Viewing 12 posts - 1 through 12 (of 12 total)
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  • shegant
    Participant
    March 17, 2012 at 11:39 pm
    Post count: 2
    #1058904

    My 19 y/o daughter received RAI six months ago, is now hypo, and is finding these symptoms to be very upsetting. I would love any encouragement at this time. She is severely tired, depressed, and irritable. She has gained 30 lbs. since her RAI, which is devastating for her. She is researching various diets that she thinks may work well for her, i.e., Nutrisystem, Advocare, South Beach, Weight Watchers. She is a Freshman in college and has never had to worry about her weight (when she was hyper she ate absolutely anything and everything she wanted) she also was an athlete in high school, which helped keep her weight down.

    Now, she is adjusting to this new diagnosis (diagnosed in July 2011) and adjusting to college life and living on her own. Also, she is struggling so much in school her Freshman year of college. She has always been an excellent student (A’s & B’s), but is really struggling with concentration and memorization and had to do a medical hardship withdrawal on two of her classes because she was failing them.

    This disease has been devastating to her. She is really wishing she wouldn’t have gone through with RAI (she says she would rather be hyper than dealing with the current symptoms), but realistically we know the hyper symptoms were very serious and she had to come to this decision regarding treatment. She says she “just wants her old body back”.

    If anyone has any words of encouragement for her or myself, we would love them. I am very worried about her. Her Endocrinologist keeps telling her she should be feeling better by her next three month appointment, but so far she is feeling worse with different symptoms and she is very discouraged. Her main areas of concern are the weight gain resulting from RAI and becoming hypo and the effect this has had on her college career.

    Thanks for the support!

    Bobbi
    Participant
    March 18, 2012 at 5:49 am
    Post count: 1324
    #1170798

    If I were in your shoes, I would remind my daughter of the dreaded Freshman Fifteen. That is the term we all used (and that I still hear from time to time, eons later) for the weight gain freshman year in college. I gained weight; my son gained weight; lots of kids gain weight freshman year. Kids leave home, and mom’s cooking to eat who knows what, in who knows what quantity. And start drinking beer. Etc. Some of the weight gain she has experienced is due to returning muscle after successful treatment of hyperthyroidism (We lose muscle while hyperthyroid, and it comes back slowly once we are at controlled normal levels of hormone). Some of her weight gain is undoubtedly due to eating habits and exercise levels.

    Second: we often make the mistake of assuming that because we have had a successful treatment for our hyperthyroid condition, whether it be surgery, or RAI or ATDs, that we should feel well again right away. We don’t. Think in terms of hurricanes. Having too much thyroid hormone is like a metabolic hurricane. Just because the winds of the storm go away, it does not mean that everything is instantly back to normal. It takes time to rebuild. Your daughter’s body needs time to heal AT normal levels of hormone for (what seems to all of us) a long period of time. It takes months AT normal levels before we begin to feel normal again. My GP suggested an average of nine months, which was a number that horrified me at the time, but looks about right in retrospect.

    Third: If it were my daughter, I would caution her against any and every diet that seeks to rule out whole categories of healthy foods. Those diets may help folks lose weight, but they gain it right back as soon as they quit them. They are not sustainable diets. It might help her to start keeping a log of what she eats and drinks. It has been shown in studies that writing down what we eat, helps folks to lose weight. (I know that when I write it down, I remember the morning doughnut when I’m looking at the evening dessert.) Then, after two or three weeks or so, she could consult a nutritionist. I think most of us underestimate the number of empty calories we ingest during the course of any given day, unless we are confronted with the number in black and white. I began a Weight Watchers approach last year, eliminating only added sugar (including the artificial stuff) and cookies and cakes, and over the course of the past almost year, I’ve lost 14 pounds. I had no idea that the sugar in my two cups of morning coffee, and the sugar on my cereal, and the two or three cookies (I thought) that I ate in the afternoon, could count up to 14 pounds. But they did. Anyway, when your daughter is recovering from the ravages of being hyperthyroid, she needs good nutrition of all sorts. Now is not the time to deprive her body of healthy nutritional building blocks.

    Lastly — perhaps, unless I think of something else — make sure that your daughter understands how to take the replacement hormone properly. It is important that she be totally consistent in how she takes the replacement, in order to avoid hormonal rollercoasting. She should take it as soon as she wakes up in the morning, with a glass of water. She should wait a minimum of 30 minutes before eating anything. She should not take vitamins or other supplements for FOUR HOURS after taking the thyroid replacement. This may not be easy for a college freshman who wakes up two minutes before the 8am lecture, but she will be much better off if she establishes a routine that assures the proper level of absorption of her hormone pill.

