[tinaleonardsamson]

#1060210

I was diagnosed two weeks ago and am looking for advice. What do you wish you knew when you were first diagnosed? Do you feel better wwoth medications or still atruggle with symptoms? It took almost 10 years to get diagnosed and the inital excitement of just knowing what was wrong with me is wearing off and I am scared. Any advice would be greatly appreciated!

[Kimberly]

#1181268

Hello and welcome! Wow, 10 years to get a diagnosis – I can imagine the combination of relief mixed with “NOW what???” The “Treatment Options” thread in the announcements section of the forum is a great place to start researching next steps.

I’ve been on anti-thyroid drugs for 6 years now. We do have other regular members here who have been happy with both RAI and TT. The key is to consult with your doctor, do your research, and understand the risks and benefits before making a final decision. Treatment for hyperthyroidism is definitely not a “one size fits all” program!

In the meantime, building some “down time” into your day to focus on activities that bring you joy and give you energy is helpful. Examples include meditation, gentle yoga, reading, or watching funny movies. Also, anything that you can do to pare down your schedule is helpful during this time. See if there are tasks that are draining your energy that you could potentially “dump” or “delegate”.

Take care!

[barbra]

#1181269

Hi tinaleonardsamson,

Since it seems that the cause of Graves’ disease, what activates it or would prevent it, is not known and there is no cure I really don’t have an answer to the “what do you wish you knew” question.
I had heard some years back that Barbara Bush had it but my first question to my doctor was “what the heck is Graves’?”
Well, after reading the experiences of the helpful people on this forum I know a lot more about the disease and have become involved in my care. I was scared and felt sorry for myself but eventually realized that I have little choice and have to make the best of it.
I was on meds, Methimazole and so on, for about 3 months and then decided on RAI, which I’m glad I did. The endo is still fiddling with the Synthroid dosage and some other meds, up a little, down a little, add this, stop taking that, all according to the blood tests, until we’ll find the ideal dosage.
I still have some symptoms but nothing compared to when it all started.
I really don’t have any advice to give but when I need to understand something or am looking for a little encouragement I come to this forum and I have never been disappointed. Somebody has “been there, done that”!

So, the only thing I can tell you is to familiarize yourself with the disease, become involved in your care and try to stay as positive as you can.
I know it seems like a monumental task but you can do it.

I wish you the best of luck.

Hugs.

Barbra.

[tinaleonardsamson]

#1181270

Thank you so much for sharing your experiences. I’m really grateful for this forum. It does feel overwhelming at times but just knowing what’s wrong and that I’m not losing it helps a lot! Reading so many similar experiences is like validation that my symptoms are real and its not just in my head like drs seemed to think.

[adenure]

#1181271

Hi!

Starting on methimazole or PTU would be the best way to start getting well again. After 6 weeks or so, you can get labs to see where your levels are. Also, get liver function labs to make sure the meds. aren’t upsetting your liver (like mine did). It isn’t a common thing, but it does happen. I didn’t have any symptoms of fever, sore throat or dark urine, but my liver enzymes were 8 times too high all the same. So, I’m glad I asked for the liver labs when I had my thyroid checked. I had to stop taking the methimazole at that point and had surgery 6 weeks later. That was over a year ago. I’m doing pretty well now on Synthroid.

I think the methimazole not working for me was a blessing in a weird way. The surgery went very well, and I’m much better now. I’m on Synthroid 112 mcg. 5 days a week and 100 mcg 2 days a week. I was on 112 all 7 days, but it was too much med. where 100 mcg. wasn’t enough (all 7 days).

Also, whether on methimzole or Synthroid, it takes time to feel better- so try to be patient while your med. dose is adjusted. Waiting 6 weeks for labs is frustrating sometimes, but it will get better.

[Ski]

#1181272

Hi Tina,

Welcome, I’m glad you found us so quickly!

