What's your hypothyroid story?

Raemama

I'm kicking off the group with this (seemingly) simple question. For me, being hypo means fighting an uphill battle with my weight and fatigue. And, as I get older, it becomes more and more important to win the battle!

I was diagnosed with thyoid disease in 1994, after being in a depressed/tired state and gaining over forty pounds in four months. But, I realized that I'd been suffering from the disease for many years prior to that... I had symptoms as far back as 1989-90. Too bad it wasn't until I had gained a total of 100 lbs that I found out!

For many of the earlier years of the diagnosis, I didn't have adequate insurance (or none at all) so maintaining a decent level of hormone replacement was a dream. In addition, most of the physicians I went to really didn't know anything about treating the disorder and instead of truly investigating the different treatment options for the disease, slapped labels like "depressive disorder" or "fybromyalgia" on me (along with their respective drug therapies).

The breakthrough came when I found a great doctor who immediately put me on cytomel in conjunction with synthroid. Within two weeks, I started feeling like a real human! Although I continue to have issues with hitting the correct levels, I can finally lose weight (nearly) like a normal person.... I'm looking forward to the day when I will finally be rid of those 100 lbs!

happyjoyousfree1

Hi I'm Elle,
During an ultrasound of my 2nd child I learned I had a malgnant tumor on my ovary. Benig close to term I had her and and a hysterectomy followed with chemo and radiation. Bye bye thyroid.
As with most of us it took awhile to figue out what was going on and I felt like I was losing my mind. I ached everywhere, felt ike I was walking underwater, my hair was coing out in chunks. The usual. When I brought my concerns to my GP his response was normal hormone reaction to surgery and of course I had just had a child recently.
I went home thinking it was me. The long and short of it is it took 2 years before I found a wonderful endo to get my levels straight.
Of course they've been tweaked as I've aged and my weight fluctuated.
I've lost 80lbs a couple of times and gained it back, but this time I've really come to terms with the fact that I'm not getting any younger and other health issues are just waiting in the wings.. It's time to grow up and take care of my body.I'm not a kid I shouldn't eat like one.
I hope we can help each other, because most people really don't get the whole thyroid thing.
They figure we take the medication what's the problem?

I'm looking forward to some good chats
Elle

bademasi

Hi everyone!

I am a Cushings Survivor. Cushing's syndrome is a hormonal disorder caused by prolonged exposure of the body's tissues to high levels of the hormone cortisol. Sometimes called "hypercortisolism," it is relatively rare and most commonly affects adults aged 20 to 50. An estimated 10 to 15 of every million people are affected each year. I was so lucky to have a rare form of this disease. I could have died if it went without a DX. I had so many symptoms and my Primary Care Doctor (at that time) gave me labels of fybromylgia, diabetic, serious high blood pressure etc. The last thing he said to me was.. you need to go to a physcologist. I told him I needed a doctor that will tell me what is wrong with me. I know my body and something is so not right. He then said the magic words... I will send you to and Endocronologist.

Some history...
I had so many problems for several years. I had noticed my changes after the birth of my two daughters. I had two girls 18 months apart. It sticks out in my mind... my hair texture changed. I had straight blond hair that would NOT hold a curl to save my life. After having my daughters my hair got thick and curly. It looked like I had a perm. Some say that I am so lucky to have all this curl... but then, I had called my mom and said I dont kow to take care of this hair. She had this type of hair and gave me some suggestions. I had gained weight with my pregnancies but seemed to loose it with walking. I lived in the country at that time with my first husband. I walked to get exercise and some mental-health-mommy-alone-time. I lost all that weight and then some. I began with high blood pressure that was not easily controlled. I had fybromylgia with so much pain. I was seeing an allergist for many problems of skin and had skin testings and was getting allergy shots. I was advised to have my tubes tied because of my blood pressue issues. I didnt want to do this but my husband pushed me to have it done. He didnt want the children we had. Sadly I had it done. One week after that I broke my foot and was in a cast. I put on some weight. I was active in the church and taught Sunday School. My marriage of 19 years came to an end because the strain of having children and he began using drugs in addition to his drinking. I do not drink. I did not want my daughters exposed to any drugs. My girls were in first and third grades. I walked out. I moved into my girlfriends basement then got an apartment. I met my second husband at my place of employement. He was going thru a divorce himself and we began as friends. He is 15 years my senior.

