say a little about your thyroid issues
Options
Replies
-
Hi
I was born with Congenital Hypothyroidism which was found when I was 23 months old. My doctor kept me on high dose so as to not stunt my growth and I was active so I never had weight problems until I hit my thirties and developed a rare neurological condition which caused mobility problems.
I also had problems with my body converting T4 to T3 and it dropped dangerously low at one point I had severe fatigue. I went up to 16 stone but when they got my meds right and i got more energy and took up wheelchair sports and got weight back down.
My condition did progress unfortunately and some meds they put me on meant I regained some weight but this time only got to 12st 7 when I decided to come off them (muscle relaxants) as I have stiffness, balance & co-ordination problems and involuntary muscle movement from my condition.
I went on intensive Neuro physio program involving lots of exercise to re-learn how to control muscles and regain co-ordination etc and lost 32lbs so far. I'm now down to 10st 3 and have a stone left to go to reach my goal weight.
I found going low carb helped kickstart my system and at first cut out bread etc completely, however cos of energy my body uses from my condition my doctor asked me to try wheat free alternatives rather than just eliminating them altogether as my body needs the extra calories.. so I'm no longer calorie counting but doing mostly wheat free/clean eating (except for the odd gluten free brownie and brandy & coke
)
I'm 42 now and have been wheelchair user since I was 35.
Leigh
aka shakybabe
Hi! I am 43 and I was also born with congenital hypothyroidism. My thyroid worked long enough to throw off the early tests they give you in the hospital and then it stopped working completely. I was diagnosed about the same time as you. I could not walk very well and my mother told me all I wanted to do was sleep. I was put on Synthroid and after that my life became very normal. I grew very quickly and a completely normal life. I was always thin and I had none of the regular symptoms that most thyroid patients have. I've been told there are pictures of me when I was a toddler in medical journals which is kind of cool. Although I think I'm stable right now, I believe that having three children knocked my metabolism out of whack and it has been extremely hard for me to get back to that pre-baby weight. I was off for about a year or two and suffered from depression, weight gain, hair loss and exhaustion. My husband didn't know what was going on with me and neither did I. Sad it took me a while to realize it was my thyroid....I had never had issues like that before and when you are in a depression you don't want to think about what it could be..you are just depressed. It almost cost me my marriage. Well I am finally back on the right path. My Dr. Switched me to Armour and it seems to be working fine. I finally feel like myself again. It's good to know there are others out there like you. I am sorry to hear that you had a neurological issue. Did they say what might have caused this? Was it a seperate issue from your thyroid? You seem to be managing it quite well now as well as your weight loss.0 -
I have had thyriod nodules for years. I am now at least the third generation in my family with thyroid issues. I went to numerous doctors, but was put on the watch and see regiment as all my bloodwork came back normal despite having almost every symptom of an underactive gland. It was not until I complained that I could barely swallow that I was referred to an endocrinologist a second time and a surgeon. I had the right gland removed and was told that the goiter had extended deep into my sternum. No wonder I could not swallow. On top of that my voice was always horse and I was constantly clearing my throat. It was not until I had that part f the gland removed that the endocrinologist said I had Hashmoto's Disease.
It's been 6 months and am due for another hormone level check. Levels have been normal the last two times they were checked. My fear is that I amheaded down the same road because I am now gagging when brushing my teeth and my medication has begun getting stuck. I BEGGED the surgeon to remove the entire gland because I feared with the disease that it would spread to the remaining half. Looks like I'm headed back to he hospital to have the other half removed. Perhaps, I can get some insight through the members of this group that will help.0 -
Picked up my refill for my thyroid meds.......always look to make sure it's correct. Always has been......except now. Thank goodness I looked. I take 75mcg. Pharmacist gave me 50mcg.
So when you get your meds......ANY meds......double check. People make mistakes.0 -
I was diagnosed with Hashimoto's about 3 years ago, at age 17. My doctor suspects I've had it for much longer than that.