You have great responses here — I just wanted to point out one more thing. Hyperthyroidism can do some serious damage to your body, and the longer you are undiagnosed, the more damage can be caused. Your body has a LOT of healing to do. The thing you need to know is that your body will not truly begin to heal until it has reached (and maintained) a healthy thyroid hormone level. Until then, you will definitely feel better, because you are on a course of treatment that is “quieting the madness,” but only after you get there will your body truly have the resources to heal those areas in your body that have suffered as a result of the hyperthyroidism. So please, be VERY VERY patient with your body during this time. It has not forsaken you. It has been under assault, and it needs time before you’ll feel truly healed. And when I say “maintained” a normal level, I mean a longer period of time than you want to believe, I know. Try to focus your mind on the improvements you see today over yesterday, rather than trying to see all the way to “well.” It’ll keep you pointed in a positive direction and it’ll help you get through this, I promise.

[BBright]

#1181273

Hi Tina ~ I hear and completely understand how frustrating it can be to find a diagnosis and then wonder what’s next! The symptoms of Graves can be intense and discouraging, but hang in there and be patient and kind with yourself. When I was first diagnosed in 2005 I simply took my medication and went into remission after a year, but I never fully understood or knew what the disease was about. I was re-diagnosed in 2012. This time around, I took more responsibility for educating myself on what it was, it’s implications, symptoms, effects, etc. This way, I was able to clearly communicate with my Endocrinologist and know what to expect. Find a doctor who is willing to do the necessary blood work and monitor your thyroid levels. Some of the most important things I needed to learn through this whole process that were crucial to how I dealt with my symptoms and process, were to be kind to myself, rest and sleep enough, get enough nurtition, get suport from others, be patient with myself, and to never give up!!! Give yourself down time, or step away from situations that stress you. I still experience symptoms, but I see this now as journey. One thing that was important for me was to not look back to find a cause, because there could be many that added up, but to continually look forward and be mindful of how I feel in the process. Keep the things that you love and that bring you joy, close to your heart, and lean on that for strength. Know that you are not alone, and that you don’t have go through the process alone. Don’t be discouraged, but hopeful, because now you have a diagnose and you have the tools to move forward in healing.

[tinaleonardsamson]

#1181274

Thanks to each person who responded. All great advice and great to not feel so alone! My endo had me start tapazole right away. along with a betablocker and steroid. I’ve been on the meds for 3 weeks now and ut is rough. Somedays I think the meds are making things worse. butmy blood pressure is stable more often now…and heart rate is less crazy so those are good signs. and I gained a little weight, I’m officially over 100 lbs again, which is great. Some specific questions I have now are:

– my endo wants a 24 hour cortisol test and blood test nect week – 4 weeks after starring meds. does that seem to soon?

– should I ask her to check my liver too? what is that test called?

– I also have Gilberts syndrome – a usually asymptomatic genetic syndrome that affects the liver. anyone else have this too?

[tinaleonardsamson]

#1181275

Thanks to each person who responded. All great advice and great to not feel so alone! My endo had me start tapazole right away. along with a betablocker and steroid. I’ve been on the meds for 3 weeks now and ut is rough. Somedays I think the meds are making things worse. butmy blood pressure is stable more often now…and heart rate is less crazy so those are good signs. and I gained a little weight, I’m officially over 100 lbs again, which is great. Some specific questions I have now are:

– my endo wants a 24 hour cortisol test and blood test nect week – 4 weeks after starring meds. does that seem to soon?

– should I ask her to check my liver too? what is that test called?

– I also have Gilberts syndrome – a usually asymptomatic genetic syndrome that affects the liver. anyone else have this too?

[tinaleonardsamson]

#1181276

and THANK YOU ALL,

[Kimberly]

#1181277

Hello – Yes, re-testing at 4 weeks out is normal for patients on anti-thyroid meds to see if the dose needs to be adjusted. You want to make sure the meds are bringing your levels back into the normal range without sending you hypO.

In terms of liver testing, the medical guidance recommends “a liver profile including bilirubin and transaminases” prior to the start of taking anti-thyroid drugs. Whether or not ongoing liver function testing is needed is controversial; some docs repeat these tests regularly, others do not and instead ask patients to report any possible symptoms of liver issues. (For example, fever, loss of appetite, nausea, vomiting, tiredness, itchiness, dark colored urine, or yellowing of the skin or eyes).

[Author]

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