Graves - choice of Radioactive iodine or operation. But VERY little information. Any experience of others please on either option?

[KimKarenCat]

Ive Been given choice of Radioactive iodine or operation. But VERY little other information. Relying on Google. They don't even know which one has the shortest waiting list or approximately how long I'll be waiting as in months or years. Established iodine treatment doesn't always work first time, assuming it doesn't How long before 2nd try? Or is it back to the start if the waitingvlist? And that's back to HOW LONG IS THAT! Any advice greatfully received.

[TiggerMe Ambassador]

Welcome aboard

Very sensible to do as much research as you can, either option is going to leave you hypothyroid and in the position of needing to replace and balance your hormones which also isn't the easiest route as if you need combined treatment consisting of T4 and T3 it can be a fight... which part of the country are you in?

We do hear of many who regret either of these treatments as hypo's are so badly treated and wish they had given the suppression drugs more of a chance 🫤

What are your current thyroid levels?

[KimKarenCat in reply to TiggerMe]

To be honest I don't take it in when they say the levels. I just ask if it's gone up or down. Been on 40mg at most on 10mg now (Carbonizol ). I'm in Leicestershire.

[TiggerMe Ambassador in reply to KimKarenCat]

It's in your interest to become an expert in interpreting your results or they'll just keep bouncing you up and down as they tend to alter doses by too much

Results should be on your records? Have you got the NHS App? If not they are obliged to give you a printed version

Leicestershire isn't prolific in prescribing Liothyronine 🫤which is something else to consider

[Pandora777 in reply to KimKarenCat]

I actually know a lady in Leicester who is using carbimazole her endocrinologist is trying to get her to have RAI. She has one large nodule and is stable at the moment. You can be on carbimazole for years as long as you have regular blood tests. I have told her this and that is her decision after researching it on various support sites.

[helvella Administrator]

What a rubbish approach by them! Though we have heard such things all too often.

It reads as if you are being pushed into making the decision quickly - as well as with insufficient information.

I can see from your profile that you have Graves. But if you explain a bit more, you might get more and better replies.

How long since diagnosis?

What are you being treated with at the moment?

[KimKarenCat in reply to helvella]

Started 2023 but not sure when as was dieting so weight falling off no surprise. Dr did tests eventually started me on Carbonazol. October 23, didn't see specialist till about June 24 who told me I have Graves. Got abit of TED and horrible Derma lumps on legs, bad bowels exhausted most if the time.

[pennyannie in reply to KimKarenCat]

Hello KimKarenCat and welcome to the forum :

If you have - to quote your own words - ' a bit of TED ' -

RAI should not even be offered as an option as RAI is known to exacerbate eye issue with you experiencing further pain , discomfort and facial distortion, the psychological aspects of which are not considered.

RAI thyroid ablation is a toxic substance known to be taken up, to a lesser extent, by other glands and organs in the body and with an increased risk of cancer to small bowel and breast.

I detail below the most recent research - so you now have some information you might like to share with your medical team ;

pubmed.ncbi.nlm.nih.gov/338...

ncbi.nlm.nih.gov/pubmed/306...

The most rounded of all that I researched is that of Elaine Moore - books and website - elaine-moore.com

I'm with Graves and post RAI thyroid ablation 2005 and now with Graves - as it is an Auto Immune disease for which there is no cure - and now with Graves + TED - and without a functioning thyroid and self medicate as the NHS do not offer all the thyroid hormone replacement treatment options - as they once did - which leaves many forced into private blood test on order to test the vital T3 and T4 thyroid hormones and paying for medication in order to have some QOL:

Have you been referred to a specialist ophthalmologist to monitor your eyes ?

Please do your research - back in 2004 I too was given a leaflet from the BTF - and back then I knew no different - I think the BTF leaflets are somewhat economical with the truth though believe the RAI treatment is now in tablet form rather than as a drink but believe it is only now that the longer term consequences are being acknowledged with some researchers doing the necessary verifying of the ramifacations years on.

[KimKarenCat in reply to pennyannie]

Thank you for this. I certainly don't want to make my eyes any worse. Itching, leaking and it's constant annoyance (to put it mildly)

[pennyannie in reply to KimKarenCat]

Whatever drops, sprays, lotions or potions you have purchased OTC to ease your eye discomfort please make sure All are Preservative Free - even those prescribed :

[Pandora777 in reply to pennyannie]

I joined a new Graves’ support group on facebook and they were talking about Batoclimab. Have you heard of it?

neurologyopen.bmj.com/conte...

