[CMoore416]

in reply to: Uptake scan numbers? #1170140

My dr called and there were no nodules or goiter and thyroid looked great. Only mild hyperthyroid which I will take over what it was. Mine was just one scan after 6 hours

[CMoore416]

in reply to: Uptake scan numbers? #1170138

Yes my dr will call to or row with results – hopefully. Will keep you posted! I know not to trust the techs! Lol

[CMoore416]

in reply to: Back to square one… #1170130

I think you need to give the meds longer time. I didn’t see results unto a good year on it. Then I stayed normal for 3 more years then came off and have been good. I felt so much better to when it regulated. I know that they want to do surgery as a last option but I know several ppl who RAI didn’t work in one try. I know it sucks dealing with it all all!!

[CMoore416]

in reply to: Back to square one… #1170123

How long have you been on meds? I know my thyroid was bad bad bad but now is good after 4 years on PTU. I went off meds one year ago

[CMoore416]

in reply to: Newly diagnosed GD – Having a hard time accepting it #1169661

There are less invasive treatments to do with GD. Don’t let any Dr push you into RAI until you’ve tried meds. I was diagnosed with GD in 1997 and it went back normal, then hyper again, then normal and then the third time was horrible so I went on meds. My uptake scan was 91%! I stated with Tapazole was allergic so I went on PTU which worked. I was on it 4 years then came off when a warning for it came out. I was retested for antibodies test (you should have this for confirmation you have the antibodies for Graves) and it came back negative. I have been medicine free for over a year and am tested regularly. I have been experiencing fullness in my neck and going in for another uptake scan but hoping its nothing. I had drs just push radiation and nothing else. Always find an ends who will work with YOU! And I have to agree be thankful you have no real symptoms. I only had slight ones early on. Third time – I had EVERY symptom plus mental ones! I was a mess to say the least. I also got pregnant with my second because my cycles were messed up from it. Good lucky
Christina

[CMoore416]

in reply to: confusing? recently diagnosed..anyone?? #1071393

Just wanted to give you a little bit of my experience. I was rx with GD about 10 years ago when I was 26. I had to "bout" if hyper that regulated on its own without meds. The first time it just went back normal. It took me 2 years to get pg with my daughter but had no complications. About a year and half after the birth – I had my 2nd Hyper round. This time it made me ovulate on day 7 – thus resulting in getting pg with #2. I was monitored and levels regulated (they say pregnancy helps) I had my son 2 weeks early – they think it was a complication "maybe" from GD. About a year and haf after that birth – I had my 3rd Hyper round – this time worse than ever. After many crazy days (literally) I went on Tapazol (Methimazole) and was fine for 2 weeks. I come down with MAJOR hives for 10 days and had stop the tapazole. I switched to PTU and have been on that for 3 years. I have asked if it sok to be on for so long and my Dr’s feel t works for me so why change (I currently am on a low dose for maintaining the levels Im at) I often wonder if RAI would be better but maybe I will choose that in the future if this stops working. I never had any other side effects or issues on PTU.

Hang in there – but dont get pg until your GD is in order. Pregnancy (and motherhood) is stressful and stress and GD dont work well together.

Feel free to email me if you want to chat or vent. I have been through hell and back!! It will get better!!
Christina

[CMoore416]

in reply to: Will it end? #1071586

Hi –

First off Im so sorry you are feeling this way. Hang in there – it will get better. I have had GD for many years now and Im currently stable on a low dose of ATD’s. I have had "normal" levels now for almsot 2 years. Am I normal again?? I would say Im a new normal. Things we experience in life change us. Every day were changing. Having an illness like we have – changes you. But you will see a new normal again. For me – I have up and down days. Sometimes Im sad because I want to be the OLD me. But she is gone. I no longer have major panic attacks, major phobias, and many symptoms. But because I did for so long, I became super sensitive to my body’s feelings. I feel my heart do weird things sometimes and the anxiety became a normal, habitual thing for me. I worry about my health A LOT! I have some minor panic attacks but I know how to handle them. I usually go through my days with no issues but its never gone from my mind. Sometimes I cry about it, but MOST of the time, thigns are good. You will feel good again. You maybe will still have some ups and downs, but the major stuff will go away as your levels regulate. It takes a good year I think. Plus you need to constantly monitor your levels to get the right dose. As your levels get into normal, you will need less meds. Good luck. Hang in there, cry and PRAY! The Lord will give you the peace you need inside and will get you to the other side. For me, thats ALL that got me through and here today! Ive learned something through all this too. Peace and happinesss are what I want most in my life. The rest of the stuff is just extra!! Good luck!!!

