Hello my fellow warriors and thanks for all the interest in the petition.
Firstly, we are kicking ourselves for the things we didn't say. The problem leading to that was, prior to today we were allowed to submit further evidence to support our argument. This we did, a comprehensive selection of current clinical papers and research. However, a few days ago, the clerk telephoned me to say that as this petition already was of a rather technical medical nature, it would simply overwhelm the members and may detract from the core message. He strongly advised leaving it out. My feeling was, it was unfair of us to then quote extensively from papers they didn't have in front of them but he said these papers could be examined in further evidence sessions which he believed likey to happen.
Anyhoo, Sandra and I sat for hours lastnight in our hotel trying to think of ways to say all this, minus the technical stuff. We managed it, but it sounded crappola. It was dry, lacked impact and personality and we ripped it up this morning, banking on getting a result today and the chance to submit the further evidence then. And so it worked. The members have agreed to set up a working group to look deeper in to the issues. What impressed me hugely was the comment from msp Jackson Carlaw. When the convener suggested writing to, among others, the RCP and GMC, Mr Carlaw said it seemed pointless writing to the very people who we complain of, as their stance is unmovable and hence the problem.
So, we have hope. They will be writing to Thyroid Uk to ask for the research they hold and also contacting the writers of papers we linked to, as far afield as Sweden and America and as local as Yorkshire. You have no idea how nerve wracking it is when you know your brain is apt to empty for whole swathes of time. I named Dr Skinner and the situation with the GMC and was told it was best not to name any more names. Still, it had to be said.
Hope we didn't let you down too badly, it was our first attempt at anything like this but won't be our last. xxxxxxxx
I interpret that as saying by this time tomorrow (6th February 2013) the video of the committee meeting will be available and should be on the first link above. And will be there for a month.
You guys are doing wonderful work for us all.Thank you so much.I'm sure you said all the right things!
You were amazing and, honestly, your nerves did not show AT ALL! I, too, was extremely impressed by Jackson Garlaw! What an insightful man! Louise and I were jumping up and down (well Louise was mentally as she's done her back in!) at various points.
Yes, a huge, huge, thank you - you are so brave to do this! Lyn x
Thank you so much for your intensely hard preparation work and presentation of the petition on behalf of all those suffering people out there. You have all been very brave. Thank you so much.
Thank you soo much for representing us, you are stars,
greatly appreciated
love to you all
xxxx
Thankyou each and every one of you! It made all the difference knowing you were all behind us, rooting for us. I really hope and pray this leads somewhere and I get the chance to say what was left out. We deserve this people xx
I must speak for the first time since I found this site about 2 mths ago... Im in the process of changing my meds from T4 only to T3 and did the same thing 5yrs ago with the same endo and after one attempt he said there was no difference in me taking T3 and put me back on T4 which I have been on for the pas 28 yrs with years of suffering many symptoms and severe depression lasting years and everything getting so much worse I was sent to my present endo 5yrs ago and its just been a complete waste of time until I went 2mths ago asking to get a second opinion and spoke to a woman doctor initially telling her all I had learned on this site about hypothyroidism and after a while she brought in my original endo who, after telling him how I felt and that I wanted to try T3 again, he unwittingly agreed to try it again but he was adamant that it wasnt going to work and it was my complicated depression that was causing all my symptoms, which I have for many years felt there was more to my illness than depression.
Anyway, sorry for rambling but this news about the petition you have worked so hard for, really has given me so much hope, when none was ever to be found in any doctors surgery as I was always made to believe it must be my long term depressive state that I was suffering from and only Thyroxene was given for an underractive thyroid as it should be converting to T3 as previous tests had proved... over my dead body!...Im determined now to get to the bottom of my very debilitating illness, which has cost me my job and my confidence aswell as having no social life as always feeling too tired, but never late at night...as I should do!
Just want to thank you immensely for all your dedication to your fellow sufferers.I hope the outcome will be a positive one for all concerned. Well done!!
Thank you so much for giving all of us who are suffering, and who will no doubt suffer in the future some hope, it can has to change and people like you ladies will make it happen!
Thank you so much for doing this. I will be watching the video once it is available. I sent a link to the background to your petition to my doctor. He is very helpful but although he has tried very hard he cannot get anyone to do a T3 test for me. As I live in Scotland this may well change, all because of your efforts, courage and determination. Thank you again and again.
