Thyroidetomy

[Claire-612]

Due to have the op in two week I suffer from graves for 4yrs had one episode of remission for 6mths however read so many horror stories about after I’m not so sure about going ahead, anyone know why I haven’t been offered block and replace first! My main concern is weight gain after.Im really worried about making the wrong decision. Thanks

[Nanaedake]

Which country are you in and who advised you to have a thyroidectomy? What reasons did they give you for the surgery? Have you got any blood test results you could post on here?

[Claire-612 in reply to Nanaedake]

I wasn’t given my last results Other than told they were almost within normal range I’ve been on 15 mg Carbimazole for the last 3 myths originally on 25 mg,I had an ultrasound on the gland which was perfectly normal but I’m still hyper,they offered radio isolines but the eye consultant said no because of the graves,he Endo say that surgery was the best thing and hasn’t mentioned anything else and I’m in the uk

[Claire-612 in reply to Claire-612]

My last result they told me were free t4 -15.0 free t3 - 5.1 and tsh 0.10, I’m going to be honest don’t fully understand it all

[Angel_of_the_North in reply to Claire-612]

Those results sound OK. I'd ask to stay on carbi for a bit longer.

[trelemorele in reply to Claire-612]

Those results are perfect.

I suspect they want to chop you up so they can discharge you ASAP after that.

But if they keep you on carbi they have to keep an eye on you.

Yes, the stories you read are true.

If you don't have cancer, think twice, three times, four times before you let them to chop you up.

[carroll998 in reply to Claire-612]

Hi Clare those results are good...please dont rush into having sugery especially when you havent got a multi nodular goitre. I had a total thyroidectomy because of a goitre leaning on my windpipe would have gone for less evasive procedure otherwise...I have struggled with no parathyroid since op and have regular blood tests ..not felt right since op please really think before letting them cut u open...kindest regards Carroll x

[Claire-612 in reply to carroll998]

I went back last week and decide not to have dinner be in the end said I can try another 18 months of treatment and I happy with that thanks for the advice x

[Nanaedake in reply to Claire-612]

Have you got thyroid eye disease along with Graves? It it were me, I would get a copy of all my results including all the antibodies that have been tested because I would want to be sure I had recieved the correct diagnosis first. Then I would want to discuss all the options. Why could you not stay on carbimazole for instance? Were you given a reason?

If you've got past results, why don't you post them here along with the laboratory ranges and tell people what dose of carbimazole you were on at the time and/or any other medication. If you've got the results when you were first diagnosed and before you were on any medication that would be helpful too.

[Claire-612 in reply to Nanaedake]

Yes I have thyroid eye diease I was told you couldn’t stay on Carbimazole long term I was first diagnosed aug 2013 I shall get my result print from the go and add them on here thank you

[Nanaedake in reply to Claire-612]

I believe that if you have thyroid eye disease that's conclusive for Graves disease. I don't know whether people stay on carbimazole long term with Graves disease but hopefully someone else on this forum will answer. If not then post another question to find out what other people have been told and how long they've stayed on carbimazole. Adding your results would be good as you may get more responses.

[Claire-612 in reply to Nanaedake]

Thanks for you help

[Nanaedake in reply to Claire-612]

you're welcome.

[Ohsofrustrated in reply to Nanaedake]

Two years is the length of time my end would prescribe it for me. There is a risk of liver failure after that. I was told I had to make a choice, surgery or radiation. I felt good on carbimazole.but my endo just wouldn't prescribe it anymore.

[Claire-612 in reply to Ohsofrustrated]

I’ve been on it for 4 yrs 😬

[twinkleyt]

Carbimazole is not taken long term but as a short term treatment. It slows the Thyroid down. I started on the highest dose and reduced over several months

I cannot remember how long I was taking it but was no longer than 18 months then stopped taking it and was told I was in remission but odds were it would return in 2 years.

.It was 4 years after diagnosis when I had the partial Thyroidectomy after 6 months of taking the Carbimazol again.

I was taken into hospital as I was seriously ill as had ignored the signs of it returning, before the op I had to drink iodine in milk 3x a day for 3 weeks to queiten the Thyroid down completely, the nurses told me.

The op was a success. I lost the weight I had gained on carbimazole and was soon back to normal weight.

The only horror after effect I experienced was an allergic reaction to the staples that were used to close the incision. I don't think they are used now.

[Harry17]

I can only comment on my personal experience but I had my thyroid removed (Graves Disease) three yrs ago (age 37) and have never felt better. They’ve monitored my levels closely, not had any probs with weight gain and I wish they’d removed it earlier. Try not to read horror stories. My operation was fairly straight forward (6 wks recovery afterwards). I had all of your concerns beforehand but fortunately they’ve not been a problem. Good luck.

[jaxie28 in reply to Harry17]

Hi I was so pleased to hear of your experience as I too will need a thyroidectomy due to medication not working for me. I am very prone to weight gain and wonder if you had gained any weight before the op or how long you were on medication before you had surgery?

