# Newly diagnosed with Hyperthyroidism...Symptom??



## beba1432

Hi all...My name is Tiffany and I have been recently diahnosed with Hyperthyroidism. I have most of the symptoms but one is troubling me and I am curious if this is a normal symptom or something else....I feel like I am in a dream..Most people know the feeling as derealization. Its overwhelming and I am freaking out. Its been going on for months. Is this part of Hyperthyroidism? And please say it will go away once my levels get normal lol....


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## chopper

Yup...that's par for the course....feels like you are on drugs or something sometimes when it gets bad. Trippy, isn't it? I hate that feeling too. You're certainly not alone.

Unreal, emotion-less, numb, cloudy, foggy, floaty, out-of-sorts, out-of-bodyish.....very difficult to describe but lots of us know the feeling.


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## beba1432

OMG you just made me the happiest person on earth! I really thought I was crazy!!!! I have cancer on top of all this and my doctors have been telling that I need antidepressants...But I knew it was much more. So after 6 months, I went to my PCP and sure enough its my thyroid! I have had a scan done and am going back on the 31st for a Radioactive Iodine test. In the meantime I am on Metoprolol for the other symptoms. Is that normal? I just hope once I start taking it that my symptoms dont get worse lol...Seeing my BP is normally low like 102 ....I am sooo glad I found this board!!!!!


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## chopper

Im almost positive Metroprolol is a beta blocker which is standard for hyper symptoms - it slows down the heart rate a little and makes you less jittery. I don't believe it should affect your blood pressure but someone else may chime in about that. I've got a script myself for Propranolol - same thing basically. It really doesn't do anything to the thyroid itself - it simply slows the hyper symptoms and fast heart rate.

You said you have cancer, but didn't specify. Is it thyroid cancer? Are you on any other drugs for the cancer?


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## beba1432

nasdaqphil said:


> Im almost positive Metroprolol is a beta blocker which is standard for hyper symptoms - it slows down the heart rate a little and makes you less jittery. I don't believe it should affect your blood pressure but someone else may chime in about that. I've got a script myself for Propranolol - same thing basically. It really doesn't do anything to the thyroid itself - it simply slows the hyper symptoms and fast heart rate.
> 
> You said you have cancer, but didn't specify. Is it thyroid cancer? Are you on any other drugs for the cancer?


Oh sorry..No I have Hodgkins Lymphoma...Just finished chemo and was supposed to do a stem cell transplant but couldnt collect any cells. And now with this going on I would rather wait and fix it before more chemo. Tho I am in remission at this point and no I am not on any drugs other then coumadin. Because I have a blood clot in my liver...Yes I am a mess lol....I am supposed to do more chemo to insure that I stay in remission seeing the transplant could not be done.


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## beba1432

I posted on the general board but after my appt today I figured i would post here because i was told I may have Graves. I am post chemo for Hodgkins and now this....I have been having problems for months,,,,Tired, fatiqued,heat intolerance, light sensitivity, dreamy feeling 24/7, memory problems, weight gain...My biggest issue was the dreamlike feeling ug. Well after months of being told I am just depressed and multiple antidepressants later...I went to my PCP and was told that my Thyroid levels were elevated. I had a ultrasound and it appeared normal. Now I go for a RAI scan on the 31st. Kinda nervous and don't know what to expect. I am on Metoprolol to help with the symptoms in the meantime..But I feel worse on that lol. I was wondering what is to be expected? And what treatments are there for this? I am so out of my elemant lol. I was also told to limit exercise..Is there a reason for that? I really want to lose this weight! More so i am ready to get away from this constant foggy dreamlike feeling! Im just so ready to begin some kind of treatment and I want to feel normal again!

Tiff


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## lavender

Yes, I think the dream like state is completely normal. 
I personally felt high and completely out of touch with reality. I have a history of PTSD and disassociation, and felt exaclty like I did when my PTSD was at is worst, except that I was unable to control the disassociation with the tools I normally use-meditation, grounding practices, therapy, etc. Endo looked at me like I was crazy when I told him this and said it was not thyroid related. My PCP knows me better, told me it was my thyroid and told me I would not feel better until I did something "terminal" to my thyroid (RAI or thyroidectomy surgery). She also told me not to try to work or to make any major decisions. 
It did get a lot better once my levels went back down to normal with anti-thyroid drugs, but I was an emotional basket case until surgery two weeks ago. I am so happy I had surgery because I feel like I have ME back again!
Metropolol is a beta blocker. My PCP put me on it prior to endo putting me on propranolol. It is used to treat high blood pressure, heart racing and palpitations. 
So sorry to hear about your lymphoma. Good luck on your healing journey!


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## Lovlkn

beba1432 said:


> Oh sorry..No I have Hodgkins Lymphoma...Just finished chemo and was supposed to do a stem cell transplant but couldnt collect any cells. And now with this going on I would rather wait and fix it before more chemo. Tho I am in remission at this point and no I am not on any drugs other then coumadin. Because I have a blood clot in my liver...Yes I am a mess lol....I am supposed to do more chemo to insure that I stay in remission seeing the transplant could not be done.


Before you begin any anti thyroid medications be sure they do a liver function test as anti thyroid meds can be hard on the liver.


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## beba1432

lavender said:


> Yes, I think the dream like state is completely normal.
> I personally felt high and completely out of touch with reality. I have a history of PTSD and disassociation, and felt exaclty like I did when my PTSD was at is worst, except that I was unable to control the disassociation with the tools I normally use-meditation, grounding practices, therapy, etc. Endo looked at me like I was crazy when I told him this and said it was not thyroid related. My PCP knows me better, told me it was my thyroid and told me I would not feel better until I did something "terminal" to my thyroid (RAI or thyroidectomy surgery). She also told me not to try to work or to make any major decisions.
> It did get a lot better once my levels went back down to normal with anti-thyroid drugs, but I was an emotional basket case until surgery two weeks ago. I am so happy I had surgery because I feel like I have ME back again!
> Metropolol is a beta blocker. My PCP put me on it prior to endo putting me on propranolol. It is used to treat high blood pressure, heart racing and palpitations.
> So sorry to hear about your lymphoma. Good luck on your healing journey!


Man I do not know how you deal with this derealization! I can't do anything! It has been going on for 5 months with no relief! I can't wait to start my meds and see if this will go away! I want my life back! And I may have to go through more chemo and I refuse to do anything until I am back in my right mind!!! So you say you had your thyroid removed...Is that common? I am so glad that you are doing much better cause seeing that gives me hope that this will go away.


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## mommyjewel

I was recently diagnosed with graves disease. I am still learning about it myself.

The Thyroid uptake scan was not bad at all. I had to go early in the morning and swollow the pill and then I came back in the afternoon and laid on a table and they took pictures of my thyroid. Generally it takes about 30 minutes.

Here is a youtube video of the equipment:




I was placed on Atenolol to slow down my heart rate (my heart rate was in the 120s) and then I was placed on Tapazole to decrease my thyroid hormone.

