Graves’ disease overactive thyroid , surgery soon

[Jlp1996]

hi looking for any stories from anyone who has been in a similar position🙏 I’ve been having trouble since about April heart palpitations and anxiety. My thyroid showed overactive but nothing else was done fast forward to September I felt like I was having a heart attack went a&e never got seen after 8 hours due to how busy it was. Following day got ecg and bloods at gp and confirmed overactive thyroid. I was referred to hospital but told a year wait list. Can’t take beta blockers because I’m asthmatic , after 3 days on carbizamole got taken off due to white blood cell count dropping. Spent 3 nights in hospital and now it’s been decided I will have surgery and not been left many options. Radioactive iodine was a no go as I have 8 and 3 year old boys. My surgery is 28th and I’m scared and want to hear peoples experiences. I’m 28 and before all this lead a healthy normal life but I can’t even go to work at the minute. Thanks x

Also I only found out about the graves this week x

It's a great way of sorting out an over active thyroid - I had mine done about 8 yers ago and walked to the hospital on a Friday and came home on Sunday evening.

The surgeon put me on thyroxine at 150mg and thats been that - life is good.

Im also asthmatic and they did put me on beta blockers for 2 weeks until I couldn't breath! then stayed on carbimazole for a long time till surgery

nobody notices my scar and the swelling went down rapidly and I was back swimming 3 weeks later and out on my bike 14 days after surgery

Oh and I had wonderful dreams whilst having surgery, which is quite long but ok

Hi - I too have Graves and had my thyroid removed end of August. It has been the best decision ever - I feel so much better for having had it taken out.

I'm so sorry to hear you can't take beta blockers. I remember how I felt whilst over active and it was the worst I've ever felt in my life, the beta blockers were the only thing that helped. Is there any alternatives they can give you to bring your heart rate down in the meantime?I recall a specialist telling me if you react to carbimazole they give you a shot of iodine to make your levels stable enough for surgery. I'm no doctor but I'd hope that alone will help you feel a bit better in the meantime.

Rest assured you WILL feel normal again. Its horrific but it will pass. And one day you'll look back and shudder but it will be over - and life will be good again.

Hand hold and let me know if you have any questions. Rest as much as you can I the meantime. Do you have any help with childcare?

Its a lot to take in and process, someone in your family will also have had this - do you know who? I didn't think anyone had had this but found out an old aunt had had a total thyroidectomy

@MikeRafone they wouldnt even give me beta blockers due to that reason! So glad your surgery went will. It’s definitely a scary thought , how long were you under ? And also were you in hospital long? My Nan had overactive thyroid and had part of her thyroid removed not sure if she has graves though I will need to ask

@Purple89 I’m on an alternative been told they aren’t as effective but they are helping a bit my heart rate still very high but I no longer feel like I’m dying which is a plus! I really do just want to get back to normal , family are all pulling together with the kids but it’s this time of year making things worse. Being off work sick pay is awful and Christmas is approaching and we also go to Disney in December so I feel it’s all a lot at the minute I’m in such a rush to get better and back to normal.

thankyou both for responding it’s such a tough and lonely time x

I went into hospital at 7am on the Friday morning - they one do one `tt per day where ham so I was first in as only op to go in. I was under from 3 and a half hours and they woke me in recovery. I was due to go home on the Saturday but they weren't happy with my calcium levels ( these are located near the thyroid and can get knocked) I went home Sunday
had 10 working days off work and went back to work 2 weeks later.

I think my T4 was around 69 and T3 was around 30 do the beta blockers did help considerably, but then I was very limited in what I could do - couldn't even stand to do washing up, was breathless just walking around the house when taken off beta blockers.

You have my empathy, those first few weeks were difficult. Pease don't worry about the surgery, it really is ok.

I remember my first question when I got a call from the specialist was- am I going to die? I felt exactly the same.

For my surgery, I went in on the Saturday morning and went home the following Sunday lunch time. I was under for about 3 and a half hours too, same as the PP. I had minimal pain afterwards. I had a full week off work and then did half hours from home the week after, then fully back to work.

It's a horrid time to be poorly OP. There is light at the end of the tunnel and the surgery is the beginning of you feeling like yourself again x

@MikeRafone that seems such a long time under I’ve only ever been under for wisdom teeth removed so was fairly quick and day surgery in and out. Did you feel better afterwards did your heart go back to normal ? My consultant won’t even try me on the beta blockers because of my asthma. My heart definitely feels better but I don’t feel ok to do much, even going for shopping isn’t a nice experience at the minute. I’ve been told about calcium levels dropping. How was your voice after? Did you need drains? Sorry for all the questions x

I had surgery last month. Surgery and recovery was fine. Surgery took around 3.5 hrs as my thyroid was bigger than they thought. I am still struggling with levothyroxine and the right dosage but I was felling perfectly fine until 2 weeks ago. You will still have graves disease even after surgery if antibodies are present.

