Hi. I had hashimotos and papillary carcinoma. I had a TT in 2016. Y'all know it's no cake walk.
Now, my daughter, who just turned 17 had hashimotos and papillary carcinoma. She just had a TT. Can anyone out there tell me of a very young person my daughter can connect with that has had these issues. She cries daily. She had calcium complications after surgery. She can't attend school regularly right now. She having panic attacks. Is there a really young person out there she can talk too???????
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Itsjakefromstatefarm
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You and your daughter have been through a lot in the last few years. It must be a very stressful and frightening experience. I know from my own family experience with thyroid conditions.
I have not had any operations relating to my thyroid but was born with only a partial non working gland, so have been on medication all my life. I am now post menopause.
Anxiety is quite common with a thyroid condition, especially when the doses of medication is being adjusted. It can take time and anxiety and depression as well as extreme tiredness can set in. However, once on the right dose for each of you is found, you should lead a relatively normal life. Everyone's dose is different, depending on their needs.
Other conditions associated with thyroid conditions are, Vitamin D deficiency, B12 deficiency and both pernicious anaemia and iron anaemia, sometimes walk hand in hand with a under active thyroid. But again, you can lead a normal life.
I am far from young, but you are both not on your own. Always here for a chat.
I feel for your daughter I too lost my thyroid to pap cancer and from my own personal experience I grieved for everything I lost after my thyroidectomy I grieved for my lost health, my sanity, some of my hair, dealing with doctors who just don't understand the hormonal crisis I was in and just understanding this disease and I grieved because I had no one that understood my stress.
Your daughter already has the best person who actually gets what's she going though...You!
Itsjakefromstatefarm, We occasionally get posters on the forum asking about their young family members, but not that often. If you stay and read you will hopefully encounter one eventually.
If you use the search and are lucky you might find one.
I was searching online some time ago and found that in the US there is a charity for parents of children with congenital hypothyroid. It might be worth searching and seeing if you can find anything from them or any similar charity. If you don't find thyroid cancer patients she might be able to meet other young people who have had serious illnesses or operations.
I've had thyroid cancer and continue to be disabled 6 years later. In that time I've found it easier to make friends with other people with disabilities and chronic illnesses, often different ones from myself. We often have a lot in common even though the mechanics of the illness are different.
It is true what you say SilverAvocado, It is easier to make friends with people who have either the same condition, or similar due mechanics.
I was born with congenital hypothyroidism, my parents found out when I was five weeks old. Unfortunately I was in a coma but thanks to a Health Visitor, I am still here! Never had any problems as such growing up, apart from a dose decrease when I was about five, as my bone age was older then it should have been. But relatively healthy apart from that. Was on the same dose for most of my young life until my early thirties. Then the trouble began.
It has taken its toll, but I am fighting back now, albeit slowly, my life and mobility in particular has been particularly disabling in the last fifteen years or so, especially the last ten. But I do believe I am on the right dose for me now and the dr's do leave me alone at long last, apart from my annual checkup.
I have recently started to lose weight again, I seem to go in phases of losing weight, other times, I just maintain. I just find that I get judged for my weight, yet I never had a problem in my younger days before they started messing me around.
Unfortunately, people will always judge, whether it be family or others. No one will ever understand how frightening it can be, unless they have a thyroid condition themselves, and what circumstances you find yourself under, whether it be gradual or having to have surgery. All I ever say to people is, we can live without our thyroid gland, but not without the hormones it produces, so we have to supplement them with medication. Get to the right dose, is tiresome on its own, getting people to understand and listen is a troublesome chore as well.
I always say, that if I got a penny for every time, someone raised their eyebrow when my thyroid condition was mentioned, I would be a very rich woman. I laugh though, although sad, but very true unfortunately. I think we get cynical as well.
Professionals and people in general have to remember that we are supplementing our bodies with hormones to sustain our health. We are not eating candy or taking vitamins and at the end of the day, one pill does not fit all, we are individuals whose needs are different and we all thrive for what most people take for granted, that is quality of life and hopefully this will bring us happiness.
Thanks JollyDolly, a good friend of mine has congenital hypothyroid. He also did well through childhood on Levo and in his late twenties had his dose messed around with and has struggled ever since. He is the worst converter I have ever seen. Maybe it's a common pattern.
Unfortunately it seems to be. I have been lucky in that way. I do feel for your friend though. It must be hard for him.
As a young adult, I was told that I might have problems with fertility, but I didn't have any problems until I hit my thirties. I am thankful for my two girls and forthcoming granddaughter due in a month, but have always felt guilty and sad for my new husband, as unfortunately I had several miscarriages, so could not have any more children, and I do blame that on all the messing around that was going on. It was actually my Gynaecologist that referred me to see the Endocrinologist as her words were "Your thyroid condition is so out of kilter" say no more....
But I think the sad thing is, I most probably would not have needed the T3, if they had left me alone initially. I certainly would not have had the problems I have encountered now.
You take care and in the knowledge, I am always here with a listening ear
I found some people who have written on behalf of their children:
Mom2Danni
FJGDpurpleflower
Purplepinkpixie
Shaws1
I don’t know how old they are, it’s not always written, but if you look up their posts you may be able to establish contact. If you type in “daughter with hypothyroidism” or “daughter with cancer” in the search box, you can find their posts.
I am not a young person , but had a TT 6 months ago for Graves and understand how your daughter feels.
I hope this helps you and your daughter - and I hope she will feel better soon. Wishing you both all the best.
There was a post the other day by a - janedudman - this lady was asking for her daughter and in a similar position. I think by my highlighting her name she will be notified that she has been mentioned in a post, and if curious hopefully finds you. I think that's how it works - sorry but I'm not very computer literate -
otherwise look back 4 days and the heading reads - hashimotos , then cancer and full TT what effects does this have on the endocrine system.
If you'd like to send a private message you can click on the member's name and you will get through to her profile, there is a button labelled MESSAGE.
My daughter had her TT in June. She is still on calcium supplements. She had follicular carcinoma. She's willing to talk to your daughter. She's just stated school and is busy so it took us long to reply. She never had panic attacks but has been through two surgeries. Pls message me privately if you want any help.
I'm sorry to hear what you and your daughter have been going through. As one of my past doctors said, it can be really difficult for us to feel 'whole' again after such an ordeal.
I also had papillary thyroid cancer and TT at a young age, though I wasn't a teenager. I was diagnosed shortly after my 22nd birthday, and am now 27. I can't imagine how devastating and maybe even infuriating this must be for your daughter. Usually when people have to deal with these kinds of problems, they come later in life, when you already have an established sense of self and purpose to lean on. Youth is a time when we're supposed to explore and figure that stuff out along the way. It can be tough to feel safe and well enough to do that when you experience a serious illness so early. It's a true f****** shock, excuse my language. Again, I'm truly sorry to hear what you've both been going through.
But I also had a lot of victories after the TT. I graduated from college, fell in love, moved across the country, held multiple jobs and finished my Master's degree. I've had some low points physically, but (especially with the help of this board) there's always been some way to bounce back.
If your daughter would ever like to talk with someone who's been through this and managed to live a pretty normal, even pretty fun, adolescent life, please let her know she can reach out to me anytime.
Hi. I'm so happy to hear from you and such beautiful encouragement. Yes are you American? She wants to talk to you . Yes please. My number is 972.762.6840. Please text me for a time to talk to her. Her name is Isabella Melton. Izzy
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