I have severe Graves for about 8 years with high antibodies and told will not be likely to achieve remission and am likely to go overactive very quickly. I have severe symptoms with bad effect on my heart, breathing etc. and have been taken into A&E by ambulance a number of times with relapses.
I have remained just on AT drugs (currently on block/replace 40mg/100mcgfor the foreseeable - probably 18 months from last June).
I do not want RAI due to the many issues with it and did not want any operation either but I don't feel that good on B&R (compared to just Carbimazole) but my consultant says this is best way to keep me stable when I go overactive so quickly and so badly. So seems like I am stuck on it.
But I have no life either. I rarely go out except with masks π· to hospital/GP appointments or to get food every couple of weeks (early morning to avoid crowds) because I had low/abnormal neutrophils this year and had to stop the Carbimazole for a while due to risks of Agranulocytosis. This is also more of a worry since covid (and my father died from it). If I do go into remission and stop medication I am totally on edge as well in that I might suddenly become ill again very quickly (hyper). So my life, and that of my partner, is totally ruled by this disease - we don't go out together anywhere - not for a meal or night out at all. We don't mix or have any friends now. We haven't been on a break or holiday for more than 6 years.π
It is getting me down and my partner is so depressed as her life is as bad as mine and says we must go away somewhere soon but this terrifies me π with the risk whilst I am with Graves, whether on medication or not, as I don't know how good hospitals are abroad. It probably would be just Spain/Canaries but not sure what treatment and access to it would be like and some islands/smaller resorts could be far from state hospitals (and then there is the language as we don't speak Spanish)
So I think I have to consider a thyroidectomy or I'll never have a life again and soon I won't have a partner but having read about it this scares me rigid π± as I have read about all the possible complications including possible bleeding into the neck (hematoma) causing asphyxiation/death as well as problems by damage to certain nerves causing swallowing/chewing/speech issues and also damage to parathyroids causing low calcium levels - all of which can be permanent. I already have swallowing issues as I was diagnosed with dismotility of food pipe when I was tested for swallowing issues a few years ago and would not want it to be any worse as it is hell at the moment. I would not be too bothered about temporary issues or a bit of change/hoarseness to the voice (as long as I still have one).
The endo nurse said I might be able to speak to another patient who has had the operation but obviously they want me to have it (as it gets me off their books and back on GP's) but they will just direct me towards someone where everything has gone just fine when I read much, including on here (such as just lately the post by Germany1924 who had had a thyroidectomy, where it hadn't gone well) - where either the operation hasn't gone well or the treatment afterwards when Levo is not working possibly due to conversion problems and then not able to get any other medications on NHS. In fact the latest guidelines seem to suggest it will be harder now than ever to get anything other then Levo on NHS.
So just wondered if anybody who has had experience of thyroidectomy with any issues or complications could give me any advice about it and how the operation/recovery was and aftercare and conversion issues and how the NHS has treated them. Unfortunately I have had many bad experiences with NHS with my health issues and so worried about the operation but if I do decide to I need to be on the list as Endo says waiting list can be around 2 years.
Many thanks. π
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LonelyPlace
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I think when you read others experience on forums you are presented with a skewed perspective.
The majority of those treated with RAI or thyroid or diagnosed with hypothyroidism without intervention first go on to have no complications & lead normal lives without seeking out the help of a forum.
Someone at the start of treatment being pushed into irreversible treatment, or someone comfortable, stable & well on long term treatment means further options may not be right for them.
Your situation is different, & fair to opt to next step after such a long time & being unwell.
Much of the issues you read are from poor management after treatment. You can be prepared for that and put things is place to advocate for the right treatment.
Hello there,I have Graves disease(diagnosed 2018) and have been on carbimazole only and also block and replace.I also have thyroid eye disease.I had a thyroidectomy by choice June 2022.I am having some issues getting my levels right(I am on levo only) but over all I feel better since I had my thyroid out.The operation was straightforward although I was nervous and recovery was good(I didn't rush anything).
I have kept my profile up to date,if you care to read it just press on the photo at the side of my name and there it is.
I feel more in control now than before,I really didn't feel great then.
If you have any specific questions I am happy to answer them regarding my experience.
I was getting migraines every week for 5 weeks and my levels seemed difficult to control,that is what decided it for me.All the best.