I'm on 100mcg of Levoxyl already, which my doctor isn't happy about. She says the auto-immune side of my disease is far more aggressive than most cases she sees. (Antibody counts over 1000!)
Anyway, I've been kind of chunky my whole life, even though I've been playing sports since I was 7 and I eat... decently (definitely room for improvement).
Despite being hypo, my Hashi's makes me very anxious (adding on to my OCD and panic disorder), but exercise helps that.
I'm coming off of a ruptured ankle tendon and I have knee problems, so workouts have been scarce the past few months.0 -
Welcome plot_twist :flowerforyou:
Lots of very helpful people here, and great information too!1 -
I've been on MFP for quite some time, before my TT even. I had nodules and a cyst that turned out to be follicular-variant papillary cancer. I first noticed the lump back in 2003 about 6 months after my 2nd child was born. Went through and ultrasound, fna, and a T99 scan (I was breastfeeding so that was the least invasive) and nothing was conclusive so the dr chose to watch it. I had yearly ultrasounds and last September he said it had slowly grown over the years and suggested I have it taken out. I didn't find out for 3 weeks after my TT that it was cancer, but they hadn't let me start thyroid replacement (I'm sure they suspected), so I was able to do RAI the next week since my TSH was high enough. Finally started my Synthroid at 112mcg, and by 6 mo I'm up to 175mcg as my TSH level just isn't getting low enough. It's perfect for a 'normal' person, but of course needs further suppression for thyca. I look forward to reading your posts and finding some encouragement and support and hope I can offer the same!0
-
Welcome 35again! :flowerforyou:
Sounds like you've been through a nightmare. How are you feeling now?0 -
In 2003 my GP told me that my thyroid seemed enlarged. Blood test were done. Levels were normal. Nothing was done.
In 2009 my OB/GYN said to me that is seemed larger than it had in the past. Blood test were done, then she sent me to get an ultrasound. Nodules were found on my thyroid. She referred to a specialist for a biopsy, but didn't tell me anything else. There was no diagnosis, no meds prescribed...nothing.
I did not go to the specialist due to scheduling conflicts with work (and I was SCARED). So, nothing was done...no meds, no diagnosis...nothing.
March 2011, I became so fatigued. I couldn't get enough rest. I gained 25lbs in a matter of a month. I was depressed...I felt horrible. During this time I was also laid off from work, so I was thinking that maybe my symptoms were due to me being sad because I was out of work. Finally in April 2011 I got up enough nerve to go to a clinic to get my thyroid tested again because it just seemed like it was even larger.
The nurse called me to tell me that I was to pick up a prescription for Levothyroxine and that my cholesterol was also elevated. She gave me a list of foods not to eat because of my cholesterol, but not high enough to put me on meds. She said with diet changes and exercise it should go down. Of course the list included NO coconut oil.
I had to pry information from her because she still didn't tell me WHAT WAS WRONG WITH ME. I was so frustrated. Finally, I called the pharmacist and got information about the meds and found that it was for HYPOthyroidism. I was prescribed 25mcg. Of course I knew nothing else about my condition, so I took matters into my own hands and looked up what I could about the condition.
The problem I keep running in to is that there is so many conflicting issues...what to eat, what not to eat can vary from person to person.
I took meds for about a month and then started taking Kelp (rich in iodine). In June 2011 I felt SO MUCH BETTER. I joined a gym in July and from about November until February I lost about 15lbs. I changed my diet--very limited fried foods, less sugar and I drink way more water each day. I'm still learning about what I can and can not eat, but it's still frustrating. I don't feel tired and I'm not depressed. I just can't seem to lose anymore weight and my goiter looks horrible.
I started a full time job in March 2012 so now I have insurance to see a specialist. I will be going in July to a thyroid institute here in town. I'm sure they will be doing a biopsy, but I really have a problem with taking pills. I wish there was a patch or something....
