Graves Disease

[MELINE]

My doctor has the blood tests and told me I have graves disease (hyperthyroid). Anyone alse with that thing??? I would like to know if when I start the medication my hair will grow back normal....

Thanx

Meline

[Guest hightop girl]

I was diagnosed with Grave's Disease about 20 years ago. It had already been in remission at least once, so I took the meds to slow/stop my thyroid, then used radioactive iodine to "dissolve" it. My hair did get thinner until my thyroid was back at a normal level, then it stopped falling out. It wasn't quick. I have been on synthroid since, but had a year or so when I took Armour instead. I had trouble regulating the armour, so I am back on synthroid.

[MELINE]

ok...so the symptoms are reversable I guess.... and it depends on how good you react to the medicine.thanks for the info!

Meline

[ShayFL]

I have nothing to add Meline, except, I hope you feel better soon.

[MELINE]

thank you so much...

[Nancym]

I had Graves disease about 20 years ago. I got nudged into RAI (radioactive iodine) to kill the thyroid. I wish I hadn't. There's a good chance you could go into spontaneous remission, especially if you're staying gluten free (or so I have read).

Funny, when I had Graves I got hirsute (grew more hair). Usually it is hypothyroid that makes you lose the hair. But I also gained weight with Graves, which is back-asswards.

It was a miserable disease to have... I was so fidgety, temperamental, I itched like crazy, I couldn't sleep, my heart raced and pounded, my hands shook. Eating soup was hard. The spoon shook so much. My doctor thought I was strung out on cocaine when he first saw me for it. I came in for something else and he took my pulse and asked me if I was taking cocaine. Turns out he actually had a patient he saw earlier in the week had the same thing going on. He was quite pleased with himself for diagnosing me.

Well, hopefully the treatment nowadays is better than it was back then! Avoid RAI if at all possible. Having your own thyroid is 100% better than not having one.

[ShayFL]

I have heard MANY horror stories with RAI. As I know people heal from this disease. Stay positive.

[MELINE]

......I didn't know that this disease can be healed....my doctor is very positive but never told me that it will one day go away.I am a very positive person but right now I am feeling a little bit confused. I don't know why I have to collect autoimmune diseases and I really don't want to add anyone more in my cv.....celiac seems so easy comparing to Graves. I feel like I was born with less abilities to resist to diseases than other people. When I was 13 I had a serious fatal disease that left me with a heart problem, then celiac and now graves, and I am only 30 years old....too much venting, I know, I just wish it stops hear. I don't want any more health issues.

Any way. all that info about RAI I'll keep it in mind, I thought it was ok to do it but no thanks I don't wanna cause more problems to my system.

Maybe I can work this out only with medicine and by staying positive.

Meline

[ShayFL]

You could also eat all of the foods that block thyroid: Broccoli, cabbage, cauliflower, brussel sprouts, millet. Eat the veggies raw to block the most thryoid hormone.

[MELINE]

You could also eat all of the foods that block thyroid: Broccoli, cabbage, cauliflower, brussel sprouts, millet. Eat the veggies raw to block the most thryoid hormone.

I promise my self I will eat HUGE amounts of all these things!!!!!! thanx...

[mamaw]

to my knowledge you can not reverse thyroid disease. It can be active or dormate at times throughout your life but it never goes away.

The Rai therapy is something I fought for a couple of years. After going & being in ICU because of Afib brought on by my thyroid (went into a thyroid storm & almost died. )I was told many never come out of a thy. storm. I was lucky.

I ended up having no choice in the matter it was life or death so I did the Rai. I hated doing that but again I had no choiced left. I have symptoms of both hper & hypo. After a year I'm still not controlled ..... New autoimmune disorders are piling up.

All I can say is do not leave your thyroid untreated or this can or may happen to you. The true version of my story is VERY long.

I still hate the Rai therapy but it saved my life only to bring on more problems. But I'm still alive so I guess that counts.

