[Kimberly]

#1064892

Hello – The biggest priority for now is to make sure that your thyroid hormone levels are normal, so that your body can begin the healing process. Unfortunately, there are no *proven* treatment options to control hyperthyroidism, other than the conventional options of Anti-Thyroid Drugs, Radioactive Iodine, or surgery to remove the thyroid gland.

A lot of docs assume that patients who are struggling with weight issues are still eating the same volume of food that they did when they were hypER…which is *not* the case for many patients. If you search the bulletin board for “weight gain”, you will see that there are quite a few other patients out there who are dealing with the same issue. In the meantime, it’s helpful to focus on whole, unprocessed, nutrient-dense foods. A food journal is also a good idea, not only so you can track your intake yourself…but it can also be helpful to show your doctor.

Wishing you all the best!

[young9319]

#1064894

I am SO glad to found this site. Sept 2011, I was having the worst muscle weakness and numbness and tingling. I thought it must be MS (I’m an RN). Out of sheer panic, I went to my doctor, they did lab and my TSH was not detected. My T4 was over 12. I was dx with Graves Disease. Got RAI approx 3 days after the diagnosis. I went back to the follow up visit after RAI (6 wks later) and my T4 was 7.08, TSH was <.008. Drew lab this week (b/c I dont think waiting 4-6 weeks to see if I’m hypothyroid is even sensible) and my T4 is now 1.46 and the TSH is .015. I would never want to sound vain, but I have worried myself into a frenzy panicking about potential for wt gain. I’ve had the wonderful privilege of not having to do ANYTHING to maintain my weight. I recognize excercise is important despite any dx, and I intend for overall health to do more and get on a routine. My endo assured me that I’d probably only gain about 5 lbs. Educating myself has shown me that he cant determine that… I called this week to get the MD to see if its time to start medication in the next week or so, well of course he didn’t agree. From my reading about this particulary period after after RAI, the T4 may fall and return to normal earlier than the TSH returns to normal. How low will my T4 need to before medication is appropriate. The ref values for the lab I use is .84-1.77. Is it not sound thinking to base my insistence on medications based on how I "feel". Right now, I feel GREAT!. My heart rate is normalized, wt stable, sleeping wonderfully, calm as a cumcumber. I guess I need reassurance to sit tight and wait it out. Im really headstrong, and I intend to pilot this part of my health, it just goes against my logic to WAIT until I become hypothyroid to do something. That to me is like waiting for breast CA to get a mammogram. At any rate, please give me some guidance so that my rationale mind can speak with the irrational part and make the best decision.

[Kimberly]

#1064895

Hello and welcome! Keep in mind that we are just fellow patients here, not doctors. Here are a few notes from the latest guidance from the American Thyroid Association and American Association of Clinical Endocrinologists:

[b:pdvr10s4][i:pdvr10s4]"The timing of thyroid hormone replacement therapy should be determined by results of thyroid function tests, clinical
symptoms, and physical examination."[/i:pdvr10s4][/b:pdvr10s4]

[b:pdvr10s4][i:pdvr10s4]"Overt hypothyroidism should be avoided, especially in patients with active GO [eye involvement]"[/i:pdvr10s4][/b:pdvr10s4]

[b:pdvr10s4][i:pdvr10s4]"Since TSH levels may remain suppressed for a month or longer after hyperthyroidism resolves, the levels should be interpreted cautiously and only in concert with free T4 and T3 estimates."[/i:pdvr10s4][/b:pdvr10s4]

So while there is no set answer to your question, the timing will depend on your labs T3/T4 as well as your symptoms. Overt hypothyroidism is the point where your T3/T4 fall below the "normal" range. It’s certainly reasonable to start asking about replacement hormone therapy as your levels start to fall towards the bottom end of the "normal" range. Also, when you are in between labs, keep an eye out for symptoms of hypo, which can include fatigue, joint pain, weight gain, constipation, dry skin, cold intolerance, and slow pulse. If you feel these symptoms coming on, call your doctor’s office and ask to have a new set of labs done more quickly.

Hope this helps!

