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Thyroid Disorders Message Board

Let's post our stories here. I will start with mine:

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Old 06-14-2001, 03:56 AM   #16
Join Date: Jun 2001
Location: New Zealand
Posts: 3
kiwichik HB User

I see these posts are a month old but I am new to these forums and find them really great. Im from New Zealand and can identify with a lot of what different people are saying. In particular a lady who said she was 46 and had had a hysterectomy. I too have had a hysterectomy. I was diagnosed with Hashimotos when I was about 19 and have been on Thyroxine (our form of synthetic hormone) since then. Im now 47. I was literally told my thyroid had burnt out. I have my levels checked six monthly and mostly they are within range but I do beleive a lot of my health problems over the years are attributed to this. I have joint problems and degenerative disc changes. I have had achille tendon problems with operations there and on my neck for a ruptured disc plus elbow probms as well. I too have anxiety attacks and mood swings, and anti depressants have never helped. I was a normal weight till this was diagnosed and now am overweight by 40lbs. I cant shift the weight no matter what I do. and I have talked to others with thyroid probs who seem to have this problem too. I have never talked to anyone with hashimotos though so it is great to finally find someone after all these years. My husband thinks I am cracked also. He is sick of all that goes wrong with me, I have had heart probs as well. Last test showed an enlarged heart. I also get palpitations and have learned to live with them....gosh I am rambling ...but it is great to read other people's stories, Chow for now, Linda.....aka kiwichik

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Old 06-26-2001, 09:56 PM   #17
Join Date: Jun 2001
Location: Lakeland,FL USA
Posts: 3
tinyteri HB User

I told my story in another topic , but will do it here too.
When I first showed these symptoms I was 18,
I was having anxiety attacks, weight loss, misscarriage(at that time thought to be from - blood) I was tested for HYPER and all of it came back "normal" I was told to quit drinking caffine, I too had depression and a fixation on death, my mom said I was morbid, i cried for no reason, got violently angry at the smallest things..I was a mess!!!
Well, anyway.. I chalked it up to caffine and went on feeling this way only it got worse, at 25, with memory loss, cold chills, low temp, sinus conditions, i also had arthritis at 25! and still the doctor tested me as HYPER because i was so thin, i started getting tired by 2pm every day(even still) At 32 i developed severe strep throat and had lumps in my throat, very noticable ones, i couldn't even swallow water! so off to the Doc i go.. and he sees these lumps and... whoa... he had a cow!
But still, tested for HYPER and guess what?
I turned out to be severly HYPO! my count was a 31.7 this Doc really got on my case about seeing an endo right away, said I was lucky not to be in a coma! He went so far as to call me 3 days later to find out if i had made an appointment! I went to the Endo and he started me on the lowest dose of levoxyl...that was a little over a year ago (may in fact), i have switched 3 times, I still am not leveled off, I recently found out that my count "bounces" up because of stress, this was very important to know, I have 3 kids, a husband who has been with me since i was 15 (no not married that long) I feel bad for him because he honestly thought i was going crazy and he still stood by me. My lumps were biopsied and the doc didn't like the boarderline results so he shipped them to Mayo clinic, where i am happy to report that they said i had lumpitis thyridist(lumpy thyroid) hahaha, 3 weeks of thinking i was gonna die I am still not better at all though, the tsh levels are down but i am still suffering all of the symptoms.. If anyone knows what else will help the symptom side of this..let me know cause i am tired of being tired and crabby and nuts! Thanks for reading this.

Old 06-27-2001, 05:19 PM   #18
Junior Member
Join Date: Feb 2001
Location: PA
Posts: 27
fibrobabe HB User

