# Lucky me



## jnott5 (Oct 9, 2012)

Hi.... recently diagnosed with Graves Disease (Aug 25th) and found this site and so thankful for all the people who share their stories, advice , fears....good to know I am not alone... Went to primary for heart palpitations (52 year old active male) and they took blood...called few days later with diagnosis and script to see Endo...on beta blockers etc.. went to Endo who discussed the options and decided to start on 10 mg/day of Methimazole. Also had the RAIU which showed 56% after 24 hours and a normal ultrasound. I have been on the Methamazole three weeks when I got a sore throat this Sunday into Monday (yesterday) and feared the worse...ended up getting blood work that was normal so I am ok to continue with treatment... Just came here to ramble a bit and get things off my chest. It is more difficult to have your family understand some of the things that I am going through. My primary told my wife that when he first saw the results that I must have been feeling really horrible and just not letting on. However, other than the heart palpitations I felt great. Since then I have had some rough days/moments... sometimes it feels like my body is racing inside.. sleep issues..weight loss (12 pounds in two weeks). This is a very bizarre disease in terms of the different ways I can feel at different times. I play a lot of competive golf and I played a 27 hole (big money) tournament three days after starting my medicine. I don't know how I even played with the tremors I had and how sick I felt. I am more mad than anyhting right now. Thanks for listening.

TSH .01 (.4 - 4.5)
T4 Free 3.1 (.8 - 1.8)


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## webster2 (May 19, 2011)

Welcome! You have found the correct community for suppport and help. It is a very bizarre disease, and those that don't have it, don't quite understand even if they try! My poor husband went through the mill with me. All good now!

I wish you all the best. Did the endo suggest a treatment plan? Hang in there, it does get better!


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## jnott5 (Oct 9, 2012)

Yes...my Endo has me on 10mg a day. I go back in January with new blood work. Hopefully can start leveling off my hyper. Also satying on the beta blocker for now. Does help with the racing heart. Thanks


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## Lovlkn (Dec 20, 2009)

jnott5 said:


> Yes...my Endo has me on 10mg a day. I go back in January with new blood work. Hopefully can start leveling off my hyper. Also satying on the beta blocker for now. Does help with the racing heart. Thanks


Start looking for a new doctor. You need to be tested every 4 weeks until your levels are normal and stable.

You will likely need dose reductions along the way.

You need to insist that they run FT-4 and FT-3 on you every time and ONLY dose from those. Your TSH is not a reliable test and mainly diagnostic although most doctors do use it to dose from.

Some people never stabilize - I never did and after 4.5 years of monthly lab's I gave up and had my thyroid removed. Knowing what I know today I would have given it 18 months and then had it removed.

I'm no doctor - I've lived it and speak only from experience.


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## webster2 (May 19, 2011)

Oh yeah, January is too long to wait, and too many things could change between now & then.


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## Andros (Aug 26, 2009)

jnott5 said:


> Hi.... recently diagnosed with Graves Disease (Aug 25th) and found this site and so thankful for all the people who share their stories, advice , fears....good to know I am not alone... Went to primary for heart palpitations (52 year old active male) and they took blood...called few days later with diagnosis and script to see Endo...on beta blockers etc.. went to Endo who discussed the options and decided to start on 10 mg/day of Methimazole. Also had the RAIU which showed 56% after 24 hours and a normal ultrasound. I have been on the Methamazole three weeks when I got a sore throat this Sunday into Monday (yesterday) and feared the worse...ended up getting blood work that was normal so I am ok to continue with treatment... Just came here to ramble a bit and get things off my chest. It is more difficult to have your family understand some of the things that I am going through. My primary told my wife that when he first saw the results that I must have been feeling really horrible and just not letting on. However, other than the heart palpitations I felt great. Since then I have had some rough days/moments... sometimes it feels like my body is racing inside.. sleep issues..weight loss (12 pounds in two weeks). This is a very bizarre disease in terms of the different ways I can feel at different times. I play a lot of competive golf and I played a 27 hole (big money) tournament three days after starting my medicine. I don't know how I even played with the tremors I had and how sick I felt. I am more mad than anyhting right now. Thanks for listening.
> 
> TSH .01 (.4 - 4.5)
> T4 Free 3.1 (.8 - 1.8)












Total bummer from one Grave's person to another. I am going to be straight up w/you.

