help cant get my head around any of this but fe... - Thyroid UK

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help cant get my head around any of this but feel i need to be prepared for any problems after my TT due in a weeks time

sued007 profile image
13 Replies

have a large goitre behind sternum .due to have a tt in a weeks time. Have had no problems with thyroid results to date -told in normal range. However i have very low vit D and ferratin for some time-plus always tired and have joint and bone pain (especially ribs) and always got cramp . I have to have a tt as obstructing wind pipe and affecting already bad asthma and breathing. I am petrified of the op as may have to go in through my ribs also due to size of goitre. I however thought ,stupidly so it seems that this would be problem solved. It seems however from posts that this is just the start of problems in getting the drugs right. Can you suggest any reading for idiots! that will explain things like T3 T4 etc and how to cope and what to expect. My surgeon simply said you will be on a pill for your thyroid and possibly calcium and nothing more- i feel i need to be prepared as it sounds like i have a battle ahead. Also has anyone else had this op, is it really dreadful .im so scared. Any help would be appreciated as im a total novice in this area. Also anyone had their op at Bristol BRI surgeon mr ceri hughes- if so what were your experiences good or bad please

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debjs profile image
debjs

Just wanted to wish you good luck. although I had a TT nearly 3 years ago my goitre had not grown behind the sternum. I did not find this site until a year after my surgery so you are one step ahead by finding it already. There are some very knowledgeable people on here. I would say don't be fobbed off with being told your results are normal or in range and always ask for a copy. Keep a record of how you feel and correlate to blood results and dosage. Make sure all the vitamins and minerals etc people talk about on this site are ok. Being told they are in range is not enough as I have found out by experience. 'Stop the thyroid madness' is a useful book to read.

Sorry I can't be anymore helpful about the surgery, but am happy to answer any questions I can. Good luck again.

sued007 profile image
sued007 in reply todebjs

how did you feel after surgery and are you coping with the pills etc

debjs profile image
debjs in reply tosued007

I think the replies below answer this really. My surgery was more complicated than they expected and I have had a number of problems which are unusual but there was only really a bit of discomfort after the surgery which settled after a week or so. The scar is very small and quite difficult to see now. My wound was closed with clips which looked very ugly but were removed after 3 days. I also had some drains in for 2 days but these were just a bit uncomfortable. Hope all goes well for you.

Townplanner profile image
Townplanner

I had a TT 4 years ago due to large goitre compressing my windpipe. They said it was slightly behind sternum but I had scans which showed it could be removed in the normal way. Like you my blood tests were always 'normal'

The op was fine fine for me and I didn't have anything broken to get it out although the surgery took nearly 3 hours. I think you need to know exactly what they are planning to do as far as the surgery is concerned so that you can prepare yourself.

You need to think about the drugs that you will take afterwards. Do some reading and be aware that the pill a day that the surgeon refers to may not be enough! I went down hill after my op when taking T4 (Levothyroxine)?only and am now ok on a combination of T4 and T3. If I had my time again I would buy some T3 and have it in ready to take alongside the T4. I lost too much time feeling unwell after my TT. You are in a good place to not have to experience that. Good luck for the surgery.

sued007 profile image
sued007 in reply toTownplanner

thanks what is T3 and where would you buy it, what does it do and how does a lack of it make you feel

keb5332 profile image
keb5332

Hi I had TT about 8 weeks ago now for Multi nodular goitre. I was in surgery about 3 hours and fortunately all went well. I was in hospital for 2 days then started on levothyroxine and sent home. The first couple of weeks I was tired slept a lot and got tired very quickly. I then went back to work but on shortened hours which helped. I had my meds put up 3 weeks ago and have much more energy. Still have the odd bad day but getting less. I know people regret having the surgery but I don't. I'm much more comfortable nothing is putting pressure on my neck now. Good luck x

sued007 profile image
sued007 in reply tokeb5332

thanks that gives me hope- how was the pain after op and how is the scar .Do you feel better in yourself

keb5332 profile image
keb5332 in reply tosued007

The pain was fine actually, only had paracetamol for 24 hours then ok. Neck was very tender but improved daily. The scar is doing fantastic. Its about 5 cm long which is more than I was told it would be but its healed well. The surgeon used glue to close it and I had no dressings on it!! I was horrified to start with having to face it but actually once I had it was fine. My level pre op were 'normal' I am now feeling much better in myself, energy levels are returning and hoping to start exercising soon!! Don't give up hope it isn't all bad!!!

sued007 profile image
sued007 in reply tokeb5332

thanks

Mumtoboy profile image
Mumtoboy

Hiya. I had my tt because my goitre had displaced and compressed my trachea. I'm 10 months on now and feeling fine. I was lucky because I did not have to have any ribs or sternum touched. I hope you will be lucky too.

Anyway my breathing and swallowing are greatly improved which was the main reason for having the operation.

Make sure you know your thyroid levels pre op, so you know what to aim for afterwards. Also keep on at them to treat your vitamin d and ferritin, especially as you know it's already low.

I don't know of anything to read specific to thyroidectomy but this board is great!

Good luck and feel free to ask any questions.

sued007 profile image
sued007 in reply toMumtoboy

thank you how are you coping on pills and how has the scar healed did you have a lot of pain afterwards

Mumtoboy profile image
Mumtoboy in reply tosued007

I was on paracetamol and nurofen for 2 weeks afterwards but most of the pain was from a stiff neck and swollen lymph glands. The scar has healed to a line across my neck about 2 inches long. It doesn't bother me now at all but I guess it is noticeable close up.

I'm doing well on levothyroxine although I'm always aware that I may need t3 too at some stage. For me the operation was a good thing as I can now breathe and swallow well! It did take me two weeks to get almost recovered and then a further two weeks to get back to normal. It's an individual thing though- just don't hurry to do things until you feel well enough. X

sued007 profile image
sued007 in reply toMumtoboy

what is T3

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