Surgery or not.

[JoMax]

Hi everyone.Had my one year appointment with consultant yesterday in hospital which was a change from the last year as all over phone. I knew something was coming.

She basically said wasent happen as throughout the year never found right dose or balance for it. Had gone from hyper to hypo very quickly with very bad results mentally and physically.

She told me it was time to discuss alternatives. The 2 being radioactive iodine and surgery. Her opinion being surgery was the best one for my age(48) even with the risks and even with having to take a pill then forever.

I was diagnosed with Graves a year ago and hospitalised with symptoms.

Just wanted to ask those who have gone down the surgical route what has the outcome been like? Better quality of life,less symptoms nw? Was it a good fit for them?

I don't know what to do. So will take time. My grandmother had Graves and had her thyroid removed. Which I never knew until I got diagnosed. She lived long and no complications or anything that I knew off.

I know everyone is different.

Glad of this community as I have no one to talk to about this..

Appreciate and feedback.

Thanks

Jo

[PurpleNails Administrator]

Why are Hyper to hypo quickly? Are you monitored regularly & having dose adjusted appropriately? If you being managed well & you have naturally occurring unpredictable fluctuations then there is option of block & replace (B&R)

B&R involves higher antithyroid to completely block function with replacement hormone to restore levels. This has stabling affect.

A year on antithyroid isn’t very long dr seems to be a rush to treat & discharge you.

I delayed RAI which I was told was to be my treatment early on. You don’t need to proceed until / if you are comfortable.

Most do very well after treatment, both RAI & surgery, but a smaller percentage struggle to be well with replacement T4. Having optimal nutrients and full pre & post testing & complete monitoring after treatment is best way to ensure you are well.

[JoMax in reply to PurpleNails]

I get checked every 12 weeks(I'm in Ireland) I think she just wanted to talk about other options nt necessarily for right away.She was also clear if I met the surgeon to talk about it there was still no pressure to have surgery.

I did mean to ask about block and replace bt what with everything I totally forgot. I should have the further antibody result soon and will definitely ask then.

Thanks

[PurpleNails Administrator in reply to JoMax]

6 weekly is standard until stable. ie 2 consecutive ideal levels without an adjustment, only then is 12 weeks is suitable.

What sort of adjustment has been done. 5mg is a small tweak but greater than that is a big change which needs closer follow up…. It’s not surprising your levels are changing too much. You need more frequent monitoring.

[JoMax in reply to PurpleNails]

I agree. Unfortunately thats the system i was put into . My own doctor wouldnt even help with anything as being seen by consultant in hospital.I would have been on 40mg a year ago when at my worst and beta blockers. Was left on everything too long amd went so far hypo I could barely walk and my mental health was at its worst ever in my life. Taken off beta then on 10mg.

Then hyper so back to 20mg.

Then hypo so 10mg one day and 5mg another.

Then very hyper so up to 20mg.

Now hypo so off meds for 5 day then she wants me to go on 10mg per day.

It's crazy to me they wouldn't monitor someone more frequently especially after year one of diagnosis.

Anyway will be glad to have some energy back with the break from the carbimazole.

And definitely nt rushing into anything.

[PurpleNails Administrator in reply to JoMax]

That’s terrible, do you have any option to privately test?

& I also feel stopping / starting is a terrible idea. It is a short stop, I know, but it’s a double change. & over all a 10mg drop in carbimazole, that can have a big impact.

Carbimazole lowers new production the levels in your system takes time to setttle.

[Cavapoochonowner]

Hello there,I have Graves and a similar experience to you regarding monitoring. Left too long on a dose,not monitored often enough,my NHS endo a diabetic specialist.Eventually I decided on a thyroidectomy which I had in June 2022 after a year on the waiting list.I have had graves since 2018 and never achieved remission.

I don't regret my decision,and I feel better over all.I am going through a dose adjustment at the moment.I find I have had to educate myself and use private blood tests to monitor myself more frequently.I have basically resigned myself to the fact my GP will not do it,I'd just rather do it myself with help and support from this forum.

I have documented my story in my profile if you would like to read it.I have other health issues also but you could skip over those.

I feel better taking control myself rather than sitting waiting for help that either takes ages to come,or doesn't arrive at all.

I am willing to answer any questions if you have any specific ones.

I have also found I have to take care of myself more now I'm thyroidless. For example making sure I eat as well as I can,that my vitamins and minerals are optimum, I take enough rest and pace myself.

Wishing you all the best.

[JoMax in reply to Cavapoochonowner]

Thank you for sharing. I will have a read. That's really helpful.

Wishing you all the best too.

[pennyannie]

Hello JoMax :

You might like to take on board the most recent research we have :-

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

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

At the end of the day you are looking at an Auto Immune disease for which there is no cure -

and your thyroid the victim in all this, and not the cause -

as the cause is one of your immune system having been triggered to turn and attack your body - and quite why this has happened is of course the 64 million $ question - and you are best placed to know of the reason.

Yes there is a genetic predisposition and you have identified your Nan -

I'm afraid treatment options through the NHS for hypothyroidism are now minimal compared to even 20 years ago, with many forum members having to self medicate and buy their own thyroid hormone replacement to stay well.

I have Graves and had RAI thyroid ablation 2005 and deeply regret this treatment and now self medicate in order to have my life back :

The most well rounded of all the research I read is that of Elaine Moore's books and website:

elaine-moore.com

[pennyannie in reply to pennyannie]

Just seen that I have given you all this information before -

I'm sorry you had such a problem on the AT drug :

Might be worth trying Block and Replace where a higher dose of the AT drug is prescribed to fully block your thyroid production BUT a measured dose of T4 is also prescribed so you do not risk falling too far through the ranges and becoming hypo - in this way it should stop the extremes of both hyper and hypo that you appear to have been dealing with.