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MY THYROID STORY, by Ali Jagger
Hello. I am delighted to be able to share my story with you on Dear Thyroid® – the tale of how one person can really make a difference, speak out and hopefully change the views of the medical profession in their own small way – and how glad am I that I did! I have met some inspirational people along the way and it just shows what you can do when you feel passionately about something in life and want to make a change!!
Ten years ago I nearly died in A & E as a result of a misdiagnosed underactive thyroid gland and the resulting heavy periods I endured, which meant I was admitted by hospital emergency services having lost five out of my eight pints of blood. Over the next few days I had a blood transfusion and finally a diagnosis was found – hypothyroidism. By then I was 20 stone (280 pounds) and very, very poorly – over the previous year, I had been told by my GP to lose weight and exercise more. One time, when I was in his surgery complaining about yet more unexplained weight gain, he told me “You know you really aren’t doing yourself any favors looking like that!” – Charming! So, just by having an uneducated GP who thought I was overeating, I ended up in a very sorry state indeed.
Once diagnosed, I lived in a “thyroid fog” for a few more months as thyroxine was gradually introduced and increased to 250 mcgs. Even when on the highest dose, I knew I didn’t feel right and decided to see a private specialist – with the best will in the world, my new GP was sympathetic but each appointment with him only lasted a maximum of ten minutes – and I needed a good hour talking to someone who had studied this condition to make sure I wasn’t going mad!
I found Dr. Arthur, a consultant based in Liverpool, and went into his Saturday surgery armed with three sheets of A4 paper all typed up with my symptoms and concerns – I had no memory at all at this point! Everything I told him about he agreed with and reassured me that this was entirely normal for someone suffering from an underactive thyroid. He was the first person who told me I would get better, which made me cry with relief. Even though I was on thyroxine, I still couldn’t really concentrate or focus on tasks for too long. It was a half life at the best of times, plus I was still 20 stone (280 pounds) so moving around was tiring too. He told me to return to my new GP and ask to try T3 to complement the T4 I was taking “but you’ll have a fight on your hands” he told me!
I thought he was joking, but he wasn’t wrong – my GP told me I didn’t need T3 and my thyroid would convert T4 for me so off I went back to Dr. Arthur who told me to insist on a trial of this! Eventually the GP backed down and I was finally allowed to get my hands on T3. Two weeks after taking this, my step-mum told me “I think we’re getting Ali back”. My focus was returning and I was generally feeling more optimistic about the future.
Over the next few years I struggled to lose my thyroid weight at about a stone (14 pounds) a year – it was slow, tough progress and I often fell off the wagon and ate too much as when you’re 17 stone (238 pounds) losing half a stone (7 pounds) can often just feel like a drop in the ocean when the overall goal is so huge and you start thinking what’s the point!
I was a size 10 (US size 6) before I got ill, but I continued to try to stay focused and I used to promise myself that when I got back to my original weight I would write my story, sell it to a national newspaper and make sure people knew what had happened to me so it hopefully never happened again to anyone else! I knew from working in TV that newspapers love visuals and a dramatic “before” and “after” picture would be what would get me into print. So, nine years later – the day I got back to the weight I was before I fell ill – I got up at 5 am and wrote my story! Two newspapers were interested – The Guardian and the Daily Mail – but I went with the Mail, mainly because it had the greater readership. The goal was to get the message out to the maximum number of people. Then, on the day it went into the Mail, I went into overdrive calling TV stations asking if they’d like me on as a guest. I called the UK’s ITV1’s This Morning program and the producer who answered said “gosh, I’ve just been reading about you in the Daily Mail” … so I was booked there and then – cheeky but I was on a mission!
The experience on This Morning was great. I had been warned by the producer in advance that they didn’t want the item to sound like a witch hunt against GPs – damn, I thought. Anyway I agreed. However, I knew that the program was indeed live, so once I got my bottom on that sofa I could say what I wanted! But I need not have worried – as soon as I met their resident doctor Chris Steele in make-up, he told me “Ali, I’m going to come down on GPs really hard today as I feel so strongly about all this”. I was amazed and, true to his word, Dr. Chris did say on air that many GPs are wrongly focusing on blood test results rather than LISTENING to patients. I love that man! There were over 400 calls to the show straight after the interview and my appearance was repeated again only last Friday as so many viewers called in asking to see it again – amazing! Personally I got over 200 e-mails from viewers via my website and I tried over the next few months to personally speak to everyone who had got in touch.
