Underactive Thyroid Issues

I know I'm not alone out there but I don't feel like I have the knowledge / support I need. I'm eating right, working out, but my body just doesn't drop weight.

I'm on Levothyroxine but it doesn't seem to be helping. My doc says my numbers look good, but I hear there's 2 numbers and not all doctors look at both?

What are the experiences of others? What are you taking? I'm not looking for medical advice, just hoping to be able to learn from others' experiences and arm myself with questions I'd like to have answered.


  • Bostonbee79
    Bostonbee79 Posts: 40 Member
    I hope you get some answers! I'm also on that med, and I've never felt a difference off it or on it. I will say that since being on it, I have had a much harder time losing weight. But feel like I have gained very quickly!!
  • trublutopaz
    trublutopaz Posts: 70 Member
    I'm just starting on this myself as I had my thyroid removed three weeks ago. I have a very strong history of thyroid issues. Heck, even my dog is on thyroid meds. I know the first few days the mood swings were really bad. Anything would set me off. I also know it's important to take the meds on an empty stomach first thing in the morning and wait at least 30 minutes before eating. Some foods limit the effectiveness of thyroid meds. Also it's important to take calcium and magnesium to avoid cramping and other issues. Check with an endocrinologist for more information. I wish I had done that YEARS ago rather than struggling with this problem for 20 years. Good luck.
  • lalabrucey
    lalabrucey Posts: 244 Member
    edited December 2015
    I had Graves Disease for around 10 years (overactive thyroid/hyperthyroidism) and in the last couple of years I had the radio iodine treatment which killed off my ability to make the thyroid hormones and essentially I now have hypothyroidism (underactive thyroid) and have to take thyroxine for the rest of my life.

    I went from being very overactive to very underactive (TSH went from <0.1 (overactive) to approx 45 (UNDERACTIVE)!) and have seen both sides of the fence.

    My lab states the normal range for TSH is between 0.4 and 4. My body feels good around 1.5-2. I start to feel sluggish when it drops down to 2. Everyone has their 'normal' point which will be different for every person but will be within the normal range.

    The poster above is 100% correct, you must take the medication the same way each time; for most people this is first thing in the morning, empty stomach 30 mins before food. I take it this way but there is a cup of tea during that time. You don't have to have an empty stomach but you must take the medication in the same conditions each time. This is so important.

    When underactive - my experience is that you need to be well outside the normal range to not loose weight when eating well and exercising. When you reach that point, the biggest problem is getting the energy and willpower to exercise in the first place. I follow my own test results pretty closely and I can say hand on my heart that when the TSH is in the normal range I don't have any issues.

    *BUT* you have to make sure your logging is 100% accurate. I have found a lot of the MFP food entries are inaccurate so have been building my own database and bought food scales to weigh everything. Also make sure exercise logs are accurate too. Fitbit is a great way to do this but a bit of internet research will give you good approximate calorie burns for age/gender/weight by activity.

    The 3 main values on the thyroid tests are TSH, FT4 and FT3. TSH is the main indicator here and the other two kind of shift in relation to TSH but its not always so cut and dried. FT4/FT3 do help paint a picture but as far as medication goes, and managing your levels, the TSH is the only number you need to worry about.
    Higher TSH number = underactive side.
    Lower TSH number = overactive side.

    I should make it clear I am not a doctor, but did work in a medical education facility as a data analyst for about 6 years and was fortunate to learn a lot about this when I was diagnosed as we had just done a campaign on TSH/FT4/FT3 testing.

    Hope this helps, if you have any questions about my experiences, feel free to message me directly

  • Fuzzipeg
    Fuzzipeg Posts: 2,299 Member
    You are far from on your own. There are many for whom levo is not the answer their body needs. People can react to their medication because of the fillers/binders or preservatives, knowing which or how many issues are yours are next to impossible to isolate. Many general practitioners view the thyroid in a very simplistic way, this is not their fault it comes from thyroid function almost being a subtext to endocrinology.

    Our thyroid gland functions are implicated in many of out bodies systems, it can be compromised by disruptions in these other systems too which makes it all very far from simple. Referring to the Tsh measurement, that is thyroid stimulating hormone, as a measure of thyroid function can be misleading. Using Levo is known to suppress the thyroid stimulating hormone so preventing the thyroid from working even as poorly as it did, making active hormone less possible. Also knowing the t4 numbers, the hormone which becomes active in the t3 form does not predict the amount being turned into the active state because there are several points, in this "change", at which problems can present. On their own tsh, and t4 alone do not identify the underlying causes of thyroid issues. Even t3 in seemingly adequate numbers may hide there being insufficient in our cells. Men are less likely to have thyroid issues than women so being diagnosed is something of an achievement for you.