Yes I read your profile and seems you didn't have any major issues with the operation although it scares me witless after everything I read. π± I too read many horror stories and stuff that may go wrong. I also have throat problems with dismotility which means I have swallowing issues and read this operation can cause swallowing/chewing issues due to nerve damage which worries me greatly as I can't tolerate it any worse or I won't be able to eat anything at all ( I already have to eat mainly soft foods and with dry foods have to drink plenty with each mouthful and cut up and chew food up very well). Was your swallowing/chewing/breathing affected after the operation because if mine was I doubt I would be able to eat anything.
But you seem to have had some problems afterwards with your levels up and down a bit. Do you think these are conversion problems or just a case of trying to get your levels balanced?
Before I think you said you were trying to get a trial of T3 on NHS but I guess that was unsuccessful, as is often the case with NHS, as you are still on Levo only. That's one of the things I am majorly worried about as I cannot afford to fund my own private treatment - even regular blood tests are out except maybe once a year but I don't think that would be enough, I don't know if you can do this and considered it before you had the operation but that worries me as I would have no other real options if Levo didn't work out for me (I can't work now due to health and am not at pension age) so I would be stuck and left ill. I don't know what part of country you are in but I am in North of England and find NHS (hospital as well as GP) pretty lacking and poor service. π
I do hope you get sorted out as it is no good being left in limbo and I think it is wrong that patients have to fund their own treatment, even if they can afford it as most of us have paid our NI all our lives for a decent health service which we are currently not getting.
Hello there,I haven't had any swallowing /chewing/breathing problems since my operation.Sometimes my voice is a bit croaky.I also can't really sing,my voice sort of breaks up.I couldn't really sing before,but now it's awful.
I'm in Yorkshire and had a years wait from being referred to my actual operation but that was last year.
Regarding me and levothyroxine. I had been on block and replace,so I knew I was OK with it.I only started having issues about 7 months after my operation. I went to the doctor as I thought I had shingles, it turned out I hadn't but they did a blood test to check everything else and that's when they saw my TSH >10.I did my own bloods and saw my T3 below range.I think it had been OK until then, I never sensed there was an issue.
I may have been jumping the gun asking for a trial of T3,but in any case I wasn't refused,he just completely ignored my email.
I can see that you want to look into this thoroughly, you have to be happy with your decision.
Once I decided ,I just looked forward and hoped everything would be Ok.
I couldn't have had any quality of life with a migraine every week so it was the lesser of 2 evils for me.I am still positive that things will sort themselves out for me.
Ultimately you are doing the right thing ,asking lots of questions and researching as much as you can.It's a very individual decision and what's right for one person might be wrong for someone else. Wishing you all the best with whatever you choose.
Yes I agree that is most likely true - most people will not have problems although I have read of figures between 15 - 25% of people treated with RAI later go on to have problems - either complications of the treatment and worse quality of life and this can be some years later. I think this is too high a risk. There are also the increased risks of linked cancers which may not be for some 20 years or more but still there. I read from your profile that you refused RAI/treatment whilst stable on carbimazole and that is what I would choose as well if I was and like you wasn't at risk of relapse which are severe for me - at times feeling like I won't make the hospital. The only risk you have then is some side effects of Carbimazole such as the low neutrophils causing Agranulocytosis which is low risk (my endo said approx. 5 people per thousand per year will develop the life threatening condition) but it is a nuisance as whenever you have symptoms (was told any of high temp, flu like, sore throat, mouth sores, toothache) you are immediately having to get same day urgent blood tests done, which can be difficult and is very inconvenient and usually means A&E as difficult to get done urgently anywhere else.
My endo was saying I had no choice but to have RAI after my 2nd relapse so I changed endo and saw him for first time this year. He does seem better, although only get to see him for 20 - 30 minutes once a year, and said it's my choice what I want to do and won't push me to do anything. He said he and another consultant (the one who was pushing me to have RAI) had noticed that patients fared worse after having RAI than those staying on AT medication or having thyroidectomy. So why was the other consultant pushing me to have it towards the end of last year? It doesn't lead you to trust them which is a problem I now have with the NHS - I used to believe they always acted in the patients best interest but now I don't from experiences with my own treatment and that of my family. They don't even adequately answer my concerns/questions now. Even when I told a clinician in endocrinology that I learned more and got more support from websites such as this one/Elaine Moore etc. she said I wouldn't believe what you read on many of these and if any just to look at the British Thyroid Foundation one (which I think basically just seems to mainly follow the NHS line!)
