Life post surgery - full thyroid out + lots of lymph nodes removed

Hi honpon26, welcome to the forum. You are not alone in what you are going through. In my experience on this forum please remember the majority of people have had total thyroidectomy surgery alone, without the need for invasive neck dissections for lymph node removal. That is why they are generally back on their feet after a few weeks.

I too had bilateral neck dissection in 2023 and I felt like you, frustration and worry at how absolutely dreadful I felt for so long after, reading how others were taking their surgeries in their stride with hardly a missed beat! In hindsight I now know what a major surgery a neck dissection is and in an incredibly sensitive area. We suffer nerve bruising and damage and that takes time to heal. Remember everyone's cancer surgery is different and in different areas and we all recover differently too. Nerves can take a good while to recover sometimes up to 18 months. I found even my GP didn't really understand this surgery, only my surgeon/consultant kept me going by reassuring me how slow the recovery can be and that I was on track in his view.

The shoulder pain in the majority of cases will ease, make sure you get a really good physiotherapist that understands what surgery you've had for that. The nerves in the face, my smile was wonky for a few months but is fine now. I still have a slightly different sort of numbness in my chin area and my ears but it doesn't bother me. Oh and yes my scar goes from ear to ear but is honestly hardly noticeable now but to be honest that never bothered me. Add to this you need to get used to the synthetic thyroxine which can take some people a while to settle on. I didn't have radiotherapy so I can't advise on that. Do you mean RAI? My variant doesn't respond to RAI so hopefully someone else will pop on and help with that.

It affected my mental health afterwards when I didn't bounce back, so please try not to compare and let your body heal. I never really understood the expression be kind to yourself until I went through this and really is important you give yourself permission to just rest when you need to. You are young so you should heal well, ask any questions and try not to worry. X

Hi im new to the forum, I have MEN01 and had half of my thyroid and tumors removed 2012 then pituitary tumor 2015 had a complete Thyroidectomy in Oct 2024 and radioiodine treatment 13th Jan, I am still really struggling with aches and fatigue and im still not back at work, im not sure if this is normal

Hello and I’m sorry to hear about your story.  You have been going through so much and I know how you feel.  I too had a pituitary tumour (I was diagnosed with Acromegaly) removed and then my thyroid removed in two operations due  to papillary thyroid cancer with follicular variant.  I also had a parathyroid gland removed. I worry that I have the same gene as you despite it not being identified !

my surgeries were in 2023 and it is only now that my fatigue is really much better.  Have you had your calcium levels checked?  I think I have learned that it’s a waiting game and that it takes a long time to bounce back after such major surgeries.  I think you are totally normal to feel the way you do and my advice would bes to take your time.  I’m sure you are being closely monitored so this is comforting.  Maybe chat to your endocrinologist too, just to see if your thyroid meds are working optimally too.  My life changed fir the better when my parathyroid gland was removed and I now take calcium supplements.  
I so hope you feel better soo  and can take the time out of work too.  The good thing is that you are in a better place than you were before your surgeries and you should be very well looked after by your specialists.  I’m sending you all the very best and I hope you begin to feel better soon x

Hi there daisy, thankyou for your reply, it sounds like youve gone through a lot too, my MEN01 test was negative but as i had multiple tumors on two of the Endocrine areas it was diagnosed as clinical MEN01. 

Your surgeries werent that long ago and im glad your fatigue is much better.

Your right im definetly in a better place than i was before the surgeries.

However I seem to have constant low energy following my diagnosis and treatment that has only improved slightly and then has gone back down after recent thyroidectomy and neck dissection
which was 4 months ago.  I had spoken to my oncologist who said looking at current scan following Rai treatment, theres no reason why i should feel fatigued. Ive had calcium and loads of blood tests done and there normal, my Thyroid Tsh is 0.03 and ft4 22 which is outside normal but my oncologist upoed my levothyroxine due to cancer treatment.

I wonder why I struggle to do a few hours of housework, or look sfter my grandaughter  for few hours with out being done in! 

