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Thinking that Topamax caused my hyperthyroidism
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Thinking that Topamax caused my hyperthyroidism

My Thyroid was in perfect condition a year ago. My doctor checked it and everything was normal. He checked it because I was having heart palpitations.  This past summer my doctor put me on Topamax for migraines. I was up to 100 mg a day for four months. I lost so much weight - got down to 105 lbs....my vision was blurry and my hands were tingling all the time. Also, I could not find simple words during conversation. Needless to say, I slowly stopped taking Topamax. It was just after that when I started feeling so awful.  I read some articles about an 18 year old who was put on Topamax and his TSH went down to .01 (mine is .002!) In the article his doctors took him off the Topamax and put him on Tapazole. In two months his thyroid returned to normal.  Has anyone heard about this?  
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168348_tn?1379360675
You can try to copy and post your ? on the Dr. Patient forum with Dr. Lupo .. here is the link
http://www.medhelp.org/forums/show/120

Cheryl
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Avatar_f_tn
I would really like to talk to you. I have the same problem!
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314892_tn?1264627503
I was on Topamax for migraines exactly one year ago.
However, I was finally diagnosed as hypothyroid.
I lost weight and had the tingly hands and feet as well.
I believe it started my asthma back up and increased my anxiety.
I was only on 50 mg, but they told me to stop cold turkey- not a good idea. I had bad anxiety and insomnia for 5 days after I stopped.
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Avatar_f_tn
So you could have become hypothyroid from the Topamax. I don't know why they would have told you to stop cold turkey? That’s just crazy. Some Drs are so uninformed. One Dr started someone on Topamax at 200mg. again, not a good idea, this in not a medicine to messing around with. It should be slowly increased and decreased. How are you doing now? Did your thyroid return to normal?
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314892_tn?1264627503
I have been, in retrospect, mildly hypo for many years. So the Topamax didn't cause it.
The Topamax was given for supposed "Migraine Associated Vertigo" diganosed last year after having a mis-diagnosis of Meneire's Disease over the last 13 years.
My main symptom was vertigo and dysequalibrium. I now know this is due to my hypothyroidism. Every doctor checked me for it, but I was told my TSH being in the upper end of the reference range was "normal". I didn't think it was!
I am now on Synthroid and feeling much better w/o too much dizziness.
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Avatar_f_tn
I'm glad you are feeling better that’s the main thing. I'm trying desperately to figure out what is causing what, with me. I sure wish I could find other people who have had this problem with Topamax. I have found two other people. When I read posting on Topamax, people start having hair loss, fatigue, cold feet, etc.. then they go off Topamax. I wish they would check their Thyroid levels first. But I guess there really isn't a point since they are going off the medicine and the side affects should go away. I'm one of those "get to the bottom of things" kind of people. If I was a Dr. I would be running those tests because I would want to know if that’s why people’s hair was falling out. Hair loss in not a symptom of Topamax, but it is of Hypothyroidism. See what I mean?  
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314892_tn?1264627503
I am in agreement with you that people need their thyroid tested more often.
But doctors also need to recognize that many of us (me) are hypothyroid even with relatively low TSH values. Mine was 6 when finally diagnosed after years of strange symptoms.
I asked every doctor I saw for years if my symptoms were  being caused by my slightly high TSH. They all said no.
I hope you get more answers. You are already ahead of the game for doing your own research. I had to totally advocate for myself, sadly. I am wiser for it, though. Thanks for your kind thoughts on being glad that I am feeling better.