I got my cholesterol checked a couple weeks ago and so far with my diet changes and exercise it has gone down to 185. But, my goal now is to find natural remedies. I wish I could find a practitioner who is not so quick to prescribe a pill, but knew enough about natural remedies and lifestyle changes that could help me!!!
Anyway, I am grateful for this site. I am learning so much. In addition to the fact that coconut oil may be good for me!!0 -
Thanks! I'm feeling almost normal finally. I'll have my labs done again in about 2 weeks. I'm curious if this dose has gotten my TSH low enough, it was 2.57 at the end of April. I think the mental battle is the hardest in while trying to lose weight, especially more so with us who now have the additional obstacle to get thru.0
-
I am 34, soon to be 35, and I have been struggling with this thyroid issue for many years. When I was 19, I was diagnosed as having hyperthyoidism, anemia, and high cholesterol. The doctor put me on tapazol (probably spelled wrong) for the thyroid, zocor for cholesterol, and iron supplements for anemia. Over some time, my body started to react negatively to the medicine. The doctors solution was to iradiate my thyroid with radioactive iodine. What a nice present for a 20 year old. After the procedure I went on synthroid for hypothyroidism. As the years have progressed, I have been diagnosed with PCOS. This included a raise in my synthroid, plus an addition of cytomil and glucophage (metformin). I have good days and bad days. The bad days are really bad. Because of the anemia and hypothyroidism, I am always cold, always tired, and just feeling blah! I can look at all of the symptoms of anemia and hypothyroidism on a bad day and check off every symptom. Right now the possibility of having kids may not be possible because I have had two D&Cs and they have both came back positive for precancerous cells so I am now on megastrom I think. Just recently, I have been having pains in my sides. My doctor did an ultrasound and found that I have enlarged liver and spleen. Even though I am on all of this medicine that can affect the liver, he said the reason the liver is enlarged is because I am fat. It is interesting to say I just recently have pain and have an enlarged liver and spleen, but it has never shown up on any other ultrasound until now. Just frustrated with everything!0
-
Hi there,
I was diagnosed with hypothyroidism at birth (I was born without a thyroid). I think my biggest struggle is that I'm not really sure what normal is supposed to feel like. I can tell when things are really off, especially after really fast weight gain or loss, but I've had a lot of problems with sleeping, really dry, brittle hair, and dry skin that have never really been resolved. I switched to a naturopath a few years ago, and have found that I feel a lot better than I did with a gp, since he really only looked at where my TSH was at, and if it was in range he didn't want to mess with it. Because I'm a lot heavier right now, I don't feel like my body is absorbing the Levothyroxine as well, and that's making weight loss more difficult.0 -
I am 34, soon to be 35, and I have been struggling with this thyroid issue for many years. When I was 19, I was diagnosed as having hyperthyoidism, anemia, and high cholesterol. The doctor put me on tapazol (probably spelled wrong) for the thyroid, zocor for cholesterol, and iron supplements for anemia. Over some time, my body started to react negatively to the medicine. The doctors solution was to iradiate my thyroid with radioactive iodine. What a nice present for a 20 year old. After the procedure I went on synthroid for hypothyroidism. As the years have progressed, I have been diagnosed with PCOS. This included a raise in my synthroid, plus an addition of cytomil and glucophage (metformin). I have good days and bad days. The bad days are really bad. Because of the anemia and hypothyroidism, I am always cold, always tired, and just feeling blah! I can look at all of the symptoms of anemia and hypothyroidism on a bad day and check off every symptom. Right now the possibility of having kids may not be possible because I have had two D&Cs and they have both came back positive for precancerous cells so I am now on megastrom I think. Just recently, I have been having pains in my sides. My doctor did an ultrasound and found that I have enlarged liver and spleen. Even though I am on all of this medicine that can affect the liver, he said the reason the liver is enlarged is because I am fat. It is interesting to say I just recently have pain and have an enlarged liver and spleen, but it has never shown up on any other ultrasound until now. Just frustrated with everything!
