unsure what to do about thyroid,but havent got much choice ?!!

hi everyone,i was diagnosed with coeliac disease over two years ago,to those who dont know it is a autoimmune disease which when you eat gluten your body reacts by attacking immune system, the treatment is to maintain a gluten free diet for life. a year or so after this i was experiencing tiredness,hot flushes and had blood checked and discovered i have overactive thyroid and suspected graves disease, great something else i thought ! what else is going to crop up. my thyroid settled down for a while and me and my partner conceived,i had regular checks throughout my pregnancy and when i was 8mths my thyroid levels had gone sky high again and had to go on propylthioracil which i was very cautious about,i had a healthy baby(thankfull)i then stayed on the meds for 1yr then my consultant said to come of them for 3mths to see if i relapsed. had my next app yesterday and unfortunately i have relapsed and have been advised to have my thyroid completely removed as the only other option is radioiodine treatment which isnt a option as you cant have any contact with babies for 4wks! after the treatment. i have read storys that after a thyroidectomy people can be very poorly for a while, dont know what to do, have to go on proplthioracil again for now but really am unsure and nervous of surgery and health post surgery, would be great to hear other peoples similar situations . thanks alot x

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  • Hi marsden

    I had half my Thyroid out due to a suspect nodule - not the same situation as you - but looking back I was experiencing some nasty hyper symptoms (tremor, anxiety etc.), now they're hypo as my half a thyroid is struggling, but still 'functioning'.....

    you say 'suspected' graves disease, have they not investigated this fully?

    did propylthioracil help? I see folks posting they have been on it or carbimizole for several years, Surgery (or RAI) should be considered the last options,

    you do have a choice - you have started to read up and find out your options first. I wish I knew more before I had my op as I was sent straight away (although op & recovery were fine).

    I hope Graves' patients can chip in and help you

    here's a recent post

    thyroiduk.healthunlocked.co...

    Best wishes Jane :D

  • hi jane, i am on a low dose of propylthiouracil and yes it did help symptoms but it isnt a long term solution as can damage the liver. yes i have heard that surgery should be a last option and when it is all taken out you can be poorly for a while which doesnt sound appealing especially as i have two children to look after. i am trying to find out as much as possible and weigh up the good and bad for surgery,but have read some scary storys,yours doesnt sound to bad. yes was told i probably had graves disease and that was it really, thanks for your reply, marsden x

  • This is a link which may give you some info and the first question gives details.

    web.archive.org/web/2010122...

  • Hi Marsden, After a sub-total thyroidectomy at 14 weeks pregnant due to Graves, I was fine for about 11 monthd being only on 25 mcg thyroxine. They then said I didn't need Thyroxine and a few weeks later, after a course of Septrin antibiotics I was very ill suddenly in the night. I lost my milk and had what I now know are hypo symptoms. I was not given any treatment for the following 16 years. Once on Thyroxine I recovered a lot after about 4 months. Since then have felt alright until 5 years ago, when once again antibiotics have made me suffer again. They only seem to do a total thyrodectomy these days and I don't think this is better. Hope you can come to a conclusion soon and that you recover well. Janet.

  • Hi Marsden, I had Graves in 2005 and was so up and down on carbimazole, I was advised to have a thyroidectomy. I had it early in 2006 and the op was no problem at all and the scar is barely visible. However, and it is a big however, I have never felt right since although it was such a relief not to be on a powerful drug, I was initially quite happy. Over the years my joint and muscle aches have got worse and I am now onT3 only. Have tried every other combination, so this had better work. Early days yet. You would automatically be put on levothyroxine after the op and you may be absolutely fine on it, especially for a few years. Maybe ask your consultant or GP what happens if you do not feel well on it and get an agreement from them that they will allow you to try other options. Ask them to write it in your notes! We are all much more informed than when I had mine done and there is no reason why you cannot tell them that you have heard of the probs with levo. They will deny it of course but stick to your request and don't let them take your thyroid out until you have got them to agree to your request. There are so many people on these sites whose GP's refuse to give anything other than levo. It is truly a scandal. Good luck with your decision and if you go for the op,make sure you have a highly skilled surgeon, who will take care of your parathyroid glands. They can be easily damaged but I am sure you have researched all that.

  • thanks for everyones comments be glad to hear any more

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