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324691_tn?1302555442
I am not sure if this will help or not , but I will offer my story as a point of reference and let you decide. For the last 6-7 years I noticed subtle changes in my body. My knees hurt at certain times, lower back, tired, unable to sleep, extra energy, no energy etc. All of the symptoms bothered me for about a day or two and then disappeared. Most of the time I thought it was my imagination  or just the "weather, age etc." As time passed some of the symptoms started to run together, so two or three things would happen at the same time. Still, I blamed it on age, menopause, flu bug, etc. Finally in 2004 I had back surgery. Within a few months I felt like a million bucks and thought I had a new lease on life! But eventually, little by little most of my symptoms returned. By 2007, it seemed every join hurt in my body. Instead of 2-3 symptoms , I had a long list and every week I could add a new complaint. My back surgeons attributed my symptoms to spinal cord damage and I went form 2 medications to 6. Pain pills, high blood pressure pills, anti-seizure meds even though I had no history of seizures, and the list goes on. By  July of 2007, I was at my wits end. I had a racing heart, high B/P, anxiety, depression and my body ached from head to toe. My gums were sore, teeth hurt, shakey (shaky) after every meal, out of puff, and I had to use a wheel chair just to go shopping. Eventually, I started to withdraw from family and friends because I got tired of hearing myself complain about how lousy I felt. I believe they thought I was looking for attention.....Finally,  In december of 2007, I had enough...I consulted with a  doc that ran another thyroid tests (scan) and he found out my thyroid was filled with several cysts,a complex tumour along with hot and cold nodules. In January of this year I had a TT. Since then, I have had a terrible time with my meds and adjusting the dose. However, all of the other symptoms stopped! Especially, the aching joints, feeling tired, stomach pains etc. Later I lesrned I had no spinal problems from surgery... Seems this little thing called a thyroid had been making me sick  for a  long before I or my doctor even knew there was a problem with it. What I learned is; this disease is sneaky and everything we ingest in our systems  affects a diseased thyroid long before we even know about it. I have never been the type of person to just accept a prescription and take it just because my doc thinks I should. I have been more of a lets find out why this is happening and lets fix it, type person. However, the docs I had were not interested in listening to me or looking past the obvious to find the real problem or cure. Now I am working overtime to get off of all of the meds they gave me. My journey helped me to see that every new drug they handed me masked the symptoms and because of this it took 7 years to find out what was wrong with me..... The wear and tear on my body has been horrific, not to mention the mental strain. I really don't care what the problem is, we should never have to work this hard to get a doctor to hear us, believe us or heal us.....Like I said before, this is just my story and my idea to share with you all...Best of Luck.
  
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314892_tn?1264627503
Thanks for sharing your story. I am sorry that you, too, went through all the misdiagnoses for so long.
I was given anxiety meds, sleep meds and an antidepressant b/c my doctor would not treat what I believed was a thyroid condition. He said my TSH had to be over 10 before he would consider treating and he would run the antibody tests I asked for, but it wouldn't change his mind!!
3 psych drugs given instead of 1 safe little thyroid pill, when monitored correctly.
I am now in the process of weaning off the anti-depressant and the only thing I will be on is Synthroid- my goal!
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324691_tn?1302555442
I just read a article about TOPOMAX (topamax) and the side effects are exactly what your experiencing. Iwoukd investigate....seriously. Go to the topomax (topamax) web page .......
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Avatar_n_tn
I started taking Topamax (I thin kit was 25mg a day) in late '06.  Just prior to that, I had had an MRI and there was nothing there- no thyroid nodules. I stopped taking Topamax April of last year (I topped out at 50mg/day), and when I had another MRI at the end of that month, I had 3 thyroid nodules. I had one removed, and go back in July to see if the others have grown.  Topamax seems to me, to be the only cause for the nodules to show up within a 6 month time-frame.  
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Avatar_m_tn
I had no Idea that Topamax caused birth defects such as cleft palete and so many more issues in new borns.  Why hasnt the FDA banned this drug?  I read about a warning on http://www.recallwarning.com/topamax-birth-defects.html.  So sad.
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Avatar_f_tn
Hi, I have been on Topirimate (50mg) for 7 weeks and have recently had my thyroid function tested. I have now been called into my docs after my bloods are back (I only had my thyroid levels cheked because I was on thyroxine for years and was told to stop as my body wasnt absorbing the thyroxine no matter what dose I was taking (50-375mg, my bloods would come back the same???) but now it looks like topirimate may have caused  my thyroid to go a little haywire again!