    Try reading the Stop the Thyroid Madness web site or book, this site was set up some 20 plus years ago in the US to help people understand their thyroid problem, know which tests should be done, how numbers should be interpreted, the need to know if you have thyroid antibodies which means you have an autoimmune condition where the body rejects the thyroid itself because it thinks its something we should not have, so the immune system becomes involved. For those of us who live in the USA there is also a list of doctors who are known to offer a comprehensive service which helps people to their best outcome. I also look at our Thyroid UK site, this has information on how to be treated as an "individual" here our prescription policy can be employed in a one size fits all way which is not always true. There is also a group on here for all things thyroid though it is quiet at the moment.

    For those of us who have thyroid antibodies the answer may be to discover the cause of these antibodies, the things which drive our autoimmune thyroid problems. The general title of "Inflammation" seems to cover this problem. Many of us have symptoms related to IBS joint pain and more. It seems our immune system starts with our digestive tract, calming our personal digestion seems like something to try. If only general medicine was able to keep up with the latest thoughts.

    Please read and make notes on anything with true medical authority, hospitals, universities, doctors who's qualifications are available and authenticated. Be directed by your self-knowledge, for each person with thyroid problems there is their own personal relief though we may tend to share part of the same umbrella, possibly only for a while till you get closer to being well.
  • snickerscharlie
    snickerscharlie Posts: 8,578 Member
    There is also a special group here on MFP for those with thyroid issues. Lots of knowledgeable members with similar issues there:


  • dontwannabafatgirl
    I recommend switching to synthroid. I was on a an ever increasing dose of levothroxin for years struggling with energy levels, dry skin and hair loss. Thankfully when I moved to a new city my new doctor told me he writes scripts for generic drugs except thyroid medication. He prescribed a low dose of synthroid for me and within weeks I could tell a difference in my energy level. Within a month my hair loss dropped to practically nil. Ive been on synthroid ever since. It's not much more expensive than levothroxin and with a letter from your doctor most insurance company's cover it. If they won't just ask your pharmacy for a discount. Walgreens does this. Also my doctor always had lots of samples that have coupons on the box that I gave to my sisters so they could switch too. It's worked for me. My weight problems didn't start until my lifestyle became sedentary. Now I'm tackling those.
  • LSwan2
    LSwan2 Posts: 64 Member
    Hi, I've had thyroid issues for about 7 years. For about 4 years I took levothyroxine. I was getting side effects. I switched to l tyrosine. It is a natural supplement that u buy in the health food store. U also need iodine and selenium which the doctors do not tell u. With l tyrosine u can take more in the afternoon if u need it. It is not very expensive.

  • 20Grit
    20Grit Posts: 752 Member
    Everyone I know that takes Levothyroxine/Synthroid goes down hill....I am hypothyroid and told my doctor I wouldn't take it, she prescribed nature throid. It has helped me out a lot. That and getting everything else tested, You have to find a doctor that will test every little thing, so many of mine said "you are within normal range" and "just keep taking your antidepressants, and the fact your gaining, well yer just getting old".
  • DoctahJenn
    DoctahJenn Posts: 616 Member
    I've been on levothyroxine for twelve years, and it works wonderfully for me. But then, my "natural" levels are just plain crazy, so there's a huge difference between when I take it and when I don't.

    BUT. Since eating better and getting plenty of exercise, my thyroid has improved significantly. I've dropped down from a 225 dose to a 75 dose, and instead of fluctuating all over, I'm pretty steady for once.

    My best advice is to be referred to an Endo doctor, or barring that, an internal medicine doctor. (Which is what I see as my PCP, because he's knowledgeable about how the thyroid can affect other problems that pop up.) With one of those two specialists, you'll know they're looking at everything they need to make sure you're where you ought to be.
  • tcunbeliever
    tcunbeliever Posts: 8,219 Member
    Hashimoto's runs in my family (mother, aunt, grandmother, great grandmother). There is a very compelling link between gluten and auto-immune thyroid issues, if you google "gluten thyroid link" you will find plenty of articles/studies with details. I really feel that going totally gluten free is the best thing for anyone with a thyroid problem, but of course that is an individual decision. Also, your body needs certain nutrients for your thyroid to function properly so I take Thyroid Activator and Adrenal Support (both from Nature's Sunshine) whenever I start to feel kind of fatigued for no reason.
  • lalabrucey
    lalabrucey Posts: 244 Member
    Although unrelated to your original question re weight loss vs thyroid vs normal levels, I take Levothyroxine with no issues, but my Grandmother who also had Graves, then got treated and takes thyroxine the same as me, Levothyroxine makes her incredibly ill and irritable.

