I need your help I'm in Germany and my sister h... - Thyroid UK

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I need your help I'm in Germany and my sister has a hyper thyroid she has been suffering 6 years ago.is nuclear treatment is dangerous her?

Lulials profile image
18 Replies

She doesn't feel well because of the thyroid she is 30 years old I'm scary to dear about nuclear treatment is it safe?

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Lulials profile image
Lulials
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18 Replies
shaws profile image
shawsAdministrator

Hello, welcome to our forum.

This is a link which will give you all the information on radioidine for hyperthyroidism.

nlg.nhs.uk/IfP/single/IFP-0...

This is also an excerpt of an article in Pulse Online by Dr Toft who was President of the British Thyroid Association. This will give your sister the pros and cons of several procedures.

5 Patients with hyperthyroidism often ask for advice on drug treatment versus radioiodine therapy. Can you summarise the pros and cons of each?

The three treatments for hyperthyroidism of Graves’ disease – antithyroid drugs, iodine-131 and surgery – are effective but none is perfect.4

Iodine-131 will almost certainly cause hypothyroidism, usually within the first year of treatment, as will surgery, given the move towards total rather than subtotal thyroidectomy.

There is no consensus among endocrinologists about the correct dose of thyroid hormone replacement so patients may prefer to opt for long-term treatment with carbimazole. Standard practice is that carbimazole is given for 18 months in those destined to have just one episode of hyperthyroidism lasting a few months.

But there’s no reason why carbimazole shouldn’t be used for many years in those who do relapse. Any adverse effects such as urticarial rash or agranulocytosis will have occurred within a few weeks of starting the first course.

Iodine-131 treatment for toxic multinodular goitre is the most appropriate choice as hypothyroidism is uncommon. Surgery would be reserved for those with very large goitres and mediastinal compression.

Lulials profile image
Lulials in reply to shaws

Thanks for the reply and all the information I will check the link right now ..her appointment with the nuclear prof is next week I hope every thing will be ok

bantam12 profile image
bantam12

Do you mean radio active iodine treatment ? If so then no it isn't dangerous, it is used to treat Hyperthyroidism that either isn't controlled with medication or keeps recurring after remission.

The RAI will ablate the thyroid tissue and usually this results in Hypothyroidism, this can happen immediately or some/years afterwards.

For most people this is a simple procedure and the end of Hyperthyroid problems.

Lulials profile image
Lulials in reply to bantam12

Thanks for the answer you made me feel better because I'm worried too about my sister health situation right now because her heart beats too fast and she has an insomnia and her eyes are looking different now medicines were useless

bantam12 profile image
bantam12 in reply to Lulials

If she has thyroid eye disease then RAI is not usually an option as it will makes the eyes worse.

Lulials profile image
Lulials in reply to bantam12

Her eyes are looking bigger than before because of the hyperthyroidism ..well what is the other solution ?

Fruitandnutcase profile image
Fruitandnutcase in reply to Lulials

Total / partial thyroidectomy is another option - depends how bad her thyroid eye disease is.

in reply to bantam12

From posts on the forum here it seems that radio-active iodine treatment is to be preferred over surgery. the thyroid is very close to the vocal chords and there can be a lot of soreness, hoarseness and just plain damage to your voice. Avoid, especially if she's a singer! I had the radio-iodine pill. No trouble. I doubt it's worse than an X-ray. And we have loads of those during a lifetime.

Lulials profile image
Lulials in reply to

Would you please tell me about iodine experience did it harm you ?

in reply to Lulials

It didn't harm me at all. It got rid of my goitre at the first try (you can have a second

dose). There are some caveats in this country - don't cuddle small children, be close to work colleagues or share a bed for 5 days. My partner refused to shift into the spare room and it did him no harm (he was adamant and it was nice to be supported so positively). I think the medicos are, as for so many procedures, overcautious about the side effects. Like they say, in this country, that if you haven't got someone to drive you home then you can't have the cortisone injection you've come for (grump, grump).

Fruitandnutcase profile image
Fruitandnutcase

Yes, it is safe and will get rid of your sister's hyper problems but it also gets rid of your thyroid and your hyper symptoms might be replaced by hypothyroid problems which aren't much fun either.

