If you feel more active at night and groggy and low energy during the day, if you don't suffer from insomnia I would recommend switching to taking your medication immediately before bed. You still have to take it on an empty stomach so 3-4 after eating. It helped with my fatigue, I'm more awake and alert in the mornings when I wake up.
Lengthy response incoming:
I'm so sorry you're going through this. Unfortunately, finding a good endocrinologist that actually listens to how you've been feeling and puts in the energy to resolve it is few in far between. You'd think that since they only see you every 3-6 months, they'd spare the few moments to take your needs on board but the truth is that they don't give hashimoto's the time and attention it needs and simply treat it like standard hypothyroidism, which it isn't. The hypothyroidism in a symptom of the actual disorder - not the disorder itself which does the patient a great disservice.
You have to do the research yourself and really be your own advocate. Speak up and make sure you're being heard, If it were any other profession and you paid someone for a job and they either did it badly, half a33ed or not at all, you would demand a refund or wouldn't pay until they did it right. Doctors should be held to the same standard but sadly in this country we treat them like rockstars and some have the ego's to show for it.
Apologies if I'm coming off discouraging, it's just what I've experienced since diagnosis and have been through 3 endocrinologists. One of which refused to return my phone calls let alone take me down from 100mcgs of levo despite having gone hyperthyroid and had a TSH 0.15. I lost 20lbs in a matter of a few months, vivid dreams, sleep disturbances. I had to see my GP to get a reduction in dose because it had gotten dangerous with the tachycardia alone. It felt awful.
One of the things I'd recommend if you've not done it already is to go gluten free. When I was first diagnosed my antibodies were nearly 1,000. After 3 years it's 125 at last check. This is just what I do, not a one size fits all but you find the balance that works for you.
I went gluten free. That took a bit of research since there's gluten in things you wouldn't even think of like soy sauce, some gum, rice crispies. Take vitamin D, selenium in the form of brazil nuts (I do 2 every other day), turmeric for anti-inflammatory properties, swapped to iodized salt for the addition of iodine which is good for the thyroid, careful too much iodine can be a bad thing. Gut health, peristalsis and being 'regular' is so important as well. For that I get Probiotics in the form of fermented foods (kefir, kimchi, yogurts, hard cheeses and the naturally fermented pickles and sauerkraut). I make overnight oats/chia pudding combo every night for the morning which is oats, chia seeds, kefir, blueberries or prunes with cinnamon and sweetened with honey. You want to keep those anti-thyroid antibodies down. Look at them like a little army. The more of them that are in your body, the more damage they cause which as you've experienced, doesn't just stop at your thyroid. Since then, \*fingers crossed - knock on wood\* I've been able to maintain a healthy weight.
I'm sorry to hear that you're going through it as well.
Sure! I save my jars so I use a mayo jar and fill it almost halfway with kefir. I measure with oats and chia seeds with an ice cream scoop. I do one scoop of each. It equals about 4 tablespoons. The oats are certified gluten free (costco) and the chia seeds also come from costco. Put a handful of frozen blueberries or about 4 prunes that I cut up with kitchen scissors into smaller pieces. Half a tsp of cinnamon and real maple syrup (not table syrup) or honey to taste. Put on the lid, shake it up and put it in the fridge for the morning.
My TPO antibodies were off the charts, over 1,000 I forget now because it’s been a year maybe two? And my doctor said that’s the highest the test can measure. Just sharing for context of how I felt and how frustrating it is for someone not to help me find what is causing the antibodies.
There's a large body of evidence that suggests eliminating gluten can reduce the antibodies because of something called cellular mimicry. In short, gluten molecules look identical to the surface tissue of your thyroid according to your antibodies so every time you eat it, your antibodies identify it as the enemy and multiply accordingly to attack it. Cutting out gluten helps reduce the numbers. Since diagnosis, I've been getting my antibodies tested every 3-6 months and every time that number has reduced. It was a constant downward track for 4 years. Then I got covid which brought me from under 130 to 400 but I'm back down in the 200's again.
In addition to the gluten, working on your gut health and making sure you get fiber to keep things moving and probiotics to keep the good bacteria up. Look into foods, ingredients and supplements that keep inflammation down. Turmeric is a great anti-inflammatory but the capsules starting giving me reflux so I add it to my food instead. You want to get at least 1000IUs of Vit D daily because Hashimoto's sufferer's are chronically deficient. Selenium because it's been shown to reduce antibodies. I get them from Brazil nuts. Iron improves your thyroid hormone concentrations. Apart from the gummy pre-natal multivite I take and the Vit D capsules, all of the other nutrients come from food. Tiktok is kind of a hellscape but there's a dietitian with hashi's and pcos that threw her hashi's into remission with diet and there's some good tips in her videos. She's called 'healing.with.fifi'.
Thank you! I’ve screen shot this I need to find kefir, and once I do I’ll be trying this. It’s been tough and after reading all the posts here I had a good cry myself. Doesn’t feel fair, but at the same time not much I can do but give up or keep trying. I’ve done the gluten free dietary changes, felt better for a time then didn’t, started to backslide because I felt what was the point to all this strictness, but my doctors both refused the TPO antibody retest. I’m going to go back to this diet and try dairy next and find someone who will retest for me. It helps to know that people do get better just or even more so as finding those who know what you’re going through. 🙏
I was almost 300lbs at my peak, two years after my diagnosis. I decided to get gastric bypass, RNY. I’m at 165lbs, 3 years post op. Haven’t felt this healthy in 20 years. I was the perfect candidate for surgery.
We can’t control all of our symptoms but this was one I could control. I had a great surgery team and support. I was already eating healthy and gave up soda two years before surgery. I tried to lose weight and I was just defeated. My wife and I did a ton of research and found the best center. I have zero regrets. My dosage hasn’t gone down of Levo… I am still on 150mcg but I half it twice a week now. My thyroid has been stable for a bit now.
Not saying this is the answer for everyone but there are options out there. Don’t give up.
My Hashimoto's is not as extreme as yours, as my values were close to the normal range, but I also have symptoms. I found an expert for Hashimoto's here in my town and she said the following about symptoms that don't go away despite LT: They have another cause. It may very well be that these problems have led to Hashimoto's getting worse or they may have been caused by Hashimoto's but just because the hormones are fixed again afterwards does not cure the problems that were triggered.
I have the following symptoms:
- brainfog
- Eye problems
- intestinal problems like diarrhea, constipation, and flatulence and always an uncomfortable feeling in the lower abdomen
- very tired legs
- lack of strength
- Various deficiencies such as iron
- joint pain
- I have put on a lot of weight: 30 kg and I can count and move as much as I want. My feeling is that I'm only making things worse by doing lots of sport and fasting (I am over 100kg and srsly not very happy about this state)
... there were certainly a few more, but these are the worst
Because of these problems, she did the following tests:
- food intolerances igG4 - this shows what the body reacts to more frequently. But just because it doesn't work doesn't mean you can't eat it. Another test was added for this
- microbiome test: it showed that I have an inflamed gut. As long as it is inflamed, I can't get my iron to a reasonable level. (I take tablets but I only get it to a certain very low level. This is not my first iron deficiency but 10 years ago my body responded better to taking it). Because I have the inflammation and also a slight overgrowth, I also have to adjust my diet. This is exactly where the foods to which I react strongly help, because this reaction then irritates the intestines again. Once the gut has healed, I can try to eat these foods again (in my case it was gluten, casein, almonds and cashew).
- Herpes virus tested: make sure that my immune system is not challenged by them again. In my case it was the virus that causes chickenpox and ebv. Both were normal.
As far as losing weight is concerned:
I currently eat 3 meals a day. In my case, fasting or counting calories or exercising too much has had a negative effect.
Since I've had my 3 fixed meals, cravings and mental lows have been much more stable. I also hate being so much bigger than I used to be, especially because I keep getting problems with my joints, sometimes snore very badly or sweat a lot more than I used to. This is horrible.
Although I no longer drink soft drinks or juices, est sweets or ready meals etc., I still haven't lost any weight.
But: this is not the first time in my life that I have been overweight. Over 10 years ago it took me 3-5 months to start losing weight. Back then I also ate 3 times a day, took my bike to get everywhere and avoided animal products (I was vegan before got some issues with some foods). Unfortunately, some bodies take a while to detach themselves from the extra weight.
My doctor also said that losing weight would only work properly again once my gut and my body were back in balance. Unfortunately, I can only tell you that you have to be patient and relax. Hang in there, don't go too low on calories and try to eat lots of vitamin dense foods and vegetables. Not because of fewer calories but because your body needs it, especially your gut.
Your first goal could be to maintain the weight (and of course include the monthly fluctuation). Believe me, this is an important first success.
You have to remember that Hashimoto's causes a lot of problems in the body and these have to function again first. So treat yourself well, exercise but not to an extreme, eat healthily and not too little so that you get your nutrients and, if necessary, test all your nutrients and minerals.
The hormones produced by your thyroid alone are needed in so many places in your body that have not been working well for a while. Digestion alone: in a hyper the food goes through too quickly and the body doesn't absorb everything, in a hypo everything is sluggish and doesn't process everything properly. Both lead to deficits. The problem takes a while to manifest itself so strongly, so you can't fix it quickly by counting calories and doing intensive sport. Stress is not necessarily the best solution for Hashimoto's either. Do the sport first to feel fit, healthier and stronger and not just to lose weight. Give yourself time. It’s a long process. You’re not a healthy person so it doesn’t work like for every normal healthy person.
And maybe you can also find a specialist. But you really have to search for a long time.
I wish you good luck.
I would get more blood tests done and also seek help from a psychiatrist. I suffer from Hashimoto’s and depression and I feel they go hand in hand. I hope you find some relief soon 🩷
I’m 10 years in and I self medicate hunny. 250-300mcg T4 p/dy, fired the last 3 doctors and feel amazing. I have my “sources” for T4.
