Let's post our stories here. I will start with mine:
My story is like many others, in that I was mis- and undiagnosed for many, many years, while my symptoms were over-looked by both doctors and myself. I went to doctors many times but did not put my symptoms all together until I was totally incapacitated and applying for disability, in the Spring of 1999. I am female.
I had over the years developed hair loss, unprecedented weight gain I could not lose, lowered metabolism, carpal tunnel symptoms, severe joint pain, many miscarriages, severe menses and PMS, loss of memory, mental fog, confusion, extreme fatigue, a goiter (swollen thyroid), dizziness, random shooting pains, tingling extremities, numb extremities, loss of muscle tone, muscle weakness, bruising, eye tics, cold intolerance, extreme heat flashes, low body temperature (96.7 was "normal, the doctors told me). I had developed anxiety attacks for "no" reason, heart palpitations, lost my sex drive, had unexplained fatigue, depression and suicidal thoughts.
I was a very slender, high energy person until in a serious accident when I was almost nineteen, and am now in my early fifties and overweight by about 75 pounds. I attributed many of my symptoms to those old injuries, though doctors for the most part told me I was very healthy.
My symptoms were considered to be psycho-somatic. I also had some emotional problems so attributed symptoms to that and normal aging. I went thru much counseling and therapy dealing with my inner problems, just to get more and more physically ill.
Over the years I was told I was manic depressive-depressive (meaning on the depressed side), bi-polar, clinically depressed, psychosomatic, DXed with fibromyalgia (with all pain points) and was otherwise told I was healthy. Doctors always felt my neck and said I had a goiter, but my tests all were in the normal lab range.
1992, I had to quit retail work, my symptoms were so bad. I could not grasp and hold onto a pair of socks, as they would fall from my hand. My fingers were numb, my knees and wrists were in severe pain. I went on state disability, but it only lasted for a year.
I tried for SS disability but gave up.
I tried massage, heat, food supplements, chiropractors, pain killers, physical therapy, stretches, hot tubs, hysterectomy, gall bladder removal, etc. and they even seemed to help for awhile, but problems got so bad that I finally told my GP doc at the time that I needed the medical profession to either fix me or admit they can't, because I didn't want to live like that any longer. He was not responsible for all my past problems, but he listened.
Meanwhile I was surfing the net, looking for info to aid me in getting SS disbility, when I met someone on the internet that had been awarded SS disability, who was willing to help and offer support, since she had been helped thru the net also. She wondered if I might have Cushings, due to my symptoms, which sent me researching that. I had many of those symptoms, and my doctor began tests.
I didn't have Cushings, but my TSH was borderline hypothyroid. I searched thyroid, and found this healthboards' Thyroid Board.
There were some wonderful people posting, who cradled me in care while I went thru the seriously difficult struggle of becoming my own health-care advocate while very ill, depressed and weak! At one point I was so depressed it scared my board friends, but they kept being here for me in ways no one else could, as others didn't understand or know what to do for me.
I had to discover what my symptoms meant, organize them and write them out in a way the doctor could put together to come to a conclusion of how to help me. I had to learn to be patient and deal with stress so it did not exacerbate my illness further. I learned it is usually a slow road to correct diagnosis and proper treatment.
When earlier I was DXed with fibromyalgia and carpal tunnel, I was so happy to have names for what ailed me until I learned the fruitlessness of those diagnosis'. Thankfully, I never took the drugs or surgeries that often/usually go along with them, to either hide the cause or make matters worse.
My symptoms had become so bad that I cried in front of others from the sudden sharp pain that hit me anywhere in my body at random, and I was one that never cried in front of others. I really did not want to live.
But through much research and suggestions of other posters, support from this message board, the book The Thyroid Solution, and Mary Shoman's Thyroid Forum on about.com, I was able to get a referral to an endocrinologist, get a TRH test (thyroid releasing hormone test) which reveals an underlying thyroid imbalance, and insist on a trial thyroid med.
I had to insist on each step along the way and show my reasoning, as in the minds of most doctors. "borderline" doesn't need treated. My TSH was 2 when I first became disabled from symptoms. The TSH was 5.6 when I was telling my doctor I didn't want to live like that.
The TSH went up to about 24 in the TRH test, revealing hypothyroidism. It was funny, that the endo had been positive I was hyper, due to my heat flashes and palpitations but I wasn't at all. I was hypothyroid.
I learned we can have all, either or any symptoms in hypo or hyperthyroidism, though there are common symptoms in most cases, because imbalances affect other organs and glands which also produce symptoms.
