A recent conversation I had with a fellow thyroid sufferer helped me come up with this latest blog post.
Because the thyroid gland affects just about every cell in the body, a multitude of symptoms can occur-from your hair to your little piggies. This is why it is so difficult to diagnose and treat.
How do you begin mending a sinking boat full of holes?
My fellow thyroid suffering comrade said she could not place all the blame on the multiple misdiagnoses from MD’s, since she was in denial about several of her symptoms, and wasn’t exactly forthright with all them... in particular, the neurological symptoms, i.e., depression, anxiety, brain fog, irritability, slow thinking etc,. Sigh, why does society (myself included) sometimes have trouble understanding that symptoms of diseases can also develop from the neck up?
Therefore, in my quest to increase thyroid disease awareness and help the medical community realize EXACTLY what we suffer through, I am asking all of you to please leave a comment explaining HOW YOU FIRST KNEW, (but were hesitant to speak out). It is my hope that other thyroid sufferers and medical professionals will read these comments and perhaps, get a better understanding as to what thyroid disease is all about (not just about losing or gaining weight). Don’t get me wrong…weight is an issue, the thunder in my thighs are holding on for dear life, they do not want to leave, no matter what I do to try to get rid of them.
Ok, I will go first- Here it goes:
I first knew something was REALLY wrong with me , but did not know what to say or how to communicate this to my MD-Several years prior to my diagnosis, I began having major panic and anxiety attacks whenever I was enclosed in places like elevators, backs seats of cars and my cubicle at work. I was also having trouble with large crowds. I never had these issues before. Weird lumps on my right shin started to emerge and in my early 30’s, hot flashes were becoming the norm for me. Also, I began to start losing bits and pieces of my memory. Suddenly, (it seemed like overnight) the majority of my childhood memories were gone. It was like a giant eraser was used to remove that area in my brain where these memories were stored. This sucks, because from what I do remember, my upbringing was great!
So, this was my first “Hmmmm, something is REALLY wrong with me, but how in the world do I explain this to my doctor moment” Ha, because I knew I would receive the “Carol are you for real?” look.
K…So it’s your turn…what was yours?
I FIRST KNEW SOMETHING WAS REALLY WRONG WITH ME BUT DIDN’T KNOW HOW TO COMMUNICATE THIS -
If you are having trouble leaving a comment here on blogger then you can go to my facebook page (the link is at the top right of this page) and leave a comment there.
Thanks so much for giving some of your time to help raise awareness.
Don't forget to get your copy of my thyroid book Wow Your Mom Really is Crazy
I had many symptoms over the years - slightly elevated cholesterol & blood sugar - muscle aches that started more severely and chronically after a "weird" virus (or bacterial infection) after 3 bouts with anti-biotics "it" went into my muscles and so I started seeing a massage therapist. My MD wanted to put me on statins had me meet with a diabetic nutritionist (who talked to me like I was a toddler). I told her nurse how would I know if my muscle aches were a side effect of the statins or just my "normal" aches but she said to take them anyway. She NEVER tested my thyroid!! I listened to that "little voice" inside that said HELL NO! and went to see a Naturopath!! Like you I had no words to describe how bad I was feeling but isn't that what a DOCTOR is for - to HELP you and diagnose when you have "no words"?!? Thru this experience I will no longer be dismissed by and MD and fear the day I may be forced to see one - I LOVE my naturopath she saved my life!
ReplyDeleteI am so glad you found your naturopath. Finding someone to treat your disease who is worth a darn is half the battle. Thanks for sharing your story
DeleteMy first symptoms began with weight and memory changes, as well as feeling wiped out all of the time. I seemed to go through phases of being full of energy to not having any at all. The most frustrating part of it all was knowing something wasn't right, but having to get on with things regardless of how i was feeling. I remember waking up some mornings with what I used to call my moon face, as my face was so puffy and round looking. My hair became a big problem too, as it used to look so dry and lifeless with split hairs everywhere. My family have a history of thyroid problems,and my mum has problems even now,despite being on levothyroxine for 14 years. I'm on 125 levothyroxine now,and am feeling much brighter,so am keeping my fingers firmly crossed.