I wish you all the best
:hugs:


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## Debbie from Milwaukee

Tiff:
Welcome to the board, but so sorry this is the way you had to find us! I know it would help people here if you post your thyroid levels as well as the ranges for each of the tests. The most important thyroid tests to watch for are the TSI, the free T3, and the free T4. Thyroid disorders also commonly deplete some important nutrients such as magnesium, ferritin (a protein that carries iron in the body), and B12. It might be a good idea to ask for testing of these nutrients.

Folks here will also advise you to be tested for antibodies for Grave's (a TSI test) as well as for Hashimoto's (TPOab and TGab). Some people have both disorders (Grave's is the result of your own antibodies overstimulating the thyroid, and Hashi's is the result of your antibodies creating inflamation in the thyroid that destroys it. It also is possible to have Hashimoto's and have periods of being hyper (too much thyroid) as well as hypo (too little thyroid), since the destruction of the gland can produce both extremes at various times.

You mention that you are post-chemo for Hodgkins. I have read of people on this board discuss a variety of physical events (surgeries, stopping smoking, immunizations, etc.) that seem to "jump start" autoimmune thyroid flare-ups. I believe my own daughter's Grave's disease really accelerated following an adenoid surgery when she was 16.

Hope you are able to receive a clear-cut diagnosis at the end of the month. Being prescribed a beta blocker for your symptoms of a racing heart is a good thing, and this is also why the doc advised you NOT to exercise for now. I have heard that even healthy young people can risk a heart attack if they exercise with a hyrperthyroid condition. I can tell you are anxious to begin treatment, but the thyroid is VERY tricky--it pays to make sure you have a correct diagnosis first. Please return here to let us know how it is going!


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## chopper

Debbie is correct. Many times "all hell breaks loose" after major stressors and I would think cancer and chemo would qualify.

I am hesitant to reply due to my lack of knowledge about the interactions between chemo, cancer and graves. They very well could be related but Im afraid this is going to be well above my experiences here and I don't want to give you bad advice.

My main suggestion would be for your cancer and thyroid doctors to work closely together to get you sorted out. I wish I could give better advice but I really don't want to steer you in the wrong direction.

I can tell you that they are limiting your exercise because when you are hyper your heart doesn't beat perfectly well and it usually beats fast normally. They don't want you giving yourself a heart attack or stroke or something by further increasing your heart rate by working out - it just puts extra strain on a heart that is already "working out" on its own.


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## Andros

beba1432 said:


> I posted on the general board but after my appt today I figured i would post here because i was told I may have Graves. I am post chemo for Hodgkins and now this....I have been having problems for months,,,,Tired, fatiqued,heat intolerance, light sensitivity, dreamy feeling 24/7, memory problems, weight gain...My biggest issue was the dreamlike feeling ug. Well after months of being told I am just depressed and multiple antidepressants later...I went to my PCP and was told that my Thyroid levels were elevated. I had a ultrasound and it appeared normal. Now I go for a RAI scan on the 31st. Kinda nervous and don't know what to expect. I am on Metoprolol to help with the symptoms in the meantime..But I feel worse on that lol. I was wondering what is to be expected? And what treatments are there for this? I am so out of my elemant lol. I was also told to limit exercise..Is there a reason for that? I really want to lose this weight! More so i am ready to get away from this constant foggy dreamlike feeling! Im just so ready to begin some kind of treatment and I want to feel normal again!
> 
> Tiff


Hi there, Tiff!! I am sorry to hear of all your health challenges right now. Do they have the Hodgkins on the run? Do you think it is possible that the chemo for that has skewed the thyroid?

I am glad that you are getting an uptake scan; this is very good news.

Regarding the Metroprolol; I think you should tell your doctor you don't feel good on this medicine. That does not sound right to me.

What labs were high for the thyroid; would you know?

Have they done any antibodies' tests such as the ones listed below?

TSI (thyroid stimulating immunoglobulin),TPO (antimicrosomal antibodies) TBII (thyrotropin-binding inhibitory immunoglobulin), Thyroglobulin Ab, ANA (antinuclear antibodies), (thyroid hormone panel) TSH, Free T3, Free T4.

You can look this stuff up here and more.........
http://www.labtestsonline.org/understanding/conditions/thyroid.html

What form of Hodgkin's did you have? You sure are having a battle but I want you to know that we are here for you and hopefully not only can we help you but we can put a smile in your heart also.

Exercise is definitely not the thing to do right now except maybe for some "regular" walking at a normal pace. Maybe a bit of swimming or easy yoga. Nothing to stress the heart.
We have some great folks here.


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## chopper

I merged your two posts into this one post here so people can focus on your whole story.


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## beba1432

Hey all! Well I don't have my numbers..But I will ask for them the next time I go. As far as I know only a TSH and Free T4 and T3 has been done. I have also had a ultrasound and it showed normal. Next is the scan. My PCP is the one doing it because my Oncologist didn't believe me that there was anything wrong. (I do not like my Oncologist, but have no choice due to insurance) My cancer right now is in remission, but I was supposed to have a Stem Cell Transplant to keep me there. Unfortunatly my marrow was so fried they couldnt. So the next step is low grade chemo for the next few months. But I don't want to do anything until I have my thyroid under control. I feel horrible and as each day passes it seems to get worse. I have Hodgkins Lymphoma and I am sure the chemo had reasoning for this. I just want to feel better soon...I can handle nausea all day long lol but this foggy head and dreamlike feeling gets to me.....Thanks so much for the info and I am happy that I found this group! I am at a loss with knowing about Thyroid stuff! LOL


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## lavender

It sounds like you have a difficult journey ahead. 
I was told that thyroids are slow to respond to treatment, and it took about 5 months from initial diagnosis until I had my surgery and really felt like I had myself back again. I was really anxious to feel better and have all the answers at once, but had to do my best to relax and let my diagnosis evolve as testing and treatment took time. 
I personally decided to start seeing a therapist I had a lot of history with who I trusted to deal with me in my really fragile state. She treated me through the worst of my PTSD, so I knew that she was capable of working with me while I was completely out of my mind with disassociation (what you call de-realization) from my thyroid. It took special approval through my insurance, but it was well worth it. 
I have some good friends who I was able to reach out to and be honest with about my psychological state, and that really helped me let go of what was out of my control. I have been out of work on disability since May, and I did not drive through the worst of my symptoms. It was crucial for me to have people around who would pick me up to take me to the store, the doctor, out to support group meetings, church, or just for a meal and socialization. Since I live alone, I tried to schedule something every day to get out of my house to avoid the isolation. Sometimes I just went somewhere with friends, sat and fell asleep, but it still helped. I have to admit that I have a really awesome support system. 
When I was at home, I spent a lot of time researching/obsessing over my condition on-line. This really helped me to know and understand my options for treatment. My docs were usually good at giving me lab results, so I could confirm what they were telling me with my own research. 
One thing I might suggest is that you try to get a referral to an endocrinologist-a doctor who specializes in hormone-related disorders/treatment, hopefully someone who has an understanding of cancer and how that relates to your thyroid issues. Honestly, you have a lot more on your plate than I suspect most thyroid patients do. My PCP is great, but she was not equipped to treat my thyroid issues. I often piggybacked an appointment with my endo with a trip to the PCP because while the Endo had a better understanding of how to treat/diagnose my thyroid condition, my PCP know me and my history better, and as a 32 year old with a history of PTSD and fibromyalgia who typically takes a longer time to heal than the general population, my PCP had a better understanding of the whole picture of me and what was normal in my body than the Endo, who was more used to typical thyroid patients.
I saw it as having a team of medical providers, and I was at the head of the team ultimately making the decisions that were best for My Body.


