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Old 09-04-2001, 07:41 AM   #31
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Hi. I am new to this board, but thrilled to find a place where I feel like I can share my problems and experiences.

I found out that I was hyperthyroid when I was thirty-eight. I should say officially, since I think I had some thyroid problem after my child was born when I was twenty-eight. I felt horrible. Didn't have any interest in anything, bloated, gaining weight, excessive tiredness, etc. Doctor suggestion I go on some kind of anti depressant. I had a baby to look after, so didn't want to be drugged all the time just to get through the day.
Things eventually seemed to level out and I improved where I was able to function like a NORMAL person. My periods were horrible since I was eighteen and continued that way for years. It was like having a stomach virus every month with horrible pain. I thought everyone had this problem. Doctor put me on birth control pills, which did help.

When I was thirty-eight, I again felt something was wrong. I was so tired that I had trouble walking. My hands were so shaky that I couldn't do anything. I went to my primary doctor thinking that the birth control pills I was on needed to be changed. He took one look at me and decided that I had a thyroid problem. He referred me to an endogronigists who confirmed his diagnosis and immediately put me on inderal and tapazole. I had, by this time, lost about fifteen pounds. I wasn't seen for a week and by the time I went back to him I had become hypo. To make a long story short, he over medicated me. He then recommended I get my thryoid ablated. I didn't want to go that way, as I am not sure I want to be hypo permanently, so I have been controlling it with meds. Also, some reports of cancer have been reported on patients who have had RAI therapy.

I have been off and on tapazole for years. I will be perfect for about three years and something stressful in my life will throw it all out of whack. Some doctors have actually told me that if I don't have it ablated they will not treat me. One actually gave me six tapazole pills and left me to decide. Well, he was fired immediately.

Anyway, I have been doing very well for about four years now taking 10 mg. of tapazole and inderal (I have high blood pressure) but recently my tsh has gotten high so, I am sure I am on my way to being hypo. What a roller coaster this disease is.

I have been dealing with this for twelve years now, and I can tell you it isn't fun. The Internet has made it much easier to obtain information, which helps in many ways. Sorry this is so long.


[This message has been edited by moderator1 (edited 06-03-2003).]

 
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Old 09-17-2001, 11:57 AM   #32
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Hi everyone. I'm new to the board and to hypothyroidism. I was just diagnosed Friday. I'm 23 years old and pretty relieved that I can finally put a name to the symptoms that were ruling my life for about a year. I saw a counselor about severe depression, suicidal thoughts, and crying fits. We got nowhere and she urged me to go to the doctor. I had a fear of doctors and continued to suffer until I realized that my phobia could be the only obstacle keeping me from a normal life. I listed my other symtoms (constipation, hair loss, chronic fatigue) and he tested my thyroid levels that day. He called a few days later and said it was borderline low and to come back in a month. I did and it was even lower. I'm now on Unithroid and I'm looking forward to the day when I see results. When I hear other stories, I understand I was lucky to have a doctor with the forsight to test so quickly. I look forward to seeing what all have you have to say on this subject and will definately keep checking this board.

 
Old 10-15-2001, 10:28 PM   #33
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I feel what your going through Tree Frog and everyone. I feel very frustrated because I have been to several doctors, none of which diagosed me with any problems. I did plan to go to a endocronologist but I can't anymore because my insurance expired and I can't afford medical care.

Here are my symptoms:

-Hair loss (all body hair: whole head(so it's not male pattern baldness), eye brows, nose hair, facial hair, body hair(arms, armpits, legs, pubic),etc).

-Loss of appetite, especially during the morning. And I feel like vomiting whenever I eat a small amount of food(even though I might still be hungry).

-Dry mouth, lack of saliva.

-Fatigue, sometimes I feel I have no energy at all. My heart sometimes pounds really hard and fast for no reason.

-diarhea

-hot breath (the kind of breath you feel when you have a fever)

-small headaches

-lack of sweat(even when playing sports), but sometimes when I wake up in the middle of the night I am quite sweaty.

