# newly diagnosed and full of so many questions!



## Gimble7 (Nov 19, 2014)

I'm 29 years old and was diagnosed last month with hyperthyroidism. It's taken me 30 days to receive treatment due to being referred to 4 different doctors for having concurrent PCOS and also having been trying to conceive for 20 months now. Anyways, I am now on 60mg methimazole daily (20 mg three times). 
Tsh is below 0.01
Free t4 is 5.4
Free t3 is 22.6 
So my endo diagnosed me with severe hyperthyroidism. Fun fun.

I've been doing a lot of reading and it would seem my chances of remission with ATD are pretty slim. I have every symptom of hyperthyroidism there is. I'm a veterinarian and the tremors I have in my hands have now prevented me from performing surgeries anymore. My resting heart rate never drops below 110 and I'm so hot, hungrey and itchy all the time!! Lol. Anyway, my periods have become nearly non-existant. Tmi, I don't even need a thin panty liner for them the past three months they are so nearly not there. 
So if by they small chance I happen to respond to the meds, will I be back to normal? Will my heart stop beating out of my chest? Will my periods return? Will I stop sweating when it's 65 degrees outside?? How much can I expect to return to normalcy? My endo was of very little use to me at all. She only spent 5 minutes speaking with me and sent me out the door. I treat cats with methimazole all the time, but they can't tell me how many sypmtoms never go away!! Lol!! Any advice is greatly appreciated!! Thank you so much!!


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## joplin1975 (Jul 21, 2011)

I had antibodies indigenous to Grave's, but was not diagnosed so I can't comment extensively, but...

I wanted to say that the fastest and easiest way back to normal (and, I think, to conceiving (but, there again, I've actively avoided pregnancy for ages)) is surgery to remove the thyroid. Was that option not discussed?


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## Gimble7 (Nov 19, 2014)

She didn't give me options. She only said that if the meds didn't work then we would discuss surgery or radiation.


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## joplin1975 (Jul 21, 2011)

I'm waiting for the Grave's experts to weigh in, but my knee jerk reaction is to suggest getting a second opinion with an ENT surgeon. You might get a more proactive approach and, considering your practice is suffering as well as your overall quality of life, it seems to me that more proactive would be better.


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## Gimble7 (Nov 19, 2014)

I agree. I'm looking into my insurance today to see about scheduling another visit with a different endo. I really didn't like the lack of information I received from the last one.


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## joplin1975 (Jul 21, 2011)

Try an ENT. Seriously.  Endos will very likely put you on lots of trial meds and will lengthen the process significantly. if you are severely hyper, you'll probably end up in surgery anyway, so you might as well get the ball rolling and get a consult with a surgeon (unless you mean an endocrine surgeon...that's an option, but "regular" endos very often don't do surgery).

Good luck!


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## Gimble7 (Nov 19, 2014)

I'll look into that thanks


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## jenny v (May 6, 2012)

I'll second the ENT recommendation, you are more likely to get quicker action that way. I would also go ahead and start any anti-thyroid meds they give you, too. You have to get your body and thyroid calmed down before surgery anyway, so better to start as soon as you can.


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## laylabear (Nov 9, 2014)

Welcome gimble !! 
I was diagnosed with graves about three weeks ago now 
I'm in he meds you mentioned and I felt better within a week ! I actually thought I was normal before my diagnosis despite my hand tremors , thinking heart and constant anxiety . 
Once the meds got into my system ,, a week later I started feeling like the old me again and was so excite to be tired again !
My Endo spent an hour with me .. And so should yours to answer all your questions . If not get rid of them and get a new one ! In going through the private system to get the best care possible 
This WILL work for you ... Trust me .. But I have made a quick a serious decision to have a total thyroidectomy 
I know I have only have graves for around a month as my thyroid is tested regularly due to hereditary thryroid disease 
I have spoken to my Endo ... He is a great Endo and I have an appointment witht my surgeon today . I want to fall pregnabt next year with our second baby and this is the quickest and easier option to resolve the graves 
How long have you had PCOS ? 
Grave can affect the menstrual cycles , that's why your period is scant 
I'm booked for my surgery on 9 th jan .. It's your s a decision Ive made lightly but .. After reading about graves . Getting advice on here from graves veterans and wanting to fall pregnant it's much easier manage a hypo than a hyper 
My cousin just successfully had a beautiful baby girl naturally and she has been hypo for more than ten years 
Goid luck and keep us updated on your journey !


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## webster2 (May 19, 2011)

I will also suggest an ENT and maybe Endo shopping when you have time. It took me 3 endos to find one that "is human" as my ENT put it. Long term use of ATDs are really hard on your liver. Are you on a beta blocker too? I can see you have a lot of symptoms and must feel terrible. I was really hyper and had been for a long time, had a thyroid storm. The ATDs worked sort of but the beta blocker really helped calm my heart down. It seemed to be worse at night which coupled with the insomnia was debilitating. The ATDs were explained to me as a stop gap before the real treatment, either RAI or surgery. I had already been through the surgery, as it seemed like no big deal, I took that option. Plus, with eye involvement RAI is not the best choice. Either way, once you get that nasty thyroid taken care of, you'll feel much better and most likely be on your way to conceiving.