DeleteWhen I first realized something was not right was when I could not leave my house. I had odd thoughts about what might happen if I went out. I would forget my families names and become extremely upset by it. I would cry for no reason and couldn't stop. I was (of course) told I was depressed. I had extreme brain fog and still do not recall a lot of what happened during that period. My children ask me questions like 'remember when?' and all I do is smile because I have no clue what they are talking about. These are a few of the issues besides the physical that I experienced. I was finally diagnosed with Graves Disease because of a goiter and the doctors stopped telling me I was just depressed. I knew the doctors were wrong but I did not know what was wrong with me. I had a partial Thyroidectomy and have had normal levels for about 12 years with no meds. I am now showing signs of hyperthyroidism again and once again having problems with doctors listening to me.
ReplyDeleteOh, I am so sorry a "thyroidism" is coming back in your life again. I know what you mean about forgetting family member's names. This happened to me, it is very upsetting. I hope you get better and thanks so much for sharing yoru story!
DeleteWhen I could not stop crying - on the way to work, at work, on the way home from work - at 6 o'clock in the morning contemplating having to drag my sorry self out of bed. When I lost words and could barely put a sentence together - I teach English and suddenly I had the vocab of an 8th grader. Brain fog had me scared I had early onset of dementia or alzheimers. Was running scared when was floored by recurring chest infections and a new doctor tested my thyroid - all I could think was shut up about this thyroid thing (surely my lungs are more important?) and help me breathe but thank goodness for her!
ReplyDeleteThanks so much for sharing your story, I am glad you found an MD who was able to find what was wrong. I hope you are doing much better now.
DeleteI was born without a Thyroid Gland and had open heart surgery at nine months old. I had VSD. Normally, holes in the heart can close on their own, but because I didn't have a thyroid gland, it caused them to have to go in and close it for me. I've struggled with weight my whole life. I am now 20 years old and I'm finally at a comfortable weight that is healthy thanks to Weight Watchers and my local gym that is open 24 hours. I've dealt with depression. I have days where I feel like doing absolutely nothing. I am currently working 2 jobs and going to school. Why? Because it gives me a reason to HAVE to get up and start my day. I would love to stay in bed and just sleep, but I know that I need to be productive. No one understands what I deal with except my mother because she suffers from this disease as well. I am constantly called a hypochondriac and told that it is all in my head. It gets pretty old after awhile. All I want is for people to try and understand for once.
ReplyDeleteWow, Alisha, thanks for sharing your story. You were born without a thyroid gland? You could probably teach me a thing or to about coping. I am glad you are staying busy. This is what I try to do as well, but sometimes it is hard, especially if you don't feel well.
DeleteDo you take any thyroid medication at all? I am still struggling to see which one will work best for me. Armour or Synthyroid.
ReplyDeleteI take synthroid. I've taken it ever since I was a baby. If I don't take it, I could end up in the hospital. It is practically my lifeline.
DeleteSynthroid works better for me
DeleteI had a stressfull 3 months prior to my diagnosis. Got married, moved to a new state, living in a one bedroom eficiency apartment while looking for a place to live and my best friend was murdered. Then I turned 36. A week after my birthday I noticed my hair clogging the drain. My friend had mentioned having the the same issues happening and being diagnosed as hypo. I went and saw my new dr for the first time. Was asked if my head was the only place I was loosing hair. And when I said yes, he decided it couldn't be my thyroid. I asked if he would check just for "snits and giggles". Almost 3 weeks later at a different dr's appointment, I was asked if I ever had my thyroid checked. I answered with a resounding YES. He checked my labs, turned to me and said, " you either have Graves' or Hashimoto's disease, see your primary". Two weeks later, at my primary's office, I was told I had Graves' but needed to have an uptake to make sure. It's now 2 months after my blood was drawn I had the uptake done. A month later was confirmed that I had GD. Needless to say, I got an Endo and a new Primary.