@Suzi7979 did you need drains after surgery? How long were you in hospital ? What have you been feeling like since 2 weeks ago? Are the doctors doing anything to help ? Sending hugs x

No, I didn't need drain after surgery. I was in hospital for 1 night. I am not converting the levothyroxine and yes I have an appointment with endocrinology next week.

Its fine to be out for 3 ad a half hours and I felt ok afterwards. I had been on carbimizole for a few years so my heart rate was well under 90bmp and I felt a slight change 2 weeks later going from my thyroxine to fake thyroxine, but nothing worth noting.

I didn't have any drain and was sat up in bed afterwards and able to eat, my voice was fine and I was a little bit swollen. I could eat drink and was ok - I would have gone home on the Saturday morning if id had my way.

This is a photo of me still in hospital, the bruising had not come out at this point. Then a photo 2 days later, then dressed 4 days afterwards and you can see yellow bruising still. The 14 days later

No drains no real pain and 14 days afterwards the scar is decreasing rapidly and bruising gone.

The thyroxine works fine and I stick to 150ml as lower or higher dose affects me negativley.

I cut the thyroxine blister packs in half - that way I know there are 7 tablets and can check I have taken my daily tablet. I always start on a Wednesday.

Ill leave the photos up for a while and ask for mn to take down the ones with my face in later

My husband had graves and his thyroid removed 8 years ago. He is fabulous now.

He was so ill when they were diagnosing him. He has regular blood tests and sometimes adjusts his thyroxine a bit but it is perfectly manageable.

Graves is hereditary so we're keeping an eye on our children for symptoms. It's quite rare in the male line to be really aware of any daughters. although of course my chap was a special case!!

The Thyroid UK forum on www dot healthunlocked dot com will give you good advice. This all seems to be moving very quickly to surgery.

If carbimazole didn't work for you, have they tried the alternative drug, PTU?

Have you had TSI and TRAB antibodies tested and come back positive? If not, then you don't actually have Graves, and may be able to ride this out.

All the best

@Suzi7979 I really hope they get to the bottom of it for you and you can feel better x

@MikeRafone that was all very helpful and seeing how you healed. Thankyou so much for all the information you have given me it makes me feel a bit better going forward x

@KatyN i am so glad to hear your husband had a positive experience I was told it can be passed on to children , I have two boys and consultant said same as you have it is rare but if they are every poorly with no known cause to have it checked x

@JudyJulie ive been told in my case the only options left are surgery or radioactive iodine but with two small children I can’t be away from them for as long as I would need to be to take that. I don’t know what that means but I’ve been having blood work done since before and after I was admitted to hospital and I’ve been told I have Graves’ disease which has caused the overactive thyroid. At first they just told me I had an overactive thyroid at the gp but after I was admitted and more bloods I got told about graves disease x

Jlp1996

glad its helpful to you and you can hopefully be reassured going into this operation that the healing and scarring disappear rapidly

At the moment due to your elevated T4 and T3 you will be far more anxious a person than you'd normally be and that was what I found really hard to deal with when I was diagnosed. The operation will level out your hormones and not just your heart rate.

Do you have any idea when your operation is like to be?

I had Graves Disease and had a total thyroidectomy 20 years ago.

I was in hospital for two weeks, but it was a longer stay than it should have been, as my calcium levels were a bit buggered up. Felt a bit of a fraud after a few days, as I felt pretty good, but they wouldn't let me go until my levels were right.

I'm on Thyroxine daily (150mg) and everything has been ok ever since. Can't really see the scar, apart from in the summer when I get a tan on my neck.

The big silver lining is, I have free prescriptions as I'm medically exempt, due to taking Thyroxine.

Hi all,
@Jlp1996 I hope you’re doing ok
I'm so sorry to hijack this thread!
I had the op in July - all was fine with the actual surgery and my Graves symptoms have pretty much gone.

I did suffer a bereavement too the day after surgery

ive found it really hard to ‘mentally’ recover from Graves? Like I feel almost in some bad habits, expecting my heart to race etc but it doesn’t…… I hope that makes sense?!

how did you recover mentally?