I have suffered with underactive thyroid symptoms for so many years that they seem perfectly normal to me now (cold hands and feet, dry skin, hair falling out, lethargic with zero energy) and even when I was taking thyroxine I felt the exact same so I was not worried about stopping taking the drug to be honest. But now that I have terrible migraines, am dealing with the side effects of topirimate , am currently sat here with a heart monitor on for the next week after just returning a 24 hour blood pressure monitor, to get a phone call from my (clueless) GP to say that I need to go in and discuss my thyroid bloods has sent me slightly into a blind panic....do we know for sure that there is a link between topirimate and thyroid function? I would love to go to my GP with some kind of ammunition rather than let him put me on thyroxine again when it is not being absorbed by my body! Any advice would be greatly appreciated, thanks
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Avatar_m_tn
I went on Topamax for Bipolar II and anxiety. I do have to admit I knew about the weight loss effect and wanted to try it partly because of that. So many of the mood stabilizers cause weight gain. The first few times that I tried it, I did lose weight, but I also had severe gastroesophageal reflex (heartburn) even though I was on Prilosec. I ended up going off of it. I think the third time I tried it, I no longer had that side effect. I did also have the side effect of having difficulty with coming up with simple words in the middle of a conversation (you know that's why they call it Dopamax) as well as blurred vision. Topamax does have a side effect of pupil dilation, so glare from bright lights is also a problem.
I did see a positive change with my conditions, so I took the bad with the good. I started at 100mg and had increases over time. I also began to have terrible lower back pain and eventually joint pain to the point that it would take me a minute to actually stand up straight in the morning. It would take several minutes for my fingers to flex. My doctor gave my generic vicodin and referred me to a rheumatologist. He told me I had fibromyalgia. I was so angry, because I knew that that was not what I had!!! I also saw an endocrinologist on my own during this time and he did tell me that it is OK to go for the goal of being between 1.0 to 2.0 TSH. GP's usually are OK with higher #'s than this. It's really just best to be at a # where you feel healthy!
Say Yay! for vanity, because I (and my mom) noticed that my hair was falling out.  I already had an inkling that it was hypothyroidism, because I'm pretty good with medical diagnoses. Went to a dermatologist and he said that I was probably right. He did the tests and it was hypothyroidism.
I'm at menopausal age, so my doc just figured it's my age and oh, it probably explains some of my depression and lethargy and all my other health problems. My doctors dismiss me sometimes, because I have a lot of health issues. I was born with severe allergies, asthma, and eczema and have been on medications (some with pretty heavy side effects),like corticosteroids, for all of my life. (Seriously thinking that may have something to do with my depression, bipolar II, and anxiety.) And my father had a liver transplant and went through medical hell for about 8 years. I worked in mental health for 15 years. I know a lot about medications and medical issues. I try to be an informed patient, but some doctors don't really like this.
Anyway, here is the real catch that I know topiramate effects the thyroid. About two months ago, I was at my PCP and he asked my about my dosage. I realized at that appointment that I was taking the wrong dosage. I was only taking 200mgs instead of 300mgs what I had been taking (what my psychiatrist was prescribing). After that I started taking the right dose, started feeling much better psychiatrically, but my joint pain came back like gangbusters. Saw my PCP yesterday and told him my theory. He thought it was a possibility, checked side effects on the web and didn't see this. Said he would order labs then forgot. I've called back to remind him. Will report back when I get results, but I think I have a pretty good idea.
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Avatar_f_tn
I have been taking topomax (topamax) for about 9 months.  In the beginning, I had the typical side effects.  Tingling hands and feet and weight loss.  My Dr wanted to slowly increase the dosage to 100 mg a day.  As I did this I started to feel body aches. The smaller dosage seemed to help with my migraines so we stuck to 50mg a day.  Lately, my back pain and body aches have returned, I feel very irritable, and I notice my hair is noticeably thinning and becoming very dry and brittle. ~ along with unusually dry brittle nails and dry skin.  I am reading that these are the same symptoms of hypothyroidism.   Has the tpopmax caused thyroid issues or just the symptoms of the disease? If I stop taking topomax (topamax), will my thyroid return to normal? Or has topomax (topamax) created more problems than the migraines I started with?  Does anyone know how long it takes for topomax (topamax) to get out of your system?
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Avatar_m_tn
It's probable that your thyroid will return to normal, since you've been on it for such a short time. But it may also depend on your age. All my thyroid problems happened at the same time I was peri-menopausal AND taking Topiramate. But I was on the Topiramate for quite some time and had been on a much higher dose. You caught your symptoms quickly, so I think that you'll be OK.
