Thinking of going through with RAI Treatment but having doubts.

[EmmaLouD79]

I've had Graves Disease for 7 years now and managed it on low doses of Carbimazole. This works well most of the time but find my levels still fluctuate and I still struggle now and again with muscle weakness, bruising, brain fog and low mood. I've learnt to manage these symptoms (kind of) but what I'm really struggling with is the eye puffiness I've had for nearly 2 years now. I constantly looked tired and have become really self conscious. I've had my eyes tested and they are fine and not bulging thank god! I just feel like I should try the RAI and see if this helps sort it out once and for all? Sounds petty but its really getting me down. Any advice would be great

[Lora7again]

I would think carefully about having RAI because a lot of women who have had it now regret doing it because they are struggling to get the right treatment afterwards. Elaine Moore had RAI and then regretted it so she started a support site.

Here is a link to her site which is full of lots of useful information and you can ask for advice on her forum.

elaine-moore.com/

[Meanbeannyc]

I am 14 months post op TT due to Graves disease.

I regret it every single day.

I mourn the loss of my thyroid. I am miserable.

[shaws Administrator in reply to Meanbeannyc]

I believe, due to having your thyroid gland removed, that the least the medical professionals should offer you is a T4/T3 combination.

Quite recently those who we'd imagine would know better, withdrew NDT from being prescribed, despite it saving lives from 1892 onwards. The fact that they stated 'misinformation' to do so is beyond belief. This decision left many patients stunned and horrified as they had been well upon it.

I have my gland and was far more unwell and more symptoms on levothyroxine than before I diagnosed myself.

Thanks to Thyroiduk I've resolved my clinical symptoms and am well.

So the BTA withdrew T3 and NDT and it is NDT that contains all of the hormones would contain. I wonder at the harshness and false statements made.

It's all very well removing a thyroid gland but it is an essential part of our body that permits our metabolism to function and that we feel well.

[Meanbeannyc in reply to shaws]

I’ve tried NDT.

My endo has no issues prescribing cytomel.

My labs are just always bad

[shaws Administrator in reply to Meanbeannyc]

T3 is the Active Thyroid Hormone (T4 is inactive and is supposed to convert to T3 but may not do so effectively). The fact that you have no thyroid gland at all a T4/T3 combination I think (and am not medically qualified) might help.

Our 'older' thyroid hormone replacement, prescribed since 1892 which contains all of the hormones a healthy gland would have, being made from animals' thyroid glands, was withdrawn recently by the BTA which I think is awful. The fact too that they made False Statements to do so just goes to show how inept they are.

I also tried all of the options but found that T3 alone resolved my symptoms. I don't have to take a high dose but those people who are 'resistant' to thyroid hormones have to take higher doses than would be normal for other people.

[Meanbeannyc in reply to shaws]

Hopefully between GreyGoose and my endocrinologist. I can function again soon. It’s been 14 months since my TT and have had one normal thyroid panel for 3 days.

[Meanbeannyc in reply to shaws]

I was doing OKAY on 100/10 at one point. But I started to rage out, have shortness of breath and other hyper symptoms. from the T3. So I dropped the T3 And increased my T4.

[shaws Administrator in reply to Meanbeannyc]

That's good. We are all different and we should have the choice of trialling different hormone replacements. It's much more difficult now as there are less options now.

[Meanbeannyc in reply to shaws]

My endo does check my frees and TSH.

She’s supportive of higher dosing, cytomel. Etc.

[madge1979 in reply to Meanbeannyc]

I’m sorry that you feel this way ...

...and I’m sorry that it continues to upset you ...but your reply is worth it’s weight in gold to other sufferers .

...as it draws great attention to the difficulties that can ensue from Thyroid Removal .

It’s important that we see the situation and consequences clearly before going down this very Final route.

There are options to better health with Graves than destruction .

Best of Luck to you

Luv mx🌹

[Meanbeannyc in reply to madge1979]

I never went into remission on MMI after 11 years.

[Fruitandnutcase in reply to Meanbeannyc]

That’s just awful to hear I’m so sorry on your behalf. You have all my sympathy and I hope eventually you will find an answer and feel better.

[twinkiegal]

I also have had Graves for about 8 years, maybe 9, I've lost count. Eye puffiness seems to run in my family, as does thyroid disease. My mom had her thyroid destroyed when she was a toddler (she was never told why) and both my grandfather on one side and my grandmother on the other had Graves. None of us had thyroid eye disease but we all have puffy eyes with deep eye wells. No one else had them, just those of us with Graves disease. It drove me crazy. So every couple years I get eye fillers. I live in the US and it's very easy to find a dermatologist or plastic surgeon that does them. They have been well worth it. The first year I did it, it lasted about 3 years, the 2nd about 2 years and then I just had them done again a couple months ago. Maybe look in to those? I have never wanted to get RAI or a TT because it seems like it tends to bring on a separate set of problems. I'm only going to do it as a last resort.

