Graves Disease - RAI 2005 - long term consequences.

[pennyannie]

Hi there, thank you in advance for reading the following :-

Why would I experience symptoms of RAI some eight years post treatment ?

For the last 4 years I became very unwell with no saliva and a dry and burning mouth. My dentist suggested Sjogrens and I was referred in 2015. This came back negative but low ferritin flagged. In 2016 referred to gastroenterology - I had had both procedures before prior to RAI. The endoscopy was aborted, I had no saliva with which to swallow the scope. The trolley was swung around and entry gained into my bottom. The incessant pain I was experiencing in my mouth was also at the other end, in my bottom! I fainted with the pain, waking up with a saline drip in one arm and a heart monitor attached to the other. The procedure continued - negative for cancer ?

2017 I found this site and started my learning curve. I managed a dose increase back up to 125 Levothyroxine and a referral to endocrinology - I have been refused a trial of T3 as now my TSH is suppressed but I feel so much better and am getting stronger. My saliva has now improved and my dentist has managed to fit a bridge in my bottom front jaw. I seem to be at an impasse with my doctor and have been referred back to her by the endo - a decision which I am trying to have reconsidered.

I guess my question is, is this a common issue ? Did my thyroid die some 8 years after RAI and dump it's contents into my system, including toxic RAI remnants ?

I believe I have been dosed and monitored on TSH blood reads - I read that some people need to kept suppressed - could this be a contributing factor ? I have Elaine Moore's book Graves Disease - A Practical Guide - there is much to understand, and sadly, in the UK we seem not to have any aftercare in this speciality. Professor Toft's Counterblast only seems to confirm what I am currently up against and I am trying to consider what I do next ? I simply would like to know what has happened and why ? And what can I do to prevent this happening again ?

Any thoughts, and yes, I do believe self medication is an option as all is failing ?

Thank you all for being there,

[greygoose]

Well, the first thing you need to do is get hold of your blood test results, for as far back as you can. If you live in the UK, it is your legal right to have copies. Just ask at the surgery. Then, post them here, with the ranges.

[pennyannie in reply to greygoose]

Yes, thank you, I have a letter from my doctor dated 10th May in which she offers me 1 blood test result from the hospital letter from 2006 ( 1 year after RAI thyroid ablation ) which details me having at hospital discharge a T3 @5.8 and T4 @ 24 with a suppressed TSH of 0.014 :

I started with this doctor in 2007 as up until then stayed on at the hospital as an out patient as I wasn't settled in my living arrangements.

She also has bulked together TSH's from 2009 -2017 showing levels of 0.3 - 12.5 stating that they didn't seem to make any difference to my symptoms.

She also states that I had a trial of T3 in June 2007 and that she hasn't been dismissive but if I wish I can see another doctor in the practise. She is the head lead, with thyroid and women's health being her special interest areas!!

To say I feel angry is a massive understatement. I have replied asking that all my bloods tests and dosage levels be supplied to me, there isn't any computer access availability to me, other than repeats prescriptions.

Why would anyone write such a letter detailing one blood test from over 10 years ago and supply TSH readings which as I understand it are not a reliable read for dosage as my thyroid has been disabled and my HPT axis is now broken.

I sent her Professor Tofts counterblast, highlighting the relevant points ???

I really feel I'm totally up against a wall, for asking, what has happened to me ?

I can't keep "touching wood" I'm feeling a bit better, day by day !!!!

[greygoose in reply to pennyannie]

Well, to be honest, it doesn't even sound like Grave's. And if they didn't do the relative antibody tests, then they had no business diagnosing Grave's. Why would they trial you on T3 if you had Grave's? I think it more likely that you had Hashi's.

[pennyannie in reply to greygoose]

From reading on here I too have thought, initially did I even have Graves ?

It was diagnosed 3 months after being physically stood over and verbally abused by a work colleague. I employed this person as my assistant manager, I had no back up from my company and there were no witnesses. He told me he had made sure of this !!! I read Graves can come on through a " shock to the system " ??

Either way, I'm drank RAI and now have a diagnosis of Graves, hypothyroidism and Thyroid eye disease. I read that after RAI thyroid ablation some people do better on a combination of T3 + T4 and you did recommend this to me last year.

I think we have crossed wires somewhere here ?

[greygoose in reply to pennyannie]

Probably. My memory is rotten. And I don't always have time to go through people's past posts. But, if you do have Grave's Eye Disease, then I guess you did have Grave's. But, I can't for the life of me imagine why they trialled you on T3.

Yes, people who've had RAI often do do better on T4+T3. But, then, so do most people.

Or do you mean they trialled you on T3 SINCE the RAI? That would make more sense. lol Ah, but, as the general rule, they have no idea how to conduct these trials properly! Do you have the details?

[pennyannie in reply to greygoose]

Yes, I had RAI in 2005. I stayed as an O/p for a couple of years as I wasn't settled in my living arrangements. I registered with this doctor in late 2006 and then it would appear that in June 2007 my doctor suggested a trial of T3 - at that point in time I was oblivious of Thyroid UK and was told to buy a pill cutter and try this little tablet.

It seems she also gave me a trial of HRT at some point in that year. Either way the trial made little difference to me, and it was stopped after a month. I have asked for full details of all medications and dose levels and am waiting a reply to my letter request. No worries, I'll update when I get full details - thank you GG xx

[greygoose in reply to pennyannie]

You're welcome.

[wendypartridge]

18 months post-RAI and i get very painful burning gums and mouth, i went to DR who said see the dentist, I don't see the point as I know it is related to either graves or the RAi treatment when my mouth is really painful and burning I cannot chew it is horrible. I have been referred back to the endo because i disagree with the doctor about T3, i think t3 plays a massive part in our health, if our t3 is low, we will not be well. I see no point in upping the t4 when I am not converting it into t3. I wish you luck in your battle, sorry i could not really help but I do think T3 can be the answer, I have read so much and learnt so much and all paths lead back to t3 . xxx

[pennyannie in reply to wendypartridge]

Hi there Wendy, Oh, well, I trump you ??? My burn is 8 years on ??

Yes, I am just soooo angry and feel I'm up against a firing squad for questioning the long term consequences of RAI-131 treatment. I had no saliva for about 18 months, incessant mouth pain, unbearable, and then to find it's up my anus as well ????

Nobody wants to know - Try gum and sour sucking sweets like what are suggested to people who have had cancer treatment on head/neck area - Please make sure you are taking all vitamins and minerals supplements - not eating properly will have " knock on problems " -all I could manage were soups and rice pudding out the fridge, cold soft stuff. There are prescription meds, that can ease the problem, orso I read, I was offered nothing except a throwaway line from my doctor suggesting I suck an ice cube ?????

xx