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Thanks To My Mad Hyper Skills, I’m Hairless And More
(Written by Dee, Graves’ disease patient)
Dear Thyroid,
You’ve had quite the year, haven’t you? Made quite the little spectacle of yourself, starting with the chronic, never-ending stress, severe anxiety, panic attacks; I was positive that next phone call would be my boss telling me I’m fired. “Just stressing out over the new job, I told myself. Dizzy spells, night sweats, shaky hands, no short-term memory, no sex drive… “Just remnants of that year with the shitty boyfriend when I ended up on anti-depressants, I told myself. Waking up in the morning feeling like there’s absolutely no hope, nothing to look forward to, feeling like the world had sucker punched me in the gut… “Just stuck in a rut,†I told myself. I put up with this crap for years, and never thought much of it.
Then, sneaky little thyroid, you go and make my hair fall out! You wanted my attention? Well hell, that sure got it! But hmmm, what kind of doctor to see for hair loss? One who wouldn’t dismiss my problems? The pill-happy doctor who prescribed me anti-depressants and thought the whole world should be taking them? The one who insisted that my vertigo was just a little motion sickness? The ob/gyn from two years ago who declared my thyroid test results normal just so I would participate in her clinical trial for low libido? The other ob/gyn who told me I just needed a little testosterone cream? A neurologist? A dermatologist? A trichologist; whatever the hell that is? Not sure how I made the connection to endocrinologist, but I still remember calling up a top-ranked doctor in the city and saying, “My hair is falling out; you treat that, don’t you?
Imagine my surprise, dear thyroid, when the doctor I see for hair loss comes back with, “You’ve got Grave’s Disease… The nice doctor tells me, “Oh, don’t worry, radioactive iodine treatment will take your thyroid out of the picture altogether. Then you’ll just take a little pill for the rest of your life… Very simple, he tells me. Yeah, right. Just a simple rollercoaster ride through hell. That RAI treatment sure did a number on you, didn’t it, little thyroid? TSH level skyrocketing off the charts into hypo-land; extreme mental, physical, emotional, fatigue; feeling like a failure because I can’t concentrate at work; excruciating pain between my shoulder blades that landed me on the floor for a week; feeling like a basket case, just fine one day, then a crying mess for absolutely no reason the next. Up, down, up, down; Geez, you’re giving me freaking whiplash!
Oh, this has certainly been your year, you little attention-starved gland, you. But watch out, because next year is mine. Because, dear, sweet, lovely thyroid; did you hear the latest news; the grand prognosis? Normal.
Thanks thyroid, it’s been fun, but I’m ready to get off now.
(Bio), Dee, 35, was diagnosed with Grave’s Disease in March 2009. She didn’t think Grave’s was too bad, but is pretty sure she should have been admitted to the loony bin when she went full-blown hypothyroid three months after RAI. She wonders why more doctors aren’t knowledgeable about thyroid disease, and thinks thyroid blood testing should be mandatory before doctors are allowed to prescribe anti-depressants. She doesn’t quite feel normal yet, but is hoping to reclaim her mental and physical health in 2010.
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37 Responses to “Thanks To My Mad Hyper Skills, I’m Hairless And More”
Leave a Reply to Bee
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“She wonders why more doctors aren’t knowledgeable about thyroid disease, and thinks thyroid blood testing should be mandatory before doctors are allowed to prescribe anti-depressants. ”
Thyroid disease (esp. hypothyroid) is seen as a “woman’s disease”, therefore any symptoms are pronounced to be due to “menarche”, child-bearing, PMS, “perimenopause”, menopause, and/or “bored housewife syndrome”.
Requiring thyroid testing prior to rx doesn’t always help– my lab results have always been in “normal range”, despite clear signs and symptoms of hypothyroidism. The trick is, finding a dr who will look at YOU, instead of just the printout of your lab test results.
Dee
I am glad to see that the hellish ride is coming to an end for you – FINALLY!
As Kaytee stated, it’s all about finding the right doc who will look at YOU, listen TO YOU. I’m happy to see that you found that right doc.
Thyroid disease in all its manifestations is HELL, pure unadulterated hell.
I had a thyroidectomy in July 2009, after too many lost years, sanity and life to my thyroid that wouldn’t shut up and do what it was supposed to do. I just had blood work last week- having to up my meds AGAIN – but my numbers are slowly improving, I figure I’m just this close to some kind of “normal” FINALLY.
Be well, take good care of you! May life continue to improve and be all that it should be, all that you want for it to be.
