Newly Diagnosed Please Help

I know it works because if I stop it I relapse in 36 hours. Heart rhythm goes first, palpitations and arrhythmia. My eyes get so sore I can hardly keep them open and I overheat drastically. My blood pressure goes from 116/60 to 220( plus) over 110. My arms break out in a horrible circular rash and I feel shaky, nervy, famished and exhausted but can't sleep at all ! My gums run blood and my throat feels like I am swallowing broken glass. Within 3 days I am a wreck !! Tried stopping once and lowering my dose once. Not happening !!

Jess, i suggest along with your thyroid Dr to get straight to an opthomologist who specialized in Graves disease to get your eyes looked. It was too late for me by the time I did that and I am paying for it now with double vision. Monitor both your eyes and your blood thyroid levels. Sorry you are feeling so crummy!

Hey guys, 

My legs have been very weak the past few days and the bottom of my left foot keeps getting warm, like I'm standing on a heater or something but it goes away within minutes. Have any of you experienced this? It's strange symptoms like this that make me worry something else could be going on.. I made the mistake of googling and keep seeing things about nerve damage but nothing directly related to graves. Thank you all so much for your advice, it's such a relief to finally talk to ppl who understand or have dealt with similar issues! 

Hi Jess

So sorry to hear of your suffering. Like you I was not diagnosed for several years, but things do get better.  I was on PTU (propylthiuracil) which I only had a side effect of it affecting my taste but no other side effects.  Might be worth discussing with your doctor.  Also you coudl ask to be referred to an endocrinologist if you aren't already seeing one - they are experts in thyroid. 

I agree with another reply, definitely ask to see an opthalmogist (eye doc) as it sounds like you have thyroid eye disease.  This usually gets better as your thyroid gets better.  Selenium tablets (or brazil nuts) can help apparently.  I have read that radioactive iodine therapy can worsen your eyes, so if I was in your posistion I would be careful about that option.  I had a thyroidectomy which helped my eyes get better.  The BTF website (British Thyroid Foundation) has lots of useful info and a doctor you can email for advice.

I have read that even once your levels normalise, it can take a while for symptoms to abate, so don't lose hope, things will get better.  I found being in peaceful places, like the countryside, very helpful for my mental health.  And beign with kind friends.  Treat yourself gently.

Also, you mentioned your legs feeling weak...muscle fatigue is a common symptom of over active thyroid so I am guessing it is that.  There are a couple of useful books out there...I found "Coping with Thyroid Problems (Joan Gomez) and Thyroid Disorders (Anthony Toft) very useful.

Im from california. Was diagnosed with graves 7 months after it started. Ate 10 times a day and lost 40 pounds in 7 months. Had anxiety, shakes, muscle fatigue. When I was diagnosed my heart rate was 140 beat/min. Looking back I think all those problems are simply explained. The thyroids just like a valve that releases what u need everyday. Mines was releasing too much. If your heart rates high your gonna lose weight just like working out. U wont be able to sleep. Your muscles weaken cause u never rest. In l.a. they either remove it or kill it with radio active iodine. I went with the iodine. Had 3 treatments 6 months apart. They said usually it only takes one treatement. Either way that iodine has a half life . What I mean is just like other radioactive material it will continue to release for a long time. Thats why u gotta get checked afterwards for life. Your dosages will change over the years. They just lowered my moms dosage after several years. Ive had it 12 years and my dose is finally right. That " take 50 five days and 75 for 2 days never worked for me either. My sister doesnt get checked very often and she suffered swelling of knees and joints till she got back on it.  I gained a 100 pounds the first year cause I didnt get my dosage checked. Also they might not sell the levothyroxine in the dose u need. I always felt like I needed a 60. But I could only get a 50 or 75. They also sell 88 1.0 1.25 and other varios sizes. Another not well publicized thing is that smoking will trick your brain into thinking u need more and your levels will go up and down depending on how much u smoke from day to day.  Im on 1.0 now after 12 years. Im swimming regularly and eating right. In the last 3 months ive lost 30 pounds. My thyroids finally right and all my triglycerides and cholesterol levels are cool. I still eat plenty but I stay away from fried foods, too much bread, and soda. I dont use any of that diet or fake sugar either. Ide rather have the soda than drink the diet stuff. Make a diet that will work for u. I stay away from dressing by using salsa. I dont try and starve my self either. 

I'll do a short version: I was diagnosed in feb hyper & graves... my labs were pretty high up there, so dr put me on methimazole 10mg/day+propanolol to lower my heart rate... well propanolol did lower my hr but i became a fat marsmallow(lots of water in me)... Then to make it worst 1.5 months in Iwas getting this itchy rash & muscles spasms... I told my dr, she then told me to get lab test done t4 and t3... well my lab said i became hypo....The dr wanted was giving me instructions to get ready for RAI.  I was reading about it and consulted my grave's dr and my grave's dr said RAi will make my Grave's worst(eye bulging).  So I told her RAI is not option for me.  I pleaded with her to "lower my dose & try it one more time" i think that's why I kept getting rashes I was over dosing myself...I had to figure this all by myself... I kinda stop taking the propanolol also but didn't tell her...I told her I take it once a day...So after stopping propanolol my water and weight started stabilizing...not a marsmallow anymore....I also started working out but my hr was still up high so I took it easy for a bit... Anyways she gave me full control of what dosage I need to be taking...if i start getting rashes I would stop for a day or 2 of methimazole then continue 2.5mg or 5mg per day... I even went onto 1.25mg per day(i bought a pill cutter)... Well I was seeing results my t4 & t3 were calming down but my tsh is not registering yet on the lab test.  Until I figured out a way on how to dose myself...Just recently a week ago my tsh started registering on the lab test... Of course my dr was happy and saying that weve finish chapter 1...were on chapter 2 with the tsh registering..she doesn't want me to go hypo...until tsh is stabilize then she said I might stop methimazole... In my head I dont really want to stop methimazole...Im happier now, less grumpy, more patience towards others and losing weight with my daily workout....  so about your rashes: if you're not eating a lot of foods with iodine salt in it lower the dosage and just keep going to get lab test every 2 weeks.... it's your body and you only knows how are you feeling... unless your dr had or has this kind of sickness then she/he won't really know how to deal with it...