LEVO TO NDT BACK TO LEVO - Results In from BH - Thyroid UK

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LEVO TO NDT BACK TO LEVO - Results In from BH

Christinah61
Christinah61

Hi Girls/Guys, I hope I find you all well

I just want your experience, knowledge and help... PLEASE, been back on my levothyroxine 150mcg for 6 weeks after falling poorly with all the usual thyroid symptoms during the summer and autumn. Having been on Nature Throid for nearly 2 years 3 grains and doing well to suddenly after getting my April batch of tablets I went downhill very quickly, I crawled to the GP literally I felt so poorly, and asked her for my levo back which I take 150mcgs at 06.30am every day, at midday I take my B12 oral spray my vitamin D spray, around 2 pm I take selenium, and in the evening I take magnesium.

my results just came in just from BH

TSH 0.63 0.27 - 4.20

T4 Total 95.8 66 - 181

Free T4 19.10 12.0 - 22.0

Free T3 4.60 3.1- 6.8

FERRITIN 117.0 13-150

VIT D 111 Def <30 Insufficient 30 -50

VIT B12 503 Def <145 Insufficient 145 - 250

Serum Folate >45 8.83 - 60.8

I know I have hashis

Anti- thyroidperoxidase abs H 140.0 <34

Anti - Thyroglobulin abs H 4000 <115

Thanking you all in advance for any advice and help.

Christina xx

.

52 Replies
oldestnewest

Hi Christinah61..how do you feel since going back on levo? I am no expert but I would be pleased with thyroid results like yours...I was never tested for hashi's ,had my thyroid removed, so I can't help you with that...I feel OK since I went back on levo and t3 , but time will tell....x

Hi bev hope u r well.

I am over the moon with my rezults to be honest its been a very long hard road ...as we all know and really that was my last resort

.i am on levo 150mcg daily as i was really from the age of 16 i am now 62 and personally i have no faith in ndt anymore or what they put in it..i know lots of members are great on it but for me to begin with it was ok but the last batch made me so ill...so happy days i will take it day by day as we know it can all change quickly with thyroid.

I wish you all the best bev have a great xmas

C xx

You aren't converting t4 to t3 well, so you'd probably feel better with some T3 or an increase in levo to take your free T4 over range and your free T3 higher in range

Thanks angel my endo did say to maybe add a little t3 but i thought i would see the rezults firzt from 6 weeks on levo only but maybe i should try...how much t3 angel do u think? or how much levo should i up it to on 150mcg at the moment.

Thanks angel for ur reply

I'd just try adding 1/4 of tablet of T3.

Thanks angel will do 👍

Hidden
Hidden
in reply to Angel_of_the_North

I just saw this. If someone is a poor converter, is it not a bad idea to add T4 as that will only increase the conversion of T4 to reverse T3 instead of free T3? Not sure, hence my question.

Angel_of_the_North
Angel_of_the_North
in reply to Hidden

No one knows. If your free T4 is over range, you will probably have high Rt3, but you might not. In any case, rT3 has a very short life and is converted to T2 (which might possibly help restore insulin sensitivity). rt3 does not interfere with T3. "everyone" converts more T4 to rT3 than T3 (about 60:40). if you have/take too much T3 (or T4), you'll convert more T4 to rt3 to slow you down. You can't really tell if you are a poor converter until your Free T4 is well up in range, and some people seem to need free T4 higher than others, it's far more individual than text books would have you believe.

Hidden
Hidden
in reply to Angel_of_the_North

Yes, I'm slowly beginning to realise there is theory and there is reality...! Interesting post, thanks! Some alternative health care providers claim rT3 dominance causes all sorts of problems, but the more I read about it, the less I believe it...what you say makes more sense to me.

Angel_of_the_North
Angel_of_the_North
in reply to Hidden

Too much rt3 might show that you have problems, but not what the cause is. Nothing is ever as simple as it seems at first sight. If you don't have a thyroid (after TT or RAI), taking no T4 will obviously reduce rT3, but is that actually curing the source of the symptoms? Probably not/Perhaps/Yes/No/No idea depending on who you listen to.