[Bobbi]

#1064896

Weight gain is to be expected if any of the weight you lost was muscle weight. And, a part of our weight loss IS muscle loss. Muscle weighs more than other tissues, but losing it is a bad form of weight loss. We do regain muscle mass after our thyroid levels are back to controlled normal. My experience with this whole process is to be sensible and NOT fret about weight gain, but BE PROACTIVE. By that I mean eliminate non-nutritional sources of calories. Eliminate candies, cookies, cakes, fried foods, etc. for the moment. Eat well, nutrition-wise: your body needs the nutrients. But ruthlessly eliminate the non-nutritional calories. If you respond like I did to this type of "diet" you will not see excessive weight gain. Some weight gain, yes, but your clothing will still fit.

And, you cannot necessarily tell what your levels are by how you feel. Other issues factor in to how you "feel." You do "know" your body better than anyone. But it could well be that what you are feeling has more to do with something else than thyroid levels. My own experience? I’ve felt fine and had my routine blood work show a TSH of 2.0. I’ve felt symptoms I associated with hyper and gone in and had my blood work show a TSH of 2.0. I have felt like I absolutely MUST be hypo, and gone in and had a blood test show a TSH of ….yes, 2.0. Obviously, not all at once, but over time. It taught me a lot about trusting those blood tests. Raising my replacement hormone when I felt fine, but it showed "hypo," did NOT result in me feeling worse. Sticking things out when I thought things were wrong, but the tests showed normal, over a brief period of time, showed me that I returned to feeling normal after whatever else was going on subsided. You may need to experience these things for yourself.

[young9319]

#1064897

Thanks alot for your replies. I get to see the doctor on the 21st of Dec and we’ll see what happens then. I know the gaining of muscle is good and to be expected, but I dont understand how so many people who report healthy eating, excercise etc can pack on 50, 60 + lbs and all their labs be normal. I know we’re all different and one persons response to treatment in no way means my response will be the same as that. I just get really anxious to see that kind of experience repeatedly and hear that labs are normal and the doctors say nothings wrong. But I’m excited to get my labs done in a couple of weeks and see where I am and what the endo will suggest at that point.

[Pauline]

#1064898

Hello,
I had RAI in mid-October. My symptoms were mild, and the RAI dosage was small. I saw my doctor just before Thanksgiving and my "numbers" were fine. The only symptom I had at that time, that had just appeared, was swelling around the eyes. Just after that, my face became very puffy, my period stopped, I gained 10 pounds in 2 weeks eating less food–in fact my appearance changed so much, that friends and family were concerned. I have always had a normal weight, so this is very unusual for me. Anyway, I had bloodwork taken again, and yes, it was quite low, and I was started on synthroid. I have been on the synthroid for 1 week, and nothing has changed. My endo ensured me that in a week, I would feel better, and that the weight would "melt off." (Her words, not mine.) Is it common for this to happen? Should I call my endo again? Or give it more time? Could my thyroid levels be continuing to fall? Has anyone else experienced this sudden change in thyroid levels?
Thanks.

[Kimberly]

#1064899

Hello – Weight gain is very common with hypO, and you should start to see some relief once your levels stabilize. I don’t know that I’ve talked to any other patients whose weight "melted off", though! For most people, the process requires quite a bit of patience.

Also, as you can tell from reading this thread, some patients do struggle with weight issues after treatment. For now, though, your #1 priority is to focus on getting your levels stabilized, which will get you back on the road to good health.

[BeckyN9]

#1064900

I gained 10 pounds after RAI. I lost the extra weight after my number were normal. I do have to watch what I eat closely now but some of that goes along with my age and other hormone imbalances. I wouldn’t be afraid of RAI because of the weight you may gain. Just think of it as one step closer to returning to a more normal you.

[mawahit]

#1064901

Wow! I didn’t know that all this weight gain comes from muscle gain! I had RAI in October 2011, went completely hypo by the end of December. Overall I gained 10 lbs since RAI with the majority gain during just a week before I started taking levothyroxine. I have been on levothyroxine for about a week now and feel swollen all over with muscle fatigue and stiffness. My husband and I both follow Paleo diet with plenty of fresh vegetables, fruits and organic meat, fish and chicken and no grain. Plus, i am a part time group exercise instructor and the combination of weight gain/ muscle tension is hard to deal with when teaching classes.
I am very hopeful that once my thyroid drug takes effect, I will be able to loose weight quickly and my muscle become stronger. It is all downhill from RAI. good luck to you!

