# Graves for the long term



## Mojito (Jul 18, 2014)

I'm wondering how many here feel that Graves has caused them some level of disability. I got diagnosed with this awful disease three years ago. I'm still on a very low dose of methimazole and my endocrinologist says I'm doing great. But I still get a little hypo or hyper and need adjustments. I still have flares of mild TED symptoms that terrify me because I fear they'll get worse, this time. I still don't feel normal emotionally, mentally, or physically and I wonder if I will ever feel truly restored to wellness. I've done the research, my docs aren't screwing up (not dosing by TSH, my FT4 and FT3 are midrange) and I really am beginning to think this is as good as it gets. Does anybody else feel this way? Am I alone? Sometimes I feel as I read that everybody gets to feeling cured at some point and I don't get why I'm not. I've had my iron, Vitamin D checked. I exercise as much as I can mostly gentle walking. I can't handle any stress or I just melt down for days. I cannot work. I used to be tougher than this, better than this and I wonder if those days are permanently in the past.


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## Andros (Aug 26, 2009)

Welcome to the board!!

Have you not considered ablation and if so, why not?

Graves' does take it's toll on the body. However, I personally have made up mind to not view myself as disabled. But then, I did have my thyroid ablated.

Life is good. So, I wish the same for you.

Many hugs,


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## jenny v (May 6, 2012)

You might also look into adrenal insufficiency. After years of stress from Graves, your adrenals may be out of whack and that can cause crazy symptoms like muscle weakness after exercise, inability to handle stress, insomnia, etc.


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## Lovlkn (Dec 20, 2009)

I felt horrible on anti thyroid medications.

Have surgery to remove - one and done then you will get onto full replacement and feel much better.


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## Mojito (Jul 18, 2014)

Thank you all for the welcome! I've ruled out radioactive ablation because I already have some eye symptoms and I just can't take the risk that it will make it worse. Surgery is a not an option either for financial and personal reasons. So I have to make the antithyroid medication work. I wonder if I would be better off on PTU? I have tried reductions on my methimazole but the hypert sympotoms return pretty quickly so I think remission is still a ways off.

Lovlkn, did you feel the antithyroid medicine itself made you feel bad even if your thyroid levels were okay?


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## Lovlkn (Dec 20, 2009)

Mojito,

It could have been alot of things - I have hashitoxicosis which was diagnosed after my surgery. My thyroid was a mess - surgeon said it looked horrible. Extremely high TPO antibodies , over 2,000 and TSI in the 350% range at time of surgery. I tried to attain remission for the 4 years but my body was out of control killing off my thyroid and spilling excess hormone into my body.

The process of my body killing off my thyroid only resulted in hyper symptoms. My endo kept me primarily hypo, I fought the entire time to stay at least in mid range but my lab's changed so often it was impossible. I had labs monthly and adjusted almost monthly. One day 4 years into the ride I suddenly went hyper - in July. My thyroid was removed December 4th. Best decision I could have made. You are spot on about removal vs RAI with eye involvement. I was lucky and only had mild lid retraction in one eye.

Post surgery I struggled to feel not fatigued and had Ferritin and D and B-12 levels checked about a year after my TT. I was low in Ferritin and D. Supplementing and getting into 3/4 to 90% range was the missing link to feeling my best. You may want to have these tests run now as many of us are deficient.

Hang in there and hopefully we can help get you in a better range where you feel better.


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## webster2 (May 19, 2011)

I feel great. It took longer than I expected but I feel more "normal" than I have in years. I see that RAI and surgery are not options for you. I wish you the best and maybe a medication change might help.


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## hyperinnyc (Apr 18, 2012)

Hi Mojito and welcome.

I have had Graves for over 3 years as well. I had my thyroid removed a year and half ago and although I feel much MUCH better without it (I was severely hyper and on a very high dose of methimazole) I never feel 100%. Ever. I have Graves eyes as well. If you are really hyper, my vote is to get it out (I'm not a doctor but I've yet to hear anyone on this site wish we had it back 

My labs are always perfect too but I fluctuate between lethargy, sluggishness, brain fog and slight mania, fast heart rate, feverish. I do feel disabled - I never know what each day will bring: fatigue or insomnia, energy or disorientation. I completely understand. I've just learned to deal (still learning lol).

Wishing you the best.


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## Mojito (Jul 18, 2014)

Hyperinnyc, the up and down is a lot how I feel too on the methimazole. The ideal spot for my thyroid hormones to sit at seems impossible to get at though I sometimes do think I experience it every now and then. I'm not hyper, I'm quite stable on variations up or down from 2.5mg of methimazole a day. I stil subjectively feel the differences of being a little too low or too high very strongly though. If you figure out how to deal please let me know the secret! Wishing you the best too!

Webster2, I'm glad things are working out well for you. You and others are proof that it is possible for it to but there's no way to know pre-operation which camp you'll be in!

Lovlkn, I've heard hashitoxicosis is a bear to manage from others too. I'm glad you were able to get your TT! I'm not sure what the heck is wrong with me really. My Graves antibodies are tested every six months are on a nice slide down - at this point less than the cut off to count as a positive result but not zero for the TSI. My TPO is below the limit. I should be feeling greeeeaaat! Instead I feel really depressed and crazy especially this week. I may ask to do my labs early.


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## webster2 (May 19, 2011)

Mojito, I was at an all time low when I was diagnosed. My endo feels I have had Graves for 20 years. I have a lot of other difficulties with the body as a result. For about 6 months before the thyroid storm, I truly thought I was bi-polar. What a relief to find out it was thyroid, and in my case, one half of a thyroid that was wreaking havoc in my life and body. I nearly lost my job and a 35 year marriage. For me, I was so low, I had no choice. I have a mild case of TED so I didn't want RAI. I had had the surgery 20 years before and it was so easy that it made sense to me. I wish you all the best.

Hyperinnyc, have you tried other medications? I started on T4 only, felt like crap. I was on Nature-throid for about 18 months. Initially, I felt good but slowly slipped into hypo again with all the symptoms and a TSh of 16. I am now on Levothyroxine and cytomel, what a difference. IT took awhile to figure out the correct cocktail. Ia m grateful I have an endo that listened to me. I hope you will feel better soon.


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## Mojito (Jul 18, 2014)

Webster wow you have been on a long journey. I'm so glad for you that you have finally found a good place with no more thyroid trouble and the right replacement - you've sure earned it! I wish that back when I was first diagnosed with Graves that I had had more understanding of how long it had been in my life and how bumpy the road ahead might be. My mother has Graves as well and to hear her tell it it was a quick and easy thing to resolve with surgery, got on replacement no big deal blah blah blah. I begin to think now she must have some sort of memory loss! I was not neary as alarmed as I needed to be to start


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## webster2 (May 19, 2011)

I think everyone's journey with Graves may be a bit different. This forum helped me to understand Graves and advocate with my health care providers for the best care. I really thought that I would never feel well again. Every day, I am grateful. I wish the same for you.


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