My 2 small children are watching me cry while reading your stories. Well, here is mine. I hope someone can help me.
In January/1999 (3 days after giving birth to my 2nd child) I started to experience what I thought was baby blues. I cried all day. That night I told my husband. I had left the dinner table so as not to cry in front of him. I went downstairs & cried & then a weird tingling feeling came over my body & started shaking. I thought I was having a nervous breakdown. I called my doctor right away. He said he couldn't give me anything since I was able to take care of the baby and I should call the office in the morning for the # to a support group. That same night, my mom called. I told her I thought I had post-pardom depression. She came right over with a xanax. I took it & within 10 minutes I could just feel the tears dry up & I never cried again. However, I went to bed & shook all night. I wasn't cold but felt the need to bundle myself up to make me sweat. Once I did, I stopped shaking and was able to fall asleep. That didn't last too long. Every hour I woke up because I had diarrhea. Because was unbundling to go to the bathroom, I would start shaking again. This went on all night. In the morning, I called the doctor's and told them what happened & lied & told them I had a fever so they would see me. When I got there, they took my temperature and it was 97.1. They didn't think anything was wrong until they opened my gown. The found out both my breast were severly infected. They gave me an antibiotic. The second night, it started again but it wasnt as severe and it only lasted about the first 3 hrs after going to bed. Each night it got less and less until about 6 days after it was gone. My primary doctor says he thought it was just the way my body reacted to the infection. I bought it.
January 2000, I get the flu and bad sinus infection. I was on and off antibiotics for 6 months. The infection wouldnt go away. June/2000, my kids had a stomach virus later that week I got it as well but much worse (along with my period). I was in bed for 4 days. I had stopped the anitbiotics the week before. On the fifth day, i put the kids to bed & got a shower & sat down to relax. All of a sudden, the feelings came back. Alot of people say they sound like panic attacts but I didn't want to beleive them because I was not that kind of person. I'm still not sure they are panic attacts. I ran to bed hoping if I could fall asleep, it would all go away. I got very dizzy when I laid down. I got up and went back down to wait for my husband. I assumed it was the sinus infection. That it was too out of control and my body couldn't handle it. I called my doctor, he thought the same and gave me another round of antibiotics, this time with antiverts for the vertigo he thought was brought on by the sinuses. Again, after a few days of antibiotice it went away. A little less each night.
November/2000 my kids had a stomach virus again and thanksgiving night I got it too. I got my period and a few nights later, again with the "possible panic attack" but it was bearable this time. The tingling didnt feel like it was in my brain this time but now I started with the neurological symptoms, cold, numb, or tingling feelings in only certain parts of my body (ex: one arm, my knees, a stripe down one leg). I thought i was getting a sinus infection again & assumed that was the cause. the cat scan came back showing no infection. I told my symptoms to the ENT and sent me for an mri. My brother has MS and they thought i should be check for it. It came back negative for MS but they thought I had a stroke. 2 neurologists said it wasnt a stroke but a UBO (undentified bright object). In the meantime, my left side went weak, I would pick something up and my muscles would cramp up, aches and pains in my muscles and joints. I was then diagnosed with Fibromyalgia. I wasnt convinced. It seems to come to easily to the doctor. i wanted to see a rheumatologis then, and he said he didnt like being second guessed!!!! And that I tried to dupe the system by seeing "2" neurologist. Well the rheumatologist says I have a lot of the symptoms of fibromyalgia but other neurological ones that dont fit with it. He seems concerned with the ms since my brother has it. I asked about the thyroid and he said "the test shows it was normal". then he looked and said it does look and feel full and wants me to have a scan done.
Thanks for hanging in here with me. I have the tendency to ramble (as you can see). I just need to get this all off my chest.
Here are my symptoms over the past 7 months:
possible panic attacks with total body shaking after, in winter i had feelings of not being able to get warm, that stopped, now i have hot flashes, recently severe hot flashes with tingling from head to toe with diarrhea (one i go to the bathroom, the hot flash stops but then I start shaking), nervousness, pain in forearms that goes to pinky and ring finger, joint and muscle aches/cramps, menstral cramps almost all the time, just not feeling right/normal, more hair than ususal coming out (especially in shower), tingling on underside of hands and feet when I touch something, chest tightning/pain for 6 months straight (only went away when I took vioxx from rheumatologist), one month i had bleeding in between periods for first time in my life (they put me on birth contro with has helped with hot flashes except when I have my period), left arm goes weak and pain goes from shoulder to fingers, back of scalp i s numb and tingling, itchy, dry eyes, coldness over parts of body. I think that's all.
I appreciate your time. I can handle the pain, numb, tingling feeling. Its the possible panic attacks, hot flashes, and nervouseness I cant. I am 32 years young and i cant think of living the rest of my life like this. thanks for listening, sorry so long.

[This message has been edited by fibrobabe (edited 06-27-2001).]

[This message has been edited by fibrobabe (edited 06-27-2001).]