This little butterfly shaped thyroid rules your total body..... be knid to it & please do what you have to do to stay alive.

mamaw

[MELINE]

glad you are alive and hope you will soon feel great mamaw .......I will keep that info too in mind. I don't want to ignore my thyroid. I have an appointment with my doc tomorrow and he will gie me the treatment and I am ready to ask him about 1.000 questions.....He seems to be VERY informed and I am really lucky I found him. I visited him last week just because my period came earlier, he asked me some questions and immediately sent me to have some blood tests (tsh, t3,t4) cause he was sure I had graves. .....finally a good doctor (at least he seems like a good one...)

thank you mamaw.

Meline

[Nancym]

to my knowledge you can not reverse thyroid disease. It can be active or dormate at times throughout your life but it never goes away.

Stick "graves disease remission" in google and see. There's a lot of stuff out there about it, even from medical journals. But if you can get the symptoms under control with meds and diet you might not ever get to the point where you need to consider anything else.

RAI is definitely something to consider if you go into a thyroid storm or perhaps have the eye disease. I just wish I had had the opportunity to use other therapies first and I didn't know anything at all about the connection to gluten sensitivity.

[MELINE]

Do you have any problems with your eyes???? this is the most terrifying thing......

I 've read about the remission thing and I think it is something like the disease is "sleeping".....Please let me know about the eyes. It is really freaking me out.

[Guest hightop girl]

I am the long time Grave's disease girl here... RAI is not usually the first course, but often is the inevitable choice in the end. The drugs to suppress your thyroid are also quite dangerous, so you really need to trust your doctor. As I said, my Grave's had gone into one spontaneous remission (it is like it is just sleeping, but usually wakes up again) so the likelihood of a second remission was not good. If you look at multiple autoimmune syndrom, Grave's is one of the diseases. In the end, that is what I have. Celiac came along after... just really the chicken and the egg scenario. I think the celiac is much harder to deal with.

If you have a doctor you trust, you will handle it just fine. It takes time to get the thyroid adjusted, and you will need at least yearly checks even after it seems to be at the right level. In the first year, I went from hyper (pretreatment), to hypo (during the thyroid suppression) then gradually to normal. I have had to adjust my synthroid with weight gain, weight loss, pregnancy and other body stressers. If left untreated, and not in remission, Grave's can damage your heart and other organs, so it is really important to work with your doctor and not just try to control it with diet.

[MELINE]

I think the celiac is much harder to deal with.

?????really??? that is encouraging. I always thought that celiac is the most funny thing that happened to me. I am not beeing ironic. I mean it. I was such a relief to finally get rid of all that pain just by excluding gluten.

I'll keep in mind what you said about the medicines. I think I can trust my doctor. I will not try to deal with it alone / with diet. But I' ll try to support my efforts with the right diet. Please do tell me some good news about the eye thing...it is so scaring...

Meline

[purple]

I was looking thru my natural doc book to see if it said anything about eyes or things not posted. Here is what I found. It says one symptom is protruding eyeballs. Thats all about eyes. To avoid dairy products for at least 3 months. Avoid stimulants: coffee, tea, nicotine and soft drinks. Be wary of treatment with radioactive sodium iodine (iodine 131 or I-131)which is often recommended for this condition. Severe side effects with it. Do not rush into surgery, try to improve your diet first. If a goiter affects breathing or swallowing, surgery may be needed to remove part or all of the thyroid. www.tsh.org is a web for names and addresses of organizations that can provide additional information about thyroid disorders.

Supplement list:

multivitamin mineral complex

Vit B complex (Injections may be needed)

brewers yeast

essential fatty acids

lecithin granules

Vit C with bioflavanoids(esp important in this stressful condition)

Vit E

foods to add to the other list posted from ShayFL: peaches, pears, rutabagas, soybeans, spinach and turnips

[Rachel--24]

About thyroid eye disease (TED)....RAI can trigger this or worsen it. I did have severe eye symptoms and my Endo. would measure my eyeballs (with some type of instrument) at each visit. I had a CT scan to look at the muscles and there was only mild inflammation...nothing severe and my eyes never did buldge (even though there was such intense pressure I felt like they would totally pop out of the sockets! ).

