Kidney problems following RAI treatment

[Wilson123]

Hi I’m Pippa 51yrs old & was wandering if anybody has had any issues with their kidneys following radioactive iodine treatment? Well I’m in a bit of a pickle & just come out of hospital because of the above! My current TSH 100 & FT4 6.3 the main issue that I’m having is that because I’m so under active this is preventing all of my organs from working properly including my bladder & bowels! Any advice would be really helpful. Thank you

[TiggerMe Ambassador]

Hello and welcome aboard

You desperately need some thyroid hormone replacement as like you say nothing works without these at a decent level... what have they got you on? Have they referred you to Endo?

[Wilson123 in reply to TiggerMe]

Hi Tigger thanks for your reply I’m currently on 100mg Levothyroxin but my bloods results aren’t getting any better & my Nuclear Medicine/Thyroid consultant has never seen such a drastic change in results before! My thyroid levels were normal back in March & within 12wks I’m severely under active resulting in me being hospitalised.. I’ve been under the endocrine team since 2017 with Graves’ disease

[TiggerMe Ambassador in reply to Wilson123]

Wow that's a rollercoaster, do you have a fT3 result?

[Wilson123 in reply to TiggerMe]

That’s one way of putting it but my life has never been straight forward & I always seem to have the doctors baffled 😵‍💫 for some reason they didn’t test my ft3 do you think this is because of the thyroid ablation with the RAI ? I’ve never quite understood thyroid results..

[TiggerMe Ambassador in reply to Wilson123]

Shocking that they haven't checked your fT3 as this is the 'more active' hormone, I'm not sure how they can treat you properly if they don't also test fT3, with fT4 levels that low it should have automatically triggered a fT3 result by the lab?

I'm not up to speed on the Graves implications

[Wilson123 in reply to TiggerMe]

Thank you for your advice lovely I might ring my Endo nurse tomorrow & ask that question, however I don’t hold out much faith! It’s like they’ve passed the buck to the nuclear medicine guys now that they carried out the RAI 🤷‍♀️😵‍💫

[TiggerMe Ambassador in reply to Wilson123]

If they are being hopeless it's worth getting your own finger prick test from Monitor My Health so at least you know what is going on and can put the squeeze on them 🙃

For so many of us it is down to what we know rather than expecting them to have a clue

[radd]

Wilson123,

Welcome to our forum, how awful all this must be for you.

In healthy people the sodium/iodide symporter mediates iodine into thyroid follicular cells but it has also been found in the kidney, opening up a risk to people having RAI.

Once kidney is damaged, excretion of iodine is strongly impaired, exacerbated by your lack of thyroid hormone that also slows renal function.

Are they looking into treatment for you? What have they said?

[Wilson123 in reply to radd]

Thanks for your reply Radd yes I’m now on 100mg of Levothyroxin but my thyroid levels are getting worse instead of better & my nuclear medicine/thyroid consultant is stumped, which doesn’t give me much faith 🤦🏻‍♀️ I’ve got appointments lined up for nephrology, urology & I’ve got a scope of my bladder booked in also. I just don’t know what my prognosis or outcome will be & the scariest part of it all is that I don’t think the doctors know either?!

[radd in reply to Wilson123]

Wilson123,

This is all abit beyond me but if this were me I would concentrate on raising thyroid hormones as they will help reverse some of the kidney damage (to an extent).

Members are asking about FT3 levels because T3 is the active hormone, and having this result will give some indication how your Levo is being utilised. .

However, you appear to be having dreadful absorption issues so you could ask for some liquid Levo or have the dose raised much higher until levels start raising.

[Wilson123 in reply to radd]

I didn’t even knew you could get liquid Levo? I’ve only been on Levo for just over a week & have another blood test in 2weeks. Once I receive the blood form if it’s not requested FT3 levels I will ring the consultant & ask that question. Thank you so much for all your input & advice it’s very much appreciated 😊

[PurpleNails Administrator]

How do you take your levo? Away from food, supplements & other medications?

Have you had folate, ferritin, b12 & vitamin D tested? These need to be optimal to convert sufficient T4:T3.

You don’t seem to be absorbing levo, made worse by being very hypothyroid.