Can I pick your brains a bit more please about your experience? What medication are you on post-op?

Thank you

[Harry17 in reply to jaxie28]

I was diagnosed with Graves aged 25, medicated with carbimazole for two yrs then it leveled out so they stopped the medication and had ten yrs or so euthyroid (though I never felt properly well during this period). Hyperthyroid symptoms came back (extremely high levels) aged 36 so they offered me radioactive iodine treatment but recommended total thyroidectony due to the severity of my symptoms. Since then I’ve been on 100mgs levithyroxine daily and my weight has been more stable since being on the meds than it was before. I can honestly say it has been easier to maintain my weight since the op than before. Hope that helps.

[jaxie28 in reply to Harry17]

Thank you so much that is great information x

[Claire-612]

Thanks that make me feel better nice to hear some positive feedback

[Teddy71]

I had my Thyroid removed last February, like you I was very worried my main concern also was weight gain as I had read many horror stories online, but I have not gained any weight at alll since the operation, I was back to normal and back to work after 2 weeks, also my dad & sister have had their thyroids removed and neither have gained weight in fact my sister has lost weight, hope everything goes well for you.

[Jstephens012 in reply to Teddy71]

Did it feel better after they removed it or worse?

[Teddy71 in reply to Jstephens012]

I was not ill before my operation I only had my thyroid removed due to bring enlarged and multi nodular, so to answer your question I do not feel any different which I think is good.

[Jstephens012 in reply to Teddy71]

I was asking because my thyroid enlarge I had a nodule in 2011. I had got a couple ultrasounds afterwards they said it's not one there anymore but my TSH low 0.07 standard value 0.30-3.80. It was normal last week, but my T3 T4 was so high. Since they took me off the meds my T3,T4 back normal. It TSH low. I'm just trying to figure out myself how to get my TSH up. My doctor dropped my 150mcg to 75mcg then she finally said stop taking them until I see her January 9..

[Claire-612 in reply to Teddy71]

Thanks so much

[Nutty9toes]

I had the operation in 1989 and was fine for the next 20 years taking 100mcg of Levo. But about 10 years ago all my symptoms returned and I have been knocking my head against a brick wall ever since to try and get something sorted. All my doctor keeps saying is that my Blood Test results are normal but how can they be. In the last five years I have put on about 5-6 stone and can't shift if, my daughters tell me I dont eat a great deal and I don't eat sweets and chocolate. I know someone else who had the op about 30 years ago and has no problems, so its your decision.

[Argie1]

I’ve had Graves’ disease for a year now and am having a thyroidectomy on 26 January. My levels just won’t stabilise and I’m on 60 mg Carbimazole. I’m trying not to read the horror stories and have spoken to a couple of people who said they feel so much better than before so I’m clinging onto that. I just feel it’s the right thing to do for me as I’ve felt so unwell with the Graves symptoms.

[ButterflyActive]

Hi,

I was diagnosed in 2010 and had a long and draining time with sorting out my thyroid. I had an endo at the time who gave me the wrong info. Told me I couldn't get the thyroid out. I couldn't get pregnant at the time and was 3 years married at this stage, obviously I knew then it was my Graves not being able to get pregnant. So I went on the block and replace theraphy and I had to not try for a baby while doing this, this is what I was told. I had to do it for 18mths. Unfortunately after four mths of the theraphy being complete, I had terrible migraines, that is how I knew when my levels were off, the theraphy didn't work. I was so upset. Put me back on carbimizole only for a while as he knew I wanted a child, he wanted me to have RAI also but waited until I became pregnant. 8 mths later I became pregnant, and I had a healthy baby boy who is four now. Eights mths after his birth I had RAI, worse decision ever! I became very sick was told would not have any side effects. In hospital for 5 days, worse time of my life. Anyway, changf endo and he said after what I went through I had exhausted treatment at that stage and the best thing to do, was to have my thyroid removed. I did in 2015, the op went very well. I had a great thyroid surgeon who left me with a great little scar you wouldn't even notice.

Took me longer to recover afterwards but that was due to the fact, fast forwarding three years, I finally found out last May I have Pernicious Anemia. When you have one autoimmune disease there is a high chance of getting another. PA is where you cant absorb B12 frm your foods. I am still fighting to get the right treatment, which is the norm when u have PA. I also would like another child but having PA and low b12 and not getting the right treatment can be very serious to the child. Anyway, if you do go ahead with the operation, make sure you get your b12 levels checked, mine were very low and the anesthetic obviously depleted it further and even further when I had my son, as gas and air depletes b12. I had terrible reflux which the doc then gave PPI which also depletes b12. Keep up with your vitamin and minerals, because they're important when having thyroid disease. I wish you the best of luck with what ever you decide to do. Apologises for the long post. X