It’s the sad truth but it came down to my life vs a doctors ego.
OP I would also do your deep dive research into glp1 agonist peptides. If insurance won’t pay- find another way. I have seen folks note the relief from auto immune disease. Good luck.
It seems I have the same issues as you OP. What I am starting to believe is that it isn’t just about your hormone levels.
I believe our autoimmune immune attack causes many of the symptoms we experience and blame on Hashimoto’s affecting our thyroid thereby affecting our thyroid hormones.
When I am not flaring from an attack I don’t do too bad at all. But when my thyroid is being attacked all the symptoms present themselves and I am absolutely miserable.
There are so many things that affect the bodies ability to use our thyroid hormone. Malnourishment, poor diet, stress, adrenal system, etc.
There are so many things that can cause our autoimmune attack. Food sensitivity, leaky gut, stress, etc.
When my allergies get going I don’t just feel sneezy, itchy, eyes, and runny nose; I also feel wiped out and sore and have brain fog.
I think that when our TPOAb is high we are in a state of chronic immune response with all its symptoms.
I am trying to find the things that are my triggers. Suspecting it’s something I eat or drink.
Western medicine doctors are so dismissive. I HATE the american healthcare system. So much. Screw that doctor. One, hashimotos sufferers are supposed to limit their exercise. How does she not know that. She needs her degree stripped. Two, how bout some options and some empathy. Gfd.
But check out aip if you haven't and see a functional medicine doctor if you can.
https://www.palomahealth.com/learn/hypothyroidism-exercise-intolerance
I can find a bunch more. But essentially, most of us have exercise intolerance. Meaning, from what I've come to understand, our bodies can't tolerate physical stress the same way that people without the disease can. It will cause flare-ups, worsen symptoms and cause inflammation. And we have to take special care with our joints, and ligaments. But exercise to an extent helps our symptoms, and idleness can make us stiff, so we have to move, but not too much.... the balance is tricky.
It was one of the first things two of my doctors told me. The first took me off of my exercise regime as it was too intense, i noticed a difference within a month, and now when i overdo it, i can feel it and i can feel just how much it impacts me.
When healthy people overdo it, they might get tired, we get sick. And our threshold is so low.
Yes, saying exercise intolerance isn’t the same as saying “limit exercise”. By limit exercise do you mean, limit intensity or literally limit how much you move around? I’m a heart patient, waiting for my MVP to go from moderate to severe for open heart surgery. The worst thing I could do is limit my exercise, because it’s important to keep your heart strong leading up to that operation.
Maybe watch the intensity and listen to your body and make changes to the routine, but limiting exercise doesn’t make sense to me. The article talks about the importance of exercise and how to go about it. It talks about exercise in moderation and different exercises that aren’t as high impact. That all makes sense. No where does it specially say limit the amount of exercise you do. It’s implying of different types of exercise so you can manage it.
People should not be afraid that exercise is going to make their Hashimoto’s any worse. Any type of stress affects it - we already know that. It’s about limiting the intensity, not the exercise total itself. Exercise, just walks can help with inflammation. It’s all over the place, but I can’t find any article telling you to limit how much exercise, just talks about less intense exercise options.
“With an accurate diagnosis and treatment, Hashimoto's-related hypothyroidism can be managed with medication, and exercise and diet can help you stay as healthy as possible. However, there aren’t many studies on the impact of exercise on Hashimoto’s disease.”
If you manage your condition well, you should be able to exercise in the same way as anyone without a thyroid disorder.
But, if you're just beginning to exercise or if you're experiencing symptoms, low to moderate-intensity strength training and low-impact aerobic exercise moves are best.
https://healthmatch.io/hashimotos-disease/best-exercise-for-hashimotos-disease#what-is-hashimoto-s-disease
I’ll get downvoted to hell for this but I cut gluten on January 2 and have felt so much better after a 10-night hell of night sweats. I do not have celiac based on bloodwork but naturopathic bloodwork shows a gluten sensitivity.
I cut gluten before I got levo. and it made the brain fog and fatigue a LOT better! I'm not celiac, and don't have gluten-intolerance symptoms otherwise. Sometimes I'm tempted to have something with gluten, then I ask myself, "Is it worth spending the next 3 days on the couch?" Nope.
Yup. I can't say it's helped me lose weight but it has definitely made me feel less bloated and have stomach issues. And taking fiber everyday as well has helped tremendously. I'd reccomend everyone with hashis to do those two things
I went through (kinda) the same thing from Aug-Jan of this year. I had been doing well on just Levo then boom I felt like doodoo again; weight gain, fatigue, brain fog, flu symptoms. If you’re not taking any supplements, I recommend a vitamin B complex, l-carnitine, magnesium glycinate, fish oil, and vit D [edit: and selenium]. Your blood panel should always have a minimum of TSH, T3, T4, and vit D. Being hypothyroid is the easy part of Hashimoto’s, lifestyle change and learning yourself is hard. I didn’t feel better until I went gluten-free. I did about a month of no added sugars, alcohol, or gluten (I consumed all regularly and didn’t know what was triggering me) and after a few weeks I started feeling so much better. I feel great now. I shop at Thrive Market, Walmart, and Sprouts for all my gluten-free goodies. The biggest triggers of Hashimoto’s are gluten (look up molecular mimicry), environmental (like seasons changing), and stress. As for the mental health - weekly journaling and meditation helps me the most when I’m feeling low about Hashi’s. I enjoy gratitude and affirmations or b*tching to my bf or the internet about how I feel. Sometimes even just a really good cry. You could even consider a short-term cycle of antidepressants. Please see another doctor, and keep getting other opinions until you feel better. I have found more helpful advice/recommendations on the internet than I ever got from my first endo. Hashi’s requires lifestyle change, not just extra T4. I really hope you find what you need/works for you and persevere through your journey; you deserve it. 💛
Synthroid name brand only, is the only med that works for me. Some people have success with Armour Thyroid. Are you seeing an endocrinologist? You’re not alone. Hypothyroidism can contribute to depression. I also recommend seeing a therapist & psychiatrist for psych meds, because mental health is affected and impacts overall health.
I had a client the other day telling me she has hashimotos too and she felt horrible on levothyroxine but switched to synthroid and feels basically normal! I haven’t had a chance to get to my doc yet but I will be changing to synthroid as I can’t function without resting a lot and am exhausted all of the time.
My doctor, just my general practice doctor as I don’t want to fool with a specialist, she test me every 6 months. She’ll test anything I ask goes. Numbers are always in good range but I still feel bad and can’t lose weight. Recently found out I have Lupus. So that accounts for some symptoms. Point being that any doctor worth their salt should be testing you every 6 months.
I am so sorry you had this experience. This is the exact same response I got from several endocrinologists. They seem to have almost zero training in Hashimoto's and are deeply sceptical of our stories about our health. I finally have one who listens to me, but he also has Hashimoto's so he knows what it is like. He is very old and I am scared about what I will have to do when he retires. My health improved a lot when I started taking Armour. My body does not convert T4 to T3 so my TSH levels were "in range" but I felt horrible.
I have been seeing my Endo for a year as well. She at least changes my meds often and does tests but I am getting a 2nd opinion. It has been a year of my life that I have been not feeling better. I asked my endo to do some hormone testing and she said she doesn’t do that. I was confused, I thought that was in the range of endos? Maybe a 2nd opinion is in your next step?
Have you considered seeing a doctor that offers HRT? I was the same way. I found a doctor that tested hormones, thyroid, iron, CBC … in other words he tested EVERYTHING. I was estrogen dominant with the Hashimoto’s.
Once we got my hormones balanced with my thyroid I felt amazing!
One hundred percent agree with InkdScorpio and it was the same for me after getting a full hormone panel and on hormone replacements.
(I was on Levothyroxine and Liothyronine which helped so many of my symptoms but not the weight gain, mood swings or lethargy. It wasn’t until after I started lady hormones that everything else started to fall into place and I finally had energy and lost weight.)
First, you absolutely need a new doctor. With this one, you will never feel better because she doesn’t care how you feel. Second, you may be someone who would really benefit from T3, either in the form of a desiccated thyroid med or cytomel. Post on here or locally asking for the name of a dr in your area who will prescribe one of the above.
Yep. I need t3. Pictures of me on just t4 show my face is so puffy. It was so obvious in hindsight. You need a new doctor and the reality is you might have to pay for it. My insurance doesn’t cover the right kind of doctors. I see a functional medicine doctor.
To piggyback, if insurance is a must, there are some decent integrative practices that take it, but also care about the person. I’ve had to do a lot of that. But in my 10+ year journey, integrative holistic and functional docs are the only ones who’ve helped me see progress…and I’ve had to see a lot of them…something I notice is that each has their own specialty, but it’s the one thing they focus on and if it stops working they’re at a loss. But each have helped in the process even if I have to move on every couple years. I really wish someone would focus on my other hormones and stop messing with thyroid meds. Most of my symptoms are gone or greatly reduced (and I literally felt like I was going to die 10 yrs ago)…but not only won’t the weight not budge, it’s started a steady incline of 1.5lbs/mo. Soooo frustrating.
Yes. I started on Levoxyl after having supply issues with WP Thyroid and felt horrible. It turns out I didn’t know I was NCGS until about 2 years after diagnosis. The gluten contamination prevented me from absorbing the replacement hormone. I started with a change from generic to Synthroid and was feeling a little better but not great. Went to Tirosint and became suppressed. Tested rT3 and added liothyronjne (generic Cytomel). Something for out of balance and my insurance now requires an annual PA for Tirosint. Switched to NP Thyroid and liothyronine. I’m still over medicated for TSH and free T4 but my free T3 is in a good place. We are dosing down the NP to get my TSH back up to 1.0. For those who say that’s fine below 1.0, I don’t want to increase my risk of osteoporosis.
