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#1 July 17, 2012 15:46:40

hockey_coach
Registered: 2012-07-17
Posts: 5
Profile  

Hello and thank you

Hello everyone,

My first post but I have been reading the past week. I wanted to thank the individuals that came up with this site and forum.

I am a 39 year old husband and father of 3 wonderfully children. Almost 3 weeks ago I went for a routine physical (although my first in 4 years). I have been feeling fine however I lost 10 lb 8 or 9 months ago and could not put it back on no matter what or how much I ate. Show up at the doctors the nurse does a ekg the doctor comes in checks my blood pressure and heart rate and immediately sends me to emergency. Test are done and hours later I am told its my thyroid and more tests next 2 days which confirmed a hyperactive thyroid. I was prescribed 2 weeks of a beta blocker and told to see me family doctor before the beta blockers were done. So back to the family doctor at which time I'm told I will be referred to an endo and in the mean time prescribed more beta blockers and TPU. Well the endo himself calls me the next day and say I understand you feeling very sick, to which I reply I have felt fine the entire time even before any of the medication. Endo says to see him the next day (now I'm a little worried after getting in to see a specialist so fast). Go to the endo and he tells me I have Graves, my mother and brother are hypo. My prescription was changed to Tapazole 48 hours after
buying PTU. I have to see the endo every 2 months with blood tests done the week before.

I went from feeling fine to 5 pills a day, put on 4 pounds in 1 week on antithyroid meds (and 3 weeks of metetropol)

What's next I guess no one knows. I wish everyone the best of luck and God bless everyone.

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#2 July 17, 2012 19:51:27

maryrenvall
Registered: 2012-07-16
Posts: 6
Profile  

Hello and thank you

Sounds like you received good medical treatment . The problem is with Hyperthyroid is you can feel really good . I'm sure I was hyper for a long time before I was diagnosed .I went to the DR. for something unrelated and he sent me for tests and bingo . I didnt have racing heart ,fatigue ,tremours etc .Glad you got the help you did , they will likley decrease the amount of drugs you are taking , hopefully you will go into remission . I have heard so many have . Good luck and God bless you too .

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#3 July 18, 2012 09:52:20

Kimberly
Online Facilitator
Registered: 2008-10-14
Posts: 4142
Profile  

Hello and thank you

Hello and welcome to the boards. I was also feeling pretty well when I was diagnosed in a routine. I’d had some symptoms (insomnia, tremors, sweating), but pretty much wrote them off to stress, too much caffeine, etc..

I know it’s frustrating to go from feeling well to being diagnosed with Graves’…but it’s actually a positive to catch the condition early and get started on treatment. We hear from patients who have gone undiagnosed for years…and they can end up in the ER with a thyroid storm and/or heart attack, or their muscles can become so weak that it’s difficult just to do daily activities like climbing a flight of stairs or brushing their hair.

This treatment *will* get you back on the path to good health…even though right now, it probably feels like a step backward.

Please check back and let us know how you are doing!


Kimberly
GDATF Forum Facilitator

…through nature's inflexible grace, I'm learning to live…
– Dream Theater

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#4 Aug. 28, 2012 16:10:30

hockey_coach
Registered: 2012-07-17
Posts: 5
Profile  

Hello and thank you

Update #1

After the first 2 weeks of tapazole I was sure I was losing more hair but it seemed to stop. I had to do my labs at 6.5 weeks and seen the endo yesterday (1 week after my labs) at this point 7.5 weeks I have gained 16 pounds…..dead give away my metabolism had slowed. So my first visit to the endo I was told there were 5 issues T3/T4 metabolic rate, high heart rate and irregular heart beat. So follow up visit T3/T4/metabolic rate And heart rate all are in the normal range, irregular heart beat still exists. So tapazole cut from 10mg twice a day to 15mg once a day, metetropolol not cut still 50mg twice a day. At this loint my thyroid is showing only normal readings. Labs again in 6 weeks with return endo follow up visit #2 in 7 weeks, goal I am told is if t3/t4 stay normal reduce the tapazole again and hopes that the irregular heart beat corrects itself (with luck).

The endo plan was to have a 12-18 month program with hopes to get the thyroid levels corrected and move into remission. To see things in a normal range so quick is truely a blessing. I wanted to share this with everyone because it provides hope.