I had a great job. I worked in the medical field. I was an office manager for five doctors. I began to pack on weight. I was gaining about 30lbs a month. I was depressed. I was still getting allergy injections weekly. I had uncontrolled blood pressure and was on three medications for that. I was on insulin for diabetes. I had so many things wrong. I decided to put a transfer in for my job and took a less stressful job. I was a billing medical codes for the hospitals when my entire world changed.

Oh I wanted to get healthy. I began a strict calorie restriction diet. I walked the track with my children and Andy (my fiance), joined Curves Gym. I was miserable but determined. But the weight was so out of control that I reduced calories to 1,000 per day. I began to have a red round face. I was extreemly hot all the time. Like sweating with everything I did. I had severe pain in my abdomen. My gallbladder just stopped functioning. It was removed immediately. They discovered a mass on my adrenal glands. Yes one on each. One larger than the other. I was told by that wonderful doctor I had that I shouldnt be concerned at this. RED FLAG one would think. I couldnt bend down to pet a puppy... I fell over trying to get up. Embarassing to say the least. I broke my heal in 2005 at the track, as I was walking. I tripped on the sidewalk and then pushed myself to walk the track two laps until I said I couldnt do anymore. The next morning I found out that I broke my heal. I was told it is one of the strongest of the foot bones. I now know that my bone mass was weak due to the disease I had.

I became depressed and extreem fatigued. My family doctor had no clue what was going on. I dont think he believed me on exercise and low calorie diet. I have food journals and yes... I did that low 1,000 calorie for about a year. I was concerned at how red my face was at that time. I was told by that Primary Care Doc that it was because I was Irish. Come on.... was he serious?? So that is when we had that conversation that I needed to go to a physcologist and I got really angry with him.

I was in the room with my Endo Doctor and in a short visit she said she thought she knew what was wrong with me. I was so relieved that a name was given to me. Cushings Disease. Little did I know what it ment. She had to confirm it first. I had to do the 24 hour urines, CT Scans, and other tests. I had to take a test where they entered in my groin and went into my brain via artery to see the tumor on my pituitary gland. The tumor did not show up on the CT scan. I had extreem levels of ACTH hormone and Cortisol that were so off the charts they were amazed. I was sent to a Neurologist surgeon. I was in surgery within a week of meeting him. Lucky for me they had a method of going in thru the nose and removed a bone behind my optic nerve and gained access to the brain. Surgery was in November 2005 and was aprox 4 hours long. My pituitary glad was damaged and so they took that too.

I am now Adrenal Insufficant. Thats ok... I am alive. I have one mass remaining on one of my adrenal glands to date. The other one has shrunk since my surgery. I have that one watched... it is fairly large in size but, I dont want that surgery if it can be avoided. I have to take replacements for the lack of a pituitary gland. I will list what comes to my mind.... I am still a diabetic but no longer on insulin. I am on only one pill for that now. I am on synthroid for my thyroid. I am only on one blood pressure medication now. I remained very weak. Extreeme fatigue. I have to take a daily steriod for the lack of a pituitary. I have to adjust the dose if I am having a cold or sick with a sore throat because your pituitary gland would increase to help you get better. I dont have that. I was still having balance and temp issues in my body. I get many headaches... and migranes. I was very overweight and had no energy to do anything about it. I had extreeme joint pain upon waking each morning. I felt so weak and very depressed.

I stayed with this Endo Doctor for sixt years and then in November 2011, I went to a new Endo for a second opinion and got a new hormone I was lacking. Estrogen. I was tested for Menapause and I am no where near it. I had extreemly heavy periods and they were not always like that for me. So this Endo put me on Estrogen...it was like magic. I had energy suddenly. I was advised by her to go to a Gyno Doctor. He was amazed of my history and I had a Uterus Biopsy done. It was to be sure there was not another problem. It was normal and both doctors feel that I was in great need of this hormone for some time. With it I began to cool down. I stopped sweating at the slightest movement. I am now ready to get muscle strength and exercise. Before Nov 15, 2011 I wasnt able to walk my dog down the road and back. I would be so hot and wet from sweat. I wouldnt have done it alone either... my balance was so off. I was suddenly a new person. I felt like me again. Me.. but a very overweight me. I have lost 22lbs since that day. I found MFP app from my daughter and now I am here.

