Life after Thyroid Surgery...with Graves Disease

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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. 

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  • Posted

    Though I have not had your experience, I have talked to many patients who have and they expressed the same feelings you do.  Most thyroid replacement drugs prescribed by docs for people who have lost their thyroid are synthetic (i.e. levothyroxine).  Though synthetic thyroid hormones are the most popular thyroid hormone replacement options, animal thyroid medications are also available. Animal thyroid medications are made from dried out pig thyroid glands. Some patients prefer these natural alternatives to their synthetic counterparts because they assume these drugs are the safest treatment. However, many doctors believe that synthetic thyroid hormones are the best—and safest—option. This is because the blood levels of the hormone are more predictable with the synthetic forms than the animal source pills.  Also some patients can also do well by adding Cytomel (T3) (by prescription) to their treatment regimen.  I once had to be on a low dose of Cytomel and when one of my docs added T4, I really noticed the difference in how I felt and it wasn't good.  I felt better on Cytomel alone (of course I still had all of my thyroid at the time and I had not yet had Graves disease or hyperthyroidism).

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  • Posted

    Hi kat0, it sometimes takes some time to get the thyroxine dose just right. To adjust your daily dose you could also use a pill cutter to split the levothyroxine tablets if needed. 

    Another point is that some patients have problems efficiently converting T4 to T3. That is why some patients do better when they are also taking some form of T3 (as linda187 mentioned above).

    A normal thyroid produces approx. 20% L-Triiodothyronine (T3) and 80% L-Thyroxine (T4).  That is why you might want to have your FT4 and FT3 levels checked in addition to TSH. At least during the initial phase when your L-Thyroxine dose is still being adjusted. Good luck and hope you regain your normal energy level soon. 

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  • Posted

    Hi I was diagnosed in 2006 with Graves’ disease after a three month rapid onset of symptoms . Treatment with carbimazole periodically followed until RAI in 2012. I subsequently fell hypothyroid 6 months after and have swung between 75mg to 100 mg doses. When I’m on 100mg I start feeling really awful( hyper ) so it’s normally quite short lived. So last few years I try to stay well, eat healthy, exercise, stress management, fresh air etc. Just have to deal with thyroid blips that give hypo symptoms and make life quite hard to manage and daily routines etc. I appreciate your struggles with uni. In my hyper days I had all your breathing troubles and sometimes with hypo  activity too but not as debilitating. In the last 2 months I have rapidly gone downhill. Mostly with breathlessness ( coming from racing pulse ) , it’s been scary and kept me from my employment. Jitters, rushes of energy to aching muscle fatigue and generally feel not myself at all . So tired but can’t rest properly to name a few symptoms . They have reluctantly reduced my thyroxine to 50mg as surprisingly my tests are all coming bk as fine. I am being sent for an echocardiogram in two months . Had a chest x Ray, peak flow test all fine. I’m Breathless upon waking , daily routine even at rest and get worn out on exhertion, talking lots etc. I just want to feel normal . Because of my test results it’s simply being ignored as thyroid related . I join the long que of trying to get to see an Endo . Why is this so hard in the Uk . This is hard to except , I appreciate the further tests on my heart and the doctors experience but when I say that my symptoms are a carbon copy of my onset of Graves’ disease 10 years ago and they are dismissed my instincts are pulling me to get what could be a simple answer to gaining control of my health again . I just want to go back to my daily routine and responsibilities breathing normally . In worried lowering thyroxine dose as if it’s supposedly normal I need to see an Endo . I know it can mimic hypo and hyper symptoms, there are fine lines , i may need longer on lower dose of thyroxine to see effects but this has been going on for too long and I feel like I’m in some court having to justify how I’m feeling to the docs simple to return to my normal life , responsibilities, things I was doing to keep fit and well . Best wishes in your recovery and uni I’ll keep you posted if find anything help info with breathing 
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    • Posted

      I have heard after

      Rai you can go hyper again because thyroid might still function...many biggest question in all this is...Is graves over after after thyroid removed..our can it still effect other body systems?

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