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## beba1432

Hi lavender, 
I can't imagine what you have gone through as well. Yes I am just ready to be able to spend time with my kids and feel as if i am me again. I see that most people with Hyperthyrroidism have had their thyroid removed. Is that common? I am just so happy to finally have a diagnosis I can't wait to begin treatment and see if it works. Man that sucks it took so long for you to feel better. I know that with the dissociation alone its HORRIBLE! And then to have the Thyroid problems which also can cause those feelings....It takes over your life! I am going crazy waiting for my scan. You are so forunate to have great people and doctors around you. I had to fight with mine in order to get a proper diagnosis. This has completely taken over my life. I don't like to go outside because the light bothers my eyes and things just look wierd. There is so much to be learned about this condition. I am wondering if it is best to just have it removed?


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## beba1432

Andros said:


> Hi there, Tiff!! I am sorry to hear of all your health challenges right now. Do they have the Hodgkins on the run? Do you think it is possible that the chemo for that has skewed the thyroid?
> 
> I am glad that you are getting an uptake scan; this is very good news.
> 
> Regarding the Metroprolol; I think you should tell your doctor you don't feel good on this medicine. That does not sound right to me.
> 
> What labs were high for the thyroid; would you know?
> 
> Have they done any antibodies' tests such as the ones listed below?
> 
> TSI (thyroid stimulating immunoglobulin),TPO (antimicrosomal antibodies) TBII (thyrotropin-binding inhibitory immunoglobulin), Thyroglobulin Ab, ANA (antinuclear antibodies), (thyroid hormone panel) TSH, Free T3, Free T4.
> 
> You can look this stuff up here and more.........
> http://www.labtestsonline.org/understanding/conditions/thyroid.html
> 
> What form of Hodgkin's did you have? You sure are having a battle but I want you to know that we are here for you and hopefully not only can we help you but we can put a smile in your heart also.
> 
> Exercise is definitely not the thing to do right now except maybe for some "regular" walking at a normal pace. Maybe a bit of swimming or easy yoga. Nothing to stress the heart.
> We have some great folks here.


Thanks for the info. Now i can undertsand why I am gaining soooo much weight... and why i am hungry all the time. I will be happy to finally get to do some light exercise.


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## Debbie from Milwaukee

Tiff:
I just wanted to add another thought or two. I think people responding here to your post have richly illustrated what the world of thyroid problems is all about: it is partly a matter of getting correct information/treatment both from a knowledgable endo or highly equipped internist as well as educating yourself on the many facets of your disorder, AND it is partly needful to surround yourself with supportive health care providers, family, and friends.

Unfortunately, it is NOT unusual that you had to fight with your doc to get proper diagnosis. I have heard of many people on this and other forums going YEARS and suffering life-threatening complications before they were properly treated. My now 20 year old daughter went about 6 months before her Grave's diagnosis and about 1 year after RAI until she achieved a balanced thyroid (which was considered pretty speedy). She has endured additional physical and psychological trials more recently, some of which are thyroid-related.

Above all, people who find thyroid relief learn how to firmly advocate for themselves. I hope that you get many of your questions answered and find good support to take you through your road ahead!

- Debbie


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## Debbie from Milwaukee

lavender said:


> I personally decided to start seeing a therapist I had a lot of history with who I trusted to deal with me in my really fragile state. She treated me through the worst of my PTSD, so I knew that she was capable of working with me while I was completely out of my mind with disassociation (what you call de-realization) from my thyroid. It took special approval through my insurance, but it was well worth it.
> I have some good friends who I was able to reach out to and be honest with about my psychological state, and that really helped me let go of what was out of my control. I have been out of work on disability since May, and I did not drive through the worst of my symptoms. It was crucial for me to have people around who would pick me up to take me to the store, the doctor, out to support group meetings, church, or just for a meal and socialization.


Lavender, I just wanted to salute you for sharing so much of your journey with your Grave's disease and PTSD. If you care to look up my daughter's story, you can find it in the Grave's disease section.

My daughter is at the place in her illnesses that I need to help her apply for Medicaid disability. It is the only way she will be able to get medical coverage for her physical and emotional illnesses and not slip through the cracks. She is a wonderful, warm, loving human being, but I believe the effects of her Grave's (and likely Hashimoto's) together with complications from her female hormones contributes a lot to throwing her all out of whack.

I hope your schooling to become a therapist goes well. I worked as a school counselor for 15 years before I was laid off, and I found it to be a very rewarding career.


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## beba1432

Hi Debbie,

Thanks so much. Its just crazy to me of all the possibilities that can be going on with Thyroid problems. I wish more doctors would test for this! I think the worst part of all this is the psycological part. The memory fog too....ugggg. I just wish we could get a quicker response to treatment. This is serious and has so many comlications. I am going to begin the process and find a good Endo. I love my PCP but I don't think he has taking this serious enough. I am desperate for relief. Desperate to be able to spend time with my kids again and be able to drive! I have been reading everyones stories and I see the struggles but I have also seen the relief...So it gives me a little hope that I will bounce back. Sooner then later hopefully lol!