Thank you for the invitation to your group. I am so glad to be here! :bigsmile:

Bonnie

Raemama

Hi I'm Elle,
During an ultrasound of my 2nd child I learned I had a malgnant tumor on my ovary. Benig close to term I had her and and a hysterectomy followed with chemo and radiation. Bye bye thyroid.
As with most of us it took awhile to figue out what was going on and I felt like I was losing my mind. I ached everywhere, felt ike I was walking underwater, my hair was coing out in chunks. The usual. When I brought my concerns to my GP his response was normal hormone reaction to surgery and of course I had just had a child recently.
I went home thinking it was me. The long and short of it is it took 2 years before I found a wonderful endo to get my levels straight.
Of course they've been tweaked as I've aged and my weight fluctuated.
I've lost 80lbs a couple of times and gained it back, but this time I've really come to terms with the fact that I'm not getting any younger and other health issues are just waiting in the wings.. It's time to grow up and take care of my body.I'm not a kid I shouldn't eat like one.
I hope we can help each other, because most people really don't get the whole thyroid thing.
They figure we take the medication what's the problem?

I'm looking forward to some good chats
Elle

Elle - so glad you recommended doing the group thing

I didn't realize that radiation and chemo destroy thyroid... is that something they said might happen?

Rachel

Raemama

Hi everyone!

I am a Cushings Survivor. Cushing's syndrome is a hormonal disorder caused by prolonged exposure of the body's tissues to high levels of the hormone cortisol. Sometimes called "hypercortisolism," it is relatively rare and most commonly affects adults aged 20 to 50. An estimated 10 to 15 of every million people are affected each year. I was so lucky to have a rare form of this disease. I could have died if it went without a DX. I had so many symptoms and my Primary Care Doctor (at that time) gave me labels of fybromylgia, diabetic, serious high blood pressure etc. The last thing he said to me was.. you need to go to a physcologist. I told him I needed a doctor that will tell me what is wrong with me. I know my body and something is so not right. He then said the magic words... I will send you to and Endocronologist.

Bonnie,

I'm so glad you're here, too - and glad you're alive! A lot of people don't know about Cushings. What were some of the initial tests that you had that confirmed or suggested the diagnosis?

Rachel

Trutra

Hi everyone,
I was diagnosed about 2 years ago, but to be honest, I think it started in 1998 at about the time I fell pregnant with my daughter. Since I was pregnant I have had terrible dry skin on my face particularly, so bad it would flake and bleed. This all clears up when my hormone levels are normal.
ANyway, my story follows. I have always been overweight, but able to lose relatively easily. Then, after I had my daughter I just picked up more and more weight, and nothing I did seemed to help. I would lose a few kgs to start off with and then pick up more.
About 5 years ago my periods started becoming very heavy so much so that sometimes it felt like a tap was turned on and 7 days later turned off. I was tired all the time and drained. I had scans etc which were all normal, and was put onto iron tablets. Then it settled down a little bit for a while. About 3 years ago it started up again. At this stage I was tired all the time, would sleep all day if left, moody, irritable, dry skin worse than ever. I ignored it for a while, but then went to my doctor for a blood pressure check (I also have hypertension) and he suggested bloods. I also mentioned at that stage that I have been battling to put on weight. I had a full screen of bloods and his secretary phoned me on Friday telling me I needed to see him urgently on Monday. Of course, I spent the entire weekend worrying!
Turns out I was extremely anaemic and showed hypothyroid. Some iron tablets and eltroxin followed and within 2 weeks I was a different person. Lots of energy, periods slowed down and everything else settled. Six months later I got a tummy bug, and had the runs for about 10 days, back to square one. Anyway, it did settle again on the same medication.
However, over the last few months I have been feeling tired again, I thought it was just the end of year etc, but when I had some bloods done last week it shows my hormone levels are not right. So, I guess the medication will have to be adjusted.