ReplyDeleteHi Gina, thanks for sharing. I am glad you finally received a diagnosis. My hair started coming out too. I hope things are better for you.
DeleteI don't remember much but I DO remember my diagnoses. In 1997 I was 23 with 2 kids and started feeling cold all the time, losing weight and eating everything. My heart was always racing and then my mom noticed a goiter on my neck which led to my Grave's disease diagnosis. I had the radiation pill and then everything seemed to come to a screeching hault. I went into hypo mode, sluggish, gaining weight and so tired. Two months later I was pregnant.
ReplyDeleteEverything was ok with my daughter thank God. I recently got remarried 2 years ago and my husband can't understand it when I say I don't have energy yet I slept 12 hours. I now have a 1 and 2 yr old, total of 5 kids. Fertility was obviously not an issue for me lol. I live in Kuwait now and work on an American base. I cannot find a decent doctor at all here.
I was once told by an endocrinologist here not to eat chicken breast? My mom and I looked at each other in shock. I was working 12 hours a day until I thought I was going to pass out. I'm working 8 hours now and can barely stay awake at work. I often wonder if I'm the only one feeling like this. Brain fog, depression, can't speak correctly, sometimes I feel like an idiot when I try speaking.
I can't stay awake! I can't lose the weight! I come to this site when I feel like I'm suffering alone. I read comments and realize I'm not a freak and that other people suffer the same. I told my husband I wish for one day he could live my life and then he would realize I'm not faking and that I truly have problems.
I often wonder what life would be like if I was "normal" and I hope it isn't passed down to my kids.
Wow, girl, I never knew you had 5 kids. You are my new hero!
DeleteI feel the same way!!! It is terrible!!! I get caught on my words - sooooo sleepy all the time - FAT...AAUGH!!! There has to be someone who REALLY knows how to fix us!
DeleteI was recently diagnosed with GD back in March of 2011...after suffering miserably for 5 and a half years...I went to the hospital throughout those year probably 50+ times with heart palps, anxiety attacks, chest pain, u name it. I had doctors, nurses, paramedics...laugh at me and tell ne I just have anxiety and need to see a therapist...they shoved anti-depressants and anti-anxieties down my throat and sent me packing. Literally doctors made fun of me...it was terrible. I thought I was dying...I felt like I was screaming in a crowded room and Noone blinked an eye in my direction. My body was running a mile a minute, I had brain fog like u wouldnt believe, my memory was crap, I would catch myself sounding like an idiot when I tried to articulate my thoughts and opinions, I would sometimes feel like I was gunna seizure out, my eyes hurt, everything hurt! Ugh...it was so terrible...just horrifying.
ReplyDeleteFinally one day at work I felt like I wad Gunna break...I didn't have it in me to fight thru my day...I was naussous, dizzy, hot as Hell, and had chest pains....I was done. I went straight to HR and said I can't miss anymore work, don't wanna lose my job, but I need to get out of here and to a Dr. They put me on a LOA and I ended up in my most recent PA's office balling like a baby and begging for help. I told him if indeed I had mental problems to commit me. He stared at me for about 5 minutes and sighed...he said he would run internal tests for lupus and such...(why these tests were nor run years before ill never know) he calls me a week later and tells me to find a good endo...I was like endo? What's that? Turns out my thyroid was off the charts and I was severely hyper...sigh...I was opposite than most...I was overweight at 200 pounds...went on the meds and lost 70 pounds in a year with diet and exercise. I feel better, but definately have my lows. That's pretty much it.
Thanks for sharing your story. I was diagnosed with GD 5 years ago. It is difficult to manage. I am glad you are feeling better!
DeleteI felt like.I was reading about my life. I recently found out I have Graves. I am very hyper. However, it seems I have hypo symptoms as well. I am so happy that i can finally have answers to why my words never seem to come out of my mouth clearly. Thank monatokee.
