New Hashie

I am newly diagnosed with hashimotos after 3-4 years of having terrible stomach issues, weight gain with no cause/cure, general feeling like crap and looking like crap. I'm about 1 mo on synthroid along with diet changes. In the last few years I've tried everything, no gluten, corn, alcohol, sugar, soy, peanuts, dairy, eggs, all that made me feel better at the start and eventually leaving back off again at some point. I've also found myself craving sweets, which I never cared for before, and also salty foods, which I've always loved. Low carb diets, low calorie diets, balanced diets, adding veggies and fiber, all have just been ok, and none resulted in any weight lost. The best scenario was slowing weight gain. I am reading the hashimotos protocol at the moment and am feeling encouraged by it and what I'm reading here. I found this site after a google search of mucin which I read about in the book. It was a revelation! I've been looking for a way to describe my weight gain, as I'm up 10-12kg but as I'm a small person, no one finds it alarming aside from me, who have never felt like this before. For years I've had doctors say I wasn't fat enough to be sick, all labs were ok, maybe I should diet and exercise more. I have been eating healthy since my 20's as stomach issues demanded. I've had similar incidents in the past of feeling like I was "swollen " or puffy from eating certain things but never this on going. Alcohol and fruits made me feel this way before, but obviously cutting them out stopped all that. I am now on supplements recommended by dr Wentz alone with my thyroid meds and exclusion diet/exercise. My digestion is improved, less constipation and gas/bloating but the mucin/cellulite/weight remain unchanged. I know it's a slow process and I have to wait for results but I am impatient and have a hard time sitting back and waiting. I guess my point for writing this is to introduce myself, thank you all for sharing here and say if anyone has any advice, words of wisdom or support I could really use it. Also any tips for testing/supplementing are welcome. I am considering going to a hashimotos specialist but I don't know if a naturopathic/integrative doctor would be helpful or not at this stage. My endo said no diet changes were necessary so maybe I do need some assistance. Is acupuncture a better bet? What about lymphatic massage? It's all so overwhelming and I don't know where to go from here. No one else really gets what I'm going through and I feel like people think I'm fine and should just cut calories and exercise more if I really want results. Finding out this wasn't all in my head has been somewhat comforting but I don't want to spend another 4years Feeling and looking as I have and am ready to find some root causes and work towards wellness. Thanks in advance and I appreciate you reading this far.

Lindsey

24 Replies

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  • Firstly it seems your in the USA where getting a prescription for Armour Thyroid should be much easier than here in the UK

    For many patients synthyroid or levothyroxine as its called here does not resolve the problems

    Since both gluten and lactose are often triggers in Hashimotos they are best strictly avoided for at least 3 months to see if they stop the antibody attacks

    I do not know enough to comment on Wentz protocol or finding Integrative medics thay are very thin on the ground here

  • hi reallyfedup123

    do you mean caseine in diary will cause antibidies to raise or lactose?

    NDT has a small amount of lactose in it ? !

  • unless your lactose intolerant NDT should be fine

    its dairy that may need to be avoided in Hashis but gluten is the more common thing that triggers antibodies

  • Thanks for the info, I'll ask about armour thyroid at my next followup

  • I am so sorry about your distress but you have come to the right place for help. I have been through much of the same but in UK. Help here is not really available on our so called glorious NHS!

    I have given up on the synthetic treatment having put on so much weight. I now self treat by paying for blood tests and taking Nature Throid taking it very low and slow. You may find that you can get this prescribed ( it is produced by RLS in the States after all). I started in October 16 and have lost weight by eating normally and gentle exercise. Rate of 1/2 a week. Now -10lbs. Still have mucin patches but am optimistic. Feel normal now. Go for it.

    Very best wishes - you will get better.

    Janveron

  • It is RLC labs for both Naturet-hroid and WP Thyroid

    rlclabs.com/

  • I'm glad it has worked so well for you.

  • @janveron please could you msg me as to where or how you get naturethroid in the UK??

