Campaign for Thyroid Transplants

We believe that thyroid transplants are necessary, possible and feasible.


We want to work towards improved quality of life for thyroid-less patients who may suffer from health problems including chronic fatigue, depression and joint problems.


By coming together we make sure that we are not isolated or ignored, that we can have an impact on our care, and the medical profession can be helped to understand our needs.


We've done quite a bit  research on the subject of thyroid transplants - about the possibility of a thyroid transplant and about the difficulties of living without a thryoid. You can find that here.


We recently found groundbreaking news of a transplanted thyroid gland being used as part of a voice box transplant. We  are encouraged that the medical authorities are willing to transplant voice boxes in this way to help people regain their speech, for “better quality of life” rather than for life-saving reasons.


There is also the very exciting news that research into voicebox and thyroid transplants using stem cells will begin in 2013. In theory a thyroid transplant should be much less complex and using stem cells would mean that there would be less need for immunosupressant drugs.

However at the moment it seems there are no plans to develop thyroid transplants for actual thyroid-less patients, despite numerous accounts of patient suffering.The current treatment for those without a thyroid is to prescribe the artificial hormone drug thyroxine.


Factory made synthetic medication cannot replicate the actions of a normal thyroid gland. A thyroid gland produces hormones in response to the body’s needs – a drug can keep thyroid levels constant but does not allow them to fluctuate in this natural way.


Thyroxine keeps thyroid-less  patients alive but some remain in poor health. We've read patients’ stories of suffering ill health after a thyroidectomy and it seems that a thyroidectomy can come with side effects such as:


  • chronic fatigue
  • depression
  • anxiety
  • memory loss
  • mood swings
  • weight gain or loss
  • joint pain
  • arthritic conditions
  • loss of bone density
  • breathing difficulties
There's more information about a survey into the health problems suffered by people who have had their thyroid removed here.


There appears to be a contradiction at present between what the medical establishment believes about thyroidectomy and what patients say their experience is.


There is a large body of anecdotal evidence to be found on the internet. We particularly like this piece in Dear Thyroid by a patient who is also passionate about thyroid transplants.

How can this organisation help?
  1. It will make the media and medical establishment more aware of the problems of thyroidless  patients.
  2. It will also provide a connection to those many specialists who listen and have the patient’s interest truly at heart and help them  make positive changes for thyroid care in the future.
  3. It will advocate for research into thyroid transplants. 


We can only do this with the support of readers who suffer with thyroid problems or want thyroid care to move forward. If you  feel the same as us, if you want to be heard and want thyroid care to move forward into the twenty-first century where it belongs, please help us by volunteering, by filling out survey, or by leaving comments on the site. We're also working on a petition. 

22 comments:

  1. i was born without a thyroid, its been a life of hell mood swings confusion blood tests heart problems just literally any symptoms that you can think of to do with thyroxine, i have no thyroid tissue at all, its hell and i dont see how it could be innapropriate to reasearch it because people like me would take any chance we could get, im only sixteen still going through changes and still its hell the amount of depression and not understanding whats going on in my body, im sick of it and i cant wait for a complete cure ,x

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    1. Hello Juste

      Sorry for the delay - my reply seems to have gone missing.

      Thanks for your support. I'm really sorry to hear you're having such a tough time. Hang on in there, try to focus on hobbies and friends rather than what's going on inside your body. It will get easier to cope with as time goes on.

      Could we use your story to help us in our campaign?

      Thanks

      Brian

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  2. if transplants are possible, the battle has taken far too long. i am tired of the fight but if there is hope i will continue my 31 year battle.

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  3. We believe that there is hope. Could you help us by filling out our survey which is here. http://www.surveymonkey.com/s/QSRT9JY
    If you are able it would be great if you could help. If you'd like to volunteer please drop us a line letting us know some of your skills.
    Thanks
    Brian

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  4. I had my thyroid killed with radiation about three years ago. I had an over active gland(3x normal). Now I have Graves' disease that comes and goes. Only one eye seems to be enlarging . That sucks because when its bad and my brain can't compensate I get double vision. I am so tired of taking the hormone that can't be the same as Mother Nature once provided

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  5. I also started learning about chakras. The root chakra is associated with the thyroid gland . It deals with expression, emotion and other things. It dawned on my that my ability to express myself has indeed suffered as a result of a dead thyroid . And what happens if we have a zombie apocalypse and we can't get synthetic thyroid hormone? I would love to get a transplant.

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  6. Hello!

    I just found this site and was wondering if you have any recent info on thyroid transplant?