-just a general feeling of sickness most of the time.


 
Old 10-17-2001, 01:51 PM   #34
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I am so exhausted I cannot read all the stories at once. I was just diag'd with hypo. I've been on meds for 1 mnth and feel no different. I am getting re-checked next month. I just wanted to say that I had no idea....Of what I have read I have alot of the same symptoms....I assumed I was over 30 and this is the way it is....I also have severe TMJD which causes much pain and suffering. I thought alo t of what I felt was due to TMJD. Nver did I think it was my thyroid. I had asked my old PCP once if she thought my thyroid was inactive she said NO. My new doc I didn't even ask he just did the blood work and well....Here I go.....

 
Old 11-16-2001, 08:40 PM   #35
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geeze, after reading all these stories I feel moved.
I am pretty sure I have always been hypo. when I was young I had AWFULL periods, I'd have to stay home from school,would sleep till the afternoon on weekends, but never had a weight problem till after I had my second child,then...... I would sleep ALL THE TIME. Friends would come over and and I would fall asleep while they were talking to me... LOL probably made them feel bad too, they really are not boreing at all. My weight was depressing me. I had some tests done and they said my thyroid was borderline but no meds.
I lost some weight w/ the help of diet pills, then got pregnanat again, and again could not lose no matter what.
long story short: My Dad died 3 yrs ago due to lung cancer, I was mamaging a store in the Mall and I couldn't walk across the Mall without felling out of breath. I figured I was just feeling this way due to loosing Dad, I was depressed, *****y, wanted to be just all alone. I went to the Dr and my TSH was 37!
So since then I have been on synthroid, but it is ever changing and the way I can tellis that I get very short of breath depressed,and irritable! everytime. When I call the Dr he thinks I am goofy cause I say, I can't breath and I need a blood test......
My question is always.. "why can't we just keep it a little high" that when I feel and function the best but they always say nope nothing doing.
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Old 11-26-2001, 03:57 PM   #36
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Dear Tree Frog,

Thanks for replying to my thyroid story. You are right. I do need to find another doctor. I went and read some of the accounts that others have sent to this sight. They all sound like me. I am so glad to know I am not nuts. I wonder if you could tell me what I want to say and ask for when I go to the next doctor. I read that you requested to try Synthroid, and you felt better. I know we are all different, but I am on Levoxl right now and don't feel any better. I am a definite Hypo without meds because they did that iodine ablation treatment, and killed off my "over active" thyroid. I am still not sure if that was the right thing, though 3 doctors have told me it was.

Also, I am glad you mentioned that you had the occasional stabbing pains. I get that. Sometimes it stops me from inhaling for atleast a moment or two. Other times it feels like the pain is pierching through my heart, almost like something is wrong with my heart. So, glad you said that. You paid close attention to your symptoms, which is great for all of us who go through the same thing. I also share your frunstration, as does my husband. Our intimacy has gone down the drain as a result of all this.

Anyway, I would appreciate if you could tell me what might be good to say aside from "these are my symptoms" , when I go to the doc again.

YOu can reply at : Yvette

 
Old 12-13-2001, 09:50 AM   #37
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Hi,
I'm real new to this so please be patient. I don't want to step on any toes here. My main thought after reading all of the posts is "My God, I'm not in this alone." I'm sorry for all of you and for me too.
Being called lazy when what you really are is sick is a real hit on your self esteem. I went for 20 years without a diagnosis. Doctors told me to just push myself away from the table. I put up with rude comments and snide remarks from family members. Once I was actually told that if I'd lose 20 lbs. they would quit smoking. Well, in '94 I was finally diagnosed as borderline hypo. and given .25 thyroxine and I thought I had been physically reborn. The energy! I lost 35 lbs. in 3 months. But, they didn't quit smoking! By April of 2000 my doctor had raised my dosage to .3 and I told him I wasn't feeling as well as I had at lower doses. He patted my arm and told me He was the doctor. By Sept. of 2000 I was spending much of my time on the bathroom floor. I couldn't leave the toliet because of one end or the other. I was having chest pains and I couldn't seem to get air into my lungs enough to feel like I'd had a deep breath. I went to a new doctor and now I'm no better off that I was 20 years ago. He goes strictly by the numbers, and I'm on .088 even though I've told him I felt my best on 1.50. I fired him this morning and I don't know what I'll do now. I do feel better knowing that maybe I'm not crazy. I am sick and tired of feeling sick and everyone else is sick of me.