Ali and Dr. Chris
Dr. Chris contacted me again a few weeks after the program saying “We’ve upset a lot of GPs by talking about all this – well tough!” I was really loving the fact that we were ruffling a few feathers in the medical profession on behalf of those still suffering.
Over the next few months, the e-mails continued to come in and I heard heart-breaking stories from people still being ignored by doctors or dismissed as over-eaters (like I was!) Two poor women had even had unnecessary hysterectomies (like I was threatened with and one poor girl was only 25!) I was careful not to give advice but just let people know what had worked for me and got me back to health. Sometimes people just wanted to talk to someone who had been there and I was happy to be that person – I always said I never wanted anyone to feel as desperately alone as I did during my darkest days!
Many people wanted to know how I had lost 10 stone (140 pounds) and yes, it was tough but I did start researching all about excellent nutrition and have spoken to many in the medical profession about this.
The following is taken from the World Health Organization, states that:
“Nutrition is the foundation for health and development. Better nutrition means stronger immune systems, more energy, less illness and better health for people of all ages.”
This really hit a nerve with me as personally, even up until recently, I still found I was getting very tired in the early evening and was often in bed by 8.30 pm. However, I recently discovered Herbalife nutrition products and I now have the energy and vitality levels I had 20 years ago – so they really work for me personally and enable me to continue the work I want to do, helping others get the diagnoses and treatment they deserve.
Finally I thought I would share with you an e-mail from Sarah who told me about her struggle getting the correct diagnosis from her GP just after my This Morning appearance and my suggestion to ask for a trial of T3:
“It was interesting to hear what my doc said last week, considering that only three or four months ago he dismissed my request to consider taking T3 as not necessary. I do hope that I will see some benefit from taking T3 at least on a trial basis. But (and there’s always a “but”) I might not gain much benefit as it seems that I actually have M.E.”
And yesterday I got an e-mail from the same lady:
“Well Ali – Here’s one success story as a direct result of your TV appearance and our subsequent correspondence. Following a good degree of improvement of my symptoms since taking a low dose of T3 – my GP has acknowledged the fact, agreed to update my ME (CFS) diagnosis as incorrect and doubled my T3 dose. Good times – thanks. I hope I’m one of very many to benefit from your campaign – fully restored health is finally within my grasp.”
It is stories like this that spur me on even more to fight for others who don’t yet have their energy back and make a difference. They in turn can do the same for others when they return to full health – and together we can make a difference!!
What a ride it has been – like a rollercoaster in fact, but I made the decision just to hang on and enjoy the ride! The joy has been the great people I have met along the way; yes unfortunately we do have a fight on our hands to be heard but it’s SO important never to give up! US thyroid guru Mary Shomon has asked me if I would like to be interviewed for her next book and I have now retrained as a Weight Loss and Wellness Coach, helping others with their weight loss, energy and vitality levels which I absolutely love – they do say what doesn’t kill you makes you stronger and I think that’s definitely true in my case!
To view Ali’s appearance on This Morning and read the Daily Mail article, as well as several other articles and Ali’s personal approaches to health and wellness, check out her website.
Tags: hypothyroid blog, hypothyroid bloggers, hypothyroid community, hypothyroid dangers, hypothyroid misdiagnoses, hypothyroid mistreatment, hypothyroid stories, hypothyroid success stories, hypothyroid support, hypothyroid weight gain, hypothyroidism nutrition, my thyroid story written by Ali Jagger, UK thyroid patient stories
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17 Responses to “MY THYROID STORY, by Ali Jagger”
Leave a Reply to Sarah Downing
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Dear Ali,
Wow! Wow! Wow! Good for you Ali! You have given me hope, I can praise your courage no more than that!
My name’s Robert and I live near Cambridge, England. I have hypothyroidism.
I have recently started a blog which covers my battle with hypothyroidism. Please check it out Ali. It is my last throw of the dice! Nearly all the feedback I have received mentions T3 and/or adrenal fatigue. I need to get more information and advice on this.
