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  • Grave's Disease and Weight Loss

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    Old 11-20-2008, 06:07 PM   #1
    skittles22
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    Grave's Disease and Weight Loss

    I was diagnosed a few years back as having a hyperthyroid and after having an iodine uptake test it showed positive for Grave's Disease. Unlike most people with Grave's Disease, I am actually quite a bit overweight. I started taking 20/mg of tapazole a day as soon as I was diagnosed. Most people, when taking tapazole or any other anti-thyroid medication, gain weight when I actually lost over a hundred pounds in slightly more then two months. I quit taking the tapazole and rapidly the weight came back. I don't understand why this is happening. Doctor's seem to stunned by it too, the looks I get from them when I tell them that I have hyperthyroid are actually kinda funny. They look at me like, Oh she's fat she must mean that she has hypothyroid. They do the typical bloodwork and are shocked to see that I am in fact hyperthyroid. What would possible cause me to gain weight when untreated and lose when treated? I am driving myself crazy trying to find an answer to this.

     
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    Old 11-21-2008, 04:21 AM   #2
    Reece
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    Re: Grave's Disease and Weight Loss

    I don't think you are going to find an answer. My cousin has always been very overweight, she had graves and she remained overweight, she had RAI, and she still remained overweight.

    Nowdays, she's on the same chemotherapy as my mom for a cancer, my mother is losing weight, this cousin is actually gaining.

    It's just the way a body reacts to certain things.

    To be honest, when you are hyper, you are actually hungrier than when you are hypothyroid, and that could impact it as well.

     
    Old 11-21-2008, 05:43 AM   #3
    lynnybug55
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    Re: Grave's Disease and Weight Loss

    I have read that sometimes it happens this way. Some people with hyperthyroid react this way. Try searching other boards, too, and you may find someone with the same problem.

     
    Old 11-23-2008, 06:11 PM   #4
    prairie_dawn
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    Re: Grave's Disease and Weight Loss

    I haven't been on here in a while but My concern is why would you stop taking the medicine? whether you gain or loose weight your body still needs the medicine, going off of it can create a situation that might wind you up in the ER. Do you have symptoms of HyperT?

    I have symptoms of HypoT and I have Graves, every Graves patient is different, there are no two alike no matter what any dr. might think. If you truly have Graves you NEED your medicine. You can become infertile, your heart rate can be increased causing servere problems, and untreated Graves can cause Thyroid Storm so I would recomend that you see your Dr. or Endo and get a full blood work up again and get back on Tap or PTU if you are looking to get pregnant in the future.(PTU is choice for women in child bearing age).

    Were you loosing too much weight on the medicine? Could their have been another reason you were loosing weight while on the medicine, maybe you were watching what you were eating more while on meds? Please ...know that these are just questions for yourself to answer you dont' need to answer them here. Just note to yourself if you did or didn't, have that ready for a dr's visit when you see them.

    You need to get all of your labs from what ever dr's you saw and as far back as you can get and create a spreadsheet that has all the info on it. Keep it for your records so you always have it for a new dr. if need be.

    Find a that is in your ins. company and look for an Endocrinologist, don't ask your general dr. because they will only give you who is in your plan. You can do that yourself. You need to see a dr. and find out if they are willing to work with you on this or not. Just because you are overweight doesn't mean squat, if you have Graves disease you have it overweight or not.

    Remember you walk in there with your head held HI,,,,,not down to the floor. YOU are your best advocate and you need to make sure that regardless of you feeling bad because you are overweight doesn't mean you should be treated any less or differently. Walk into any dr's office as though you are showered and dressed nicely and ready to talk professionally and ready to BE RESPECTED by the dr.

    Being dressed professionally means you will act professional and the dr will see you as a respectable person. It sounds harsh but that is the way it works unfortunately. If you walk in there like you haven't showered and hair all messy and you look desperate you will be treated so differently.

    Walk in there with your questions on a notepad and your labs as well. Say that these are your symptoms and these are your labs and you would like him/her to figure out what is the best treatment.

    Don't walk in there saying I have Graves and you need to treat me. Walk in there just as I noted above, head held hi, with labs in hand and symptoms and say that you would like to know what the best treatment is. You can even tell him/her that you wouldn't mind having another set of tests run ALSO include a Thyroid Antibody test in there as well, I see you didn't write that they ever did one so make sure you get that as well.

