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Just diagnosed with Hyperthyroidism

christy1228
  • By christy1228
  • Posted January 11, 2009 at 9:55 pm · 20 replies
  • In Hyperthyroidism
  • Shared with the public
  • Edited January 11, 2009 at 10:17 pm
0 Recommendations

Well let me begin by introducing myself, I'm Christy Snapp and I live on the East Coast. For the past eight months I have noticed some strange things that have been happening to my body. I started noticing my hands would shake, at times I could not hold a glass. My mother suggested that I make a doctor's appointment. I went to see my gastro doc for my Ulcerative Colitis and I told him about how badly I would have the trembles in my hand. He paid no attention to my problem. Through the next several months the trembles got worse, I would have night sweats that I would have to change my clothing. The next thing I noticed was that i could not tolerate heat. I would leave the A/C set in the sixties. I have problems concentrating and remebering things. If I do any activity that requires running or a little exercise my heart reaces and I would start to lose my breath. Slowly my hair has been coming out. My throat feels full like there is a lot of mucus in it, I can't keep it clear. I went to see my OB/GYN last week for a cyst on my ovary. Luckily there was no cyst. I told the doc about my trembling and asked me a few questions and he said he was not sure but he would to blood test. The next morning I spoke with the doc by telephone and he said we hit a homerun and that my levels were through the roof. He prescribed medications for the thyroid and medication for my heart rate and the trembles. I go back in a month for more blood work. I am very scared that it's going to be worse than before. Should I get a scan of my thyroid? I am clueless and I need some help to cope with this. I don't believe that my husband understands what I am going through. How should I explain to him how I am feeling. Any help would be appreciated.

Explore topics in this discussion:

Exercise Cancer Tylenol Surgery Ulcerative colitis Pregnancy Anxiety Prednisone Thyroid cancer Graves' disease Hypoparathyroidism Stress Tremor Hyperthyroidism Goiter Sweating Diabetes Synthroid Pain Memory Heart attack Hypothyroidism

20 replies

WANT2BEHAPPY

I have hypothyroidism. I see an endocrinologist every 6 months to have testing done.I am finally at a point where my levels are good. Don't be afraid, look at it as getting back on track. I would recommend that you see an endocrinologist (specializes in thyroid and diabetes)