Edited hockey_coach (Aug. 28, 2012 21:37:52)

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#5 Aug. 28, 2012 16:37:46

snelsen
From: Seattle, Wa.
Registered: 2010-01-01
Posts: 1909
Profile  

Hello and thank you

Welcome! Your experiences will help others, as they travel down this darn road of Graves'. Several men have posted in the past, so I hope some of them see your post. Sounds like you are having good care, and getting good information. Many of us do not go into remission, and I don' t know the evidenced based studies to support this. In part, it is tough to define remission, not sure if there is a definition, stating a number of years off meds. Some people take the meds, gradually taper off them, feel fine, until they don't! The good thing is, you have a diagnosis right away, and have a treatment plan. That keeps you healthy and safe.

I imagine those wonderful children, plus job and life, keep you very busy!
Shirley



TED 2008-present. OD for pressure on optic nerve 02/02/10
Eye muscle surgery 09/23/10 Upper eyelid surgery 02/01/11
Lower eyelids with grafts from palate, 10/5, 10/25/11
Graves dx/thyroidectomy 1959-Synthroid from 1980

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#6 Oct. 26, 2012 19:53:47

hockey_coach
Registered: 2012-07-17
Posts: 5
Profile  

Hello and thank you

Update #2

Had my second follow up October 17. T3/T4 and metabolic rate remained normal on the lower dosage of tapazole. Irregular heart beat is normal now (also had a appointment with a cardiologist begin of October who confirmed this a half month before my endo appointment. I have been weaned off metropolol over 8 days. Tapazole dosage was reduced again with my next follow up is in 11 weeks with the goal of eliminating tapazole in 6 months if results remain normal on reduced dosages (plan is to step the dosage down again in 11 weeks if all remains normal). My Tapazole dosage is now half what it was (20mg down to 10mg) in a 4 month period. I have put on an additional 5lb the past 2 months of muscle with a strenuous home reno lol!

Hopefully others have progressive improvements with their graves and hyperthyroidism. Good luck and God bless everyone.

Edited hockey_coach (Oct. 26, 2012 19:54:26)

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#7 Oct. 27, 2012 03:46:16

Bobbi
Online Facilitator
From: Miami, FL and Zephyr Cove, NV
Registered: 2008-10-27
Posts: 1325
Profile  

Hello and thank you

It's good to hear that you are doing so much better.


[b:3sz1pkbe][color=#008000:3sz1pkbe]Bobbi GDF Online Facilitator[/color:3sz1pkbe][/b:3sz1pkbe]

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#8 Jan. 14, 2020 19:24:30

hockey_coach
Registered: 2012-07-17
Posts: 5
Profile  

Hello and thank you

I should have been updating this thread over the years.

It was this forum that made me aware there is success for some with long term Tapazole usage and the possibility of remission.

I was on Tapazole for almost 6 years started at 30mg and went all the way down to 2.5mg daily and had a jump back to 10mg, 5mg and back down again to 2.5mg. RAI was suggested multiple times by my Endo, he said the likely hood of remission after 2-3yrs of Tapazole was very unlikely.

Right round the 6yr mark my Endo said it was time to stop taking the Tapazole due to my readings going Hypo off the 2.5mg daily dosage.

6 months off Tapazole all readings were normal.

12 months off Tapazole Endo said readings were starting to lean towards hyper again but not enough to consider any treatment. Follow appointment set up in 6 month. I'm told to expect to be Hyper consider RAI option or Tapazole should the readings present this option.

Today 18 months off Tapazole - follow up appointment. All readings perfectly normal. Endo was excited to deliver the news. He said it was very unexpected based on what he seen in the results 6 months prior.

Follow-up set for 6 more months from today. Endo said if all is normal there will be no need to see h again and back to my family Dr. Should this be the case I will ask to see him at least one more time in 6-9 month for one more all clear.

I wanted to share this journey to provide others with more reference points.

This site was a great help to me, if my info can help others that would be awesome.

Thank you for the website, stories and hope this website provides.

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#9 Jan. 15, 2020 08:43:01

Kimberly
Online Facilitator
Registered: 2008-10-14
Posts: 4142
Profile  

Hello and thank you

Wonderful news - thanks for the update!


Kimberly
GDATF Forum Facilitator

…through nature's inflexible grace, I'm learning to live…
– Dream Theater

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#10 yesterday 09:35:14

blindoptimism55
Registered: 2018-06-17
Posts: 5
Profile  

Hello and thank you

thank you for sharing!!! and congrats!

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