I need help. Extremly miserable on NDT and feel like I'm the only one with these symptoms.... advice?

Hey friends, I'm new here and I'm excited to be involved.... long story short, I had a TT due to Thyca last November, RAI in January. Started on 150 Levoxyl with Cytomel and switched to Synthroid, ultimately to Tirosint 137 which I just never felt good on. July I started Naturethroid an a month ago added in 25 mcg levo to my 2 grains of NT. The past month expecially I have had the WORST aches, stuffy sinuses, but insomnia has been the worst since NDT. I've alternated dosages and felt hypo and then hyper and my FT4 has been long on NDT alone.... but I honestly just want to suffocate myself. I'm wondering if maybe my body needed more time on levo alone... I was told I wasn't a good converter but maybe I just needed more time... or maybe more T4 with less T3? I am so depressed and I am jolted after five hours of sleep a night now... and I think it's because my TSH is beyond in hypers-ville, but I am miserable, sick, and need advice. Has anyone switched and felt ok? I feel like a lot of those I talk to taking NDT are kinda' cult-ish and are quick to attack one when they say they don't feel good. And my vitamins and minerals are good. My life went downhill only once getting on hormone therapy F/T... even the six week prior to RAI, I was on Cytomel only and felt ok. But now? I look like a monster.

Please help.

20 Replies

  • If you've had a TT, I am hypo so don't know much, I would suggest you start at the beginning again.

    Why did you switch from 150 levo with Cytomel?

  • I went from levo to NDT back on July 1st... I was started on the 150 following RAI but I found that that amount was TOO much too soon... and the docs added in Cytomel but I'd feel super hot, heart palps... they said I don't convert well but then in retrospect, I wonder if I just needed more time for my body to figure this out... you know? Before NDT I was lessened to Tirosint 137 because it's so pure that the 150 was just too much... :/

  • If you were taking 150mcg of levo and found that was too much I don't know why the docs added in Cytomel. You were probably overdosed according to your symptoms.

  • Welcome to the forum, Misscliocat.

    Can you post your recent thyroid results with the ranges (figures in brackets after results)? We'll be able to see whether you are optimally medicated. Can you post your vitamin and mineral results too. Doctors often say results are ok because they are in range, but that in range isn't necessarily optimal.

    I was also fine on T3 for 3 months until I was switched to Levothyroxine after RAI. Took a long time to figure out I wasn't doing well because Levothyroxine was causing problems but I'm good now on T4+T3.

    Thyroidless patients often need some T3 to help conversion and this can be achieved with synthetic T4 + T3, NDT, or NDT + synthetic T4 or T3.

  • Thank you so much for responding!

    I actually had labs done last Tuesday that I am awaiting on that would have the updated T4 addition... but as of 9/22 they were:

    TSH: .05

    FT3: 2.7

    FT4: 0.9

    Alas, these did not have the reference ranges attached, and these were also taken 15 hours after my second NDT dose the day before...

    Can I ask how much T4 & T3 you take now if you don't mind? And how do you feel?

    I felt the best the first week on NDT, maybe with the lingering T4 in my system but my insomnia is so bad.... I look exhausted.... I do feel I need more T4 and maybe just a bit less of T3.... I feel after the run-off that my body is like, "help! that hypothyroidism is here!" but I also think that since I've been more on Cytomel than not, that maybe I am quite possibly sensitive to it.... I know my body likes it, but not in the range that is based in Naturethroid... so I'm thinking of starting over on levothyroxine and I am so scared... I've lost a lot of weight on NDT but I feel more brain much and brain fatigue as I call it... not to mention a low grade anxiety and depression... I never thought that this new life would be so hard.... and it's killing me.. in every way. :(

    Thank you for being so helpful.... it means so much.

  • Misscliocat, TSH is good and low, my endo targets <0.1 to reduce risk of recurrence. I can't tell what FT4 and FT3 are without the ranges which differ according to region and country.

    How much Cytomel were you taking with 150mcg Levothyroxine?

    I'm taking 75/100mcg Levothyroxine alternate days plus 30mcg T3 split into 20mcg am and 10mcg pm. I'm fairly well now, but not as good as I was prior to Hashimoto's and thyCa. I still lack stamina and fitness and need to pace myself.

