Graves' Disease Support Group

Graves-Basedow disease is a medical disorder that may manifest several different conditions including hyperthyroidism (over activity of thyroid hormone production), infiltrative exophthalmos (protruberance of one or both eyes and associated problems) and infiltrative dermopathy (a skin condition usually of the lower extremities). This disorder is the most common cause of...

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Frustrated

sweetsunshine91
sweetsunshine91

I was just diagnosed at the end of April. I started medication and was feeling great. Then I went for a check in and my doctor lowered my meds ( methinizole & propanolol). The past month since then I have been extremely tired. Haven’t had energy to eat healthy, workout. I’ve been super depressed, moody, extremely sensitive. I just went for another check in and found out I gained 9lbs in 1 month! I had lost 14 lbs the month prior. My doctor said my levels now went the other way where it wasn’t producing enough so that explains all my symptoms. So she lowered my medication again. I am so frustrated because of the lack of energy, the constant mood swings, the weight gain, and of having this freaking disease. It’s so frustrating to literally feel amazing and horrible all in 2 months. Night and day. Anyone that can relate or give some advice to keep fighting?

mmztcass
mmztcass
HI:

I am sorry you are having issues.

Are your Free T3 and Free T4 along with the TSH being checked every four to six weeks, at least, to keep the FT3 at mid range and the FT4 closer to the upper third range of the lab reference ranges? This will help by taking just enough meds of the ATD (antithyroid drug) to help you to be as symptoms free as possible.

{{{hugs}}}
1mhealed
1mhealed
Sorry to hear you are struggling, and most of us do. I would like to encourage you, do not give up. I did not do research when I was diagnosed in May and I regret that I didn't. My advice to you: please research. Try to eat as much anti-oxidant food, others do well with Paleo, gluten-free, ketogenic diet - or at least bits of/combination of these. I also had RAI which, if I did my research, I should not have done. Good luck and be well.
Siddah
Siddah
Research is very important. I suggest you read Elaine Moore’s books on Graves Disease. She also has a great website. As you learn about Graves, you may find that your Endo’s knowledge and treatment plan don’t work for you. It’s okay to change doctors. Good luck and keep learning....
sweetsunshine91
sweetsunshine91
mmztcass: I'm still new to understanding this but I believe she tested my T4 & THS.

1mhealed: Thank you so much! I'm thinking about seeing a dietician/nutritionist to see what would be best for me diet wise.

Siddah: Thank you! I am definitely doing my research now. So excited I came across this site! So much good advice!
StillLearning
StillLearning
Hi sweetsunshine91,
Welcome to my world. Diagnosed in February. If you get a chance, you can read my other posts in Grave Disease Forum. (They are long) In a nutshell. 10mg/1st month, 5mg/2nd month, 2.5mg for one week then cold turkey. I have had 5 blood tests so far. Request a free T3 & free T4 and T.S.H. (At least) after 4-6 weeks of taking the meds. My Endocrinologist saw my numbers going into HYPO, that’s why she stopped my meds. I am on 2.5 every other day for the next 6 weeks. Then I take my blood tests again. Understand, we are kind of like lab rats. The doctors want to see our thyroid hormones become balanced - normal range. BE your best advocate - research. I experienced your HYPO symptoms but I didn’t gain any weight. What are your numbers? I’m here if you’d like to talk. Take Care.
32Flavors
32Flavors
Honestly, @sweetsunshine91, I haven't felt "great" since things went haywire. But when I was diagnosed a couple months I go, I was put on 30mg/day of MMI (and 50mg Atenolol). They've tested my T3, T4 and TSH every 2-4 weeks. I've been reducing my Atenolol myself (since my heart rate has been normal) and have been down to 1/2 a pill a day for a couple weeks. My last results my T3 and T4 were in normal ranges, so yesterday my endo dropped me to 10mg/day of the MMI and said I could quit taking the Atenolol altogether. I do feel much better than before I started treatment. But my energy is low and I'm gaining weight (I was happy to see the weight go when I was diagnosed...I don't want it back!). Not really sure if my depression is me still trying to accept my diagnosis, a result of GD, the meds, or all of the above. I've read a lot online about GD and expect to have some ups and downs, but hope they're not too drastic. I know I'm still on a pretty high MMI dose, so I expect it'll send me hypo...we'll see with my follow-up blood tests.
Long reply to assure you that what you're experiencing is apparently common for those of us "lucky" enough to have GD. It also seems common that we have to be our own advocates, so be sure to review your own blood tests to ensure they are testing your Free T4 and T3, so you can work with your doctor to find the right dosing. I have easy online access to my results, so I know my numbers before I even go in to see the doctor. So far, I have no issues with my treatment, but my endo doesn't believe diet has an affect (other than iodine), so I'm on my own for figuring out how to naturally treat GD.