The first endo did not want to treat me, but I demanded a trial of the thyroid med, because I had read the TSH alone is not an accurate reading of what thyroid level a specific person really needs and most females need to be in the lower range. (one article about TSH is in the information archive topic).
Well, well, well, even though I was put on a low dose of Synthroid, my TSH went down and I began to feel energy coursing in my veins.
I was SOOOOOOOOOO angry at all I had to go through to get a simple and very available solution, not that I was healed yet, but to think what I had to deal with needlessly, I was just FURIOUS!
To end my long tale, I decided to use my anger energy to help others which is why I persist to offer suggestions and support on this website. This is where I was helped when no one else had a clue.
Thyroid affects every part of the body, controls whether all hormones and body chemicals get balanced. Not having enough or having too much thyroid affects mood, balance, mental faculties, female hormonal symptoms (my hormones had crashed), mood, the pain threshhold (mine was lower than any seen by my Rhuematologist), organ health, everything!!!
I changed doctors until I found one that truly listens, as thyroid is a subjective experience: only we know what we feel. What we need cannot be measured, but by trial meds we can get what we need, and I finally am getting what I need.
Yes, I still have some other problems, such as I have yet to make myself get out and exercise regularly to get in shape. But with my TSH down to just below 1(one), where I feel best, if I eat right, I can lose weight, I am getting my mind back, I feel good enough to let go of my own and other people's foibles, and have energy to LIVE!!
There were two churches of people praying for me, I was that ill from being "normal" and then "borderline" thyroid imbalanced.
My family feared I was dying.
Now I am pretty near normal for me...which is kinda crazy, but that is another story.
I share this to encourage anyone with some thyroid imbalance symptoms to learn all you can about this so you can factually find out if you indeed have an imbalance. Getting this corrected can make all the difference, just as not getting it corrected can cause all the harm.
This is just one story in the many, and I hope everyone will share here, too.
[This message has been edited by Tree Frog (edited 08-16-2001).]
thanks for bumping your story up, frog! lots of interseting things you said there.
a little over a year ago i started having these horrible anxiety attacks and sudden (out of the blue!) crying jags. i was convinced that i was dying. scared me to death since i was only 40 and have always been perfectly healthy. dr. ran lots of tests (all normal) and concluded that i should be on an anti-depressant. i hated that.....thought that only depressed people take those things! once a month i would be back in his office pleeding for help because my med wasn't doing the trick and each month he increased the a.d. dosage by 10 mgs. the more mgs. i took, the worse i felt. finally he checked my tsh levels and learned that i was hypothyroid and prescribed levoxyl. again, every month i would go back and report how lousy i felt (depressed, lethargic) and each month the a.d. dosage went up.
finally the light went off for me and i decided to switch docs. my thyroid levels were rechecked and my a.d. was changed to something better (for the time being) and since my tsh levels were still low, i was switched to synthroid (higher dosage.) now, i'm feeling TONS better! granted, i'm not wanting to run a triatholon or anything like that but at least i can manage to wake up and get my 6 year old off to school on time.
i read the book "the thyroid solution" and found a MULTITUDE of valuable information! i've learned more about hypo from that book and this board than from the doctors. they simply don't take time to tell their patients little things like, you're panic attacks and crying jags are related to your thyroid.
The Following User Says Thank You to emmeline For This Useful Post: willijean (06-26-2012)
thx tree frog for all of your help and your honest account of what has been going on with you. No one truly understands all of the symptoms that hyper and hypo can cause us to suffer. At your suggestions, I too have finally gotten a hold of a copy of The Thyroid Solution, I encourage anyone that does not have answers to read this book. In the first two pages I exclaimed "it is me" and felt comfortable knowing that all of these "symptoms" are not my imagination.
For all of those who are currently suffering with hyper and hypo I say please slow down and try to relax your way through this ordeal. Here is the reason why----I have been on an emotional rollercoaster for more than a month now--I have Hasimotos dxed a almost two years ago--I go between hypo and hyper and can tell almost the minute I turn from one to the other-- I get palpitations, brain fog, nervous, panic attacks, muscle pains and the like. 10 days ago 4-5-01 I was terribly upset over something stupid and minor--I left the house in a huff and did some errands--well since I was in such a state I ended up falling and breaking my ankle--now I have that to deal with--can you believe it? Please, please take a moment to slow down and try to let these feelings pass before something happens to any of you---I am glad that it wasn't a car accident or something worse--as soon as I am healed I am going to find alternate ways to help the mind body connection (yoga, etc.) I cannot believe the mental toll this is taking on me--I can almost stand the physical stuff but I am normally sharp and bright and am turning into a blithering idiot--not being able to hold a thought long enough to make a decision etc. I go for blood tests next week and will insist that I take blood every two weeks so that I can keep track of the Hashimoto's--at any time it goes hyper or hypo with little or no warning.
