Ive just been reading this wonderful piece on the Hypothyroid Mom website. Its had me in floods of tears hence the inclusion of the picture of my wonderful cross Jack Russell - Leah, who is sat right next to me, very concerned that her mum is crying.
The piece is Lorraine Cleavers story. I only became aware of Lorraine Cleaver in the last few days when I saw the minutes of the recent Scottish Parliament Petition meeting with the wonderful Dr Midgely. ( posted on the T3 action group facebook page )
Hers a link to the minutes of the meeting. sorry if they've already been posted. Ive not been able to be on the forum much lately, which I will explained shortly.
Her story has had me in floods of tears because of how much I identify with it. Symptoms and diagnosis differ. But what certainly doesn't differ is the anger that is left after a life robbed due to the scandalously poor treatment us hypos receive. I was diagnosed at 18 now very nearly 48 and only recently realised Ive been mislead all these years. 'Its not your thyroid its your head'. Ive been robbed of 30 years of my life, 30 yeas of having depression, feeling I must be a weak person to be like this. 30 years of no self confidence, no energy and feeling its my fault I cant loose weight. Over 20 years of taking pro plus to be able to go to work, due to constant fatigue. In addition to feeling thick due to brain fog and the slowness of my brain and poor memory. And it goes on and I know all too familiar a story to pretty much everyone on here.
From very early on in my journey of discovery, Ive felt very strongly that I need to reach the other people who don't know what we know, that thyroid treatment is all wrong. It tears me apart in the knowledge that many thousands are living the ignorant and difficult life I did before discovering the truth and self medicating with T3.
I appreciate the resources that are this fabulous forum and the wonderful efforts of Thyroid UK for our cause. Equally for the efforts of TPAUK, Facebook groups and the Scottish Parliament Petition all striving to change the status quo.
But for me I just have a burning passion and like Lorraine an anger I can't ignore.
I wasn't going to out this this early, as it is very early days, but I have put together a plan for a campaign which I intent to push forward with. I currently have a small number of people on board, as it is still really at the formulation stage. I'm supposed to be writing our mission statement right now. The aim is to put our issue prominently in the public domain, so in essence an advertising campaign, but also to put increasing pressure on the people that decide keeping us ill is OK. I strongly feel the need to shout this from the roof tops until either things change or I take my last breath, which ever comes first.
If this strikes a chord with you, you are pretty well informed, passionate about this subject and have a bit of time to spare. I would love to hear from you.
Hope you enjoy the Lorraine Cleaver piece, as I did with tears in my eyes
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Kitti1
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Kitti's link is probably suffering from the same problem I've had with links on HU (because HU buggers about with them so they can monitor which links we click on, I suspect).
May I ask - would either of you possibly be interested in a little template letter writing ? I cant think of many with better knowledge. I understand if you'd rather not for what ever reason.
She is THE most wonderful dog, I cant tell you how much I love her. She is literally my shadow, she is so devoted to me. I have 3 dogs my first born Lily is a border terrier age 11, then Leah age 9 - 3/4s Jack Russell 1/4 poodle, then Barney ( Lilys son ) age 6. Love them all to bits
Kitti1, I believe there are so many people with similar feeling, burning passion and anger , but they do not know how to express their feelings. Those are the people we should try to reach and find.
With such a passion and devotion we can turn this fight into real discussion where we are not ignored as middle aged hypochondriac menopausal cows.
I love your attitude, maybe because I have the same attitude and burning feeling (not indigestion) to make things right.
Like I have said before this is my health, your health, our health and we have more rights than medical companies and doctors keeping us unwell.
Justiina who are you calling middle aged hypochondriac menopausal cows!!! You for got 'Depressed'. LOL
I have the passion! Lets fight the good fight! Pick up the baton from all those amazing Dr's who have sacrificed their lives and careers, to give us the ammunition we need. We cannot allow their efforts to be wasted.
Social Media has the advantages of numbers....
