graves disease and after a year on carbimazole been told I need to have radio therapy ( although the tablets are keeping it under control )

[Hsbrown1]

anyone else had radio therapy?

[kittyelen]

I'm a bit confused if the tablets are working why are you not trying to come off first?

I was on carb 12M and levels went in range, I have now been med free since beginning of this year but I am still borderline levels. I have a check up on Thurs, if it is going out of range again I will need to go on meds or if in range/just borderline I think they are keeping me med free

Have you been on Carb before or is this the first time, I was told you can be on it 12-18 months and if it gets in control then they try taking you off it. If levels stay stable pretty much it's a blood test every year as you can relapse it is just you don't know how long till that could be / if it does happen!

PS sorry If I am getting the wrong message radio therapy is for other treatment do you mean they have diagnosed you with something else aswell?

[pennyannie in reply to kittyelen]

Hey there again :

I think you have read it correctly - as for some people - me included back in 2005 - RAI thyroid ablation is the only option offered once the 15-18 months widow with AT drugs comes to an end.

I was well on the AT drug, I was told at my very first endo appointment that i was to have RAI the following year and no one tried to even help my ' find remission ' and try to get off the AT medicine.

I think it depends on the skill set within the hospital endo team and the hospitals directive on how to treat Graves Disease.

I think t's all a question of degree of incapacity and if well on the AT drug it's the obvious option for the patient - but this does mean more O/P appointments and the NHS is incentivised to reduce O/P waiting list times. not increase them.

From memory your Graves was very mild wasn't it with T3 and T4 not much over range at diagnosis - hope you are doing ok :

Did I ever send you this : pubmed.ncbi.nlm.nih.gov/338...

or this elaine-moore.com

[kittyelen in reply to pennyannie]

Oh really that's bad, yeah I was told it wasn't extreme I think T4 was just over 30 at the highest and T3 over 10

Just found my last readings TSH 0.18, T4 17.2 and T3 5.6 so I will see if there is much difference tomorrow.

My endo nurse is super good she always calls right on time, it's a very quick chat but she knows her stuff and is happy with how compliant I am and how I have looked into things myself too. Last time we spoke if it goes well and in range I would be discharged to the GP but if still borderline they monitor for about a year after coming off Carbimazole so if a relapse in the year I would go back on meds (Noting I said I may want a baby which is why they say meds not RAI for me, saying that I don't know if we will this year but it kind of helps as they're not going to push the RAI to me)

[pennyannie in reply to kittyelen]

OK then good - for me at 56 at diagnosis there wasn't a conversation around family planning :

Just stay on track and even if you change your mind about future plans keep it to yourself, though be aware your nose may grow as a consequence of telling untruths !!!!!

[kittyelen in reply to pennyannie]

It's not untruth lol it's very difficult as I am 36 so need to be realistic what if I were to have RAI then a year later really want a baby it would mess things up. I think whatever they say online you need to ease on the side of caution I think it could mess things up a few years down the line with fertility.

[pennyannie in reply to kittyelen]

Yes, of course, I was trying to introduce a little levity into a serious subject .

[helvella Administrator Thyroid UK]

We see many member who were told that they must have radio-active iodine treatment for Graves.

Some have had it. Some have been OK with it. Others have not been OK due to the consequences of that treatment.

Others have not had that treatment but have continued for years on (usually) Carbimazole.

There is rarely any medically justified rush to make your mind up, to take the treatment. So don't let yourself be pushed faster than you wish.

Do you have some more information to add? Like blood test results? Current medication?

[PurpleNails Administrator]

If your stable on carbimazole you can opt to stay on it. The doctor can’t refuse to keep prescribing it - or make you undergo a treatment.

I have a nodule and was referred for RAI after 1st appointment.

I said was wasn’t ready for RAI and that was 3 years ago. I’ll let them know if I change my mind.

There are those that have undergone the treatment and had an expected outcome and have done very well on replacement. I expect there are many.