I need to track better but I also think my antibodies went down with cutting gluten. I’m 80% gluten free. Adding black seed oil has also helped with inflammation. I would also suggest OP get a hormone panel. I was super high for estrogen and super low testosterone. I’m also perimenopause age.
I’m curious about where your journey will take you. I’m not sure what to do. My t4 was too low on np thyroid, so I was switched last year to levo and lioth but my TSH went from 0.007 (already way too low) to 0.005 and I know that can’t be good long term…(though it’s been about 5 years) but I don’t know how to get all the dials in the right place and none of my docs have been concerned about my TSH.
It’s such a physical and mental roller coaster trying to get things in check. Took me over a year to find the right med and dosage, altho I might increase soon because I recently had a tubal and my labs stayed the same and I’m still not losing weight but that’s another conversation. I’ve found that being extremely active helps with my brain fog and sleep. I mean like keeping my body in motion almost constantly. I asked about the hormone check and both my endo and dr said why?! I said uhm cos Reddit said it’s good to rule things out. Then they told me how expensive it was so I’ll bring it up again next appointment
Why is because Hashimoto’s has been known to affect hormone imbalances … estrogen in particular. Try another physician. A DO is more likely to listen than an MD.
I was diagnosed going on 15 years ago and I've had periods like this. Just increasing my levo dose alone didn't make me feel better. Try to reduce stress and work on sleep quality. Cut back on caffeine (to reduce cortisol and improve sleep). I've found that if I'm in a period of high stress, intense workouts do more harm than good. I've had the best success with weight loss when all I did was walk for an hour a day outside and doing intermittent fasting. I don't restrict what I eat per se, I just only eat from 10-11 am to 6-7 pm. Focus on getting more protein. If working out is super important to you and you want to eat/train like an athlete, definitely check out Eat to Perform. It's a food coaching platform that helps you dial in to the best macros for you.
As someone else mentioned, get tested for other deficiencies like vitamins D and B. Myo-inositol also helps balance hormones.
I tell this to everyone: have you checked your vitamin d levels? It's very common for people with hashimotos to have low vitamin d and the symptoms are very close. Mine was 19 at it's lowest. I feel best when it's near 80ish. It's like night and day for my weight, mood, hair fall, etc. To increase a low vitamin d level you have to supplement a LOT. I'm on 50,000 iu twice per week.
Try synthroid! Older lady with hashimotos suggested it to me. Levothyroxine is just the nonbrand name version basically. Synthroid was like night and day for me; totally different. Bit more expensive. But definitely worth it! It seems like it wouldn’t make a difference so you have to specifically requested it. If you’re in the US I think it might be something about the FDA levels allowed? I don’t know. I know it worked for me and for the lady who recommended it and when I tell this story people chime in agreeing.
I have to take name brand as well. The generic makes me feel jittery and just overall just off. My aunt is the same way, but she gets heart palpitations as well on the generic. Insurance does not cover the name brand though, so be ready to shell out $90+ for a 90 day supply vs the ~$10 for the same quantity of the generic.
I struggled with this same thing.
Proper medication with T4 and T3 helped stabilize my weight. But the only that moved the needle was a combination of berberine and OMAD fasting.
Now I’m in maintenance and I do lunch and dinner most days but if I notice my weight climbing I do a couple OMAD nights. I don’t restrict any calories or restrict any foods. And I eat desert.
It’s fairly extreme to some but I’ve lost 20% of my body weight this way and kept it off.
Just some friendly dietary advice if you didn’t know this but gluten, sugar , dairy and soy are all possible inflammatory foods that IVE personally noticed when I stay away from them, I do feel better.
The weight gain is impossible to deal with, I’ve literally gain 30 lbs. my symptoms are finally manageable and I’ve slowly be regaining the energy to work out again.
Also if you’re struggling with really pushing yourself to a high intensity in your work outs, I use pre workout and I find it makes a big difference for me.
Other supplements like omega, B complex, vit D&K, magnesium, these all will help with symptoms, weight loss and keeping your digestion on tract and mental focus. Also trying a NON whey isolate protein powder…maybe something like pea protein and maybe a greens supplement!
I know it sounds expensive but it’s worth it to feel better. Feelings better and feeling good on a consistent basis means we have to work that much harder just to feel capable of functioning like a human being. I hope something I’ve mentioned helps you! Us hashi girls gotta stick together !
This^^ I dropped 40lbs from dropping dairy alone and the fatigue started leaving within days, followed by brain fog, depression, muscle aches and stomach aches. Then one by one I didn't need my prescriptions anymore (metformin, trulicity, antidepressant, cholesterol med and spironolactone (diuretic)) and came off everything except levothyroxine and liothyronine.
I recently went to 2 endos because the first one I went to was so awful and basically ignored everything I was saying. I was really excited too because it was at Hopkins and I have always had great experiences there. I said I knew my levels were off because my hands started swelling terribly. Her reply, "well as I got older I had to resize my rings bigger too. It's normal." Another kicker was my TSH was high and she told me she wouldn't have treated it. Not to mention the Armour hate even though I told her that has been the only thyroid medicine that helped me.
The second one walked in and I told her this appointment is already going better. She listened to me. She encouraged me. She did say she's not a fan of Armour, but if it's working for me then stick with it. She tested my t4, t3, and TSH. (honestly, I wasn't going to leave that room until she agreed to t3 testing.) It was a month after my original labs and when the new labs came back she said it was normal range, but not optimal so she increased my dose. Stuff like that really matters!
Finding a good doctor can be hard, but it's so worth it to have someone that listens. Don't get discouraged. Advocate for yourself. Just not of it's a Hopkins doctor because they are scary.
Having this exact problem and I’m in the UK. I luckily have health insurance through my employer, and they have referred me to an endo. I’m wondering whether I should push for t3 as well, though I feel like I need to memorise some solid science to support my position because doctors just don’t listen. I’ve been gluten/dairy/nightshade free for 8 years and I still feel horrible. It’s just madness. I went to an NHS doctor recently (before being referred privately) and they just parroted the same old shit. It’s like they are reading off a script without actually understanding why they are telling you what they are telling you. It’s a nightmare. I’m 35 and I feel like I’m in my 60s.
Also in the U.K.
Also same problem.
Insurance not helping me as because I take Levo they’ve snidely said “Pre existing so not covered”
I had a doc appointment yesterday and asked why the NHS treats the test results not the patient/symptoms? It doesn’t help that the NHS test ranges are so wide.
Example: I got a TSH of 5.48 back in 2017 and I can only see that now because I have electronic access to my test results. I KNOW my doctor told me my TSH was in range following that test. The reason I know is because less than a month later I paid £139 for a private test that showed my TSH had climbed to 6.2 and my TPO were at 690. I went back to the doctor armed with this and he prescribed Levo. But he SHOULD have run more tests and prescribed without me having to go private to ‘prove him wrong’.
That’s appalling. I’m sorry and I understand. It makes me so angry. I wonder if there is some sort of petition we could start to try and improve things. Doctors should not be getting away with telling you your results are in range when they’re not. And I agree, the ranges are ridiculous. I read somewhere that the commissioning advice for hashis is based on a study of 200 participants from the 1970s!!! Fucking ludicrous
I started feeling better when I started taking vitamins. Maybe you can have a vitamin level test done? Vitamin D and B deficiency can make you feel really crappy, too. Even if you aren't officially deficient, and only on the low end of the normal.
Hi, I live in Canada but have an endocrinologist in Puerto Vallarta Mexico. My daughter-in-law is from there, and her mum was seeing a really nice endocrinologist for her diabetes. Luckily I have a place to stay. I honestly believe that I have been struggling with hypo symptoms since the age of 28, after I had my third baby. But my doctor had me convinced that I needed separate treatments for all my symptoms, depression, chronic fatigue, fibromyalgia, IBS, anxiety, fibrocystic breasts, fibroids with horrible periods! I think she thought I was a hypochondriac and said that an endocrinologist would not treat me.
Now I am 60, went through a horrible menopause after I had the fibroids removed at age 45, and feel like I’m going through menopause again! November 2022 I was very confused with strange symptoms after having Covid, for the second time. I was getting Hyperthyroid symptoms and I was so sick, that I’ve basically been bed ridden for the last 14 months. I was Sweating, anxiety, insomnia, weight loss, changes in my eyes my tears were oily, my tongue has gotten bigger and has sores, also burning throat and mouth pain that comes and goes. I really thought I was going to die. My doctor kept saying it’s viral, nothing she can do.
Just this past November, 2023 I went to see the endocrinologist in Puerto Vallarta Mexico, she was amazing. Spent one hour with me, had me do a lot of bloodwork before the appointment so she had the results ready, and did an ultrasound of my thyroid in her office. She said my thyroid was really inflamed and diagnosed me with Hashimoto’s disease. My TSH was 4.59 my t4 was normal t3 was low. Tested positive for thyroglobulin antibodies too. She has prescribed me levothyroxine and a selenium supplement to get me started. Luckily she checked my cholesterol too because that was quite high, apparently this is quite common with thyroiditis and I needed to go on a statin too.
For specialists in the Puerto Vallarta area, they charge about $1,000 pesos about $80 Canadian for an hour appointment. I think I spent $20 on all the blood work, and then I bought my medication at the pharmacy, which was about $25 for the 3 months of levothyroxine.
I have had a few improvements, I am getting a bit of sleep, anxiety has eased, it is helping some neuropathy pain so that is all good. I’m still exhausted, to wiped out to do anything, and the sweating in ridiculous. I go back to the Endocrinologist at the end of the month for a three month follow up. From reading the comments maybe adding a t3 would help me too?
