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Don’t Expect Forgiveness Anytime Soon, Dear Thyroids
Dear Thyroid,
I HATED YOU AND MY SONS THYROID!!!! YOU DESTROYED OUR LIVES! AND I’M SO ANGRY!
I am a 40 year old woman who was diagnosed with a severe form of Hashimoto’s/Thyroiditis in 1999. I was very ill and almost slipped into a coma. I struggled for 10 years with a up and down TSH numbers. I slept ALL the time, hair fell out, weight up and down, skin turned black, total hysterectomy, etc. I can honestly say I’ve been sick for a long, long time, even with meds. A year ago I had a total thyroidectomy. My thyroid was the size of a pea. My surgeon said it was stuck so severely onto my esophagus. I’m NOT a well woman. I’m prone to infection ALL the time and tweaking of the meds. And if that doesn’t suck enough….
… Last month my 19 year old son went in on January 20th for a complete thyroidectomy. He was also diagnosed with the same rare form of Hashimoto’s/Thyroiditis. This disease started changing my son 3 years ago. Depression, panic attacks, fear of things, trouble swallowing, hair loss, darkened skin. And, actually at one point he was on 125mcg of Synthroid and his TSH was 51.13!!!!! My poor baby slept 20 hours a day and just wasn’t functioning. He was too tired to do anything; getting worse and worse and worse. And as a mother, it KILLED ME INSIDE! Well he had his thyroidectomy done by the same surgeon that did mine. I received a call the next Monday morning from the surgeon and found out that my son’s goiter was so large, that when pathology cut into it they found cancer — Papillary carcinoma. I was shocked because it did not show up on any of the ultrasounds.
I think this website was sent to me because I have not been dealing with this well. I’m totally heartbroken and angry. My son? My only son. No. CANCER????
Well, yes. I’m trying to be strong for my son, be brave. But when he’s sleeping, I’m crying.
My family and friends have reached out and I can’t reach back right now (crying right now), I just can’t. How could they possibly understand what my son and I are going through? They can’t. They’ve tried. It’s been almost a month since my son’s surgery. He’s been to the doctor 3 times since then because he has been so ill. I wish, I bargain, to make him better, for the doctors to maybe, finally get his TSH, Free T4 and T3 NORMAL. I want my son to be ok and live a long life… That’s ALL I want. And all I see is my son sick from this disease….
I have a lot of anger towards our thyroids. They FAILED US!!!
I’ve also heard from family and friends….”Oh, thyroid cancer is the “good cancer”. PLEASE… NO CANCER is good.
Thank you for letting me vent. I really believe this website found ME…
Dear Thyroid….I hate you…I can’t accept what you’ve done to me and my child…. Not now… Maybe one day I can learn to accept….
Written by: Annie —
Tags: Dear Thyroid Letters, genetic hashimoto's thyroiditis, hashimoto's thyroid cancer, hypothyroid blog, hypothyroid forum, hypothyroid support, mother and son with hashimoto's, rare hashimoto's thyroiditis, teens with hashimoto's thyroiditis, young men with thyroid cancer
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14 Responses to “Don’t Expect Forgiveness Anytime Soon, Dear Thyroids”
Leave a Reply to Lisa Davis Budzinski
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Annie –
The same things happened to my entire family. My mom had Hashimotos, pretty severely, but doctors never realized why her meds could never take care of it. Then, when I was 25, I found out I had it and papillary cancer. Then, my younger sister found out she had Hashimoto’s, too.
I’ve been struggling for nearly 2 years now since my surgery to get a TSH in the normal range. For the first 6 months after surgery, I had TSHs in the range from 1.3-47.4… it was insane. I had parathyroid problems, I was in and out of the hospital because I kept cramping up and losing various minerals and I was getting deposits in my joints. It’s been a long two years – but I finally have a TSH in a target range, little evidence of cancer left, and I feel better than I have felt in the last 10 years.
I am so sorry for what you are going through, but you are DEFINITELY in the right place – people here UNDERSTAND!!! Let it out!
I wish you all the best!!!