Old 06-27-2001, 09:55 PM   #19
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Join Date: Jun 2001
Posts: 104
blondegal HB User
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Hello everyone. I just discovered this site and decided to check out Thyroid Disease . . something that I have been diagnosed with for 30 years. As I have just read all of your stories it takes me back to a darker time of my life when I was a very young woman and very subtle changes started occuring. I felt something was wrong but it's very hard to figure it all out when it's happening so gradually. I never had a lot of the classic symptoms and then some of them I definitely did have. I found it very difficult to function as a new wife and mother at the age of 19. I absolutely felt like I was heading for an institution if I didn't find out what was going on with my body. I LOST weight and with hypothyroidism that is a little more uncommon, but I could not eat normally. Food was my enemy because I felt like it would turn me into a bloated toad. My monthly cycles completely stopped and all my feminine curves disappeared. My new mother-in-law was very cruel and said she believed I was turning masculine because my hormones became very out of balance but it is something that is very worrisome to a young woman when her sexuality is being attacked. She is the type who spreads mean gossip to all those around her so I became extremely paranoid and actually was frightened to death that maybe I was weird sexually. My daughter was sort of left out because I did not have the energy to even talk to her and she was just a small child - so unfair this was to her. I barely had the energy to take care of the basic necessities, let alone excel at motherhood! She did not realize at her young age that her mother was sick. Mostly, I have to say that it was my hormones and my emotional state that sent me rushing to an endocrinologist for the standard blood tests that indicated hypothyroidism. He said my hormones should be working together and they were not - when one is out of balance they can all become fouled up. I started on a gradual dose of Thyrolar, at that time, then worked up to the level that eventually helped normalize my thyroid levels. It took about three years and several different medications and dosages but finally my energy returned, my periods returned, my dry skin got much better and I felt emotionally stronger and able to become a mother to my daughter and a wife again.

Luckily, today there is so much more available to read and easier to research a health concern than it was 30 years ago when I was in such a frightful state. Thyroid disease affects so many functions of the body but how prompt mine responded to the medication thanks to a very good doctor and a little patience. Thanks to all of you for sharing your stories with the rest of us and certainly, I wish I would have had this site years ago when I was struggling with my disease. Best wishes to all.

[This message has been edited by blondegal (edited 04-07-2002).]

Old 07-12-2001, 06:51 AM   #20
Angie E
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Join Date: Nov 2000
Location: TX
Posts: 34
Angie E HB User

Well, here's my story. I am 5'5" and I always weighed about 125-130 lbs. Well, while I was a sophmore in college I had a really bad case of the Tawian flu that was going around. It was after I recovered from that, that I noticed things started changing. They were very gradual, so I just figured I was being a wimp and was very hard on myself. I started having massive diarrhea. I attributed it to working two jobs in college putting myself through, and school work. I started putting on weight, just a little every year, but I was so busy, I never weighed.

I had always had problems with my periods from the time I was 10 years old. They put me on birth control pills at that time just to stop the bleeding. I remained on them and they quit working when I was 16. They wanted to give me a hysterectomy, but finally found a pill strong enough to stop the bleeding. While I was in college, I went to a specialist and was diagnosed with severe endometriosis. So everything that I was feeling, I attributed to endmetriosis.

While a senior in college, I had surgery, graduated college, planned a wedding and moved to a new town all in 4 months. I just knew that my fatigue was due to being burned out. I graduated in 4 years, going through the summers as well. The day after I got married, I weighed and was astonished when the scales read 160 lbs! I cried for days. Gradually, things got worse. This was in 1988. In 1991, I hit a big wall. I started passing out between meals, then started losing weight at 10 lbs a week. I was thirsty all the time, hot, sweating and shaking so bad I couldn't write a check. I was tired all the time, slept 4 hours out of every 72, started hallucinating spiders on the ceiling and had severe vertigo where the whole room was spinning. I had to do basal body temperature tests for fertility and my temperature when I woke up every morning was 101. My OBGYN accused me of not doing it right, but I was. And I couldn't get pregnant to save my life. I was mean, and I just don't mean irritable. I mean vicious. And I knew I was being vicious, but I couldn't stop it. It was like having PMS multiplied by 10. At this point, I was on treatments for endometriosis for a while and before that, I had been on fertility drugs. So I attributed my moods to that. Well, when I started passing out between meals, my now ex husband said, "You know that's not normal don't you?" SO I went to the dr. thinking I was hypoglycemic. He said possibly and did a blood test for thyroid. I didn't know he tested for it. He did check my pulse and had a strange look on his face. The very next day, he called me himself and said go to this endo immediately. So I did and he tested for Graves Disease. Sure enough that's what it was and he said I had a really bad case of it. He immediately put me on PTU and straight Iodine. He also put me on Inderal, a heart medication. I was twenty-five years old. The heart medication slowed my heart a little. My resting heart rate before rising every morning was 110. (I started taking an aerobics class one time and I couldn't find my pulse. The aerobics instructor timed it for me, looked strange, and said do not come back until I see a dr. I just attributed it to being out of shape and that I was a wimp) Anyway, they told me to stop trying to get pregnant or that I could die. My dr. recommended surgery, so I did. My surgeon was very worried that I would have a heart attack on the table, so he made me promise I would take my Inderal before the surgery. I was in surgery for 4 1/2 hours. 4 months later, I was pregnant. My OBGYN still says it was the endometriosis, but you know how dr's are. As a fertility specialist, he should have picked up on it immediately, with the high body temperature, shaking hands, irregular periods and not being able to get pregnant. Not once did he do a blood test for this. Anyway, I've been on medication and have had many ups and downs with dr.'s and my medication. After having my son, I started falling asleep in Whataburger, and I had no reflexes. My primary care dr. put raised my synthroid from .125 to .2. Then he killed himself. So, I was able to stay on .2 for a while, got pregnant again (I was now a fertile mertle). After my daughter was born, had to find another primary care doc since mine killed himself. This one dropped my Synthroid to .175. Then he dropped it again to .150. This is where I had been until recently. I kept telling him that I was hypo and he said my tests were normal. So I have gone to 4 more dr.'s trying to get them to listen to me. At this point, I was cold all the time, my hair was falling out, skin peeling on hands and feet. So, my current dr. believed me. I told her I was feeling hypo, my symptoms and she said that we needed to do a free T3 and T4. I had never heard of them. My tests came back that my TSH was 3.14 (normal) but my T3 was not. So she upped me to .175 for the next year and I feel great. Sorry this is so long, but as everyone here knows, the process is very long because the symptoms are so gradual. And most of us are apt to blame ourselves, we are lazy, weak, wimps etc. And it doesn't help if our significant others believe that of us as well and reinforce our negative feelings about ourselves. I now feel absolutely wonderful! I haven't felt this good in years, so finding the right dosage can happen, it just takes finding the right dr! (and the right husband!) I don't trust dr.'s either. But the one I have now is great. I read somewhere that if you are having problems with your dr. go to a DO or a holistic dr. They treat the whole person and go by how you feel and not necessarily by blood tests. That was going to be my next step if this dr. didn't work out. But she's really great. If you are in the Dallas/Fort Worth area and need a great dr., her name is Dr. Karen Spetman and she's in Willow Park. She's wonderful!