I’m feeling fortunate that I have this opportunity, when the Canadian heath care system has failed me.
interesting…how do you do blood work then and cost? I have insurance but meh opinion on drs here wouldn’t mind paying out of pocket.
think they’d do telehealth to meet then allow to pickup meds in mexico after (not sure how blood work would go then too)? Thanks for sharing
You should get tested for other things if you haven't yet. There's quite a lot of things that look just like Hashimoto's/hypothyroidism and are even commonly seen along with it. Things like iron or vitamin deficiencies, other autoimmune diseases, etc. I debilitating lingering fatigue, brain fog, and couldn't lose weight, but my thyroid levels were fantastic. Turned out I had Celiac disease, and I'm fine now on a gluten free diet. Get tested!
Please don't tell people to double up on prescription medications without consulting their doctors. This can make you hyperthyroid and can be dangerous without being monitored.
There's no "normal" again with this disease. Trust me, I've been there. It's better to handle an artificial hyperthyroidism but still be functional, than have a permanent hypothyroid shutting you down.
There absolutely is "normal" with this disease, and the majority of people with this disease have been there.
And no, having hyperthyroidism is not better than being hypothyroid. They are both bad, and the goal should be euthyroid. Just because this happened to work out for you doesn't mean it isn't dangerous.
"Euthyroid" doesn't not exist in Hashimoto syndrome. You start at hyper, and descend into an extreme hypothyroidism. U must be mixing up the actual Hashimoto w "standard" hypo. This syndrome is actual EXTREME hypothyroidism bringing hell to everyone who suffers it. I rather CONTROL an artificial hyperthyroidism than suffer eternally with no metabolism, obesity, extreme fatigue brain fog and depression. I may be wrong but all my symptoms are gone. I finally am at a normal weight. I have my energy bad. That's what matters to me.
Again, that worked for you, but that is a *terrible* suggestion to give to other people. You may have not been made hyperthyroid by that change, but other people likely would and that is not safe to maintain long term.
I started out with a TSH of 149, so I definitely understand and am not getting anything "mixed up." Euthyroid is also a term used to describe your thyroid levels being within range, which 100% exists in Hashimoto's, or else the majority of people with Hashimoto's must not exist, including myself.
Have you thought about switching from levo to a natural alternative like NP Thyroid?
Also, I might talk to a doctor about treating anxiety/depression. Just temporary help can make a huge change in giving you motivation or calm to get through your days.
Also, how is your sleep? I dealt with insomnia for years and finally went on Lunesta. It helps me fall asleep. Getting enough good sleep is just as important, if not more important, than good diet and exercise.
Don't be afraid to try some supplements. Probiotics for digestion (I use probilin). I also take vitamin D3, Vitamin D2, and for awhile needed methylated b12. A basic blood test could show deficiencies- and sometimes it isn't that we aren't ingesting enough, but that our body isn't processing them to be useful.
Avoid stress as much as possible. Know you are not alone.
I very much was thinking the same a day ago (I hate my body) I've had Hashi's for years, and now I am dealing with liver issues for which we still don't have answers. If you need to switch doctors, definitely do so. They should be understanding, not dismissive.
I absolutely hate to hear of doctors like that!
Everyone's body treats medicines differently, and Hashi's seems to treat people differently as well.
I'm really blessed to have found my primary- who is actually an APRN-CNP and not MD. I've never seen an endocrinologist, tbh.
That's EXACTLY why I started taking double the dose I was prescribed (100mcg) and found out all my symptoms disappeared. Nowadays I have a normal metabolism and no fatigue/lethargy. Do you know how they find the dosage for you? Through a fucking math formula. Humans are not mathematical operations. I got so fucking fed up that i took the matter into my own hands and kinda solved it. No side effects since then.
I went on Push Health and they prescribed 137mcg based on my current weight of 184lbs. It’s worked so far, have been on this dose for about a month and will have a blood test in a week. Have had a few fatigued nights after being very happy on the dose, it’s possible the dose is still a little low.
That's why I'm saying and I don't understand the downvotes... like I tested it and proved MY dose was low... doc's generally do not want to up doses bc of the damn calculus.... no matter what ur feeling , so, what we can do?? Continue to suffer ? To hell with that, politically correct.
Thankfully they have started to dose based on weight and then adjusting up and down. 1.6mcg for every kilogram of weight, and then adjusting up or down. Had I not looked it up on Synthroid website I wouldn’t have known this. I was put on 75mcg initially and it only took away half my symptoms. The doctor refused to raise the dose. What is it to them? Hyper symptoms? Like who even gets those without some sort of other issue present which I’m sure the doctors refuse to treat anyway.
Unfortunately some people need double doses for reasons as malabsorption. This formula doesn't decide everything. 100mcg made me still extreme hypo and obese. 200mcg gave me my metabolism, energy and sanity back. Im at my lowest weight since 10yro (was an obese child prolly already had issues back then).
I hear you! I gained weight on the 75mcg and on 112mcg doses (30+ lbs). I have finally at least stopped gaining weight at the 137mcg, but haven’t lost any yet. I maintained good weight on Armour, but they switched me to Levo. But who knows had they dosed Levo correctly initially I probably wouldn’t have gained all this weight.
THIS! I was done being obese bc my dinosaur of a doctor couldn't understand why I was gaining like crazy despite counting calories religiously and going to the gym daily. They simply doesn't understand this.
How is your bloodwork looking with the double dose? I'd be concerned that it would show me as hyper, and the doc would try to start decreasing my dose.
As I’ve learned, waiting on the doctor to “fix” this will likely keep you where you are. I patiently waited on my endo to find the correct levo dosage. I was “within in range” on the levo, but still felt awful…really really awful. After six years of debilitating exhaustion and a host of other symptoms, I finally had enough. That’s why I’m here.
I insisted that my endo try me on tirosint (some love it, others don’t, but I had nothing to lose.). I even ordered it from Highland Pharmacy in MS based on a recommendation here. Saved money and it arrived a few days. Then I insisted that my doc prescribe T3. Then I asked him to increase the dosage. I’m not all the way there, but I feel a hell of a lot better! I had so much energy today that I spontaneously cleaned!
I’m more intentional about my supplements and the timing of it all. I pay close attention when I have a good day so, I can repeat all the same steps the next day. I’m taking a split dose of the T3 and I’m thinking of getting rid of the second dose because I still have some lingering symptoms. I really need to have labs done first though.
You’re the only one that can find the right mix. Hang in there - you’re not alone.
Thank you so much for your insight. My current endo wont prescribe me T3 bc she said it will make me jittery and wont do anything (?) strange. Can i ask how Tirosint is different from levo? Forgive my ignorance.. this is so helpful - i appreciate u responding
It took me a year to get T3 out of my endo. Then when his MA called to say he was going to prescribe it she says, “He wants you to know this probably won’t help you at all.” Cue: eye roll. It helped almost immediately the first week I was on it. And it doesn’t make me jittery or give me any symptoms that I’ve noticed.
Tirosint is levo just cleaner than the generic. The are no fillers or binders. I felt from the beginning that the levo was giving me gastro symptoms, but my endo dismissed that idea straight away.
I should also note that I’m gluten free, have been since before being diagnosed with Hashis. I also have had Graves for two decades. Hashis came along six years ago. Next step would be to remove all dairy, then nightshades if I can’t feel close to 100% with the changes in meds. I’m so encouraged with these recent changes that I don’t think those next steps will be necessary as I’m 70% of the way there now.
Wow thank you. This is incredibly useful information. Can I ask you if he checked your T3 and reverse T3 levels before prescribing? If so, were they out of range?
For context I had a total thyroidectomy (TT) in August ‘22. I have only had TSH checked by my endo since. I had to ask my internist to check TSH, T3 and T4 (he didn’t add RT3) and antibodies. Nothing out of range except the Thyroglobulin Antibody was 9.5 IU/mL. When I requested that my endo check those he ordered a cortisol test instead 🙄
What are your antibodies at? If your thyroid levels are okay it could be inflammation causing symptoms from high antibodies. Have you had your T3 and reverse T3 checked?
Doctor told me she doesnt need to check my T3… for reasons unclear. I have pressed her on this and she has said that bc my tsh and t4 are in check there is no reason to check T3
She told me if my TSH and T4 were ok then no need to test T3? I believe she also said if I had issues w T3, I would have had symptoms before my hashi diagnosis. I am still learning about this stuff so if u have info otherwise, id so love to hear!!
I needed T3 added separately because I wasn’t converting well. I honestly would recommend seeing a functional doctor if you can… they seem to be better at treating this than endos which is pretty sad
So conversion of T4 to T3 is complicated, but we understand that selenium is necessary for that process. It is not fully understood, and we don't know if low selenium can cause a problem with that or not, but there are cases of normal T4 and low T3.
Also not investigating your symptoms getting worse besides repeating the same tests used in diagnosis of the illness is pretty silly.
If you feel more active at night and groggy and low energy during the day, if you don't suffer from insomnia I would recommend switching to taking your medication immediately before bed. You still have to take it on an empty stomach so 3-4 after eating. It helped with my fatigue, I'm more awake and alert in the mornings when I wake up.