Dee,
I love your letter. I can tell you put a lot of heart into writting it. I feel the letters on hear speak to me 90% of the time. I feel as if I could of written the letter about even though I only suffer from little ol’ Hashimoto’s. BUT I do feel you and I am standing in the “I want Health” line right with you. I have told my self the same things you did. It’s work stress, it’s this it’s that.. But I always comes down to they thyroid.
I am happy to hear that you are as “normal” as you can be with a Thyroid disorder and I wish you continued normalcy! Good luck! We are sooo with you. 🙂
Opps – I mean here not hear. Damn thyroid brain! Oh and I meant the thyroid. OY VEY!
Dee, when I was going through all the bad mental and physical symptoms prior to diagnosis, I had no idea what was happening to me and hoped that I could please just die. Nobody could see that it was a disease even though I was telling everyone I needed help. I avoided seeing a doctor because I didn’t want happy pills. It was only when I had diagnosed myself that I told a dr. and was tested. I have hashimoto’s. You are not alone and I’m proud of your strength in telling your story. It is alarming for us all to see each other’s suffering, yet there is some comfort in knowing we’re not alone. You are an inspiration with your determined attitude!
Kaytee – I respectfully agree and disagree. Personally, IMO, it’s very difficult not to wonder why doctors aren’t more knowledgeable. In fact, it’s downright frustrating as hell.
I think you’re right about the ‘women’s issue’ stigma. I also think there’s another layer, most doctors aren’t educated about thyroid disease. Most endocrinologists aren’t either. Few are giving us full thyroid function blood work, nor are they using the latest technology.
Endocrinologists treat us, as you said, like we are not more than the sum of our numbers.
I agree – we need to find doctors willing to work with us, the entire person.
Great comment –
xo
Christine;
I could have written your comment (post RAI). Every word you wrote is so disturbingly true, I felt punched in the gut. I relate to what you’re saying so much.
When, when, when does it end? When do we get to feel ‘normal’ again? When do we get to define ourselves versus being defined by our disease?
Love your comment!
Keep fighting, girl. You’re close to winning the war.
You’re right — a good doctor is the most important part of the process.
Hypgirlie;
All of our thyroid diseases, regardless of their title, is horrific. We all suffer. Some with crossover symptoms, others not. The point is that we understand what each other is going through. None of it is pretty. All of it is ugly and life sucking.
Great ment.
xo
Shan – Absolutely beautiful and 100% agreed. You’re right on the money, kid.
xo
5 years after being diagnosed with an underactive thyroid, I began seeing a councellor because I couldn’t handle stress at all. She happened to be suffering from the exact same thing and recommended I go to an endocrinologist. I had resigned myself to the fact that I would never be anywhere near normal again, and didn’t realise how many of my complaints were thyroid related (joint pain, headaches, etc.). I have begun to inform my GP as he didn’t have a clue as I learn more myself. I’m on the road to wellness now with my endocrinologist.
If anyone still doesn’t feel completely right, I would recommend going to see a specialist (or changing to another one)
Dee,
Thanks for posting your story. I hear ya loud and clear! –
Sometimes I think even well trained doctors should use the internet (or a diagnostics program) to get a summary of all the conditions that can be caused by a certain symptom. – Then they should go down the list and start to evaluate and eliminate, rather than follow their hunches and start treating right away. But those guys (and gals) have so little time per patient that they latch onto to the easiest thing that comes to their minds, and if, after a year or so, it doesn’t work out, then they might look again or do a referral. – I know this sounds harsh, but I do have a good friend who is a internist doctor and she (more or less) confirms my opinion.
My current endocrinologist, when I told him that I use the internet to inform myself, said “Good, that gives us a starting point to discuss treatments and options”. — I really like his attitude. – Unfortunately I also had endocrinologists who were thyroid engineering nerds and only went by the numbers and by (ill defined) ranges.
Dee, I hope your prognosis will stay “normal” for a very, very long time to come.
HD in Oregon
I’m so happy to hear that you are “normal” That’s great. I’d LOVE to hear that, but I don’t know what “normal” is anymore.
I remember the time (before being diagnosed with Hashi’s)that I went to the emergency room with stroke-like symtpoms. I couldn’t remember my name, the date, etc. My boyfriend (now my husband) took me to the ER. I had such anxiety, I thought I was going out of my mind.
The nurse didn’t even do a blood test, but asked me if I wanted to talk to someone about what was happening to me. I thought she meant the doctor, so my boyfriend and I both said yes.