Angie E

Old 07-17-2001, 05:55 PM   #21
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Join Date: Jul 2001
Location: Cordele, GA
Posts: 47
blessedtwice2001 HB User

I was hyperthyroid in 1971. By the time I saw an internist, I weighed 104 and the only symptoms left to have were budging eyeballs and fatal heart. I was 22 at the time. I took medication three months and it corrected it. Over the years, due to complaints of fatigue, depression, weight problems, sexual dysfunction and more a thyroid panel has been done periodically.

I have a history of viruses (including Epstein Barr and Cytomegalovirus). I have allergies, headaches, sick adn tried feel most of the time. I have been diagnosed with Fibromyalgia (2000), CSIDS (1995) Atypical Connective Tissue Disease (1996), Hashimoto's thyroiditis (1997) and somatizaiton disorder in 2000.

I have Restless Leg Syndrome, Carpal Tunnel Syndrome, Obsessive Compulsive Disorder, depression, moderate spinal stenosis, hypoglycemia, psoriasis, very unhealthy nails which raised from the nail bed and literally came off in 1997, insomia, sexual dysfunction, intermittently high blood pressure, chronically high cholesterol, stomach and digestive/irritable bowel problems, candidiasis, obesity,.

It has taken years for all these things to manifest themselves enough for anyone to take me seriously. In late 80's one doctor recommended I read "Love, Medicine and Miracles" only made me feel worse because I couldn't "think myself to good health". I later told him this and he helped alot with my case in the Class Action Law Suit/Breast Implant after he considered all the things that I had complained off, all the things that had since been found and after I told him how he helped to make me more depressed.

I have had all kinds of tests, scans, MRIs, bone density, bone scan,
EKG, Stress Tests, Endoscopy, Colonoscpy, EGG, IVP, Sigmoidoscopy,Meridian Stress Assessment, Comprehensive Digestive Stool Analysis, sonograms. Due to applying for Social Security Disability in late 1999, I had to undergo a psychological evaluation and a Residual Functional Capacity.

I don't know if I have listed everything or not, but you can see that I have been going to doctors for more than 20 years with symptoms. Friends and I am sure family thought I may be a hypochondriac at times. I was the super-mom type....worked fulltime, active in church, home, school, extra-curricular, PTA, etc. I did my own housework, cooking, I wasn't lazy nor was I a hypochondriac.

I persisted, wrote letters, kept a diary, listed my symptoms and updated them as more diagnoses were made. I always took this most current information regarding my symptoms/complaints/diagnoses, surgeries, tests, and medications to every doctor I saw.

It has been difficult. By the way, I was approved for Social Security Disability one year after applying...probably a record (greatly due to my good record keeping learned as a Secretary/Administrative Assistant.)

Right now, I am back under an endo who is more concerned with my high cholesterol than my thyroid. I truly don't think I am adequate treated although the numbers are in normal range, but it could be that I am sick and tired much of the time from my other problems. They overlap so, it is really discouraging to know what is causing what and what needs doing for me.