You know how it is when you do not know if you have the strength to fight any more battles as you feel you are not being listened to? That’s me!
Your story has inspired me to fight one more!
Good for you Ali!
Robert.
Ali,
I commend you on all you have done to fight for your rights as a patient and get the proper treatment that you deserve! I too, was undiagnosed for several years and suffered with heavy, seemingly never-ending periods. I ultimately had an endometrial ablation (the lining of my uterus was ‘burned’ off) to eliminate the bleeding. If I had been diagnosed with Hashimotos back then, I never would have had to have that procedure! So you see, the doctors here in the States are not much better, it seems, than they are elsewhere. As of right now, I am contemplating switching doctors (again) as I am still not satisfied with my current treatment. It is all so frustrating. Best of Luck to you and keep up the good work!
Ursula
Hi Hypoman/Robert;
So glad that you found inspiration from Ali’s story, that’s awesome.
We love that you have a blog, and that you’re writing about your disease – it’s so important. we have quite a few men in our thyroid community – and we need as many of you to bravely speak out about your condition, as you are doing.
We have lots of resources that you might find useful, Robert.
Please check out FLYING WITH BROKEN WINGS, a column about hypothyroidism, written by a thyroid patient, Sarah Downing. Here’s a link to her archives: http://dearthyroid.org/category/flying-with-broken-wings/
If you check out our DEAR THYROID LETTERS, you might also find a lot of resources and inspiration from each patient’s letter and from the comments. http://dearthyroid.org/?s=hypothyroid+letter
You might want to submit a Dear Thyroid letter of your own! http://dearthyroid.org/submissions/submission-guidelines-dear-thyroid-letters/
Finally – we’d love to add you to our thyroid bloggers blog roll: http://dearthyroid.org/resources/thyroid-bloggers/. If you’re interested, we spotlight a blog a month, we’d love to spotlight your blog.
We hope you’ll join us on Facebook (http://facebook.com/dearthyroid) and Twitter (http://twitter.com/dearthyroid)
Anything you need by way of support and resources, we’d love to help make sure you receive.
Katie
Little Bear, IT’S INCREDIBLY FRUSTRATING! So sorry that you have been through all that you have.
Do you need some resources to find a new doctor? As a just in case, here are some links that might help:
Mary Shomon’s Top Docs: http://www.thyroid-info.com/topdrs/
Thyroid Worldwide Database:
Dear Thyroid Patient rec’ docs: http://www.facebook.com/#!/group.php?gid=107843015904179&ref=ts http://dearthyroid.org/resources/patients-doctors/
Please keep us posted on how you are doing and feeling.
xo
Frustrating is really putting it mildly. I feel as though I am on a never ending roller coaster with no control and no way off!
Thank you for the info on doctors. I have checked out Mary Shomon’s Top Docs, will also check out your site as well. Do have one possible doc in mind, he is not endo or a thyroid specialist, but he DOES LISTEN! He is currently my sons doctor, I have met him several times and really like him a lot. Just need to find out if he is willing to take me on as a patient.
Will let you know how it goes.
You’re right – frustrating is putting it mildly. I do apologize if you felt marginalized in any way. It’s profoundly overwhelming and heartbreaking. I REALLY FEEL YOU.
I am so glad that you have a possible referral. Thank you so much for letting us know how it goes and keeping us in the loop.
Wishing you the very best, LB
Katie
Ali,
You rock! I am grateful for what you did for your fellow thy-sufferers.
But isn’t it sad that it always takes mass-publicity to get a point across? – We here often talk about the not so good doctors (and sometimes, as just recently, about the great and listening doctors), but getting yourself educated about your disease, and then take that knowledge and use it to educate your own doctors (at all levels – I am always amazed how many endorinologists [they’re supposed to be the experts in their field] are behind on the education curve.
Great personal story! Great personal success! … and very inspiring!
Thanks for sharing your story here.
HDinOregon
Little Bear,
Sometimes having a doctor who listens (even though he/she is not in the specialty you want or need) can be a great asset. Make that doc your friend, he/she might be able to open some doors for you with other physicians.
It is always a great way to introduce yourself to a new doctor by being able to say “Dr. So-and-So” recommended you highly as being a person who cares and listens. You see, doctors like their egos stroked too.
Good luck to you!