Have you had test for gluten issues? This is common with Graves autoimmune. When was Graves diagnosed? Were you taking antithyroid (PTU or carbimazole) prior to RAI?

[Wilson123 in reply to PurpleNails]

yes I take my Levo 30-60mins before food in the morning. I’m already on vitamin d capsules. I think I had ever blood test under the sun whilst in hospital & the only raised markers were obviously my TSH, FT4 & Creatinine which is 109, eGFR 51 & my CK which is 624! I also have ulcerative colitis so I may have been had a gluten test then but not sure? I’ve had Graves since 2017 following chemotherapy. Yes I was on Carbimazole prior to RAI.

[serenfach]

I would think your body is still reacting to the RAI - it takes a while to flush the iodine out of the body. A week of Levo is still to early - your body is crying out for it, but the Levo is not hitting the spot. T3 would as it is the active hormone. Lack of thyroid hormones slows everything down, including bowels, but when your levels begin to pick up, this will sort itself out.

You should not be left like this, ring the Endo secretary and ask if the Endo will prescribe T3 "as a short term measure" until your TSH comes down. Worth a try! Good luck!

[Wilson123 in reply to serenfach]

Thanks lovely my treatment is no longer with the Endo nurses it’s with the senior consultant from Nuclear Medicine & I asked this question about T3 but they only want to prescribe me Levo. I have another blood test in 2wks so they’re keeping a close eye on me now. I also have a scope booked in for my bladder? Along with an appointment to see the Nephrologist . Yes that’s what I was told about everything showing down so I’m trying to stay positive & hope that things start improving. It’s just very scary to think how much damage has been caused to my kidneys in such a short space of time 😞 thank you so much for your advice it’s been really helpful 😊

[arTistapple]

It’s something it seems ‘they’ don’t want to know about. Any iodine dyes etc can damage the kidneys. I have references for this as I have CKD and hypothyroidism. However I would imagine in your case the iodine levels would potentially be much higher.

ADMIN is there not something in the Guidelines to cover this? As it’s not my condition (and too much to understand there too) I really thought everyone having this procedure was put on both Levo and T3!!

[Wilson123 in reply to arTistapple]

I’m not sure if this is a daft question but is the radioactive ☢️ iodine capsule the same as iodine dye? Yes mine was a very large dose because I also had a multi nodular goiter. I’m just so confused now I haven’t a clue what’s going on 🥴

[arTistapple in reply to Wilson123]

I don’t think it’s a daft question at all.

I can’t actually answer that specifically BUT I have heard that if a nuclear attack is imminent ‘people’ are offered iodine tablets. This ‘protects’ the thyroid (for how long I have no idea) as it’s the most vulnerable part of the body, being that it utilises iodine to do its job. It’s where intake of iodine goes in the body. The idea being that iodine tablets prevent the radioactive material from entering the thyroid and destroying it. You have been given a radioactive iodine capsule to specifically destroy your thyroid just like a nuclear attack would do. The thyroid sucks this up as if it was iodine itself. However yours will be measured to just destroy the thyroid!

So it’s not the same. But the kidneys can be very sensitive, especially if they are already previously somehow damaged.

CKD go hand in hand for some hypothyroid patients. It’s part of our very complex metabolic homeostasis and dare I say often overlooked by doctors who should be connecting dots ……

[serenfach]

I was told not to worry about my creatinine levels until they went over 500. I usually run at around 120 (46-92), as I lost a kidney a few years back. If you see a slightly dusty one running about, please return it.

Your kidneys do and will recover, but it takes time. Drink as much as you can to flush the last bits of iodine out.

[Wilson123 in reply to serenfach]

Hahaha 🤣 I needed that much needed giggle thank you Serenfach 👍🏻 I just don’t know what to think anymore I’m just losing more & more faith in our doctors sadly! I’m just grateful for forums like this 😊 I’m wandering if all my kidney issues have just come about incidentally with my thyroid?! My beautiful mum was only born with 1 kidney & that too was damaged so she used to always be in hospital when I was growing up. I wander if there’s some genetics there regarding my kidneys? The lovely thing about that though is that she was told that she would never have children & hey presto here I am along with a twin brother 😊 he was the chunk weighing 5 pounds & I was just under 2 bags of sugar 😀 so yeah I was a miracle baby ❤️