[Bobbi]

#1064902

"ALL" of it does not come from muscle coming back. Sometimes people regain flab, as well. If you are eating properly…i.e. the right portions, and good nutritional value…you may see some of both for a while (or not — as was my case), but there will definitely be weight gain due to the muscles returning over time.

[Princessetta]

#1064903

How soon do you usually start to gain weight following RAI ? I am a nervous wreck! I have RAI treatment Dec. 2nd and have not really gained much…3lbs up to today. Does it happen suddenly? I do not eat crazy . I have struggled with weight my entire life, weight GAIN is going to be devastating for me.

[Ski]

#1064893

Hi Princessetta,

There is no “standard timeline” or even an absolute certainty that you’ll gain — if your hyperthyroidism was diagnosed and treated quickly, you may not have lost much muscle and so would not see much difference as it is replaced. Also, sometimes RAI takes a while to drop thyroid hormone levels, so try to keep a close eye on changes (which it appears you are) and eat smart, then you can keep gain to a minimum. If you slip into hypothyroid levels, it may be tough to keep from gaining, so get to the doctor whenever you suspect you’ve reached that milestone and get started on replacement hormone ASAP (if tests prove your hunch is correct, of course), because it takes a while to build up in your system so you can feel improvement. Try not to obsess over the whole thing — you simply don’t need one more thing to add stress. If you gain a little, go get some secondhand larger clothes (large enough NOT to “squeeze” while you’re wearing them), because you won’t need them for long but you do need to be comfortable. There’s nothing quite as depressing as being reminded every time you reach for something or bend.

I hope this helps!

[Bobbi]

#1064904

You know — it’s not RAI that’s the culprit on the weight gain. People gain weight on ATDs, when their thyroid levels are brought back to normal. People gain weight after surgery, when their thyroid levels are brought back to normal. I think that because RAI is a more common suggestion from our doctors, that RAI gets the “blame” for weight gain.

So, don’t “freak” out. Become, pro-active, whatever your treatment choice. Eat well nutritionally. And strictly limit non-nutritional sources of calories.

On an aside: I have read recently, and heard from a speaker at a women’s club I’m in, that artificial sugars (regardless of their source) do not help with dieting. One source — from Consumer’s Reports Health — stated baldly that there is NO evidence (!) that substituting calorie free sugars for real sugar leads to sustained weight loss. That sounds counter-intuitive. But both the speaker and the CR report stated that there is a growing body of evidence that the artificial sweeteners, being several times “sweeter” than their “real” counterpart, stimulate appetite, causing people to eat more/bigger portions. The speaker went into an explanation that included the limbic (sp?) center of the brain — which just flew above my head — but the point she emphatically made was that to lose weight, you have to lose the added sugar, whether real or artificial. What she said underscored my recent experiences.

I do not like the artificial sugars, so I’ve never used them. I don’t drink diet sodas, etc. And at least one of the artificial forms makes me sick to my stomach. So, again, I use real sugar or none at all. Last June, I eliminated non-nutritional forms of sugar from my diet. I’ll eat fruit, but I don’t add processed sugar to cereals, coffees, teas, etc. I have steadily, if slowly, lost weight. I’m eating everything I want, including snacks, and I’m losing weight. Just FYI. 14 pounds so far. (As I said: “slowly.”)

[michakr]

#1064905

One thing that we must remember is that the RAI does not cause weight gain. The weight gain is the result of getting your thyroid working as normal as possible. With Graves the weight loss is a symptom. My sister always says that I have the good thyroid disease (nevermind that she doesn’t understand that I am now hypo). There is no good thyroid disorder. When I was sick, deep down I knew something was wrong but who complains about weight loss. After my treatment, I did gain weight, the weight I lost when I was sick. It doesn’t help when you move from hyper to hypo and loss all emotional control. I cried but once I realized how much better I felt not shaking and sweating all the time, I knew it was better. Once your levels are normalized, your weight should return to pre-graves.

[JaneG]

#1064906

I did NOT gain weight. I, too, was scared about gaining and joined Weight Watchers 2weeks after RAI. I watch every, single bit of food that I eat. I eat a ton more vegies/fruit and cut way down of breads/sugar/fats. I did not lose weight when I was hyper and while on WW, I’ve actually lost the 10lbs I’ve been wanting to lose. I’m 4 mo post RAI and 2 months into thyroid replacement and so far, so good! In fact, much better than when hyper!

[Author]

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