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Dear Thyroid, How Many More Teen Years Would You Like From Me?
Dear Thyroid;
Well, it has now been 3 years since I found out you have existed.
Let me tell you its been a hell of a 3 years not to mention me being a teenager and all. You ruined my freshman, sophomore, and now junior year of high school, but thanks to my new friend Armour, you are NOT going to ruin my senior year.
For the love, I am 17 years old and have seen more doctors in the past 3 years than my 70 year old grandma has seen in her lifetime.
Not to mention I nuked you twice so you wouldn’t send me to the grave. Yet everyday you still give me damn trouble. My teachers think I am a druggie because all I ever do in class is sleep. When I’m actually awake, I just stare off in a gaze.
The only time I raised my hand for a question in class was in biology, and guess who they were talking about? You, of course.
I sleep more than I am awake, yet my doctor says I’m actually hyper just because I take Armour and I have a suppressed TSH. Hyper my ass. I’m taking almost the right amount of what your SUPPOSED to, so I am going on a doctor hunt to get the correct dose.
It would just be so much easier if you didn’t get diseased and didn’t start overworking yourself, then I wouldn’t have had to hurt you.
Hate to break it to you, thyroid, but Karma’s a bitch!
–Written by Megan
Tags: Dear Thyroid Letters written by teens, Graves blog, Graves forum, Graves' support, letters written by teens with Graves disease, teen support for thyroid disease, teenagers with hyperthyroidism, teens coping with thyroid disease, teens with Graves disease, teens with thyroid disease
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22 Responses to “Dear Thyroid, How Many More Teen Years Would You Like From Me?”
Leave a Reply to Val
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megan: i know exactly what you’re going through (save for taking armour; my doctor won’t let me!). i was diagnosed as hypothyroid at age 15 but was experiencing symptoms for 4 years prior. it’s so difficult to deal with, especially at such a young age. i’m 21 now and it’s still a bitch! if you ever want to talk to someone, please email me at hillary.m.block@gmail.com. i’d love to be there for someone that needs it, since i was never able to experience that support that i needed!
Thanks so much for your kind words!! You should fight for your armour if you doctor wont let you find one that will, fight for it girl!!! It is worth it! and if you ever want to talk to me as well my email is meganrific@aol.com hang in there!
hi, i was 18 when i was diagnosed, just after having my first child. it was crap, and still is! im 24 now and have 2 kids and being tired even though im medicated is really hard when i work part time and look after the kids the rest of the time!
i feel for you i realy do, i was allways asleep at school, and then i would go home and sleep until the next day!! and no1 ever noticed i was ill!!??
i am yet to find a doctor that gives a crap about my thyroid, if i find one i will be sure to shout their name from the rooftops so that other thyroid patients can get the treatment they deserve 🙂
much love,
Rachel 🙂 x
Thank you for your kind words Rachel, Its tuff having it as a teen but must be 10X worse with kids! I am going to a new doctor tomorrow so crossing my fingers he is a good one!
I have to say likewise (although I have never wanted to go on armour) – I was diagnosed at 17 (I am now 20, so it’s also been 3 years for me) and Megan, what you said about staring off in a gaze and never actually answering a question – same! The thing is that I didn’t have a struggle of finding the right doctor because I never actually realised what was going on until I was 17, and even at that point I only noticed the majority of my symptoms were coming after meals and I thought I had allergies (turns out I have a stomach condition as well). I was lucky enough to be taken to a private doctor, had the blood test, and was referred to an endocrinologist (who then proceeded to check my other hormones..). I usually don’t comment on here because I don’t relate to a lot of people – for me getting diagnosed was one of the best things that ever happened. Yes it is a struggle now, keeping my health under control (I was very fit and healthy before I was diagnosed..I just didn’t know what else I was missing out on) but it’s better than what I had before. I think the doctor I saw was shocked that I had slipped through the hole of people’s attention, that no one had noticed how hypo I was, and I think I didn’t notice because I was stuck in space.
