Hey everyone - I’m very nervous about having a total thyroidectomy in mid February.
I have seen so many horror stories. Do any of you have an experience that didn’t turn sour ? Some have said they have levithyroxine issues … I’m not sure if this is the right decision but my heart rhythm is being seriously impacted.
Welcome to forum.
Bear in mind you may be asking the wrong crowd.
The majority with thyroid problems do not have issues & therefore never joined a forum seeking help.
I have a family member who’s been on Levo for over 40 years. He became ill with hyper, had an operation almost straight away & managed well on what ever dose the doctor suggested & what ever brand the chemist happens to dispense. Very fit & active.
Recommend you have a complete thyroid function before operation & very importantly nutrients. Folate, ferritin, B12 & vitamin D? These can be effected around time of operation. & you need a pre & post operation comparison.
Don’t assume doctors will complete full screen before operation automatically, it’s not always the case.
Have antibodies been tested?
Thank you. Appreciate your contact. May I ask what prompted you to create / join this forum ? Was it due to personal first hand experience with thyroid disease ?
Appreciate your thoughts.
This forum was created long before I joined. I initially joined as I felt the treatment I was offered was not right for me. I was diagnosed hyper & offered RAI radioactive iodine at first appointment.
I wanted to learn more before going along with what doctors were informing me was the treatment I’d be having.
More info on profile (bio) click on names / picture for mine & other members history.
I just had a look at your bio - I see you had hyperthyroidism and type 2 diabetes diagnosed.
Did you have total thyroidectomy at all ?
Ps: had Folate, ferritin, D, magnesium, B12 and Potassium checked. I have the standard thyroid bloods done regularly including antibody testing.
Having another blood test end of next week for thyroid and antibody levels.
No, I remained on carbimazole .
Which antibodies were tested? TPO & TG antibodies signify autoimmune, TSI or TRab confirm Graves specifically.
What are your current vitamin results and ranges
You need good B12 levels especially before any anaesthetic
I have Graves’ disease. Is there something you’re specifically looking out for or leading into based on the results of these tests? It’s drifting away from my original question.
I know that amongst other things these have been tested numerous times along with TSH, T4, T3
Thyroid peroxidase antibody (TPA/TPO)
TSH-receptor-antibody (TRAb)
Thyroglobulin Antibodies (TgAb)
Won’t post all the results online but confirmed graves.
You’ve no history - we do see cases often of Graves being diagnosed without confirmation. We also see poorly managed hyper and members being guided to early irreversible treatments.
I’ll leave to others with firsthand experience of thyroidectomy as you request
Hello there,I had a total thyroidectomy June 2022 due to Graves disease.The operation itself went smoothly and I have no regrets.I did have a glitch earlier on last year when my TSH went over 10 but I have worked on my vitamins and minerals and had an increase in levothyroxine which seems to be solving the problem.If you want to read my story I have kept my profile up to date.I do have other health problems and they are also documented. If you click on the picture at the side of my name,there it is.If you have any questions I will answer honestly. It is perfectly normal to be worried,I was scared but in the end it's all turned out OK.
You say you have only read horror stories about thyroidectomy and before my thyroidectomy I could only find the success stories …. Sorry I can’t give you a success story.
Hello. I haven’t only read horror stories. Many mention side effects. Some are part positive and part negative and even less seem to be ecstatic and worry free.
Was your treatment was unsuccessful? I. Hope you are alright.
My removal was successful but I will never be alright just acceptable…. I would highly recommend getting a complete thyroid panel prior to surgery so you have something to compare after surgery.. assuming you're doing surgery.
Hello JiggyGillo :
Graves is an Auto Immune Disease for which there is no cure and just flipping the patient from hyper to hypo somewhat simplistic :
You might like to read around on Elaine Moore's website if you haven't already found her - elaine-moore.com
If you are unable to tolerate the Anti Thyroid drugs, either Carbimazole or Propylthiouracil (PTU) and or your specialist isn't able to support you with a level of wellness while we wait for your immune system response to calm down - a thyroidectomy is a much cleaner , more precise option than having RAI thyroid ablation.
pubmed.ncbi.nlm.nih.gov/338...
ncbi.nlm.nih.gov/pubmed/306...
I think the next most important consideration is the treatment you will be offered post surgery,
There are 3 main treatment options but currently, routinely, the NHS only prescribes the cheapest option - T4 monotherapy - and if this does not work well for you - you may find you need to go private or self source the relevant treatment options for yourself.
The thyroid is a major gland and responsible for full body synchronisation from your physical through to your mental, emotional, psychological and spiritual well being, your inner central heating system and your metabolism.
hiya, I don’t have any experience with TT. But I’m on a waiting list to have it done end of Narch. They called me with a date in February but I begged for a later date. Also terribly nervous. At my wits’ end :((
Total thyroidectomy and pregnancy questions
Total thyroidectomy few questions 
Total Thyroidectomy and Arthritis.
Selenium methionine and Total Thyroidectomy