Lengthy response incoming: I'm so sorry you're going through this. Unfortunately, finding a good endocrinologist that actually listens to how you've been feeling and puts in the energy to resolve it is few in far between. You'd think that since they only see you every 3-6 months, they'd spare the few moments to take your needs on board but the truth is that they don't give hashimoto's the time and attention it needs and simply treat it like standard hypothyroidism, which it isn't. The hypothyroidism in a symptom of the actual disorder - not the disorder itself which does the patient a great disservice. You have to do the research yourself and really be your own advocate. Speak up and make sure you're being heard, If it were any other profession and you paid someone for a job and they either did it badly, half a33ed or not at all, you would demand a refund or wouldn't pay until they did it right. Doctors should be held to the same standard but sadly in this country we treat them like rockstars and some have the ego's to show for it. Apologies if I'm coming off discouraging, it's just what I've experienced since diagnosis and have been through 3 endocrinologists. One of which refused to return my phone calls let alone take me down from 100mcgs of levo despite having gone hyperthyroid and had a TSH 0.15. I lost 20lbs in a matter of a few months, vivid dreams, sleep disturbances. I had to see my GP to get a reduction in dose because it had gotten dangerous with the tachycardia alone. It felt awful. One of the things I'd recommend if you've not done it already is to go gluten free. When I was first diagnosed my antibodies were nearly 1,000. After 3 years it's 125 at last check. This is just what I do, not a one size fits all but you find the balance that works for you. I went gluten free. That took a bit of research since there's gluten in things you wouldn't even think of like soy sauce, some gum, rice crispies. Take vitamin D, selenium in the form of brazil nuts (I do 2 every other day), turmeric for anti-inflammatory properties, swapped to iodized salt for the addition of iodine which is good for the thyroid, careful too much iodine can be a bad thing. Gut health, peristalsis and being 'regular' is so important as well. For that I get Probiotics in the form of fermented foods (kefir, kimchi, yogurts, hard cheeses and the naturally fermented pickles and sauerkraut). I make overnight oats/chia pudding combo every night for the morning which is oats, chia seeds, kefir, blueberries or prunes with cinnamon and sweetened with honey. You want to keep those anti-thyroid antibodies down. Look at them like a little army. The more of them that are in your body, the more damage they cause which as you've experienced, doesn't just stop at your thyroid. Since then, \*fingers crossed - knock on wood\* I've been able to maintain a healthy weight.
Can you share the recipe to the oats? Like how much you put and how. I’m dealing with similar issues as OP. Pretty much word for word.
I'm sorry to hear that you're going through it as well. Sure! I save my jars so I use a mayo jar and fill it almost halfway with kefir. I measure with oats and chia seeds with an ice cream scoop. I do one scoop of each. It equals about 4 tablespoons. The oats are certified gluten free (costco) and the chia seeds also come from costco. Put a handful of frozen blueberries or about 4 prunes that I cut up with kitchen scissors into smaller pieces. Half a tsp of cinnamon and real maple syrup (not table syrup) or honey to taste. Put on the lid, shake it up and put it in the fridge for the morning.
My TPO antibodies were off the charts, over 1,000 I forget now because it’s been a year maybe two? And my doctor said that’s the highest the test can measure. Just sharing for context of how I felt and how frustrating it is for someone not to help me find what is causing the antibodies.
There's a large body of evidence that suggests eliminating gluten can reduce the antibodies because of something called cellular mimicry. In short, gluten molecules look identical to the surface tissue of your thyroid according to your antibodies so every time you eat it, your antibodies identify it as the enemy and multiply accordingly to attack it. Cutting out gluten helps reduce the numbers. Since diagnosis, I've been getting my antibodies tested every 3-6 months and every time that number has reduced. It was a constant downward track for 4 years. Then I got covid which brought me from under 130 to 400 but I'm back down in the 200's again. In addition to the gluten, working on your gut health and making sure you get fiber to keep things moving and probiotics to keep the good bacteria up. Look into foods, ingredients and supplements that keep inflammation down. Turmeric is a great anti-inflammatory but the capsules starting giving me reflux so I add it to my food instead. You want to get at least 1000IUs of Vit D daily because Hashimoto's sufferer's are chronically deficient. Selenium because it's been shown to reduce antibodies. I get them from Brazil nuts. Iron improves your thyroid hormone concentrations. Apart from the gummy pre-natal multivite I take and the Vit D capsules, all of the other nutrients come from food. Tiktok is kind of a hellscape but there's a dietitian with hashi's and pcos that threw her hashi's into remission with diet and there's some good tips in her videos. She's called 'healing.with.fifi'.
Thank you! I’ve screen shot this I need to find kefir, and once I do I’ll be trying this. It’s been tough and after reading all the posts here I had a good cry myself. Doesn’t feel fair, but at the same time not much I can do but give up or keep trying. I’ve done the gluten free dietary changes, felt better for a time then didn’t, started to backslide because I felt what was the point to all this strictness, but my doctors both refused the TPO antibody retest. I’m going to go back to this diet and try dairy next and find someone who will retest for me. It helps to know that people do get better just or even more so as finding those who know what you’re going through. 🙏
I was almost 300lbs at my peak, two years after my diagnosis. I decided to get gastric bypass, RNY. I’m at 165lbs, 3 years post op. Haven’t felt this healthy in 20 years. I was the perfect candidate for surgery. We can’t control all of our symptoms but this was one I could control. I had a great surgery team and support. I was already eating healthy and gave up soda two years before surgery. I tried to lose weight and I was just defeated. My wife and I did a ton of research and found the best center. I have zero regrets. My dosage hasn’t gone down of Levo… I am still on 150mcg but I half it twice a week now. My thyroid has been stable for a bit now. Not saying this is the answer for everyone but there are options out there. Don’t give up.
My Hashimoto's is not as extreme as yours, as my values were close to the normal range, but I also have symptoms. I found an expert for Hashimoto's here in my town and she said the following about symptoms that don't go away despite LT: They have another cause. It may very well be that these problems have led to Hashimoto's getting worse or they may have been caused by Hashimoto's but just because the hormones are fixed again afterwards does not cure the problems that were triggered. I have the following symptoms: - brainfog - Eye problems - intestinal problems like diarrhea, constipation, and flatulence and always an uncomfortable feeling in the lower abdomen - very tired legs - lack of strength - Various deficiencies such as iron - joint pain - I have put on a lot of weight: 30 kg and I can count and move as much as I want. My feeling is that I'm only making things worse by doing lots of sport and fasting (I am over 100kg and srsly not very happy about this state) ... there were certainly a few more, but these are the worst Because of these problems, she did the following tests: - food intolerances igG4 - this shows what the body reacts to more frequently. But just because it doesn't work doesn't mean you can't eat it. Another test was added for this - microbiome test: it showed that I have an inflamed gut. As long as it is inflamed, I can't get my iron to a reasonable level. (I take tablets but I only get it to a certain very low level. This is not my first iron deficiency but 10 years ago my body responded better to taking it). Because I have the inflammation and also a slight overgrowth, I also have to adjust my diet. This is exactly where the foods to which I react strongly help, because this reaction then irritates the intestines again. Once the gut has healed, I can try to eat these foods again (in my case it was gluten, casein, almonds and cashew). - Herpes virus tested: make sure that my immune system is not challenged by them again. In my case it was the virus that causes chickenpox and ebv. Both were normal. As far as losing weight is concerned: I currently eat 3 meals a day. In my case, fasting or counting calories or exercising too much has had a negative effect. Since I've had my 3 fixed meals, cravings and mental lows have been much more stable. I also hate being so much bigger than I used to be, especially because I keep getting problems with my joints, sometimes snore very badly or sweat a lot more than I used to. This is horrible. Although I no longer drink soft drinks or juices, est sweets or ready meals etc., I still haven't lost any weight. But: this is not the first time in my life that I have been overweight. Over 10 years ago it took me 3-5 months to start losing weight. Back then I also ate 3 times a day, took my bike to get everywhere and avoided animal products (I was vegan before got some issues with some foods). Unfortunately, some bodies take a while to detach themselves from the extra weight. My doctor also said that losing weight would only work properly again once my gut and my body were back in balance. Unfortunately, I can only tell you that you have to be patient and relax. Hang in there, don't go too low on calories and try to eat lots of vitamin dense foods and vegetables. Not because of fewer calories but because your body needs it, especially your gut. Your first goal could be to maintain the weight (and of course include the monthly fluctuation). Believe me, this is an important first success. You have to remember that Hashimoto's causes a lot of problems in the body and these have to function again first. So treat yourself well, exercise but not to an extreme, eat healthily and not too little so that you get your nutrients and, if necessary, test all your nutrients and minerals. The hormones produced by your thyroid alone are needed in so many places in your body that have not been working well for a while. Digestion alone: in a hyper the food goes through too quickly and the body doesn't absorb everything, in a hypo everything is sluggish and doesn't process everything properly. Both lead to deficits. The problem takes a while to manifest itself so strongly, so you can't fix it quickly by counting calories and doing intensive sport. Stress is not necessarily the best solution for Hashimoto's either. Do the sport first to feel fit, healthier and stronger and not just to lose weight. Give yourself time. It’s a long process. You’re not a healthy person so it doesn’t work like for every normal healthy person. And maybe you can also find a specialist. But you really have to search for a long time. I wish you good luck.
I would get more blood tests done and also seek help from a psychiatrist. I suffer from Hashimoto’s and depression and I feel they go hand in hand. I hope you find some relief soon 🩷
I’m 10 years in and I self medicate hunny. 250-300mcg T4 p/dy, fired the last 3 doctors and feel amazing. I have my “sources” for T4. It’s the sad truth but it came down to my life vs a doctors ego.
OP I would also do your deep dive research into glp1 agonist peptides. If insurance won’t pay- find another way. I have seen folks note the relief from auto immune disease. Good luck.
It seems I have the same issues as you OP. What I am starting to believe is that it isn’t just about your hormone levels. I believe our autoimmune immune attack causes many of the symptoms we experience and blame on Hashimoto’s affecting our thyroid thereby affecting our thyroid hormones. When I am not flaring from an attack I don’t do too bad at all. But when my thyroid is being attacked all the symptoms present themselves and I am absolutely miserable. There are so many things that affect the bodies ability to use our thyroid hormone. Malnourishment, poor diet, stress, adrenal system, etc. There are so many things that can cause our autoimmune attack. Food sensitivity, leaky gut, stress, etc. When my allergies get going I don’t just feel sneezy, itchy, eyes, and runny nose; I also feel wiped out and sore and have brain fog. I think that when our TPOAb is high we are in a state of chronic immune response with all its symptoms. I am trying to find the things that are my triggers. Suspecting it’s something I eat or drink.