Next thing you know, I was being forcibly stripped of my shoelaces, belt, bra and locked in a padded cell. They said it was required due to presenting in the ER with my symptoms.
My boyfriend had fought with them for over three hours to have me released from there. They wanted to keep me in there until 10:00 am the next morning when the psychiatrist was able to see me. It was only 6:00p.m.
We can laugh about it now, but we didn’t know at the time that I had severe hyper symptoms due to the Hashimoto’s. Although, a blood test probably wouldn’t have shown anything because the first endo doc said all normal. The new endo who diagnosed me took a look at the so-called “normal” results and said “these numbers are all over the place. Why didn’t he see this?”
I feel like I’m on Mr. Toad’s Wild Ride. Anyone wanna hop on with me?
When my dad was going somewhere when I was little, I’d ask him where he was going he’d say “I’m going crazy, wanna come?”
So to all of you out there….I’m going crazy. Wanna come? At least we’re not alone.
Love you all.
I’m on the crazy train with all of you—-what’s sick is sometimes the ride’s not so bad…and what’s even sicker is that I miss the times when my #s are hyper bcuz it gives me more pep (along with hyperverbal speech ; but that’s left for another day) The ride’s not so bad when you have a lot of friends to share it with
Jackie- I agree with you that I don’t know what normal is. I’ve had this so long and only saw I GP. I didn’t know any better. I just a week ago saw. An endo so we’ll see what happens. I’m on so much medication because every dr says it’s not related to the thyroid but reading Mary shomon’s book and reading these blogs it is. I don’t wanna be on these pills but I can’t get anyone to try and help. All I ever leave a dr’s office with is a new pill! It’s extemely frustrating. I honestly feel like crawling under a rock because I can’t handle my symptoms anymore.
Dee,
What a great letter about your journey and how you ended up, it’s no easy ride that’s for sure not even after RAI or even surgery. I hope you get to a better place than you have been and can start enjoying life to the full things will never be the same but stay positive they will be different.
BTW I don’t believe in being Normal even with GD I’ve always been abbynormal and wouldn’t have it any other way that’s what makes us unique.
Lollyx
Gwen,
All I can suggest is find a Dr who will listen to you and do a full thyroid panel including antibodies tests. The thyroid labs you should request are not just a TSH but most importantly Free T4 and Free T3 maybe then they will see that it is thyroid related. Demand your rights after all you are paying them for the service and if these pills they keep giving you aren’t helping then don’t take them.
Lolly
I can relate to all of you. I have learned more from all of you then some doctors I have had over the years.
Lolly,
Excellent advice to ask for the FT4 and FT3 values and antibodies. I periodically also ask for B12 and D vitamin, and ferritin and iron levels (because of my lingering fatigue)
We are indeed paying for the services (even if the employer pays for all or part of the healthcare insurance, WE still pay in the end! – People sometimes forget, if the employer didn’t have to pay so much for insurance, maybe the wages would be higher [sorry, insurance rant]).
HD
Orlaith;
Thank you so much for sharing your story with us and for the affirmation regarding the importance of changing doctors.
We hope to see you around more. We’re very glad you’re on the road to wellness.Please keep us posted.
xo
HD – You make a great point, aside from shitty doctors, there are GOOD DOCTORS that are under time constraints caused by insurance issues, among other things, which affects our patient care.
I also agree that it would be great if doctors spent more time educating themselves by reading the internet. Like, oh, I don’t know, read sites like Dear Thyroid — written by patients, If doctors REALLY want to know what their patients are enduring, this is where they’ll find it.
Great comment.
xo
just wanted to say hey! i too was diagnosed hyper in march 09. march 9th to be exact. although i opted the natural route and told them they could stick their radiation pill. i am still hyper but my numbers are slowly getting better. just had blood test yesterday so i am hopeing my numbers are even better than before. 1 day i hope to be normal ( by the numbers. lol) too.
so congrats on the normal numbers. and sorry you had to go through all of the horriblness of this disease.
Jackie – I am so sorry that you endured what you did and felt like you were having a stroke due to your thyroid; that is unbelievable. I am so proud of your then boyfriend, now husband for advocating on your behalf.
This is such a gorgeous and sadly true sentence: I’d LOVE to hear that, but I don’t know what “normal†is anymore.
I think it strikes a chord because so many of us feel this way, like we can’t remember who we were. How do we reclaim ourselves despite our diseases?
