[mdpw715]

in reply to: Newly diagnosed and treatment options #1185302

Hi Turquoise,
I’m so sorry to hear that you have been dealing with Graves for so long. In response to your post, I did not have RAI treatment even though both my endocrinologist and surgeon recommended it as a first line treatment option. Due to the fact that I have a high family history of cancers, I chose to go with the surgical option of a total thyroidectomy instead. I know people that opted for the RAI without any problems or issues so I want you to know that this was MY option and what I felt comfortable doing for my own personal situation. The surgery was really easy, absolutely no pain, never even took a Tylenol! I am 4 1/2 weeks post op and I feel great. They are still adjusting my Levo since it’s still a bit high and putting me into a bit of the hyperthyroid symptoms…hot, insomnia etc. but it’s really not a big deal at all. I also lost a lot of weight..40 pounds and a lot of muscle mass and stamina. In all honesty, the muscle mass loss is the biggest issues since I am (usually) very active and athletic. Again, at 4 1/2 weeks post op, I have gained 3 1/2 pounds so thats good but will admit, I still don’t have much of an appetite. I have also decided to stick with the gluten and dairy free way of eating since that actually makes me feel better, is suggested for autoimmune diseases and actually makes me feel better anyway. I have had my eyes checked throughly and have not had any issues with my eyes so I can’t help you with that other than saying good job on keeping on top of checking up on it. I understand what your dealing with but want you to know that after my surgery, literally in the recovery room, I was a totally different person, I felt happy, calm, my tremors were gone and I was at total peace with my decision. I am now off all my beta blockers for the racing heart and even with the minor medicine adjustments, I feel like myself for the first time in over 2 years. Take heart, there is a light at the end of the tunnel…do all your research and be a peace with your decision before you do it!

[mdpw715]

in reply to: Newly diagnosed and treatment options #1185297

Well, I had my thyroidectomy on Wednesday night, it lasted almost 4 hours, was told the thyroid was very sticky due to the Graves, 3 of the 4 parathyroids were left intact and one was transplanted to a muscle in my neck. I could have done home that night but since my surgery wasn’t completed until almost 11:00p.m. (surgeon had 2 major emergency surgeries that bumped my 7:15 am time back), I decided to stay the night. No pain meds needed, was up walking around 2 hours later and home the next morning, no Tums, no pain meds just the antibiotics. Here’s my question, it’s now day 3 and I have a constant “tickle” in my throat that is causing me to cough… A LOT! did anyone else experience this? Nothing was mentioned about this so not sure if it’s normal and don’t really want to put a call in to the dr. on a Saturday. Surgery was very easy and so far, recovery is a snap!

[mdpw715]

in reply to: Newly diagnosed and treatment options #1185293

Thank you again Liz, I saw the surgeon yesterday since I have decided to go with the TT. This surgeon is highly recommended by both professionals and patient, has done over 1,500 so I’m comfortable with that plus he was very calm, gave us all the time we wanted and answered all the questions both my husband and I had. He actually suggested the RAI since it’s less evasive but understood my issues with family history of cancers and increase in chance of cancers in people that have had RAI. Anyway, I’m scheduled for May 2. Today I have to start PTU since my levels were again dangerously high. They need to get them back in to the normal range before surgery to avoid complications. I’m very happy that the surgeon and my endocrinologist are working together to get this fixed. He (the surgeon) did paint the surgery and recovery a little more involved than some of the stories I’ve heard on this forum…1-3 nights in the hospital, approx 3 hours for surgery, increase in possible calcium issues since it’s harder to dissect the parathyroids with Graves patients and a 2-4 week recovery time. I’m wondering if he’s just painting the worst case scenario, did anyone else’s doctor also say this? Which brings up another issue…has anyone had problems with their insurance covering a TT when they could have done the RAI?

[mdpw715]

in reply to: Newly diagnosed and treatment options #1185291

Sorry, this is where I get a little confused and I’m going to ramble a bit here. I understand now the the Graves antibodies will not be a factor for the dosing but I’m wondering how to go forward to help control it or does Graves go completely dormant once there isn’t a thyroid to attack? Since I (currently) have the antibodies for both Graves and Hashimoto’s, what will I have after the thyroid is removed? I want to follow the most healthy way of eating to help with the autoimmune issue since there is no cure for this but the diets for Graves has a lot of contradictions to the Hashimoto’s diet, i.e. Graves said to eat dairy , cruciferous veggies etc. while Hashimoto’s said not to eat these. My Endo said that after the Thyroid is removed I can eat anything I want to without any restrictions…how does that help with the autoimmune side or again, do I even need to worry about that once the thyroid is gone? Don’t want to sound like a whinny cry-baby, but how do you know what is the correct thing to do? I’m already going gluten free just because I feel better when I don’t eat it. Am I over thinking this? Is this another anxiety issue from the Graves? I have finally heard from the surgeon but the soonest I can get in in May 10. It’s going to be a long 6 1/2 weeks but it o.k. as long as I stay somewhat stable and also because he’s the most highly recommended (most from personal and professional sources) surgeon for thyroid but I can’t wait to get this part behind me!

