treatment

[Boating1]

hi all im due in September to get the radio active treatment for my over active thyroid which has been going on from 2009. What affects im i expecting

[pennyannie]

Hello Boating and welcome to the forum :

Can you please give us a little bit more information about your situation, what you have been diagnosed with and why this has been suggested to you ?

The most current research is suggesting that the longer one stays of the AT medication the better the outcome for the patient :

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

I had RAI thyroid ablation for Graves Disease back in 2005 and would not recommend this option to anybody.

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

If your diagnosis is Graves Disease are your eyes effected at all ?

If you don't know of Elaine Moore and her Graves Disease Foundation website I suggest you dip in and start reading up about this poorly understood and badly treated auto immune disease for which there is no cure.

elaine-moore.com

[Boating1 in reply to pennyannie]

Been diagnosed with over active thyroid and on 40mg of carbimazole for the past 11 years

[pennyannie in reply to Boating1]

What is the cause of your over active thyroid - is it Graves Disease or something else ?

Are you well on the Anti Thyroid drug ?

Have you been consistently on this dose of AT medication or have here been times when you have tried to adjust, reduce down or even come off this medication ?

Taking RAI either as a pill or a liquid will ultimately burn out your thyroid in situ.

You are then considered as primary hypothyroid and discharged out into primary care where you will be dosed and monitored by your doctor with T4 - Levothyroxine for the rest of your life which may, or may not resolve all your symptoms of hypothyroidism.

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

The thyroid supports you on a daily basis with trace elements o T1. T2 and calcitonin +

a measure of T3 at around 10 mcg + a measure of T4 at around 100 mcg.

Currently the NHS only prescribe T4 - Levothyroxine and if you wish to try other thyroid hormone replacement options you will need to be referred back to hospital or go privately for full spectrum thyroid hormone replacement medication.

20 odd years ago your doctor was able to treat you with all the treatment options for thyroid hormone replacement if T4 didn't work well for you - but now in 2022 due more to costs than medical need the options as we knew them, are not easily available.

Please do your research - I understand it has been a very long journey for you and you are likely worn down by it all and looking for a fresh start but primary hypothyroidism can be as challenging, if not harder to treat than hyperthyroidism.

Hypothyroidism is not ' as easy ' to manage as mainstream medics seem to think it is - as otherwise why are there now over 125 K people on this forum looking for answers as to their own thyroid hormone health issues.

[SlowDragon Administrator]

Welcome to the forum

You should get FULL thyroid and vitamin testing done now

Make sure you have optimal vitamin levels.

Having Graves’ disease frequently results in low vitamin D, folate and B12

Are you currently taking any vitamin supplements

What thyroid medication are you on?

Carbimazole?

For full Thyroid evaluation you need TSH, FT4 and FT3 tested.

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

Recommended on here that all thyroid blood tests early morning, ideally before 9am

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/

[FarmerDJ]

Hi Boating1, I had rai a few years back and had no side effects of that per say... however, my thyroid died much much faster than they said it would which affected my coordination when walking, felt like a thunderbird. When I went to see the rai specialist he didn't believe me and I argued for an emergency blood test. Within a day I was called to come in the same day to pick up 100mcg of levothyroxine to take immediately as my output had dropped to zero. If you feel there is something wrong, challenge it.Good luck.

[SlowDragon Administrator]

How much do you understand about RAI and subsequent hypothyroidism

It’s not just ….have RAI ….and be well

You will then become hypothyroid, how quickly is very individual

Starting on daily replacement thyroid hormones will be essential. How much you need can take several months to work out

Standard treatment is levothyroxine.

Some people do fine on levothyroxine, but approx 10-20% of patients don’t do well on just levothyroxine.

[Boating1 in reply to SlowDragon]

Dont know muc about it just on tablets since 2009 when my reading was over 120 so this bit has got me thinking about side effects of the radio active treatment

[SlowDragon Administrator in reply to Boating1]

If you drink RAI it destroys your thyroid

So you then become hypothyroid and it’s essential to take replacement thyroid hormones everyday

In theory…..it’s a little white pill…and you recover your health

In reality, for many people, it’s much trickier than that

What are your most recent thyroid and vitamin results

You need to test TSH, Ft4 and Ft3. Always get test done early morning

Essential to test vitamin D, folate, B12, ferritin at least once a year with Graves’ disease

Many U.K. patients forced to test privately to make progress

With hyperthyroid (Graves disease) or hypothyroid (hashimoto’s or after RAI) we MUST have GOOD vitamin levels

Please add most recent results and ranges

Or get FULL thyroid and vitamin testing done privately now

Only do private testing early Monday or Tuesday morning, not in a heatwave

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Come back with new post once you get results

[Fruitandnutcase in reply to Boating1]

If as you say you ‘don’t know much about it’ then it is really in your interest to find out as much as you can and as fast as you can.

I’m confused as to what reading was over 120.

If you feel well on your antithyroid drug why do your doctors now want to take you off it after such a long time?

Are they going to stop it and see what happens before deciding on RAI?

You may well go into remission and not need to have radioactive iodine treatment.

As the others say - some people are perfectly fine after RAI but others are not. Some GPs are sympathetic and understand the thyroid and can prescribe enough replacement drugs to keep you feeling really well but a lot of doctors haven’t a clue.

So, unless there is an urgent medical reason to obliterate your thyroid - in which case you would go along with that - I would tend to try and stick to carbimazole - but that’s just my personal opinion, I’m not a doctor.

If you can afford to have a private blood test done - I use a Medichecks one that covers all of the thyroid tests, plus vitamin D3 and B12, ferritin and folate, autoimmunity and inflammation - 10 markers in all. I use their home fingerpick test and do it at home. You send it off and get the results in a couple of days. Medichecks often do ‘offers’ on Thursdays or there may be a discount code on the TUK website (I’m not sure about that one though)

Post your results on here and someone (or lots of people) will offer advice but I’d find out as much as possible about my condition before I’d have RAI especially if you feel well as you are.

[Boating1 in reply to Fruitandnutcase]

When of meds the thyroid level starts to go up again so they have been doing bloods every 3 months to check readings

[Fruitandnutcase in reply to Boating1]

That’s a real pain isn’t it.

[YSpencer]

Hi, l had my treatment some years ago but l can only guess that things haven’t changed. I went into the consulting room , had a quick chat with the person administering the dose. It was in a flask on the table with a glass of water. He gave me instructions on how to take it and then left the room. I opened the flask took out the pill and swallowed it. I had no after effects. I had to stay in for 7 days as you are radio active and are supposed to keep away from other family members and pets. On my first visit a dose was suggested , sorry l can’t remember what it was, l asked if that was the lowest dose and he said no so l asked for a lower dose which l subsequently got. They try to make your thyroid normal but that rarely happens so you become under active and have to take Levothyroxine. Hope this helps. Good luck Yvonne