I have a goitre (4 yrs) and have been told by specialist that it is benign, but the course of action is to have it surgically removed.

[jormagund]

Specialist did not mention there might be side effects or life-long medication after surgery; nor explain that removing the goitre means removing the thyroid gland; nor discuss alternative treatments. Apparently my thyroid/ parathyroid? is functioning normally. I don't want surgery unless I absolutely have to. So my question is this: where do I best start my own investigation into exactly what is causing my goitre and how I could reduce it without surgery? Secondly, can I ask my GP or NHS specialist to investigate more/ give me a better diagnosis, before insisting on surgery?

[lisabax]

I'm sure you will get lots of other replies but I just wanted to share that I have a friend who,has had a goitre for forty years and has never had any symptoms or needed any treatment. I wasn't even aware that it was there until she mentioned it, then I did notice it. So if you don't have symptoms and it is benign, then I don't see why you would need surgery. But as I say I. Sure there will be others with more experience who will reply. LB

[jormagund in reply to lisabax]

Thankyou for taking the time to reply - all very helpful.

[alangardner]

my personal opinion is that surgery is the LAST and only the LAST option , if it , at the moment , not causing any major health issue and if its unlikely to in the future WHY SURGICALLY REMOVE IT .....if it aint broken don't mend it .....you really need to gain informed advice from both sides from those that have had the procedure [ good & bad ] as well as those that have rejected it .....and never ever forget that whilst you are compise mentise YOU HAVE THE FINAL SAY AS TO WHETHER THE PROCEDURE GOES AHEAD ......and if you refuse the doctors/specialists or hospital cannot railroad you into it .....alan xx

[jormagund in reply to alangardner]

Thankyou for your comments. Informed advice is key - I agree. So I begin my research as of now.

[alangardner in reply to jormagund]

always remember and never forget that .... information is power and to use the power constructively ..... information is worth more than a lottery win !!! alan xx

[Tatty10]

Hi i had my thyroid and parathyroids removed last august, my goiter was growing quickly and was squashing my windpipe, i was not told of any side effects only that i would need to take 1small pill a day and i would be fine,not true, i have many side effects and wish i could have had alternative treatment, it really should be a last resort, hope you find the right treatment.

[jormagund in reply to Tatty10]

Thank you for sharing this and replying to my question. It seems there are many sides to the argument that doctors simply do not volunteer! But if your goitre was squashing your windpipe - what else could you have done? Good luck with it all.

[cjrsquared]

Just a note of caution I had benign cysts (goitre) for 6 years but eventually they affected my swallowing and breathing although my thyroid function was fine. I had a total thyroidectomy on March 11th and at surgery it was found that one of the cysts was cancerous with spread to one lymph node. My surgeon was very surprised. I am now awaiting radioactive iodine treatment in several weeks time. My surgeons unhelpful comment was if that I hadn't delayed surgery ( like you if not broken dont fix it) I wouldn't need further treatment now. Make sure you get reliable imaging and get regular check ups. Good luck.

[jormagund in reply to cjrsquared]

Thank you - Yes caution on both sides and as much informed advice as possible - but just from reading a few posts on here it seems that there simply is no one solution - and surgeons always recommend surgery first don't they. Good luck with everything - and thanks again for replying.

[Hidden]

I have a goitre - I actually felt a stabbing pain and then a rush of fluid two years ago and went to surgery. Had a blood test, ultra sound and saw both an ENT and Endo. A multi nodular goiter diagnosed and as peroxidase was very high - 1000+ I self diagnosed with the help of people on this site with hashimotos. I have regular blood tests and all is within range. The Endo told me that surgery would be performed at my request if the goiter because cosmetically large - some do grow or if it interfered with my breathing.

I should start of by saying that I do not want to take thyroxine unless I have to. It can have nasty side affects and the thought of having to take medication for the rest of my life is not welcome. I have done all the research possible and many believe that a low dosage of thyroxine will support the thyroid - others do not.

I would advise to stay healthy, exercise, have B12 tests and do not worry about your goiter unless it becomes awful. I am very conscious of mine but other people do not notice it. Some people recommend following a gluten free diet but only 8% of hashimotos (goiter + high peroxidase) have coelic (sp) problems.

Hope this helps. I do feel fine and try not and take on board all the problems others have with the same condition! Take care....

[jormagund in reply to Hidden]

Holby, Thank you for your very pertinent advice. This community is extremely supportive and Im a bit amazed as I have never taken part in any on-line forum before!

I need to find out more about what is identified and tested in a blood test for thyroid function, what is the "normal range" and whether there are tests I should ask for which would be helpful to give a clearer picture. I also would like a doctor to spell out what the side-effects of thyroxine are and think it very annoying that my doctor didn't mention any. Either I suppose they don't have time to go into details - or withold them because they presume patients are not mature or intelligent enough to understand details. The stay healthy advice is definitely valid and this thyroid might finally make me take my own health a bit more seriously. Finally I don't know what a B12 test is, so will go and look that up. I have also just ordered a book called The Thyroid Solution by Ridha Arhem (I think) which was on a surgeon's recommended reading list, so will see what that says too - chosen for its positive title. Thanks again J.