We do have the right to better treatment. We have put up with substandard medical treatment for far too long. For our kids sakes, and ours. We have to try
We are the 'evidence' that the NHS spokespeople keep saying does not exist. They may refuse to acknowledge us but if we all band together how can they say we don't exist? We are the proof that T4 does not work for all. We are the living proof that T3 works. If there is enough of us willing to get involved, to stand up and fight, they have to see us....
I am happy to get behind anything that changes the current situation with all things thyroid. As soon as something is definite and (prefarably) about to go live I will 100% be behind it.
I have offered to help on other ideas but nothing seems to happen.
I worry that there is not very much time left to get the thousands of voices heard. I hope it is not too late and wish something had been done already that we could have all got behind.
Some 'hope' of feeling like you are helping right an injustice would be lovely.
I have, and do, suffer very much through Drs not listening, and or getting angry, if I say I believe it is my thyroid underlying health decline. What I mean is they do not adequately manage my thyroid!
After 25 yrs I suffered acute ill health 2.5 years ago. Too many Drs, consultants later, New, and more diagnosis, of other autoimmune disease.... yet, I have never been referred, to see endocrinologist, even when I tearfully requested! GP looked at my neck and said no, not needed!
Stupid me! That article, very, very much, a picture, and story, of what we go through! I relate totally!! Why didn't I go private!!!! But as Lorraine Cleaver said, it is the shame of healthcare providers and the system.
Well, enough said, I had to fight my own corner too. Having sourced a London specialist team for another autoimmune disease, through my own endeavour, I finally got listened to. I asked can you please check thyroid antibodies? They listened, they not only did blood test. Yes, found antibodies. But, in sending me for ultrasound of saliva glands, found thyroid atrophy, shrivelled into fibrous mass. I asked for copies of results, as no app till August. Took copies to GP last friday. GP refused to change dose of levothyroxine, saying tsh and ft4 results good. Banging the ball of her pen on tsh, she said, 'You are treated correctly'.
On Monday I just happened to have my 6 month hospital appointment. I handed same results over to a rheumatologist. He immediately told me, you are over medicated levothyroxine, go GP get prescription changed. Furthermore, he has sent me for another blood test as ? he thinks thyroid crises may be cause of positive ANA test. I am hopeful we can eventually drop one diagnosis!!!
None of the above will surprise many, if anyone, here. I phoned a different GP Tuesday, at my usual practice. Prescription was altered after I told GP about results from london, and what rheumatologist had said. I also informed her I have an app booked in July, with a specialist in thyroid and nutritional health, privately. I said, as GP refused change dose Friday, I may as well wait and see what specialist says? Reply? No, because new dose will have some time to work, before you see specialist.
When prescription was collected, an envelope was attached with my latest blood results for specialist, and a note saying my meds had been reduced!!! Laugh???? Or, cry??? Call me cynical now, but really, is GP covering her back now? To be honest, I don't really care what she says, does, thinks, anymore...
After 30 years, same GP, I have no hesitation in changing my GP practice next week. I got forms to fill in from another practice. I hope it will be a really great change in my favour. However, I will no longer put up and shut up....
I think Lorraine is fantastic. When I get well I will also do all I can to bring much needed, long awaited change in how thyroid patients are treated... we deserve better!!!
Thanks for post. Dog is lovely!!!!! I want one of those!
webar4780 Your story like so many others, is awful. I too had 30 + years of none, or mistreatment, doubt I have any thyroid left, and definitely cannot convert. Hence I am lucky to be still getting T3 as on t3 only. And the very reason why we have to stand up and do something.
Well done for changing your Dr, I do hope that your new one will be better. We do deserve better, especially as so many of us have had ours lives blighted by this condition and the knock on effects. So many people have lost relationships, jobs and some even lives, because the medical fraternity stick their heads in the sand!
Perhaps this may make a few people sit up. I can't offer time. What I have is precious and as many people your post has struck a chord with will be aware that that's because as a fellow hypo sufferer, going through a period of intense workload due to the warm weather here in the South, I have to guard my spoons carefully.