Unfortunately I live in Angus, way up the East Coast. I get too tired these days to travel distances! I watched the video and both of you were so professional in what you said. I was so proud of you both and I hope that you are proud of yourselves as well. I have high hopes as the MSP's seemed to listen to what was being said.
Winston Churchill spoke many words of wisdom and here are just a few.
"If you have an important point to make, don't try to be subtle or clever. Use the pile driver. Hit the point once. Then come back and hit it again. Then hit it a third time; a tremendous whack."
and
"The truth is incontrovertible. Malice may attack it and ignorance may deride it, but in the end, there it is."
Thank you for both for your incredible achievements. The walls of Jericho came down as did the Berlin wall and this one will too.
and of course he had his 'black dog' moments classed as 'depression'
slept 3 hours a night
and was a bit tubby, and suffered from post traumatic stress (various wars)
but was one of the greatest British heroes of our time, saving us from a Nazi fascist state, but and was outvoted out of office after, and died when I was six, with full honours of state.
Nevertheless, I wonder what made him so strong.
hugs Jane x
• in reply to
I was asked to do a talk at my GP surgery to some medical students -about hypothyroidism!! One of them told me that Winston Churchill did suffer from hypothyroidism.
Wow - amazing stuff lala - Thank you SO much for doing this. xxxx
Aw shucks guys Such lovely comments. We are just so very proud to be Scottish. It's the gift the parliament gave, of allowing us to be heard, however briefly. I'm sure that the not being heard is making our health worse. I am just so baffled that this situation is still going on, in 21st century medicine. But maybe there's a chink of light shining now.
Wish I was Scottish - I think that there might be an Elliott clan tartan out there some where. Went to my first Burn's night 2 weeks ago xx
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My husband is Scottish and my brother in law in Glasgow has had a thyroidectomy and is just beginning on thyroxine, having been taken OFF T3 because he has finished RAI treatment!!! I am watching him closely.I will show him the video! xx
La la had to comment, didnt no you was scottish, my friend, i cried listening to the vidio, it gave me hope and encouragment. you are both truly legends.
I cannot imagine going through what you have been through. If you are needing more ammunitioln to debate I was thinking of this. If I still had symptoms, but my blood tests were within range, they should be compelled to allow me to get to the TOP of range (or bottom of range for TSH) before they have the right to deny increasing any dosage. It may not work but it points out the deliberate manipulation to keep the patient symptomatic.
Dear Sandra and Lorraine, I just watched most of the video. I felt very moved watching you both and hearing your stories...and very proud that you have had the stamina and courage to do this. An awesome achievement. Your campaigning is sooo necessary, and I feel very grateful to you for doing this. I am so very surprised that you feel you may have let us down!!!! Oh! The opposite couldn't be more true! You are warriors in our cause. And great to put a face to the names. Thank you, a wonderful contribution for the case for change. And such a powerful thing to do, such a contradiction to all the years you (and all the rest of us) have spent banging heads on brick walls. Much love from the south of england! xx
excellent presentation,your famlieys and friends must be very proud of you,as are we,thankyou so very much for letting our voices be heard.big hugs all round.
You were both totally fantastic - and yes, it made me proud of Scotland's Parliament - just across town from me. If I'd known about this you would have been more than welcome to stay with me. Thank you both so very much.
Watched the video and am full of admiration - I was in tears at one point as there were so many similarities in our stories. Thank you both so much - there are far too many of us suffering needlessly. Thanks.
You did brillantly.No delays in answering the questions from the msps.I thought it was funny how the msp said twice has it not been done in other countries I ddon"t know if they wanted that to compare or to get praised for the first country to do something.I am from scotland but i am english.I have just had a change to my annual test that it was high in the t.s.h of 4.4 and to get a chck again in two months which is mid march.Thanks to you and Sandra for being brave and facing the battle head on.You are stars.x
Only just seen this. If I had seen it sooner I would of replied earlier. I admire you all such courage. Thank you for speaking out for all of us that sufferer.
I would love to send a letter but I just don't know what to write.
Thankyou Kezzerb. There will be time to write later. About mid March the Scottish Parliament Petitions Committee site will be open for comments. Maybe you will want to write something then. I will let you know nearer the time and include the website link. x
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