DeleteMy thyroid was up and down since at least 2009 (maybe sooner but I haven't gone through my prior records yet to see). I had 3 children under age 4 by this point. My husband is in the military so stress is not an uncommon factor of our home. However I found myself yelling and screaming and getting really angry over the dumbest things. I still struggle with this now. In 2010 I became pregnant with my 4th child. I was highly emotional which was unusual for me even during a pregnancy. I was so far past tired it wasn't even funny. I was depressed and generally unhappy. I even asked my husband for a divorce b/c I was so unhappy. Not that I really wanted one but more b/c I just wanted to be alone. Locked away from the world. No pregnancy prior to this one had resulted in these issues. I mentioned it to my docs and they dismissed it as being pregnant with 3 other kids at home. I felt helpless and lost. At one point they put me on Zoloft because I just couldn't cope. I hated being on it especially pregnant. Eventually I ran out and the docs were just a little too willing to give it to me. So that scared me into not taking any more and simply "just dealing" until baby came. I breastfed after he was born and seemed fine for a month or 2 and then I hit the ground. I couldn't go up the stairs without loosing my breath. It was hard to hold him b/c I had weakness in my arms (and legs too). I was upset about everything. I couldn't handle social situations. I avoided going anywhere or talking to anyone. Even on the phone. Noise bothered me in a big way. I had hot flashes like crazy. I broke out in hives. One thing that started scaring me was the forgetfulness. I literally forgot to buckle my son in his car seat. Thankfully we didn't get very far before my daughter said something. I cried and was so scared and felt like a terrible mother but that is just a glimpse at how bad my memory loss has been. I kept forgetting words that I used all the time. My friends would joke about me being an alzhiemrs patient. It was scary I thought I was loosing my mind. None of this of course helped my depression. My husband and I fought all the time b/c I was appearing lazy from spending days on end on the couch. If I got overly happy or sad or mad I would have shortness of breath and my ears felt clogged. I had heart racing so bad it scared me.
ReplyDeleteI am now on Methimazole for the Graves disease. It has helped with the heart racing, dry eyes and some of the shaking. I still have memory problems. So bad I can't remember my childhood but a few things here or there. I have had to put precautions into place so that I don't forget to buckle kids or pick them up from school,etc. Graves disease has changed my life in a big big way. I am just hoping at some point I will regain my strength and memory back again. Not being able to clean my whole house on a single day or keep up with the kids without getting exhausted is my present life. I feel guilty for not being able to do "my part" in our home and feel as if my whole sense of who I am was taken away. I know there will always be a battle but some light at the end of the tunnel and better docs out there would really help the beginning of the process for us! I mean this changes our lives and it deserves some respect and consideration from the docs!
Your story sounds very similiar to mine. My memory is shot too. When I look at photo albums, it feels like I am looking at someone elses' life. Thanks for sharing. I hope you are feeling better.
DeleteWhen I was 10 went for a normal eye test where the optiction noticed a swelling in my neck so he gave my mum a letter for our gp and told her to get me to the doctors as soon as possible after a few blood tests was put on thyroxine.This was 26 years ago and January of this year had my throid removed and now take 300mg of thyroxine.i have dry hair dry itchy skin slur my speech often but thankfully never suffer from depression I have 3 fantastic children 1 of which suffers with crohns,the other 2 had prem and often wonder if this is all linked.When I was younger I was very under weight now after 3 children am very over weight the fact I love crisps and choclate doesn't help but since having it removed am slowly losing weight would just love to be a healthy weight.Don't have a problem with long term memory but my short term is shocking everyone laughs at how often I can't find my purse,keys,letters,thank goodness never lost or forgot where I put the children.I don't get down about my illness but sometimes wish I had just a little more get up and go.
ReplyDeleteI am glad you can keep track of your kiddos...LOL
Delete2 weeks ago i found out i have hyperthyriodism.Im still in the stage of finding out how it happened and why. im 25 and i dont want to know but i do. I listened to my body when i started feeling tired ,dizzy and my heart beating wierd and leaving me breathless. i was convinced i was pregnant for some wierd reason,maybe because i wanted another child but finding that out was not in my head. reading the stuff on the internet about the condition left me scared and unsure of what is going to happen to me,but after talking to my doctor i found it to be very helpful and took the ease away knowing that i will be fine.i have trouble remembering if i took my pills so a system is in place. i would like to know more about what will happen but i have to wait and see what the hospital says. i just hate the unknowing.