Hidden
Hidden

Hi Christinah61, first of all - I applaud you :) You made it and your bloods look great. Now, if you feel good as well - that's what is the most important. I am not doing well on NDT for a long time now and I will be most likely changing to Levo only in a couple of weeks when I see my endo. If you feel good, don't change anything, it's been only 6 weeks. I would persevere and wait. There is no rule as to what FT3 you should have to feel good, same with FT4, it's an individual matter -- you might feel amazing with low Ft3, with high FT3, with mid-range etc. Your thyroid outputs abut 7-10 mcg T3 on its own, the rest is in your cells from conversion from T4 (20%). Your bloods won't say how much you are actually converting as a full picture as you don't see T3 floating in your bloodstream in reverse if that makes sense. If you take T3 (in NDT), this will float in your blood until your cells take it. Very different process. Go by how you feel I think. Well done :)

Hi cupofcha

Thank you for a lovely reply, yes it is all trial and error and I realise that with thyroid problems but hey I feel so much better with my levo and I am not going to rock the boat at all, plus my purse is feeling a lot better without the cash going on private NDT..... I wish you all the very best with your THYROID journey and hope you get relief as I have for the moment anyway ...lol... as you say its only been 7 weeks, so watch this space.

Take care

Christinah61

Hidden
Hidden
in reply to Christinah61

Hi Christina :) How are you feeling? How has it been for you on levo only? x

Christinah61
Christinah61
in reply to Hidden

Hi cupofcha how are you ...i have been feeling well and i think the reason for it is ivs changed when i take my levo for 40 years i took it morning and i always had terrible nausea however i decided to change to 11pm - 12pm at night hey presto nausea gone .....cant believe it i used to have to take daily anti sickness tablet to get through also i now take 150 levo one day next day 175 and feeling much better...still have off days muscle aches tiredness etc. But much better than i was. I have bought tr mann ndt from thailand but not opened them yet cos im feeling ok and dont want to upset the apple cart ....how r u ? And whats going with you ?

Sending u all my best x

Christina

Hidden
Hidden
in reply to Christinah61

So glad to hear it! I hear some people prefer taking it at night, brilliant!

Are you planning to try T-man?

I have found out that my levels of free t's are dropping because of reformulation of Nature Throid...:( I have lower level on same dose months later. I am underactive, increasing NDT by 1/8 again as per my endocrinologist, not sure I should worry about dropping ft4 levels while ft3 increasing. I get more energy, but I am also tired, which doesn't make sense to me, finally not crying, no major PMS, but I gain weight for the past few weeks, feeling extremely bloated. My bit d plummeted and so did ferritin. Something tells me I should move back to levo for stable levels since I convert well...and maybe add a bit of t3 to it if needed. But I am afraid of transitioning. I get always weird side effects for weeks and it affects my job etc...also, not sure what my levo dosage should be. Endocrinologist thinks 200 mcg, I think 125 mcg, I'm on 2.5 plus 1/8 grain

Oh bless you ....nature throid for me was great for 2 years then in april last yr i got a new lot and i went downhill v quickly i spent most of our gorgeous summer in bed feeling terrible ...so had to do something tried increasing the dose but didnt do anything for me..so decided to go back to levo i still feel i have room for improvements and dont feel im there yet 65% maybe and want to feel at least 90 so in time i probably will try 1 tablet of ndt and maybe 100mcgs of levo and try it out see what happens .....i wish you a safe and happy journey and hope you 2 find your solution keep in touch xx

Hidden
Hidden
in reply to Christinah61

Hi Christina - how are you doing? x I have swapped my 2.5 grains and crumb ;) of NDT to 150 mcg T4 about 5 days ago. Did you feel any changes during your transition? I feel the first few days I had a lot of energy and now it's the opposite, possibly lack of same amount of t3 and body still absorbing t4. Wish me luck, but today hitting the wall (I'm absolutely freezing, very fatigued and feeling low, hiding at work in a meeting room, trying to survive the day). On a good side of things - my legs don't feel heavy anymore and stiff!

Christinah61
Christinah61
in reply to Hidden

Oh bless youxx no i didnt i seemed ok but i still have the odd days were i feel like ive had a couple of rounds with mike tyson and the odd nite of no sleep but im doing ok xxx

Hugs and kisses to you xxx keep ur chin up xx

Hidden
Hidden

So encouraging, thank you so much for replying :) xxx I am so happy to hear you're doing okay! I will post here in a few weeks again, my endo wants me to check my levels in about 2 weeks and a bit (every 3 weeks). Hoping this is the right way for me! Maybe this is one of those days - I actually told my coworker that I when I woke up I felt like I was punched by someone in the face :) so Mike Tyson analogy applies to me too! :) take care and talk soon xxx big hugs and kisses!!!