If I wait to take blood every three months it is always too high or too low by then--
In closing, please be careful and try (although I know it is hard) to create a place where you can slow down and wait for the anger, stress, etc to pass.
Tree Frog, you have been a beacon in the darkened waiting rooms of endocrinologists and family practioners who for varieties of reasons, do not listen, do not care and certainly do not believe their patients. I too have been having a very very bad month, in out hospital 3x am on an anti/dep. not happy to be on it, one doc says up it, others says keep it, my system needs weeks at any dosage for any medication to work well/or/not. We are made to think we are crazy, even my female endo. did 7 dosage changes from Nov. to March and the E/R doctor said that's way too many. Yet the TSH (only Gosh darn # they bleed for) was normal. I am gathering my blood work copies and seeing for myself "where my numbers" lie. Added to my story is I"m type 2 diabetic where depression or anxiety is quite common and you got a pressure cooker ready to blow. I am on medication for thryoid, b/p, diabetes, now this anxiety, and have been pushing up my supplements. I have started to "re"walk outside now that spring is finally here, but there are some days it is hard to move out of the chair. My counselor for the depression notes I "seem better" and I've had to retrain my totally negative thinking into msgs to myself like "I will get better, I am a valuable person, " not quite believing it, but sometimes if one says something long enough it may sink in. The two authors TF mentioned are great. I wonder if Dr. Arem has contacts in other states that espouse his theories, do we know if that is out there? Other doctors?
Hang in there, we are not alone and for those tomorrow, Happy Easter.
This is my first post on this message board, but when I saw the list of thyroid disorder posts, I just had to say hello. Thyroid disorders run in my family, and I have been diagnosed as hypo...... I can't even spell it, but I have to eat every four hours, in order to keep my blood sugar at a good level, so that I don't feel sick..... I don't take any medication at this point, as the doctor sees no need yet, and he says that this is a mild case of the condition, however, in the past couple of years, I have begun to experience some violent panic attacks in public, whenever there are alot of people around me. Occasionally, I do not have the attacks, but I was wondering if anyone could tell me if you know if this may have something to do with a thyroid disorder, or if you have any similar cases, please email me, I am very scared, bacause I am generally a very healthy person, and I am frightened of having to take medication because I don't feel sick, and sick people take medication, but then again, I am sure that we have all been there.
Thank you Tree Frog. I have never been
to this site. but many things you said i can totally relate too. Not many people understand. I was just diagnosed last year with pseudohypoparathyriodism and i have spent the past year trying to get myself back together. the endocronologist has just put me on calcium and calcitriol tablets which have regulated my calcium levels.
The thing is i have also gained 30 pounds since being diagnosed. how did you lose it. some days i barely even eat. i just cant lose it.
I too was diagnosed improperly with practically every kind of depression under the sun, plus chronic fatigue and rheumatoid arthritis. But then they gave up and said i will just have to live with it. it wasnt until i went to australia last year i was properly diagnosed.
The problem i am facing now is that i am getting depressed again. What do i do? before being diagnosed i was on all the families of anti-depressants. I dont know what to do cause my moods are getting worse.
I have also noticed that there are all these fancy names of scans and other tests.
I had a CT Scan which showed excesses calcium deposits on my brain. But then they did an MRI and it showed nothing. So the docs thought i was making it up? I was stuck in hospital for 2 weeks becuase i couldnt walk? my legs were practicaly paralyzed. THey felt like rocks and i couldnt even lift them. yet it showd my calcium levels were fine? Any ideas????
Tree Frog, what a great idea to have everyone put their stories up!