I can offer you financial support in your quest to do something. And we are on the cusp of seeing T3 disappear from the medic's armoury without a whimper. Thousands of women will suffer and many are already doing so. I am already providing support to Thyroid organisations including TUK but NOTHING IS HAPPENING. Nothing.
Oh, except that we are being invited to write slogans for a Thyroid Awareness week which by some quirky chin out FUBAR is set to be at a different time to the International Thyroid Awareness week which has come and gone. The minute you have a dedicated account, do send me details and I will make a donation. Hell what harm can it do? I've given money to other thyroid charities and nothing has happened so why shouldn't you and your passion have some. I can proofread like a demon too but I have to have the time and that's in short supply for me personally at the moment; I'm so sorry.
I imagine that steviecat is good and angry about something similar but I can't see what it is because I will not connect with social media to the extent that his post requires. Bear in mind Stevie that many of us ( no not you GG, I'm aware ) choose not to do so either.
I urge anyone else who has a passion similar to mine and Kitti's to find an alternative way of taking some heed of their passion, or watching with their hands on their @rses as nothing continues to happen.
i'll answer properly soon, just sat having orgasms listening to Chic at Glastonbury ! The first album I ever bought at the age of 10 C'est Chic Dam I good taste for a ten year old LOVE CHIC !
OOH Yeah ! Ive got sweat on my brow and a smile on my face bigger than any Cheshire cats ! That was some of the best Glasto Ive ever seen, n that includes Boncee - Beyoncé ! Dam that was good Buzzin ! A big manc buzzin ! lol
Forgot to say this, I find it bizarre that in modern world we still debate about proper thyroid treatment. It feels weird in the world where man has landed to moon, decades ago.
I find it unbelievable that vitamins are considered humbug even though just decades ago deficiency to vitamins caused horrible illnesses and eventually death.
I find it unbelievable and patronising that we are victims of numbers, mathematics, statistics and money. We are victims of vindictive endos who want funding for their clinics, healthy patients means less money.
We are victims of politics , we are victims of power play.
I find it unbelievable that in modern world we are victims of ridiculous situation where doctors are divided, attacking each other. Those who have passion to practice medicine, passion to help and get true satisfaction to see happy healthy patients takes bullets for us, they lose their livelihoods for us, they are hunted and I have to ask is it really 2017 or did we go back in time, is this Salem? Is this crusade?
I find it unbelievable medical community accept the number how much needed to treated is 7 for antidepressants, so seven people need to take ad's for one to benefit and see nothing wrong with that? Who cares about those 6 people. Just like a poor patient who isn't well on thyroxine should be sentenced for life in misery. That's just right.
I find it unbelievable , no this I believe that because thyroid sufferers are mostly women we are considered hysterical and hypochondriac, it's 2017. Where do you think the word hysterectomy comes from? The time when they figured that removing ovaries and uterus cure hysteria. Still the word exist. Women are still considered the weakest link, the fragile unstable creature. We who carry a baby and give a birth are considered weak and crazy. I find it so unbelievable it's believable.
We have been shamed for having periods, it's disgusting, it's shameful event, it's dirty. It's the sin pouring out of our tortured souls.
This thyroid debate is just a next episode of this never ending sad and pathetic saga.
We women have no voice in this battle. It includes other autoimmune diseases as well. So many women I know who have been laughed out from doctors , been told it's just ageing, or women stuff to have symptoms and in the end it turns out to be RA or something that has progressed.
I find it unbelievable and disheartening that this is like freak show and we are the freaks.
I find it utterly disgusting that we are fed lies, and we are treated like village idiots.
My heart is broken , it's shattered in thousand pieces. I had the firm believe in modern world our best would be priority. Our health no matter what disease would ne priority. I really thought it would be normal , reasonable and common sense to seek best possible treatment for each illnesses as that would benefit the greater good. I find it unbelievable that medical community, medical companies and doctors only do what's best for them today, not thinking about tomorrow and the people to be born in the future.