[mdpw715]

in reply to: Newly diagnosed and treatment options #1185289

Sorry Emmett, not sure on the excessive tiredness, if it’s right after surgery or something new to live with, I’ve heard both ways. I have always been VERY active…type A personality, tons of responsibilities so feeling tired for a long term side effect is something that concerns me. Also, in case I forgot to mention this before…I have the antibodies for both Graves and Hashimoto’s, not sure how that will play out with post TT medications?!?

[mdpw715]

in reply to: Newly diagnosed and treatment options #1185288

Thank you again for the positive feedback. There is so much information out there that is false that it’s very reassuring to get feedback from people that have actually been through this. I’m back to waiting to hear from the surgeons office, even though I’m not fond of going under the knife, I’m very excited to get this done. Although I’ve had a variety of symptoms, they have all been “not a big deal” until recently. The heat intolerance and feeling like I’m constantly on fire (even though the average temp lately has been in the 50’s) and the increasing irritability has left me feeling like a shrew. I’m normally the easy going one in my family…not so much now which is making everyone around me upset. I know that I will always have to deal with the autoimmune issues (changing to gluten free, learning to deal with stress and trying to get a quality night of sleep more often than 1 night every couple weeks) I’m really looking forward to getting back to the real me. Thank you again for all your support and input on this journey!

[mdpw715]

in reply to: Newly diagnosed and treatment options #1185284

I have another question and update. First, thank you for the help for my eye appointment, I’m very thankful that so far, the Graves has not effected my eyes. The question, I have decided to go with the TT instead of the RAI. I’m seeing a lot of information about post operative issues…a lot of weight gain, calcium problems, depression, lack of energy and excessive tiredness in spite of a full night of sleep. Can anyone tell me what they experienced after TT surgery?

[mdpw715]

in reply to: Newly diagnosed and treatment options #1185283

Thank you so much for this information, I will make sure the eye doctor does all these tests when I go on Tuesday. I’m still waiting to hear from my endocrine doc to see what the scan/uptake determine but at this point, while I’m not to crazy about surgery, I feel that surgery is the best way to go, I really don’t want to solve one health issues with worrying about future issues due to to the radioactive exposure. Thank you again for your help!

[mdpw715]

in reply to: Newly diagnosed and treatment options #1185281

I’m glad to hear that life can get back to normal after treatment. Even though I had a complete eye exam 2 months prior to my diagnosis, I have an appointment with the eye doctor Tuesday morning to him check them again before making any decisions on treatment. It seems that if there is eye involvement, RAI is not the best option. At this point, I’m leaning toward TT, it sound like it’s the better option and I won’t have to worry about long term health issues due to radiation exposure. If anyone has any questions that they asked their doctor that was helpful, please let me know.

[mdpw715]

in reply to: Newly diagnosed and treatment options #1185276

Thank you for the input, yes, I feel very stressed and pressured to find the right answers and treatment for me. I hear from all sides to make sure that I’m doing the right thing, (RAI or surgery if results show a cold thyroid) because I won’t get any second chances and while I know they’re concerned, those comments don’t help, just adds to the stress.

Regardless of which treatment I will have, do you need to be on a restricted afterward? I love seafood and gotta admit, I do like saltly snacks! How normal is life after treatment, I feel like it’s going to be a lifetime of ongoing blood tests, constant adjustments of thyroid meds and endless worry that the Graves is going to flare up and effect my eyes? Am I just over reacting and paranoid?

[mdpw715]

in reply to: Newly diagnosed and treatment options #1185273

Thank you for the information. Medications are out of the picture, liver functions prior to ATD were normal, my doc said it was to risky to continue on them since it put me on boarder line irreversible liver failure, even to try PTU put me at 50% chance of liver issues. Her plan is to see if scan and uptake come back hot which would indicate RAI path vs. cold which would mean surgery. She also said that at this time, she doesn’t see any eye involvement…don’t really understand the whole eye side of Graves, she didn’t really discuss this since see didn’t see any eye issues. Do you always end up with eye problems at some point? Can you have Graves without ever having eye problems? My Chiropractor suggested talking to an alternative/holistic doc to see if diet might help. I have gone gluten and dairy free since reading that these aggravate Graves. Have also read that diet (gluten, sugar and dairy free) will put or help put you into remissions without needing RAI or surgery. If I do go with the RAI treatment, do you have to be on a special diet for the rest of your life also?

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