[needadvice]

#1018904

I just went to my new endocrinologist, he told me that Methimazole is only a short term solution to see if I would go into remission, which I did not. I was diagnosed with Grave’s about 6 years ago.

Let me start at the beginning. When I first received treatment, I was given too strong of a dose, and was thrown into Hypothyroidism. (I guess I am very sensitive, and I only need 2.5mg a day.) Before I got sick, I was about 115 or 120 (too long ago now to remember), then got down to about 102. I started taking the Methimazole, and quickly gained about 40 lbs. I tried every diet, from a professional licensed nutritionist (gained 10 lbs), to starving myself and exercising for hours a day (gained 10 lbs) to Weight Watchers (gained 5 lbs). I tried the Fat Flush Diet, another diet, blanking on the name right now, but very low carb and no sugar, no milk, and a few other insane things that were off limits. Regardless… The 40 lbs I gained very quickly, and then I plateaued. I was on a diet of one sort or another for years, and have diet journals to prove it! I started writing down things that would make me sound anorexic to most people. Finally I gave up because I realized that it didn’t matter how much I ate or didn’t eat, what I ate or didn’t eat, and how much I exercised, I wouldn’t gain or lose weight. (I had gained 3 lbs since the initial 40 lbs). Oh, and my levels for the most part have been normal.

Recently I started to feel like something was off, I could start to feel my heartbeat again, started to feel shaky, and my throat was bothering me a lot, almost like I couldn’t swallow well because of my enlarged thyroid. Luckily my appointment with my new doctor was coming up (it was yesterday). That is a whole issue in itself! Why are there no good Endocrinologists? They all think that I am eating a ton of food and don’t realize it. They have NO idea how I’ve been killing myself over the years! So much I cry each time I talk about it with an Endocrinologist, because they just won’t listen to me! Anyway, my tests aren’t back yet, hopefully I will have them tomorrow, so I will update you when I get the results.

So, this new Doctor said that Methamazole is for short-term, like 2 years, and that there are all of these side effects, like issues with heart, bones, and something about if I get a sore throat or a fever, not sure what that was about. He said that he recommends Radioactive Iodine (RAI). I asked if that will make my eyes protrude more, he said no, then asked if it will affect my chances of getting pregnant, he said no, and he said that I have to wait 6 months, but it won’t decrease my chances, and that it may make me go through menopause 3 months early. I asked if it will make me gain weight, he said no, and then said that he doesn’t believe that there is a correlation, and said what every other endocrinologist says, that there is no relation with weight gain and the thyroid, and that I have to watch what I eat, and that is why thyroid patients gain weight is because they eat more than they realize and that they are essentially in denial, buyt he denies any relationship between the thhyroid and metabolism, uh, then why do they call it "Endocrinology/Diabetes and Metabolism"? Moving on, I know that it is because years ago people would take thyroid hormones in order to lose weight, and they can deny it to those people, but to deny it to a desperate thyroid patient who feels ignored and helpless and hopeless?! So because he doesn’t see a relation between thyroid and metabolism (and I waited 6 months for this appointment?!) I feel like he is not a good resource in telling me if I will or will not gain weight after the RAI (or for that fact a thyroidectomy). I have a feeling I know the answer, that I will, and then I will be 80 lbs heavier, ok maybe not 80, but close to it! I don’t know that since I have had Grave’s for so long, or since I have already gained 40 lbs as a Grave’s patient, which isn;t as common, since Hyperthyroid tends to have a higher metabolism, or if that means that I will gain even more than what others have reported!

Also, any thoughts on RAI vs. the thyroidectomy? I know many Doctors prefer RAI, but I have a feeling because it is "easy" and "less invasive". I am worried because I have read articles that say that there is a higher chance of death in the first few years, (not sure why exactly), and that there is a higher chance of cancer. Also, I read that you should stay a distance from people, especially if exposed to them for more than 2 hours for 11 days!! That is a long time! Plus any bodily fluids, like tears, which I am sure I will have lots of, have to be flushed twice?! Sounds pretty serious! Also, I heard that many people who get RAI become very depressed, and often unable to do basic things like work! I am finally feeling ok, and am finally trying to live my life, and now I am worried about all of the bad side effects, and also worried that I will also have more protrusion of the eyes, and become infertile and gain another 40 or more lbs, and not be able to be close to another human, or my pets for 11 days and then be so depressed.

Is the thyroidectomy any better of a solution? How bad would it be to stay on the Methamazole? Or does anyone have any real suggestions as alternatives that have actually worked? Or any suggestions as far as resources, or doctors, or articles that address any of this? Or any doctors in the Boston area? I am so frustrated and upset right now, and I feel like my options are terrible!

Thanks! Any suggestions would be greatly appreciated!

[Kimberly]

#1067755

needadvice wrote: He said that he recommends Radioactive Iodine (RAI). I asked if that will make my eyes protrude more, he said no

You said "make my eyes protrude more…" Do you already have some level of eye involvement? Some endos will not recommend RAI at all for patients with thyroid eye disease, and others will recommend a course of prednisone in conjunction with RAI to try to keep the eye issues from getting worse. Can you get a second opinion?

Others who have had RAI can address the weight issue. I did not lose weight while hyper, and I have packed on about 13 *additional* pounds during my 2 years on methimazole. It’s incredibly frustrating, so I feel your pain!

Best of luck!

[needadvice]

#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!