Christinah61
Christinah61
in reply to Hidden

Xxx big cuddles youll be great xx take care keep in touch xx

Hidden
Hidden
in reply to Christinah61

Me again :) I see that you had experienced some dizziness and lightheadedness at 2 weeks of taking levo. It is happening to me too, at 10 days, since yesterday. How long did you experience it for? I just feel sort of tired wired and my sleep is off. Did bloods just in case, results in tomorrow xxx

Hi yes that was when I first started and it went after a few days. Good Luck xx you will see when your results come in. xx

Hidden
Hidden
in reply to Christinah61

Thank you for reassurance :) I will persevere! Xxx

Hidden
Hidden
in reply to Christinah61

Hi Christina, I got my results and they are not good :( my TSH has gone up to 0.1, which is fine, ft4 is over mid-range at 15.6 (9-19), but ft3 is on the floor at 3.00 (2.89-4.88). Now, I tested it 9-10 days after dose change, so I'm wondering if it could be simply too early? I have better day and worse days, today is bad (stiff muscles). Pain is gone and I sleep like a rock, but extremely tired.

Christinah61
Christinah61
in reply to Hidden

Maybe bloods were a bit early.

Im sorry to hear your not good at the moment. Give it time rest up sending my love xx

Hidden
Hidden
in reply to Christinah61

You might be right. I'm going to do another blood test at 3 weeks just to see if anything changed. I have a box of t3 if I need to add a bit. Either way it's better not being on NDT. Starting a new job in 5 weeks so a bit nervous about the outcome of this! Xxxx take care and will post again in about 10 days! Thank you for your support x

Christinah61
Christinah61
in reply to Hidden

Oh bless you xxx good luck for the new job. Ive just come back from the doctors ...never go unless i really Have Too ...this time not thyroid related doc reckons ive got frozen shoulder ...had left upper arm pain for 2 mths its been agony cant sleep cant dress cant brush my hair its awful..cant do bloody anthing .lol ..anyhow docs got me seeing a orthopedic surgeon on 10 april ...so well see.. hang on in there cup...keep smiling ...it will all work out sending big hugs xxx

Christina

Hidden
Hidden
in reply to Christinah61

Thank you so much! xxxx

This sounds awful :( Please keep me posted...have you tried physio for the time being? Sorry to hear it :(

I will do, you really give me hope, thank you! xxxx

Have you seen all the troubles in getting NDT now and big problems with there ingredients ...got to be honest im glad im back on levo...still got 1000 tmann ndt unopened ....not tried them as im doing ok on levo

Hidden
Hidden
in reply to Christinah61

I haven't followed it since January/February, but like you, I am happy to be back on levo (and possibly on synth t3 if needs be). I was just so sick of waiting every month to find out if they have NT in stock or not, is it the same pill or reformulated...and of course, it made me sick anyway.

So many people feeling sick on it...dont know just glad were of it xx

Hidden
Hidden
in reply to Christinah61

Me too, the right way xxx have a lovely weekend

Hidden
Hidden
in reply to Christinah61

Hiiii :) a quick update - my aches and pains went away! Not so stiff anymore either, hair is getting a bit better. My temps are normal! Now just waiting for my digestion to improve and sleep is weird, I wake up a lot at night, mood is a bit flat sometimes, but no crying and huge meltdowns, I will give it as much time as needed. Maybe this info helps someone who's transitioning - I'm on my 17th day of levo after taking anything from 1.5-4 grains of NDT. I don't feel spaced out anymore. Xxxx

Christinah61
Christinah61
in reply to Hidden

I told you ...i still get the nights of awoken sleep ....im so glad things are getting better especially with the new job xx hugs and kisses xx keep it up

Christina

Hidden
Hidden
in reply to Christinah61

Thank you so much Christina - they definitely are. I felt worse when I had high t3 and low t4, so levo has to be the way for me! I feel more stable than ever xxx thank you for your support! xxxxxxxx kisses!!!

Hidden
Hidden
in reply to Christinah61

Hi Christina, I have some news - my bloods came back and after 3 weeks, my levels look much better :) FT4 = 17.6 (9-19) - went up from 15.6, FT3 = 3.64 (2.89-4.88) - went up from 3.0, TSH = 0.03 (0.35-4.94) - went down from 0.1, so FT3 and FT4 levels similar to yours at your 6 weeks of 150 of levo. I am not sure why my TSH is so low on T4 only, but hey ho :) I will check these again...I have a feeling my ft3 and ft4 will change over time!

