Lugois iodine ( graves)

[birkie]

Hi everyone 🌹

Just doing a bit of research on graves thyrotoxicosis and the use of lugois iodine given before thyroidectomy, I had this solution 10mg 3 times a day via syringe with a small amount of water for around 6wks before surgery, my surgeon requested I attend the hospital twice a week to monitor my thyroid levels and when he was happy my levels were safe he would do my op as an emergency (2019) I know now but not at the time why he gave me the solution ( in affect it kills the thyroid preventing thyroid levels being produced and doing something to the blood flow, I totally lost my voice in the process and my throat felt like it was burning I took to sucking on an ice cube to elevate the feeling, I've now gone on to have problems with my parathyroid hormone levels and calcium levels, endo wrote saying I probably have primary hyperparathyroidism 🤷‍♀️ but that's gone to a dead end, but could oral iodine affect other areas of the throat 🤷‍♀️ I have read a paper that did a survey of graves patients who had radioiodine therapy RI.. And went on to develop parathyroid problems, I know I didn't have this therapy but it got me thinking in relation to oral iodine🤷‍♀️

[tattybogle]

was this given to get thyroid under control because you were unable to take Carbimazole /or PTU ?

Just thinking out loud , as don't know any of this for certain.... i'll be interested n what other answers you get... but :

Iodine (whether it's radioactive iodine , or just normal iodine) is absorbed by the thyroid tissue ... i don't think parathyroid glands absorb iodine do they ?

So i can't immediately see how Lugols would be able to affect them.

With RAI . presumably it's the radioactivity that affects 'other things' not the iodine that is used to transport the radioactivity into the thyroid.

[birkie in reply to tattybogle]

Hi🌹

Yes I tried both anti thyroid drugs but were unable to stomach them I vomited them bk, from sep 19th 2018 diagnosis of hyperthyroidism till January 2019 when I was rushed to hospital in thyroid storm ( my gp knew I was struggling with the anti thyroid medication but insisted I continue, his fault I ended up in thyroid crisis) the lovely doctor on my ward asked what my uptake scan showed I told him I've never had one or seen an endocrinologist, he got me the scan and the endo diagnosed graves thyrotoxicosis and told me the anti thyroid medication would never have worked as I was very thyrotoxic and my thyroid needed to be removed, hence the 6wks oral iodine 🤮 my T4 was 100, T3 39.6 TSH undetectable.. Just wondering what oral iodine does to other parts of the body.. If any 👍

[tattybogle in reply to birkie]

By the way Birkie .re your difficulty finding anyone who is prepared to re operate on your neck ... i wondered if you'd seen this post ? (Some of the posters had suggestions for private surgeons, as no one on NHS would deal with them) healthunlocked.com/thyroidu...

[birkie in reply to tattybogle]

HiYour quite right tattybogle in the re- operation of the neck area👍 my thyroid surgeon who I managed to see refused point blank to go bk in but plenty of people have had thyroidectomy and gone onto have parathyroidectmy quite successfully, quite a number of our members have done this, the only bugbear is if I wasn't having bad symptoms I really wouldn't bother but with passing kidney stones (last hospitalisation in June 2019 awful) passed one at home in feb 2021 with strong painkillers prescribed by gp had blood in urine, trips to the toilet especially through night, headache, bone pain and bone vibration, calcification in joints and heart, ostiopeania, I normally have constipation but due to going bk on T4 teva ( started with very loose bowels bad bowle pain I know it's the T4 but I'm only doing a 6 wk trial to call the doctor bluff as she says all the above symptoms are due to T3 teva) I think the kidney stones should be of relivence my creatinine and eGRF are nearly always out of range with one creatinine being 99 this year.

[bantam12 in reply to birkie]

I had a very experienced surgeon and he did warn me parathyroid op would likely be difficult and he was right ! There was so much scarring from thyroid op many years previously that he struggled to find the tumour and whole op took 4 hours !

[tattybogle in reply to birkie]

i get the distinct impression that if you want anybody to operate on your neck again you are going to have to pay someone to do it privately, assuming you can find someone who agrees you do have a parathyroid problem and is prepared to operate..... your parathyroid blood results are just not presenting clear enough evidence to convince the NHS it's worth the risk of further surgery.

I don't think convincing yourself you've found the cause of the problem will help with persuading anyone to consider parathyroid issues, if they can't see /don't accept the problem exists from your blood test results .

Sorry to be blunt .. but that's how it seems to me .

[Valarian in reply to birkie]

Water under the bridge now Birkie, but how much carbimazole were you on? 60mg/day is normally enough to stop thyroid production altogether, to the point where you would need to be prescribed levothyoxine as hormone replacement (the ‘block and replace’ approach). This is even the case for those with very high thyroid levels, but the problem is that those with very high thyroid levels before treatment are less likely to achieve remission, so even if your thyroid levels could be have been brought under control or temporarily blocked, the likelihood is that they would have shot up again when treatment was stopped.

You should definitely have been referred to an endo when diagnosed as hyperactive. In the UK Graves’ disease is usually diagnosed via thyroid antibody tests (TRAb or TSI) rather than uptake scans. However, in many Trusts, these need to be ordered by a specialist.

You may find this (US) article interesting re use of Luurgol’s Solution pre-operatively. ncbi.nlm.nih.gov/pmc/articl...