tina474

Hi Christy,
Hi, my name is Tina I am also 31 years old. I so feel your pain. In 03 I developed my first hyper symptoms and they went unnoticed until the end of 05. My big problems were the heat intolerance, breaking out in hives, anxiety, etc. All the symptoms that goes with hyperthyroidism. The end of 03 I went to the hospital because the hives were getting out of control. I had no idea what was going on with me. They told me it was stress. No blood work,nothing. Just it was stress. So I suffered through the symptoms for 2 years having no idea until I went for a routine pap at Planned Parenthood. At the end of my visit I briefly explained my sympoms as I was walking out of the door and she said hmm sounds like your thyroid. Heck, I didn't even know what that was at the time. So she referred me to a clinic because I had no ins.. They confirmed I was hyper. Put me on PTU, I think I had an allergic reaction to it because my symptoms got worse so they switched me to Methimazole. I was ok on that for a while. For some reason even though I was hyper I had issues with losing weight. I had about 40lbs I wanted to lose. Tried everything. One day I got tired of it and stupid but I stopped my meds telling myself I'll see what happens. Two months later I became pregnant. I swear the Methimazole works as a contraceptive. lol. Once I became pregnant 1/07 everything went normal. I even had a small goiter (I think it was due to the thyroid supressent meds, still not sure because goiters usually happen due to lack of iodine or hypo patients). Anyways my goiter went down and my hyper symptoms went away. I wasn't on any meds throughout my pregnancy. Baby was fine too! Two months post pregnancy I developed hyper symptoms again and with in four months the goiter came back bigger. They warned me symptoms may disappear then reappear after pregnancy worse. Got back on my meds but it didn't really seem to help. I think I just had ignorant doctors. They didn't even want to do a thyroid scan or ultrasound on me. Which now I know all you should need is an ultrasound, pretty sure with the thyroid scan you have to be off your meds for a while and can make things worse. Most doc's I've talked to said ultrasound is the safer approach. At that point 5/08 I was told he (my doc) didn't need to do those test he knew it was Grave's Disease. (ultimately he should of done the ultrasound immediately to show if their were nodules. They can grow in the back. Last week I had my very first ultrasound 4 doc's later, can you believe that, ridiculous) But I do not have cancer and no nodules.) Anyways, shocked me. What the hell was tGraves, I was thinking. Sorry to go on but it is a lengthy story. So here I am with a growth growing out of my neck, trying to stay stable on meds with a doc wanting me to do RAI. Unless you have thyroid cancer, and I am no doc, I would not advise to have this done for anyone. Something in my gut told me NO NO NO! And I'm glad I listened to myself. I had about 4 endo's telling me to have the RAI done as I'm sure you will as well. That is there proedure of choice. I just couldn't do it. The only things aval is meds, RAI or thyroidectomy. Unless your one of the lucky ones where it clears up by themselves. I would advise you to get a TPO antibody test done, which doc's don't like to do either, why, not sure. This will tell you if you have an autoimmune disease. I had one done and it came back 4800 and high should only be like 40. So I have Graves, autoimmune disease. Getting back to the RAI. What this does is it melts your thyroid. They usually have to do it in small doses so your going back a second time for it. It is ablating your thyroid. But if you have an signs of the "eye" disease they should never ever do this on you, the RAI. But even if you did have the RAI and it didn't work which in a lot of cases do not your only other choice is thyroidectomy. With the RAI it can take months to see the effects. Good or bad. A doctor trying to do a thyroidectomy on a RAI patient is extremely risky and difficult. (a few surgeons have told me this themselves so I'm not just spitting out my original thoughts of it lol)So it hurts your chances at the surgery. Or could possibly. Myself, I have had enough of this thyroid of mine. I still have a goiter, which is hugely embarrassing, even though I've seen bigger I'm aware of mine. Still have difficultly losing weight etc. So 2/20 I opted to have the total thyroidectomy. It's not working anyways. So I am now on a mission to find my right supplement after the surgery. Synthroid alone does not work well. I am going to try Armour which I hear great things about. I could go on about this if you'd like but will spare you for now. All I could tell you is your getting a head start on your hyperthyroidism. YOU HAVE TO BE YOUR OWN ADVOCATE THOUGH. You can not singly allow your doc's to make all these decisions for you. Each person is different. You have to find what is right for you. Educate yourself as much as you can. You'll find it confusing at times and overwhelming others. There is a lot of controversy out there. With having Graves, I am terrified of getting the eye disease and feel lucky I have not yet. (And if you have hyper the chances that you have Graves is pretty relevant.)Which they say Graves differs from the eye disease but not always. You can develop it later in Grave's not always in the beginning. With having my thyroid removed I am removing the antigen for the eye disease as well. You must keep your thyroid levels stable and not make the mistake of yo yo'ing meds, like I sort of did just out of frustration. I think that might have contributed to my goiter. Anyways, best of luck and if you have any questions feel free to write.