  • Welcome to our forum and glad you have found some information which is important. It's a pity doctors know little but to use the TSH alone whilst ignoring clinical symptoms they don't know anything about. Mind you there are more than 300 :)

    First thing to do is get a new blood test. It should be the very earliest possible, fasting (you can drink water) and allow 24 hours between last dose of Synthroid and the test and take afterwards. TSH, T4, T3, Free T4, Free T3. If you've not had them recently you can put them on a new post.

    I shall give you a couple of links which may be helpful. Adding some T3 to your T4 (synthroid - in uk we say levothyroxine) might be very helpful. Synthroid is T4 only. It has to covert to T3. T3 is the only active hormone needed in our billions of receptor cells and we need to have an optimum in order for us to function without symptoms and to feel well.

    NDT (natural Dessicated Thyroid Hormones) is also available and it contains all of the hormones a healthy gland would produce, i.e. T4, T3, T2, T1 and Calcitonin. There are several available.

    You also have some good sites in the USA and I'll give you some links.

    stopthethyroidmadness.com/

    hypothyroidmom.com/

    Although they don't have a forum such as this one :)

    web.archive.org/web/2010103... this site is now archived as Dr Lowe died.

  • Thanks I'll look into this!

  • Dr Datis Khazzarian has brilliant easy to understand books for Hashimotos. The autoimmune protocol by Izabella Wentz was very interesting and had some great talks by specialists. Just make sure the supplements are right for you as at the end of the day she wants to make money as is selling her protocol. She definitely wants to help and has fab info just don't be sucked in to everything.

    Eliminating gluten and casein (in milk) can really help so get inflammation and antibodies under control. Both gluten and casein look like the thyroid to the body (molecular mimmickry learnt from Dr Wentz talks) so when ingested and leak into the bloodstream your T cells are sent to attack but then also attack your thyroid.

    Then finding your other food sensitivities like you have been doing.

    Alcohol, you're right is not good😩

    The nightshades for me are a problem, potato, tomato, eggplant...

    Research leaky gut. Chris Kresser website.

    thyroid U.K.!

    Susan Blum The Immune System Recovery Plan is good. Really helpful with diet. Highly recommend.

    Get your Folate Feretin B12and Vit D checked all could be low as run hand in hand with Hashimotos and will be making you feel awful.

    Magnesium too if you have sleep difficulties.

    B12 needs to be over 600 (your GP won't tell you that) under 500 can cause neurological damage.

    Vit D around 60.

    If you're craving sweet/salty foods get your adrenals tested.High/low Cortisol can cause a lot of problems.

    Have you thought about Natural Dessicated Thyroid? If just taking T4 you might not be converting to T3 and that's the active hormone, five times more active than T4 so if you're not converting you won't feel better without it.

  • I agree Kris Kresser is an awesome resource!! I also really like the blog tiredthyroid.com. Be patient it takes time to heal and get better.

  • Great info, thanks!

  • Hi linzd, I was diagnosed hashimotos almost 2 years ago. I felt like crap, had a big bald patch 3x3.5 inches and could not shift excess weight.

    Now I feel much better, weigh a normal weight, take lots of supplements, regular exercise and work full time. I take synthoid (levothyroxine). It has worked well for me but it took me a while to get it right. I'm also gluten free and caffeine free. Just wanted to let you know that synthoid does work for some of us.

    Hope you start to feel better soon.

  • Thanks, it means a lot!

  • Firstly always remember you are not alone in this struggle. The journey you describe is sadly too common. Diet is key, as is stress management and sleep quality.

    Vitamin D is crucial in hormone production so test it as soon as possible. A great brand is natures own who make a liquid form, speak to your doc about taking large doses initially.

    Reducing Inflammation is key, and diet, sleep, stress relief help, stick to walking rather than excessive cardio which can be inflammatory Avoid inflammatory foods, gluten dairy already mentioned but night shades are huge too so look at them.

    Consider NAC by solgar as it's a precursor to glutathione which is one of the bodies biggest anti oxidants

    Also test for ebstein bar virus, associated commonly with autoimmunity. Once you have it, it lies dormant until triggered with things like stress and certain foods. Symptoms are fatigue and swelling of glands under chin.