Since you are a professional golfer, it is my experienced opinion that you may benefit greatly from just getting on w/life by getting rid of your thyroid.

I have not heard a single poster on this board and we have many, who have any regrets.

If I could make choices over again, I would have never ever fooled around w/anti-thyroid meds. They made me sick but just in a different way. Sick is sick; ya' know?

We have quite a few men here. I hope they see your post.


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## diva_alicia (Jun 18, 2012)

Howdy and welcome to another Graves person. 

I too was recently diagnosed and am taking beta blockers and anti-thyroid medication. However, even my endo surgeon yesterday said such a course of action is really considered a temporary means of symptom management due to the side effects of the meds. Usually this is intended to give you time to be a little less "crazy" and think more in depth about which course of permanent action you want to take - radioactive iodine ablation (RAI) or surgery to remove your thyroid. It takes the meds a little while to affect change, but no where near as long as your doctor is giving you. Getting a correct dose of anti-thyroid meds usually takes blood work every 4-6 weeks with dose tweaking based on the results. While I commend you on finding this support group and feeling comfy to vent to them, may I also say they are a tremendous source of info. Being new it can seem like strangers who don't know you are telling you how wrong everything is that you are being told by doctors, but I'm now a believer. LOL I have had good and bad endocrinologists and without this forum, I wouldn't have known the difference and would have been shoved into a course of treatment that wasn't putting me and my well-being at the center. Finding a good endocrinologist who acknowledges there is more to this disease than numbers is tough. Finding one who is willing to work with you, your family, how you feel, extensive blood work (not just your TSH levels but free T4 and/or free T3), and who will really teach you about your options is imperative. This is a serious disease that overtime can damage your heart, liver, and sanity! I wish it were as simple as an extra check up each year, but my disease went unknown and undiagnosed for a year and a half, during which I became a different person. This is not a simple disease. Not a simple treatment. Not a simple cure. Please embrace educating yourself, this group, and finding the right physician for you and your family. Mine is over 95 miles from my home - but no one local could hold a candle to her. It took three months to get an appointment with her, and now I know why. I don't want to sound like a pooper, but I think you have been given some poor advise by a doctor who is either more of a diabetes endocrinologist, whose workload is too heavy, or who is unclear about the implications of this growing disease. Were you referred to an ophthalmologist to see if you have eye involvement? Were you told of the issues the disease causes if left untreated? Were you explained the treatment options? Were your lab results shared with you? I wish you the best in this journey - and boy it is a journey. Just realize you have a tremendous resource here, not just a sounding board.


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## ideborah (Sep 19, 2012)

I just want to echo what others have said. I am also newly diagnosed and just started on methmizole. My endo wanted to see me in 3 weeks and only the Columbus holiday has pushed it to 4 weeks. Most endos spend most of their time on diabetes, so it is going to take some time to find an endocrinologist you trust who has revelant hyperthyroid experience. Please for the sake of your health, find one. This is not a one size fits all disease, so it really does have to be monitored.

Good luck, I hope you feel even better soon.


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## jnott5 (Oct 9, 2012)

Thanks for all the responses...just to be clear...I am not a professional golfer (though that wouldn't be bad )... I am a very good amateur and I happen to play competetive golf and worry what next year will hold.. regarding my Endo... he was "ok" when I visited him...he did explain the three options to me; thought if I were in my shoes would try ATDs. I kind of remember it was a blur, I did ask a lot of questions. We did talk about my eyes but never any recommendation for a specialist. Like I said previously he wants me back in Jan. Now that I see what others have posted that seems to be the biggest issue...I should be back sooner... He did give me a script for the following blood work for Jan: T-3, Total; T-4, Free; TSH; PTH, Intact&Cal.; Comp. Metaboliv Panel; and Vit D 250H LC/MS/MS ... So my two issues are need to be back sooner and see an eye specialist. I will be working on an earlier appointment and referral from this doctor or investiage a new Endo. As alwayus thanks for reading.