Tina

kewhite

I too had thyroidectomy. Recently had a small problem with hypoparathyroidism during the stomach flu, but my doctor told me he thinks my parathyroid glands will regenerate over time, especially since I had been stable for over a year since surger (11/08). I agree with Tina that RAI is not a good option. They hardly do it in Europe anymore. It can cause other problems. I had the eye disease as well, and that cleared up completely about 2-3 months after surgery. I don't feel like a did in my twenties, or before I had my baby (all of this started after pregnancy), but I feel way better than I did in the 3 years living with undiagnosed graves disease. Best of luck to you and let me know if you want to talk.

jedd82600

Hi christy, I am new to this and I dunno I think your stuck in what seems like a whirlwind like i was... not to get ahead of my story let me tell you about me first. I went to the doctor because i had this sore throat that wouldnt go away. the sore throat was my main concern then the doctor asked me if I had any other symptoms...I said well if you want to count the shaking hands the racing heart sometimes even skipping beats.the shortness of the breath.T he fatigue the being tired after just waking up the cold sweats at nite the cant stand being hot the crying over nothing the cant sleep .. the forgetting of simple things like where I kept the coffee.and how do I make coffee. something I have been doing for about thirty five years since I married my husband whom drinks about 6 pots of coffee a day. I dont drink coffee at all but I couldnt remember how to make it when i have made it that many times a day every day...I knew something was wrong. well the doctor said maybe the hand trembling jitters was from too much caffiene.well the only caffiene i get is from maybe a choclate bar once a week...I dont drink soda or coffee maybe tea once in a while..but not enough for the jitters.so anyways she sent me for bloodwork...three days later she calls me and tells me I am hyperthyroid.She sends me to an endoctrin he started me on tapozol. sent me to get an ultrasound.. the ultrasound revealed I had several noduals on my thyroid..I asked if they could be cancerous since cancer runs in my family..he told me no that not to worry that there is only a 5% chance of these noduals being cancerous...dont worry be happy...told me I worry to much...that was in august 2008 I went to see the family doctor.. couldnt get an appointment with the endoncologist until october 2008.. he sent me home and rescheduled an appointment for 2 months.. dec 2008. well when i went to see him in december now my throat was so sore I was having a very hard time swallowing it was getting worse... I asked again about if he was sure about the cancer he told me again to quit worrying..but sent me to see a surgeon.went to see the surgeon jan 2008..he scheduled surgery for jan 19th wanted to know why the doctor had never checked to see if the nodules were cancerous..he said it should have been done..I was scheduled for a complete thyroidectomy.. well when i went for my pre admittanance testing...the family doctor had called me two days before surgery telling me that the test for my heart came back with problems and she could not approve the surgery so she cancelled it and sent me to the hospital for a stress test on my heart.. well the stress test came back alright and they reschedueled my surgery...I had a complete thyroidectomy on jan 30 2008 havnt been back to see the surgeon yet still have the stitches in my neck...and still have very sore throat and still hard to swallow...go to see the surgeon on the 19th of feb...but low and behold...the pathologist called me yesterday...well you know the cancer i wasnt to worry about cause there was only a 5 % chance of it being cancerous...well include me in that 5 %.. 3 millimeters cancer they say stage 1 but now im worried I still have the sore throat and its still hard to swallow...be persistent with the doctors if you think there is something wrong keep asking about it dont stop till you get answers...im not...still asking questions....as for your husband sit him in front of the computor and let him read a few lines he will understand....oh also forgot even though i was hyperthyroidism...they say you usally lose weight well tapozole makes you gain weight since oct 2008 till my surgery i gained almost 70 pounds...now i have to lose weight cause i am now boarder line diabetic more problems....if you would like to talk email me jedd82600@yahoo.com

jackie12

yes, I would get an ultrasound AND iodine uptake scan on your thyroid. trust me, as I said, I'm not hypo nor hyper, but the tests all revealed I was borderline hyper. I even had 3 biopsies before deciding to have surgery. If you have nodules, they need to monitor them carefully...especially since you are hyper. the only symptom I had different from being hyper was my intolerance to cold.

christy1228

I finally have an appointment with an endo on March 24th. In the meantime I had allergic reations to PTA and Methimazole. So I'm no longer taking them some of the reactions I was having was itching, hives, and severe joint pain. The joint pain was so bad I could'nt get out of bed so I dealt with it with a heating pad and Tylenol. I'm to the point now that I going to tell the doctor just to do the surgery. Can anyone give me any insight into this? Does anyone regret having the surgery? All help would be appreciated.