    It takes time to heal. But we do get well again. And weight issues, given the proper diet and the proper levels of exercise, do return to “normal” — whatever normal might be for that person. Many of us struggle with weight and it is frustrating — but that is true of the general population, not just those of us who have been treated for hyperthyroidism.

    Hugs to both of you.

    Kimberly
    Keymaster
    March 18, 2012 at 1:42 pm
    Post count: 4294
    #1170799

    Hello and welcome – I absolutely agree with Bobbi’s comments about the importance of focusing on healthy foods, tracking one’s food intake carefully, and avoiding diet plans that eliminate major food groups.

    However, my experience regarding weight loss is different from Bobbi’s, as I *have* struggled with weight issues post-treatment (methimazole), despite leading an active lifestyle and carefully tracking my food intake. In fact, I used to lead meetings for Weight Watchers prior to diagnosis, and had to quit last year, because I had such a hard time maintaining my goal weight…which I had previously maintained for 3 years with no problems.

    I know that my situation isn’t all that unusual, as we did a poll on our Facebook page about weight issues. At last count, 60% of respondents (out of about 70) said that losing weight after treatment was “extremely difficult”. About 15% said that losing weight was “challenging, but manageable”, and another 15% said that they had noticed no impact after treatment. (The remainder had either regained the weight they lost or said they had difficulty GAINING weight after treatment).

    There haven’t been many good studies on this in adults, but one presenter at our 2011 Boston conference looked at children who were treated for Graves’…many of them *did* have issues with weight gain. I wish that researchers would take a closer look at this in adults.

    (Note on links: if you click directly on the following links, you will need to use your browser’s “back” button to return to the boards after viewing. As an alternative, you can right-click the link and open it in a new tab or new window).

    http://www.endocrinetoday.com/view.aspx?rid=87077 [endocrinetoday.com]

    During a panel discussion at the Foundation’s 2009 conference in Charlotte, one of the doctors on the panel indicated that it’s possible there might be a “resetting” of one’s metabolism following thyroid issues.

    Also, an attendee at our Boston conference, shared this study from 2008, which was part of the Framingham study, a large study that was initially organized to identify risk factors in cardiovascular disease. These researchers found that participants tended to gain weight as their TSH increased – even if TSH remained within “normal” levels.

    http://www.ncbi.nlm.nih.gov/pubmed/18362250

    I’m not a doctor or a researcher, but personally I wonder if this isn’t why many patients do struggle with weight issues after treatment – the fact that many of us go from an almost undetectable TSH to back within the “normal” ranges.

    Bottom line, it’s important for your daughter to continue fighting the good fight and make healthy food choices for herself, rather than just giving up, which is *certain* to make her weight increase even more. But personally, I take some comfort in the fact that there very may well be a physical reason as to why weight loss is more difficult after treatment. I’ve had contact with many patients who have struggled with weight issues despite being super diligent with food intake and activity – and it’s really discouraging to have doctors tell them to “just eat less and exercise more”. For some patients, it may be that simple – but not for everyone.

    Bobbi
    Participant
    March 19, 2012 at 5:47 am
    Post count: 1324
    #1170800

    In the most recent studies (2011), it has been shown that approximately two-thirds of the American population is overweight, and well over one-third (36+%) are obese. Unless data for Graves patients is statistically higher than that — which does not seem to be the case — it is very hard to argue (with our doctors) that our weight issues are Graves-related.

    I don’t think it matters. It is frustrating to weigh more than you want to weigh. That has been the case for me almost all my life — except for four years or so immediately after my Graves treatments, when I was arguably too skinny. I can blame American portions, American fast food, the fact that sugar is in almost every processed food, or Graves…..I got lots of places to hang the blame, if that is what I want to do. I don’t think it matters unless whatever reason we latch onto gives us some realistic chance of changing things. If only a little.

    shegant
    Participant
    March 19, 2012 at 7:37 am
    Post count: 2
    #1170801

    Thanks for the response(s). I understand that her Graves is the reason for the weight gain, but she is not willing to accept this currently and wants to do everything she can to lose the excess weight. She is trying to do what she can to take control and take some positive action in her life. I am trying my best to be an ecouragement to her and pray that she will be successful. I am worried about how this is effecting her mental health. She is seriously depressed about this, as well as, the fact that she has been struggling in school. She has always been an excellent student and is frustrated with having to medically withdraw from two classes, due to failing them.