Thanks for the opportunity to share. I doubt this will do anything other than show persistence does pay. I learned that at 21 and 22 when everyone thought I couldn't be sick.. I almost died with hyperthyroidism and ever since have been keenly aware of my body and how I feel. I KNOW when I am not feeling well mentally, physically and emotionally inspite of what anyone else, including docs, think.


Old 07-22-2001, 01:30 PM   #22
Join Date: Jul 2001
Location: Deltona, FL USA
Posts: 3
Jennerizer HB User

Hi all....I'll keep my story short as possible. I am 32....was diagnosed with Graves disease when I was 7 or 8. They didn't know what to do with me, it was unheard of children that young having Graves disease & there is no history of it in my family. Put me on inderol & some other meds until I reached 16 & then decided I was old enough for the radioactive iodine treatment. Dr. overdid it & I became hypo. It's been a pain dealing with it over the years & having to change doctors because of changes in health insurance. I also developed pernicious anemia (can't absorb vitamin b12 naturally anymore, have to get b12 shots)...which is another autoimmune disease. If any of you are lacking energy even though your thyroid levels are normal, get your b12 level checked. It can be connected to thyroid disease.


Old 07-25-2001, 07:48 PM   #23
Join Date: Jul 2001
Location: Canada
Posts: 1
beaker HB User


When i was about 8 my mom noticed a lump on my throat (funny she didn't think anything about my bulging Anyways, the doctors wanted to operate and due to the side effects of this, my parents said no. The doctors then told my parents that since they declined the operation they could no longer treat me. No one told my (European barely speaking English) parents that i needed to be medicated.

So things went along and i switched from hyper to hypo..the goiter went eyes went back to normal....and everyone was happy.

Flip forward to age 21. After years of sleeping for long long periods of time, i started having fainting spells, vertigo, panick attacks. It scared me enough to go to my new doctor (old passed away) yet again. I was always in there for being tired, not able to lose weight. I was always told it was in my head. Then i had a vertigo spell at work and one of my co-workers asked me about it. She suggested her doctor saying that she found the doctor to be very helpful, innovative. So i switched docs, had one appointment and in two sentences was being ushered to get my thyroid tests done.

From that time on (15 years ago) i've been on Synthroid. My doses have had to be increased a few times. I always knew due to an increased level of exhaustion and lack of ability to exercise.

I recently started having the same and decided enough was enough. I have never felt "really good" since about the age of 29. So, off i went to the net to do some research.

I did my research, came up with what i wanted, went to my doctor and educated her on different thyroid drugs. She had me do new tests, researched on her own while my tests were coming back and agreed to change me from Synthroid to Thyroid (which today was my first day on the new med).

I'm very happy that i have a doctor who listens and is willing to do something that benefits their patient.

I felt wonderful today for the first time in about a month. The exhaustion lately has had me beat. I know it's only the first day, and each of us is an individual in their reaction but i certainly hope it continues like this and to improve.

I hope that everyone reaches the appropriate medication levels to let them have control of their lives again

Old 08-08-2001, 05:38 PM   #24
Join Date: Aug 2001
Location: aberdeen,Md usa
Posts: 3
pennyzoo HB User

Hello all,,,It's been so educational to read from and learn from everyone's postings. Special thanks to Tree Frog for doing this post, and replying to the other posts on this board. You are a huge resource...

Here is my story. I started having headache's that centered in the back of my head about 1 month ago...went to the Dr to request a CAT scan (I have a family history of anyersum (spelling?)....well the scan came back normal..but my blood work did thyroid came back hypo and my cholesterol was high (275) the dr took another blood test specifically for thyroid to double check the first test...came back 2 points higher at a TSH or 9.61 and t4free of .86("normal")...and triiodothyronine of 2.7 ("normal")so she said, you should go on a small dose of thyroid medicine because you are hypothyroid....well, I new zip about the thyroid/ I rushed home and got on the internet and started to learn..and got scared!! Holy cow! I'm so glad I caught this early...I am 29yrs old, female, just had a baby 1yr ago...(my Dr thinks my difficult pregnancy and delivery caused my thyroid to go out of whack) I am now on 25micrograms of levoxyl..from what I've read that is a low I set up an appointment with an endo in far the symptoms of hypo that I have are: carpel tunnel,hair loss(minor),headache(I think this is a symptom),and occasional vertigo....I also haven't been able to loose about 25more pounds left over from my pregnancy...(I was 205 when I was pregnant, usually am I am 150!)'s to hoping the meds work,and to a great endocrinologist...


