Iodine treatment?

[Abimilne]

Hello, due to see my consultant this afternoon after me not reacting well to the medication they were treating me for over active thyroid. It was lowering my white blood cells, has given me Antithyroid Arthritis so don’t want to go back on. I am going to ask him about iodine treatment and just wondered if anyone on here has had it and what their experience? Have read it can make you go underactive but that’s easier to treat, is this true? Has anyone with an overactive thyroid found treatment to be straight forward? Thanks Abi

[RedApple Administrator]

The Iodine question comes up regularly here on our forum. There's a very useful post about iodine here. See if it has anything helpful for you. healthunlocked.com/thyroidu...

[SlowDragon Administrator in reply to RedApple]

I think she means RAI ……zapping thyroid out completely

Not iodine

[RedApple Administrator in reply to SlowDragon]

Ah, of course! Thanks SD, obviously not quite on the ball today!

[SlowDragon Administrator]

treatment options for hyperthyroidism discussed here

thyroiduk.org/if-you-are-hy...

posts that mention RAI

healthunlocked.com/search/p...

Important to get vitamin D, folate, ferritin and B12 levels tested

Thyroid disease often results in low vitamin levels

Getting vitamin levels tested and improved to good levels can help reduce symptoms/issues

[humanbean]

I am going to ask him about iodine treatment and just wondered if anyone on here has had it and what their experience? Have read it can make you go underactive but that’s easier to treat, is this true?

The iodine that is used to treat hyperthyroidism (overactive thyroid) is radioactive. The idea is that the thyroid will "soak up" the radioactive iodine (RAI) and will kill off some of the thyroid cells, thus reducing the output of thyroid hormones. But unfortunately it isn't only the thyroid that ends up dosed with RAI, it can settle in other tissues as well.

There is a problem in that the dose of RAI is guesswork. You can be given too much and end up severely hypothyroid, or have too little and end up still hyperthyroid, and then need a second dose or even a third.

Some people on the forum have had RAI and did very well on it. Some have regretted it every day. Unfortunately nobody knows which group they are going to end up in.

Having RAI increases the risk of the patient developing Thyroid Eye Disease, which is mostly associated with hyperthyroidism but can also occur in people who are hypothyroid.

Doctors will tell patients that hypothyroidism is easier to treat than hyperthyroidism. What they mean is that it is easier for the doctor, not the patient. After RAI the patient is discharged back to the tender care of their GP and they never see the hospital doctor again.

It isn't necessarily easier for the patient to live with the after effects. So getting a patient to agree to RAI is convenient for the doctors, but not so convenient for the patient who has to fight for adequate testing and treatment once hypothyroid.

Hypothyroidism is far more common than hyperthyroidism, and most of the posts on this forum are about people who are hypo, so just reading this forum will let you know that hypothyroidism isn't always the walk in the park that doctors insinuate it is.

Have you been prescribed both of the options for anti-thyroid treatment? You might do badly on carbimazole but do alright on PTU.

bnf.nice.org.uk/treatment-s...

bnf.nice.org.uk/drugs/carbi...

bnf.nice.org.uk/drugs/propy...

A good website for people who are hyperthyroid, which also has a forum is this one :

elaine-moore.com/

pennyannie has had RAI and often posts here.

You can see her posts and replies on this link :

healthunlocked.com/user/pen...

Whatever you do, don't rush to treatment. Take your time, and research everything that you can find on your treatment options.

Please note that if you delay or refuse to do what the hospital doctor or GP suggests you cannot be denied treatment when you are ready to continue, in any direction.

[PurpleNails Administrator]

I not had the treatment myself but the others say the process is very straightforward with a quick out patient appointment where you take pill or drink then go home to isolate 2-3 weeks.  

Most, over 2 thirds who have Radioactive iodine treatment become hypothyroid within weeks, but the full effect can take many months.   

10% need to have an additional RAI. usually given after 6 months.

Below is link to a leaflet hospitals often give out.  In my own experience this leaflet was passed / posted to me (multiple times) as doctors did not seem prepared to discuss or answer any questions saying “read the leaflet, all the information is it there”.  Hopefully your doctor will be more supportive.

btf-thyroid.org/treatment-o...

Your specialist will prefer RAI over surgery for example as it’s easily administered and then you can be discharged from specialist care.  

Doctors will often explain hypothyroidism is easily treated, & logically those who respond as expected do not seek help on a forum.  A minority do struggle after treatment and have issues as Levothyroxine does not restore thyroid levels.  This is often due to GP treating by TSH or poor nutrients affecting conversion to FT3 for example. 

Recommend you have a full thyroid test & work on optimal  nutrient levels, folate, ferritin, B12 & vitamin D.  As you’ll them need a bench mark for later.  

If you learn how to manage levels & advocate for yourself you can ensure your levels are best managed & prevent issues occurring.  

Hope the appointment goes well & let us know how you get on.

[bantam12]

I had RAI some years ago and after 30 odd years of Graves it was the only option left for me.

It was very simple, zip to nuclear med department, take a tablet and go home. I didn’t have to isolate but for a week or two just kept a reasonable distance from my young children, I could still do the school run and so on.

I went hypo within a few weeks and haven’t had any problems since, Levo works well for me and is a lot easier than dealing with constant relapses with Graves.

[pennyannie]

Hey there again :

Have you been able to get on-line access to your medical records and can now see your blood test results ?

Can you also see which antibodies were found over range and positive and have the medical evidence and proof of positive and over range TR ab or TSI - for Graves Disease.

There is an alternative to Carbimazole - PTU for short - Propylthourcul if you feel your arthritis is directly caused by the Anti Thyroid drug rather than from the Graves Disease.

The most recent research we have is suggesting the longer the patient stays on the AT drug the better the outcome for the patient :

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

This further research is alarming in that this treatment is still offered, sometimes as a first and only only option and the drawbacks and potential side effects, which I believe have now been found, to include a risk of cancer are rarely, if ever, discussed with the patient, by medical mainstream.

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

I think you mentioned in your first post some days ago that you hadn't been overactive for these past 10 years so presume you were ill before some years ago with the same issues - and that there was no treatment offered - if it was/ is Graves Disease - it is considered life threatening if not medicated ?

Graves is an Auto Immune Disease - there is no cure - and it is not resolved by having a thyroidectomy or drinking toxic waste - and in some patients these treatments exacerbate symptoms.

All these invasive treatments do is flip you permanently into hypothyroidism and living without a thyroid is not ' the walk in the park ' and currently the treatment options are only limited to 1 with all other options removed by the NHS due to costs.

If you do have Graves or Hashimoto's - these are both AI diseases and the issue is one of your immune system having been triggered to attack your body rather than defend it .

The thyroid is the victim in all this and not the cause - as the cause is one of your immune system response - and that's a whole other conversation on what has triggered your immune system to turn and attack your body rather than defend it ?