@MikeRafone I’m hoping my scar heals good this sounds very superficial but I’m getting married in 2026 and my dress would really show my neck hoping my scar heals well. I am extremely anxious at the minute I have been for months it’s not as bad now as it was before diagnosis but it’s definitely still a factor. My surgery is booked for 28th so a week tomorrow x

@HelpMeGetThrough that is definitely a long time to be in hospital. I’m hoping my calcium levels are ok, I was in for 3 nights a few weeks ago and me and my boys struggled with me being away. They are both still very young. I’m glad things are much better for you now x

@TheJoyousExpert that sounds like an awful time you had so much to deal with all at once I can’t even imagine. I understand that I’ve not been in a very good place with it all, the more I see my constant he reassures me I will feel myself again so I’m really hoping that will be the case xx

@Jlp1996 thank you so much for replying 😊
honestly the surgery was actually fine. I’m not a huge fan of GAs but it was fine, I just felt pretty groggy for the next couple of days - for a few days after, my throat was quite sore but it was nothing I couldn’t deal with. Ibuprofen took care of it & soft food if poss.
I had to take calcium for a couple of weeks - I think that was more a precaution than anything. (All was ok with my parathyroids at the next blood test). I didn’t really have pain around the incision either…. Surgeon used glue which came off on its own. I was in for one night.

i think for me - and probably others - it’s getting the replacement hormone at the right dosage.

also I think my anxiety was just terrible with Graves, and it’s taking a while to settle. Also, I lost my mum quite unexpectedly the day after surgery. 😔

so what I’m trying to say is, the surgery will be fine, it’s nothing to be scared of. Lots of people feel better quite quickly froM what I understand.

try to rest as much as you can

best of luck to you for the surgery - keep us updated! Xx

I have Graves Disease too. Diagnosed almost 20 years ago.

After relapses I was given radioactive iodine treatment which completely destroyed my thyroid and stopped the repeated overactive thyroid issues. I now take 200mcg ot levothyroxine each day, and that seems to keep my levels about right.

My young children were 9, 6 and 3 when I had the RAI treatment, which was done as a day case at our local hospital. I wasn't away from them for more than a few hours.

We too had nobody else to look after the kids I mostly managed the not touching them up until about day 8 out of the recommended 10 days. DD1 was fine walking to school without hand holding and DDs 2 and 3 would walk well with me holding DD3 on reins and DD2 holding her hand. DH helped out where possible, and he took to sleeping downstairs on the sofabed for the recommended length of time.

So I don't quite see why radioactive iodine is not more of an option (I was told that it was the last resort, if RAI didn't work etc.), but you have to do what feels right for you I guess. I hope the surgery goes well. It's lovely when things start to settle down after the treatment and you begin to feel human again. 😃

I am 53 years old now, diagnosed with Graves aged 24. Took Carbimozole for a few years but relapsed repeatedly so eventually had radioactive iodine treatment. Levels fluctuated during my pregnancies, eventually settled on a daily dose of Levothyroxine after dc2’s birth and have been on that same dose since (am 53 now).

My grandmother had surgery for the same condition (in her day, radioactive iodine was not available as a treatment). She lived a normal life. My friend had a complete thyroidectomy in her 20’s, she’s living a normal life on Levothyroxine. You’ll be completely fine.

That should have read that I was told surgery was a last resort if RAI didn't work for any reason. Thankfully, it did.

@TheJoyousExpert of course and you for replying to me ! Did you find breathing a struggle after surgery or was it more just a bit of pain? I’ve seen some people get glue my surgeon has decided on dissolvable stitches. They have told me it’ll be 100 dosage for my height and weight and see how we go. That must have been awful for you going through all of that at the same time :( . Sending hugs. Thankyou so much xx

@Topseyt123 i don’t know if it’s because my son possibly has autism and is non verbal. He literally clings to me there wouldn’t be a way I could keep him away. My partner works full time so it would be me at home with the kids. My older son is 8 and would understand but my younger boy just wouldn’t and consultant told me they don’t offer it to people with small children. Thankyou I really can’t wait to feel better. I’m so glad it worked for you xx

@PosiePetal that’s all reassuring, I really hope everything goes back to normal afterwards. I was curious how it affected pregnancy. We have two boys and although we don’t have any immediate plans to have another it would be good to know if we wanted to we had the option and it was safe to do so xx

The anxiety will dissipate, but as you ave a high heart rate now and the thyroxine stays I your system for 8 weeks, you are likely to not notice your heart rate coming down for some time after surgery - it will not be instant. Though by at the latest 28/12 you should be feeling much more normal.

certainly your scar will not be visible by 2026 and if you are concenred in the interim, go and purchase a beautiful necklace to conceal the scar. Its not natural to be concerned about such things.

I think the radio active iodine is a far less invasive procedure and less expensive and thus is more often used.

Let us know how you get on 28th and best wishes.