kbuckley623

I have been battling my weight for years but was just diagnosed in September. My doctor is still trying to determine the best med/dose for me and she reports that the process can take a while. So glad there is a group. I need all the support I can get on both counts!

happyjoyousfree1

Hi I'm Elle,
During an ultrasound of my 2nd child I learned I had a malgnant tumor on my ovary. Benig close to term I had her and and a hysterectomy followed with chemo and radiation. Bye bye thyroid.
As with most of us it took awhile to figue out what was going on and I felt like I was losing my mind. I ached everywhere, felt ike I was walking underwater, my hair was coing out in chunks. The usual. When I brought my concerns to my GP his response was normal hormone reaction to surgery and of course I had just had a child recently.
I went home thinking it was me. The long and short of it is it took 2 years before I found a wonderful endo to get my levels straight.
Of course they've been tweaked as I've aged and my weight fluctuated.
I've lost 80lbs a couple of times and gained it back, but this time I've really come to terms with the fact that I'm not getting any younger and other health issues are just waiting in the wings.. It's time to grow up and take care of my body.I'm not a kid I shouldn't eat like one.
I hope we can help each other, because most people really don't get the whole thyroid thing.
They figure we take the medication what's the problem?

I'm looking forward to some good chats
Elle

Elle - so glad you recommended doing the group thing

I didn't realize that radiation and chemo destroy thyroid... is that something they said might happen?

Rachel

Hi Rachel,

No. At the time the cancer was the main objective. Who knew by 40 I would be diagnosed with osteoporosis too. I was told this was alsodo to the radiation. But as with most things it beats the alternative:)

KristalDawnO

I don't have much of a story. I have always struggled with losing weight. I workout hard, but the weight doesn't budge or moves very slowly. Over the years I've had bouts of depression and fatigue. Hair loss, but thankfully that is doing much better now. I went into my doctor for an annual check-up, and my levels were off. So he placed me on some meds. That was about 4 years ago. My hair is thicker, but unfortunately SO AM I! hehe...I am getting serious about losing weight. It's good to have found the group

hisgirl86

I was diagnosed with Grave's Disease when I was 19, tried to control it with meds but it just kept getting worse, and then I developed a goiter....that just sounds gross to say It honestly didn't look very bad, but still. Since I had the goiter I was recommended to have my thyroid removed, so I had surgery at 20, and immediately started to gain weight. I was 180-190 at time of surgery, and with in three months I was 200, and now at age 25 I am at 260. I have had such a hard time with dosage of medicine. Not to mention the majority of doctors I have seen don't really care about finding a solution to things, just write a different prescription and see ya in three months. The one doctor I had who was awesome, thought I may have Celiac disease as the cause of my meds not working, but the blood test came back negative for it. And then that doctor decided to go into the Hospice field and I'm stuck with another "see ya in three months" doc.

Once I get insurance again I want to see an endocrinologist. My sister has PCOS, and since that runs in families it has been discussed with various doctors but no conclusion has ever came about. I'll just be glad when I can get a doctor to see on a regular basis without having to switch around, and then I'll be able to get some true answers. I have a feeling that thyroid troubles are at the root of alot of my problems, and I'd love to get them worked out.

Raemama

I was diagnosed with Grave's Disease when I was 19, tried to control it with meds but it just kept getting worse, and then I developed a goiter....that just sounds gross to say It honestly didn't look very bad, but still. Since I had the goiter I was recommended to have my thyroid removed, so I had surgery at 20, and immediately started to gain weight. I was 180-190 at time of surgery, and with in three months I was 200, and now at age 25 I am at 260. I have had such a hard time with dosage of medicine. Not to mention the majority of doctors I have seen don't really care about finding a solution to things, just write a different prescription and see ya in three months. The one doctor I had who was awesome, thought I may have Celiac disease as the cause of my meds not working, but the blood test came back negative for it. And then that doctor decided to go into the Hospice field and I'm stuck with another "see ya in three months" doc.