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## lavender

I wanted to respond to your questions about surgery since I think you have asked about it a couple times. 
I am not sure how much you have been reading outside this board about thyroid issues. I read a lot. I was in crazy hyper mode, much as you are now, and did not keep track of much, but here is one site that really helped. 
http://www.suite101.com/lesson.cfm/19330/2904/7
Basically, I googled hyperthyroidism and Graves Disease (my current diagnosis which took the docs a few months to settle on-even though everyone told me I appeared to by a classic Graves patient, they would not confirm diagnosis without all the tests) and read from there. I avoided sites that were trying to sell me something, read medical sites and was a lurker on several support group sites to get the scoop from others who had actual experience. I also avoided posters who were trying to tell me what to do or highlight the worst case scenario. (the reason why I am posting on this particular forum now is that I found it to be more positive and supportive than several others) I needed as much positive thinking as I could get!
So, there are typically 3 treatment options for hyperthyroidism:
1.anti-thyroid drugs to bring thyroid levels down + beta blockers to control symptoms. Some people go into remission after trying this option alone for a period of time. Others are on it for a time until they make a decision about one of the other two options. I was on meds for about three months waiting for surgery. I was on super high doses due to the severity of my disease by the time the docs recognized it and treated me. I never felt well, despite the fact that my thyroid levels had come down. I have a really sensitive system, and felt that my body would never feel well ingesting the amount of drugs I needed on a daily basis to keep my levels in check. I had little hope for remission based on the already mentioned severity of my illness, and my docs agreed.
2. Radioactive Iodine. Non-surgical option that destroys the thyroid. I can't say much about this as it was not for me. Doctors tend to prefer it because it does not involve surgery which is always risks with surgery, but there is a different set of risks that everyone has to weigh for them self. You may want to pop over to the RAI page on this forum.
3.Surgery to remove part or all of the thyroid. I needed to have my whole thyroid out, and I had to be assertive with doctors to receive this option as it is not their first choice. But, I knew at a cellular level that this was what my body wanted. The more I read, the more it became clear to me. My thyroid almost killed me and was taking over my body. I needed it out to heal. I am really glad I chose this option as there was instant relief of my hyper symptoms the moment I woke up from surgery. I think the fact that this was my choice has made me more tolerant of the complications I am dealing with-low calcium levels and loss of my singing voice (hopefully temporary as I love to sing!) There are a few people on the Hyperthyroid page who have posted their recent experiences with surgery. 
I want to say that I am not a doctor. I can speak to my experience, my choices, and the reasons for them, but I can not tell you what is best for you. I do not live in your body, know your diagnosis, or understand the complications cancer poses with your treatment. Even once you talk with doctors who are knowledgeable about your situation and recommend a particular treatment, it is still YOUR CHOICE what option you choose. *YOUR BODY=YOUR CHOICE. You have to live in it, no one else does.* All the options have their ups and downs, and you will have to weigh what is best for you.


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## beba1432

lavender said:


> I wanted to respond to your questions about surgery since I think you have asked about it a couple times.
> I am not sure how much you have been reading outside this board about thyroid issues. I read a lot. I was in crazy hyper mode, much as you are now, and did not keep track of much, but here is one site that really helped.
> http://www.suite101.com/lesson.cfm/19330/2904/7
> Basically, I googled hyperthyroidism and Graves Disease (my current diagnosis which took the docs a few months to settle on-even though everyone told me I appeared to by a classic Graves patient, they would not confirm diagnosis without all the tests) and read from there. I avoided sites that were trying to sell me something, read medical sites and was a lurker on several support group sites to get the scoop from others who had actual experience. I also avoided posters who were trying to tell me what to do or highlight the worst case scenario. (the reason why I am posting on this particular forum now is that I found it to be more positive and supportive than several others) I needed as much positive thinking as I could get!
> So, there are typically 3 treatment options for hyperthyroidism:
> 1.anti-thyroid drugs to bring thyroid levels down + beta blockers to control symptoms. Some people go into remission after trying this option alone for a period of time. Others are on it for a time until they make a decision about one of the other two options. I was on meds for about three months waiting for surgery. I was on super high doses due to the severity of my disease by the time the docs recognized it and treated me. I never felt well, despite the fact that my thyroid levels had come down. I have a really sensitive system, and felt that my body would never feel well ingesting the amount of drugs I needed on a daily basis to keep my levels in check. I had little hope for remission based on the already mentioned severity of my illness, and my docs agreed.
> 2. Radioactive Iodine. Non-surgical option that destroys the thyroid. I can't say much about this as it was not for me. Doctors tend to prefer it because it does not involve surgery which is always risks with surgery, but there is a different set of risks that everyone has to weigh for them self. You may want to pop over to the RAI page on this forum.
> 3.Surgery to remove part or all of the thyroid. I needed to have my whole thyroid out, and I had to be assertive with doctors to receive this option as it is not their first choice. But, I knew at a cellular level that this was what my body wanted. The more I read, the more it became clear to me. My thyroid almost killed me and was taking over my body. I needed it out to heal. I am really glad I chose this option as there was instant relief of my hyper symptoms the moment I woke up from surgery. I think the fact that this was my choice has made me more tolerant of the complications I am dealing with-low calcium levels and loss of my singing voice (hopefully temporary as I love to sing!) There are a few people on the Hyperthyroid page who have posted their recent experiences with surgery.
> I want to say that I am not a doctor. I can speak to my experience, my choices, and the reasons for them, but I can not tell you what is best for you. I do not live in your body, know your diagnosis, or understand the complications cancer poses with your treatment. Even once you talk with doctors who are knowledgeable about your situation and recommend a particular treatment, it is still YOUR CHOICE what option you choose. *YOUR BODY=YOUR CHOICE. You have to live in it, no one else does.* All the options have their ups and downs, and you will have to weigh what is best for you.


Thank you so much for this! I am so glad that you found what works for you. I have seen that for most people it is a struggle. For me I am up for anything! I want to feel better so bad that I will try it all lol! It sucks I have to wait until the 31st for the test. But I am glad that they are tyring to get the right diagnosis. Everything appears to come with a risk, but like you said it is all about finding what works for you. I am not sure the route my doc is going to want to take. I am assuming it will be meds at first. So how are you feeling now after your surgery?


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## lavender

Of course you are anxious for all the tests and treatment to happen right now, part of being hyper is anxiety! I can remember wanting to feel better right away, and having to let go because that was just not a reality for me. It is important to wait for the right diagnosis, and to find out whatever you can in the meantime so that you are able to make an informed decision when the time comes.
I feel great since my surgery, thanks for asking. I went back to my singing group today, and was surprised that I actually had a voice! It's still a little rough, but this is the first time I have been able to get a note out since my surgery! Some of the other members commented that I looked better than they have ever seen me! I just have so much energy now, and I feel better than I have in years! Surgery was rough, but I am just so glad that my thyroid can't mess with me anymore!


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## beba1432

I am so glad you are feeling normal again. I am sure your singing voice will come back better then ever. I am sure this helps with the dissociation as well. I am hoping I will respond to the medication, if not I will opt for the surgery, because this has effected me long enough and my kids are suffering because i don't do anything anymore. I go tomorrow for a follow up. I feel like each day I am getting worse with a whole new symptom. I have terrible dissociation and on top of it My vision is odd. Its clear but colors appear dull, it almost feels like I can't see or I am losing vision. But when I am outside is horribly bright and I can't see well either. The hardest part is not knowing what is related to the thyroid and what isnt. I can;t even look at myself in the mirror because it does not seem real. Does all this go away with treatment? I hate to ask so many questions, I have tried to go back through previous posts and see if this has happened to anyone else but I havent found any. Which makes me feel like I am losing it lol. The doctors are pretty much convinced I have too. Thats why I am sooooo happy I have found this board. No one knows but those who have been there. :hugs:


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## beba1432

I was also going to ask if the treatment for Graves is the same as Hyperthyroidism? I seem to be getting that opion. If so, I was going to see if my doc can start me on something tomorrow.