 
Old 12-18-2001, 07:58 PM   #38
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I was diagnosed with Hasymoto Thyroiditis when I was 11 years old, I'm now 31. I don't see my doctor very often, and after reading some of your stories, i have a few questions i hope someone can answer. I've had sever sharp pains in both sholders for years. I've had exrays done, and gone to a specialist, no results. Does this have anything to do with the thyroid? Also, recently, someone mentioned that they thought my eyes were getting bigger. In someone's post here, they said there eyes buldged and then it went away after some medication was given. Is it possible, do you think that mine would go away as well?

 
Old 01-09-2002, 06:09 PM   #39
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In the ten years since the removal of my thyroid (through radioactive Iodine) I have been dx'd with depression, anxiety, cronic fatigue, and cronic inflamatory sinus (something)(not to mention all the ideas my husband had on the subject of "lack of interest"). Have been treated for the symptoms of all and two years ago I stopped all medications except for the synthroid (now levoxyl), in order to take a good long look at how thingsare without the question of side effects from the meds.

Mostly its like trying just to get through the day in hopes of a better tomorrow. The feeling of self-loss is really bad. I was always so spunky had such a want to LIVE life, not just get through it. I have monthly anxiety atttacks (which I just read may be attributed to the adrenal-therefore its on my list of tests to be run), I loose my hair (much more than the "normal" 60 strands per day), I'm cold yet I have an angry sweat which when that occurs "LOOK OUT"! I...gosh there seems to be so much. the blank stares, sleeplessness is a monthly occurance (thank heavens not nightly). At times I feel like my insides are moving soooo fast yet I'm too tired to catch up to it. I am without a thyroid yet I can not GAIN an ounce. I loose it! Scary for me. Irritable!!!(did I mention that?) My poor kids!!! It takes alot and I fight what I am feeling to try not to jump the gun (so to speak) with my kids. This fog in my head has made it difficult to set good examples. Organization and regular schedules are hard to keep.

I am thankful for the this messageboard!

 
Old 01-13-2002, 12:15 AM   #40
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I couldn't hardly believe what I read in Tree Frog's story, it's like reading a story about me. I'm really amazed. I have been diagnosed with FMS but now that I'm reading about these symptoms I wonder if it could possibly be thyroid related. Ten years ago I had 2/3 of my thyroid removed because I had a tumor on it. The doctor told me I didn't need medicatioin because 1/3 of your thyroid should be enough. All along I have had the blood test to check my thyroid levels, they have always been in the normal range, but always the lowest of the normal range. Last week I had to see a GI specialist and he noticed that my thyroid looked large, now if I only have 1/3 of it left it should not appear to be large. Anyway I see me PCP monday morning becase the GI specialist called him with his concerns. I have had the hair loss (this was attributed to stress), tachacardia, dizziness, IBS, joint & muscle pains, etc. etc. etc. I will be rather unhappy if I find out that all this time I've suffered through the pain of FMS and could have been regulated by thyroid medication.

Darlen

 
Old 02-06-2002, 04:52 AM   #41
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My story is just like most everyone's - misdiagnosed for years - usually as depression. What is different is that my hyperthyroidism actually came and went a few times before I was diagnosed. When I finally saw an endocrinologist he said that wasn't unusual and told me that I really didn't have to have the radioactive iodine, I could just go on as I had been but with medication to suppress the flare ups. Anyone who has been through hyperthyroidism knows how unbearably horrible it is and would never want to go through it again if a solution was possible. I asked for the iodine treatment. As often happens, they gave me too much and I crashed into hypo within a few weeks. That was a whole new hell, and painful to boot! Well, after a year of trial and error my Synthroid dose was at a good level for me, although I had gained mega weight which I still haven't lost 6 years later.