I was diagnosed at 23, although I've had low thyroid all my life. I was pregnant when my doctor decided to test me because of my dry skin and large size. As soon as I was diagnosed I went to the library to find information as to why I had this disease. I received no pamphlet or info. explaining the disease from my endo. I found out any thyroid disorder has usually been passed on from a relative, not always immediate, and if one person is diagnosed, it's a good idea to have blood relatives tested as well. My endocrinologist didn't bother to tell me that either. I went to all my blood relatives to warn them to get tested. I found that the disease had skipped a generation from my father's side. I explained that if left untreated, this can kill. I distinctly remember warning my sister who had high thyroid symptoms about possible heart attack. My parents were tested, by not my sisters or brother. Two years later my sister who was 27 was in the hospital with a mild heart attack and the er doctors had no clue as to why. My mother mentioned thyroid and the doctor lit up. She had all the classic symptoms of overactive thyroid, but had never been diagnosed until my mother had to say something. Honestly, doctors and people do not take this disease seriously, as if it could never kill. Two years later, my sister was taken off her thyroid medicine, only to fall alseep behind the wheel twice. The second car accident nearly killed her. As for me, I've been on synthroid 5 years with no change, despite normal tsh levels. I came to this board because my first and formal endo treated me as if my still having all symptoms was no big deal, and I wanted to see if anyone else was having the same problem. Currently, I've been having dizzy spells for the past two years and am trying to convince my doctor that it's thyroid-related. I hope my story helps someone. Strawberry
Tree Frog: I have a lot of the symptoms that you stated. Last year I asked for a thyroid test and it came back "normal". Should I request a better test? I have been running 3-4 times a week for the past 3 weeks and haven't lost a pound. Have cut down my eating. I thought maybe my estrogen levels were too high due to the fact I went on the depo-provera shot in 1999 (normal weight level) and within 2 months gained 20+ lbs. Went off the shot less than a year later. But, my body still isn't back to normal. Not on any form of birth control but still think my estrogen levels are too high or could it be thyroid problems. Very, very frustrated. Any and all advice would be greatly appreciated. I have a goal to lose 40+ lbs and am giving myself a year to do it but, it seams I'm in a no win situations. Can exercising change thyroid and estrogen levels?
I want to tell my story here in hopes that it will help someone in some way.Just where to start??? Today yes that is a good place to start. I am Hypo I am currently on .3(2-125's mcg and 1-50mcg of synthroid. And my new endo has requested that I take prozac at 20mg which I am not sure how I feel about that as I belive that antideppresant "can be" harmfull to us. He wishes for me to lose this weight ha the weight the body pain the deppresion the emotional outburst the anxiety the emotional and physical greif the dementia yikes! that can drive us to feel as if we are crazy. I was always ill from my thyroid problems just no one ever put it together. Through my pregnancies i was ill no doctor ever checked my levels as a matter of fact I was ignored or put off even told things like if I smoked I would be ill too.
You need to see a mental health doctor (well with my past that was possible)I continued to have body pain, lethargia, vomitting upon rising ,chest pain, headaches, nausea, emotional outburst, tunnel vision, no hunger no thirst poor memory , stomach problems began constapation , hair thin , nails brittle hair begins to come out in spots, so tired I rarely coughed or sneezed .Weight loss, weight gain ,intolerance to heat to cold dizzy spells. numbness tingling, legs very heavy almost like there was weights on them. By this time I had forgot that as a child I was on some kind of thyroid medication. Also my intuitivness was telling me there was somthing more than my past child abuse and my insecurties and fears playing a role in the drastic changes I refused medications.Panic attacks, anxiety. unable to consentrate. I just trusted that there was somthing going on more than mental health and my emotions.(had tried to take my life) showing and feeling failure in many aspects of my life, personality changes.I really belived that there was somthing in my head test for thyroid disorder came back with in normal range (this can be dangerous for some of us)I was sent to another head doctor. Ha and she belived me and sent me to get a MRI ha I did have a tumor in my pitutary, area they call it a lipoma it is considerd non-cancerous at this time, but is considered a malignancy because it is in my brain. You would think someone would have sent me to a endocrinologist right nope, now I am treated even more foreign than before like some kind of odd ball. I was prgressivly getting more ill and so much was happening that I was unable to walk speak (oh they gave me loads of antidepressants (I was this or that you know Manic-depressant and so on)Developed full blown lupus symptoms, I belive this was related to the drugs that I was put on, but had shown simular symptoms as a child (immune disorders)
Milk leaking from my breast my weight had started out at around 112 had now soared to 208. I had a moon face hell I felt like I was no longer real at all that somehow I had become this thing that noone ever bothered to tell me I was not humane at all. Sorry if this is confusing and hard to read it just brings back so many thoughts and emotions.