Once I get insurance again I want to see an endocrinologist. My sister has PCOS, and since that runs in families it has been discussed with various doctors but no conclusion has ever came about. I'll just be glad when I can get a doctor to see on a regular basis without having to switch around, and then I'll be able to get some true answers. I have a feeling that thyroid troubles are at the root of alot of my problems, and I'd love to get them worked out.

It is SO frustrating to not have medical insurance and also try to monitor a disorder that TRULY hampers your wellbeing. I'm so sorry you're going through this. I encourage you to find out as much as you can about thyroid drug therapy so that when you are able to go to the doctor, you will be armed with as much knowledge as possible.

cryblank

Hi all, I am Crystal. My story is nothing compared to those I have read here, but I feel this is a good group for me to belong to. I have had my thyroid tested several times over thei years and it always comes back normal. I have many of the symptoms of hyperthyroidism, so I truly believe that I have it, just not enough for it to test positive. I have no insurance, so further testing is really out of the question.

I have recently remarried my high school sweetheart, quit smoking, gained 2 more teenage children (total of 3--11, 14, 16) and a whopping 40 lbs even though I have cut out most sweets and we no longer keep pop/cola in the house. I gave up my mountain dew and my sweet coffe drinks, I try very hard to serve my family a very well balanced diet including lots of chicken, veggies, and low carbs.

I exercise 3-4 mornings a week with my wii fit and try to walk when the weather allows. I know my husband and I eat out too much, but we have cut a lot of that out also. I am at my wit's end and very depressed when I look in my closet. I am so happy with my new life, but not my new body. I want to look good for my awesome husband and more importantly live a long, long life with him.

I have started taking a supplement called Iodine plus-2 I can tell a difference in energy already. I hope to continue feeling better and better so I can really start exercising a lot more. I am happy at this point to get thru the day without needing to lay down and rest.

I guess that's it in a nutshell--thanks for listening!

Good luck to all!

Crystal

Raemama

Hi all, I am Crystal. My story is nothing compared to those I have read here, but I feel this is a good group for me to belong to. I have had my thyroid tested several times over thei years and it always comes back normal. I have many of the symptoms of hyperthyroidism, so I truly believe that I have it, just not enough for it to test positive. I have no insurance, so further testing is really out of the question.

I have recently remarried my high school sweetheart, quit smoking, gained 2 more teenage children (total of 3--11, 14, 16) and a whopping 40 lbs even though I have cut out most sweets and we no longer keep pop/cola in the house. I gave up my mountain dew and my sweet coffe drinks, I try very hard to serve my family a very well balanced diet including lots of chicken, veggies, and low carbs.

I exercise 3-4 mornings a week with my wii fit and try to walk when the weather allows. I know my husband and I eat out too much, but we have cut a lot of that out also. I am at my wit's end and very depressed when I look in my closet. I am so happy with my new life, but not my new body. I want to look good for my awesome husband and more importantly live a long, long life with him.

I have started taking a supplement called Iodine plus-2 I can tell a difference in energy already. I hope to continue feeling better and better so I can really start exercising a lot more. I am happy at this point to get thru the day without needing to lay down and rest.

I guess that's it in a nutshell--thanks for listening!

Good luck to all!

Crystal

Crystal - first of all, welcome!

I definitely know how you feel - you're not alone. I feel like God has given me a second (or third? lol!) chance at life through my wonderful marriage and I need to honor that by making myself as healthy as possible to be able to fully experience it. I hate that you don't have insurance and can't be monitored (and have also been there). I've heard about the idodine thing - please keep us all posted as to how your results continue.

I have a wii fit too and haven't gotten it out lately (okay - in months) but hearing that you are using yours makes me want to get it out and play/exercise - thanks for inspiring me!

Rachel

hisgirl86

SO glad to know we are in this together Sometimes it feels like I'm crazy because I really just don't feel normal but the doc doesn't seem to believe it. : /

Raemama

SO glad to know we are in this together Sometimes it feels like I'm crazy because I really just don't feel normal but the doc doesn't seem to believe it. : /

You're the best judge of if you feel normal or not. Also, be vigilant about trying to find the right doctor for YOU. It may not be an endo - the two best hormone docs in my area are primary care physicians.