Old 08-09-2001, 11:23 AM   #25
Join Date: Jul 2001
Location: england, uk
Posts: 9
piggles HB User

reading all of your stories has helped me so much. Thank you! I started getting my symtoms about 12 months before my son was born (weight gain and knee pains) after he arrived 2 years ago everything went mad. Weight has piled on, behaviour is irrational, either completely down or on a high, a weird stomach thing (very bad cramps that come on suddenly followed by, well lets say it's not very plesent) hair lose, broken nails, no labido, I'm so tired that I'd cry if I had the energy. You get the picture, the list goes on and on. In a way I thought I was lucky - my mum, sister and paternal grandmother all have thyroid conditions so I had a fair idea of what I could be looking at. I went prepared to the doctors with my list of symptoms, he did a thyoid test but it was 'only a bit low' so diagnosed depression instead. I've seen other doctors, one only this week, who still don't seem to take this seriously. I've had more blood tests all of which say the count is low, the last one also showed anti-bodies of some sort, but the doc didn't explain what that might mean. The pain in my knee has recently become so bad I've been refered to a rheumetology unit to see if it is arthritis. The consultant there doesn't think it is, his suggestion is a thyroid condition and off I've gone for another set of tests. Sorry to be so long winded, hope I haven't bored you with all this, it's just good to get it all said, especially to people who understand. I'm going to keep pushing to try and get the help I need, but sometimes it just seems too hard, I'm too tired for the constant battle of trying to get some one to believe me. Well that's all. Again- thanks- for your stories they give me hope for the future.
Piggles xx

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Old 08-10-2001, 12:53 PM   #26
Junior Member
Join Date: Aug 2001
Posts: 24
TiredandWeary HB User

Hi everybody! My name is Diana, my friends call me Dee, and let me start out first by saying that I'm new to this forum, but am very thankful to have found such a place, where others with similar probs can share in their experiences, and be there to support and help each other. Thank you so much!
My story begins like this.....I was around 19 years old, when a guy with a loaded 32 pistol beat me up and stole my car...and left me stranded at my house which had no phone, in the dead of winter. I had bruises in several spots on my face, and neck, and needless to say my nerves had had it! I walked about a mile or 2 in the snow downtown to my friends house where I could call the police station and report him. Once my mom picked me up to take me to her house, I was such a nervous wreck that I could not sleep, and I had broken out in a nervous rash all over my body for three days straight. I even tried nerve pills but I couldn't sleep or anything of the sort. My mom suddenly noticed that my neck was rather swollen and she asked if he had grabbed my neck in the midst of all this. and I assure her that he had not. Mom's motherlaw had a home care nurse that came to her home everyday so we went there to speak to her, and she said, that I appeared in her oppinion to have a thyroid problem, and that if you have thyroid problems in your family's history, that it can be hereditary and that a traumatic experience can bring it out early. Well come to find out, I have had two aunts, and my grandmother who all had thyroid probs, and now my mother has been diagnosed with a hyperthyroid disease.

Well, to make a long story short...I am now almost 26 years old, a newlywed, with no children, who has been diagnosed by three different endocrinologists as having Graves disease, a form of hyperthyroidism, and am on the WORST emotional and physical rollercoaster ride of my life! LOL And my poor new hubby is having to put up with me through all of this lol. Although he's soooo understanding and supportive, as he is 45 and was diagnosed with thyroid cancer years ago and knows exactly what kinds of things I'm going through.

Anyway, right now, I have started seeing a new doctor, since the others seemed very ignorant in my oppinion, and this doctor seems very knowledgable, and very nice, and patient enough to listen to how I feel, etc...unlike the others. but my problems now are different,....Just as I thought they were getting my levels lowered and straightened out with the Tapazole and atenolol....the have cut my prescription in half, and I don't know why....but I am now having muscle cramps, and really cold chills to the point where I feel like I just can't get warm at all, and I am normally so hot that I freeze everyone out, LOL.
has anyone else experienced these muscle cramps? I am only 25 years old for crying out loud, and there are some days I feel like I don't even want to get out of bed!! help! LOL
I have a doctors appt on Monday, but I can't even run out to the store for 5 minutes feeling this way, it's awfull! and I drive 5 hours to get to my I'm not even sure I'm up to the trip, although I have to.
Any suggestions??? please? I'm desperate, LOL.

Old 08-16-2001, 10:04 AM   #27
Join Date: Aug 2001
Location: UK
Posts: 0
tiggermum HB User