Please, if there's anyway to change doctors -- DO IT!! You are me 25-30 years ago -- I was on 11 prescription medications including most of the ones that you have mentioned. I did not have my thyroid iradiated, but have hashimoto and hypothyroidism. Please take a look at www.stopthethyroidmadness.com -- for me 15 years on Synthroid made me more ill, rather than better...0 -
Hi there,
I was diagnosed with hypothyroidism at birth (I was born without a thyroid). I think my biggest struggle is that I'm not really sure what normal is supposed to feel like. I can tell when things are really off, especially after really fast weight gain or loss, but I've had a lot of problems with sleeping, really dry, brittle hair, and dry skin that have never really been resolved. I switched to a naturopath a few years ago, and have found that I feel a lot better than I did with a gp, since he really only looked at where my TSH was at, and if it was in range he didn't want to mess with it. Because I'm a lot heavier right now, I don't feel like my body is absorbing the Levothyroxine as well, and that's making weight loss more difficult.
Won't our ND prescribe Natural Dessicated Thyroid? Also, have you had your adrenals checked -- seems to me if you have not had a thyroid all your life, that your adrenal glands have been working overtime trying to support your metabolism.
Please check out www.stopthethyroidmadness.com -- there are lots of options to help you get rid of those symptoms, but you need a doctor that will treat your symptoms not just your lab tests.0 -
Picked up my refill for my thyroid meds.......always look to make sure it's correct. Always has been......except now. Thank goodness I looked. I take 75mcg. Pharmacist gave me 50mcg.
So when you get your meds......ANY meds......double check. People make mistakes.
I was diagnosed about 10 years ago.... my doc at the time, a young thing doctor, said she always tests overweight people.... anyway... so not the point of my post...
Paying close attention to your meds is a very important thing. I have been regulated with Synthroid for years.... In Jan, when our insurance renewed, the pharmacy gave me Levthyroxin. I didn't notice until I got home. The uptake of the thyroid meds is different depending on the brand, and the medication you are regulated on should never be switched by the pharmacy!0 -
Hi there,
I was diagnosed with hypothyroidism at birth (I was born without a thyroid). I think my biggest struggle is that I'm not really sure what normal is supposed to feel like. I can tell when things are really off, especially after really fast weight gain or loss, but I've had a lot of problems with sleeping, really dry, brittle hair, and dry skin that have never really been resolved. I switched to a naturopath a few years ago, and have found that I feel a lot better than I did with a gp, since he really only looked at where my TSH was at, and if it was in range he didn't want to mess with it. Because I'm a lot heavier right now, I don't feel like my body is absorbing the Levothyroxine as well, and that's making weight loss more difficult.
Won't your ND prescribe Natural Dessicated Thyroid? Also, have you had your adrenals checked -- seems to me if you have not had a thyroid all your life, that your adrenal glands have been working overtime trying to support your metabolism.
Please check out www.stopthethyroidmadness.com -- there are lots of options to help you get rid of those symptoms, but you need a doctor that will treat your symptoms not just your lab tests.
I was taking adrenal support, but a couple years ago my lab tests showed that they were fine without the support. I have only ever taken Levothyroxine, and don't know anything about the Natural Dessicated Thyroid. I also have PCOS, so I am taking a lot of supports, like GLYSEN and DIM.0 -
@amersmanders - if you've been on Levothyroxine for a long time - that is Synthetic T4. For most people, it does nothing to relieve any of the symptoms of hypothyroidism. I see you are going to a Naturopath, so I was surprised that he has not suggested switching to Armour or one of the other natural thyroid medications.