I pity them. They refuse to renew and take the hit that would come if all new inventions and treatments would be used for greater good.
I really thought this would be my world too. World where I would matter.
I didn't want to end up being one of those people who end up having nothing else to do but write on forums how unfair life is. And here I am. My days are full of endless research and supporting other people.
I didn't want this. I don't want this. But this is what I got and the fire burning inside me is growing. If I have to do this then I must do this properly.
Ugh. Now I have spoken. I think . I am woman I am allowed to change my opinion tomorrow
Justiina That was ........incredible, words fail me. Not only have you an incredibly deep insight into our situation, but your ability to verbalise it is breath taking . Serious respect to a much valued sister. Thank you
Well done Kitti1 and Justina. I am not sure what I can offer but include me in the list of the interested. I find these days that with studying to get to the next stage and actually living a bit, and resting, the days go by very quickly now. But I agree the tales on here of misdiagnosis and negligent management are getting way too frequent. And the number of years to get a diagnosis doesn't seem to have come down at all. My OH is now asking for warnings before I sign in as he knows that I will get very angry after checking the days posts.
I think that we need to be very clever and media savvy to have the impact that we hope for. As Rapunzel says if we can't even coordinate our awareness week we are certainly missing a trick. I started off with a CFS/ME diagnosis and even this group of largely bed-based folks have managed to raise awareness with a TED talk and media campaign by a wonderful woman, together with the millions missing campaign. I actually have articles and real items to share with people whether they want to be interested or not, at least my circle are used to listening to TED talks.
I do understand - I'm so angry myself!!! I had health issues from a kid, stunted growth, very bad from 14 and not once did they do any blood tests until I was 21 and in such a dire state, I was unable to speak, and unconscious for 20 hours of the day. Excuse was when the results finally came back the worst they've ever seen, "it's not expected in someone so young"!!!!! My bad health continued for other reasons, although conscious lol until I was 33 when I finally figured it out for myself - I lost basically nearly 25 years of the most important years and these were the years that you learn your own identity so it's hard now to believe in yourself. I lost nearly all my life stuck in bed, in pain and although I am better now, am still patching up the last pieces with a body that just has had too much damage in all those years to ever really function properly.
The very very worst of it was like you, that throughout all those years, docs said I was depressed. My stubborn side said no and refused the meds but the other tired side repeatedly told myself that it was all my own fault and all in my head. On top of that, I've had family members and friends just think I was lazy or a hypochondriac and even lost relationships over it - although only bothered about one of those lol - Family still have no idea how hard it is to get the energy up for just the basics. Even if docs simply said they didn't know, at least I would have searched for myself somehow but half of me believed it was in my head. I get so angry at them, that if I see docs in public out and about, I have to try really hard not to approach them and say something real bad, lets just hope I never bump into them when a little tipsy lol. This is why I try not to think about it but I don't suppose it will ever go away unless I do something?
Count me in. I'm relatively new to the forum but can help with admin.. I'm not an expert on Hypothyroidism but have experience of being told the symptoms are all in my head, and what a dangerous place the internet is for self diagnosis, so am dealing with it all myself. Let me know how I can help.
I am happy to help if I can. I was diagnosed with an underactive thyroid in Jan 2017. ( I've not been to work for the last 3 months due to extreme fatigue ). I've had to fight my GP every step of the way. My TSH dropped to 1 on Levothyroxine and I was therefore considered fixed! She shrugged and asked what I thought was wrong with me as I was an absolute mess! Luckily - thanks to these forums and me desperately researching I was able to tell her. She eventually agreed to test for antibodies but I had to pay to see a private Dr ( my NHS appointment is next month due to a 4 month waiting list). It's been confirmed I'm not converting so am now treating my low levels of B12 and Vitamin D and have also started a trial of T3. (At a cost of £280 to me). If it works I will have to source abroad. Finally a light at the end of the tunnel but I am horrified that I have had to basically diagnose and treat myself. ( and pay!) I've always been a massive advocate of the NHS but this is so disappointing. Surely Thyroid UK ( who I have just joined) should be progressing these issues?
