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Happy Birthday To Me
Dear Thyroid,
This upcoming Sunday, March 13th, will be my 22nd birthday–marking almost two years of being diagnosed with Graves Disease. Funny how the average age for onset of Graves Disease is 20…like “Hey girl, Happy Birthday!” It was like being welcomed to adulthood by adding the responsibility of searching for doctors, getting poked and prodded every week for blood tests, and dealing with the horrible symptoms.
I was diagnosed at the beginning of my junior year of college after some of the worst months of my life. Everything seemed to be falling apart; my relationships, schoolwork, health, etc. That summer I had stayed down in North Carolina, where I go to school, instead of going back home in Connecticut. After realizing that I was not this miserable person I had become in the past couple of months, I scheduled my own appointment with a doctor to find out what was wrong. I basically did everything that summer, and have since to take care of my Graves Disease. Not that my family is not supportive or didn’t care about me, but they never seemed to understand what I was going through. No one did. I was not only struggling with a medical condition, but my mental/emotional state was at a definite imbalance.
Thankfully, after I started taking methimazole, my thyroid levels went back to normal. I have been off of the medicine now for about 6 months. Unfortunately, I feel like some symptoms are returning. I’ve been having more and more heart palpitations, mood swings, trouble sleeping (but more tired than normal), and a lack of concentration.
Being my senior spring semester, I do not need any of these symptoms back, or the trouble of dealing with Graves Disease and treatment again. So here is my birthday wish: Graves Disease– go away for good!
Cheers to another birthday and all those women out there who know what I’m going through. It’s nice to know I am not alone.
Written by – Karen
Tags: chronic illness diagnoses at 22, Dear Thyroid Letters, diagnoses of Graves at 22 years old, graves disease blog, graves disease forum, graves disease support, Graves patients on methimazole, Happy Birthday Dear Thyroid, impact of Graves disease on college students, young adults with Graves disease
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7 Responses to “Happy Birthday To Me”
Leave a Reply to Christina
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Karen,
I know what you are going through. I had my first obvious symptoms of Graves Disease, last year on this very day. The palpitations/racing heart was/is the worst. I am on methimazole, and it has helped… still working on getting the dosage right… but the symptoms have all but gone. My endo talks of the day when I go into remission, it scares me to think that off the meds, I will be watching for that horrible bunch of “symptom” stuff to come back at any time. I would love to be able to control this naturally… but for now I take the pill and do what I can.
It was a terrible 20th birthday gift that was given you. I was 44 when Graves came calling. I have learned so much, and I am sure you have also. Good luck to you, and don’t let the symptoms get bad before going to have them checked out!
Amanda
Hi Karen
I know exactly how that feels although I was older when it happened to me. I found out that I am allergic to methimazole and that was even worse together with the graves disease. I eventually ended up having half of my thyroid removed! Four years later it has grown back, bigger and more aggresive that before. That was when I went for the radioactive iodine. I am still, 6years on, not sure if I did the right thing!! It is difficult to make the choices to what one must/should do and the internet is basically my reference manual – I live in South Africa and there is not much to say about the way that doctors treat thyroid/graves! Hope you can fight this and that the graves will leave you alone – get better soon!!
One big factor in a long-standing remission is to remain on the medication UNTIL the TRab are showing less than <0.9 and the TSI are under <80% (range 129%). IT's really important to measure *both* because TSI can hide as blocking TRab, and will switch back soon after Methimazole is stopped.
It took my son (dx'd at age 9) and myself four years *each* of therapy to get those antibodies low enough to be proclaimed as "remission".
Also – when you get the blood tests run, be sure to get the actual thyroid hormones – FT3 and FT4 both. (TSH can falsely remain suppressed in Graves, and isn't a thyroid hormone anyway).
If the medication seems to keep your T3 and T4 at the bottom end of the normal range, and gives you too many hyPO symptoms – don't stop the med if the TRab/TSI are still high. Instead, ask for a small dose of replacement hormone (ie Synthroid) — this will help keep your labs normal while the therapy continues until you are in true remission.
By the way, my son used this method (until TRab/TSI were well below range) and has been in remission 5 years now – even during his most stressful year in high school (Full International Baccalaureate studies). He even had the eye disease (proptosis) at age 9 – which is completely gone now.
I've been in remission 3 months so far – I'm keeping my fingers crossed.
Just some tips that might help on your next go-round!
Good luck!
Val
Karen – thanks for sharing. I have had Hashimoto’s for 16 years and the hyper/hypo was insanity!! My thyroid is no longer in the roller coaster mode but is now slowly dying off which in reality is so much better than the highs and lows.
My son is 22 years old and is now having too many symptoms so we took him to the doctor…it saddens me to see doctors still do not understanding this disorder. I think I pissed the doctor off by telling him the common symptoms of Hashimoto’s as he insisted my son may need the series of heart testing to see why he is having heart palpitations. I told him that it was from the surges of hormone from the antibodies and he just looked at me like I was stepping on his territory! Love it!! I always have to educate the doctor’s today!
Of course, the doctor only tested his TSH and that came in at 3.85, within normal range as far as this doctor is concerned. But, I know these tests are worthless. But, I have a baseline now for him and will continue to search for a doctor that understands the complexity of Hashimoto’s.
For all of you young kids out there struggling with thyroid issues, stay strong and do not let any doctor or family member tell you how you are feeling. We know first hand exactly what you are feeling….and it sucks royal!! Hang in there….and we will continue to fight for you until every doctor understands!!
Thanks for the support and sharing your story with me and others!
Hi Karen,
Thanks so much for sharing your story. I’m sorry you’re still battling it out with Graves; I’m confident you will get through it and get well.
I was diagnosed with Graves when I was 22 and endured anti-thyroid drugs for a year; I felt awful but after I finished the course I actually went into remission. I was ok for about a year but after a very stressful period in my life I became hyperthyroid again. This time I went for RAI treatment and it seemed to do the trick. It was scary when I subsequently became hypo but taking one tablet a day isn’t so bad – at least I feel better.
As most people will testify, having a thyoid disorder will always be a variable condition. For the most part, I’m feeling much, much better now, but I know having a thyroid disorder is a learning curve – I’m learning a lot about my body, how to listen to it and what to do when I don’t feel right.
It can be a hard road, especially when doctors and/or those around you don’t fully appreciate just how difficult it can be. I found it useful to show leaflets, newsletters and books to relatives and my employer (turned out the office manager realised she had a thyroid problem!). Communicate as much as possible with work/school and keep them updated – it helps them and can even make you feel more in control of the situation.
Stay positive – you will feel better 🙂
Thanks for the response and support. I just recently received back my results from lab work done a few weeks ago and looks like I am heading back towards hyperthyroidism. If Graves come back again I will probably head towards radioactive idodine. I just don’t want to be on this roller coaster anymore. Is it true that with RAI treatment you need to be secluded from others for a few days? The thought of killing my thyroid kind of scares me and the process of doing so.