[pennyannie in reply to Pandora777]

No - it seems more associated with Myasthenia Gravis though this can be confused with Graves - but imagine whichever antibody as found as a positive the deciding factor -

and feel out of my depth taking this any further :

[Pandora777 in reply to pennyannie]

That is what I thought. I have been reading about it and it is very complicated

[Heart54 in reply to helvella]

I was treated with radiation pill 20 years ago for graves and the treatment was successful . I was developing heart problems so I didnt really think about any other option . It was a success and I have been on the same dose of thyroxine for many years . I’m 56 now healthy..not overweight.. my heart is great and no other related health problems . I’ve had no problem . It’s a stressful time .. I was working as well as being at uni with two small children but it sorted me out . It sounds scarier than it it .

[KimKarenCat in reply to Heart54]

Thank you for that. It gives me hope.

[Heart54 in reply to KimKarenCat]

I hope you get sorted soon x

[bantam12 in reply to KimKarenCat]

I also had radio active iodine treatment around 25 years ago and it was a great success, I wish I had done it earlier. I’ve had Graves since 12 years old and that’s over 50 years ago ! Over that time my heart function was affected by all the meds and relapses, so my advice to anyone would be get rid asap either with surgery or RAI.

[Pandora777 in reply to bantam12]

You have had Graves’ for a very long time so I understand why you had no choice. I have had a couple of remissions that have lasted years and I felt well then. I am 65 now and I am still fighting on. My heart is ok and I have no intention of getting rid of my thyroid it is a personal choice!

[Heart54 in reply to Heart54]

I’m actually on this web page for my husband and his heart x

[Pandora777 in reply to Heart54]

I am pleased you had a good outcome others unfortunately have not

[helvella Administrator]

Now I can see you are on Carbimazole, I'll post a link to a blog I've written which tries to explain some of the difficulties in managing that medicine.

helvella - Splitting Carbimazole Doses

A short discussion about Carbimazole primarily focussed on splitting doses but containing some other information.

Last updated 14/09/2024

helvella.blogspot.com/p/hel...

[PurpleNails Administrator]

I was told id be treated with RAI after my first specialist appointment. I have a hyper nodule which isn’t expected to resolve.

Has your Graves been confirmed with positive TSI or Trab antibodies?

Are you levels well managed? Are you monitored consistently, how often? Is your dose adjusted appropriately by FT4 & FT3? Because we often hear of treatment being quite poor & unwell patients told definitive treatment is therefore the only option.

Many manage on long term carbimazole as remission for graves can occur years into treatment.

When I tried to ask questions about other treatment options, or about RAI, I was passed a leaflet about it & told everything I needed was in there. It wasn’t. & while it’s factual it emphasises the best more expected outcome and glosses over the potential complications.

[KimKarenCat in reply to PurpleNails]

Yes was confirmed. I do blood tests at gp then chase for results which I get between 2-3 weeks later and new dose proposed.

[PurpleNails Administrator in reply to KimKarenCat]

If you obtain a copy of results you would be able to track your results & ensure your carbimazole is right for you.

You may be on too high a dose which is why you tend to skip doses, but really to get the best out of treatment the right daily dose & small adjustment will help control symptoms.

[KimKarenCat in reply to PurpleNails]

Thank you. I'll see if I can get a copy of my results to look at it.

[Pandora777]

Do you have any alternative but to do this?

I have Graves’ and no way would I have my thyroid killed or removed. I know so many women who have struggled to regain their health afterwards. If you have no choice I would have it removed. RAI can give you long term problems in my opinion

Have a look Elaine Moore’s site she had RAI and now is fighting stomach cancer. She blames RAI. I am not trying to scare you because it might be fine but do you want to take the risk it might happen?   pennyannie has had RAI ask her about it

Just to add I was told to have my thyroid zapped with RAI 15 years ago I refused and here I am 15 years later still with my thyroid I have obtained remission a couple of times now and you could too Doctors want you to become hypothyroid because it is easier for them to treat

[KimKarenCat in reply to Pandora777]

Thank you for your response. This Is why it's best to find out from people who understand the reality rather than what dr says.

[Thyroidsam]

I spent 18 months on block and replace before coming off when my WBC was low. I then had 2/3 years of feeling 'normal' before my levels started to creep up again. I hadn't done much research at the time and was told that RAI was the answer.

I've rarely felt 'well' since RAI and seem to be having to adjust my medication dependant on weight, activity etc. etc. It was a real struggle to try and feel better until I started to do my own research and added T3. The NHS was awful.......

