June 30th
2008
5:05 PM
I was diagnosed with graves disease last year, I had a really acute case that turned me into a total nut job.
In October after going through several thyroid storms and the doctors not being able to keep me stable with medications, I had a full thyroidectomy in October.
I started on .100 mcg of levothyroxine and then the dosage was gradually decreased, I started having a lot of random body aches, mood swings, lots of muscular pains and no energy.
They ended up raising my dosage and detected that I had a large vitamin D deficiency, after several treatments of taking 50,000 units of vitamin D, and also adding my levothyroxine dosage I started feeling better. I still have mood swings here and there, and feel sad periodically, but the last month or so I've been feeling more fine than I have in a long time. They have me on .170 mcg of levothyroxine for two months now. Last week I started getting headaches more frequently, and one of the times I got this nose bleed.
This past weekend I got a headache, and then later that night I had another nose bleed.
I don't usually get nose bleeds or this many headaches so I'm a little concerned.
Also the last time I was getting headaches and constant nosebleeds was when I was really hyperthyroid.
As far as the doctors go, I'm in between insurances and quite honestly I've been frustrated with both my pcp and endocrinologist...
June 27th
2008
6:14 AM
I have just been switched to Synthroid (by my Endocrinologist) after being on Armour for 4 years. I have to tell all you out there that think "Armour" is the save all drug..and believe me I am not an advocate of Synthroid either because I have not been on it long enough to know what possible side effects I might have..however when I first started on Armour I felt like I did before I had been diagnosed with Hypothyroidism ..then about 1 yr ago I started to gain rate rapidly like 40lbs in 6 months feeling sluggish, off and on skin problems, puffy hands, face, feet,hives, pimples in the back of my head almost hive like,some hair loss that is noticeable to me as I have had very thick curly hair all my life now it is getting noticeably thin and It is making me very nervous...My Endo put me on .75 mcg Synthroid and .5mcg Cytomel which she calls a "controlled Armour"..Armour does not stay consistent with your T4's and T3 levels and that is what cause my thyroid to become suppressed and these are the symptoms I was experiencing...she also put me on Spironolactone which is a mild diuretic to lose the puffiness in my face,hands,and feet and so far so good...Like I stated earlier, I am not an advocate of Synthroid or Armour our any drug for that matter, I just want to find what is right for me and stick with it..and if Synthroid doesn't work for me, then I will try something else...Just remember one very important thing.."You" are the only one who knows how you feel and Dr's are not God they can't fix everyone that is why its very important to read about your disease and find out what things might work for you..I suggest getting this book I bought that was recommended to me by my Endocrinologist called "Screaming to be Heard" Hormone connections women suspect and doctors still ignore written by Elizabeth Lee Vliet, MD...its a fabulous book and I am sure all you women can relate to this book...its all about us....Most important thing is to stay healthy eat a well balance diet and exercise..also find out about the foods that only worsen thyroid problems...
-- By alleekat219 | Reply | (3) replies | Send Private Mail
June 24th
2008
1:53 PM
I have been on synthyroid for the past 4 months and my doses have been increased from .75 to .112 which I am currently on. I weigh 92 pounds, which is my normal weight, but it seems this new increased dose has increased my appetite (I always had a fast metabolism) given my palpitations, flushing, sweating, high and low blood pressure and generally feeling overstimulated. It's been two weeks since my dose was increased and I felt better with the lower doses. My endocrinologist keeps increasing my dose since my TSH levels are still not in the right numbers, but this new dose is making me sicker than I was before. Could this new dose be too high for me.
-- By jackcharles | Reply | (1) replies | Send Private Mail
April 30th
2008
2:39 PM
I have had Hashi now since 2000, i got it when I was still in high school. They though that was rare that this would occur at such a young age. No one in my family had it, well not quite yet. I was the first to get diagnosed. My gyn mentioned that there is a link between autoimmune and preeclampsia. I had a terrible preg. I take synthroid now well the generic. And I do not feel much better at all. But people who use Armour should be careful. My endocrinologist strongly disapproved to this. It is Pig tyroid. This is from a site "The prevailing opinion is that everyone converts all the T4 needed into T3 automatically, and that drugs such as Armour and Thyrolar are outdated and old-fashioned at best." Also does not mention much on Hasimoto patients like myself. I would like to try it though to feel better. The side effects are higher as well. Esp long term.
Unfortantly, what works for one, does not always work for another person. So though some have problems with there synthroid others do not. Also it takes a while for you to notice a difference with this. IF you take it regularly at the same time and follow instructions on eating as well as not take it with vitC then you should be experiencing something. If not then you really need to get a new endocrinologist. Regular doctors are not made to deal with these issues, though they try, you need to see a specialist. Just remember that you know how you feel and if Synthroid is not working for out then change.