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## lavender

Good luck with your doctor appointment tomorrow. 
I had a lot of trouble with my vision when I was hyper. I couldn't see straight. I couldn't read because I just couldn't focus. Lights seemed really bright, I couldn't stand to be outside without really dark sunglasses because it felt like the sun was burning my eyes. I even work sunglasses in doors until I switched my bulbs to dimmer ones. I didn't drive for a long time. TV and computer were too bright. 
I had to wear a dark mask to sleep because my eyelids felt about as thick as rice paper, and the sun through the curtains woke me up. My eyes were extremely dry and itchy. I didn't wear my contacts for a few weeks when I was at my worst. OTC Eye drops helped. 
And yes, my vision got better with treatment. That was one thing the anti-thyroid drug helped with. I have not had any trouble with my eyes since surgery. One of the reasons I did not want radioactive iodine treatment was because it poses a risk of triggering/worsening eye disease. I did not want to make my eyes any worse. My thought was that if they found thyroid cancer, I would have the radioactive iodine in a second, but that otherwise, I would do everything I could to avoid it otherwise. 
Hyperthyroidism causes a lot of symptoms, I was personally surprised at how much my body just shut down, and I felt really awful! My endo looked at me like I was crazy when I told him about the disassociation, then documented it as part of my PTSD! I tried to explain to him that this was different, but he just didn't get it, and said it was not thyroid related. There was a lot he kept telling me was not thyroid related, but I would look it up and find it somewhere. Every time I read a list of hyperthyroid symptoms and found some new symptom, It would just fall into place. I swear I was having symptoms for years before my doctor confirmed it was my thyroid! Thankfully, my PCP knows me pretty well, and every time the endo sent me back to her, she reassured me that it WAS my thyroid, and would get better with treatment. 
I just saw that your iodine uptake and scan is next week (Rest assured that although they will be giving you radioactive iodine for the test, it is a much smaller dose than what they would be giving to actually kill your thyroid. I did not have any negative side effects from mine). 
You can't take anti-thyroid drugs before the scan because they will skew the results, but you may want to ask if your doc they can put you on something after the scan. Methimazole and PTU are anti-thyroid drugs that bring down thyroid levels, and that will help with some of the symptoms. They do bring down the immune system, so I do not know how that affects cancer treatment. It may be worth asking about.
My endo wanted to confirm Graves with the blood work and scan before scheduling treatment. He did schedule my appointment with the surgeon, but made sure it was long enough after the scan to have results. 
Hang in there, at least you know that this is your thyroid now, and you are getting tested. Treatment will take some time, but there is life after hyperthyroid.


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## Andros

beba1432 said:


> I was also going to ask if the treatment for Graves is the same as Hyperthyroidism? I seem to be getting that opion. If so, I was going to see if my doc can start me on something tomorrow.


It is w/ the exception that you also need to be seeing a Board Certified Ophthalmologist who has experience treating Graves' Eye Disease.


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## lavender

Andros said:


> It is w/ the exception that you also need to be seeing a Board Certified Ophthalmologist who has experience treating Graves' Eye Disease.


Andros, do you feel this is true if eye symptoms have improved? When I told my endo about my concern for my eyes, he just blew them off because I have no obvious bulging. My PCP just said to wait until after thyroid was under control to follow up and get OTC eye drops for the dryness. This was one of the reasons I refused RAI, and my eyes do seem a lot better since methimazole/surgery. I am going to see my usual optometrist for new glasses next week, but was not sure if I needed to look further to have someone evaluate me for GED.
I am really not sure how to find someone who treats GED if my docs refuse to admit I even have a problem. To top it all off, my current insurance expires at the end of the month, and then I will be dealing with a new student health plan. I have been trying to schedule everything I can now, probably too late to fit in an ophthalmology appt. I'm not sure if student plan will cover this or not.
My eyes were seriously bad when I went into toxic storm. My hope was that thyroidectomy would help prevent future problems, but I know this is not a guarantee.


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## beba1432

Hey guys....So I am more confused then ever...I am at my breaking point. My T3 and T4 are normal! My TSH is 0.0....WTH?????? My doc does not even know what is going on. So on top of my Thyroid Scan he scheduled an MRI. What could this mean??? Please help...:sad0049: I want to just run and hide!


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## beba1432

MRI has been done....And I have the RAI scan on the 31st. Has anyone had experience with normal t3 and t4 but tsh at 0?


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## lavender

I am confused. Your first post said that you were diagnosed with hyperthyroidism, and now your T3 and T4 are normal. Did you have lab work that said they were high initially and more recent lab work that says they are normal? Or were they normal with 0 TSH the whole time? I am just trying to get a clearer picture. I am not great with lab work, but if you have copies of the lab results, and post them with the dates they were done, someone may be able to help you interpret.

Has your doctor done any antibody testing? That would help identify if there is an auto-immune issue, and help identify the reason for your funky lab results. Sometimes thyroid levels can fluctuate. Antibody testing along with everything else will help you get an accurate diagnosis.

Also, are you seeing an endocrinologist or a primary care doc? An endocrinologist specializes in treating hormone disorders and may have a better understanding of the particulars if your doc is confused and unable to help you get to the bottom of this. Your symptoms plus O TSH indicate that something is wrong. With a history of cancer, I would not fool around.

I am glad that your doc is having you follow up for additional testing. 
4 years ago, I had a doctor tell me that my TSH was low, but that all other lab work looked normal. She said something about sub-clinical hyperthyroidism, but really did not seem to believe there was anything to treat or follow up with at that time. Then her practice mysteriously closed. She did make a point of telling me to have someone monitor my thyroid, but never forwarded the lab work when I did get a new doc. By the time my new doc checked my labs they were fine, and she saw no reason to follow up. I insisted she check my thyroid this spring before I got so sick. Turns out I was hyper, and so sick I had to be hospitalized less than a month later. I suspect that I had undiagnosed thyroid issues all that time, and that more thorough follow up initially could have prevented the eventual crisis.

Bottom line, I am glad your doc is following up, but if he does not have a lot of experience with thyroid issues, I would suggest asking for a referral to someone who does.

:hugs:


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## beba1432

I was told that I had Hyperthyroidism and Graves. I know at that point a t4 and tsh was done. Well after repeat tests everything was normal except the TSH which was 0. So he ordered an MRI to see if my glad was working right. MRI was fine. Before he said it was Hyper. Now he is changing his mind until we get the thyroid scan done next week. I am so freaked out cause I have all the symptoms..Heart palps, fatigue, foggy head, weight gain. I don't remember the excact numbers just the TSH. But they were all in normal range. I dont go back until Sept. 7th. But by then the scan will be done and hopefully I will get answers and MEDS lol! The 0 tsh just really confuses me when the others are normal. I am only going to my PCP cause where I am we dont have an Endo. So far I feel my PCP is doing good with the tests. But I will see what if says after the scan and if I don't agree I will find an Endo and make an appt. Cause I feel horrible and if my thyroid is the cause...I want it fixed! LOL I have read about the Sub Clinical and how most docs dont want to treat it. But if I am symptomatic....Why not?