I also agree a lot of it is down to poor management by NHS after treatment such as conversion problems with Levo and then the NHS refusing to fund anything else - I believe the guidelines are worse now than they used to be and told to only prescribe Levo for vast majority and even take other medications away from those currently taking them and put them back on Levo - (in all but most exceptional cases) but what can you do if it happens to you and, if like me you cannot work due to poor health (but not yet near pension age) and cannot fund medications yourself. I don't have Β£100/Β£200 or more a month to fund private treatments/tests/doctors. I also don't feel as well on Levo since June (block/replace) as I did just on Carbimazole before that so figure it's that (maybe wrongly but what else?) I feel tired all the time/fall asleep at drop of a hat even during day/have less energy/can do less than used to/muscles feel weaker. I wasn't like this before and don't really feel this is just getting bit older? Clinic says there is not a problem as my T4/T3 now back in range even though TSH has stayed low (was supressed before last bloods) so shows Levo is working. Whilst I agree with this I just don't feel the same/as well as I used to so think that it may be that this lab produced chemical hormone is probably not the same as having natural hormone. Other evidence I have was my mother had underactive thyroid and had to be on Levo from in her mid 40's and always said she felt tired from then. At home during day she was often sleeping/lethargic and it seemed to me it was down to that. Even though she ate a healthy diet (mainly vegetarian and didn't like sweet things much) and tried to do exercise she developed high blood pressure/high cholesterol and osteoporosis and was on medication for all - I don't know whether these are common side effects of Levo but have read things? and so is another reason why I have refused treatment up to now. Levo would be all I would have and no other options.
But on the other hand, as I said I just don't know how much longer I, or my partner, can go on like this. We have no life, my partner just works from home and is very depressed. Soon we will both need treatment for this but we won't really get any for years - I think mental health is probably just as bad or worse than thyroid treatment on NHS. We are both at our wits end. π’
Hi LonelyPlace, my sister in law was found to have thyroid cancer - she was left for a year because when she found the lump on her neck she was breastfeeding a new baby. Anyway she had a thyroidectomy etc. I realise she was probably a lot younger than you - early 20s but since then she had had a wonderful life.
She did a OU maths degree - she had started it before the thyroidectomy and carried on throughout her treatment, she taught maths for years, brought up two (at that time) young kids, went mountaineering, hill walking, mountain biking, they have a yacht and sailed round the med, canaries and she and her husband they have holidayed all over the world since then. She used to pop back home from wherever they were and stock up on thyroid meds then off they would go again. The baby is now fifty and my sister in law is still going strong. So if you even do half of what she has done then youβll be fine.
As Purplenails says you only hear of people with problems in groups like this, there are probably many more people around who have had thyroidectomy ex who are like my sister in law and are doing very well.
I had Graves in 2012, was treated with block and replace but I was fine on the treatment and have been in remission since. Have you tried going totally gluten free? I did that when I developed inflammatory arthritis in 2014 and I noticed my antibodies went right down to very low numbers so it could be worth giving that a try.
Your sister in law has done very well since her 20's and is a success story. Yes I'm in my 50's so a bit older but I would be just happy if I felt well and just had a mainly quiet life - but get to go out now and then instead of me and partner feeling like a caged animals and maybe just get to have a break/holiday once a year - that would do for me without mountaineering or sailing. Just a little bit of life would do. Now I can't work I know I have to forego any luxuries I once had dreams of when I was working - including that of a nice enjoyable comfortable retirement but I'm resigned to that now.
But just hard to cope with no life at all as now so even though scared to death and not sure can go through with surgery, I am having to consider it even though I'm unsure how it'll work out for me with some other health issues and also whether lifelong Levo will work out.
You have done well also staying in remission that long and if I did I would remain without any invasive treatments - I've had Graves about 8 years but have high antibodies and don't achieve remission for very long, consultant says unlikely to and will become highly overactive very quickly which is just my luck and a worry. So really stuck with what to do for the best. NHS don't really help - they just want me to have RAI/surgery although at least now my consultant is not trying to force me into it.
No I've not tried gluten free and don't know much about it. In past I always thought gluten free was a really restrictive diet and GF products very expensive but I don't really know nowadays but definitely worth looking into if it helps - no harm giving it a try.