  • Thank you for the info and support... And I was anywhere from 10mcg of Cytomel to 25 mcg at one point.... I feel somewhat more emotionally better on NDT but the hair loss, anxiety, tingling.... it's just never ending and I worry I'll never feel decent enough where I can wake up and be optimistic again... I can't believe how much and how fast everything has changed in less than a year, you know? But I see others do get better and I hope we all get there soon...

  • Hi...just wanted you to know you are not alone in this nightmare...am afraid that's the only way to describe this!!, personally I have had many problems with T4 over the last 14 months (on it 11 years) am now on NDT and improving albeit slowly...had a massive blip this week as Endo asked me to add T4 to the mix but I do t think he read up on my history with T4. Anyway I do wish you all the best with this...many great people on here...try not to get bogged down but it is very good advice..especially checking vits and levels etc.

    I understand to get to a better state of health it will take me some time after all I feel I have been undermedicated for some time..I also used to work nights which I feel,stuffed up my adrenals so that's not helping.

    I do generally feel better on NDT..I do have rubbish days but hopefully in time they will lessen.

    I really wish you well on this journey.

  • I was taking T4 for a month and just ceased it as I think it's added issues! I know some on it that feel great with it but I feel it has to be one or the other... for me... but a nightmare it is!

  • Hair loss, tingling... Suppose you have checked that iron,ferritin, b12 and d3 are all well up in their ranges? Thyroid hormones need everything else to be ok before they work properly. Your body has has a massive shock with an operation and a dose of radioactivity. The stuff they use to knock you out in the operation can instantly remove all your b12 stores.

    If your thyroid hormones cannot work properly, then adrenalin may be keeping you going. And you never going to manage rest or sleep with adrenalin pumping round... It just makes you tired and wired.

    Life with no thyroid can be good if you get all the vits and minerals balanced, as well at the correct thyroid hormones..... But please remember the huge shock your poor body has been through.

    Get proper vitamin and mineral testing and take things slowly.

    Xx g

  • yes! I agree! and getting all retested in a month... I take iron but I was vegan up until a few months ago, so not sure how to get that ferritin going... but I definitely think my adrenals have had issues for a long time, even before TT... :/

  • Hi misscliocat :)

    I know what you mean about people being cultish about taking NDT, but you won't find that here. We know that it doesn't suit everyone. It certainly didn't suit me! I'm best on T3 only, because I couldn't tolerate T4 in any form. Certainly couldn't convert it. You could be the same. But it's all trial and error, I'm afraid. One day, I'm sure, you'll find the dose that suits you.

    But Don't worry about the TSH unless it goes high. As Clutter said, you need it low so that the cancer doesn't return. But that does not in any way mean that you are 'hyper' - or over-dosed - you need the FT4 and FT3 to tell that.

    Take care. :)

  • thank you!! yes, I've been told I don't convert well although this was maybe two months into T4 and after RAI, so maybe my body was just like, "????" with it? I am so scared to go off of NDT because I don't feel so 'manic' as I did on T4 and that could be from just too high a dose with cytomel, but so many people I talk to on T4 only say they feel normal, can function normal, so I'm hoping that maybe my body just needed the time... but I'm so scared, so so so scared.... I can't believe the support I've already received on here... it's mind blowing and amazing... :)

  • It's perfectly normal that between us, we support and comfort. Nobody else can know what we go through.

    Please Don't be scared. Nothing you do is irrepairable. If you increase too much, you can go down again. If you go down too far, you can go up again. If you change to T4 only, and it doesn't suit you, you can always go back to NDT. You're not commited in any way. Your symptoms might get worse again for a while, but then they will get better again. You're not going to do any permenant damage with just trying things.

    I think I tried just about everything. T4 only, T4+T3, then various brands of NDT - Armour, Thiroyd, can't remember the others, and finally T3 only. No permenant damage was done - although there were times on NDT I thought I was going to die! And I put on a ton of weight, but the weight's come off now. And it's Worth experimenting with different things and different doses if it means that eventually, you're going to find the right thing and the right dose.

    However, you must remember to give things time to work. Nothing to do with thyroid is instant. Everything takes time.

    But, Don't make the mistake of thinking that it's all about hormones. It isn't. It's also about nutrition. Vit D, vit B12, folate, iron and ferritin must all be optimal - not just 'in range', but optimal - for your body to be able to use the hormone we're giving it. And whilst we're hypo, we get dfficient in certain nutrients very quickly. So, you must keep an eye on those. :)

  • i got extremely ill on ndt. I had hyper symptoms on very little, like 1 grain...heart racing , anxiety, sweating, diarrhea, acne, hairloss, swelling, high bp and high blood sugar..tried it 3x, each time it took 8 months for the symptoms to subside after stopping it. I will never use it again. For some people it flares up their hashi's..autoimmune disease,puts it into overdrive , which causes all those symptoms. Some peoples bodies make antibodies to actual thyroid hormones. The best thing to try, is putting it into remission by healing your immune system and get off the ndt..try t3 only, if you don't convert well.