matildaooo

Hi Christy I am from the UK and have just been (almost) diagnosed with hyperthyroidism, was googling and came across your story, my mum was also hyper and had a thyroidectomy about 20 years ago, she was left slightly hypo and has to take tablets for the rest of her life, thyroxin - just one a day, she has a blood test to check her levels once a year but apart from that is perfectly normal, I will say though the scar from the operation looked pretty nasty for a while but she had no complications afterwards. After the birth of my second son 8 months ago I had my blood pressure checked and they noticed my pulse was way too high, I hadn't thought much of it but I have a tremor which is really bad if i haven't eaten for a while and am ALWAYS hungry and when I went to the doctors he said I also have retracted eyelids, he said with the family history I almost certainely have an overactive thyroid, he sent me for a blood test the results of which I pick up on Tuesday so will see precisely what's going on, my point for replying was that if it comes to it I would have no qualms about having surgery if that was the best option for me, my mum was told it was the best option for her and it certainly worked out that way.
Good luck with whatever you decide.
Leonna.

matildaooo

also meant to mention that I seem to feel the heat way too much, after I've had a shower for example I have to stand in front of an open window to cool off or I feel really hot and faint, I also find myself getting too cross too quickly and I'm not that kind of person, I can hear myself getting snappy but don't seem to be able to stop myself, I sat my husband down in front of the computer and googled the symptoms etc for him to 'prove' I'm not just getting to be a crabby wife, maybe you could do the same Christy

kesag1

hi Christy, it looks as though many have responded and so since I am new to the website thought I would write in as well.
I was diagnosed with Graves last April after having really weak muscles (I am a very active woman) and sweats, itchy skin, bad memory and soooooooooo tired. Chalked it all up to bad sleeping habits....have always had irregular sleep habits...my fault LOL and being a mom. Tired because.... weak because.... sweating because..... heart pounding.... etc.
I went on tapolzol, and it regulated my heart rate so I could work out again but.....my thyroid was still way over the top. So they want me to preform the RAI and when they told me I couldn't be around the kids for three days after I had the treatment for cautionary measures I had to think, what are they putting in my body.
I am upping my dose of meds for now and am researching alternatives. I have heard many ideas and so the thought of gaining more weight...no thanks. I am not overweight yet...but it has been where those last friggin 10 lbs won't come off and I am so tired...man
Email if yu like...you have many responses so I will keep ya all posted.

christy1228

Ok so I finally seen the surgeon and my operation is scheduled for June 5th. Thank goodness I'm ready to have this done and behind me. My doc still insisted on the RAI but he backs me 100% on either way I choose. I feel alot better that he hasn't shunned me after not following his orders. The surgeon that he set me up with has done over 10,000 Thyroidectomies and no mishaps in the last 14 years. I have my pre-op on May 28th and I start a large dose of predinosone and Iodine on the 31st to supress the thyroid. I am very anxious and ready to start my new life without hyperthyroidism.

Pixels02

Hi Christy - I'm so excited that you have found such a wonderful and experienced surgeon! They say to go to a surgeon that has performed at least 1,000 thyroidectomies. Did you request having a plastic surgeon to do the stitching?

I'm 31 yrs. old, and suffering from hyperthyroidism too. Actually mine has progressed to Graves disease. I'm currently searching for a surgeon in Chicago.

christy1228

Pixels02 thanks for the post. I have not thought about a plastic surgeon to do the stitching, that's a great idea. I was in a motor vehicle accident September will be ten years and I was partially scalped the ER docs brought in a plastic surgeon. As you can tell in my photo you can hardly see my scar. I will ask my doc if they can do the same. It does make a difference. Thanks again and good luck with your search and let me know how everything goes.