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Avatar_m_tn
ElleC467 reporting back.

I was WRONG, and I'm honest and strong enough to admit it after that big long post!!!!!
I was actually finally at my goal TSH of being between 1.0 and 2.0, coming in at  1.45 mu/ML. So it seemingly was not my hypothyroidism causing my symptoms of  joint pain, and some other symptoms I had at the time (that my doc dismissed) fatigue, dry skin, etc.
But what I do wonder is was my body adjusting to my TSH being at that low of the range. My joint pain and most other symptoms went away after about 2 1/2 - 3 weeks.
So I'm not really sure what was going on. Increased the Topiramate but  TSH actually went down or at least was within normal range.
I know inflammation in the body (joints) can occur due to infection or a shock to the body. I was at the time doctoring for a mass on my ovary that needed to be removed. This tended to occasionally cause PAIN and irritation to my body. Maybe that. Had that surgery. All gone now, no malignancy!
Anyway, that's my input!
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8709157_tn?1399437219
WHOA! YOU SOUND LIKE ME, ITS BEEN 7 YRS ALMOST TO THE DATE. I'VE HAD DR'S TREAT  ME LIKE A DRUG SEEKER, AND THOSE WONDERFUL PA'S ADVISED ME TO LEAVE THE DRUGS AND ALCOHOL ALONE. I WAS ALWAYS IN A FOG, A CONFUSED INTROVERT, I WAS HAVING THYROID STORMS THINKING I WAS HAVING THE WORST POSSIBLE MIGRAINES EVER! NOTHING WORKED AND THINGS WOULD  WORSEN WITH  STRESS I FELT LIKE I WAS GOING TO GET A WHOOP'N BY THE STEP MOTHER, I HAD THE WIGGLES, OH MY GASH MY HAIR, MY KNEES,MY HEART, INSTANT WEIGHT &,MUSCLE, AND THE MOST FRIGHTING WAS LISTENING TO AND FEELING THE VESSELS IN MY HEAD THROB AND CALL ME CRAZY BUT, I HEARD THE FLUID SHIFTING IN THE LEFT EAR I WAS JUST A NORMAL LOOKIN TRYING TO KEEP UP WITH THE NORM WEIRDO. IT WASN'T UNTIL I STARTED ACTING A DAMN FOOL AND DEMANDING CERTAIN TEST THAT LEAD TO SOME ISSUES BUT NEVER HITTING THE REAL ISSUE AND THEY STARTED POKING FUN AT ME I HAD TO GO DUE TO FLASH BACKS FROM A HOSPITAL STAY AS CHILD I WAS TOLD THAT IF I DIDN'T SHUT UP THAT THE NURSE  WOULD PUT PILLOW ON MY HEAD TILL I'D STOP BREATHING. ANYWAY MY KNEW DOC TOOK 1 LOOK AT ME AND RAN TEST DIDN'T HAVE A CLUE WHAT SHE SAW SHE KINDA MADE ME MAD BUT WAS SO RELIEVED,NOW I HAVE A VOICE DUE TO NOT TAKING MEDICAL FOLKLORE FOR AND ANSWER TO MY QUESTION "WHAT'S WRONG WITH ME?" I FOUND OUT 4/14 MY MEDS ARE HELPING.
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8709157_tn?1399437219
I FORGOT TO ADD THAT THIS WAS GOING ON FOR ABOUT 14 YRS BEFORE TOPAMAX. I PUT A HOLD ON MY LIFE DIDN'T UNDERSTAND WHAT OR WHY I WAS DOING IT, I COULDN'T KEEP A JOB I THOUGHT I HAD THE ADULT FORM OF A D D. I WAS COMPLETELY OVER LOOKED BECAUSE OF A HEALTHY APPEARANCE AND WITH THAT BEING SAID GAVE ME, A CLEAR UNDERSTANDING OF WHY PEOPLE WE THINK ARE HEALTHY JUST FALL OUT AND DIE! IF THYROIDS CAN HAVE SUCH A BUTTERFLY AFFECT ON THE MIND AND BODY, WHY IS THE THYROID LAST ON THE CHECK LIST?  I
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