I’m a thyroid cancer “survivor” I understand, you are allowed to vent, that is why we are all here….try to keep a positive attitude…my levels are always changing every 6 months and I’m going into my 6th year, its tough and not an easy way to go through life…be your own patient advocate..my heart goes out to you and your son..Good Vibes and Positive Energy sent you way {HUGS}
Dear Annie, I’m so sorry you feel this way and have so many problems. I’m not in a good place myself lately, but wanted to let you know that you’re not alone. Not many people understand thyroid issues, I myself have never thought about it before I was diagnosed hypo. I guess it’s something we have to get used to. You have every right to be angry and sad and cry as much as you want. I hope that things will improve for you and your son, that you will receive all the help you need and better days will come soon for you both.
I hope and pray your son will get well and be able to live a normal life.
You have both suffered so much.
Many of my family suffer with thyroid disease and it has almost taken the lives of two of us, my brother and myself.
Dreadful disease which is so misunderstood and under treated.
Bless you both.
Dear Annie,
I understand completely as well as others here at Dear Thyroid. I too had a very big goiter with carcinoma and yes the surgery, the cancer and all the symptoms are so very hard to deal with on a daily basis. You are “allowed” to be very angry. Use that anger to make sure you and your son have a good endo dr that you are very comfortable with and will listen and try any meds necessary to help him feel better. We are all here for you. Be assured this group can definitely sympathize and relate to all that you are going through. Sending you and your son warm healing light.
Lisa
Oh Dear people…Thank you for the very kind responses. I have felt so alone. I am angry and hurt. I also feel GUILT that I alone passed this down to my son. I wrote this letter late last night. This morning I talked to my son about this website and let him know that he could find support on here. Thank you again, Annie
I’m so sorry to hear how much you are suffering. I have Hashimoto’s too, though not as severely as you, and I’ve been doing hours and hours of research since I was diagnosed last year. I’ve learned that Hashimoto’s is not so much a thyroid problem as it is an autoimmune condition. If you treat the immune system, instead of just the thyroid, it can help to reduce many symptoms. There are also other likely components to treat, like a leaky gut and food intolerances—especially gluten, which is a no-no for people with autoimmune conditions.
I highly, highly recommend that anyone with hypothyroidism and especially Hashimoto’s get the book “Why Do I Still Have Thyroid Symptoms…” written by the brilliant Dr. Kharrazian and then find a qualified doctor who follows his protocol (they’re generally nutritional chiropractors). You can check out his website at thyroidbook.com for more information.
If left untreated, Hashimoto’s can lead to other autoimmune diseases like Type 1 Diabetes, Rheumatoid Arthritis and others. I’ve already got the first stage antibodies for Type 1 Diabetes but I’m working like crazy to avoid any progression of it. I’ve had to change my diet drastically and spend some money on testing and supplements but it’s been well worth it and I’ve seen some amazing positive changes since I started the protocol.
Trying to keep a positive attitude, even when that seems nearly impossible, can help too. Good luck!
Hey Annie…big hugs stretching out from Australia to you. I had 15 years undiagnosed severe Hashimotos too. Slept 18-20 hours a day. Severe depression. Lost my kids, my life, even had to do a drug test by peeing into a cup in front of 3 nurses, coz my ex-husband was convinced I was a junkie and took the kids away from me.
I finally had a thyroidectomy 3 years ago, and had a cancer in mine too. 3 years on, I still struggle to be ok.
DO NOT feel guilt that you ‘passed it on’ to your son.That is genetics through and through. If you had a contagious skin disease and failed to not keep away from your son, then you can feel guilty! Thyroid disease is the most common endocrinological disease in the world! It’s NOT your fault so >smacks your butt< and tells you to use that energy elsewhere.
Cheers!!!!
Hi Ria,
Thank you for the post. Oh Ria, I’m so sorry for all you had to endure. When I just read this I felt so bad for you. You’ve been through a lot. We all have on here. Prayers for you Ria…
Peace,
Annie
Hi Annie,
I am a follicular thyroid cancer survivor with a ten year old son, I feel your pain. I understand your plethora of emotions for your son and for what your disease has done to you. Because this “good” cancer can be hereditary I worry for my child. I feel for you on so many levels.