With my first bout of hyperthyroidism, my periods were as you described and we had been trying to add to our family. I had half of the thyroid out on 11/14 and on 11/12 of the next year, we welcomed our second child. My endo feels this is about the time Graves started for me but I went undiagnosed for over 20 years. I live in New England and rarely wore a winter coat.

I had surgery to remove the second half three years ago when I was 52. I have to say I have felt the best these past three years than I had in a long long time and am pretty much symptom free. I have one eye that has minimal involvement and is bothered by light.

I would really encourage you to see an ENT.


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## Gimble7 (Nov 19, 2014)

Thank you guys so much for your replies!! I feel so alone sometimes with this giant elephant on my back until I read about what other people are going through.
Layla- I was actually diagnosed with pcos at the same time my testosterone is 85 and I have wicked ovulation cramps. I don't get multiple small cysts like most women but I did get one very large cyst (9cm) earlier this year. I also had severe endometriosis prior to that. Lol I'm a mess!!

Webster- I am not on beta blockers, my endo "didn't feel I needed them". I really need to find a new Dr. I hate thinking I'll be on these meds for life. It really does seem easier to just go straight to the surgery!!


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## laylabear (Nov 9, 2014)

Gimble We are here for you 
These forum has kept me sane 
Even if you do have a total thyroidectomy you will have to take meds the rest of you life so you have the thyroid hormones in your body 
But trust me it's not a big deal .. My mum , my nanna , my aunties and all my female cousins take them and lead a normal healthy lifestyle !
From what I have heard it is better to be on thyroxine for the rest of your life than anti thyroid drugs 
I have a great Endo . I'd recommend him but I doubt your in perth Western australia !! 
I'm looking forward to my surgery so I can move forward wih my life and get back to normal and continue baby making !


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## Gimble7 (Nov 19, 2014)

I actually have several family members on synthroid meds. I just happen to be the only one who managed to get hypER lol!! I hope your surgery goes well and wish you pregnant soon


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## Gimble7 (Nov 19, 2014)

A quick update today. So I thought maybe my meds were starting to kick in. I though just maybe I was a little less hot. A little less hungry, a little less itchy and so forth. But yesterday everything was amlified again. Any of you have that? Meds just up and quit on you? This morning is the same. Last night I sweat all night despite sleeping with no blanket, no clothes. Woke up this morning and went back to my routine of walking outside and sitting on my porch of 15 degrees (f) to "feel normal" before I could even think about getting dressed. Does this mean my meds for sure are going to fail me? Or is this a normal hiccup in things?I've searched around for a new Dr and no one is taking new patients or their newest appt time isn't for at least a month so I'm stuck with my endo for now. I did call her office and she has scheduled me an appt next week to talk to her again and to repeat thyroid labs sooner with liver panel and a CBC. So maybe we'll talk a little more about TT. Your thoughts again are appreciated! Thanks!


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## laylabear (Nov 9, 2014)

I've been on my meds for three days 
I have good days and bad days..
Some days I feel so relaxed , normal , tired even .. And my heart doesn't thumk and race 
Other days I feel all racey , anxious , and have tremors in. My hands 
These are the days I have had a lack of sleep due to my baby walkng throgh the night often , drinking caffeine (coffee) and eating foods high in carbs and sugars 
I don't know if this is relevant but they are the associations I have made 
Don't soscount the meds just yet 
How long have you been on them? The thyroid stores elevated levels of hormones due to the over activity in the body for at least a month , so sometimes it takes a while to regulate and for the meds to kick in and really work to their potential 
In really looking forward to my TT in jan so I can manage this disease a lot easier !


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## Gimble7 (Nov 19, 2014)

I've been on meds for a week. I just called my endo back and she got on the phone with me to answer my questions. About time she stepped up!! Anyway, she said once I get my levels down I can get my thyroid out I'm just sick of all of this already and I can't imagine dealing with it for the rest of my life and that's exactly what I told her!


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## jenny v (May 6, 2012)

It can take longer for the meds to work for some people or it may be that your body has sucked up the meds and now needs more to keep things calm. It's good that your going in for labs again, hyperthyroid patients need to do labs more often than hypo patients, esp. in the beginning.


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## webster2 (May 19, 2011)

The ATD didn't do too much for me. The beta blocker helped calm the raising heart some. I got a fast track into surgery, six weeks from diagnosis. I was pretty hyper still but eternally grateful for their quick reaction. I did experience thyroid dump but small trade off, IMHO. Doctors do try to get a patient not quite so hyper before they operate, my numbers didn't move much. I started out undetectable and got to something like .001 TSH in the short time I took methmiazole.