April 22th
2008
5:25 PM
I suggest to anyone that has Hashimoto's Thyroiditis (type of Hypothyroidism) to have a blood test done for Celiac Disease. There has been research done linking Celiac Disease and Hashimoto's Thyroiditis. Celiac Disease can be controlled by a gluten-free diet (wheat, rye, and barley free). In the US, not many doctors recognize/know of this link. I have been hypothyroid for 20 years (had Hodgkin's Disease (cancer) - radiation/chemo at age 16) I have 2 sisters with Hashimoto's Thyroiditis and were iron and B12 deficient. I was diagnosed with Hashimoto's Thyroiditis 3 months ago with iron and B12 deficiency. I have been on a gluten-free diet for 2 months now. My dosage of synthroid (levothyroxine) was 175 mcg and now is down to 137 mcg. I hope that I am one of the lucky ones that will have their antibodies to their thyroid normalized (no more synthroid!) I have a couple of days left before my next blood test and I hope that it goes down more. I am feeling better now than I have in a very long time. I have attached a link for those of you interested. It is an endocrine article from Finland outling the link between Celiac Disease and Hashimoto's Thyroiditis (among other things). I hope that this helps some of you. http://edrv.endojournals.org/cgi/content/full/23/4/464
-- By sherrie77 | Reply | (3) replies | Send Private Mail
April 15th
2008
9:23 PM
I've been on Synthroid for 8 months after gaining 10 pounds in two months. The symptoms started to appear when my Mom was very ill. Doctor said it was caused by stress and started me on 25 mcg of Synthroid. My reading at that time was 5.56. I had blood work done every 4 weeks,and the numbers are going down (1.8 last reading), but so is the quantity of my hair, which I see all over my white tile. My weight hasn't budged even though I am dieting. My doctor upped me to 100 mcgs. My blood work is not good - low white count, low lymphocytes, borderline anemic. Mom died, and I didn't get any better. I feel sick all the time and it's difficult for my husband to understand how bad I feel. I've tried to get my doctor to prescrive Armour, but he doesn't even return my phone calls. When I see him in the office, he keeps telling me it takes time. I hate living this way and want to stop the pills completely.
-- By tennis01 | Reply | (4) replies | Send Private Mail
February 8th
2008
10:06 AM
Hey, First off I would like to say thank you all for posting, I was just diagnosed with hypo. I was placed on 50mg then increased to 125, I felt terrible so I cut it in half. I take the pill at night, but I still feel all the symptoms you guys feel, I woke up this morning with no voice, hoarse. My tsh level was 13, I am going back to the doctor for more blood work this week. I think I my ask to be switched to another brand. I hope all of you will soon feel better.
-- By stephanie827 | Reply | (2) replies | Send Private Mail
September 11th
2007
10:39 PM
I was born without a thyroid gland so I can't compare the way I feel now to the way I would've felt with a thyroid. I've been on Synthroid my entire life (22 years), and I'm up to 112 mcg now. I am very skinny (5'5", 104 lbs) and feel constantly fatigued no matter how many hours I sleep, what I eat, and how much exercise I get. I periodically get pain in my hip joints, heart palpitations, and intense mood swings. My thoughts race but I have very little physical energy. I feel restless and gloomy almost all the time for absolutely no good reason. My doctor tells me I'm depressed but I honestly have no reason to be depressed and I wish she would see it as a symptom instead of a diagnosis. I graduated from a good college, I've got a job I like, I have friends, I enjoy life and my hobbies, yet I feel overwhelmingly sad. This does not seem like depression to me.
I find that after I do aerobics I get a tightness in my chest, which makes me worry about my heart, but again my doctor doesn't seem to think this is cause for concern. I have been irritable/fatigued for YEARS and I suspect I'll feel this way for the rest of my life. The worst of it started when I hit 16 years old and started the 112 mcg. My tests are always normal and it frustrates me that my doctor disregards my symptoms. I've tried other doctors, but they always send me away with my 'normal' test results. Can anybody help?
-- By lexlurgee | Reply | (9) replies | Send Private Mail
July 18th
2007
1:17 PM
Had total thyroidectomy 9 months ago and started taking Synthroid immediately thereafter. For the last 4 months I have noticed significant hair thinning. I have always had very thick, healthly looking hair but now it's just dry and brittle all of the time. I always feel tired and bloated around my stomach area in particular. I have always been a size 4-6 but have inexplicably gained 6 pounds in the last month. Is there an alternative to snythroid without these side effects?
-- By delaney | Reply | (2) replies | Send Private Mail
July 16th
2007
7:46 PM
I've been on synthroid since October 1996. My ankles are always swollen. That didn't start til I started the medication. My Endocrinologist keeps telling me that it has nothing to do with the meds. My TSH levels are constantly being taken. He says to cut down on salt. I don't eat much salt and besides, I know people that practically eat whole pigs and they don't have swollen ankles. Has anyone experienced this? Any suggestions, I'm desperate!!!
