Surgery or radioiodine treatment.

[Babswilldoit]

I have just been to see my endocrologist. I have 10 weeks to make a decision whether to have the surgery or radioiodine. I have two children age 5 and 7. Please help me make this very difficult decision. Many thanks. I am a hairdresser how many weeks would I need off work. Regards Barbara

[helvella Administrator]

I am far from the right person to advise you.

I think it might help to explain why you need either surgery or radioidine? The more you can tell us, the better.

In general, setting a definite decision date seems the wrong way of respecting a patient. What will they do in ten weeks and one day if you have not made your mind up?

[cazmania7]

Everyone is different but I wish I had kept my thyroid. I felt like I only had two options - surgery or RAI. Turns out you can stay as you are on the medication. Sure, they reckon the meds are bad long term but I felt fine with Graves. Nine months after RAI I became sick and still am. I am hypo now and they reckon I have chronic fatigue syndrome. Wish I knew then what I know now. But, some ppl have it and are fine, of course.

[Angel_of_the_North]

No one can force you to have either. I believe you have to stay away from children and pets if you have RAI, but I could be wrong.

[pennyannie]

Hello Babswildoit

What have you been diagnosed with that needs you to loose your thyroid ?

The thyroid is a major gland responsible for full body synchronisation, including your mental, physical, psychological, emotional and spiritual well being, your inner central heating system and your metabolism.

Living without a thyroid comes with it's own set of problems especially when you maybe unable to access the full thyroid hormone supplementation from the NHS.

I was diagnosed with Graves Disease in 2003 at age 56 and underwent RAI in 2005. I wasn't given any treatment choices nor any understanding of my diagnosis and I deeply regret this action.

I was well on the Carbimazole, continued to work, and given the option I would have liked to have stayed on the anti thyroid medication at the lowest possible dose.

I wasn't offered surgery and though I don't believe anybody wants to have their throat slit I believe it a safer, cleaner and more precise procedure than drinking down a toxic substance that goes throughout the whole body.

RAI is a toxic substance that slowly burns out the thyroid in situ.

RAI is known to be taken up by other glands and organs in the body.

RAI may well exacerbate any eye issues you may have and may well indeed, cause you to develop TED - thyroid eye disease.

RAI may compromise your immune system.

RAI may compromise your vitamins and minerals.

RAI induced primary hypothyroidism can be more difficult to treat.

RAI induced primary hypothyroidism can trigger fibromyalgia type symptoms.

You might like to take a look at the following :-

Professor Toft - Thyroid Hormone Replacement - A Counterblast to Guidelines - 2017 :in which he states :-

" I am so concerned about the state of advice on the management of primary hypothyroidism that I am increasingly reluctant to suggest ablative therapy with iodine-131 or surgery in patients with Graves Disease irrespective of age or number of recurrences of hyperthyroidism :

There is also an interesting article from the Thyroid uk Harmony newsletter XXVI - 2019:

ncbi.nlm.nih.gov/pubmed/306... : I hope the link works !!! I've " L " plates on.

[Lora7again]

I was given this choice and said no because I knew I would not be treated adequately by the NHS because they have no idea how to treat thyroid patients. They could not diagnose me 12 years ago and not a lot has changed since. If you do this you will end up feeling ill and alone because you be left to do your own blood tests because the NHS only test the TSH which does not give a good indication of thyroid function.

Here is a link about someone who went down that route.

dailyrecord.co.uk/news/real...

[dusty2 in reply to Lora7again]

There are lots of people who have RAI successfully. I find it frustrating people being scared into not having it by people who have not had it.

At no time after RAI did I feel ill or alone. I was seen regularly at hospital & GP surgery for quite a few years after having it. I have always been told if I feel I need blood tests sooner than my appointment to phone nurse. Luckily I have never needed to.

Because I felt so ill before having RAI for me it was the best thing I did.

[Gingernut44 in reply to dusty2]

Well dusty2 you are one of the lucky ones - if I knew then what I know now I would never have had RAI treatment. Unfortunately I was pushed into having it and haven't been well since, almost two years now, basically, my life as I knew it has been destroyed

[dusty2]

Hi Babswilldoit,

I had RAI without any problems.

Mine was timed for just over 3 weeks before I went on holiday as you do not know who you will be in contact with on flight. They explained it could be someone pregnant or not even knowing they are pregnant sitting beside you or could be a child.

I didn't have young children but was told to have no close contact for 3 weeks. They give you leaflets explaining what you can & cannot do. Simple things like going to shops were also not advised because of contact who was serving you.

Although it was just over 3 weeks when I went on holiday I discovered it was still in my system as I was setting off all the immigration officers personal alarms.

[Lora7again in reply to dusty2]

I personally would not go down that route ......

[Lora7again]

Why do you have 10 weeks to make a decision? I said no and I have not regretted my choice because I did not want to be left alone with no support from the NHS who have no idea how to treat anyone who hasn't got a thyroid. They are clueless and you will be jumping out of the frying pan into the fire and face a lifetime of feeling extremely ill because of NHS guidelines ... sorry to be blunt but I believe I am speaking the truth.

[SlowDragon Administrator]

How long have you had Graves?

Why can't you stay on carbimazole?

Are your vitamin levels optimal?

Ask GP to test vitamin D, folate, ferritin and B12

As you presumably have Graves' disease.....Are you on strictly gluten free diet ?

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal

While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first

Assuming test is negative you can immediately go on strictly gluten free diet




(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)




Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

Excellent website for Graves' patients by Elaine Moore

elaine-moore.com

[Lora7again]

The only time I would ever have my thyroid removed is if it was cancer. I am now on my second remission and I feel well so why would I want to be on levothyroxine for rest of my life if there is a chance I would go into remission like I have twice now? I know some people do well on Levothyroxine because I have spoken to them in real life and on line. Just before Christmas I was having my hair done and I was admiring a lady's thick hair in the next chair. I told her my hair used to be as thick before I got thyroid disease and was amazed when she told me she was hypothyroid and on Levothyroxine. Some people do ok on Levothyroxine and she was one of them and had no need to join support sites for help. I did notice she was very overweight and did wonder that even though she had thick hair and felt well she was fat and I think perhaps her levels were not as they should be. Of course I did not say she was fat I just told her she was lucky the drug suited her because not everyone was as fortunate.

[Dovedale]

Putting a 10 week timescale on a decision seems harsh on you Babs. I do know how pressured you can feel though - I have had Graves for two years and my levels are still volatile and I have now plunged down the rabbit hole of TED with pressure to start on IV steroids. I see a different Endo each time and get different versions of the truth and can see they have clear treatment preferences - one was particularly keen on RAI (I'm not for various reasons including my daughter being pregnant) and was quite grumpy with me that my TED prevented going ahead with this.

With another Endo I started saying I was concerned about the latest results and was told "not to get in a tiz". I told him that I found that comment patronising and he seemed to respect my opinion a little more - not had him since though so I am probably on a list somewhere!

Hope you are able to move forward in a way you feel confident and informed with. This site is invaluable.