YES, I AM ON THE CRAZY TRAIN WITH YOU, BABY.
xo
Bee – I’m dying to know more about what you mean regarding the crazy train not being so bad. Would you mind elaborating? I’m thoroughly intrigued by your comment.
xo
Gwen – I hear you. We all hear you and understand how you feel, it’s just awful. I’m glad you’re seeing a new endo and that reading more about your disease has given you insight. It’s not you, it’s your thyroid. You will find your way back to yourself one day; we all will.
We have each other to get through it. You aren’t alone. We’re very proud of you for speaking up and sharing more of yourself with us.
xo
With LOVE, LOVE, LOVE BTW I don’t believe in being Normal even with GD I’ve always been abbynormal and wouldn’t have it any other way that’s what makes us unique.
Lolly – Great advice for Gwen! Gwen, here is the complete thyroid function panel test via Mary Shomon:
http://thyroid.about.com/od/gettestedanddiagnosed/a/bloodtests.htm
Don’t give up, kid.
xo
Elaine – I feel the same way. Thanks to every patient on Dear Thyroid and Mary Shomon’s website, among others, I have learned more about my disease than from any MD/Endocrinologist.
THANK YOU TO EVERYONE for educating us and sharing your stories.
xo
HD can I call you that for short, great point about the other test but first of all it would be good just to get the right thyroid labs and sometimes this is were doctors are lacking just doing a TSH is not adequate enough to determine thyroid status, then ask for VitD, ferritin, Iron and B12 Levels as these can all go hand in hand with thyroid disease. Pleased you are getting yours periodically that is great.
Lolly
HD – Great advice, too!
xo
Thy88ragous – Good for you. We all have to do what feels best for us. It sounds to me like your plan is working for you. You will get there; we’ll all get there.
xo
Great discussion about thyroid blood test!
One more bit of advice. If you are a thyroid cancer survivor make sure your thyroglobulin is tested and near zero. Any uptake here might be a sign of a remnant or recurrence of the cancer.
HD
Dee, thank you! your story is inspirational.
and thank you to all who take time to respond and share. I am not far from the daily hope for death, hope for health have eluded me for so long. The stories and kindness here are the turning point for me, I find myself feeling hope for the first time in too long to remember. I had lost my will to fight another battle, as I think we all have at some point, when we think we have found the answer and it leads to another dead end. It seams we each have followed the same wandering endless path for health, and help. Reading of so many people who have finally found the right path and are on stages of it’s healing, is worthy of rejoicing. I have learned so much from you all, and it has given me hope, strength, and a direction to use it in.
Thank You All
Goodness. You really were put through the ringer! Hang in there, lean on the support you can find, and do your best to keep an eye on the bright (or at least “you have GOT to be KIDDING me!” ridiculousness) of things!
Heide,
You are not alone in this battle. Don’t ever give up. Feeling better may be just around the next corner. So, we have to go around a few (seems like a hundred) corners, we can’t stop now. Just keep putting one foot in front of the other. You are strong if you think you are. Just keep telling yourself you can do this and you will.
My hand is here for you.
Hugs
Elaine
Heide,
This group here is an excellent resource and support group. People here are very compassionate, knowledgable, and they patiently listen. – Please don’t give up! You’re among good friends here.
{{{{{hugs}}}}}
HD in Oregon
HD..
What lovely thyupport from you and everyone.
You are not alone Heidi. Hope you will join in all the discussions so we can get to know you better.
Hugs
Lolly
Wow, thanks everyone for your responses and support. This site has been such a source of validation and reassurance, especially when I was first diagnosed. I read the letters here with tears streaming down my face because they are so funny, devastatingly true, and sad — all at the same time! I haven’t checked in in awhile and didn’t even realize my letter had been published.
I can relate to so many of your comments. Anyway you slice it – Grave’s or Hashi’s – thyroid disease is a sick, twisted ride. Emotionally and physically, it just sucks. I’m still trying to find “normal” and discovered that it is not defined by the ranges on a blood test. Firing the douchebag doctor who waved his magic wand (ta da!) and declared me “normal” (even though I still had a laundry list of symptoms) was a good start.
HD – Adding Armour and switching from Synthroid to Levoxyl has done wonders to stabilize my treatment, although I’m still searching for the sweet spot combination of T3/T4.
Heide – Wow, I can so relate. Hang on to your hope and keep searching for a treatment that works for you. Do things that bring you joy and rejoice in the days (or even hours or minutes) that are good ones.
Thanks everyone!
Dee