Thankyou for your support x

Hi Springflower, welcome to the forum. I too suffered chronic fatigue after my surgery in June 2023. It went on for over a year and like you, my ENT consultant/surgeon also said he couldn’t understand why I was still so fatigued. He referred me to the Endocrinologist team and after full blood tests that eliminated any other cause, eventually I was allowed a trial of combination therapy (T3 and T4) Levothyroxine and Liothyronine. (It’s important to get your fT3 monitored aswell if you are suffering ongoing unexplained fatigue. A small minority of us without thyroids just don’t do well on synthetic thyroxine monotherapy alone, as we don’t convert T4 to T3 very well, which is vital for energy). I have now been on that just over 3 months (20 months post surgery now) and at last the fatigue has steadily improved. I am able to work, walk the dog and do usual day to day things without feeling so floored. Don’t get me wrong I’m not running 10Ks anymore and have to “ration” my energy to tasks but I can get through the day and the fatigue has much improved, so I’ll take that. Hand in hand with that my mental health has improved too, no doubt down to being able to do more. I really hope you find an answer but I would perhaps discuss the above with your Endo if they are receptive to it or if not, push to see a different one?

Some Endos get obsessed about our “numbers” but interestingly all the historic studies done to give a baseline “normal range” were done on women with thyroids!! So normal for us without thyroids may not be within “normal range”. I’m just basing it on now on how I feel at my best and the lack of hypo/hyper symptoms. It’s a good idea to do a chart with dates/Levo amounts/blood test results and your symptoms. You can then take this to your Endo as it's hard to recall it all on the spot in an appointment.

I have no medical training but have just spent the time since my surgery desperately researching my condition, so this is just based on my experience. I also found Prof Antonio Bianco’s book Rethinking Hypothyroidism very relevant and highly readable, getting over many important scientific facts in an easy to digest way. Hope this is helpful. Best wishes. X

It sounds like you are being very well looked after which is always a relief.  Would you mind saying where you have been treated no worried if not of course if you prefer not to say.  I have three endocrine issues but they have never mentioned clinical Men 1 only genetic which I don’t have.  It’s certainly interesting so I’ll follow that up with my endocrinologist next time I’m checked.  I think I have had all my body parts scanned in the last year as the pituitary condition I had with excess growth hormone means that I’m  pre disposed to polyps.  As a result and purely by accident a large polyps was found on my gall bladder a few weeks ago  so I had that removed last week!!! Thankfully benign.  I think l all of this the monitoring is fantastic and catches things early before they develop.  I had no symptoms whatsoever!  
the fatigue is hard to deal with and I so hope this begins to lessen over time as your body continues to recovery.  It’s carried you through an awful lot too so my advice is listen to it carefully and rest when you need to.  Have you ever been checked for sleep apnoea by any chance.?  My pituitary tumour also caused it and we thought I had turned into an old loud snorer!   I was exhausted all the time but since my pituitary surgery it has totally gone away and so now I sleep very well and I’m so much more energetic.  
I think these rare issues are just not apparent until it happens to us so thank you for sharing your issues and I wish you all good things x

Thanks k9 

I will certainly look into speaking with endo about combination therapy with levothyroxine and lyrothyronine, and perhaps recording how im feeling on medication . Thanks for your advice

 Hi Sdaisy,

Im treated in University College Hospital , i self diagnosed my cushings disease which subsequently lead to pituitary tumor being found the first of my tumors. Its definitely really good that your able to be scanned and that your medical team are on top of things, especially as symptoms can be vague to begin with and put down to other things. Ive been checked for sleep apnea which thankfully i dont have.

lm glad your energy has improved and it gives me hope that mine can!

I think you are definitely in excellent hands at UCH.  I’m looked after at Imperial  now and they are looking after me superbly too.  I hope your tiredness resolves in time too.  I do take it easy a lot more these days and have finally accepted where I am today health wise.  Not sure if you have  Jaime across  the pituitary foundation as that’s been helpful to me.  I do go to their group support meetings in London and  I have found really useful too.  It’s comforting to meet others going through similar as there is that automatic understanding.  All the very best with your recovery x