Christina

[CMoore416]

in reply to: POLL: what positive things have come about in your life… #1072381

Ive learned to be more understanding of other’s problems – and phobias. After being terribly afraid of everything while super HyperT – I learned that everyone has problems. Now, I can be more more helpful to others and more sympathetic. Its taught me a lot about life and I now calue being happy and healthy way more than anything else in life.

[CMoore416]

in reply to: Desperately need advice #1072701

Ive been on PTU for 3.5 years. Started at high dose and now have maintained normal levels on 100mg a day for well over 1.5 years. It works for me. My endo left and the new one pushes RAI. I wont go back. My current GP thinks the same – if its working – why change. I worry sometimes about the long term effects of ATD’s but I am feeling better and maybe would hope to be in remission too one day.

[CMoore416]

in reply to: side effects #1072785

I took that first and was allergic too it. I had severe hives for 10 days. I had to come off it and switch to PTU. Never had a problem with PTU. Good luck

[CMoore416]

in reply to: Need encouragement:( #1072767

Im so sorry you are feeling this way! I have been meaning to pm you again but have been so busy!

I too want to go into remission, but currently I am on 100 mg of ptu a day (1 50mg tablet 2x a day) and I hate taking meds long term (been 3 years now) I know where I have been and was is NOT where I ever want to go back to again. When my thyroid was at its worst, I was in the ER every week with something. Thinking I was dying of a heart attack and having MAJOR panic attacks. I was so miserable that my children were suffereing. My daughter started showing major stress signs (some that became habi and she still does) and after a week of her acting like she had OCD – the ped told me that if I wanted to fix her – I had to start with myself. I cried all the time, yelled, worried and was afraid to go anywhere. I developed abnormal and odd phobias. I would ruin family outings because the clouds scared me. My marriage almost fell apart and still suffers from it. I had every possible physical symptom – and even went severly HYPO and had all those symptoms too, then back to Hyper (all in 3 months) while they adjusted medicine dose. Now after 3 years – I have been on 100mg of PTU for about 1.5 years and it works for me. I stay in normal ranges, but barely. Dr’s feel if I come off, I will just fall back into Hyper range. I still have anxiety, and worry about my health ALL the time. That is the one thing that GD has ruined for me. I long for my old carefree self back. I still have anger issues and am easily frustrated, tired and stressed. But most of the symptoms have gone and all the phobias. I still have anxiety when I travel or do things out of my comfort zone and some days are worse than others, but overall I know I mush better. Do I want remission? Sure, but not at the cost of my sanity. Before, I didnt want to live. It was just too much. I begged ppl to commit me to a mental hospital. Now I try to go day by day. I think its hard having no one who understands, but being here helps because I know no one knows truly unless you have been there. Message me whenever you like. I know what its like to be a mom of small kids and struggle with it. My husband doesnt understand either. He still probably has no clue what a thyroid is!

Hang in there – avoid coffee and caffeine (MY habit) since it will stimulate you more.

MB – Thanks for your nice words. I am a mom of 2 nd find it so stressful and at times hate being a mom. I know its my GD winning as I do want to be a great mom who enjoys the kids. I will definetely start trying to find one fun thing a day in my kids! I want to kick GD butt! I admire your journey and being a mom of 4 through it all. You should share your tips!

[CMoore416]

in reply to: Frequent Bowl Movement (FBM) and Hyperthyroidism #1073012

Ive been on PTU for amost 3 years and I still have these episodes. My husband is always annoyed because it can be after eating anything, anywhere. Its just random. I think through all this I have IBS too or something because my stomach is always having issues on and off. Sorry I cant be much help! Good luck

[CMoore416]

in reply to: Bad Thoughts #1073169

Im sorry you are feeling this way. This is how I am a lot of the time. 3 years ago – when my thyroid was as whacked out as it could be, I had terrible anxiety and panic attacks. I was afraid of the silliest thing – weather was my big one. I live in So Cal where we have mild weather, but I was consumed by fear of fog and thunderstorms. I made it through foggy season and monsoonal weather in dire fear. I became OCD – checking the weather report every 10 minutes, looking outside at the sky etc. (almost funny now) I also had every symptom imagineable – and was always worried I was dying. I was afraid to go anywhere "far" for fear of not being by a hospital. 3 Years later- my levels are normal, and Im not afraid of weather anymore (although fog still makes me nervous) However – the fear of soemthing being wrong with me has stayed somewhat. I seem to feel every bit of energy and flutter of my body. I get a chet pain and I think my heart is failing. Headaches – brain tumors, etc etc. I still panick on drives to places – which makes taking my kids on local trips hard for me (but I suffer though it for them) I know medication would help me, but i hate to medicate if I dont need to. I dont want more side effects that make me worry. So I suffer. I long to be normal again. I used to be so carefree and loved to be adventurous. Now my mind has me hostage – and this DAMN thyroid. Just wanted to say I feel your pain. ” title=”Sad” />

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