    I know it is easy to make these situations seem trivial, but to a 19 y/o who was newly diagnosed and should be having the time of her life, these are huge issues. Her Endocrinologist has suggested putting her on an antidepressant and I am hoping that this, with lots of prayer, encouragement, and time will help her to come out the other end in a positive light.

    Blessings to anyone who is dealing with this life changing disease!

    snelsen
    Participant
    March 19, 2012 at 8:55 am
    Post count: 1909
    #1170802

    To shegant.
    I sure am sorry about your daughter having to be saddled with Graves’ as she begins another milestone of her life. She has so much on her plate. It is easy for her to relate to her situation. One thought I had (on a practical level) is for her to drop a class if the quarter has just begun, and she is able to do that. It’s another way for her to have some control. It is an executive decision she could make right now. I have no idea is this is applicable for her.

    Re Graves’s now for her. One variable about being hypo that I did not see in your email, is if she is having labs on a regular basis. Has she begun taking thyroid replacement hormone yet? I KNOW what it is like to be hypo. I spent all last year trying to reduce my Synthroid dose.

    My situation is different. A couple years ago, I felt fine on my dose, but my labs indicated I am hyper. But that has been the same situation for over 12 years. So, because of the concern of the endo about a slight increase of cardiac risk, I agreed to reduce Synthroid from 125mcg down to 77mcg, very slowly, in a time period of approximately 15 months. The point of this is, that I became hyPO. It was terrible.
    .
    HyPO symptoms are every bit as depressing, devastating, life-changing, as hyPER symptoms.

    I realize she had RAI about six months ago, and have no idea if her labs are representing decreasing thyroid hormone in her system, but I am assuminso, because she is hyPO. I am hoping she is having labs, has notified her endo how she feels, with her hyPO symptoms. I’d like to think that the endo might increase her thyroid hormone, with regular labs, and that she might notice a positive difference in how she feels.

    I sure am sorry she is having this rough spot at this time in her life. The weight issue, plus fatigue is so demoralizing.
    Do write again.
    Shirley (mom of grown kids, one of whom was hypo as a freshman.)

    Kimberly
    Keymaster
    March 19, 2012 at 10:17 am
    Post count: 4294
    #1170803

    @Bobbi – I haven’t seen any particular stats on weight issues for Graves’ patients vs. the general population (this would be a great area for research!), but I think that the studies that I referenced above indicate that there very well may be an effect on weight — at least for some patients. And I have seen the effect that Graves’ has had on my personal weight issues. Prior to diagnosis, I had maintained my goal weight for about 3 years. I wasn’t hypER during that period, as I have lab results from prior physicals, and I wasn’t trying to maintain an unreasonably low weight — I was right in the middle of the “healthy” BMI range. Since diagnosis, it’s been a constant struggle. And the only way I’ve gotten close to that goal weight in the last couple of years was to severely restrict calories (to the point of weighing spinach, cucumbers, and celery) and work out like a madwoman — neither of which were really sustainable for the long term. And from talking to other patients, I don’t think I’m alone in this. I absolutely agree that for anyone who is struggling with weight, the first step should be to take a close look at their food plan and to eliminate empty calories and mindless snacking. But I think it’s important to recognize that there are patients out there who are doing all those things right and are *still* struggling with weight issues.


    @Shegant     – I hope I didn’t give the impression that your daughter should just give up and “blame” her Graves’ for her weight gain! Following a structured program (as long as it is nutritionally sound) can certainly be helpful for someone who is struggling with weight issues. Maybe she will find the right program that really “clicks” for her and where the weight will start to come off at a steady pace. But she will need to be patient with herself and her body if the weight doesn’t come off as quickly as expected. At that point, it’s helpful to set some goals that are not weight related (i.e. increasing endurance, strength, etc.). Wishing you and your daughter all the best!

    trlrunner
    Participant
    March 28, 2012 at 5:50 pm
    Post count: 13
    #1170804

    This is an interesting subject for me. I was diagnosed with Graves in late Feb 2011 and chose to try methimazole to manage my Graves. I rode a roller coaster of blood level ups and downs for the year I was on the methimazole – we could never get my levels to stay in a steady place. Consequently, I bit the bullet and had RAI done 6 weeks ago. As I have mentioned in previous comments, I am a female, mid-40’s endurance athlete – longer distance trail running and cycling – and have never ever had to worry about weight issues. I have read all of the horror stories of post RAI folks who gained weight uncontrollably. I grilled my newer doc, whom I switched to prior to the procedure, about the potential weight issue/fear following RAI. She assured me that IF I was diligent about maintaining my NORMAL healthy diet and training (training level pre-Graves), then, once we had my Synthroid dosage dialed in, I would “revert” back to my normal self and the weight concern would be a mute point. Interestingly, she also mentioned adding cytomel to the mix if need be. I know that not all endos agree with using cytomel. She is part of a well respected endocrinology teaching, research, and treating team. At this point, all I have to say is, “Time will tell.” My heart goes out to all of those who do struggle mightily with weight issues – it is a huge fear for me – a fear I hope does not ever materialize.

