Thyroid op

[Janet02]

Hi everyone, I'm new to this site but I was hoping to get some advice as to whether i should go ahead with thyroid surgery. A number of years ago I had the left lobe of my thyroid removed because of a goitre. Unfortunately I have now developed a multinodular goitre on my right side which has grown down behind my clavicle and is pressing on my windpipe (I have no symptoms as yet) I met with my consultant for the first time today, I asked if there were any other options available to me other than surgery. He told me that I've probably had the goitre for years and I could leave it alone but it will probably just get bigger ! He's put me on his list to have surgery within the next six weeks but I just don't know what to do, the thought of relyingon on medication for the rest of my life is frightening but so is the thought of my thyroid increasing in size and causing more serious problems in the future. Help !!

[bantam12]

Taking Levo is nothing to be frightened about, it just becomes habit and a way of life. Personally I would rather have the op now rather than wait for bigger problems to occur which may make surgery more difficult.

[Janet02 in reply to bantam12]

Thank you for your reply, I think you're probably right, it certainly isn't going to dissappear and if surgery is going to be inevitable at some stage it would make sense to get it over it now.

[Spareribs in reply to Janet02]

Just a thought, it has been reported that taking thyroid hormone can reduce a 'goiter' since the gland enlarges to make more hormone.

(I have no evidence link to hand- hoping others may chip in).

If you can get hold of your latest blood tests, members can offer help.

If you are due tests, make sure you ask for FT4 & FT3 as well as TSH - and thyroid antibodies if possible (TPO Ab & TG Ab) also minerals iron, ferritin, B12 & folate and Vit D - all are needed in the mix (and more). J

[Janet02 in reply to Spareribs]

I'm due to go for blood tests next week and knowing what to request is a great help. I'm interested to see further comments regarding thyriod hormone too.

[Hidden]

Same as me, goitre followed by multinodular goitre. You can rest assured that no surgeon would be willing to operate on a thyroid unless he thought there was no alternative. This type of surgery does entail risks, primarily to your vocal cords which may leave you no longer able to speak, or some difficulty doing so. Also risk to blood loss both during the op and afterwards if the stitches in neck burst.

The likelihood is that, following the surgery, you will be told that the surgeon was unable to remove every last trace of the thyroid and be offered the opportunity of RAI treatment to ensure it is completely dead and unable to once again threaten your health. You need to discuss the benefits of taking this treatment and not taking it with your medics. It is entirely your decision to make. I had the treatment and became thenceforth totally dependent upon thyroid medication, the only one on offer being levothyroxine/T4. It is entirely possible that I could have enjoyed some more years of "natural" life without RAI if those remnants had reactivated, but that is uncertain. For those of us without a thyroid, monotherapy on this synthetic chemical fails to restore us to any sort of decent health. Some may get by with the addition of some liothyronine, others will need to take NDT for life as I was forced to do.

You are fortunate that you still seem to be enjoying a decent life, but you need to be aware that this type of goitre, if left to its own devices, can become VERY invasive and the longer you leave it, the more complicated and dangerous will become the surgery to remove it. Residual internal scar(s) from earlier surgery also complicates surgery.

Recommend you read the following articles, freely available online, just google the words, to familiarise yourself with the standards which those treating you need to follow:

CONSENT: PATIENTS AND DOCTORS MAKING DECISIONS TOGETHER.

STANDARDS FOR PATIENT CONSENT PARTICULAR TO RADIOLOGY. 'PRUDENT DOCTOR'/'PRUDENT PATIENT.

[Janet02 in reply to Hidden]

It's reassuring to know I'm not on my own and they're people out there with similar health problems. You're right, I'm currently in reasonably good health and the thought of that deterioting after surgery is a huge concern. Until now my knowledge of thyriod issues has been weak to say the least and reading about your experience has been an education. I certainly feel more confident to have further discussion with my consultant, I take on board the consequences of delaying surgery.

[Spareribs in reply to Hidden]

Surely RAI treatment is only if cancer is suspected/found on biopsy?

Quite unlikely unless a single nodule really - like mine (luckily it was benign).

Perhaps if I knew then what I know now, I'd have listened to the doctor saying lots of folk have a lump in their thyroid, "it's not uncommon" instead of the surgeon "could be cancer" & I wouldn't have been scared into surgery (for the sake of a surgeon's prowess?) I'd have a clear mind to research it better...

of course if it's affecting your breathing that is something else and needs to be sorted...

cedars-sinai.edu/Patients/H...

[Janet02]

I have no symptoms at all, the goitre was only found when I had an x-ray following a chest infection. Having said that, my consultant showed me the CT scan and my windpipe is quite clearly pushed over to the side and shows some narrowing. I have also been warned that there is a very slight possibility that they might have to cut my chest if it isn't possible to remove the goitre through my neck.

I wonder if anyone has been in a similar situation and avoided surgery.

If surgery is inevitable, I was surprised to read in a previous post that the remaining remants of thyroid can remain active.

Should I find myself minus my thyroid and totally dependant on medication I would love to hear from people post op who have had positive outcomes. There seems to be so much negativity out there regarding thyroid replacement medication, weight gain, depression, lack of concentration ..the list goes on.

I'm sure my consultant is a very accomplished surgeon and has carried out this surgery many times but he was so matter of fact when I met with him, I felt as if I was making an unnecessary fuss by asking questions.

[Hidden in reply to Janet02]

M symptoms were most severe at the time of the successful TT in October 2005. They had been bad the previous May when I had been operated upon for the same problem, when the surgeon realised how bad it was and left the goitre alone, sending me home to spend months getting worse and worse.

I chose RAI as I was aware there was a possibility of the remaining tissues starting to work again and had no desire for my thyroid to have a 3rd attempt at killing me, which may very well have been successful. The 1st goitre in 1989 had done exactly what yours seems to have done which is to start to strangle you. I had about 6 bouts of chest infections and pneumonia in the year before that op and it took me several months to get back to work.

You are fortunate if you have no symptoms but that could very easily develop int multiple bouts of pneumonia due to incorrect breathing. You must balance the cons and pros in order to make a decision you are prepared to live with. Simply rest assured that when the goitre starts on a journey of exploration, there is no way to stop it except surgery and the longer you leave it the worse it will get.

I would judge the operations themselves as being something and nothing. It was the lack of the correct medicine that was by far and away the worst thing to happen. I only wish I could have been offered NDT immediately but I was left on levo for 8 years until I gave up all hope of getting any official help and did my own thing by getting some for myself.