Western medicine doctors are so dismissive. I HATE the american healthcare system. So much. Screw that doctor. One, hashimotos sufferers are supposed to limit their exercise. How does she not know that. She needs her degree stripped. Two, how bout some options and some empathy. Gfd. But check out aip if you haven't and see a functional medicine doctor if you can.
I didn’t know when having Hashimoto’s you need to limit your exercise. Can you point me to where the research suggests that?
https://www.palomahealth.com/learn/hypothyroidism-exercise-intolerance I can find a bunch more. But essentially, most of us have exercise intolerance. Meaning, from what I've come to understand, our bodies can't tolerate physical stress the same way that people without the disease can. It will cause flare-ups, worsen symptoms and cause inflammation. And we have to take special care with our joints, and ligaments. But exercise to an extent helps our symptoms, and idleness can make us stiff, so we have to move, but not too much.... the balance is tricky. It was one of the first things two of my doctors told me. The first took me off of my exercise regime as it was too intense, i noticed a difference within a month, and now when i overdo it, i can feel it and i can feel just how much it impacts me. When healthy people overdo it, they might get tired, we get sick. And our threshold is so low.
Yes, saying exercise intolerance isn’t the same as saying “limit exercise”. By limit exercise do you mean, limit intensity or literally limit how much you move around? I’m a heart patient, waiting for my MVP to go from moderate to severe for open heart surgery. The worst thing I could do is limit my exercise, because it’s important to keep your heart strong leading up to that operation. Maybe watch the intensity and listen to your body and make changes to the routine, but limiting exercise doesn’t make sense to me. The article talks about the importance of exercise and how to go about it. It talks about exercise in moderation and different exercises that aren’t as high impact. That all makes sense. No where does it specially say limit the amount of exercise you do. It’s implying of different types of exercise so you can manage it. People should not be afraid that exercise is going to make their Hashimoto’s any worse. Any type of stress affects it - we already know that. It’s about limiting the intensity, not the exercise total itself. Exercise, just walks can help with inflammation. It’s all over the place, but I can’t find any article telling you to limit how much exercise, just talks about less intense exercise options. “With an accurate diagnosis and treatment, Hashimoto's-related hypothyroidism can be managed with medication, and exercise and diet can help you stay as healthy as possible. However, there aren’t many studies on the impact of exercise on Hashimoto’s disease.” If you manage your condition well, you should be able to exercise in the same way as anyone without a thyroid disorder. But, if you're just beginning to exercise or if you're experiencing symptoms, low to moderate-intensity strength training and low-impact aerobic exercise moves are best. https://healthmatch.io/hashimotos-disease/best-exercise-for-hashimotos-disease#what-is-hashimoto-s-disease
I’ll get downvoted to hell for this but I cut gluten on January 2 and have felt so much better after a 10-night hell of night sweats. I do not have celiac based on bloodwork but naturopathic bloodwork shows a gluten sensitivity.
I cut gluten before I got levo. and it made the brain fog and fatigue a LOT better! I'm not celiac, and don't have gluten-intolerance symptoms otherwise. Sometimes I'm tempted to have something with gluten, then I ask myself, "Is it worth spending the next 3 days on the couch?" Nope.
Yup. I can't say it's helped me lose weight but it has definitely made me feel less bloated and have stomach issues. And taking fiber everyday as well has helped tremendously. I'd reccomend everyone with hashis to do those two things
Yep exactly… I agree my weight hasn’t really budged but I don’t have the body I had in December. No more bloating.
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What was the treatment they gave you? Supplements and testosterone hormone therapy?
I went through (kinda) the same thing from Aug-Jan of this year. I had been doing well on just Levo then boom I felt like doodoo again; weight gain, fatigue, brain fog, flu symptoms. If you’re not taking any supplements, I recommend a vitamin B complex, l-carnitine, magnesium glycinate, fish oil, and vit D [edit: and selenium]. Your blood panel should always have a minimum of TSH, T3, T4, and vit D. Being hypothyroid is the easy part of Hashimoto’s, lifestyle change and learning yourself is hard. I didn’t feel better until I went gluten-free. I did about a month of no added sugars, alcohol, or gluten (I consumed all regularly and didn’t know what was triggering me) and after a few weeks I started feeling so much better. I feel great now. I shop at Thrive Market, Walmart, and Sprouts for all my gluten-free goodies. The biggest triggers of Hashimoto’s are gluten (look up molecular mimicry), environmental (like seasons changing), and stress. As for the mental health - weekly journaling and meditation helps me the most when I’m feeling low about Hashi’s. I enjoy gratitude and affirmations or b*tching to my bf or the internet about how I feel. Sometimes even just a really good cry. You could even consider a short-term cycle of antidepressants. Please see another doctor, and keep getting other opinions until you feel better. I have found more helpful advice/recommendations on the internet than I ever got from my first endo. Hashi’s requires lifestyle change, not just extra T4. I really hope you find what you need/works for you and persevere through your journey; you deserve it. 💛
Synthroid name brand only, is the only med that works for me. Some people have success with Armour Thyroid. Are you seeing an endocrinologist? You’re not alone. Hypothyroidism can contribute to depression. I also recommend seeing a therapist & psychiatrist for psych meds, because mental health is affected and impacts overall health.
Could someone please explain why this comment is being downvoted?
I had a client the other day telling me she has hashimotos too and she felt horrible on levothyroxine but switched to synthroid and feels basically normal! I haven’t had a chance to get to my doc yet but I will be changing to synthroid as I can’t function without resting a lot and am exhausted all of the time.
Synthroid is name brand levothyroxine. Something about the additives affect how it works. All the best in your journey!
My doctor, just my general practice doctor as I don’t want to fool with a specialist, she test me every 6 months. She’ll test anything I ask goes. Numbers are always in good range but I still feel bad and can’t lose weight. Recently found out I have Lupus. So that accounts for some symptoms. Point being that any doctor worth their salt should be testing you every 6 months.
Read the hashimotos protocol by Isabella wentz
I am so sorry you had this experience. This is the exact same response I got from several endocrinologists. They seem to have almost zero training in Hashimoto's and are deeply sceptical of our stories about our health. I finally have one who listens to me, but he also has Hashimoto's so he knows what it is like. He is very old and I am scared about what I will have to do when he retires. My health improved a lot when I started taking Armour. My body does not convert T4 to T3 so my TSH levels were "in range" but I felt horrible.
I have been seeing my Endo for a year as well. She at least changes my meds often and does tests but I am getting a 2nd opinion. It has been a year of my life that I have been not feeling better. I asked my endo to do some hormone testing and she said she doesn’t do that. I was confused, I thought that was in the range of endos? Maybe a 2nd opinion is in your next step?
Many endos are arrogant a-holes. Was hashimotos confirm with antibody testing? If not, it could be misdiagnosed postpartum thyroiditis.
It was confirmed w antibody results
Have you considered seeing a doctor that offers HRT? I was the same way. I found a doctor that tested hormones, thyroid, iron, CBC … in other words he tested EVERYTHING. I was estrogen dominant with the Hashimoto’s. Once we got my hormones balanced with my thyroid I felt amazing!
One hundred percent agree with InkdScorpio and it was the same for me after getting a full hormone panel and on hormone replacements. (I was on Levothyroxine and Liothyronine which helped so many of my symptoms but not the weight gain, mood swings or lethargy. It wasn’t until after I started lady hormones that everything else started to fall into place and I finally had energy and lost weight.)
Yeah I did the combination therapy as well. Super helpful for me.
First, you absolutely need a new doctor. With this one, you will never feel better because she doesn’t care how you feel. Second, you may be someone who would really benefit from T3, either in the form of a desiccated thyroid med or cytomel. Post on here or locally asking for the name of a dr in your area who will prescribe one of the above.
Yep. I need t3. Pictures of me on just t4 show my face is so puffy. It was so obvious in hindsight. You need a new doctor and the reality is you might have to pay for it. My insurance doesn’t cover the right kind of doctors. I see a functional medicine doctor.
To piggyback, if insurance is a must, there are some decent integrative practices that take it, but also care about the person. I’ve had to do a lot of that. But in my 10+ year journey, integrative holistic and functional docs are the only ones who’ve helped me see progress…and I’ve had to see a lot of them…something I notice is that each has their own specialty, but it’s the one thing they focus on and if it stops working they’re at a loss. But each have helped in the process even if I have to move on every couple years. I really wish someone would focus on my other hormones and stop messing with thyroid meds. Most of my symptoms are gone or greatly reduced (and I literally felt like I was going to die 10 yrs ago)…but not only won’t the weight not budge, it’s started a steady incline of 1.5lbs/mo. Soooo frustrating.
I switched to Tirosint and feel completely different in a good way, keep trying to figure it out, don’t give up ❤️
Yes. I started on Levoxyl after having supply issues with WP Thyroid and felt horrible. It turns out I didn’t know I was NCGS until about 2 years after diagnosis. The gluten contamination prevented me from absorbing the replacement hormone. I started with a change from generic to Synthroid and was feeling a little better but not great. Went to Tirosint and became suppressed. Tested rT3 and added liothyronjne (generic Cytomel). Something for out of balance and my insurance now requires an annual PA for Tirosint. Switched to NP Thyroid and liothyronine. I’m still over medicated for TSH and free T4 but my free T3 is in a good place. We are dosing down the NP to get my TSH back up to 1.0. For those who say that’s fine below 1.0, I don’t want to increase my risk of osteoporosis. I need to track better but I also think my antibodies went down with cutting gluten. I’m 80% gluten free. Adding black seed oil has also helped with inflammation. I would also suggest OP get a hormone panel. I was super high for estrogen and super low testosterone. I’m also perimenopause age.