    Interesting re gluten link from poster above; my Niece has just been diagnosed Coeliac and they suspect her sister has an intolerance and my Aunt is also Coeliac. The Graves and Coeliac is on my mothers side of the family and I have never thought about it before but there are many of us with either Coeliac or thyroid problems. I am ok with gluten - well fairly sure, but it's interesting to note all the same. I might do some further reading on this!

    Maybe your spot on the normal range is too low for 'you'? I find that once I get to 2 I feel sluggish and really tired even though its well in the normal range, its not my normal. I get three monthly tests to make sure I am stable but have noticed that as my weight and activity levels change so does my levels and have to adjust my meds. The Dr says this is normal which is why you should test every few months
  • AnnPT77
    AnnPT77 Posts: 32,685 Member
    DoctahJenn wrote: »
    I've been on levothyroxine for twelve years, and it works wonderfully for me.

    Yup, me, too - 15 years. It took a while to get the dosage in the right spot, and I've needed a couple of increases since then, but I really don't have complaints. Taking meds very consistently *is* important. Please *don't* think I discount the reports from folks with more difficult situations. However, I think you might get disproportionately many responses from folks with more severe problems, since the rest of us probably take the situation more for granted. Hypothyroidism is very common.

    With consistent meticulous food weighing/logging, I've found it fairly simple (not always easy ;-) ) to lose weight, dropping about 57 pounds since April (SW 183, CW 125-point-something, very near goal). And I'm old (60), and menopausal, two other circumstances that others sometimes find to hinder weight loss efforts.

    +1 to advice to be very compliant with when & how you're supposed to take meds, and to seek help from a specialist (endocrinologist) if things don't seem to be working out for you. -1 to any attempts of anyone who might try to diagnose you and change your treatment via a forum post.

    Success is possible.
  • briters89
    briters89 Posts: 10 Member
    My doctor will ONLY give me synthroid. I always assumed levy and synthroid were identical, but supposedly not. He said there is a huge difference on generic of this particular medication. Maybe that's a contributing factor? It's worth a bit of research...
  • AnnPT77
    AnnPT77 Posts: 32,685 Member
    briters89 wrote: »
    My doctor will ONLY give me synthroid. I always assumed levy and synthroid were identical, but supposedly not. He said there is a huge difference on generic of this particular medication. Maybe that's a contributing factor? It's worth a bit of research...

    My understanding - which is not a professional's - is that this is a type of drug where the exact formulation can make a difference in efficacy. With the generic, you could be getting a slightly different formulation when the script is refilled. I used to be on Synthroid (which is a specific *brand* of levothyroxine), then switched to levothyroxine generic. So far, it hasn't made a significant difference for me. But I'm kind of a sturdy, insensitive peasant in ever so many ways, so maybe this is just another such way. ;) .
  • Angel0298
    Angel0298 Posts: 25 Member
    I have hypothyroidism and take Levothyroxin and Liothyronine. TSH is just a basic test to look at thyroid function however there are more tests that can be performed. Take a look at The American Thyroid Association website. One other thing is each person reacts differently even if they're in the normal range. Some do better on the high end and others on the low end. Talk to your doctor and request TSH, T4, T3 and Free T4 (FT4). I have a good relationship with my doctor so I asked for those tests when I went for my first test after star tinting Levothyroxin. If you have a doctor that just wants to look at the TSH, that website has a brochure about the tests so you could take it with you.
  • socajam
    socajam Posts: 2,530 Member
    edited January 2016
    I agree with dontwannabafatgirl recommendations in switching to synthroid, its more expensive, but better. I do not believe in taking generic for certain conditions and thyroid functions is one of them.

    I would recommend getting your Vitamin D levels checked out. I had mine checked last year, my levels were extremely low. My endocrinologist put me on 2000 IU and it was like night and day, the fog was lifted from my brain, I was able to function better, not so emotional and in a better state of mind, was even able to cope with the dark winter days.

    From my last test everything is fine, now I need to starting taking a multivitamin - looking for a good one for the New Year.

    Diet is very important, also exercise (everyday) something I am not very good at, need to make a change in 2016 and stick to it.

    Give up eating all that white stuff, no soy etc. From tomorrow, I am going Premium, will be do calorie cycling, that is something that have worked in the past and I am willing to give it another try.

    For people like us, it is a struggle to lose weight, it can be done, but we have to get in the habit to exercise every day and watch our calorie intake.

    I have not being logging for the holidays, but will start tomorrow. If you want you can look at my diary, but you will have to look back to November to find some of the things that I eat (clean) daily.

    Good luck.