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## Andros

beba1432 said:


> Hey guys....So I am more confused then ever...I am at my breaking point. My T3 and T4 are normal! My TSH is 0.0....WTH?????? My doc does not even know what is going on. So on top of my Thyroid Scan he scheduled an MRI. What could this mean??? Please help...:sad0049: I want to just run and hide!


Has your doc run any antibodies' tests? This is essential. Your thyroid labs can come in normal range but yet Autoimmune Thyroid Disease is rampant and making you very sick.

Here are the labs I suggest and by the way, the T3 and T4 are the cheapest tests and include bound and unbound hormone so you just don't know how much unbound hormone is available for cellular uptake. You need FREE T4 and FREE T3.

TSI (thyroid stimulating immunoglobulin),TPO (antimicrosomal antibodies) TBII (thyrotropin-binding inhibitory immunoglobulin), Thyroglobulin Ab, ANA (antinuclear antibodies), (thyroid hormone panel) TSH, Free T3, Free T4.

You can look this stuff up here and more.........
http://www.labtestsonline.org/understanding/conditions/thyroid.html

Your doctor should also order a radioactive uptake scan to check for solid nodules which could indicate cancer.

Your TSH is undetectable. That means something is very very wrong. If this guy is fluffing you off, find a better doctor.


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## MrGraves

thats what happened to me, my levels came back "normal" well frankly that doesnt mean anything if they dont do a battery of other tests and Ive learned that my parathyroid is growing. This dream state for me is always charged and rampid, I cant concentrate on anything and I want to fight or am just unpleasent to be around. So Ill pray and it helps. They say the mind is the most powerful gland... I beg to differ... I think the thyroid and parathyroid are almost as much in control as the brain. The dream state is what I got caught up in fighting off and not understanding how to be able to tell when it is coming up. For me, its more like a storm, and god bless my poor wife... sometimes her ears bear the brunt of the storm. It IS like a violent dream state. At times this lends itself as a creative tool if you can slow your mind down enough to stay on task. 
God Bless.


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## beba1432

Andros said:


> Has your doc run any antibodies' tests? This is essential. Your thyroid labs can come in normal range but yet Autoimmune Thyroid Disease is rampant and making you very sick.
> 
> Here are the labs I suggest and by the way, the T3 and T4 are the cheapest tests and include bound and unbound hormone so you just don't know how much unbound hormone is available for cellular uptake. You need FREE T4 and FREE T3.
> 
> TSI (thyroid stimulating immunoglobulin),TPO (antimicrosomal antibodies) TBII (thyrotropin-binding inhibitory immunoglobulin), Thyroglobulin Ab, ANA (antinuclear antibodies), (thyroid hormone panel) TSH, Free T3, Free T4.
> 
> You can look this stuff up here and more.........
> http://www.labtestsonline.org/understanding/conditions/thyroid.html
> 
> Your doctor should also order a radioactive uptake scan to check for solid nodules which could indicate cancer.
> 
> Your TSH is undetectable. That means something is very very wrong. If this guy is fluffing you off, find a better doctor.


Hey Andros....He hasnt ran any other tests. He is waiting for the results of the RAI scan. I am hoping it will reveal something.He said it could also show Graves..Is that correct? I have been filling my brain with all kinds of info lol. But I am unclear of all the things the scan will show besides cancer. I have made a follow up appt for later the 1st of next week to get the results and discuss running other tests. If after the scan he does not follow up with more blood work, I am going to another doc. So far he is the only one who has lishyroid listened to me, but I think he is just used to the typical thyroid tests. For some reason I am just lucky enough to have something none of my docs have ever dealt with lol! I always have to be the odd ball! I go tomorrow for the 1st day of RAI scan....I am sooo ready lol! Wish me luck!


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## beba1432

MrGraves said:


> thats what happened to me, my levels came back "normal" well frankly that doesnt mean anything if they dont do a battery of other tests and Ive learned that my parathyroid is growing. This dream state for me is always charged and rampid, I cant concentrate on anything and I want to fight or am just unpleasent to be around. So Ill pray and it helps. They say the mind is the most powerful gland... I beg to differ... I think the thyroid and parathyroid are almost as much in control as the brain. The dream state is what I got caught up in fighting off and not understanding how to be able to tell when it is coming up. For me, its more like a storm, and god bless my poor wife... sometimes her ears bear the brunt of the storm. It IS like a violent dream state. At times this lends itself as a creative tool if you can slow your mind down enough to stay on task.
> God Bless.


WOW thats crazy! How have you been dealing with it? Have you thought about removing your thyroid?


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## Andros

lavender said:


> Andros, do you feel this is true if eye symptoms have improved? When I told my endo about my concern for my eyes, he just blew them off because I have no obvious bulging. My PCP just said to wait until after thyroid was under control to follow up and get OTC eye drops for the dryness. This was one of the reasons I refused RAI, and my eyes do seem a lot better since methimazole/surgery. I am going to see my usual optometrist for new glasses next week, but was not sure if I needed to look further to have someone evaluate me for GED.
> I am really not sure how to find someone who treats GED if my docs refuse to admit I even have a problem. To top it all off, my current insurance expires at the end of the month, and then I will be dealing with a new student health plan. I have been trying to schedule everything I can now, probably too late to fit in an ophthalmology appt. I'm not sure if student plan will cover this or not.
> My eyes were seriously bad when I went into toxic storm. My hope was that thyroidectomy would help prevent future problems, but I know this is not a guarantee.


The antibodies that infiltrate the eyes are different from the antibodies that attack the thryoid gland so it is my humble opinion that you should see an Ophthalmologist.

Treating the thryoid does not treat the eyes. http://jcem.endojournals.org/cgi/content/abstract/jc.2009-2470v1

And while this is pediatric, it certainly applies to adults as well.....
http://www.aosonline.org/xactions/2007/1545-6110_v105_p146.pdf


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## lavender

Thanks Andros. I think I will need to follow up with an ophthalmologist. 
I saw my optometrist for my annual vision appointment last week, and that was really interesting. She told me my eyes are really dry and red. the vision exam was really difficult due due issues I was having with the lights, and I realized that I am still really sensitive to light because the normal lights in her office were just too bright to me. I think I haven't noticed because I dimmed all the lights in my apartment when things got really bad and just never changed them back!
Well, the worst part was when she dilated my eyes. Usually, don't have any trouble with this, but this time was different. I became so sensitive to light that even the really dim lights in her office were too much. I had a really hard time driving home despite putting the dark shades from the doc behind my regular sun glasses. When I got home, I shut off all the lights, closed my heavy curtains to block out all light, and laid down for a nap because I just could not cope with me sensitivity to light and inability to see. I slept for about 4 hours before waking up and realizing that my eyes had improved enough for me to be able to tolerate dim lighting!
Any suggestions for finding on ophthalmologist who is good at treating Graves Eye disease? I really don't want to have to rely on my endo for a referral as he blew off my eye symptoms when I brought them up before.


