Hashimoto's Thyroiditis

I've been living with this disease for about 5 years now and still don't quite have the meds right. Prior to diagnosis, I was the thinnest I have ever been - 136 lbs, 5'7. Since starting the meds, I have gained 30 lbs. I can eat perfectly for a week, loose 2 lbs and have once cheat day and gain it back plus 2. I consistently work out 3-5 days a week, running, elliptical or weights. Initially part if the problem after being put on meds was I was starving ALL THE TIME. I could eat a huge meal and 10 minutes later I was starving again. Not hungry but ravenously hungry. I worked with a trainer and nutritionist and we did a 2 week reset that kind of got that back under control and I am not constantly fighting the need to eat, but I am just stuck. I can't seem to loose weight and keep it off. I am going to give myfitness pal another shot, really try and stick to it and see what happens, but I am wondering if anyone else struggles with Hashimoto's and what has worked. Thanks.
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Replies

  • amelisegb
    amelisegb Posts: 58 Member
    Hello! I don't have Hashimoto's, but I am part of this group: https://community.myfitnesspal.com/en/group/111724-getting-fit-with-an-autoimmune-disease

    It's a very slow group, but there are a few posts others have made about similar issues, including a Hashimoto's thread. You might find someone to reach out to on there, or in a similar group.
  • SCoil123
    SCoil123 Posts: 2,108 Member
    edited June 2018
    Eating similar to paleo style helped reduce my hashimotos flares but I struggle to stay on such a restrictive eating plan. My hashis is usually well managed now but the first few years my levels were all over the place - I would balloon up 20lb then without changing anything drop a bunch of weight. It was frustrating. For three years while we built my treatment plan I kept a closet full of sizes 6-12 because I never knew what would fit the next day

    The reason I mentioned the diet was because for me when symptoms flare up they come with a lot of inflammation and water retention which can cause me to jump 1-2 pant sizes overnight. The special diet helped stop this and improved my joint pain and energy levels
  • BeverlyMoss1959
    BeverlyMoss1959 Posts: 2 Member
    I just found out I have Hashimoto. Therefore, I am looking for support in understanding it all.
  • SummerSkier
    SummerSkier Posts: 3,400 Member
    hmm - I have hashi also. That sounds a little backward from my instance. Are you on synthroid? Typically synthroid speeds up your thyroid and makes you more active. If you lost weight before medication that would seem like your thyroid was too active so maybe your medication is to slow it down? Thyroid stuff can be confusing. My hashi is pretty stable. I only increased my dosage after about 10 years but just a smidge last year. There is a group here for thyroid information also. I had no trouble losing weight with MFP last year (about 30#) by counting calories. And my dosage oddly increased just about the time I began (coincidence or not who knows it was a small increase).
  • FL_Hiker
    FL_Hiker Posts: 919 Member
    Hi there,
    I've had hashimotos hypothyroidism since I was a child, it was diagnosed when I was 10 years old and I am female. The most important thing if you are not doing it already is to get with a specialist so you can get your medications under control. Many people like myself struggle with the generic brand levo. But feel much better on the brand name Synthroid. I also now take T4+T3 which is Synthroid and another medication called cytomel. The active form helps give me an energy boost in the morning! I've handled my weight just fine all my life with eating as healthy as I can , I eat protein, carbs, fats and try my best to eat as many fruits and veggies as I can but if you are working on weight loss remember CICO. On top of that I've found moderate exercise makes me feel much better too! It's far from a death sentence , and once you get your levels stable you won't even notice the condition anymore hopefully. The only thing that still bugs me is I'm always cold. Hope you start feeling better soon!
  • CMNVA
    CMNVA Posts: 733 Member
    I don't have Hashimoto's but I don't have a thyroid gland either due to having it removed over 20 years ago.

    Since you've been on the thyroid medication (which I am going to assume is some form of levothyroxine) have you had your thyroid levels checked? Your ravenous hunger is a sign that you are overmedicated and may be HYPERthyroid now. You'd think that would cause you to lose weight, but according to my endocrinologist, it rarely does. Most people tend to OUT EAT their revved up metabolism. The only people who generally lose weight are those with severe Grave's Disease (autoimmune hyperthyroidism) where they are much more hyper than you could get with a medication.
  • Psychgrrl
    Psychgrrl Posts: 3,167 Member
    You should have your blood taken every eight weeks while you’re trying to get your levels stable. They should test your TSH, Free T3, Free T4 at a minimum. Each test has a range of normal and you need to work with your doctor for what’s normal for you (I.e. no symptoms).

    Medications have the same ingredient, but the binders, fillers, coatings and coloring can differ by brand of generic. And sometimes folks react differently because of the stuff that’s with the medication. There are literally hundreds of generics out there. I was getting a different generic one each time I refilled my prescription and my tests were all over the place, in spite of me taking my meds at the same time each morning. My Endo figured it out. And then she made sure I got the same meds each time.

    Certain foods and medications can interfere with the absorption of your meds. Calcium and antiacids, specifically. So, hold off on the milk or creamer for at least an hour—four is better—after you take your meds. I stopped having cereal for breakfast on the advice of my doc. Take any antiacids (I was on omoeprazole) as far away as you can if possible.

  • glittersupernova
    glittersupernova Posts: 90 Member
    I was diagnosed with Hashimoto’s this year in June after years of worsening symptoms. I am now on a highly restrictive diet but make sure it is balanced and nutritious. It is nice to know there are others on here who are navigating this path with me.