Sending healing thoughts your way!
HDinOregon
Ali – thank you so much for sharing your inspirational story, and I LOVE what you are doing to continue to help others.
Ali – Fabulous story! I went undiagnosed for years, even with a family history of hashimoto’s and having another autoimmune condition. I, like you, landed myself in hospital which was a Godsend. The doc on call ignored my perfect blood tests and started me on Armour Thyroid a combination t3/t4 medication available in the states. I felt a difference almost immediately and am on my way to getting back to my life. Thank goodness you and Dr. Chris for standing up for the truth and advocating for all of us. Sending healing thoughts to everybody! Kathleen
Katie, No need to apologize,I did not feel the least bit marginalized. I think what you have done here with this group is fantastic! It is so nice to be able to communicate with people who truly understand how you are feel and what you have to deal with in everyday life. Just to be able to ‘rant and rave’ and not be judged by it, is a comfort, sort of like a ‘home away from home’.
HD, thanks for the advice. I do think a doctor who listens would be a great asset. But I am afraid that those kind of doctors are few and far between. We shall see.
Best Wishes to all!
LB
Go Ali!
Hey Ali,
I am so glad that you friended me on Facebook and I got the opportunity to see just how much you have already done for UK thyroid patients. I admire your passion for advocacy and am so pleased that there is another person out there willing to fight for UK thyroid patients – they sure as hell need it! Dr Chris is indeed awesome – I was delighted about what he said on This Morning. If only every UK thyroid doc were that savvy. I was sad to hear that Dr Arthur is no longer practicing as a thyroid doc, but is now specialising in hair loss, but am very glad that he helped you.
Keep up the good work and hope to hear more from you in the future!
Love,
Sarah
You go Ali for us Brits that can’t get T3(cytomel)and are still fighting with the health care for some reform.
I was once asked by the BTA to go on TV. I was interviewed via phone by one of the editors who asked me certain questions which i answered honestly and added my own bit. I think they declined me because I was outspoken well I gave my view point on certain subjects and on watching the program back you could see it was all rehearsed and who has]d replaced me hardly said a word.
I would certainly go on a program and speak out about eh appalling treatment we thyroid suffers have to go through before we even get a glimmer of hope.
I Haven’t actually seen “This Morning” that you were on, so hope I can still view it, but good for you for speaking out and for everything you are doing now.
Lollyx
Hi everyone – thanks for all the comments and if anyone would like to have a chat eg. Robert and your fight for T3 please do give me a call. All my numbers and e-mail details are on: http://www.elitelifecoaching.org – I am here for anyone that wants support xxx
hi everyone i too suffered for years before being diagnosed with under active thyroid i have been on 150 mg for 12 years and now been told i need to reduce my meds down to 125 mg and i am having blood test tomorrow to see if i need to reduce it further ,,,my problem at the moment is i have had my period since begining of june i had 5 days break at the end of june and then started bleeding begining of july some days its a tiny bit other days it a lot the doctors have made me feel like i have got something very seriously wrong when i know deep down its my thyroid causing it not sure if further reductions in meds will stop the bleeding and return my periods to normal again ,, im just so fed up of it now and the doctors dont seem to understand the symptoms
thanks for reading
Deb Yardley
I would just like to thank everyone who has shared their stories, the good and the bad! It’s because of all the stories and advice i’ve encountered over the past month that has pushed me to do my OWN extensive research since being recently diagnosed with Hypothyroidism. I know exactly how the circus ring with Doctors can be since I’ve worked in the medical industry for 10 years and refused to run through hoops and have just random drugs pushed on me…. and so have taken this situation into my own hands with research and ordering my own CORRECT thyroid lab tests including testing for antibodies and an adrenal saliva test (my DR only did a basic test and had little info for me). I’m still waiting for the results so that i can understand what i am dealing with on a more specific level and doing research every day on the next steps to take once i know what my labs reveal. All of the information and stories i have encountered have been a huge source of comfort for me and lets me know that there is light at the end of this tunnel! I hate to hear how people have suffered for years with little info out there for them to go on…and I’m so beyond greatful to have such amazing stories and information to help me after just being so recently diagnosed (only had about 3months of bad symptoms) and will pray for you all to find a cure to your own thyroid issues as i hope to find mine as well!