Chaquilas

Hi everyone! I was diagnosed with hypo around 2004. My thyroid was checked every year since I was about 8 years old bc of my weight, but it was always normal. Well somewhere during my Jr. Year of college it became significantly abnormal. I have different ideas as to what happened but I will never no. I was pre med in college and worked several lab jobs. I worked around a lot of radiation and dangerous chemicals, but anyway. My symptoms were severe. I first began having panic attacks. I then would have uncontrollable muscle movements and spasms. Sometimes I couldn't walk for hours. I would get cramps so severe in my thighs that you could see them(even at my weight). I also jumped over 300 lbs and my cycle changed. After many Er visits and scary nights, I went for my yearly physical. My thyroid was shot. My Dr. Was amazed bc she always checked it. I eventually went up to 200 mcgs synthroid. I stayed there for years. Then I became severely depressed and I really just stopped caring. I gained almost 200 lbs in 2 years due to depression, stress, very severe bout with pneumonia, steroids, and not taking my meds. All these things basically rendered me to the bed and after failed attempts at working, I stopped in Oct. 2010. I am now on disability.

I had lab work done in august to get back on my meds. I didn't start taking them until Jan. I currently take 75 mcgs levo. Each day. I go for f/u next month.

I am fighting several battles ay once. I began my weightloss journey for physical health. I also began an emotional journey for mental health. I am trying my best to fight my mental battle without my meds. I'm sure that taking my thyroid meds helps and eating healthier and exercising does also. I am 2 months into my physical and bout a month and a half into my mental. Each.day is a struggle but I am certain I can make it.

Raemama

I am fighting several battles ay once. I began my weightloss journey for physical health. I also began an emotional journey for mental health. I am trying my best to fight my mental battle without my meds. I'm sure that taking my thyroid meds helps and eating healthier and exercising does also. I am 2 months into my physical and bout a month and a half into my mental. Each.day is a struggle but I am certain I can make it.

Welcome to the group! You're doing a great by being steadfast on the meds - keep up the good work. For me, having my thryoid supported adequately helped a lot with the depression I felt when I wasn't on them.

Aaron1978

Hello, everyone, it is so nice to see this group on here. Let me start first by saying I have started myfitnesspal for for the 3rd time over a 3 year period now. The only difference this time is that I was diagnosed with Hypothyroidism/Hashimoto Thyroiditis. I was diagnosed 14 months ago and my Dr. is still trying to find the proper medication dosage. I have gained 65 lbs and it all came on at once. I would love to lose this weight. I have struggled for about 4 years with my weight and I knew something was wrong but I tried to tell myself it was me. I started to haunt my Dr. with my many symptoms when they got out of control and it took me seeing a new Dr. before I was diagnosed. My entire life my weight has been up and down and I am close to being at my highest weight once again. I am tired of it and taking as much control back as I can. I am starting a low-glycemic diet along with exercise as of tomorrow and plan to start on the long hard road of regaining some control and losing this weight. I know this will be a struggle and I am looking forward to the support.

Raemama

Aaron - I'm so glad you joined the group! Having support for your thyroid deficit makes all the difference in the world. I'm so glad you were able to get diagnosed and are getting treatment.

Welcome!

Rachel

Striving4Fit_MrsOrtiz

Hi my name is Karina, I am 19 years old. I was diagnosed with hypothyroidism when I was 8 years old. As a child I wasnt responsible for taking my medication. Before my diagnosis, I was a very thin child. By the 9th grade I weighed 193 pounds. It was so devastating being a teenager, and weighing so much. Being the joke of the class. I never knew how it felt to wear a two top bikini. I now weigh 220, have my first baby. I'm tired of letting this disease control my life. I want to feel beautiful and my son be proud of me being his mom, and feel ashamed.

Raemama

Hi Karina -

You were so young to be diagnosed! I'm so sorry you went through all of the taunting, etc... that's just horrible.

You can take control of your life - even if you have thyroid disease!! You made a great step by joining the group!

Rachel