Please read: Why T4 Only Meds Don't Work - on www.stopthethyroidmadness.com. You are still very young and you can turn this around.0 -
Hi, I was diagnosed last week with hypo, and was immediately put on medication. I am a very driven, successful college student, and before we figured out what was wrong, everything felt wrong with me. I thought I was depressed, I thought I was suffering from some form of narcolepsy, I couldn't think straight, I couldn't keep track of even family obligations. My weight really crept up on me the last two years. It was just this May that my fiance and I made a commitment to each other to get healthy (hes a t1 diabetic). We hit the gym together 4-6 days a week, and have cut out all sorts of foods and even added in some new things (I gave up ground beef, GASP!). I felt so discouraged after five weeks and not losing a pound, or having anything fit looser. The diagnosis really explained a lot. I cant wait to have a normal metabolism again so weight loss may be attainable. In high school, I was so tiny. I don't want to ever be stick thin again, but the gut has got to go! With the work I have been doing, my legs are already looking significantly more toned. So one step at a time I guess, and a bucket of patience as I deal with this disease.0
-
Hi I'm Ami i'm 27 and was diagnosed with Hypo about 6 months after having my little girl. I'm only on 50mgs of Levothyroxine but don't think i'm having the right tests done. I'm still symptomatic but the doctor says I have post natal depression (18 months on) I think its just poorly managed hypo but there is so much conflicting info out there I don't know where to start!0
-
I am 34, soon to be 35, and I have been struggling with this thyroid issue for many years. When I was 19, I was diagnosed as having hyperthyoidism, anemia, and high cholesterol. The doctor put me on tapazol (probably spelled wrong) for the thyroid, zocor for cholesterol, and iron supplements for anemia. Over some time, my body started to react negatively to the medicine. The doctors solution was to iradiate my thyroid with radioactive iodine. What a nice present for a 20 year old. After the procedure I went on synthroid for hypothyroidism. As the years have progressed, I have been diagnosed with PCOS. This included a raise in my synthroid, plus an addition of cytomil and glucophage (metformin). I have good days and bad days. The bad days are really bad. Because of the anemia and hypothyroidism, I am always cold, always tired, and just feeling blah! I can look at all of the symptoms of anemia and hypothyroidism on a bad day and check off every symptom. Right now the possibility of having kids may not be possible because I have had two D&Cs and they have both came back positive for precancerous cells so I am now on megastrom I think. Just recently, I have been having pains in my sides. My doctor did an ultrasound and found that I have enlarged liver and spleen. Even though I am on all of this medicine that can affect the liver, he said the reason the liver is enlarged is because I am fat. It is interesting to say I just recently have pain and have an enlarged liver and spleen, but it has never shown up on any other ultrasound until now. Just frustrated with everything!
Please, if there's anyway to change doctors -- DO IT!! You are me 25-30 years ago -- I was on 11 prescription medications including most of the ones that you have mentioned. I did not have my thyroid iradiated, but have hashimoto and hypothyroidism. Please take a look at www.stopthethyroidmadness.com -- for me 15 years on Synthroid made me more ill, rather than better...
^^^^ I second what she said. Please, if at all possible try to get a second opinion with another endo.....0 -
I was diagnosed as hypo when I was 12y/o (25 now). I was extremely depressed, and when they finally checked, my TSH was 28.3.
Until recently I took the Levothyroxine, checked my levels, etc- but I never felt quite right (fatigue, dizziness, appetite, insomnia, etc.). I was always looking for that one thing that would make me feel "normal." This led me to try many different things like diet, exercise, drugs, etc. Had a couple of addiction issues. Occasionally I would be like "ok, I'm going to the doctor, I want to know what's wrong." Then I'd go in, tell him my symptoms and maybe get something for one of them.
Earlier this year, I switched to Armour thyroid. THISTHISTHIS is what I was looking for. I feel fantastic everyday. I eat better, sleep better, think better, etc. I have no desire to drink or do drugs, because the only reason I ever did them was to feel ok. And now I feel effing great! I'm still getting used to it, but man... friggen life changer.0