I have a question for my fellow sufferers: Is it possible that being hyperthyroid for a long time and untreated can cause permanent damage? I don't feel as though I've recovered completely. For example: While I was hyperthyroid I developed weakness which was especially evident in my legs. (I couldn't lift myself into the back of a minivan and actually fell on my face.) While the weakness isn't as bad, I really don't feel I'm back to "normal." Also, while hyper I developed a sort of "vertigo" (for lack of a better word) which was like an altered perception and which made it nearly impossible for me to negotiate stairs. It even affected my driving so that I felt like I was being pulled to the center of the road. I'm still suffering from this problem and rarely drive. I'd be the first one to admit to a psychological problem, but where both of these problems developed in my hyperthyroid state I wonder if anyone else has experienced the same. Thanks for your input.

 
Old 03-30-2002, 07:35 PM   #42
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Hi Everyone...Here is my story. Posted per your request. Take care. NEVER GIVE UP!!


judekate
Member

--------------------------------------------------------------------------------
Well came back from Vanderbilt for endocine stim testing.
I will sum up what has happened in the last 19 months.

Aug 2000 I delivered my wonderful son. Ten weeks post partum I Developed Thyroiditis with positive TPO and TGAb. I was very ill with it. My OBGYN said "post partum depression with all the symptoms I was having (hyper symptoms). She did no exam and no blood work. I fired her. Then I was diagnosed Hyperthyroid four months post partum. I had tremendous headaches. So I had thryoid uptake scan to confirm the thyroiditis and an MRI that showed my pituitary was enlarged. Initially I was told it was negative. The endo I saw for the thyroidits said I would recover in a matter of a few weeks and be fine. Well by late spring of 2001, I really became ill. Especially when they took me off my thyroid medication. I had full body tremors I muscle wasted and lost almost 15% of my body weight in a two week period, tachycardia, arrythmias, you name it I was sick with it. No one knew what the heck I had....I was then diagnosed with ANXIETY. I fired these doctors. So in June of 2001, I had new doctors who took me serious. They referred me out to every specialist you can think of. They ran another MRI of my brain and pituitary. Low and behold this is when I discovered my pituitary was enlarged STILL. I was told the one I had in December of 2000 was "negative". Nope. So I went from endo to endo trying to get diagnosed. "It's not your thyroid and your thyroid levels are normal". Another endo told me I had a "bump" on my pituitary and that I had "skinny womens" disease (this man should not be practicing). My "skinny problem" was a result of my extremely low blood pressure that was making me even more ill average 80/40 (my skinny problem I recently found out was a transient hypoadrenalism because of that "bump" on my pituitary)). Fired him. Finally I had a doctor who said it is your pituitary but you need to go to a major medical center like mayo. So my husband and I flew to mayo and got blown off after spending 10,000 plus travel expenses. This was in August of 2001. Finally I did some extensive research on pituitary and thyroid disease. I contacted three major neuroendocrine centers. I choose Vanderbilt in Tennessee. Hooray!! I had testing done. I had stim testing done. Insulin tolerance test to check for pituitary function for ACTH and growth hormone. I am ok with ACTH and results for adequate growth hormone are not back. I have HASHI's. Doctor put me on synthroid 88mcg to put my thyroid "asleep" since it is struggling to work. He said lets stop fooling around with titrating up over time. Your gland is going to fail in the future let keep your tsh below 1.0. I think most of you know what I am talking about. A doctor with a brain. Back to my pituitary. It is making my thyroid work but the thyroid gland itself is damaged and that is why I am on thyroid for good now. My FSH and LH (these are hormones that stimulate your ovaries to give you estrogen and testosterone and make you ovulate) are not up to par. So I am on permanent estrogen replacement, cycled with progesterone and taking testosterone replacement.