Hi Kitti1 please keep me in mind for helping - It would be a pleasure as I too am appalled at the numbers of tragic stories & those who dont know yet 😢
Count me in too ! I'd be very willing to help in whatever way I can. I feel the anger and its creating rifts between me and friends / family as they don't quite get it. I become ever more extreme in my arguments, talking about medical conspiracies and ageist, sexist parameters defining drug research priorities. The reaction is increasingly 'calm down, you're reading too much hyperbole on the internet'.....
There is so much information and so many case studies, that it should be possible to put a coherent, informative and well targeted campaign together. Let's do it !
Wantie though a sad state, it's reassuring that you too have that going on with friends and family. People look at me as though I've grown another head and I've realised they see me now as a 'born again' type - it's more thsn utterly frustrating so decided to button my lip, though that's a bloomin big ask 😁. But these are sensible educated people popping statins, anti Ds, iron just above range and some still on 50mcg Levo after 2 years and refuting what i tell them, the latter not even knowing what T3 or T4 is never mind frees and then suggesting perhaps that I'm over medicated, and to add to that has a hypo mother and a sister whom she never thought to ask should she see the doc as has all the signs of hypo - they'd rather believe what the quacks say. 1 is even a paramedic and another a teacher and another a consultant in the FE ed sector- they won't tolerate a word uttered against the establishment. They all state how well I look, which sort of doesn't totally help. I just hope that I've planted a seed and in time they'll see how misguided their thinking is.
Kitti1 i I would love to have been able to offer service to do something to help, but am only just starting to feel normal again, and still a way to go yet. Was smiling last night at yoir posts, went to ELO on sat and paid for it yesterday. On a good day I think I can move heaven and earth, but that only lasts at best an hour or 2.
I will support any action in any way I can to help. I'm sad that there is no news from TUK about where things of the last few months are at. I'm disappointed that no one in the media has taken much of an interest - all those TV progs, Mps etc etc. But it's great that those who saw TMIAD are coming to the forum, and seeking out support and help to DIY.
My cynical head thinks when no hypo patients are going to GPs or endos, cos they self treat, then eventually perhaps someone will wonder what they are doing and then start to listen.
Sorry for the rant here but as Rapunzel says it's FUBAR.
Hi kitti , Thankyou so much for your post . I have suffered 25 years With hashimoto disease and have been back and forward to the doctors with no effect . I am now going to be a first time glamma ! Which I am so so excited about . Until I realised my health , I want to run around and play with my grandchild like normal people , not lay in bed with extreme exhaustion . So I have started to gather information and tackle this disease head on . I am reading everything I can and am trying to get well on T3 and supplements . I am logging everything I do and I am going to fight to get my life back . I would really like to start a uk petition as I am furious that we have all been fobbed off by doctors over cost of medication , and doctors that quite frankly are in the wrong career . I had to give up work due to this mis-diagnosed illness , but only after working hard since I was 13 so I have paid my fair share of national insurance into the system . Yet I see drug users who have never worked get all the help they need without question so their funding is fine , where as normal law abiding hard working people are being told it's all in your head !!!!!! Well perhaps if we all convert to hard drugs we would get the help we need with no questions . I am so angry with this it keeps me up all night researching what I can do . If we can't get the funding for the treatment we have only one alternative buy it from an unreliable source , which will end up costing the NHS huge amounts in treating us for self diagnosing . It's disgusting that we have lost our life's so far with this and they think it's fine to push us into misery and heartbreak , not only for us but our family's .
For those reading this thread but not aware Kitti1 has launched the campaign ITT (Improve Thyroid Treatment) and you can help to make a noise by signing the petition.
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Scottish Parliament Petition Tuesday 5th February 2013
Thyroid Petition Debate at Scottish Parliament on Tuesday 5 Feb (tomorrow!)