I am glad your doctor is talking about treatment plans before you go off the deep end from Graves and its lovely symptoms.  I thought my time with active Graves was the biggest challenge physically and emotionally that I have ever experienced and I had raised two teenagers! You might want to lay off exercising right now. The heart is stressed. Does your endo do surgery, or will you have to wait on a referral?

I was the only hyperthyroid person in my family too. No one has Graves either.

Hang in there, it does get better!


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## Gimble7 (Nov 19, 2014)

I'm definitely not exercising. At some point this summer I had tried to start back up after recovery from abdominal surgery in April (I'm a bit of a mess lately) but I was so out of breath each time within minutes I gave that up quickly. I can't even carry a laundry basket across the house without huffing and puffing now. Today has been such a dollar coaster of emotion for me. I've wanted to cry, scream and laugh within minutes of each other. I'm so over all this already lol!!


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## webster2 (May 19, 2011)

Yup, it doesn't take much to wipe you out. The emotional roller coaster was hard on me and the folks around me. Are you still working? Try to rest as much as you can and hopefully, you'll be on your way to feeling better soon.


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## Gimble7 (Nov 19, 2014)

I am still working. Luckily my coworkers are very sympathetic to me and will work hard to keep me comfortable. My husband doesn't quite grasp everything and will get annoyed with me sometimes. He catches himself calling me lazy around the house, I want to do more chores to help him out I really do but they wear me out so damn fast. He's learning though. I help where I can. He's scared that I have to have surgery again (my last one did not go well at all) and he's also frustrated that we may never have kids. We've tried for so long so I feel his frustration.


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## laylabear (Nov 9, 2014)

Sorry gimble I meant three weeks not three days ! 
Gimble ... It can be emotional but try to stay positive through this journey and hopefully your meds will kick in soon 
Xx


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## webster2 (May 19, 2011)

I am glad your co-workers are helpful. I may have terrified library patrons. I hate to think of it.

My husband was shell shocked. I went from a fairly nice calm person to a raving lunatic at the drop of a hat. We had lost many early pregnancies and when we were expecting our son, my husband was reserved. He said he wasn't sure he could take another loss. I was amazed after the partial thyroidectomy, it was 2 days shy of a year that we welcomed a 10 pound boy. (11 years and 11 days after our daughter was born) That little gland can cause quite a ruckus in so many of our body parts and reproduction is one of them. So hang on, until you get this thyroid evicted/ ablated.

I had a spinal fusion shortly before being diagnosed with Graves between that and the thyroid storm, I was at a low point and could hardly function. I did work but didn't do much else. You will recover and most likely feel better than you have in a long time. I can't speak of RAI but finding the correct medication after surgery took awhile but, even so, I felt much better. I was amazed at the calm, no heart racing, no tremors. no mood swings and just wonderful feeling overall.

Tell the husband, this won't last forever and things will be better.


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## jenny v (May 6, 2012)

Yeah, this is pretty much the worst it can get and you can only go up from here. Make sure you're consistent with the ATDs and keep your endo up to date on your symptoms. It's physically and emotionally a wringer, so give yourself as much of a break as possible, too.


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## webster2 (May 19, 2011)

Jenny V, I would disagree...a thyroid storm is the worst, IMHO.


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## Andros (Aug 26, 2009)

Aaaaaaaaaaaaaaw; you need to get back on track and quickly. Surgery is your best shot. Fast come back and we all will help you help your doctor to get you on track with the proper thyroxine replacement meds.

And of course, you do know a lot about that!

Wishing you the best here!

Hugs,


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## jenny v (May 6, 2012)

> Jenny V, I would disagree...a thyroid storm is the worst, IMHO.


webster, I meant to reassure the poster that the symptoms she's having now are probably the worst she's going to feel and it will only get better after surgery. Thyroid storms are relatively rare and since she's on ATD's it's extremely rare she will have to deal with that.


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## Gimble7 (Nov 19, 2014)

Quick update. I have had my 2 week labs pulled after being on 60mg of methimazole a day. My t4 is normal, t3 is still 9 (down from >22) and tsh is still <0.01. So my endo wants me to stay on 60 for another week before decreasing to 40. I have another set of labs in 2 weeks and hopefully after the new year I can get transferred to a surgeon and get this bit of trouble cut out of me! My symptoms are still there, but "dampened". And I have good days and bad days. Emotionally I'm still all over the place. My hair has started to fall out.. Did any of you experience that? It wasn't doing that before I started methimazole but I've been noticeably shedding recently. Hopefully when I decrease the dose that will stop. Anyway, thank you all for your words of encouragement!


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## webster2 (May 19, 2011)

Hi,
I only experienced shedding when I was hypo. I do think symptoms can cross over. Maybe someone will have something else to share. I am glad the edge has been taken off a bit for you. The emotional roller coaster nearly did me in. hang in there!


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## jenny v (May 6, 2012)

I get shedding whenever I have any kind of thyroid movement, hyper or hypo. It could be that your body is just now reacting to the thyroid rollercoaster and that's why you're just now losing hair. It stinks, but it isn't permanent and it will eventually stop and grow back in.


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