ReplyDeleteLatoya, I understand. I hate not knowing as well. I hope everything works out for you.
DeleteIt is nice to find similar stories...Here I thought I was an old lady going crazy lol....I have diabetes and I guess my body said well she handled that challenge for 16 years, she's no fun anymore so why not give her Graves disease!...basically I was subclinical hyperthyroid but with symptoms. My endo wanted to give me 3 or 4 more drugs to handle the symptoms and I flat out told her no, treat the disease not the symptoms, after she sat and stared at me with her mouth open, she decided 2.5mg of methamazole....you know how much fun that is trying to cut those tiny pills! But she has learned that this old lady is not normal, and things affect her differently and that I was right.
ReplyDeleteSo symptoms fade away except occasionally numbers are back into a decent range, so then the eyes got jealous, they want attention also, so now I put in eye drops for the burning, itching and get very creative when they decide to act up at work...try being an accountant with slightly bug eyes LOL...
I was diagnozed with GD about five years ago when my brother (a surgeon) noticed one of my eyes looked funny. I was hot all the time, had palpatations, was losing weight rapidly and was itchy all the time, but was chasing after a toddler so I thought it was because of being a new mother, somehow. I have been adamant about not having radioactive iodine treatments, even though it has been mentioned to me continuously. I keep saying that diabetics don't have to have their pancreas killed off, why should I have my thyroid killed off? I got very close to remission on PTU, but then had another child and it started all over again. I'm small to begin with (5'2", about 105 lbs) and got down to 94 lbs. Other women would scowl at me and tell me I should eat (this REALLY made me mad - you never know when someone has a disease, people - and I'd never tell them they were fat, thank you very much). Anyway, now my PTU has worked too well and I'm hypo, off all drugs and nothing is changing. Hair is falling out, tired, cranky, depressed. They're thinking about putting me on Synthroid. How many of you started being hyper and are now hypo (and went the medication route)? Thanks for reading! Nice to have others that can relate.
ReplyDeleteHi Lisa,
ReplyDeleteThanks so much for sharing your story. We have a lot in common we were diagnosed with Graves around the same time and we are both from Indy. I am Hypo because I went the RAI route, but even after that I toggle back and forth between hyper and hypo...Not sure why and MD's can't give me a reason...It may have to do with the autoimmune aspect of the disease.
I didn't know there was anything wrong with me. Last year during my yearly physical, my primary took extra blood and said that because I'm getting older, she would be running some additional tests. Imagine my surprise when she called and said that there was an abnormal result when it came to my thyroid and she wanted to repeat the blood test. Two months and 3 blood tests later, I'm at the Endo's office and he tells me I have Graves.
ReplyDeleteI've always been a little absent minded and noticed my memory wasn't like it had been in the past, but I didn't think twice about it (maybe I forgot to think about it). I have thin hair and was always "shedding". Just before I was diagnosed, I was living with roommates who were difficult and thought my palipatations and sleeplessness were from the stress in the house. Little did I know that these were all symptoms.
Now, I have blood tests every few months and am on the "wait and see" approach with my Endo. I think my primary is very understanding and doesn't think I'm "faking it" seeing as, usually, I only see her for my yearly physical or when I get hurt (I'm kind of accident prone). I've learned that if I'm not feeling well or have any questions, I need to contact her. When I go in for an appointment, she always takes in consideration that I have Graves.
I feel fortunate to have an understanding primary and wish everyone with Graves could have someone like her on their side.
Part I. I began to put weight on very gradually and in October 2010, for the first time in my life, started to watch what I ate even though I have always had a very healthy diet. Despite watching the calories, the weight kept creeping up. Earlier that year, during the summer, my mood 'crashed' and I was tearful and withdrawn yet didn't feel depressed; if that makes sense.