I hope you don’t take this the wrong way but maybe your son will do better being on thyroid replacement hormones than he would have suffering like you have. Once he gets through this initial process of adjusting to the meds he will feel better, probably better than he has in a long time. Right now his body is still adjusting to the surgery and the meds. Give it a little time. My guess is that they are going to try to keep him as hyper as he can tolerate for cancer supression purposes, at least for the first five years. Make sure he gets his levels checked often please. Find out from the endo what the target TSH is for him and work with them to get to that number. It takes time as you know well. It is better to use brand name thyroid replacement hormones if you can for the purpose of more consistent labs, the less variables (i.e. generic manufacturers use different fillers which some of us absorb differently) the better. I also try to fast before I do bloodwork just to be consistent.
It took me eight months and four dosage changes to get back to feeling like my old self. It took me forever to figure out that it was my synthroid dose that was making me sick (emotionally and physically), I thought it was everything but. I chased good health for two years. It can get better and it will. It really will. Please pass that message along to your son.
I am friends with another woman who has a 16 year old son fighting this same battle. He is doing RAI right now. Maybe they can communicate with each other. Let me know your thoughts on that.
Please try to take care of yourself as well. I am a mom and understand how you are focusing on your son primarily but you have to remember that if you are not well you can’t be in tip top shape for him. He needs you.
Aww, I know how hard it is. Give yourself permission to feel anything you want but then get up, dust yourself off and help him and yourself. I really believe you can get to a better place and help him do the same. Chin up!
Donna
Dear Donna,
I just got done reading your response. Thank you, that meant a lot to me.
The night I wrote the first letter I was SOOOOO mad! I’m doing better because, well first of all I see progress with my son’s health every day and that makes me smile. AND because to all those people in my life that have reached out to me, I HAVE REACHED BACK and recieving support like I can’t believe. Writing this first letter on here helped me VENT and felt incredible!
In regards to some of your questions. My son and I have an AWESOME Endro Dr. and an AWESOME oncologist/surgeon. The reason why I struggled like I did for so long and was left undetected was that I’m adopted, was at 4 months old and had NO family history of anything.
As far as my son they want his target TSH to be 0 to 1. right now it’s 10.1. They are on top of everything with my son. Labs, visits… meds adjusted etc. OH and for the 11 years of my journey and for the last 3 years for my son we are ONLY prescribed NON GENERIC thyroid hormone.I’m so thankful for my doctors, family and friends and for all of you here.
Right now…I’m doing so much better. The day I wrote the first letter on here I was in a DARK place.
No…Not ready to forgive these thyroids yet but learning to accpet..
Peace…
Wonderful news. Yay! I’m happy for you and your son. Sounds like you have it all under control. If your son ever wants to chat about his experience to another guy let me know and I can put you in touch. Smiling for you both!
A mother feels truly helpless when her child is suffering and she CAN NOT fix it….be strong, but allow yourself to feel any/every emotion that comes your way. Just don’t stay stuck in the ‘bad place’
I’m so sorry that you and your son are going through this. I cried in pain for you both when I read your blog. I also have Hashimoto’s Thyroiditis, along with Rheumatoid Arthritis. I have just had cervical spine surgery on 3 levels, with titanium plate screwed to 3 vertebrae, and 3 disc replacements. I had lumbar spine surgery in 2006, and need another one, but am waiting as my cervical surgery was in Feb. I have a lump in my neck, that has been bothering me since Feb. I have made an early appt. with my specialist. My hair is falling out LARGE! I am a 43 yr old mother of 2 sons. My youngest is 15, and has ADD. My eldest is 17, and has Severe Autism, and ADHD, he is non verbal, and extremely aggressive. There is no help for me. I cannot meet all of his high needs anymore. I always said “He’s mine, and I am not giving him up”. Unfortunately, I have no choice. Because of my deteriorating health issues, he has been placed at priority level on a waiting list. It really breaks my heart. I cant even hold a pen some days. I go next Thurs to get an ultrasound, and blood work. I have no energy yet again. I cant bare this too much longer, with Michael continuous meltdowns etc. The stress is killing me slowly. I really feel for you, and this is why I wanted to write to you. You are in my thoughts. I wish both of you well, I truly do.