    And just a little tidbit for Kimberly since you mentioned struggling with weight issues while on the methimazole – The last few months I was on the methimazole, I started noticing a change in my weight – subtly so. Even though I was carefully monitoring my eating, and continuing to run and ride to the extent I could, I was starting to notice a gradual uptick on the weight. I had gained back the 10 pounds I had lost initially with the Graves early on so the couple of pounds increase was above and beyond my pre-Graves weight. And, the slight weight increase was not from rebuilding muscle. It looked like fluff to me! :-) That was the problem I noticed while on the methimazole – even though I certainly felt better than in my “acute Graves” state, I never felt “normal” and could never rebuild my muscle tone or endurance and was actually starting to see a gradual and incremental deterioration in my capacity to do the things I love – running and riding. For me, I was questioning the methimazole long term and that’s what pushed me to RAI. Anyway, I just thought to add that as an FYI. Thank you Kimberly, Bobbi, and all of the other moderators – you do us all a great service! :-)

    Kimberly
    Keymaster
    March 29, 2012 at 11:26 am
    Post count: 4294
    #1170805

    trlrunner – Thanks for your comments…yes, I definitely notice that my extra weight has come back as “fluff”, as opposed to muscle. And while I used to primarily gain weight in my upper body, these post-GD pounds seem to be clinging stubbornly to my middle! 😮

    Interestingly, I’ve had contact with patients who have been through all three treatment options, some of whom said they did have weight problems, and others who regained the weight they lost while hyper and had no further issues. I would love to see some more research done in this area!

    sarah46112
    Participant
    May 14, 2012 at 10:19 pm
    Post count: 1
    #1170806

    The first thing I have to say is I understand your daughter’s distress I was diagnosed in 2007, by accident after labs came back from my OBGYN.

    BAD NEWS: At first I became hypo and I gained a hundred pounds in a year consuming under a thousand calories a day and working out three times a week after RAI. I had weekly migraines that would leave me helpless.

    Good News: Fast forward to today, over the last four months I have added 5 MCG of Cytomel Tabs to my daily routine and started working with a weight loss doctor who is helping me jump start my metabolism with prescriptions. I have lost 30 pounds and feel great. I haven’t had a migraine in over three months my moods and hormones have stabilized.

    My situation may be unique because I was not absorbing any Synthroid so I am taking 250 MCG Synthroid in addition to the Cytomel. I am testing every six weeks. My doctor explained to me that my body needed an active hormone to stimulate the inactive one to help it work. We are talking about cutting my Synthroid dose in half and I can once again start taking generic so that will cut costs for me.

    I am taking Zonegran for my migraines and low doses of phentermine for weight loss. This is the best I have felt in the last five years. I am crossing my fingers to see if it makes it through the nine month cycle. Wish me luck..

    Sarah ;)

    Kimberly
    Keymaster
    May 15, 2012 at 11:42 am
    Post count: 4294
    #1170807

    Those who have struggled with weight issues might be interested in this presentation from Dr. Scott Rivkees at the Foundation’s 2011 Boston conference.

    This was prepared for parents of children with Graves’, but has a lot of great information for *all* patients, including the results of an interesting study on weight gain and hyperthyroidism at the 12:00 mark.

    (Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing. As an alternative, you can right-click the link and open it in a new tab or new window).

    http://www.youtube.com/watch?v=oC_yM7Lk1pI

    Kimberly
    Keymaster
    May 15, 2012 at 11:45 am
    Post count: 4294
    #1170808
    sarah46112 wrote:
    My situation may be unique because I was not absorbing any Synthroid so I am taking 250 MCG Synthroid in addition to the Cytomel. I am testing every six weeks.

    Hi Sarah – Hopefully, you will see some relief from this change!

    Otherwise, you might ask your doc about testing for Celiac disease or other GI issues. This was an interesting study recently published on Celiac and absorption of replacement hormone:

    (Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing. As an alternative, you can right-click the link and open it in a new tab or new window).

    http://www.thyroid.org/professionals/publications/clinthy/volume24/issue3/clinthy_v243_4_5.pdf

    Take care!

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