ReplyDeleteI also have an underlying medical condition - dilated cardiomyopathy diagnosed in Jan 2009 and see a cardiologist regularly. He told me I was depressed and wrote a script for Citalopram even though I told him I didn't feel depressed per se! I trashed the prescription and disregarded his opinion. My memory started failing me and there were times when my husband and children thought I may have Alzheimer's. I had lizard skin, brittle hair that was falling out in handfuls but my doc said it was all due to my depression. I was always cold and was told it was because of my Reynaud's syndrome, nothing more. When I became irritated with them, they accused me of having anxiety-depression. Aaaagh! Within a short space of time I was able to sleep for more than 14 hours of the day. My record is 19 hours! I would see my son off to school some mornings then go back to bed for an hour, but I was still there when he came home at 4pm and could barely drag myself from the bed because I was so weary. Then I had aches which I blamed on statins so I stopped taking them. Cardiologist freaked but I didn't care - I was too darned tired! It was when my hairdresser showed me the back of my head where a huge bald patch had developed, that I decided to get tough with my GP. He put the weight gain down to my age (I will be 50 next October) and told me I was forgetful because of my heart condition and the meds. I had to make a scene like a toddler to be screened for a thyroid function test. It came back with TSH 49. No screening for T3 or T4 levels (nor free T3/T4) but he decided to put me on Levothyroxine starting with 25mcg, building up to 150mcg. Initially my symptoms got better for around 3 weeks and then BOOM - they came back with a vengeance. I told him the Levo' was making me feel terrible but was told it is the only form of thyroid treatment available here in the UK (which is sadly true). I had those horrible moments of starting sentences and forgot my train of thought and would end up so embarrassed. I forgot people's names, what I had done during the day, had forgotten that I had already done laundry and put it all away - don't remember ever actually doing it.
Part II Unhappy with being told I could not see an endocrinologist since my TSH was 'normal' at 6.9, my husband had me seen my a wonderful endo' in Munich in April last year, who gave me thorough blood screening and an ultrasound and diagnosed Hashimoto's thyroiditis. He informed me no amount of T4 would do me any good since my body is unable to convert to T3 and prescribed Armour Thryoid. I can say hand on heart, within a week I felt like 'me'. My mood lifted, lethargy passed, my skin improved and within 6 months my hair grew back. My lipid levels are perfect even though I am not taking statins, which is due to the T3 being supplemented. Although my levels are seemingly hyper, my endo' treats me based on my symptoms and not on the blood results which makes perfect sense. Human beings are not machines, one size does not fit all!
ReplyDeleteI still have my dippy days and have more senior moments than I reckon most 49 year olds do BUT I feel a whole lot better. Armour Thyroid is unlicensed here in the UK and because of that, my GP will not get involved in my thyroid treatment and I have to dig in my heels to have blood screening so that I can relay the results back to my endo' in Germany.
Thyroid disease stinks, no doubt about it. No one can truly understand how we feel unless they have a thyroid disorder and contrary to what med' schools teach us (I am a doctor also), thyroid hormone replacement in the form of a little pill does not control it and help us lead our lives happily ever after. I have had my eyes well and truly opened since I became a thyroid patient with Hashi's and I am both disappointed and disgusted at the broad level of ignorance of health professionals and the general public. When we talk of our weight, they treat us like we are looking for a 'cop out' and use the disease as a lame excuse. I would not wish this disease on anyone!
My mother had a goiter in her neck, but it never bothered her. In my 20's I got Graves disease. A doctor noticed that my neck looked swollen and ordered some tests and it was found that I had a goiter too and it was confirmed to be Graves disease. That was about 50 years ago. My treatment consisted of radioactive iodine, which knocked out my hyperactive gland. I've been thyroidless ever since. Started on natural hormone therapy and later doctor switched me to Synthroid. Now in my 70's and considering switching back to natural thyroid hormone because of chest pains, shortness of breath. Stress tests and ultrasound confirm my heart is healthy, so I suspect I am low on T3. Synthroid provides T4 and the body is supposed to convert it to T3, as I understand it. Could be my old body is giving up on the job of doing this. Wonder what my GP will say to that.
ReplyDelete