    I am currently in the phase of trying to find the right medication dose. My most recent dose was too strong and now I am slowly recovering from the effects of that.

    Sending my thoughts to you all!
  • PLoveElliott
    PLoveElliott Posts: 114 Member
    I was just diagnosed with Hashi’s last year. Feel free to add me and we can try and support each other.
  • size102b
    size102b Posts: 1,370 Member
    My mum has this I’m being tested next week is it genetic ?
  • Sharon_C
    Sharon_C Posts: 2,133 Member
    I don't have Hashimoto's but I also don't have a thyroid and for the first week after my thyroid was removed I was RAVENOUS so I understand what kind of hunger you're talking about. I just kept telling myself that I know how many calories my body needs and that it is getting sufficient calories. That the hunger is because of the medication, NOT because my body is truly hungry. That helped some. My hunger only lasted a week until my meds leveled out.

    I have no other advice other than I understand the hunger issue.
  • CSARdiver
    CSARdiver Posts: 6,256 Member
    size102b wrote: »
    My mum has this I’m being tested next week is it genetic ?

    There is a very small correlative element to this - nothing causative or provable at this point.
  • Crafty_camper123
    Crafty_camper123 Posts: 1,440 Member
    edited January 2019
    size102b wrote: »
    My mum has this I’m being tested next week is it genetic ?

    Anecdotal expirience here: It's worth keeping an eye out for the symptoms. It seems to run in some families, but not in others. In my family it seems to run strong on my mom's side. My maternal grandmother had it, my mom has it, my cousin has it, and I was just diagnosed last month. I figure the earlier you can catch it, the better. So just keep an eye out, and if you think something is off, let your doctor know your mom has it, and have them run a panel.

    Edit: fixed quotes
  • snickerscharlie
    snickerscharlie Posts: 8,582 Member
    size102b wrote: »
    My mum has this I’m being tested next week is it genetic ?

    Anecdotal expirience here: It's worth keeping an eye out for the symptoms. It seems to run in some families, but not in others. In my family it seems to run strong on my mom's side. My maternal grandmother had it, my mom has it, my cousin has it, and I was just diagnosed last month. I figure the earlier you can catch it, the better. So just keep an eye out, and if you think something is off, let your doctor know your mom has it, and have them run a panel.

    Edit: fixed quotes

    My experience is similar, for what it's worth. My mom, my sister, my aunt (on my mom's side), 3 cousins and myself all have hypothyroidism. I'm the only one with Hashimoto's, though.
  • pinaycoco
    pinaycoco Posts: 63 Member
    marquel622 wrote: »
    I've been living with this disease for about 5 years now and still don't quite have the meds right. Prior to diagnosis, I was the thinnest I have ever been - 136 lbs, 5'7. Since starting the meds, I have gained 30 lbs. I can eat perfectly for a week, loose 2 lbs and have once cheat day and gain it back plus 2. I consistently work out 3-5 days a week, running, elliptical or weights. Initially part if the problem after being put on meds was I was starving ALL THE TIME. I could eat a huge meal and 10 minutes later I was starving again. Not hungry but ravenously hungry. I worked with a trainer and nutritionist and we did a 2 week reset that kind of got that back under control and I am not constantly fighting the need to eat, but I am just stuck. I can't seem to loose weight and keep it off. I am going to give myfitness pal another shot, really try and stick to it and see what happens, but I am wondering if anyone else struggles with Hashimoto's and what has worked. Thanks.

    I also have Hashimoto's. I lost 10kg last year but gained 4kg back as my Hashimoto's got worse. I would love to add you! We can do this!
  • pinaycoco
    pinaycoco Posts: 63 Member
    SCoil123 wrote: »
    Eating similar to paleo style helped reduce my hashimotos flares but I struggle to stay on such a restrictive eating plan. My hashis is usually well managed now but the first few years my levels were all over the place - I would balloon up 20lb then without changing anything drop a bunch of weight. It was frustrating. For three years while we built my treatment plan I kept a closet full of sizes 6-12 because I never knew what would fit the next day

    The reason I mentioned the diet was because for me when symptoms flare up they come with a lot of inflammation and water retention which can cause me to jump 1-2 pant sizes overnight. The special diet helped stop this and improved my joint pain and energy levels

    I have a similar experience with Hashimoto's. I would love to add you! We can do this!
  • LKArgh
    LKArgh Posts: 5,173 Member
    edited August 2019
    size102b wrote: »
    My mum has this I’m being tested next week is it genetic ?

    Yes. It is in an autoimmune disease and these run in families. It puts you at higher risk for the same illness or something else in the general family. It does not mean you will have it, but it increases the risks. So far, one of my 3 kids only has inherited it from me, chances are the others are clear, since we have tested for antibodies and they should have been detected in puberty.
  • AlisaRN
    AlisaRN Posts: 65 Member
    Definitely find an endocrinologist that will work with you! I had to go through 3-4 doctor's before I found one that would listen to me and give me the right synthroid dose for my hashimotos. In the process I had three pregnancies, thyroid cancer, and a total thyroidectomy. I ended up with 33 lbs to lose and have lost 10 of them so far! It is so important to find a doctor that will work with you and get your synthroid dose right. It does take 6-8 weeks for your body to adjust to the meds. I have mine about right now and am just trying to stick with my calories, weighing food, and trusting the process.