I had my thyroid removed back in 2015 without a problem.
To do with all surgery and especially the thyroid the most important thing is to check the
experience of the surgeon first. Choose an older surgeon with plenty of recent surgeries.
Don't be rushed into having an inexperienced surgeon. I have an ear tumour now and for the past few months have been studying the best two surgeons in the UK.
I'm glad you didn't have issues with the surgery. From your profile you seem to have had have some issues with medication since but you must feel this is better than how you were before. I can't work now due to health (and not at pension age) so I wouldn't be able to fund private medications/tests etc.
Will the NHS willingly give you all the information you ask on surgeons etc. as I have found them most unhelpful/rushing me off and not wanting to answer my concerns/questions. I live in North of England - might be better elsewhere not sure. I read somewhere online that you should have a surgeon who has carried out at least 25 thyroidectomies in the past year due to risk of more complications if lower.
I didn't know you could choose any surgeons in the UK - thought you had to go with one from your NHS Trust area and how do you find out about these and their "rankings" as such? Is there any information compiled on them and how do you get hold of it? I've never been told any of this by NHS.
I am actually living in France and that's where I had my operation too. It was only the year before my op that I had problems with my thyroid so very different from most people. I had been on Thyroid s for many years but after Covid I received a new batch that didn't work and I became ill.. I am now fine again. Where do you live perhaps I could find out the surgeons in your area I have a consultant in the family who works for the NHS.
It's better to have your thyroid removed than leaving it, my Aunt was Hyperthyroid back in 1930's and never had help at all.
Good Luck with help you will become well again, Tc.
I had my thyroid removed in 2021 due to cancer (only discovered due to a CT scan when quite seriously ill in hospital with COVID).
Other than my parathyroid glands going into shock for a day or so immediately after the surgery (calcium tablets dealt with that) and a sore throat for a few days, Iβve had no problems.
I also had radio iodine treatment afterwards, which was also absolutely fine.
I live my life exactly as before, energy levels etc donβt seem to be any different.
I'm glad it's gone well for you now although you've undoubtedly been through a very rough time. Incidentally my dad died of Covid in 2020 after he caught it whilst in hospital - was awful.
I assume you've not had any issues with just taking Levo either so have done well with same energy levels etc. I am on block & replace now and can't say I'm as well as I was before just on Carbimazole so assume it's maybe the Levo causing me to be tired/lack energy/weak muscles etc. but don't know really. That's why I'm still unsure about rushing for surgery as if I'm not so good on Levo I don't have other options as I can't work now (and not pension age) and so can't pay privately for other medications etc.
I just wish I could have it as I have no life with Graves and that everything would work out fine as it has for you but there are no guarantees and with my existing conditions whilst not life threatening they do limit my life and daily activities already. Rock and a hard place comes to mind for me.
I hope you continue to do well - nothing really matters as much as your health. All the best to you π
Hi. I had severe Graves where my blood results were so high they were literally off the scale. Carbimazole improved things, but wasn't curative as I was still hyperthyroid on 60 mgs so I had RAI in 2010 and, once I was stable on levothyroxine, I haven't had any issues. The Graves caused all sorts of issues for me as it affected all of my body systems and it took three years for me to be stable, but once I was I never looked back. I can't talk for anyone else, just my experience, but I'm glad I had that treatment option.
60mg is high dose as 40mg is considered a total block I believe normally. When I started on 40mg this year it caused my neutrophils to be low and I had to stop it for a while as was at 1. something (only found out by chance when had a blood test) and could have led to Agranulocytosis - so being on 60mg you haven't suffered from this as I believe a higher dose can be more likely to cause it.
Graves is not good for me either - high antibodies was at 7.9 so can't really get remission now and very severe effects on heart. RAI just terrifies me by what I have read about people having lots of complications/risks afterwards and diminished quality of life but you definitely seem to have been a success story and right for you although I read your profile and you seem to have had some issues since in getting your levels right and as you mention with your weight, eyes, joints, cholesterol and a TIA but undoubtedly you are much better than you were before with Graves, I can understand that. However you can only know this in retrospect - some people could be worse off so it is a gamble really and invasive options should maybe be only considered if, like me, your life is truly unbearable.
Many thanks for your advice. I hope you continue to do well. All the best. π
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