I had something very rare. My immune system attacked my thyroid after the birth of my son. It then went on to attack my pituitary gland. When these two things happen together it is called lyphocytic hypophysitis. My pituitary failed for a short period of time (looking back it was between December 2000 and it is still recovering) There is a chance I will become permanently hypopiuitary over time. I will be flying to Vanderbilt once a year or more if needed to have the endo doctor check me over. This doc is down to earth and all brain. I also have two doctors here who now know what we are dealing with and know how to treat me (and trust me that I know there is something wrong).

What is so awful is that not very many endos know what they are doing. They think you can have blood drawn and that is enough to give you a picture of a patients hormone health. I dont care if it is just thyroid or pituitary. Stimulation testing is the best picture. In my opinion if you feel you have just a thyroid problem, a TRH stim test is going to give you a great clinical picture of thyroid function. You also have to have a doctor that listens and really LIKES what he/she is doing and that is to help people. Do not ever give up. I went through 10 doctors four of which were endos that continued my ill health for the last year and a half.

Just an added note....lymphocytic hypophysitis occurs in about 25 percent of all post partum thyroiditis patients. That is scarey. I wonder how many post partum thyroid patients are out who have pituitary disease???

I am a Registered Nurse. I never believed something like this would happen to me. Here I am a healthcare professional and doctors dismissed me as "too worried".

Boy I am glad I kept going. I have to be closely monitored now. Especially for future secondary adrenal failure.

This is definately not a piece of cake. I thought diagnosis would bring relief. Now I have that "unknown" lingering in my thoughts.


 
Old 04-02-2002, 05:19 PM   #43
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I waited a long time to tell me story. I guess I wanted to make sure it wouldn't be to long or maybe I wouldn't say it right. Here goes....
I was 35 and very sick. I couldn't lift my head up hardly. I daughter was only 6 at the time she is 26 now. I would get up in the morning and make a cup of coffee and have to go back to bed because I was so tired. I felt like I had the flu aching muscles low grade fever. I was still working at the time and just had to take a leave I just couldn't do it anymore. I was going to the doctor weekly. Nothing ever changed they said I was depressed and need to see a therapist. I went to one for a few years. I never got any better. I was in a bad marriage at the time. My X husband is an alcoholic and my children were to small for me to get the guts to leave. I finally went to a doctor that specialized in Arthritis I hurt so bad it was the only thing I could think of at the time. He told me I had fibermyalgia. It took me seven years to get over feeling that sick!I then was able to go back to work at a full time job again but not doing the same thing. I went back to school and got my administrators license and am now working in an assisted living facility for the elderly. I was feeling pretty good for a few years. My two boys were living on their own and my daughter was in high school. I finally left my X husband and tried to start a new life.I seem to be doing fine have times when I am still tired go to the doctor every three months. Then my doctor (who I thought I was good ) retired. I had to find another doctor thank goodness!! I complained to him about being tired not myself etc. He did a bunch of blood work and said, my cholestrol was very high. I am not a meat eater and was very surprised it was always just right! He also ask me how long my thyroid was at 6 I said, I have no clue...he said we should try starting you on something see if the cholestrol comes down and you start to feel better. I did and my cholestrol came down to normal. I felt so bad for so long its hard to tell when my thyroid started to go off and the old doctor never said a word so who knows. I am just glad I found this board and am starting to educate myself on my own health. BTW, I am remarried to a wonderful man and its a happy ending. I keep track of my own thyroid now thanks to you all very bright people and I have a doctor that will listen to me. Joy

