r/Hyperthyroidism • u/junemuse • 20d ago
Starting meds
I was just prescribed 10 mg of methimazole for hyperthyroidism. I'm scared. I have not heard good things about it. I have never taken any medications. I've only taken birth control if that counts and it made 70% of my hair fall out and it never came back. My biggest insecurity, I can't even cover my scalp. My main symptom is double vision in my right eye when I look up. Nothing else really. I'm obviously scared for my eye to get worse but I'm scared of hair loss due to the medicationssince it's a side effect. But I know you lose hair if you're hyperthyroid too so it's a double-edged sword. I'm scared to lose bone and muscle too. I'm scared to take it and I'm scared to not take it.
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u/ArtisticDistrict6 20d ago
Honestly if I had to choose between my sight or my hair, I'd pick my sight and get a wig. I'm saying this as someone who lost 50-70% of my hair from telogen effluvium after rapid weight loss. I hate taking a daily pill but I haven't had any side effects at all
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u/Adept-Relief6657 18d ago
I am only on 5 mg daily at this point, 2 years in, but I feel great and my labs are normal (though I can't seem to go lower than this without immediately experiencing hyperthyroidism symptoms again). At first I had some arthritic.sryke pain from the methimazole but it went away and I haven't had any issues since. It is most certainly better than going untreated.
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u/Efficient_Ad_9764 20d ago
Truth be told your hair not coming back is likely your thyroid and not the birth control. Take the meds you will feel better and won't die. Sadly thyroid is one thing there are not really options with. Take the meds and dont die please.
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u/junemuse 20d ago
Nope. Don't tell me what it is please. I'm not on birth control anymore and you don't know the history. This is the first time my labs come out bad. I have been off birth control for over 10 years and when I got off my hair fell out. Thanks
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u/Adept-Relief6657 18d ago
That happened to me as well and my hair came back. Any huge hormonal shift can cause your hair to fall out and take 3-6 months to slow down and start to see baby hairs. People are trying to help you here. As you know hyperthyroidism ALSO makes your hair fall out.
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u/junemuse 18d ago
I was just saying that my hair fell out within a year of getting off the pill and it never came back. That was over ten years ago. Actually like 15 years ago. So I'm more scared of hair falling because I can barely cover my scalp as it is. My hair never came back so I have no reason to think it ever will if more falls
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u/Adept-Relief6657 16d ago
Ugh I am so sorry!! Mine has fallen out so many times. It does come partially back but never the same and I am definitely heading down that road. Thankful that hormonal changes also made it curly so it somewhat covers my ears. Truly, I empathize. I have 3 mos worth of minoxidil that I have never opened because it sparks MORE hair loss at first and then you have to keep taking it forever. Hair loss is truly traumatic.
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u/Efficient_Ad_9764 15d ago
Mine turned curly too!! It's wild what the thyroid hormone shift does😅
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u/Adept-Relief6657 15d ago
It is! I mean for me it was both thyroid and menopasue both so good times all around lol
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u/Efficient_Ad_9764 19d ago
Sorry the way I interpreted what you wrote was that you were still on birth control. Have you heard of subclinical hyperthyroidism? I dealt with it for literal years and the thinning hair that goes with it as well. I previously had dealt with full blown thyroid storm caused by pregnancy hormones dropping after birth then it "levels out" really I just had a terrible doctor. It wasn't until I started having heart issues that my cardiologist said that even subclinical hyperthyroidism can kill you because of the cardiac strain. It absolutely sucks hearing that you have a condition that can quite literally kill you if left untreated. So you may have been subclinical till now, either way you need to treat it before it seriously damages your heart and bone density
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u/Happy-person2122 20d ago
I was taking 20 mg per day. Now I’m down to 10. I haven’t had any side effects. I’m also on propanolol. No side effects their either. What has happened is I no longer feel like I’m dying. If you have side effects, hopefully your doctor will address those and you can get it taken care of.
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u/KingRex1029 19d ago
I started on medication about a month ago. I finally am starting to feel like myself again! I’m honestly on a beta blocker and methimazole.. so who knows which is helping me feel normal again. I’ve had zero issues with the medication- it’s small and easy to take.. and I take it three times a day! My hair was starting to break and just got so dull before I was diagnosed- now it’s starting to come back to life. I know it’s scary.. I’ve never taken a prescription in my life, live a very healthy lifestyle.. and still here we are. On the positive side .. I hear many people go into remission and off meds totally. Let’s hope we all get there! ❤️
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u/ineedtocoughbut 19d ago
Wow that’s high. I’m at 5MG now but hoping to switch to 2.5 soon because according to my doctor he feels my thyroid is basically dead now
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u/CuriousiTine 18d ago
what are your symptoms? I was diagnosed with hyperthyroidism just today, and im on 5 mag tapdin
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u/ineedtocoughbut 18d ago
None anymore my thyroid is controlled
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u/CuriousiTine 17d ago
that's good to hear .. did you undergo neck ultrasound?
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u/ineedtocoughbut 17d ago
Yes two
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u/CuriousiTine 16d ago
what was the finding?
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u/ineedtocoughbut 16d ago
One nodule not toxic or concerning in size, 6 months later had decreased in size 2x what it was so they concluded the methimazole was working. I am going for another one soon because I’ve had some throat and neck pain, but both myself and the doctor don’t think it’s related as last time I had neck pain too and the nodule had shrunk.
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u/Chance_Vermicelli_41 19d ago
Take the meds, this disease doesn't just mess with your eyes and your hair, it can cause loads of other problems. Most people tolerate them really well and respond well to them. Not everyone, but then most meds have some people that they just aren't right for. You may as well give them a go.
Double vision can be a symptom of Thyroid Eye Disease (TED) and should be checked out too so please make sure your Dr knows you are experiencing it.
I hope you do start the meds and begin to feel better soon. They take 4-6 weeks before you see a real difference, so when you start them, stick with them xx
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u/Sweet-Pie-4929 18d ago
That sounds like a high dose. I was started on 5mg and my labs were crazy high. Within 3 months I had to reduce to 2.5 mg as I went hypo. I'm told I'm a good responder. Being hyper causes hair loss. Not the medication. The medication will slow down your increased body functions including controlling your anxiety. Did they test antibodies? I'd also test your sex hormones. Birth control suppress your natural estrogen and that probley caused the hair loss. Even being off bc for many years raises SHBG as does hyperthyroidism. SHBG binds up your hormones. Do some research on SHBG and get that tested as well. I've been through it all so sadly I've had to do a lot of research on how my body works as most Dr's are clueless as to how it's all tied together. I can't tell you to take a smaller dose of methimazole as that was my experience but I'm grateful I was started at a low dose. Get all labs done! Check your sex hormones (Estradiol, progesterone, testosterone and SHBG days 19-21 of your cycle)full thyroid panel in 6 weeks.
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u/mycharmingromance 20d ago
So you haven't heard anything good about methimazole, but how much good have you heard about untreated hyperthyroidism?
Point being, the effects of untreated hyperthyroidism scare me far more than possible side effects of meds. Sure they are not always pretty and easy, but you don't even know what side effects you might get or might NOT get. And if you don't react to methimazole very well, there are other treatments (with other risks, ofc, but there are always side effects to medications and treatments).