hyperthyroidism

[Sheilax]

hi everyone after been on Carbimazole 50 mg for 2 yrs my constant has recommended radioactive iodine treatment I’m really worried should I go for it or not has anyone else had this treatment and has it worked for them if yes what are the symptoms please. Thank you

[pennyannie]

Hey there again :

I remember writing to you a couple of times in the past - previously when you relapsed you were prescribed 5mcg Carbimazole - and now taking 50 mcg - is this correct ?

Did you ever get any blood test results including the positive antibodies found in your blood and the medical evidence of the diagnosis of Graves Disease ?

Do you know how to find your previous posts and all your replies -

if not - just press the Icon marked Profile on this page -top right on my laptop sitting alongside My Hub - Chat - Post - Alerts and Menu subsections.

We do now have some research that you may not be aware of :-

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

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

The Radio Active Iodine is I believe, now, just a pill to swallow and once ingested tends to be taken up in the thyroid and slowly burns out the thyroid in situ causing you to become primary hypothyroid.

You will then take medication, thyroid hormone replacement, for the rest of your life and the first line NHS treatment option is T4 - thyroid hormone replacement.

T4 is a pro-hormone and needs to be converted in your body into T3 the active hormone - that runs your body - and said to be around 4 times more powerful than T4 :

A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1. T2 and calcitonin + a measure of T3 at around 10 mcg + a measure of T4 at around 100 mcg.

Some people can get by on T4 only medication.

Some need to add back in a little T3 - to replace that little bit they lost when their thyroid was disabled.

Others find their health restored better taking Natural Desiccated Thyroid which contains all the same known hormones as that of the human thyroid gland and derived from pig thyroids, dried and ground down into tablets referred to as grains with each grain containing a measure of both T3 and T4.

Should your health and well being not be fully restored on T4 only medication your doctor will need to refer you to endocrinology to be assessed for any other treatment option - and you may get an option of a T3 prescription - likely at a similar dose level to that your thyroid once supported you with.

Should you wish to trial NDT - the most full spectrum of all the thyroid hormone replacement options - I think you will likely need to go Privately where all treatment options available.

If you go into Thyroid UK - www,thyroiduk.org - there is a list of both Hyper and Hypo symptoms - so you could tick box this and see what potential symptoms you may experience -

I would guess reading your past posts on this forum you will have experienced both sides of this seesaw of symptoms -

no one chooses to be either hyper nor hypo -

and having had RAI thyroid ablation back in 2005 - I can't recommend this treatment option though read others saying they are perfectly fine and 100% well on T4 only medication.

If well on the AT medication - there is no reason not to stay on this medication long term -

we are looking at an Auto Immune disease for which there is no cure :

Please do your research - read around on RAI thyroid ablation - and the most well rounded of all I researched - 10 years too late for me - is that of Elaine Moore - books and now website - elaine-moore.com

P.S. When the body runs too fast as in hyper or too slow as in hypo - the body struggles to extract key nutrients from your food - no matter how well and clean you eat -

and non optimal levels of your core strength vitamins and minerals -

those of ferritin, folate, B12 and vitamin D can unnecessarily, compromise your health and recovery further -

so please get these blood tests run and we can advise where your levels need to be to support you through this phase of ill health.

[Sheilax in reply to pennyannie]

Hi pennyannie hope you’re doing well? Yes my was on 5mg for few years then on had a change to something else and now back on 50 mg Carbimazole . I do have graves diseases Aswell ! My one eye is floppy than the other and Vision is getting bad especially if a morning time .

[pennyannie in reply to Sheilax]

Are you seeing a specialist for these eye issues ?

Have you contacted TED - the Thyroid Eye Disease Charity - tedct.org.uk

as they can signpost you to the most appropriate medical centre where an endo and an ophthalmologist work together to find the most appropriate treatment option for you :

RAI is not recommended if there are any eye issues - if push comes to shove you should be offered a thyroidectomy.

[Shires08]

Hi Shelia

3 years ago I had hypothyroidism . My levels were really bad and I needed total thryoidectomy however to enable this I needed to take lugols ( iodine ) twice a day for 10 days to reduce my thyriod hormone level so it was safe to operate.

Lugols was just a small amount of liquid to drink. I had no side effects.

I was in hospital for the duration however I'm not sure if this is normal practice. I was going through this procedure during lockdown and my bloods were neutosepis at the time

Hope things go well for you

[helvella Administrator in reply to Shires08]

It is a common approach to ensure it is safe to operate. If the dose and timing are right, it should have few or no side effects.

[Sheilax in reply to Shires08]

Thank you

[Sheilax]

Thank you helvella x

[jnh2]

Hi Sheila, not sure if this helps - this is my approach/viewpoint. I am also hyperthyroid with diagnosed Graves in 2018. On and off carbimazole. Consultant often suggests RAI but I respond well to Carbimazole when I relapse. Tend to start off with high dose (40mcg taken as 20mcg twice per day) and am now down to 5mcg which I take once a day as tablets are too small to split. Given I seem to tolerate carbimazole well, I intend to stay on it longer term this time and not go down the RAI route. Glad to find links to research from this forum suggests long term carbimazole use can be done with few side effects. I do take regular blood tests via NHS. My vision is also being monitored.

[pennyannie in reply to jnh2]

Just edited one of those links as I had made an error in typing it in:

should be ok now if you were having trouble :