[needadvice]

in reply to: Just told I need to get RAI, concerned about weight #1067764

Thank you so much again Kimberly!

That is good advice about the blood tests and the RMR. I will check those out. It is funny, I just went to the dentist and had Novocaine, and I guess the normal person metabolizes it in an hour give or take, depending on their metabolism, it took me over 5 hours to start to go away and about 6 to go away! I guess that didn’t tell me anything I didn’t already know! I had to laugh.

My doctor just called, and I guess he wants me to try to stop taking the Methamzole for a few months, so I will try that. I guess my levels are very normal. But really, they have been since I found the right dosage years ago. I am very sensitive to the drug, and do very well on the 2.5 mg a day, but off it, I usually end up getting hyperthyroid, so we will see.

I do have a friend who was diagnosed with thyroid cancer and she had the thyroidectomy, and is now in her first week of RAI. And another friend who has had the thyroidectomy due to cancer and is about to get the RAI. So I am interested in finding out how they do with it. I know that first one had never had thyroid issues, and not sure about the second one.

Thanks again for all of your info!!

[needadvice]

in reply to: Just told I need to get RAI, concerned about weight #1067762

Kimberly,

That is the strange thing about endo’s, they do both thyroid and diabetes, and since thyroid patients have an increased chance even w/o the medical history of diabetes, and other auto-immune…frustrating! I’m glad you are able to keep a sense of humor! I think if I gain any more, I am going to get lipo, I know that isn’t the greatest thing, and then I will get fat in other strange places, like my feet or my earlobes, but with so many differnt issues we have to face with this frustrating disease, I can’t be sick, and also not be able to move. Just over 5′ and 200lbs, what type of life would I have…and single so no one who I can take it out on!!

[needadvice]

in reply to: Just told I need to get RAI, concerned about weight #1067761

Thank you again Kimberly!

See I think about that as well about the devil you know vs the devil you don’t.

You mention something about "any liver or WBC issues", I hadn’t heard about liver issues yet

So now that my levels seem stable, and my weight is too, I feel like I am stuck between a rock and a hard place. If I stay on the Methamazole, then I can have issues with heart, bone, white blood cells, and liver. If I do RAI, then I could die or get cancer or have a stroke or heart disease because of weight. If I get it taken out, I can lose my voice, get nerve damage, risk "hypoparathyroidism, resulting in abnormally low calcium levels in your blood and bones and an increased amount of phosphorus in your blood" (Mayo Clinic). So it all sounds like the same risks! Heart, bone, cancer, but they all have their own extra risk! Like death, hypoparathyroidism, WBC! What choices! How does a girl choose?! Oh, and RAI and Thyroidectomy also has the added high chance of being fat, with its own risks, further depression, lack of motivation, and never being happy. SIGH!!

[needadvice]

in reply to: Just told I need to get RAI, concerned about weight #1067760

Thank you Bobbi and Kimberly!

Bobbi, I’m not looking for my endo to change my levels to help me lose weight, I’m just trying to avoid being barely over 5′ and 200 lbs. I do want to have normal levels, which is very important to me, but don’t understand why if my thyroid is in the normal range why my metabolism and weight would be so off. I completely understand why if I were hyper, that would make me lose weight, and hypo I would gain, because of its correlation with metabolism, but once the levels are at normal, I feel like the weight should be as well. This site is interesting, because it is the first time I saw anything about muscle mass, which is interesting, and makes complete sense! The only thing is that when I lost so much when I initially got sick, I lost weight, then when I gained, it makes sense I didn’t have the muscle, but when I continued to gain, it was ALL fat, I wasn’t gaining good muscle, maybe some mushy muscle. I have been physically active since I started gaining weight and just maybe last year, started feeling like I was gaining some muscle, and good hard (not mushy) muscle, but still quite fat, and hadn’t lost any since I started gaining real muscle. I had a huge spare tire, and it grew outward from there into my arms, legs and face. Every time I would shop, people would tell me what to buy that would make me look more slender! Made it so I didn’t go and shop for clothes at all! This was the first time I have gotten comments like this, I never got them pre-thyroid issues. My size was larger also, so not just a weight thing, because I don’t care about the weight if the size stays the same, but a size thing as well. So what I was gaining was not muscle at all, sadly it was fat. And even more recently, the muscle I had was not helping me lose any weight that I had gained. Oh, I’m not sure if I mentioned this, I am a very healthy eater. I am a vegetarian who doesn’t eat much as far as fat (actually makes me sick I eat so little, my body can’t handle it), I rarely eat white pasta, almost never bread at all, low sugar, no sodas or liquid calories, no candy, no dessert. I buy fresh produce and cook it myself, and know what is in my food that I eat. So my diet is good, and I am pretty active, not a gym rat, but if it weren’t for my thyroid issue, I would be very fit with the exercise I do.

The Methamozole has been very regular once they found that I only need the 2.5 mg/day. I have been on that dosage probably since the first year, and it hasn’t needed to change, and my levels have stayed pretty normal. I was one of the ones that gained weight while medically (?) hyperthyroid, but at a normal level. I have been on Methamazole for about 6 years, and I guess there is heart, bone and white blood cell issues, and he really scared me about it, until I went online and got very scared about the RAI and Thyroidecomy. The RAI seemed very scary, death, cancer, radioactivity, no contact with people, disposal of anything that touches any fluids, and the insane washing, cleaning, etc.

[needadvice]

in reply to: Just told I need to get RAI, concerned about weight #1067756

Thanks Kimberly!

I do have a certain level of eye involvement, but not one that most people notice, but I do. I think the numbers are something like 19 and 21 (give or take), and I guess that is not great, but my eyelids do a good job of covering it up. That is good info about the prednisone, I hadn’t heard that yet. This whole RAI is pretty new to me, and my research hasn’t been super thorough yet. Researching just gets me depressed and overwhelmed! I am working on getting a second opinion, but find that almost all of the doctors in this medical center that I live in have the same thoughts, and think weight, eyes, mood, motivation, etc. are not related at all to the thyroid. And if it was just me posting these concerns, and no other data, then I would think it was just me, but I know that I am amongst many who feel this way, and sadly it is something that is overlooked, not addressed, and dismissed.

Kimberly, did you get RAI? If so, did you gain more weight after you got it?

Thanks again Kimberly!

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