The symptoms did subside. I now realize alot of the eye symptoms were caused by other issues but the Graves really made it more severe....and especially follwing RAI. There was a period that the eye pain was totally unbearable. It was the worst pain I've ever experienced in my life. I've had alot of problems but no other pain has come close to what was going on with my eyes.

I'm in agreement that thyroid disease can be resolved.....theres plenty of evidence that this one can go into remission and stay in remission.

If I could do it all over again.....knowing what I know now....I would have never accepted RAI as a "treatment" for Graves. I wasnt in a life or death situation and I deeply regret having done RAI...it may just be one of the biggest regrets of my life.

Anyways...cant change it now. It was not my first course of treatment. I took PTU for a few years. Actually I only took it for short periods of time over those 3 years. The Graves was triggered during times of heavy stress and if things didnt settle down on their own I would take PTU for a few days and then I'd be ok. I went over 1 year without needing any meds.

The Dr.'s tried to push me into RAI right from the start but without even researching it I felt it was the wrong thing to do. A few years later when I got really sick and developed all of these symptoms I had thought it was all related to the Graves because I wasnt aware of any other health problems. PTU was not working to resolve symptoms and the Dr.'s told me my only choice was RAI.

I never got better because the reason I was having all of those symptoms wasnt entirely caused by my thyroid. The RAI actually worsened my health problems because I think it placed extra stress on my immune system at a time when it was already struggling with other things....on top of the Graves.

The RAI just about pushed me into a thyroid storm and I had to take PTU because my levels were going more and more hyper before the effects of the RAI took place. It took weeks before I started going hypo. I was given a very high dose of RAI for someone my size but I dont think that it actually fully ablated my thyroid. I am only needing a small dose of Armour compared to most who have had their thyroid ablated.

Theres alot of evidence to support the theory that leaky gut allows antigens to enter the system which ultimately leads to autoimmune disease. I now have severe leaky gut issues but more than likely this problem was developing long before I started feeling its effects. I feel that if not for the leaky gut allowing foreign invaders (including undigested food protein, toxins, fungi, bacteria, etc) into the system theres a good chance I would have never developed the Graves Disease.

There is a strong belief that in healing the gut you can prevent autoimmune disease from occuring...as well as possibly putting some (like Graves) into remission. There is also a strong belief that as long as the gut remains leaky...those who are genetically susceptible can develop several autoimmune conditions. As long as the immune system has to deal with these incoming antigens....there is always that possibility that in the process of fighting these things off autoimmune conditions can be triggered.

[ShayFL]

When I had post pardum thyroiditis my eyes did seem larger and they hurt. I went to the eye doctor and everything checked out o.k. Once my thyroid went from hyper to hypo the eye symptoms went away.

Try not to worry about what "might" happen and focus on what is happening "right now". Believe you will be well and believe in your body's ability to heal. Please do not listen to anyone who says thyroid disease is incurable (doctors and people in here).

I was told I had something that could be cured by only surgery 7 years ago. It healed on it's own (I did some natural therapy) and I get a clean scan every year for 7 years.

I believe my thyroid can heal. But I have deliberately chosen to suppress my thyroid right now (with medication) because it gets rid of symptoms and I have too much on my plate to deal with healing it right now. And the symptoms were so bad that it would have interfered with the other healing I going through. It is a conscious choice. But I believe my thyroid can heal itself.

[purple]

When I had post pardum thyroiditis my eyes did seem larger and they hurt. I went to the eye doctor and everything checked out o.k. Once my thyroid went from hyper to hypo the eye symptoms went away.

Try not to worry about what "might" happen and focus on what is happening "right now". Believe you will be well and believe in your body's ability to heal. Please do not listen to anyone who says thyroid disease is incurable (doctors and people in here).

I was told I had something that could be cured by only surgery 7 years ago. It healed on it's own (I did some natural therapy) and I get a clean scan every year for 7 years.

I believe my thyroid can heal. But I have deliberately chosen to suppress my thyroid right now (with medication) because it gets rid of symptoms and I have too much on my plate to deal with healing it right now. And the symptoms were so bad that it would have interfered with the other healing I going through. It is a conscious choice. But I believe my thyroid can heal itself.