  • oh my gosh, I have a friend on NDT and having issues... but I've been having symptoms and my gosh, much more mental clarity but feel like a flu is going on can't sleep... thank you for sharing your experience, even though that is horrible and breaks my heart! are you just on levothyroxine now and feeling ok?

  • I am not ok at all, but those symptoms i mentioned, are gone. I have autoimmune thyroid, and a leaky gut, which people with autoimmune disease have and i am working with a doctor to heal my immune system. I am on t3 only.

  • hi. sorry to hear of your misery. i am not that well versed with the thyroid meds when it follows a surgery or anything other than hypothyroidism. i have been working with a physician on my mom's behalf and i have probably done more reading than he has. as long as i document what i want to do and why, he makes the changes. i guess he agrees with my thinking.

    anyway, back to your problem which, btw, i don't fully understand. i just want to point out a few things. if thyroid meds are not NDT they generally have only the Levothyroxine (T4). the NDT has both T4 and T3. synthroid is only T4 and cytomel is a med that gives you T3. i have been told that it is better, if possible, to take the NDT rather than the synthetics. also, cytomel can be problematic. it is important to know that whatever the dosage on the synthetic does not mean you continue the same dosage on the NDT. check the amount of mg as that may be a better way of doing a comparison rather than using grains. not sure i remember the site correctly but try stopthethyroidmaddness.com. they have a comparison chart as well as some valuable info. my most important suggestion for you is to see an endocrinologist who specializes in thyroid problems. sometimes GP don't know enough. you might also consider HOW you take your thyroid medicine. my mother took it one way for years and years until i found out she wasn't doing it correctly. i have since learned that it should be 1. the same time every day 2. taken by itself with no other meds 3. taken with about 3-4 ounces of water, minimum and 4. nothing to eat and no other meds for an hour after taking the thyroid meds. this is all debatable, i suppose but we saw a difference in my mom when we made the change.

    don't know if any of this info was helpful or if you already knew it but....i wish you the best. when on the proper dosage of thyroid it can make a wonderful difference. the vitamins and minerals that you take also contribute to your well being or lack there of.

  • Misscliocat, I don't know if I can help but I also am having a difficult time on NDT--nothing conclusive yet, though. On 3/4 of a grain and 12.5 of iodine w/selenium, I was pretty miserable. For me clarity emerges usually at 4 pm. Yesterday, it wasn't until 8:00 pm. I cut back to 1/2 grain today, and only a few drops of iodine (Lugol's Plus), and I feel better, less groggy and not depressed but all in all, this isn't good, and I know I'm not yet in the right range. I know what you mean about looking like a monster! I always apply heat (sauna -- means I have to go to my college campus), exercise upper body (yoga cobra and light weights for upper body---many, many reps), and I feel better in the sense that I can live my day. I'm wondering if I need 2 doses a day. Also there is an over the counter brand in the U. S. called Priority One, which I think worked better, especially in combination with Nature Throid--but, am not a med person and am still in the dark about interactions, amounts, etc. I suppose someone might suggest a combination. I can' suggest much, except getting your body moving, and then, of course, there's sleep.

  • yes! split that dose! although, the amount I take is two grains and I feel like I need 1.5 just to get my day started and then the remainder is never enough. it's so hard, this new life. although, I did find out just this past week that I have hashi's that no doctor has even bothered searching for, nor did they during the pathology for my thyroid itself!

    being on both T4 and NDT I'm realizing is causing a lot of issues. I've been having this really strong body ache in my chest, lungs, buttocks (TMI) and such and I am thinking that this is why it's not suggested to do both... but I also feel my body needs T4 and more of it because when on T4 only I felt physically more zealous... T3 has helped my emotional aspect but it's a mess. so I'm pretty certain that I am going back on synthetics and this saddens me but I feel confident or at least more confident on how to make it work. because my body now feels extremely hypo but my mind feels hyper... and i get a pounding beat that feels more like hypo as opposed to the heart pounding from being hyper. gah.

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