    If you are looking to get pregnant please stick with the PTU not Tapazole. PTU is for women in child bearing years and is better to be on if you become pregnant.

    Once you speak with an Endocrinologist (note I said Endo not your general dr. or anyone that isn't an Endo...you need an Endo for sure), once you speak with your Endo about your labs and symptoms, talk to him about going on a diet.

    Diet does not have to be for you to loose weight, it can be just any type of dietary change to your lifestyle. Like staying away from soda,chips,chocolate... or ask him if he/she thinks it's best if you see a dietician whom might be better able to help you with the weight gain and loss as you go through your journey of being on meds for Graves disease.

    Graves Disease is an autoimmune disease, it is not something that should be pushed to the side. For now don't worry about the why of gaining or loosing weight. You need to focus on what your labs looked like while not of meds and what they looked like while you were on meds.

    Prayers to you for this. keep us posted.

     
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    Old 07-02-2009, 12:40 PM   #5
    trafficzombie
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    Re: Grave's Disease and Weight Loss

    Wow, I know EXACTLY what you mean.

    I have Graves' but I have gained a massive amount of weight. I'm 5'10 and weigh about 186 now. I'm mortified. I used to weigh 100-140. Granted, 100 was pretty disgusting.

    But my doctor told me that since I get really bad heart palpitations to not work out with vigor, so I'm just gaining.

     
    Old 07-03-2009, 05:09 PM   #6
    GravesGirl73
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    Re: Grave's Disease and Weight Loss

    On the average most people with Graves LOSE weight because of the high metabolism.I have read MANY times though of people gaining weight. Usually if you are put on meds you will begin to lose the weight as your thyroid regulates itself, it works the opposite of people who lose weight, then when put on the meds, they gain it, both normal to happen.

     
    Old 11-03-2011, 04:46 PM   #7
    Dannielle12
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    Re: Grave's Disease and Weight Loss

    Hi,

    I am having the same problem. I was diagnosed with Graves' Hyperthyroidism and I am gaining weight. People don't believe me either and doctor's just think that I am really overeating...But I am NOT! It is getting really frustrating.

    Dannielle

     
    Old 11-04-2011, 04:51 AM   #8
    sammy64
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    Re: Grave's Disease and Weight Loss

    Dannielle

    I just took a peek at your other post on here. I somehow missed the second entry you made.

    While I don't know what your starting levels were, the PTU dose you were taking over the summer was higher than the average starting dose.

    And, your doctors didn't have you taking PTU properly. PTU has a short half-life and, if you were to read the prescribing instructions, the dose should be divided into 3/day.

    Taking it twice/day can actually make you a bit hypo after taking a dose and then, as the dose wears off, make you a bit hyper.

    Fluctuations like that don't feel well.....and they can actually cause an increase in antibody production. Well, antibody production is what got us sick in the first place.

    You've been on PTU awhile now and should be taking what is called a maintenance dose. The most common PTU maintenance doses range from 25-100mg (always divided into 3/day)

    You should not be dealing with weight gain at this point in time so, that tells me there's a good chance your doctors are overmedicating you.

    All too many doctors overmedicate Graves' patients just as they undermedicate people dealing with hypothyroidism.

    You should be taking the lowest possible dose that will maintain your FreeT4 level in the upper half of the range, if not higher....and regardless of TSH.


    If you have some recent labs to share (including ranges since they vary). Please also tell us if you are still taking PTU, the dosage and the dosing frequency.

    Treating Graves' really isn't rocket science but doctors don't make things easy sometimes.
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    Graves' 2007...remission 2009....hypo 2010

    Last edited by sammy64; 11-04-2011 at 04:59 AM.

     
    Old 11-04-2011, 06:35 AM   #9
    Dannielle12
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    Re: Grave's Disease and Weight Loss

    Hi Sammy,

    right now I am taking 150mg. daily split up into 3.

    I was on 2 100mg pills a day and my readings showed I was going into Hypo and then she cut it to 1 1/2 pills a day which I spread out

    And there is no instructions that come with this medication.

    Dannielle

    Last edited by Dannielle12; 11-04-2011 at 06:42 AM.

     
    Old 11-04-2011, 06:49 AM   #10
    sammy64
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    Re: Grave's Disease and Weight Loss

    Hi Dannielle

    Well, you can see that your current dose would still be higher than average considering the amount of time you've been on PTU.