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## beba1432

How do they test for Graves Eye Disease?


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## lavender

beba1432 said:


> Hey Andros....He hasnt ran any other tests. He is waiting for the results of the RAI scan. I am hoping it will reveal something.He said it could also show Graves..Is that correct? I have been filling my brain with all kinds of info lol. But I am unclear of all the things the scan will show besides cancer. I have made a follow up appt for later the 1st of next week to get the results and discuss running other tests. If after the scan he does not follow up with more blood work, I am going to another doc. So far he is the only one who has lishyroid listened to me, but I think he is just used to the typical thyroid tests. For some reason I am just lucky enough to have something none of my docs have ever dealt with lol! I always have to be the odd ball! I go tomorrow for the 1st day of RAI scan....I am sooo ready lol! Wish me luck!


How did your RAI Scan Go?


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## beba1432

It went good. I go Tuesday to get the results...Boy I hope they find something because this dreamlike feeling is getting worse by the day :-(


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## Andros

beba1432 said:


> It went good. I go Tuesday to get the results...Boy I hope they find something because this dreamlike feeling is getting worse by the day :-(


Please let us know as soon as you are able. Worried for you.


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## beba1432

Ok...It is time to find a specialist. My PCP said that my that my RAI scan showed high uptake but in normal range. He said I really shouldnt be showing symptoms...BUT I AM! He dont want to do anything but have me come back in a month and he took me off the metoprolol. ARG! From everything I read...It is possibly Hyper or Graves! So I am on the lookout for a specialist!


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## lavender

I'm sorry to hear your doctor was so unhelpful. How frustrating! Especially if you are not feeling well. You definitely have a lot of symptoms. It sounds like it's time for a endocrinologist to order the right bloodwork and to help you get to the bottom of this.

I think PCPs just don't know enough about thyroid issues to properly treat/diagnose them. My doc told me last week that hyperthyroidism is really rare and that she has only seen one other patient have a similar experience to mine in 30 years of practice! I
I think with proper care, you will be on a road to recovery.

Have you stopped the Metropolol? How are your heart palpitations?


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## bjm2363

beba1432 said:


> Ok...It is time to find a specialist. My PCP said that my that my RAI scan showed high uptake but in normal range. He said I really shouldnt be showing symptoms...BUT I AM! He dont want to do anything but have me come back in a month and he took me off the metoprolol. ARG! From everything I read...It is possibly Hyper or Graves! So I am on the lookout for a specialist!


I'm sorry to hear you are having trouble. I think we have similar labs (normal FTEs and .10 TSH) I had a low uptake, but hyperactivity showed in the scan I have similar symptoms too, except the dreamlike state. I was on Metoprolol first then went to Propanalol ER. From what I read, the metoprolol was safer and I didn't like how I felt on the Propanalol so my Endo switched me to Metoprolol long acting. I am so reactive to meds now that I take half a pill a day of the smallest dose (25 mg.) So far so good  I just got back from getting lab work for antibody testing --4 vials! He said he was checking for Graves or Hashi's. I really think you should get the antibody testing to figure out what's going on. Best of luck to you :hugs:


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## beba1432

hey guys...well I just got back form the endo and all my lab work came back fine. :-( So I dont know what is going on....I am still in this dreamy state and still majorly fatigued....I am at my end here. I just want to give up.


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## Andros

beba1432 said:


> Ok...It is time to find a specialist. My PCP said that my that my RAI scan showed high uptake but in normal range. He said I really shouldnt be showing symptoms...BUT I AM! He dont want to do anything but have me come back in a month and he took me off the metoprolol. ARG! From everything I read...It is possibly Hyper or Graves! So I am on the lookout for a specialist!


Yes; you must find a better doctor. Good grief. High uptake is very suspect and what about the radiologist report? Do you have it?

The uptake rate is not all there is to it; there is much more. Please get a copy of the radiologist's findings and comments.

Then post here.

Suggested tests........

TSI (thyroid stimulating immunoglobulin),TPO (antimicrosomal antibodies) TBII (thyrotropin-binding inhibitory immunoglobulin), Thyroglobulin Ab, ANA (antinuclear antibodies), (thyroid hormone panel) TSH, Free T3, Free T4.

You can look this stuff up here and more.........
http://www.labtestsonline.org/unders...s/thyroid.html


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## lavender

Oh how frustrating. Don't give up on yourself and don't let the doctors either. It sounds like it's time for a new doctor who is willing to take you seriously.


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## beba1432

Hey guys...Long time no talk. I just wanted to update you. I have been to several docs and finally one found my problem. My FSh levels are high..Close to be menopausal. Soo....I am hoping this is it.


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## lavender

Good to hear from you, and glad you found a doc to help you out. Do you feel satisfied with this answer? How is your dream like state?


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## Andros

beba1432 said:


> Hey guys...Long time no talk. I just wanted to update you. I have been to several docs and finally one found my problem. My FSh levels are high..Close to be menopausal. Soo....I am hoping this is it.


Well, I sure hope so also and it is mighty good to hear from you. When you have time, we want "details!" Inquiring minds always want to know.


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## viva

beba1432 said:


> OMG you just made me the happiest person on earth! I really thought I was crazy!!!! I have cancer on top of all this and my doctors have been telling that I need antidepressants...But I knew it was much more. So after 6 months, I went to my PCP and sure enough its my thyroid! I have had a scan done and am going back on the 31st for a Radioactive Iodine test. In the meantime I am on Metoprolol for the other symptoms. Is that normal? I just hope once I start taking it that my symptoms dont get worse lol...Seeing my BP is normally low like 102 ....I am sooo glad I found this board!!!!!


GOD! well guess what?? It happened the same to me! I just got my TT done did you get it?


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## viva

lavender said:


> Good to hear from you, and glad you found a doc to help you out. Do you feel satisfied with this answer? How is your dream like state?


Yes! I had the same!! It was horrible! and besides that I had a behavioral change and it affected me in every way. Eat healthy, exercise, follow doctors instructions and I hope you feel better!


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## AZgirl

also faily new to the board, i very much felt that high! I called it the Graves Coma! Sometimes i wanted to cry, but couldnt quite do it~~~ weird. Once i started my meth. meds, it finally went away. along with the heart meds. FYI, i was alergic to meds, but i desided to cut in half, and added a benedry. My body finally adjusted to meds, now without benedryl. and slowly increasing mgs. I have learned that back in the day, they would put people in the mental hopital for graves for the "coma" and symptoms! Although while going thru it, you do believe that out of body experiance is a mental mind?! I am just thankful, i can get off the couch and be almost back to normal. I sure do appricate life more. Does anyone here ever get real BAD joint pain? wrists and fingers? for days? i thought i broke them before,t hen it just all goes away?!~ if no one does, then maybe i do belong in a mental hospital


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## Andros

viva said:


> GOD! well guess what?? It happened the same to me! I just got my TT done did you get it?