My email is mynameislouise@hotmail.com
Sorry about the length ^^ 🙂
Ah forgot to say…so far as I know I had symptoms for 7 years before…teen hypothyroidism is waved off as puberty, right 😛
Omg it’s like you took the words right out of my mouth! I was sent to about 4 shrinks because of my debilitating depression and anxiety. Did no one think to have a blood test done, considering the weight gain, ice cold hands and feet, and near-comatose state? I’m still bitter about it all
Hi Louise! I am glad you can relate to what I go through, 7 years wow!!! I had symptoms for about 2 before getting a diagnoses. You my friend have been through alot!!! I admire your bravery and feel free to email me as well meganrific@aol.com if you ever wanna talk:)
ps: don’t worry about the length I know how frustrating this disease can be
Megan – I think it was so brave of you to share your story. I’m sorry that you’re going through so much. I love, love, love and admire your advocacy for yourself. Unfortunately, you had to learn at a young age, but you sure did learn it. I’m super proud of you.
Having this disease at any age is pretty awful. Knowing that you have had to deal with it all through high school is just as awful as any of us – kids – adults – seniors – men – women – what’s good?! WE HAVE EACH OTHER!!!
Hi Megan!
My son is 17 and was dx’d with Graves when he was only 9. He went into remission at age 12 and has been in remission since. He got on a therapy called Modified Block and Replace — a fabulous way to force the thyroid levels to stay at one set place. If you can’t keep a thyroid stable using ATDs, then someone is doing something wrong.
As for using Armour when you have Graves — make sure your TRab antibodies are not rising from the proteins in the Armour. If TRab/TSI goes way high you’ll be at risk for other autoimmune diseases. So make sure your docs are keeping an eye on our autoimmune disease as well as your thyroid hormone levels. Rembmer — you do not have a throid disease; you have an autoimmune disease -caused by antibodies that are doing things they shouldn’t.
There’s a lot more to this therapy than I can post here. Please visit us at http://health.groups.yahoo.com/group/graves_support/
Best to you!
Val
val – I’m on that group page, but I can’t find anything re: the therapy you wrote about Modified block and replace. Are you referring to Low Dose Neltrexone?
My daughter Roxy is 13 and was diagnosed with Graves disease this past feb. She had been showing symptoms (now that I look back I see them)for over a year. She had been to the Doctors and they never caught it. We have NOT got it under control yet. She is currently on 300mg PTU. My biggest problem is school. I am hoping you can give me some advice on what to do in that area. She was retained this past year for failing grades. Obviously NOW we know why. I tell them “she just doesnt get it” they seem to think it’s her being stubborn. She is failing again this year. She doesnt do classwork, she brings no homework home, the teachers refuse to provide notes for her. I am just at a loss and have been BEGGING the school for any help. We had an IEP and a CST meeting. She recieved a few accommodations but, I havent seen any of it put into action yet. ANY help would be greatly appreciated. My email is deborah.wright1@verizon.net
i had similar problems when i was at school, i was doing well until my hypothyroidism kicked in just before my exams. my best advice is to explain to the teachers that even though she looks well, she is ill, and needs help and support to learn. Also try not to worry about her grades or pressure her as it wont make any difference. just be there for her emotionally. i failed my exams but pulled myself together and got into college by showing them that evn though my grades were bad that i had the intelligence to succeed! and i did! me my mum and my 2 sisters now run a photographers where me and my mum take photos and feel like iv never worked a hard day in my life because i love my job so much! grades are not everything and i will tell this to my 2 children when they are older. they are 6 and 2. i hope your daughter has a very happy and succesfull life with the support of her loving family like i do 🙂 xxx
Hi Debbie ~
Please come join us at graves_support on Yahoo groups. My son was 9 when he was diagnosed (I also think he had it years before) and was put on methimazole (low dose) for 4 years and went into remission when he was 12. He’s 17 now and in the IB program at high school – doing great.