-- By lane | Reply | (1) replies | Send Private Mail
June 26th
2007
7:39 PM
i've been on synthroid for 9 years. started at some low dose and gradually went up to112 mg. get extreme itching all day everyday if i don't take allegra for that.not a rash just itching. that doesn't bother me as much as the fatique. every joint in my body aches all the time. sure there are better days but fo rthe most part it's bad. tried physical therapy and chiripratic care but no avail. they ended my sessions. my legs get sooo weak and my feet burn lower back really aches. sometimes muscle cramps. i'm very negative towards my loving family and it hurts me to do so. can't seem to keep upbeat. soo tired all the time.
is it the syntroid? i used to be very energenic and a doer. now i have spurts of activity in the morning , but then i just can't get motivated. help me any suggestions?
July 8th
2004
8:48 AM
I'm a 25 year old female and I was diagnosed with Grave's Disease during my pregnancy at the age of 21. The following year I was treated with radioiodine and subsequently was placed on synthroid. Since I have been on the medication (3 years now on varying doses) I have experienced severe to moderate anxiety, alarming hair loss, loss of appetite, piercing headaches, dry skin, fatigue, leg pain (mostly at the joints), dry mouth and eyes, and I feel I react very slowly (thinking and physically). THe most predominant symptoms at the moment are the dry skin which has never gone away, I still notice my hair hasn't stopped falling out at the rate it was when first starting the medication, sleeping isn't very restful, anxiety attacks and tight chest. I have told my doctors both primary and endocrinologist of my symptoms and was basically told to put on lotion (which I do religiously), see a psychiatrist, and buy a better mattress. I could almost make out a question mark hovering over my primary doctor's head as she thought of what could be the source of my afflictions.
When i had my yearly visit with my endo recently, he became agitated by my question asking and basically brushed me off. He told me point blank "There are no side effects with this medication". I asked, "None?" and he insisted, "None." I found out later that week (He's an Associate Professor at a local University) by a research statement I found on his website "Review of Graves' Disease outcomes comparisons, antithyroid drug therapy vs. radioactive iodine treatment". He's funded by the makers of Synthroid. Needless to say, I'm calling around for a new Endocrinologist. In his haste to administer radioiodine, (he said my white blood cell count was very low due to the PTU i was taking for Hyperthyroid, mind you, I had an infection not too long before his findings) he may have miscalculated how much radioiodine I should be given and now I am taking varying doses because he can't seem to get it right. I just found out today that soy bean decreases absorption of levothyroxine sodium. I have been taking my synthroid with soy milk for the past few months, which may account for my thyroid hormonal change. I'm thoroughly disappointed.
-- By leti1028 | Reply | Send Private Mail
May 3th
2004
8:08 AM
PLease be careful. I have been on a suppression therapy dose of synthroid for over 8 yrs. I had thyroid cancer and my endocrinologist said I needed to keep my tsh between .3-5.6. For the last yr I have been feeling awful. My heart rate was arnd 145, I had shortness of breath, muscle aches, hair falling out, could barely eat but I gained about 30 lbs because I was swelling up from edima. I had almost every symptom of being hyperthyroid. My endo said I ran on high test!! I thought I was going crazy. I was on 2mcgs of synthroid. My tsh level became .009 and then became non-exsistent(.oooo) I now have dialated cardiomyopathy, and congestive heart failure.
So if you are not on the correct dose you can have very serious side effects. Make sure your levels are checked on a regular basis. If you are not feeling right make sure someone , like a dr listens to you and hears your symptoms. I had repeated ly told my dr how I was feeling and he said I needed to be suppressed. to prevent cancer returning, well after almost dying from heart failure how suppressed should someone be????? Now My entire live is suppressed....
This registry is a place to share positive or negative side effects of using Synthroid. If you directly experienced a side effect while using Synthroid, then we encourage you to enter it here. Please note that entries here are the experiences of individual users, and in no way means that you or anyone else will experience the same side effect, since the same medication affects people in different ways. Please always contact your physician.
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August 7th
2008
12:27 AM
Hi,
-- By janetf8689 | Reply | (4) replies | Send Private MailI am 50 years old. I was diagnosed with as hypo at age 39. My doctor prescribed Synthroid at 25mcg and I have (proudly-ha!) worked my way up to 125mcg. I was always one of the "lucky ones" who could eat any and everything and my weight stayed the same. I am a busy mom of two and a first grade teacher, so the 33 lbs. I have gained since age 39 has not been due to diet changes or sitting around with a bag of chips in front of a TV all day. I also questioned my doctor about this and he just brushed it off. Well, I am tired of not feeling good about myself. My life is in good order except for my weight. I want someone to take this seriously. Should I see a specialist rather than my regular internist?
Wow! I think I just lost a little weight telling you great people about this!
jf