Updates on Goitre Surgery…

[Void1234]

Just to provide further update on my Thyroid Surgery, I am currently waiting on a date for surgery and visited a private endo, who helped me push this forward and as I mentioned in previous post upp’d my Levothyroxine. He advised in letter sent to surgeon that my thyroid on left side is 10-12cm and that frightened me alot and has no adenopathy. Its predominately a U3 nodule. So its been growing for really 11 years or so…. I am trying to get my head around what all this means and not sure anyones had similar size of goitre and surgery ? Can share their story ….? but I’m abit frightened of whats ahead. He noted it is causing trachy deviation and compression so needs out asap. There is also the C concern, any advice or steer appreciated.

[PurpleNails Administrator]

Anxious time for you.    The vast majority of members who post back on here with updates about how surgery went say it was straightforward & the operation was less awful / painful than they feared it would be.

Have you had a chance to asks questions about the surgery & how you’ll be cared for after.  How much time you need to recover? I think the hospital stay is quite short - but expect to need to take it easy for at least a free weeks after.

  How much levo are you currently taking?  Were you retested after 8 weeks on new continuous dose?

 I really recommend you get full function with nutrients just prior to surgery.  (Likely easier to arrange privately) You need a benchmark to compare pre & post surgery levels, for function and nurtriets.

You haven’t previously posted nutrient levels & having optimal nutrients helps levo to be absorbed & convert well.  

Your swelling sounds quite severe, it must be to deviate trachea, so surgery is due to physical issue.  

I have a 5cm nodule but visibly the swelling is across entire side of neck.  It doesn’t impact breathing so surgery isn’t suggested.  

Your treatment & dose level may not change a great deal after surgery.  As the present thyroid likely isn’t functioning, but it’s still something which needs to be monitored & increased if necessary. 

[Void1234 in reply to PurpleNails]

hi there, i actually got bloods done to check vitamin levels 2 weeks ago , as you say so that i had a comparison, i am just trying to get them from the GP surgery! . From ultrasound i have one dominant nodule which is U3 , not sure if many people on here have had that ? Its on left side of my neck spreading to middle. I’m on 100 Mcg of levo and i’ve found a good endo whos watching my bloods and wants to see me straight after surgery to monitor my T3 and T4 not just my TSH. Ive had surgery before 5 hours to get a plate in my leg after breaking it in 4 places… so i am not sure how this will compare 🙈 Can i ask could i still be as low as 100Mcg with no thyroid? Does your nodule give any problems? its good its not interfering with things , long may that continue!

[PurpleNails Administrator in reply to Void1234]

100mcg might be too low. An average guesstimate for replacement Levo is 1.6mcg levo per 1KG of body weight. Very active often need more, more sedate need less. 

So if 76Kg would equate to 121.6 rounded up - would be 125mg.  Are surgeons planning to take out part or all of thyroid?   If you have some thyroid remaining it might continue to produce a fraction.  

My nodule over produces, I now take a medicine to stop it over producing. I was discouraged from discussing surgery but offered radioactive iodine. Have delayed agreeing to that.

[Void1234]

yes, when I appear to have swelling episodes with mine ( attached below pic) not pleasant… it blows up and then calms again, which is also a reason for removal, i was getting heart palpitations, shakes it felt like i was temporarily going over active then everything would slow again. A horrid feeling and thats why my diet I monitor etc, all the thyroid is coming out as there is a cancer concern and also that any remaining thyroid would inflame also. I’m very active usually so it will be interesting to see what they start me with. I went to three endo’s and two surgeons before made decision on surgery. Due to compression etc I’m abit upset its came to this as ive tried hard to keep thyroid but this is concerning . Its good you have been offered options and are well medicated.

My goitre

[Cavapoochonowner]

hello there, I had a total thyroidectomy in June this year for Graves disease.Not the same as you I know but if you would like to read my story you could click on the picture at the side of my name.I have kept it updated including my surgery and after.I would have it again no problem.Of course it is an operation and you need to give yourself plenty of time to recover.I think I am still improving and feeling better even now 4 months later.Best wishes to you.

[Void1234 in reply to Cavapoochonowner]

thanks so much for the response, its good to hear from people who had the surgery and it has worked for, will certainly read your story 👍

[Cavapoochonowner in reply to Void1234]

You're welcome.