[birkie in reply to Valarian]

Hi❤️Unfortunately for me it took my surgery over 12 months to diagnose me, in that time my thyroid was overactive and went toxic I was in hospital in thyroid crisis, I had tried both anti thyroid meds but just kept vomiting them bk so obviously would not be working as they came up as they went down, I was on anti sickness tablets to but threw them bk also🤦‍♀️ in the end I was told no amount of thyroid meds would have helped, my thyroid antibodies were off the scale, that was found after I saw the endo and eventually had the uptake scan it took up in both lobes I lit up like a Christmas tree😢 then surgeon wouldn't operate on me as my levels were so high hence the oral iodine for 6wks...it was awful stuff I honestly thought I'd never get my voice bk.. Then diagnosed in 2020 with primary hyperparathiyroidism 🤦‍♀️ I was just looking in to the oral iodine as I never really understood why I was on it and just wondered if their were any links to primary hyperparathiyroidism 🤷‍♀️

[bantam12 in reply to tattybogle]

It’s given pre op to reduce vascularity.

[tattybogle in reply to bantam12]

oh right ,, so you don't bleed to death while the bloke operates ... that would seem like a good idea then

[bantam12 in reply to tattybogle]

Yep seems like a good idea 😉

[bantam12]

I was given the iodine before thyroid op, that was almost 50 years ago, I also had RAI about 20 years ago and had parathyroid tumours around 6 years ago.However my late husband also had hyperparathyroidism and he didn’t have any of the thyroid treatments so no connection there.

I think you may possibly be clutching at straws but who knows and what’s done is done so does it matter 🤷‍♀️

[birkie in reply to bantam12]

HiJust I read a recent paper on radioiodine therapy in connection with parathyroid problems, I know I didn't have this therapy (I had oral solution) and a percentage went on to develop parathyroid disease, as I've had parathyroid hormones out of range and calcium to.. I soupose I am grabbing at straws I just wondered if their was a connection, I was diagnosed in 2004 with early onset of primary hyperparathyroidism then discharged with one normal blood test, seems weird again in 2020 to be diagnosed with it again after oral iodine 6wks, then full thyroidectomy 🤷‍♀️

[Valarian in reply to birkie]

There are quite a few articles around on hyperparathyroidism post RAI, but all seem to be (like many things thyroid-related !) at the ‘needs more research’ stage. One article I saw suggested it might simply be that more cases get picked up because patients will still typically be under the care of an endocrinologist. However, if there is any effect it seems to be most likely down to the radioactive element (with the parathyroids being so close to the thyroid) rather than the iodine.

[birkie in reply to Valarian]

Hi❤️

Yeah their appears to be more on the radio active iodine, my high calcium was picked up on 2 of my thyroid blood tests, then did parathyroid hormones they were over range to.. Honestly Im sure theirs someone out their with a doll sticking pins in it..😆 Just can't catch a break, thought get this toxic thyroid removed and I'll be bk to normal... NO... 😢😢

[Valarian in reply to birkie]

With Graves’ disease, it’s pretty much a case of finding the least worst option. It isn’t as if you could have continued on antithyroids. The thing is, most of us understand there wil be pros and cons to every option, but getting an adequate explanation of them can be like drawing teeth.

[greygoose]

The parathyroids have nothing to do with the thyroid. It's just that they're situated just above the thyroid - bit like the adrenals are situated just above the kidneys, but have nothing to do with the kidneys.

I don't think the iodine kills the thyroid, it just stops it making so much hormone. It used to be used to treat hyperthyroidism before anti-thyroid drugs were invented.

[birkie in reply to greygoose]

Hi greygoose🌹

Yes that's why my surgeon put me on it as I was very toxic, he said no amount of anti thyroid medication would have helped me,.. so taking 6wk of oral iodine would not affect any other parts of the neck then?

[greygoose in reply to birkie]

Not as far as I know.

[Valarian in reply to greygoose]

‘I don't think the iodine kills the thyroid, it just stops it making so much hormone. It used to be used to treat hyperthyroidism before anti-thyroid drugs were invented.’

…that’s right. There seems to be a suggestion that there is a relatively small window where it will have that effect, and then it may lead to increased thyroid levels, but this is less of a problem when it’s being used in the short term pre-operatively. On the other hand, in Japan , it seems to have been used for longer term treatment too. ncbi.nlm.nih.gov/pmc/articl...

The joys of thyroid disease…so many questions where the answer seems to be ‘maybe’ !

[Digger0]

Good morning birkie. I was told that problems with the parathyroid and calcium levels are a common complication following surgery, so I opted for the RAI, and have had no problems. I know this does not help you.

[birkie in reply to Digger0]

Hi🌹Yes after my thyroidectomy ( may 2019)I was given calcichews one per day but after a blood test performed around 10 days later my endo rang telling me to come off them saying my calcium was OK, then in the June 2019 I developed another kidney stone rushed to hospital my calcium was way over range, the hospital arranged a kidney scan I'd passed the stone, the nurse at ambulatory care told me to inform my thyroid surgeon, I did but he said not to bother, then in 2020 my calcium was over range again so had PTH done twice both over range and endocrinologist said i now probably have primary hyperparathyroidism, still trying to get this sorted as endo as discharged me on one normal blood test.. Its a flipping nightmare as I feel so ill, and my surgery are playing about with my thyroid medication saying all my symptoms are down to it.. All my symptoms are of primary hyperparathyroidism but they just don't care🤦‍♀️🤦‍♀️

[Poniesrfun]

This is the foremost authority on hyperparathyroid parathyroid.com

See if you can glean the information you need to take back to your docs from this site.

Patti in AZ

[birkie in reply to Poniesrfun]

Hi❤️Been on it yes its a good site, I'm on hyperparathyroid UK Action 4 change,my bloods have been put on the site and members have confirmed I have this condition, but as it always seems with certain endocrinologist I got one normal blood test bk and he dismissed me so I'm fighting it.. 🥊