Hi there folks. I only found this website the other day, and have posted on other topics - not this one. My story is similar to all others - I went to see my doctor in April 1998 when I suffered pain in my neck and had a large swelling at the front. My gp examined me, and told me to go home, stop being silly and get used to it. He told me to live with it. I worked at that time for lawyers (not very good ones - but lawyers all the same) and I contacted one of the Consultants we knew who was appalled. He told me I needed to see an endocronologist and I rang round and found one (privately not on the Health Service as this would have taken about 12 months to get an appointment). I saw the consultant, and she sent me for a scan, followed by other tests. After four or five visits, I saw a surgeon who suspected I had cancer, and performed a biopsy there and then. Luckily it wasn't, but I was in hospital by July 1st 1998 having one half of my thyroid removed. I was really ill after that one. I went through the usual tests for the level of thyroxine to take, and carried on as usual. 12 months later another swelling appeared, and I saw my consultant straight away. I was in hospital within a week, having the second half of the gland removed. Since then, I have had six month checks for levels, and my dosage has fluctuated all the time. My mood swings are awful, my sex life is awful and sometimes I just want to not be around any more. I have two kids, a daughter of 19 and a son of 17, and my husband (second one) is trying to be understanding, but sometimes it is so difficult to let him even cuddle me. I have been put on anti-depressants and now have been given progesterone tablets because my periods are too often. The tablets have indeed made them more regular - now 29 days but I suffer more with pains, and cramps and am in agony. One day every month I can't leave the house. I'm seeing the doctor again on Monday in the hope that he will do something. I never knew until I tried searching around the internet, that all the problems I have now, and have had in the past could all be down ot the problems with my thyroid. I have found a lot of comfort from the messages on these forums, and from the people who write. I feel they are now my friends. I may now know you in the true sense of it, but it is great to know you are there.

I would say to anyone who is being fobbed off and told to go away and stop being paranoid, to keep pestering the doctor. The doctor has a duty to help you. At least they are a starting point.

I am going to New Zealand for a month in January, and have to sort myself out by then. I have given up work because I could not cope with the stress, and am trying to get my life back - or rather find a new life that suits me now.

I will keep you all posted. Please keep writing. It's so good to read all the messages.


Old 08-19-2001, 06:02 PM   #28
Join Date: Aug 2001
Location: Sarasota, FL USA
Posts: 6
SandyC HB User

I am new to this board, and have enjoyed reading all your stories...I have just recently been dx with Hashimoto's ...I have been sick for about 3 years now, gaining weight, dry skin, hives, numb fingers, toes, toenails growing in-up-and around!!! Blue fingertips, insomnia, water retention etc etc etc...For three years, all my blood work showed normal including an MRI of my pituitary....but not giving up, due to a fantastic OB/GYN I saw an Endocrinologist and finally after 3 long years, my TSH was 0.07 and my Perioxidase antibodies were at 70 (should be negative numbers). One month later, my TSH was 15 and along with other abnormals like high testosterone, insulin, cortisol (no longer high though) dheas very high etc etc....I was dx with Hashimoto's - hypothyroidsim....I was on Levothroid .5mg and now been given Levoxyl .10 mg as my TSH was still too high at 11 - (down from 15 though)....I am feeling a little better but far from normal!!!!

Thanks for this great board!!!

Old 08-19-2001, 06:39 PM   #29
Junior Member
Join Date: Jun 2001
Location: san antonio TX
Posts: 14
Miller93 HB User

Hi everyone! I started experiencing panic attacks about 15 years ago. They started to get worse so I decided to go to MD in 1998. He tested my thyroid, TSH, and since it came back within range, 3.3, he said I was normal. The attacks still continued off and on. Then in Dec 2000 I had my second child. Four months later I started to get depressed and thought I was post-partum depressed. My hair was falling out, my skin was very dry, lack of concentration, very irritable (RAGED, is more like it), stress and inability to handle it. My husband said that I needed help, and I told him he was the one that needed it-he WAS the problem. After seeing the woman in Houston sho suffered from PPD I decided I better get myself checked out. I went to another great MD in June of 2001. I told him my symptoms and he was smart enough to check my TSH level. It came back at 8.2 so his office called me back for appt. right away. He started me on .05 mg levoxyl. He had also given me paxil at the first appt thinking it was depression. I didn't want to take it, and haven't yet. He told me that the med level might have to be adjusted. And the hypo that I had was very common. He knew exactly how to treat. But I took it upon myself to go to an endo specialist to find out more about this condition. This was 4 weeks after the MD visit and after starting med. He sent me for another TSH, Free t4, antibodies, and sonogram. The sonogram came back normal (Thank God!) My TSH was now 4.9, t4 was within range but my TPO antibodies were 70. This means autoimmune. He kept me on the .05 levoxyl . Then last week I went back for results and he upped the med to .075 mg. And wants to see me back in 8 weeks, to retest TSH. He wants my TSH at .4 level. He said that I should start to feel more energetic and that I should start an exercise program of weight lifting to build muscle and also low carb diet, more protein. My symptoms now mainly consist of some muscle cramping, some insomnia, still irritable some, weight gain (which is plateau), frequent urination, water retention, a stomach from pregnancy that will not go away!!, still have some lack of concentration, and some bone aches. I do not feel like I should, but am working on it. I asked endo, MD and gyn if this is related to pregnancy. They all said no. It takes a long time for this to progress. So it will take a long time to get back. If I get there, huh? But I do feel sooo much better than the day that I went into MD thinking I was post-partum depressed. My husband and kids think so too. I am very thankful that it was discovered and I am on the road to getting better.

