Hi two surveys looking for participants
Twitter link to where I saw it:
twitter.com/thyroidtrust/st...
This then links to a survey from british thyroid foundation on your experience with treatment of hyper thyroidism (past or present) with scientists from Newcastle University
btf-thyroid.org/news/take-p...
And also this one from Thyroid Federation International who are interested in patient experience of care
I've just done the hypo survey.
There is a section where you have to answer true/false questions and then they give you the correct answers.
These were the correct answers...
Have you attached something I can see a blank space?
The answers are clearly written by someone who doesn’t have hypo 🤦🏼♀️
Why are they only looking at TT and RAI when the third option of drug treatment is becoming more popular ? I think I will write to Newcastle and ask.
Hey there ;
I thought on the most recent survey via the BTF that it actually listed long term AT drugs as as the third option to either TT or RAI ???
It starts by saying there are three options and goes on to say they are comparing the TT and RAI options. As a patient on long term B and R I couldn't complete the survey. I just think it is a missed opportunity. When a patient is trying to decide which to choose they want to read good scientific evidence comparing the 3 options and there isn't any. The few outdated papers on eg. TT use remission as the yardstick for success and on this forum we read of many suffering with hypo symptoms afterwards which aren't addressed. As I said a missed opportunity to do some meaningful research.
Oh, ok then - back in 2003 at my very first hospital appointment I was told I was to have RAI the following year - and there was no discussions on the subject.
I was well on the AT drug Carbimazole and my symptoms mild, compared to what I now read on here ;
I have been more ill since RAI than before and now self medicate with NDT :
My QOL has reduced since treatment for Graves with iodine-131:
My worry is QOL won't be given enough emphasis when they consider long term outcomes. If ATM's were included along with TT and RAI they would probably compare favourably or even better. I think there is a mistaken belief that aftercare is simpler with definitive treatment.
Well yes, of course :
I read long term AT medication is the most expensive treatment option - with RAI being the cheapest :
I just feel the plan is to switch the patient from a so called " life threatening " health issue, which of course it can be for some people, to a " life limiting " health issue and then a discharge back out into primary care.
In primary care, from my experience there appears to be little knowledge and with the yearly thyroid blood test reduced to just a TSH blood , should you not be well the onus is put back onto the patient, and it's suggested you take anti depressants.
In primary care Levothyroxine is the only hormone replacement on the table ?
When will doctors and endocrinologists stand up to be counted ?
The medical professional take an oath to do no harm - and here we are being offered a drink of a toxic substance to burn out the thyroid. which is, in essence, the victim in all this, as the cause is our immune system going a bit haywire.
Similarly loosing your thyroid surgically, for an auto immune disease seems wrong, but at least, I think, maybe a cleaner option and more precise, in that the gland and it's contents removed.
Common sense then tells me, you replace like with like, if you can, and we can, but we do not ????
Sorry, I've gone on a bit - take good care - :
Working out cost is impossible. Too many variables. Long term ATM may not be forever. Many will achieve remission it just takes some longer than the 18 months suggested before definitive treatment. Also how do you factor in the cost of tablets for depression, high BP , high cholesterol etc necessary when doctors don't prescribe high enough doses of thyroid hormones.
Exactly - but all the merrier for Big Pharma's bottom line ???
I became seriously unwell around 8 years after RAI and found no help or understanding in the following couple of years going around various outpatient departments and referred to by my doctor as a conundrum.
I thought, maybe that Graves has come back that I was treated for in 2005 with RAI ?
I purchased Elaine Moore's first book, and learnt that Graves doesn't go away and all my current symptoms can happen in some Graves patients after RAI :
So I purchased a second copy of the book, as my doctor had mentioned years earlier that she hadn't cared for a Graves patient post RAI before. My doctor knew I was dyslexic and I innocently thought she would help me through this.
Needless to say, the book was declined as was my request for NDT and a trial of T3 :
Graves is a poorly understood and badly treated autoimmune disease and patients are mostly stuck between a rock and hard place : drink a poison or have your throat slit open - it's as barbaric as it reads - as these drastic treatments do not solve the issue and can only compound the patients health.
Completely agree with you there. It’s utterly badly thought through.
Very true that it’s put back on the patient. The tenacious ones will get somewhere over time but I feel passionately sympathetic to those who can’t. Like my mum. She just doesn’t have it in her to fight the system.
It's a crazy system :
I am now well enough to hold a conversation, challenge, and make my points clear and concisely to any medic you care to put in front of me :
But yes, I'm 2 years into self medicating with NDT and having to Do It For Myself as they wouldn't help me when ill, unable to say much without crying and loosing the plot, ending up in a heap nearly falling off the chair.
It’s so sad isn’t it. Makes me angry. I really must write a letter to someone useful 😂😂
Yes I think that " Graves Rage " very common and yes, write but who is useful ?
Thyroid uk has worked so hard launching a T3 petition - it was presented in the House of Commons by Sir Vince Cable and then kicked up to the House of Lords - and now what with Covid probably under a cushion or collecting dust somewhere.
When people are ill they look to their doctor in the first instance and not to a laptop nor an internet site to buy, hopefully, something to help them feel better.
I shall likely write to my MP, the health minister and some of the other parties’ health ministers. Going to see what the template letters are on thyroid trust. Want to ask for something tangible. Thinking even to ask them to look into where the Concordia / advanz pharma situation is in the first instance. That’s been going on YEARS.
I think Concordia are not around anymore - believe they faced charges in Canada and claimed the 5th amendment - but I could be wrong :
I think you'll find a lot of information on the Thyroid uk website :
5th Amendment was to the USA's constitution - so does not apply in Canada!
They renamed as Advanz.
advanzpharma.com/news/2018/...
Thank you :
Just reading up on it again, as I knew I was on shaky ground - the wheels within wheels of big business - I find it fascinating and disconcerting at the same time :
month or so ago there were a couple of previous posts on the subject of that hypothyroid survey. Some people contacted the authors , and there was a reply i think.can't find now , sorry, got brain fade.
Yes I think it’s wise to, and one of the surveys at least had space to comment.
here are the links to the previous posts on the same hypothyroidism survey, in case you wish to see others thoughts /responses on it... which were generally along the lines of 'We are Not amused'
healthunlocked.com/thyroidu...
healthunlocked.com/thyroidu...
Oh good. I’m really glad I wasn’t going mad when doing the survey and reassured there are many who are just as exasperated and responded. Thanks for sharing.
Afraid that I have given up responding to surveys where the design, the questions, the options, etc., all force me to lie or mislead.
One example (from the Hyperthyroid survey - just from reading through as I am NOT hyperthyroid!):
How long did you take ATD before your doctor suggested that you would need definitive treatment (i.e. RAI treatment or thyroid surgery)?
1-3 months
3-6 months
6-12 months
1-2 years
more than 2 years
I was not prescribed ATDs
How do you answer if your doctor discussed it before you were prescribed anything, or it was in the first week or two? Or even, before being diagnosed!
Please complete Patients' Survey on NICE draft guideline
ITT SURVEY - Have your say on the new NICE Guidelines 