 
Old 04-02-2002, 05:22 PM   #44
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I waited a long time to tell me story. I guess I wanted to make sure it wouldn't be to long or maybe I wouldn't say it right. Here goes....
I was 35 and very sick. I couldn't lift my head up hardly. I daughter was only 6 at the time she is 26 now. I would get up in the morning and make a cup of coffee and have to go back to bed because I was so tired. I felt like I had the flu aching muscles low grade fever. I was still working at the time and just had to take a leave I just couldn't do it anymore. I was going to the doctor weekly. Nothing ever changed they said I was depressed and need to see a therapist. I went to one for a few years. I never got any better. I was in a bad marriage at the time. My X husband is an alcoholic and my children were to small for me to get the guts to leave. I finally went to a doctor that specialized in Arthritis I hurt so bad it was the only thing I could think of at the time. He told me I had fibermyalgia. It took me seven years to get over feeling that sick!I then was able to go back to work at a full time job again but not doing the same thing. I went back to school and got my administrators license and am now working in an assisted living facility for the elderly. I was feeling pretty good for a few years. My two boys were living on their own and my daughter was in high school. I finally left my X husband and tried to start a new life.I seem to be doing fine have times when I am still tired go to the doctor every three months. Then my doctor (who I thought I was good ) retired. I had to find another doctor thank goodness!! I complained to him about being tired not myself etc. He did a bunch of blood work and said, my cholestrol was very high. I am not a meat eater and was very surprised it was always just right! He also ask me how long my thyroid was at 6 I said, I have no clue...he said we should try starting you on something see if the cholestrol comes down and you start to feel better. I did and my cholestrol came down to normal. I felt so bad for so long its hard to tell when my thyroid started to go off and the old doctor never said a word so who knows. I am just glad I found this board and am starting to educate myself on my own health. BTW, I am remarried to a wonderful man and its a happy ending. I keep track of my own thyroid now thanks to you all very bright people and I have a doctor that will listen to me. Joy

 
Old 04-04-2002, 07:27 AM   #45
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I decided to post my story....hoping to find answers, like so many of us.

I was always bone skinny. At 36 yrs old and After 6 children I was 5'8" and only weighed 121 lbs.

Then I went through a divorce(that lasted two yrs and was very nasty..stalking, etc.. About 6 months into it I started putting weight on, with no changes in diet.

Went to the doctors with this concern...and they laughed (I was up to 135). I was scared though because my mom hit 36 yrs. and started putting weight on for no apparent reason and now is over 240 lbs and is 5'3".

I dieted for the first time in my life, and lost nothing. I began to try other more healthy things than dieting....like watching fat. But continued to gain weight.

Once I reached 150 I demanded from my doctor that something be done...there had to be something wrong with me. So they did some blood work and said everything was fine. I just needed to cut back what I was eating. Stupid idiots!!!!!!! http://www.healthboards.com/ubb/confused.gif I was only eating 1400 calories a day.
And that was mostly veggies and fruit.

Well with no help from the 3 different docotrs I I started

1.eating vegetarian for 6 months...... still gaining.

2.eating different combinations of food (cabbage soup diet) .....still gaining

3.weight watchers for 8 months......still gaining(they said I was cheating)

4.took natural trim for 4 months .....LOST 28 POUNDS and then started gainging with no difference in habits.......gained all back and 10 more while still taking herbs. grrrr

5.started on the ER4YT diet. Felt great....still gaining

Started exercising every day alternating arobics with stregnth training...after 7 months .......did not loose one freaking inch

6. Tried Adkins diet. LOST 25 POUNDS IN THE FIRST MONTH.....stalled and started gaining it back after 4 months of altering carbs to try and break stall.

Went to a nutritionist as I was up to 180 pounds. She did blood work....

thyroid was not bad but borderline...she gave me stuff to improve that.
Progestrone was low...gave me stuff to mend that.
recommended the Adkins....still gained.... much to her surprise. She told me it was genetic and there wasnt much else she could do.

Now at 207 pounds I am ready to cry. I have 9 of the 11 thyroid symptoms. THe only 2 I don't have is constipation and heavy periods.

I am so discouraged, so disgusted and so miserable. My husband is supportive as he has seen all I have done to try and get a hold on this gaining.


I guess I am hoping for some miracle...but meanwhile still searching. lol

So that is my story. Hope someone out there has that magic wand. lol

 
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