I have just finished a round of antithyroid drugs plus thyroxine and have been told that if that fails then the next step is radio active iodine but if my Graves Disease (overactive thyroid with antibodies) returns then I want to go back to taking antithyroid drugs as it says above, not because the radio active iodine is unsafe but because I would prefer it if my thyroid was not killed off.

I know nuclear power / radiation is not popular in Germany is that why she is worrying?

Lulials profile image
Lulials in reply to Fruitandnutcase

Hello Liz ..no she isn't worried because of Germany she is worried of the method and the side effects she will see the nuclear dr next week and she will decide ,you said it might affect my thyroid can I know how and why?

Fruitandnutcase profile image
Fruitandnutcase in reply to Lulials

No it was probably the way I phrased it that wasn't clear. It will only affect her thyroid, not you, although she will have to keep away from people for a while after she has it done (if she has it done) but I'm sure she will be told all about that if she does.

Lulials profile image
Lulials in reply to Fruitandnutcase

Oh ok I got it..after reading a lot about the hyperthyroidism I realised that all options (the surgery or the Iodine )will not be the end of the thyroid problems ..I hope everything goes well :(

shaws profile image
shawsAdministrator

As you say her eyes have changed this is another extract from the article above:-

4 How does thyroid eye disease manifest itself and how is it treated?

Most patients presenting with the hyperthyroidism of Graves’ disease will have some evidence of thyroid eye disease, ranging from lid retraction with excessive lacrimation in bright light to marked exophthalmos with limited eye movements, diplopia and reduced visual acuity.3

The hyperthyroidism of Graves’ disease and thyroid eye disease are best considered as two separate, organ-specific autoimmune conditions, which frequently coexist. This explains why the eye disease may precede the hyperthyroidism or even occur for the first time years after successful treatment of hyperthyroidism.

The eye disease has its own natural history – a period of deterioration, followed by one of stability and ultimately of some improvement. But the ophthalmopathy will worsen if thyroid function is not controlled – whether through inadequate or excessive treatment.

The eye changes often persist for two to three years after successful treatment of the hyperthyroidism and although there may be significant improvement there is often residual disease, which can be improved by orbital decompression, strabismus surgery and eyelid surgery.

Of all treatments of the hyperthyroidism of Graves’ disease, iodine-131 therapy is associated most often with a worsening of the ophthalmopathy. For that reason it is relatively contraindicated in patients with significant eye disease. For these it may be better to use combination therapy with carbimazole and levothyroxine for the best possible control of thyroid function.

But if radioiodine is the chosen therapy, enteric-coated prednisolone 30-40mg daily should be prescribed for six weeks, as this has been shown to prevent deterioration of ophthalmopathy.

tilly83 profile image
tilly83

Your sister sounds poorly.... has she tried carbrimazole, I was on that and opted for monthly blood tests to tailor the dose, came down from 40mg daily (when t4 was nearly 70) to 5mg daily in six months. Now under control...... also looked at diet closely (gave up wheat, caffeine, cut dairy, sugar and alcohol)..... visit acupuncturist and massage therapist monthly, expensive but really helps me.... xx

in reply to tilly83

I agree with tilly83, I don't agree that RAI is safe. It's a rock and a hard place but I had eye disease and Graves and I had a TT but I wish I'd tried longer to get stable on CBZ or PTU before taking such drastic action. I know so many people who've had horrific side effects from RAI.

Rebecca

x

tilly83 profile image
tilly83

Hi Luli,

Sorry to have taken some time to get back to you. I have looked over all the other very good advice here and hope it helps you. It is such an individual decision that has to be carefully considered with all available facts and a little bit of gut instinct. It sounds like she's been struggling for a long time, I am not a medical person and I have only been diagnosed in the last year. I am forever crossing fingers, touching wood and hoping day by day I continue to feel OK knowing it could change and I'd be struggling to decide what to do. I am not sure what avenues your sister has explored in terms of complimentary health and diet. I really cannot comfortably give you any more advice than this. It is lovely that you are so caring for her. Best T x

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