, but NHS rules say 12 weeks and in our area the hospitals just refuse to do an earlier blood test.  I am feeling really tired at the moment, it obviously comes with the hypo, I would much rather be hyper, although I don't sleep I do keep going on adrenaline, I think.  I also have breathing problems, but have never associated this with the thyroid, I have allergic asthma and have always blamed the breathing on that.  I think I will do some research and see if there is a link.  I'm sorry this is affecting your Uni time. My only advice on this is that each morning even though you feel like death, just tell yourself that Today is a wonderful day and keep the mantra at the front of your mind, it may sound a bit naff, but it works for me most of the time.  If I come up with an answer I will let you know.

    Good luck


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