Correct...our bodies are designed to heal themselves, given the proper nutrients they need

[mamaw]

I tried several things before the Rai. I was on cytomel for about nine months & it was the best I have ever felt in my whole life. Everything that gave me problems were righted. Then all of a sudden things went haywire again.Then my big thyroid problems started to rear its ugly head!.

I truly had no choice. It has been a year in May but today I'm still not regulated & I work with my doctor but he is against anything but synthyroid... It is just not working for me. My hair is falling out. I go from hot to cold in 10 seconds. I have headaches, mood swings , gaining weight & fatigued. And now I was dx'd with dysthyroid orbitopathy. This is scary.I'm up to about six autoimmune disorders at present.

I feel like I'm on a roller coaster & can't get off.

I too, was one where at first the thyroid started to die off so I was treated then it kicked in & started to function on its own again so off meds. I did this several times before the heart problems surfaced...

I was in & out of ICU at least three times because of Afib & thyroid storm......

I even tried to get a doctor to cut my throat & remove my thyroid so I didn't have to do Rai ...I was that against RAI.

I just want to tell everyone please seek treatment & don't play with a faulty thyroid to long. My process lasted about four years. More like a nightmare....

blessings

mamaw

[Nancym]

I know you had to go the RAI course but your post-RAI treatment is exactly why I suggest people avoid it if possible. We're often left under treated afterwards and not having enough thyroid hormone is nearly as bad as having too much.

[MELINE]

thank you all for your replies. I definately have a lot of reading right now....The positive thing is that I talked to my doctor and he is SO against RAI. He didn't even want to talk about it. He told me not to worry at all, we will do our best and there is no reason right now to even think about RAI or surgery. He wants to run some more tests before he decides the right medicine for me. PLUS he gave me nutrition advices similar to the ones in your posts. He also told me to stop worrying cause I am only making things worse. ..........

I am sorry some of you had to go through bad experience with RAI. At least your bad experience can help others.

Meline

[mamaw]

Meline

I'm so glad that your doctor is not thinking Rai .Kudos for him. The doctors here only will treat with synthyroid . Kickbacks must really be good for this useless drug! I have called about ten docs in my area to see if I can try armour or even another thyroid drug & always the answer is NO....

Here in western Pa they seem to chase the alternative docs away.......

Rachel , it sounds like you may have had dysthyroid Orbitopathy like me . I do like the docs who are treating my eyes but they don't give out thyroid meds!. With this diseaseit can wax & wane for 6mo. to 5 years (the active stage) then the chronic stage. Then it goes away. Older people may only ever get it once but younger people can get it several times i their lifetime. You can do a google on it. Plus many get it before their thyroid ever is an issue.

ANd I'm still trying to get proper testing for Lyme .. our insurance is a pain plus many of the docs blow it off unless you actually get the bullseye... Ihave had several ticks & got a rash but not the bullseye.

I think everyone or many who has had the Rai regrets it... I know I do but I went down fighting but lost!

And Nancy you sure are correct when you stated dthat treatment after the fact can be just as bad... I'm living that part right now!!!!

mamaw

[Rachel--24]

Rachel , it sounds like you may have had dysthyroid Orbitopathy like me . I do like the docs who are treating my eyes but they don't give out thyroid meds!. With this diseaseit can wax & wane for 6mo. to 5 years (the active stage) then the chronic stage. Then it goes away. Older people may only ever get it once but younger people can get it several times i their lifetime. You can do a google on it. Plus many get it before their thyroid ever is an issue.

I actually have linked my eye symptoms to issues totally seperate from the thyroid problem.

I dont have any problems with my eyes now that cant be explained. I know what triggers my symptoms so as long as I avoid those things I have no problems with my eyes. I havent had any painful eye symptoms for more than 3 years now.

My biggest concern in the beginning of all this was my eyes. I guess now its the least of my concerns. I dont give my eyes much thought now because as far as that goes things are fine.

I think my eye symptoms were greatly exacerbated by the Graves....but there were other reasons for the eye pain I was experiencing as well.