[Eyes-wide-shut]

Dear EmmaLouD79

Have you seen and ophthalmologist about your eyes? And have you heard of Graves eye disease, or TED? Please do not have RAI until you are absolutely sure you do not have TED, which will me made 100x worse by RAI. I speak from personal experience and from research which now does not recommend RAI where there is also TED. The thyroid eye charitable trust has an excellent information sheet tedct.org.uk/. As well as lots of other information. You may need treatment for TED if you have it and that will help your eyes.

The recommended alternative to RAI if you have TED is surgery. I know that too is a very big decision.

I wish you well 🙏

[pennyannie]

Hello EmmaLou and welcome to the forum :

As you already are having issues with your eyes I certainly would not suggest RAI treatment as this treatment is known to cause, or exacerbate any eye issues you may have, as that is what has happened to me.

RAI is one of three options that should be on the table for you to choose from and there should be open discussion about all the treatment options and the possible side effects in relation to Graves Disease.

RAI is promoted by the NHS as the first best option but this may not be in your best interests. It is a quick, painless treatment, an O/P appointment and a discharge back out into primary care, and the cheapest option,

A thyroidectomy is a " cleaner " more precise treatment but still invasive, and drastic action.

The choice between either RAI or surgery is like being between a rock and a hard place, as the offer is to drink a poison or have your throat sit open - neither option nice, but for an autoimmune disease - please think this through.

RAI is a toxic substance that you take either as a drink or in tablet form.

It slowly burns out your thyroid in situ, and ultimately, over time, renders you hypothyroid.

I read primary hypothyroidism caused by RAI treatment is more " challenging " to treat.

The poison is also taken up, to a lesser extent, by other glands and organs within the body.

RAI is known to trash your core strength vitamins and minerals :

RAI can induce symptoms similar to fibromyalgia :

RAI can induce symptoms similar to Sjogren's Syndrome :

RAI does not stop Graves Disease antibodies circulating in your body :

Graves is an autoimmune disease and as such, it's for life, there is no cure.

I had RAI in 2005 and now manage lingering Graves, thyroid eye disease and hypothyroid and it is far more " challenging " than when I was taking Carbimazole at diagnosis in 2003/4.

Your thyroid is the victim in all this and not the cause as the cause is your immune system going haywire and attacking your body. The disease is considered life threatening and scary because the thyroid is the engine of your body, and imagine a car without an engine.

Your thyroid is responsible for all your bodily parts, your physical, mental, emotional, psychological and spiritual wellbeing, your inner central heating system and your metabolism,

I have been very unwell, and that's how I found this amazing forum as the NHS had no answers for me - I now am around 3 years into building my health back and am having to buy my own thyroid hormone replacement as currently the NHS do not, routinely, prescribe anything other than Levothyroxine for hypothyroidism. Sadly, this doesn't necessarily restore a persons health to an acceptable level, especially those with an AI thyroid disease and those who have lost the gland due to surgery or RAI thyroid ablation.

If your only issues are slight, puffy eyes, please, please, do not think that RAI will rectify this issue. If I were you I would stay on the AT medication long term as this way, you keep your options open, and you will be monitored and cared for more thoroughly through a specialist and not left in primary care with a yearly inadequate blood test and anti depressants if you do not feel Levothyroxine works well for you.

Please do your research - Elaine Moore has Graves and been through RAI and I just wish information, this forum, and the Thyroid uk website, the charity who support this amazing forum were available when I first found myself dealing with insomnia, dry gritty eyes and exhaustion back in 2003 struggling to understand what Graves was, and how it could affect me, and what I could do to improve things for myself.

[Meanbeannyc in reply to pennyannie]

Honestly. The surgery part was the easiest part. Getting medicated optimally is the hardest

[pennyannie in reply to Meanbeannyc]

Hey there :

Yes, I had no issues until 8 years after drinking down this toxic poison when I guess my thyroid finally gave up spilling out the rotten contents into my blood stream and then finding the best treatment options other than then that prescribe by the NHS.

[asiatic]

You say your levels fluctuate. Have you considered that you may not be on the correct dose of ATM. I have Graves and TED and if I go even slightly hypo my eyes become puffy. I am on low dose long term block and replace which minimises fluctuations. If you post any blood results you have people could comment.

[Fruitandnutcase]

You’ve had some great advice on here from other people. I’m in remission from Graves. Various endos I saw throughout my block and replace treatment said that should I relapse I would have RAI.

I kept telling them I did not want that. In the end I was discharged, went to see my own GO and asked if they could force me to have RAI - no. Could the hospital refuse to treat me me if I refused RAI - again no. So I went back home and worked on my diet, keeping my vitamins and minerals well up within their ranges. I went totally gluten free eventually when I developed inflammatory arthritis which is yet another autoimmune condition.

I wouldn’t have RAI. I chose not to because I became hypo during my treatment and that wasn’t nice - different to being hyper but just as unpleasant. I felt that giving patients RAI just gets rid of them from the hospital but you are then at the mercy of your GP who may or most likely may not be able to treat and keep you feeling well. Once your thyroid has gone - it’s gone forever.