It sounds very suspect that your daughter has stayed on 300 PTU 4 months. This is too high (and kids should be on methimazole anyway). Please join us on our board. I also had Graves and took MMI for 4 years. I went into remission in Dec. Been med-free since.
My younger son has Hashimotos and has an IEP for several issues he’s dealing with.
http://health.groups.yahoo.com/group/graves_support/
Come join us over there (*You can also join GravesKids on Yahoo too — I’m on that one as well).
Best to you!
Val
Val
She did take Methimazole for a month but was allergic to it. I spoke to her doctor today and she is now up to 400mg PTU because he said it wasnt working. How do you go into remission?? I see alot of people talk about it.
NO NO NO! I’s Get copies of her labs and make SURE that doctor is monitoring her FT4 and FT3 labs. There is no wa that a whopping dose of 300 over two months would “not be working”. I think that doctor is not looking at the right labs — I will bet he is looking at TSH — which cannot be relied upon in Graves.
He probably overdosed her on methimazole too!
Come to Graves support. We can help you — but first get copies of ALL her labs. She is being overdosed!
Val
Val
This was her last results
TSH was 0.001
t4 was 6.1
T3 was 233
TSI antibodies was 504%
25 vitamin D 31 (I had a hard time reading this one not
sure if I read it right)
She started out with methimazole first month(was allergic)next month was 200mg PTU. he changed it to 300mg and today to 400mg. Now I am worried. Half of it I dont even understand. I have been doing a lot or research but still a little confused.
Debbie
btw she is only 91 lbs also!!!!!
What are the ranges for the t4 and t3? Those are the two thyroid hormones causing our issues. But she should have gotten a free t4 because of her age.(estrogen messes with the t4 test so free t4 is a must).
Also — look at the last labs — has t4 moved at all? If not, make sire she is not eating high iodine foods (sushi, fish, vitamins, excessive dairy) all of those things can void he PTU. And is she taking the mess precisely at 8 hour intervals and not missing any dose? That’s very important.
But first and foremost, look at the normal ranges for those t4 and t3 (thyroid hormones) and see if it’s true that the meds “aren’t working”. Kids actually need t4 a little higher than adults need.
Val
Go to the message area and post your question. I’m out of town right now but there are many on that site who are on add back therapy and doing great. I’ll answer when I get back Mon. Take care. Val
Hi Debbie~!
I’ve been so worried about Roxy all weekend and terrified that she is being overdosed. Please come back to Graves Support – we’ve responded to some of your questions with things to look for.
The main thing I’m worried about is that the doc is using TSH to guide her ATD therapy. If he is, then she could very easily be overdosed — she needs FT4 and FT3. Do you have those ranges?
There is an endo textbook online called “Thyroid Disease manager” that warns about this very thing. If you visit that site, and look under “NEWS 2007”, you’ll find this warning to doctors that they SHOULD NOT use TSH as a guide in Graves disease:
QUOTE
“Nevertheless, the clinical relevance of the present study is that as long as serum TSH is suppressed, dose-adjustments of antithyroid drugs should be guided by serum T3 and T4 results and not by serum TSH. Some patients maintain a suppressed TSH for years and, occasionally, one may see patients with clearly decreased FT4 levels because they receive a dose of antithyroid drugs that is too high in the presence of a TSH that is still suppressed.” (Endquote)
(Summary and commentary prepared by Wilmar Wiersinga)
Present summary and commentary are related to Chapter N- 11 (Section on Antithyroid Drug Therapy) of TDM
http://www.thyroidmanager.org/thyroid-news/2007.php
Please let us know how Roxy is doing. I’m really scared for her on that whopping dose of drugs – especially if her T4 and T3 are normal.
Take care~
Val
have any of you been really depressed when having under active thyroid aswell?