    My thyroid was destroyed in 2008 by radioactive iodine. I was foolish enough to go along with the doctors and only recently found out there are more natural ways to deal with overactive thyroid. If there is a possibility for a transplant I think I would like that.

    And my concern is also like Ken Alderson, what IF we can't get the synthetic thyroid hormone any longer due to what is going on? I've read about what we could do, but really, trying to acquire pigs thyroids and desiccating them will be difficult if the S.H.T.F. in this country.

    Any information will be greatly appreciated. Thank you.

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  7. I was told I had thyroid cancer. My doctor cut out my thyroid. A year later I am 35 pounds heavier. My face tingles. A lot of my hair has fallen out. I have deep wrinkles in my face. And my skin all over is not tight like it once was before surgery. My muscles hurt and cramp. Also, I get muscle spasms in my legs. I had a serve anxiety attack and ended up quitting a job I loved. I was shock that I had an anxiety attack. . I am a very hyper person always on the go. I skate board with my boys and don’t like to sit still. Now I hurt after skate boarding and get out of breathe. With all the transplants doctors do today it got me wondering why can't they do thyroid transplant. What happens if there is a national crisis and not one can get their medicine? I have to take snythroid it cost a dollar a pill. The cheaper version causes me to have bad spasms. Who knew the thyroid was so important. It was not explained to me what would happened. Have you noticed the alarming numbers of people who are having their thyroids removed? What is going on? Anyone who I hear talking about having theirs removed I tell them don’t do it. My doctor has changed my medicine from 150 to 100 to 123 to 112. I feel like a lab rat. The doctor who removed my thyroid did not make me take a radioactive iodine pill after the surgery which he said I would have to. That is what made me curious to call and get a copy of my lab report. It turns out it was not cancer. My report just said “undetermined”. Is there anyone who has had a thyroid transplant? I am 45 and want to live an active life. Does it get worse with time? Thank you and please share with others.

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    1. Hello, I also had my thyroid removed about 7 years ago. they removed a parathyroid gland and while in there noticed the thyroid looked abnormal. The surgeon removed half of it for biopsy and had to go back in 30 days later for the rest of it. they did kill off any remainin thryoid with radio active iodine. It was all very scary and unpleasant. I have tried to be up beat about it all but I do worry about availabilty of medication. I was cut off of my thyroid supply for three months. the pharmacy and other professionals were so casual about it but I felt like I was walking razors edge I felt my heart was going to give out it was terifying to live like that and If a transplant could prevent me from ever having to go through it again I am totally on board.

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  8. I had my thyroid removed 7 years ago because they said I had nodules on my thyroid and they couldn't determine if the were cancerous even after a needle biopsy where they stuck three large needles in my neck. I had my thyroid removed and it turns out the nodules were not cancerous. They hae me on synthroid and I am depressed all of the time. I don't want to get out of bed in the mornings. Now I am diagnosed with osteoporosis and I do also have arthritis. I would love to have a thyroid transplant. I hope it happens in my lifetime. If I would had to do all over again I would have never had my thyroid removed.

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  9. I am praying for healing for you all. I believe it. My son at age 12 had to have radiation to his sinus and neck area, which stop his thyroid from functioning. They could have given him potassium iodine to protect his thyroid but they did not suggest that at the time. Now he is 20 years old and still on the levoxyl pills. .80 mm a day. I would like to see them give transplants for the thyroid. Even if people never had radiation, they still need to do what they can to improve on this research. I am with use all the way with this. Grace and Peace

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  10. I was diagnosed with hyperthyroidism when I was 5 and struggled with mood swings, weight gain, weight loss, heart arythmia with a resting heart rate of 120, depression, low blood pressure and a goiter of an impressive size according to my doctors. When I was 14 I was treated with radioactive iodine because my doctors became concerned that my heart health was fast degenerating. I'm 21 now and taking levothyroxine, I still struggle with heart problems, depression and mood swings. Despite eating healthy and exercising daily I'm still toe-ing the line of obesity, and am having issues with early on-set arthritis. I'm constantly reading about new discoveries on hormones in the body messed up by poor thyroid health which in turn affects the whole body. The long-term affects of this appear to be pretty serious and I believe there needs to be more research into transplants that could help people with thyroid diseases have a healthier outlook on life. If I had known then that I would still be having the same issues with my health after making my thyroid non-functioning I would have refused the radioactive iodine treatment.

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  11. Thank you for all your stories. We're sorry to hear about all your difficulties.