I’d say if you are having any sort of problems with your eyes then avoid RAI. It might be worth seeing an eye specialist but if you have been told your eyes are ok that might be difficult. Do your eyes feel dry too? Have you tried putting in artificial tears - get a good preservative free one such as HycoSan or Theolose Duo. Use it regularly throughout the day - you can’t overdose no matter how often you put them in. That might make your eyes feel more comfortable and reduce the puffiness on the other hand it could ‘just’ be fluid retention Is your general health good apart from the Graves - it might be worth checking that out too.

[Buddy195 Administrator]

I agree wIth all members who caution RAI with an active eye problem. I know my TED symptoms flare when undermedicated with Levo. My eye swelling gets me down so I can totally relate. TEDct have been really useful & given me name of TED specialist ophthalmologist in my area ( who I’m seeing in 2 weeks). Are you taking selenium? This is very important. Like Fruitsndnutcase, I also recommended using HycoSan as often as you need to to aid dry eye. I’ve also had some benefit from lutein & zeazanthin (Eye Complex 7 on Amazon).

[Gingernut44]

Don’t do it, I’ve made some pretty bad mistakes in my life but having RAI has got to be one of the worst. I was naive when I thought the NHS Endo was pushing me to have it, thinking it was for my benefit - I know differently now. I was pushed straight back to primary care and my GP is worse than useless. I haven’t been well since

[Hillwoman]

Normally, I hesitate to comment on posts like this one, because I don't have hyperthyroidism. But I've been a member of the forum for quite a few years now, and I'm horrified by the many, many accounts I've read of the lack of aftercare following RAI or TT. So I agree with all the others here who have counselled great caution: listen to them, and don't let yourself be pushed or coerced into irreversible treatment options.

pennyannie mentioned above that hypothyroidism following RAI or TT is considered more challenging to treat. Actually, this also applies to end-stage Hashimoto's, when years of autoimmune attack on the thyroid gland cause it to atrophy, and we end up functionally athyroidal. Athyroidal patients lack the physiological fine control of thyroid hormone function in the target tissues throughout the body. This is indeed very challenging to treat effectively, and it requires T3 for either part of, or the whole treatment. As you may know, it is now extremely difficult to get a T3 prescription on the NHS.

[Lora7again in reply to Hillwoman]

I have read about other women struggling in the US as well as here after they had RAI or their thyroid removed. Elaine Moore's site is based there and is full of useful information and she helped me a lot in the beginning. One of the first things my Endocrinologist suggested was that I had RAI or my thyroid removed which I decided against. Why would a NHS Endocrinologist suggest this when he probably knows I wouldn't have been given T3? It would not have got rid of my Graves' either because it is a life long condition. He didn't even mention about going into remission and I found out about that on Elaine's site. I am so glad I walked out of his clinic when he offered me counseling for feeling so ill.

[EmmaLouD79]

Thank you all for replying to my query on RAI. I think I definitely need to do some more research but realize now that my consultant has been asking me for years to have this treatment. I see now that this was probably to get me off his outpatients list as I've been on it for years and he does bring it up every time. Naively, I've not really thought my puffy eyes could have something to do with my Graves until recently and your comments have really made me think that I should maybe ask to be referred to a ophthalmologist and have them check them over. My eyes are not dry but they do twitch a lot and have the puffiness underneath. I've also noticed that my eyesight has become bad when reading things close up. I've been checked by an optician and they haven't picked up any issues but given me a prescription for glasses if needed. I'll take all your comments on board and will try and get my blood results back to see if anyone can offer further advice. I don't take selenium and so not sure if that would help so I will look into it.

Thank all so much. xx

[Fruitandnutcase in reply to EmmaLouD79]

I would definitely get the prescription made up and wear the glasses and see if that makes a difference to your eyes. They very well might improve things although they probably won’t reduce the puffiness. Are they for reading only or for distance too?

When my Graves was active my eyes felt terrible - they were never puffy though - just very tired, very dry, I couldn’t read for long because the muscles felt very weak, my vision in general used to become blurred even though I used to look up from my book at regular intervals and I used to get double vision - vertical double vision, I used to see an after image when there was any writing on the television.

It was all difficult to live with but I’ve pretty much gone back then normal now apart from the very dry eyes but I’ve also got inflammatory arthritis so it could be connected to that too.

[humanbean in reply to EmmaLouD79]

My eyes are not dry but they do twitch a lot

That could be caused by low magnesium. It's an extremely common problem, not just in people with thyroid problems. Low magnesium is also implicated in cramp, muscle spasms, and benign fasciculations. If you don't know what that last one is search for the phrase on Youtube. (It isn't rude).

For some more info on cramp and twitching, this reply to another post may be of interest :

healthunlocked.com/thyroidu...

[cazmania7 in reply to EmmaLouD79]

Do you wear contacts? I had dry eyes with contacts and glasses fixed that. But hyper and hypo I have puffy eyes and everyone always says gosh you look tired

[Brambles03]

I got RAI (not given any choice in the matter) after getting Graves while pregnant with my son 23 years ago and I would NOT advise it. Most definitely not advise it. Latest Endo I seen said he would not have advised it. Never been well since.

[cazmania7]

I had Graves and felt fine. Puffy eyes also. Had RAI and became unwell and hypo nine months later.

Five years later and am still unwell. I deeply regret RAI.