If I could go back in time, i'd have thought a lot more about having RAI.....

[KimKarenCat in reply to Thyroidsam]

Did you have a bad experience with RAI?

[asiatic]

You should have been given a third option ie. staying on ( probably ) a low dose of Carbimazole. As others have said you need to do your own research to decide what is best for you. Analysing your symptoms/ dosage/blood results since starting treatment are important indicators as to whether staying on Carbimazole ( which was my choice ) would be right for you. It can be overwhelming but there is no rush and lots of help available on this forum to help and support you.

[KimKarenCat in reply to asiatic]

Yes I can stay on it. But sick of not being able to work or predict what's happening to my body next. So long to wait from blood test to results and amending meds. I feel different weekly but can't change meds until I know for sure what's going on. On reflection of all the feedback however I feel I will stay as I am.

[Pandora777 in reply to KimKarenCat]

Thyroid disease is not a quick fix I’m afraid. Doctors seem to think giving you the correct medication will do the trick and send you on your way. My one an only Endocrinologist when I last saw him said to me “looking at your results everything looks normal now”. I felt like the walking dead at the time and was so down I burst into tears and said “ I dont feel normal” he then passed me a box of tissues and offered me counselling. I then got up walked out and never returned to his clinic. I hope yours treats you better.

[KimKarenCat in reply to Pandora777]

So sorry to hear your experience. I hope so to 🙏

[humanbean]

So many hyperthyroid patients are told they must have RAI or a thyroidectomy, but there is a third option - continue taking carbimazole or PTU permanently (or for as long as you need it). Doctors can't refuse to continue prescribing.

[Cavapoochonowner]

Hello there,I had a thyroidectomy in June 2022 due to graves disease.I have documented my journey on my profile if you care to have a look.I was on the NHS waiting list for about a year.I am in Yorkshire. I have had a few tweaks with my medication (I am on levothyroxine only) since then but compared to how I felt with graves I feel good and have never regretted my decision.I am open to answering any questions you may have and wish you luck.You are doing the right thing researching as much as possible as everyone is different.

[Pandora777 in reply to Cavapoochonowner]

It seems a lot of Graves’ sufferer’s have way more challenges than I have had. I luckily don’t have a large goitre or TED. I have also had long periods of remission. Hopefully     KimKarenCat does her research before she makes this life changing decision

Just read your bio I had a thyroid storm and it was absolutely terrifying I thought I was having a heart attack I collapsed while waiting in A&E I was shaking all over and they had to hold me down so they could stick things on me to monitor my extreme high heart rate I actually called my daughter to tell her her good bye Luckily I recovered but I forgot my log in details so shaws told me to join again which I did and I added again to my user name

[Cavapoochonowner in reply to Pandora777]

Sorry to hear about your thyroid storm,terrifying. I also think it is important to get as much information as possible before making any decision. I had 4 years really to think about it.Thyroidectomy was my only choice as I have TED.I felt confident that I had tried all my options and given it my best.The migraines were what really decided it for me.I was fed up of them and my quality of life wasn't great.I'm glad that I took.the time as I have never regretted my decision.

[Pandora777 in reply to Cavapoochonowner]

I am pleased you had a positive outcome

[KimKarenCat in reply to Pandora777]

Sounds terrifying.

[Pandora777 in reply to KimKarenCat]

It was but they are extremely rare so try not to worry it will happen to you

[KimKarenCat in reply to Cavapoochonowner]

Thank you. I may take you up on that? How is your scar?

[Cavapoochonowner]

Hello,My scar is 2-3 inches long and a pale purple now.I don't think you'd notice it if you didn't know it was there.Honestly I have never been bothered by my scar,even early on and it did look pretty shocking as it's in such a prominent place.It never hurt at all and I followed all care instructions. I covered it with a scarf that first summer to protect it,and now I always put suncream on it.

[KimKarenCat]

Thank you. In the hospital I asked how big it would be and they showed me some horrendous pictures. My sister had cancer removed so I know the fade alot. I really got the impression they were trying to put me off. When I googled at home myself I got less scarey pictures and ones of fading. I this nhs just trying to save money but scaring me tbh or the dr who looked Veey young, didn't have a clue

[Pandora777 in reply to KimKarenCat]

The actress Catherine Bell had her thyroid removed because of cancer many years ago her scar is hardly noticeable. Also my mother had part of her thyroid removed because of a large nodule and her scar faded to nothing

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