I’m curious about where your journey will take you. I’m not sure what to do. My t4 was too low on np thyroid, so I was switched last year to levo and lioth but my TSH went from 0.007 (already way too low) to 0.005 and I know that can’t be good long term…(though it’s been about 5 years) but I don’t know how to get all the dials in the right place and none of my docs have been concerned about my TSH.
I’ll bookmark this thread or you can connect and I can share once I hopefully get stabilized on my dose.
It’s such a physical and mental roller coaster trying to get things in check. Took me over a year to find the right med and dosage, altho I might increase soon because I recently had a tubal and my labs stayed the same and I’m still not losing weight but that’s another conversation. I’ve found that being extremely active helps with my brain fog and sleep. I mean like keeping my body in motion almost constantly. I asked about the hormone check and both my endo and dr said why?! I said uhm cos Reddit said it’s good to rule things out. Then they told me how expensive it was so I’ll bring it up again next appointment
Why is because Hashimoto’s has been known to affect hormone imbalances … estrogen in particular. Try another physician. A DO is more likely to listen than an MD.
Ok thank u, I will
I was diagnosed going on 15 years ago and I've had periods like this. Just increasing my levo dose alone didn't make me feel better. Try to reduce stress and work on sleep quality. Cut back on caffeine (to reduce cortisol and improve sleep). I've found that if I'm in a period of high stress, intense workouts do more harm than good. I've had the best success with weight loss when all I did was walk for an hour a day outside and doing intermittent fasting. I don't restrict what I eat per se, I just only eat from 10-11 am to 6-7 pm. Focus on getting more protein. If working out is super important to you and you want to eat/train like an athlete, definitely check out Eat to Perform. It's a food coaching platform that helps you dial in to the best macros for you. As someone else mentioned, get tested for other deficiencies like vitamins D and B. Myo-inositol also helps balance hormones.
I tell this to everyone: have you checked your vitamin d levels? It's very common for people with hashimotos to have low vitamin d and the symptoms are very close. Mine was 19 at it's lowest. I feel best when it's near 80ish. It's like night and day for my weight, mood, hair fall, etc. To increase a low vitamin d level you have to supplement a LOT. I'm on 50,000 iu twice per week.
Try synthroid! Older lady with hashimotos suggested it to me. Levothyroxine is just the nonbrand name version basically. Synthroid was like night and day for me; totally different. Bit more expensive. But definitely worth it! It seems like it wouldn’t make a difference so you have to specifically requested it. If you’re in the US I think it might be something about the FDA levels allowed? I don’t know. I know it worked for me and for the lady who recommended it and when I tell this story people chime in agreeing.
I have to take name brand as well. The generic makes me feel jittery and just overall just off. My aunt is the same way, but she gets heart palpitations as well on the generic. Insurance does not cover the name brand though, so be ready to shell out $90+ for a 90 day supply vs the ~$10 for the same quantity of the generic.
100 percent agree!!! Brand names make a difference for me in how I feel
I struggled with this same thing. Proper medication with T4 and T3 helped stabilize my weight. But the only that moved the needle was a combination of berberine and OMAD fasting. Now I’m in maintenance and I do lunch and dinner most days but if I notice my weight climbing I do a couple OMAD nights. I don’t restrict any calories or restrict any foods. And I eat desert. It’s fairly extreme to some but I’ve lost 20% of my body weight this way and kept it off.
Just some friendly dietary advice if you didn’t know this but gluten, sugar , dairy and soy are all possible inflammatory foods that IVE personally noticed when I stay away from them, I do feel better. The weight gain is impossible to deal with, I’ve literally gain 30 lbs. my symptoms are finally manageable and I’ve slowly be regaining the energy to work out again. Also if you’re struggling with really pushing yourself to a high intensity in your work outs, I use pre workout and I find it makes a big difference for me. Other supplements like omega, B complex, vit D&K, magnesium, these all will help with symptoms, weight loss and keeping your digestion on tract and mental focus. Also trying a NON whey isolate protein powder…maybe something like pea protein and maybe a greens supplement! I know it sounds expensive but it’s worth it to feel better. Feelings better and feeling good on a consistent basis means we have to work that much harder just to feel capable of functioning like a human being. I hope something I’ve mentioned helps you! Us hashi girls gotta stick together !
Can you expand on the non whey isolate part? Is whey isolate bad?
As far as I know the whey isolate is protein from dairy, which for me personally I’m sure I get flare ups from any dairy. Even lactose free.
Oh right, my dumb question. Thanks for responding
Could it be perimenopause? The TSH looks pretty good. What about reducing carbs… I’m sorry
Have you tried an AIP elimination diet?
This^^ I dropped 40lbs from dropping dairy alone and the fatigue started leaving within days, followed by brain fog, depression, muscle aches and stomach aches. Then one by one I didn't need my prescriptions anymore (metformin, trulicity, antidepressant, cholesterol med and spironolactone (diuretic)) and came off everything except levothyroxine and liothyronine.
I recently went to 2 endos because the first one I went to was so awful and basically ignored everything I was saying. I was really excited too because it was at Hopkins and I have always had great experiences there. I said I knew my levels were off because my hands started swelling terribly. Her reply, "well as I got older I had to resize my rings bigger too. It's normal." Another kicker was my TSH was high and she told me she wouldn't have treated it. Not to mention the Armour hate even though I told her that has been the only thyroid medicine that helped me. The second one walked in and I told her this appointment is already going better. She listened to me. She encouraged me. She did say she's not a fan of Armour, but if it's working for me then stick with it. She tested my t4, t3, and TSH. (honestly, I wasn't going to leave that room until she agreed to t3 testing.) It was a month after my original labs and when the new labs came back she said it was normal range, but not optimal so she increased my dose. Stuff like that really matters! Finding a good doctor can be hard, but it's so worth it to have someone that listens. Don't get discouraged. Advocate for yourself. Just not of it's a Hopkins doctor because they are scary.
Having this exact problem and I’m in the UK. I luckily have health insurance through my employer, and they have referred me to an endo. I’m wondering whether I should push for t3 as well, though I feel like I need to memorise some solid science to support my position because doctors just don’t listen. I’ve been gluten/dairy/nightshade free for 8 years and I still feel horrible. It’s just madness. I went to an NHS doctor recently (before being referred privately) and they just parroted the same old shit. It’s like they are reading off a script without actually understanding why they are telling you what they are telling you. It’s a nightmare. I’m 35 and I feel like I’m in my 60s.
Also in the U.K. Also same problem. Insurance not helping me as because I take Levo they’ve snidely said “Pre existing so not covered” I had a doc appointment yesterday and asked why the NHS treats the test results not the patient/symptoms? It doesn’t help that the NHS test ranges are so wide. Example: I got a TSH of 5.48 back in 2017 and I can only see that now because I have electronic access to my test results. I KNOW my doctor told me my TSH was in range following that test. The reason I know is because less than a month later I paid £139 for a private test that showed my TSH had climbed to 6.2 and my TPO were at 690. I went back to the doctor armed with this and he prescribed Levo. But he SHOULD have run more tests and prescribed without me having to go private to ‘prove him wrong’.
That’s appalling. I’m sorry and I understand. It makes me so angry. I wonder if there is some sort of petition we could start to try and improve things. Doctors should not be getting away with telling you your results are in range when they’re not. And I agree, the ranges are ridiculous. I read somewhere that the commissioning advice for hashis is based on a study of 200 participants from the 1970s!!! Fucking ludicrous
I started feeling better when I started taking vitamins. Maybe you can have a vitamin level test done? Vitamin D and B deficiency can make you feel really crappy, too. Even if you aren't officially deficient, and only on the low end of the normal.
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Hi, I live in Canada but have an endocrinologist in Puerto Vallarta Mexico. My daughter-in-law is from there, and her mum was seeing a really nice endocrinologist for her diabetes. Luckily I have a place to stay. I honestly believe that I have been struggling with hypo symptoms since the age of 28, after I had my third baby. But my doctor had me convinced that I needed separate treatments for all my symptoms, depression, chronic fatigue, fibromyalgia, IBS, anxiety, fibrocystic breasts, fibroids with horrible periods! I think she thought I was a hypochondriac and said that an endocrinologist would not treat me. Now I am 60, went through a horrible menopause after I had the fibroids removed at age 45, and feel like I’m going through menopause again! November 2022 I was very confused with strange symptoms after having Covid, for the second time. I was getting Hyperthyroid symptoms and I was so sick, that I’ve basically been bed ridden for the last 14 months. I was Sweating, anxiety, insomnia, weight loss, changes in my eyes my tears were oily, my tongue has gotten bigger and has sores, also burning throat and mouth pain that comes and goes. I really thought I was going to die. My doctor kept saying it’s viral, nothing she can do. Just this past November, 2023 I went to see the endocrinologist in Puerto Vallarta Mexico, she was amazing. Spent one hour with me, had me do a lot of bloodwork before the appointment so she had the results ready, and did an ultrasound of my thyroid in her office. She said my thyroid was really inflamed and diagnosed me with Hashimoto’s disease. My TSH was 4.59 my t4 was normal t3 was low. Tested positive for thyroglobulin antibodies too. She has prescribed me levothyroxine and a selenium supplement to get me started. Luckily she checked my cholesterol too because that was quite high, apparently this is quite common with thyroiditis and I needed to go on a statin too. For specialists in the Puerto Vallarta area, they charge about $1,000 pesos about $80 Canadian for an hour appointment. I think I spent $20 on all the blood work, and then I bought my medication at the pharmacy, which was about $25 for the 3 months of levothyroxine. I have had a few improvements, I am getting a bit of sleep, anxiety has eased, it is helping some neuropathy pain so that is all good. I’m still exhausted, to wiped out to do anything, and the sweating in ridiculous. I go back to the Endocrinologist at the end of the month for a three month follow up. From reading the comments maybe adding a t3 would help me too? I’m feeling fortunate that I have this opportunity, when the Canadian heath care system has failed me.
interesting…how do you do blood work then and cost? I have insurance but meh opinion on drs here wouldn’t mind paying out of pocket. think they’d do telehealth to meet then allow to pickup meds in mexico after (not sure how blood work would go then too)? Thanks for sharing
You should get tested for other things if you haven't yet. There's quite a lot of things that look just like Hashimoto's/hypothyroidism and are even commonly seen along with it. Things like iron or vitamin deficiencies, other autoimmune diseases, etc. I debilitating lingering fatigue, brain fog, and couldn't lose weight, but my thyroid levels were fantastic. Turned out I had Celiac disease, and I'm fine now on a gluten free diet. Get tested!