Others do have difficulty afterward & may seek help on forums. There has been a large study showing outcomes are judged better for those who remain on medication or opt for surgery, but there’s no facts & % to accurately compare.

The suggested time limit (of around 18 months) is arbitrary as doesn’t seem to be based on any scientific basis. Carbimazole does not accumulate risk with use (or cause damage) the risk remains the same. The risk are present but very low. eg 1% (such as drop in white cells & liver issues). If the risks were high you’d be regular monitored with blood tests, but if you asked for routine blood test, doctors would like say it’s not necessary. We will test if you develop symptoms suggesting an issue.

Doctors tend to overemphasis the risks, without stating facts.

I’ve come the conclusion as the cost of continued specialist monitoring is expensive, medics view hypothyroid treatment easier to manage. It’s a policy set with a one size fits all approach & finance / efficiency partly as a factor.

How much carbimazole do you currently take?

Was your Graves confirmed by TSI or TRab positive result?

What are you current levels? TSH, FT4 & FT3.

Do you have eye issues? RAI can worsen / trigger thyroid eye disease (TED).

[pennyannie]

Hello Hsbrown and welcome to the forum :

Graves is an auto immune disease and for which there is no cure.

The thyroid is the victim in all this and not the cause as the cause is one of your immune system attacking your thyroid and it is because the thyroid is a major, important gland, that the symptoms experienced result in your seeking medical help.

The NHS mainstream believe Graves is life threatening if not medicated and a prescription for an Anti Thyroid drug, like Carbimazole or PTU is given which blocks your own thyroid T3 and T4 thyroid hormones rising any higher and slowly your T3 and T4 drop back down into range and your symptoms hopefully relieved and with some patients also prescribed a beta blocker.

The NHS generally allocate a window of around 15-18 months treatment with an AT drug and all this does is buy you time, and the hope is your immune system response calms down again and you can get back on with your life without any medication.

The most current research is suggesting that the longer the AT drug is taken the better the outcome for the patient, but this is likely the most expensive treatment option and possibly needs a more enlightened endo and hospital trust to implement it.

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

I had RAI thyroid ablation for Graves back in 2005 and knew no different and deeply regret this treatment - I was well on the AT drug and given an option would have stayed on the Carbimazole but was told it was too dangerous to stay on so drank a toxic substance that burnt out and destroyed my thyroid in situ ?????

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

Details on my profile page - just press on my name icon and view profile - if you wish.

As to why your immune system has been upset and triggered an attack on your body is the 64 million $ question.

Graves is said to be stress and anxiety driven AI disease, and once triggered, more likely to happen again. There could be a genetic predisposition to Graves with someone maybe a generation away from you with a thyroid health issue, or it can occur after a sudden shock to the system like a car accident or unexpected death of a loved one or it may just happen totally " out of the blue ".

You might like to read further around Graves and the most well rounded website I found is that of Elaine Moore as she has Graves and went through RAI and finding her health not restored started researching this poorly understood and badly treated AI disease herself.

Sections on alternative and more holistic treatment options are of particular interest and learning what you can do for yourself to possiblr adjust your life / work balance maybe relevant

Now 20 odd years later Elaine has several books published and has a world wide following and a respected, acknowledged researcher in this and other related health conditions.

elaine-moore.com

Just to reap as there is nothing on your profile :

Can you please confirm you have in writing that you have a positive and over range Grave's antibody - written as either a TSI ( a thyroid stimulating ) or a TR ab (a thyroid receptor blocking ) result and range:

Do you have your original blood test results and ranges for your TSH, T3 and T4 prior to starting the AT drug ?

When metabolism isn't running just right, either too fast ( hyper ) or too slow ( hypo ) the body has trouble extracting jey nutrients from your food no matter how clean and fresh you eat.

It would be in your best interests to arrange for a blood test for your core strength vitamins and minerals, namely ferritin, folate, B12 and vitamin D as these may have nose dived during this first phase of illness and pulling you down further than necessary, and if you post the results and ranges we can advise where optimal levels need to be, for optimal health.