    Please do fill in our survey as it helps us collect evidence.

    If you want to get involved let us know.

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  12. I had a thyroidectomy in 2010 because of a 1.2 cm papillary thyroid cancer nodule. I wanted to have just the nodule out but my surgeon assured me if there was one malignant nodule then the whole thyroid was riddled with cancer. Wrong! It turned out the cancer was encapsulated and the rest of my thyroid was perfect. He thought the pathology report would make me happy, but it made me angry! Now I have to live without my thyroid and it's difficult. I can only hope there will be 3D printed thyroid transplants in the near future.

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  13. I haven't had a throidectomy, but I do have an underactive thyroid known as hashimoto disease. I take 100mg of Oroxine daily. I get lots of heart papitations, shortness of breath, arthritic joints, loss of hair and have put on weight. This is very depressing.

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    1. I also have underactive thyroid and have the same symptoms u do. The doctor gave me 40mg celexa for anxiety. But its not helping as well now. Also vitamins D and B12 are very low so I take vitamins for it. I'm sorry you are having all these symptoms. I find slow deep breathing helps with heart palipitations and shortness of breath.

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  14. I am 32 and was diagnosed witness hyperthyroidism in 2001 after having my son. Doctor gave me atenelol for a few months then room me off of it saying my hormone levels were back to normal. In 2003, after I had my daughter, I was diagnosed with hypothyroidism. I am now on levothyroxine 200mcg daily. I dieted in 2011 and lost 50 pounds. From November 2012 to April 2013 I gained 35 pounds back. I take celexa for anxiety. I have lost strength in my left arm and both legs. My knees hurt and crinkle loudly. My vitamins D and B12 are both extremely low so I take 2000 IU of D and take 2 dissolvable tabs of B12 daily. My energy is low. Libido low almost non existant. Suffer mood swings, insomnia and crying spells also panic attacks. I would love to be a candidate for a transplant. There are probably millions of people suffering. My dads thyroid is dead from chemo and radiation after throat cancer. Moms thyroid was high so they zapped it with radiation. Now its low. Something has to be done about this epidemic

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  15. Hello. I'm Lorna and live in the UK. I had my thyroid removed in January 2011 after many attempts to calm my pregnancy induced overactive thyroid with Carbimazole. I have since gained 4 stone, have terrible memory loss and major mood swings to the point where I often regret having my thyroid removed. I know I was very overactive with my levels being over 100. I don't know what that meant, just that the docs were surprised I was still alive. I miss the buzz I felt and the fact I could do all the housework and still have loads of energy left. Now I feel tired all the time even though the docs say my levels are fine. I am a carer to my husband when I am not working, I work full time and have 2 young boys to look after too (one who is partially deaf and has some learning problems due to contracting meningitis). I haven't anyone who can help with the washing and tidying. I feel like I am 90, not the 29 year old that I am. Sorry to go on, no one I speak to seems to understand.

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  17. Thank for all your stories. We know how tough it is, that's why we're doing this.

    You can help by filling in our petition here.

    http://www.thepetitionsite.com/567/252/887/campaign-for-a-thyroid-transplant/

    We're always looking for volunteers, so if you'd like to help in other ways please contact us.

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  18. Hello. I agree with so many of you. I did not have my thyroid removed; however, it does not function at all due to a radioactive iodine treatment. I had the treatment when I was 21 yrs. old after suffering with hyperthyroidism that I developed after taking diet pills. They still just diagnosed me with Grave's Disease and when I developed allergic reactions to the hyperthyroid medications, they simply "burned" my thyroid out with radiation. Since then, I can honestly say I have NEVER felt the same. I do a lot of research, and I feel like we are neglected due to the fact that the US makes so much money on thyroid replacement drugs. I also read an article on thyroid.about.com that said that hypothyroidism could make us more susceptible to lung cancer. This means that transplants would not only be enhancing for quality of life, but they could be life saving as well.

    Dionne

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  19. Num1lady of the summer yahoo30 October 2013 09:52

    I broke my neck in 1999 and I am very blessed to be able to move today. The plates in my neck, I believe have destroyed my thyroid. A compromise I am willing to make for the ability to walk. I do have terrible problems with keeping my thyroid levels "within range". I have gained 62lbs in the last 7 years and am passed miserable. I would love to have a thyroid transplate or even have a piece of a thyroid implanted into my abdomen as studies have showed that a piece of thyroid tissue put into the stomach of some animals have produces thyroxine levels of normal levels. So if you need a subject to step up and take the explorations I am ready.

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