    It's a journey and you are on the right path :)

    Dania

  • Thanks! I have felt so alone the last few years before diagnosis, as much as I hate how common this is it feels good to know others have gotten better and one day I will too!

  • Hi Linzd

    Poor you, if any consolation we are in the same boat

    I am sure there are a lot of guys here with really good advice on testing and vitamins etc - right vits are essential

    I could recommend Dr Axe - healing your gut - please google to find him

    also useful "How to restore thyroid to batural health" naturalendocrinesolutions.com

    I found these very useful

    I am nowhere near being really well, still trying

    I also had an intolerance test to see what exact foods I need to avoid - and that helped a lot

    Good luck!

  • Thanks for the link. I have signed up, I'm desperate now. Been told I have Hashimotos but I believe 18 months ago I had Graves but the anti depressants I was put on (even though I kept saying I wasn't depressed) has masked that and am now slightly hypo. I tried a very small dose of NDT but reacted badly and the consensus was adrenals problem. I did a cortisol test on Monday and it came back bad sample. So will have to wait and send away for the saliva test instead. Can you tell me how Hashimotos and Graves are distinguishable with blood tests. The peroxidase test was hundreds over and the other antibody test a fraction down but top of the range.

  • Thanks for the link!

  • It's good that you've found out about mucin, already. So, do you think that that is your problem? If so, then all the dieting and exercising in the world isn't going to get rid of it. In fact, could make it worse, because low calorie diets and exercise lower your T3, making you more hypo. And, it is low T3 causing the problem in the first place.

    So, as others have said, you need to know a) your FT3 level and b) how well you are converting T4 (synthroid) to T3.

    If you aren't converting well, adding more T4 is not the right answer. You need to take T3.

    If you are converting very badly, NDT won't be the answer, either, because there is very little T3 compared to T4 in NDT, and you would have to take a lot to get enough T3, which would mean a lot of unconverted T4 in your system, which causes its own problems.

    For good conversion, you need optimal nutrients. Never mind what Dr Wentz recommends, some things shouldn't be taken without testing first. So, we always recommend testing vit D, vit B12, folate and ferritin first, and supplementing accordingly - we're here to help with that.

    Things you can take without testing are selenium (some say, I feel a bit iffy about that, and think it might be a good idea to get it tested, just to be on the safe side); magnesium (no point in testing); vit C (excess is excreted). Zinc is an iffy one, too. Most hypos are deficient in zinc, but if you have any doubts, do get tested.

    But, lay off the diets and exercise until you know exactly where you are! OK? :)

  • Thanks for the info. The manifestation of Hashimotos is so different person to person it's hard to navigate all the information out there. I'm trying to really listen to my body and give it what it needs to heal. I appreciate your advice and feel armed with knowledge and questions for my follow up appointment.

  • So I've had Hashimoto's for over 30 years and this is the first time I've heard anything about something called mucin. I'm doing well on diets such as gluten-free and dairy free and I do fairly well on NatureThroid. I have almost given up on ever returning to my former weight - or losing more than five or 10 pounds . So it sounds like I need to learn more about this mucin thing I looked it up but I don't get the connection to Hashimoto's I have the book from Dr. Wentz but I haven't read that part yet . The book I have is entitled Hashimoto's protocol . Would love to hear more about what other people have learned about this mucin thing - and how it's connected to Hashimoto's .

  • It was on pg 79-80 of her book, She says: "Note: Myexedema: mucin and edema. Mucin is a substance that accumulates in hypothyroidism." myexedema I have researched before as I felt my weight gain wasn't really fat because it feels harder and not squishy like when I've gained weight in the past. But that search didn't help me much, as it seemed to be more localized and extreme than what I have. My endo and other docs have also dismissed this as possible, saying I've gained weight and with diet and exercise it will come off and I will level off eventually... Very frustrating and so finding here it is real has been reassuring, it is very hard to fix something when you don't know what's broken.

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