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## Andros (Aug 26, 2009)

jnott5 said:


> Thanks for all the responses...just to be clear...I am not a professional golfer (though that wouldn't be bad )... I am a very good amateur and I happen to play competetive golf and worry what next year will hold.. regarding my Endo... he was "ok" when I visited him...he did explain the three options to me; thought if I were in my shoes would try ATDs. I kind of remember it was a blur, I did ask a lot of questions. We did talk about my eyes but never any recommendation for a specialist. Like I said previously he wants me back in Jan. Now that I see what others have posted that seems to be the biggest issue...I should be back sooner... He did give me a script for the following blood work for Jan: T-3, Total; T-4, Free; TSH; PTH, Intact&Cal.; Comp. Metaboliv Panel; and Vit D 250H LC/MS/MS ... So my two issues are need to be back sooner and see an eye specialist. I will be working on an earlier appointment and referral from this doctor or investiage a new Endo. As alwayus thanks for reading.


Oh, yes..............................this guy is just leaving you to your own devices for too long of a period.

A Board Certified Ophthalmologist would be a good move on your part. Much can be done to stave this off and you need a "baseline" anyway so the ophthalmolgist can detect movement/changes.

You might be interested in this about the vitamin D.
Vitamin D
http://www.eurekalert.org/pub_releases/2009-04/arf-vdm040809.php


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## webster2 (May 19, 2011)

were the three options ATD's, RAI or surgery? It is good to get in a baseline visit with an opthamologist. You do need to be seen before January, maybe 4 weeks to see how the methimazole is working.

It is really tough to find an endo that deals with a lot of Graves patients. Most see a lot of diabetics.

BTW, when you see the doctor again, don't tell him you got your info from the internet..say your support goup! Some doctors really take offense with people learning things on the internet.


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## jnott5 (Oct 9, 2012)

Lucky me back... and now with another question.... I survived Hurricane Sandy and only lost power for 7 hours (hope and pray for all others impacted)...However, have not had phone, internet or cable for three days running now and that led to my currrent situation..On Tuesday, home from work, had power but none of the above I decided to continue with my home improvement activities and suffered a bad injury with a table saw.. Cut the tip of my thumb off at a 45 degree angle...right across the nail.. been to ER twice and see a hand specialist tomorrow... My question... does the Graves disease effect the healing process? Any input will be greatly appreciated.


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## Andros (Aug 26, 2009)

jnott5 said:


> Lucky me back... and now with another question.... I survived Hurricane Sandy and only lost power for 7 hours (hope and pray for all others impacted)...However, have not had phone, internet or cable for three days running now and that led to my currrent situation..On Tuesday, home from work, had power but none of the above I decided to continue with my home improvement activities and suffered a bad injury with a table saw.. Cut the tip of my thumb off at a 45 degree angle...right across the nail.. been to ER twice and see a hand specialist tomorrow... My question... does the Graves disease effect the healing process? Any input will be greatly appreciated.


Oh, my dear Lord!!! I am so so sorry! Yes; it impacts the healing process. It would be a good idea to take some things that are "supportive" of your immune system. You don't want to trigger it for triggering it also triggers the bad antibodies.

Things that I have found to be safe are Omega III and here is a link to some recommended vitamins that should be safe for you BUT.............you do need to discuss this w/your doctor.

Again, I am horribly sorry about your thumb and please let us know how you are doing.

Best thing you can really do is eat a very healthy diet. Bottom line. Lots of fresh veggies, raw or cooked, lean meat etc..

You survived the storm but not the saw blade. Lots of irony there.


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