[Bobbi]

#1067757

Endos typically will not adjust thyroid hormone levels to try to help someone lose weight. The dangers of having too much thyroid hormone — even little bits too much — are significant: bone loss; muscle loss; potential for thyroid storm; etc. And, quite frankly, anyone who tries to lose weight that way — by taking extra doses of thyroid — is playing a metabolic form of Russian Roulette.

As you have noticed, it is possible to gain weight even while on the ATDs. Your major concern cannot be weight gain. That obviously is a concern to us, but it shouldn’t be the major one. Your major concern must be "Is the treatment controlling thyroid hormone levels in the ‘normal’ zone?" The treatment option is not the problem — weight gain could happen with meds, RAI or surgery. One of the reasons we often (but not always) lose weight while hyperthyroid is due to muscle loss. We lose, gradually, muscle — especially the large motor muscles in the legs, arms and chest. Muscle weighs more than other body tissues, but it also uses more calories. So, depending upon how much muscle is lost, there can be significant changes to how much we can eat without gaining weight. (This may be why some folks gain weight while hyperthyroid.) When we regain normal levels of hormone, the muscle gradually starts to come back. But, according to one of the endos that spoke at a conference a few years ago, it is "mushy" muscle (her words), and needs to be exercised, toned, for it to be strong again. This returning muscle appears on scales as weight gain. But it is good weight to gain because it allows us a higher calorie intake. I mention all of this because just looking at the scale is not the way to evaluate what is going on.

Anecdotally, I lost an additional 20 pounds after RAI. I ate nutrionally dense foods, I planned snacks for in between meals, and I ruthlessly eliminated all "empty" calories. That doesn’t work for everyone, apparently, but it did for me. I DID regain those twenty pounds eventually, over time, but most of the weight gained was muscle (I didn’t change clothing size), so it didn’t matter to me.

Make your treatment decisions based on what controls your thyroid hormone levels well. If the ATDs are in fact controlling your thyroid levels, and you are not experiencing side effects, there are endos around that let their patients stay on them for years. If, however, your levels fluxuate a lot, requiring dose changes, you might be better off choosing one of the "permanent" options: removing the thyroid (via RAI or surgery) and then taking replacement hormone. If enough of the thyroid is removed, typically we do not go through regular fluxuations from hyper to hypo and back.

[Kimberly]

#1067758

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

Hello – no, I have not had RAI. I am currently maintaining my levels at 7.5 mg/day of methimazole, although I’ve had to make a couple of dosing adjustments over the last couple of years to stay in the "normal" range.

As long as I can remain free of any liver or WBC issues (and I get this tested regularly), my philosophy is that "the devil you know is better than the devil you don’t". ” title=”Wink” />

[Kimberly]

#1067759

Bobbi wrote: Endos typically will not adjust thyroid hormone levels to try to help someone lose weight. The dangers of having too much thyroid hormone — even little bits too much — are significant: bone loss; muscle loss; potential for thyroid storm; etc. And, quite frankly, anyone who tries to lose weight that way — by taking extra doses of thyroid — is playing a metabolic form of Russian Roulette.

While I agree with this, it would still be nice if our endos took *some* interest in our weight issues…as excess weight can increase our risk of stroke, heart disease and some types of cancer. Also, I have diabetes on both sides of the family and my blood sugar constantly tests in the upper range of "normal". My general practitioner has told me that I *need* to keep my weight in a healthy range if I don’t want to follow the family tradition and wind up with diabetes.

Although now that I think about it, maybe that’s why my endo’s office doesn’t seem to care. If I get diabetes, then they can charge me for *two* diseases instead of one. ” title=”Razz” />

[needadvice]

#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]

#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]

#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!!

[Kimberly]

#1067763

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

Yep, each of the 3 treatment options has pros and cons…and one of the concerns with anti-thyroid drugs is the potential for liver problems and/or a severely reduced white blood cell count. This is a *rare* side effect, but patients do need to be aware of it. With every blood test that I have done, I get a Complete Metabolic Panel (which checks for liver function) and a Complete Blood Count (which provides info on the # and type of white blood cells in the body).

The good news is that if these side effects are caught early, the damage can usually be reversed when the meds are stopped.

One of the doctors said at this weekend’s conference that the liver/WBC side effects "never" occur after the first 90 days of treatment, although if you stop and re-start for any reason, the 90-day period starts over. I think "never" is a pretty strong word, but it’s reassuring to know that at least this physician has never seen these complications past the 90-day mark.

As for the weight issues, we had an interesting presentation from a nutritionist during one of the breakout sessions. She utilizes Metabolic Testing to check the Resting Metabolic Rate (RMR) of her clients. This is the amount of calories that our bodies consume at rest to keep our heart, lungs, etc. working.

She provided one example of an actual client wo had RAI and is on replacement therapy. There is a "standard" calculation based on weight, height, and activity level that many people use to determine RMR. However, she found that this woman’s RMR was actualy about 150 calories a day *less* than the standard. I wanted to say, "THANK YOU!!!!!" *Finally*, someone acknowledges that even though our levels might be "normal", our metabolism might be different than it was before. It’s still all about calories in vs. calories out, but the degree of difficulty goes up a notch for those of us who have had thyroid trouble.

If you are interested in getting your RMR measured, the presenter said that the Charlotte YMCA offers testing…so other local YMCA’s might also offer this service. I think my doctor’s office does this as well, so I am going to check it out.

Best of luck!

[needadvice]

#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!!

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