Pixels02

No problem, my endocrinologist suggested I use a plastic surgeon so I thought I might just mention it. :) Your surgeon did a wonderful job, no, you can't see any scaring. They're truly miracle workers.

I'm not having my thyroidectomy till after the summer. I wish you the best of luck with your surgery, I'm sure all will go well! Please keep us posted...I'm anxious to hear what recovery will be like.

micli

I had a partial thyroidectomy in Dec of 2005. I don't regret the surgery. I feel much better now than I did being hyperthroid, however, the surgery and recovery have their own challenges. Take things one step at a time and realize in the long run you'll be better off. The plastic surgeon closing is a great idea- my scar is not so beautiful. If you have any questions- I'm glad to help.

christy1228

Thanks Micli for the post and to let everyone know I'm going to keep everyone posted. Today is Saturday 6 days left until D-Day. I'm starting to feel a little nervous since this past Thursday which I had my pre admission test. The nurse spent an hour with me going over paperwork and telling me what I was going to be put through the day of surgery. Next I was sent to have blood drawn and and EKG. The EKG showed alot of T waves. That could be from my rapid heart rate. The nurse's at the hospital were very nice and comforting. They reassured me that everything would be o.k. and if not they would take care of me. The hospital that I am having my surgery is great. I have been there a few times. They have always treated me with great care. I start prednisone on Sunday and Iodine on Monday to supress the thyroid. Well guys I will write back about Wednesday I know by then I'll be a nervous wreck. As always take care and thanks for all the great responses to my post.

christy1228

Well it's 5 minutes after midnight day of surgery. I have to be up at 4:00am to get my day started. I'm not really nervous about the surgery but rather being put under. I really dislike getting on the table knowing I'm about to be put asleep with heavy medications. Well I hope this goes well. Hopefully I will be back home on Saturday. Take care everyone

christy1228

Today is 3 days after my total Thyroidectomy and it went great. I had a small problem wakening up after surgery. I stayed until Saturday at the hospital. I did have low calcium levels which are being corrected with medications. I feel so much better after having the surgery. I don't have any symptoms of hyper. I am a little sore but I can still do my normal activities such as cleaning the house. I can't believe how much energy I have now even though I just had surgery three days ago.

Nanners

Hi Christy,
You answered some of my questions before and I really apprecited it. I just had a partial thyroidectomy and everything went really well. I only had to remove the left lobe and the isthmus. I go back and forth between tired and perky but I feel like I will be back on the go very soon. I was not nervous at all and I have to say it is partially because you and many others I spoke to were so confident and encouraging. Thanks to everyone who posts to this site and I hope everyone keeps feeling better!

inspired09

I was diagnosed with Hyperthyroidism in November 08. I had an ultra sound done of my thyroid and discovered that I have 7 nodules in my thyroid. A byopsy was done and all are are non cancerous. In April I had a heart attack. While in the hospital a thyroid test was done and TSH results were normal. I just had another test and according to my primary the levels were low and was put on lovothyroxine. I then went to my cardiologist for a check up and he read the same test report my primary did. My level was not low. It was high and my Dr. read the results incorrectly. My hair is falling out by the handfulls. My finger nails have all broken and are brittle. My skin is dry. Constanly shaking. I also find I am having rambling thoughts. Always cold during the day and warm at night in bed. I should be thin with my thyroid levels but I'm not and I am having an extremely hard time loosing weight. I walked 3 miles the other night and weighed myself in the morning. I gained 2 pounds.

Grizz

So I have been through all your posts and still wondering about those of you that have had the surgery. Are you all doing well? I have had graves since '06 and have had allergic reations to both the PTU and Tap.My endo doesn't agree to me taking either of them at this point. I don't want to do the RAI if I dont have too. Has surgery not gone well for anyone here? What is the recovery time and how hard was it to figure out meds after that. I freak myself out to think I will have problems with these meds. I can't even take otc pain meds with out reactions. HELP!

Lisa

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