Welcome to the board! When did you have your TT? How are you feeling now and are you on thyroxine replacement yet?


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## Andros

AZgirl said:


> also faily new to the board, i very much felt that high! I called it the Graves Coma! Sometimes i wanted to cry, but couldnt quite do it~~~ weird. Once i started my meth. meds, it finally went away. along with the heart meds. FYI, i was alergic to meds, but i desided to cut in half, and added a benedry. My body finally adjusted to meds, now without benedryl. and slowly increasing mgs. I have learned that back in the day, they would put people in the mental hopital for graves for the "coma" and symptoms! Although while going thru it, you do believe that out of body experiance is a mental mind?! I am just thankful, i can get off the couch and be almost back to normal. I sure do appricate life more. Does anyone here ever get real BAD joint pain? wrists and fingers? for days? i thought i broke them before,t hen it just all goes away?!~ if no one does, then maybe i do belong in a mental hospital


I couldn't walk; thought my feet were crushed and more! Are you going to have your thyroid removed or are you going to stay on the antithyroid med for a while?


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## AZgirl

Andros, as of now i am going to continue to stay ONLY on meds. I am very anti RAI or surgery if i havent tried all other possibilities. Mainly because i doc was very "pressure-ing" me to do RAI. Didnt want to listen to me, without telling me im doing the wrong thing! So therefore, rest assure, i will do whatever i have to do now to prove her wrong. (sorry, but she really mad me mad). Did your feet pain go away, fairly soon after?


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## Andros

AZgirl said:


> Andros, as of now i am going to continue to stay ONLY on meds. I am very anti RAI or surgery if i havent tried all other possibilities. Mainly because i doc was very "pressure-ing" me to do RAI. Didnt want to listen to me, without telling me im doing the wrong thing! So therefore, rest assure, i will do whatever i have to do now to prove her wrong. (sorry, but she really mad me mad). Did your feet pain go away, fairly soon after?


Oh, indeed. When I started on the thyroxine replacement after RAI. You bettcha'!

Hey, you know what? First you have to satisfy yourself. I felt the same way. Then after a while I was getting sicker and sicker in spite of the antithyroid med and decided to have that sucker zapped.

In retrospect, I do wish I was offered the option of surgery for I will never know if I had cancer or not. As it turned out, I had to have RAI 3 times. I was in very very advanced stage of Grave's that is why. And they have to be careful w/ the RAI; they can only give you so much at one time.

You won't know until you try. We support your decision no matter what it may be with one exception. There is no natural cure for hyper/Graves' and it can be life-threatening so on principle, I personally cannot support that.

Doctors have a tendency to make my blood pressure go sky high. That seems to be the order of business lately; to make the patient very mad, very uncomfortable. Sad, but true.


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## AZgirl

when you say you got sicker and sicker with meds, im not sure if you felt that way, or blood tests show that??? I havnt had any bloodwork yet, since starting my meds. After i changed my dosage, I feel almost normal. I have all my activity back to normal. As if nothing has changed. I dont hardly have heart palps. or not tremors. But i do have a question for anyone to answer, I have Prop. for heart. Since i am not showing any more symptoms due to being on meds for thyroid, is it necessary to continue heart ones? I havnt taken in a few weeks, and feel great! but, i know it dont help with graves, but does it help any with blood labs t3s and t4s? My doc doesnt speak clear english, so i just cant seem to get a straight answer. does anyone know of this?


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## lavender

AZgirl said:


> also faily new to the board, i very much felt that high! I called it the Graves Coma! Sometimes i wanted to cry, but couldnt quite do it~~~ weird. Once i started my meth. meds, it finally went away. along with the heart meds. FYI, i was alergic to meds, but i desided to cut in half, and added a benedry. My body finally adjusted to meds, now without benedryl. and slowly increasing mgs. I have learned that back in the day, they would put people in the mental hopital for graves for the "coma" and symptoms! Although while going thru it, you do believe that out of body experiance is a mental mind?! I am just thankful, i can get off the couch and be almost back to normal. I sure do appricate life more. Does anyone here ever get real BAD joint pain? wrists and fingers? for days? i thought i broke them before,t hen it just all goes away?!~ if no one does, then maybe i do belong in a mental hospital


I actually read where they would put people on thorazine, which is an old psychiatric drug that basically sedated people, and sometimes had permanent side effects. People in the mental health world talk about the "thorazine shuffle" because of how it affected people. I am so glad I didn't have to go through that! When I was hospitalized in my hyper storm, they put me in a hospital room with a window that opened up. (which was really nice because I was so hot and sweaty). I just kept telling people, "I must not be crazy if they put me in a room with a window." LOL.


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## lavender

AZgirl said:


> when you say you got sicker and sicker with meds, im not sure if you felt that way, or blood tests show that??? I havnt had any bloodwork yet, since starting my meds. After i changed my dosage, I feel almost normal. I have all my activity back to normal. As if nothing has changed. I dont hardly have heart palps. or not tremors. But i do have a question for anyone to answer, I have Prop. for heart. Since i am not showing any more symptoms due to being on meds for thyroid, is it necessary to continue heart ones? I havnt taken in a few weeks, and feel great! but, i know it dont help with graves, but does it help any with blood labs t3s and t4s? My doc doesnt speak clear english, so i just cant seem to get a straight answer. does anyone know of this?


Glad to hear you are feeling better on the meds. I never did and decided to have surgery, but I have heard that some people do well on the meds and can even go into remission. My endo told me I could stop taking the meds for my heart or even reduce them as long as my heart rate was stable (which it never was for me). I would at least want to run it by the doc before just stopping anything though.

Bloodwork to monitor your thyroid levels is TSH, Free T3 and Free T4. T3 and T4 will tell you how much thyroid hormone you have. When you are hyper, they are high. Once those are back to normal, you may start to feel better.

TSH works the opposite to T3 and T4. TSH is thyroid stimulating hormone. It responds to your T3 and T4 to tell your thyroid to work harder or not. So, when your T3 and T4 are high, your TSH should be low, signaling your thyroid to slow down. (Which it doesn't when you have Graves because your immune system is attacking it and making it work extra well regardless). When your T3 and T4 are low, your TSH rises to tell your thyroid to work harder (this would be hypothyroid).

Bloodwork to monitor the antibodies that are attacking your thyroid in Graves disease is TSI. TPO, TBII, and Thyroglobulin antibodies may also be high with Graves. I hope this helps and I hope you continue to do well on the meds! You never know, you may be headed for a remission!


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