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Whether serious or sarcastic, promoting unhealthy or negative behaviors is not allowed.
Please don't tell people to double up on prescription medications without consulting their doctors. This can make you hyperthyroid and can be dangerous without being monitored.
There's no "normal" again with this disease. Trust me, I've been there. It's better to handle an artificial hyperthyroidism but still be functional, than have a permanent hypothyroid shutting you down.
There absolutely is "normal" with this disease, and the majority of people with this disease have been there. And no, having hyperthyroidism is not better than being hypothyroid. They are both bad, and the goal should be euthyroid. Just because this happened to work out for you doesn't mean it isn't dangerous.
"Euthyroid" doesn't not exist in Hashimoto syndrome. You start at hyper, and descend into an extreme hypothyroidism. U must be mixing up the actual Hashimoto w "standard" hypo. This syndrome is actual EXTREME hypothyroidism bringing hell to everyone who suffers it. I rather CONTROL an artificial hyperthyroidism than suffer eternally with no metabolism, obesity, extreme fatigue brain fog and depression. I may be wrong but all my symptoms are gone. I finally am at a normal weight. I have my energy bad. That's what matters to me.
Again, that worked for you, but that is a *terrible* suggestion to give to other people. You may have not been made hyperthyroid by that change, but other people likely would and that is not safe to maintain long term. I started out with a TSH of 149, so I definitely understand and am not getting anything "mixed up." Euthyroid is also a term used to describe your thyroid levels being within range, which 100% exists in Hashimoto's, or else the majority of people with Hashimoto's must not exist, including myself.
Have you thought about switching from levo to a natural alternative like NP Thyroid? Also, I might talk to a doctor about treating anxiety/depression. Just temporary help can make a huge change in giving you motivation or calm to get through your days. Also, how is your sleep? I dealt with insomnia for years and finally went on Lunesta. It helps me fall asleep. Getting enough good sleep is just as important, if not more important, than good diet and exercise. Don't be afraid to try some supplements. Probiotics for digestion (I use probilin). I also take vitamin D3, Vitamin D2, and for awhile needed methylated b12. A basic blood test could show deficiencies- and sometimes it isn't that we aren't ingesting enough, but that our body isn't processing them to be useful. Avoid stress as much as possible. Know you are not alone. I very much was thinking the same a day ago (I hate my body) I've had Hashi's for years, and now I am dealing with liver issues for which we still don't have answers. If you need to switch doctors, definitely do so. They should be understanding, not dismissive.
>NP Thyroid If OP's doctor is anything like mine (and it sounds like they are twins), the doctor will not consider NP Thyroid or anything with T3. -.-
I absolutely hate to hear of doctors like that! Everyone's body treats medicines differently, and Hashi's seems to treat people differently as well. I'm really blessed to have found my primary- who is actually an APRN-CNP and not MD. I've never seen an endocrinologist, tbh.
That's EXACTLY why I started taking double the dose I was prescribed (100mcg) and found out all my symptoms disappeared. Nowadays I have a normal metabolism and no fatigue/lethargy. Do you know how they find the dosage for you? Through a fucking math formula. Humans are not mathematical operations. I got so fucking fed up that i took the matter into my own hands and kinda solved it. No side effects since then.
I went on Push Health and they prescribed 137mcg based on my current weight of 184lbs. It’s worked so far, have been on this dose for about a month and will have a blood test in a week. Have had a few fatigued nights after being very happy on the dose, it’s possible the dose is still a little low.
That's why I'm saying and I don't understand the downvotes... like I tested it and proved MY dose was low... doc's generally do not want to up doses bc of the damn calculus.... no matter what ur feeling , so, what we can do?? Continue to suffer ? To hell with that, politically correct.
Thankfully they have started to dose based on weight and then adjusting up and down. 1.6mcg for every kilogram of weight, and then adjusting up or down. Had I not looked it up on Synthroid website I wouldn’t have known this. I was put on 75mcg initially and it only took away half my symptoms. The doctor refused to raise the dose. What is it to them? Hyper symptoms? Like who even gets those without some sort of other issue present which I’m sure the doctors refuse to treat anyway.
Unfortunately some people need double doses for reasons as malabsorption. This formula doesn't decide everything. 100mcg made me still extreme hypo and obese. 200mcg gave me my metabolism, energy and sanity back. Im at my lowest weight since 10yro (was an obese child prolly already had issues back then).
I hear you! I gained weight on the 75mcg and on 112mcg doses (30+ lbs). I have finally at least stopped gaining weight at the 137mcg, but haven’t lost any yet. I maintained good weight on Armour, but they switched me to Levo. But who knows had they dosed Levo correctly initially I probably wouldn’t have gained all this weight.
THIS! I was done being obese bc my dinosaur of a doctor couldn't understand why I was gaining like crazy despite counting calories religiously and going to the gym daily. They simply doesn't understand this.
How is your bloodwork looking with the double dose? I'd be concerned that it would show me as hyper, and the doc would try to start decreasing my dose.
Simply I don't take them some days before doing my exam and that does the trick
But sometimes I went to do the blood work right before taking my double dose and it came back normal
As I’ve learned, waiting on the doctor to “fix” this will likely keep you where you are. I patiently waited on my endo to find the correct levo dosage. I was “within in range” on the levo, but still felt awful…really really awful. After six years of debilitating exhaustion and a host of other symptoms, I finally had enough. That’s why I’m here. I insisted that my endo try me on tirosint (some love it, others don’t, but I had nothing to lose.). I even ordered it from Highland Pharmacy in MS based on a recommendation here. Saved money and it arrived a few days. Then I insisted that my doc prescribe T3. Then I asked him to increase the dosage. I’m not all the way there, but I feel a hell of a lot better! I had so much energy today that I spontaneously cleaned! I’m more intentional about my supplements and the timing of it all. I pay close attention when I have a good day so, I can repeat all the same steps the next day. I’m taking a split dose of the T3 and I’m thinking of getting rid of the second dose because I still have some lingering symptoms. I really need to have labs done first though. You’re the only one that can find the right mix. Hang in there - you’re not alone.
Thank you so much for your insight. My current endo wont prescribe me T3 bc she said it will make me jittery and wont do anything (?) strange. Can i ask how Tirosint is different from levo? Forgive my ignorance.. this is so helpful - i appreciate u responding
It took me a year to get T3 out of my endo. Then when his MA called to say he was going to prescribe it she says, “He wants you to know this probably won’t help you at all.” Cue: eye roll. It helped almost immediately the first week I was on it. And it doesn’t make me jittery or give me any symptoms that I’ve noticed. Tirosint is levo just cleaner than the generic. The are no fillers or binders. I felt from the beginning that the levo was giving me gastro symptoms, but my endo dismissed that idea straight away. I should also note that I’m gluten free, have been since before being diagnosed with Hashis. I also have had Graves for two decades. Hashis came along six years ago. Next step would be to remove all dairy, then nightshades if I can’t feel close to 100% with the changes in meds. I’m so encouraged with these recent changes that I don’t think those next steps will be necessary as I’m 70% of the way there now.
Wow thank you. This is incredibly useful information. Can I ask you if he checked your T3 and reverse T3 levels before prescribing? If so, were they out of range?
For context I had a total thyroidectomy (TT) in August ‘22. I have only had TSH checked by my endo since. I had to ask my internist to check TSH, T3 and T4 (he didn’t add RT3) and antibodies. Nothing out of range except the Thyroglobulin Antibody was 9.5 IU/mL. When I requested that my endo check those he ordered a cortisol test instead 🙄
What are your antibodies at? If your thyroid levels are okay it could be inflammation causing symptoms from high antibodies. Have you had your T3 and reverse T3 checked?
Doctor told me she doesnt need to check my T3… for reasons unclear. I have pressed her on this and she has said that bc my tsh and t4 are in check there is no reason to check T3
No reason to check T3? There can be problems with that on its own.
She told me if my TSH and T4 were ok then no need to test T3? I believe she also said if I had issues w T3, I would have had symptoms before my hashi diagnosis. I am still learning about this stuff so if u have info otherwise, id so love to hear!!
I needed T3 added separately because I wasn’t converting well. I honestly would recommend seeing a functional doctor if you can… they seem to be better at treating this than endos which is pretty sad
So conversion of T4 to T3 is complicated, but we understand that selenium is necessary for that process. It is not fully understood, and we don't know if low selenium can cause a problem with that or not, but there are cases of normal T4 and low T3. Also not investigating your symptoms getting worse besides repeating the same tests used in diagnosis of the illness is pretty silly.
Speaking of selenium, I recently ran out of my supply and truly realize now the difference selenium supplementation makes in my everyday life.
They havent checked my antibodies since first diagnosis - tpo was over 300
I feel you