I could not walk or speak did not desire anything.I lost my job, I had to leave school I could not parent my children consistantly. There is so much more, Maybe I should write it all down and give it to my new doctor it is hard to know I went through all that just to find out that all these symptoms could have been headed off by giving me synthroid and treatinhg me like a person not a thing. Now I am down to 186lbs. and I am leading a somewhat normal life I plan to make it a life that I call my own. I know that I will never trust my life to a Doctor on his or her own again. I will play an active roll in my health care as I have always but it is with the Dr's that we need to bring info to and if we can not get a resolution then we need to seek another and somtimes just giving them info that we find helps.I belive with all that I am that thyroid disorders are a serious health issue, left untreated by the health care profession. I belive that more serious time and money needs to be put into this issue.Today I strive for healthy conscience thinking and eating and drink the recomended amout of water.(which seems to have lowered my blood pressure) have had some cardic issues as well. I went from a healthier person to a medical nightmare and now I am seeking a way of health that makes me feel whole again, in doing that I seek a physical, emotional and spiritual combination to my well being. Thank-you for all of your stories.
Hello again, Tree Frog.
I'm glad your story was bumped up by the recent responses. I'm new to the board, but it has already been a wonderfully supportive experience! Thank you.
I'm wondering if your hair loss has been corrected by your current med(?). My hair loss and my weight gain have been the hardest things to deal with, I think. Sometimes, I feel like I just want to explain to people why I look the way I look (i.e., as if I have let myself go). I'm athletic, even though it takes all I can muster to start moving (I'm very often quite fatiqued). Yet, I continue to gain weight. I've been on Synthroid for over three years and the hair loss has only worsened. I seriously wonder if it is the drug itself. Hope you don't mind me asking about yours. I just know that there is hope out there.
Wow, sounds like what i'm going through. I have hyper/hypo thyroid, so I get a bit of it all. Hair falling out and breaking at the roots. joint stiffness, blurry vision, weight gain, weight loss, leggs feel like i'm wearing cement blocks when I jog, anxiety attacks, heart palpitations, tired, can't sleep, loss of memory, hungry,can't loose weight. When I get my T4 checked when I'm hypo it shows normal, but my thyroid is swollen and I gain gain gian weight, tired, depress. I tell the doctor I know it's not normal I know my body. Then I have it checked in 6 months it's over active, I loose weight, anxiety attacks, heart palpitations, can't sleep, talk too much. I have graves hashimoto diease. It's untreated right now I have no insurance. To top everything off I have asthma, so when I work out I have to deal with thyroid and asthma.
The following user gives a hug of support to updownthyroid: t_411 (12-09-2010)
Is there no one or place that could help you now before your disease progress?I would consider checking into places that would help. Doctors,health dept.,endo specialist,Hospitals,I seen somwhere(internet) that there are doctors and drug companies that help people.
I have suffered greatly in the past from this disease I would hope that somwhere, some how you can receive treatment.I do not want to offend you in any way just that I find this sort of thing sad and it touches my heart and the suffering i have had in my past.
Thanks, Tree Frog for your story and thank you CanadianMom for sending me here! I have had so many of the symptoms you all have described, yet my thyroid was tested a year ago and came back normal?? My current doctor refuses to do a hormone test (says I'm too young and it's probably not hormonal) Well, let me tell you, I am NOT too young, I am 46....I also had a hysterectomy (kept the ovaries) in 1996. I have read over and over again that women who have had a hysterectomy, with the ovaries left, enter menopause an average of 5 years earlier than those who have not. I have had unbearable back/hip pain for the last 6 months, before that it was shoulder pain for a year and a half....doctor says it is "probably" fibromyalgia. We did an X-ray of my lower spine which came back with a small amount of disk degenerative disease and myalgia??? Did an MRI which came back normal....how is that possible???? I cannot find a good doctor out here who will listen to me and my husband thinks I am crazy (thereare days I wonder, myself!) . I have been put on antidepressants, which I hate to take, so I stopped, I take Xanax .25 mgms 3 times a day for anxiety and panic disorder, Ultram for the pain and Zyrtec for allergies I have changed doctors 5 times in the last year. With my health plan when I switch doctors, it doesn't take effect until the first of the following month if you call in the first week of a month, or two months from then if you call after that. (For example, when I called on May 29th to change they told me it would not take effect until July 1st because I was not only changing physicians, but the medical group as well......I have not found one physician in this medical group who will listen, and like I said I have tried 5 of them...if I stayed in the same medical group, it would have been effective June 1) It's a real hassle in terms of referrals or covered services. I'm not even sure where to go from here......anybody have suggestions???