    Usually, the patient starts the maintenance dose after being on the starting dose for 6-8 wks.

    Then, moving forward from there, the dose usually needs to be continually decreased to maintain the FreeT4 level in the upper half of the range, if not higher.

    It's not uncommon for endos to wait until our TSH goes above-range before they declare us hypo when, due to the Graves' antibodies, our TSH will be suppressed for a very long time.

    Your doctor should be looking at your FreeT4 levels to determine your dose.

    I'm not trying to make trouble but, my first 3 endos had no idea how to medicate for Graves'. And, in the 4+ years I've been participating on thyroid forums, it seems most doctors don't medicate properly....and the patient suffers.

    Since you are dealing with weight gain, I thought something might not be right with your dose and I offer my help in interpreting your labs.

    I took methimazole so, I don't know what the PTU prescribing information might say on the leaflet you might have received when your prescription was filled. However, if you check the prescribing information online, you will see that it's recommended that the dose be divided into 3/day.

    Best, Sammy
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    Last edited by sammy64; 11-04-2011 at 07:21 AM.

     
    Old 11-04-2011, 06:54 AM   #11
    sammy64
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    Re: Grave's Disease and Weight Loss

    Me again

    I know you mentioned that your levels showed you to be going hypo but, I do wonder if you'd been experiencing other hypo symptoms besides weight gain.

    Here's a list of hypothyroid symptoms taken from the thyroid textbook "Thyroid and Its Diseases":

    Fatigue
    Swelling of eyelids
    Emotional instability
    Lethargy

    Dry skin
    Choking sensation
    Low endurance
    Dry mucous membranes

    Fineness of hair
    Slow speech
    Constipation
    Hair loss

    Slow thinking
    Weight gain unexplainably
    Blueness of skin
    Poor memory

    Paleness of lips
    Dry, thick, scaling skin
    Poor concentration
    Shortness of breath

    Dry, coarse, brittle hair
    Depression
    Swelling
    Paleness of skin

    Nervousness
    Hoarseness
    Puffy skin
    Anxiety

    Loss of appetite
    Puffy face or eyelids
    Worrying
    Prolonged menstrual bleeding

    Swelling of ankles
    Easy emotional upset
    Heavy menstrual bleeding
    Coarse skin

    Obsessive thinking
    Painful menstruation
    Brittle or thin nails
    Low motivation

    Low sex drive
    Dry ridges down nails
    Dizziness
    Difficulty in swallowing

    Sensation of cold
    Hearing loss
    Weakness
    Cold skin

    Rapid heart rate
    Vague body aches & pains
    Decreased sweating
    Pounding heart beat

    Muscle pain
    Heat intolerance
    Slow pulse rate
    Joint pain

    Non-restful sleep/interrupted sleep
    Pain at front of chest
    Numbness or tingling
    Insomnia

    Poor vision
    Protrusion of one or both eyeballs
    Thick tongue
    Weight loss or gain

    Sparse eyebrows/loss of outer third of eyebrows
    Swelling of face
    Wasting of tongue

    Of you experience any of these symptoms, that's a sign your dose is too high. And, as I mentioned earlier, going hypo actually makes your disease worse since it stresses the body....this can increase antibody production.

    I think it's pretty clear I'm trying to help fellow Graves' patients escape some of the suffering I endured at the hands of clueless doctors.

    Best, Sammy
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    Graves' 2007...remission 2009....hypo 2010

     
    Old 11-04-2011, 07:41 AM   #12
    Dannielle12
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    Re: Grave's Disease and Weight Loss

    Hi Sammy,

    Well, I think they put me on a high dose to begin with because I was actually sitting in front of a fan 24/7. I could not move 10 steps without my body breaking out in a full blow sweat/palpitations. This went on for almost 2 months until they finally diagnosed me. We have been trying different dosages, so I'm hoping this will work.
    She did put me down to 50 mg 2x daily but I started to palpitate and sweat again so she added the 1/2 to it just recently.

    My readings were coming down (they were extremely high). I will be seeing her again Jan 16th.
    When you say doctors over medicate, do you me the Endocrinologist's or Family doctor? I see and Endocrinologist in the hospital who takes care of that and Metabolism.

    Dannielle

     
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