Good luck to all of you!

Old 08-29-2001, 09:16 AM   #30
Senior Member
Join Date: Jan 2001
Location: Brooklyn, NY
Posts: 190
ArtfulD HB UserArtfulD HB User
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Hi All. I guess my story will be this week's bump. I have to warn you, I'm long-winded….

I've had depression, migraines, and sudden anger all of my life ("born angry"), with the various symptoms that doctors like to say are "just in your head."

I've always viewed my body as a bit of an experiment, as it seemed to do interesting things since childhood (palpitations, unexplained aches and pains, mood swings, constant throat and ear infections, etc.). Dad's a physician, so I always had access to lots of information and Mom told me to stop paying such close attention to the trivial. I always felt I was a bit of a hypochondriac for noticing things others never mentioned. It never occurred to me that I was the only one with the symptoms.

At age 19, I was put on 0.1mg synthroid for PMS, and various meds plus a special diet for migraine (daily calcium channel blockers & aspirin, boosted with beta blockers and pain pills as needed). My immune system was weak by then, and I would get severe cases of the flu with each change of season. I always attributed the migraines and illness to being an over-achiever but didn't stop pushing myself. I had a lot of brain fog, but it seemed to be a by-product of the migraines. My T4, T3, and TSH levels (checked frequently) were always normal, so thyroid disease was never suggested.

The synthroid and migraine meds continued until I was about 25. By then, I'd mildly overdosed on every pain med known to man and was taking pills for the side effects. I switched to naturopathy in conjunction with western medicine, and slowly weaned myself from all the prescriptions including the synthroid. It never seemed to help the mood swings anyway. Of course, I was never asked about my other typical hypothyroid symptoms (cold hands and feet, muscle ache, chronic fatigue, tingling, hoarse voice, increasing inability to think clearly, etc.).

I spent a few years of playing "stump the homeopath," with some short-term successes. The symptom that concerned me the most was the sudden total loss of libido and revulsion to being touched (even on the arm) and I spent several years looking for answers. Then, at age 34, my OB/GYN noticed a lump in my throat and urged me to see an Endocrinologist.

Blood tests revealed Hashimoto's thyroiditis (very high thyroid antibody levels) and an FNA biopsy showed abnormal cells. Within a week of my first exam, I was expected to deal with a cancer diagnosis and set a surgery date. Fortunately, I found this and other websites that explained everything from diagnosis to treatment options. And, as my uncle (an oncologist) says, "if you're going to get cancer, this is the one to get." He teases that thyroid cancer is the only one that doesn't impact your life insurance premiums.

I took a step back, saw three surgeons and had a few heart-to-hearts with my acupuncturist. The acupuncturist felt certain he could help repair all without surgical removal, but second and third opinions from other acupuncturists and homeopaths were less confident about a naturopathic approach. I was uncertain I could heal myself due to the stress it would cause my physician-heavy family (and, therefore, me) if I didn't remove the cancer. So, I plunged.

My surgeon was wonderful. I really wanted to keep some of my thyroid if possible. He felt there was less chance of recurrence if he did a total removal, but he agreed to remove the side with the lump first, wait for the freeze biopsy results, and only remove the other lobe if the biopsy confirmed cancer. As it turned out, I had three types of abnormal cells (not just the one shown on FNA), so the cancer was quite a bit more aggressive than is typical. They took the whole gland.

I was permitted to use homeopathy in the Recovery Room, as well as in my hospital room post-surgery. My once-compromised immune system healed surprisingly fast (I felt ready to go back to work the next day, but waited through weekend). And I was fortunate that the follow-up Radioactive Iodine was similarly easy for me. I brought an electric kettle into the isolation room (along with instant soups, teas, and high-protein snacks), and drank gallons of hot/warm water to flush out the radiation in record time.

It takes quite a while to stabilize thyroid levels; particularly since you need to wait at least two months between dosage changes so that the medicine will assimilate in your bloodstream for an accurate reading. I think I felt best at 0.125mg, but am still tweaking. My Endocrinologist is very old-school and insists on synthroid only, but he is extremely well-respected by all the lab techs and nurses I've dealt with, so I'm hanging in there.

I've had a lot of success minimizing some of the more severe symptoms with acupuncture (particularly fibromyalgia) and "glandular balancing" (a hands-on treatment by my chiropractor). And yoga is extremely helpful with the migraines (as well as my body image).

I wish everyone out there the strength and persistence to heal themselves. Listen to your bodies -- they don't lie.

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