Yeah brill your results look good xxx i told you didnt i.... i knew it i bet your feeling a bit better now arent you xxx i am so glad for you..keep going keep your vitamins optimal and keep going ...even if you get the odd day that you dont feel good because with this disease ..it happens just remember your doing ur best for your thyroid..and the Big Reason were not having to worry about were the next tablet is coming from or how much its going to cost us and most importantly whats in it !!!🤗😁👍sending big hugs and big kisses to my mate cupofcha xx

Hidden
Hidden
in reply to Christinah61

Oh so much better and this is just a start. I feel like a human again and I will never touch Nature Throid again. Honestly love the fact I take levo in the morning and forget about splitting , availability etc. My vit d shot up from insuffficient to almost excessive and ferritin is going up and up, I'm delighted! Huge hugs for you Christina xxxxxx let's keep in touch on here!

Christinah61
Christinah61
in reply to Hidden

xxx will do xxx

Hidden
Hidden
in reply to Christinah61

Hi Christina, how are you doing? I tested at 4 weeks of 150 mcg T4, my TSH dropped to 0.01, ft4 is in the upper quarter range and my ft3 is below mid-range. Wondering if I should increase by 12.5 mcg since I still have a lot of symptoms and ft3 is lowish. I also have 2.5 mcg t3 tablets, which I tried adding the last couple of days to see if it changes anything and it does already regarding my mood, but I would prefer to increase levo. Seen an article by Dr Toft who would elevate ft4 I'm his patients in order to raise ft3 to over-range and claimed it was safe to do so as long ft3 is not as high as 1.7 (1-2.2). How are you feeling now? How do you feel after your increase and have you checked bloods on that? Xxxxxx bug hugs

Hi cupofcha

I am ok thank you just getting over a chest infection...my ft3 was low as well so instead of adding liothyronine t3 i went up to 175mcg on alternate days ...so 150 one night then 175 next and so on not tested since mid jan so i will get a BH kit this week and see what nos look like but wanted my cold infection to go first it will be 3 months mid april ....i dont get on with t3 ...but i wish you luck experiment with small doses and see how you get on.

Hugs

Christina

Hidden
Hidden
in reply to Christinah61

Oh sorry to hear that, hope you're doing okay x I might do the same, t3 is making me fuzzy and dizzy currently on day 2 :( so maybe t4 is the way to go to get that ft3 around mid range. My hair got better on t4, my skin is soft, but started to get a bit puffy and my neck swelled up... Take care and please let me know once you get the results, would be interesting to see how this pans out for you x thank you for responding.

Hidden
Hidden
in reply to Christinah61

Hi Christina, how are you doing? Hope your infection has cleared up! Is t4 working fine for you? Xxx

Christinah61
Christinah61
in reply to Hidden

Hi cupofcha i am fine i have just recently uped my levo to 175mcg i have always been on 150 and just felt tired and achy and i dontvwant to speak to early but im feeling a bit more like my old self with more energy. I will be taking my BH bloid test next week i will of been on lwvo 6 and a bit months so it will be interesting to see my numbers...any way how are you ? And what are you taking and what dose ...cos i saw a post from you saying that you werent so good ....need an update plze

Sending hugs and lots of love xxx

Hidden
Hidden
in reply to Christinah61

Oh that is really amazing news, super happy for you xxxxxx absolutely, it will be great to see what they are, please post them , I am curious :)

Yeah I have been up and down. I might have jumped the gun too fast on dosing, but since started Levo my weight has gone up from 65 to 70 kilos in 9 weeks, started to look and feel very hypo so at 5 weeks I went from 150 to 155 mcg t4 and felt overdosed for a week, had to skip doses to be able to go to my new job...I had the fatigue from palpitations and overmedication, it was terrible. So reduced to 137 and it's awful. Now going back to 150, but not sure I should be adding t3.

I do think you jumped the gun to quick...i have waited for 6 months on 150 even though i have felt fatigued achy muscles etc..on and off.. ive always been told that it has to controlled regularly the same dose for at least a good while before playing around with doseage up or down. I have hashis so you have to be careful otherwise you undo all youve done xxx we are all different what suits 1 doesnt suit others so i wish you good health and hope you get it right very soon and feel better. God speed to you xx

Hidden
Hidden

Hey Christina, yeah, I am mad with myself I didn't persevere, but I felt I was getting worse and worse in terms of how I looked, felt, my cholesterol was rising, I had hypoglycemia etc and then suddenly I was overmedicated or had a Hashi attack...I will look after myself now as much as I can but so far my job has been taxing a little, been coming home after 7 pm each day and travelled to US and back last week :( x

Oh bless you got to say on your picture of you ..you look very much like me especially when i put my glasses on...anyhow persevere plze and take care be kind yourself and remember Its just work ....dont let it take over ur life xxbig hugs xx

Hidden
Hidden
in reply to Christinah61

I can see from your picture that we look similar . I am persevering x the only way now xxx also had a viral infection recently, on my trip to US with work, it was very challenging , but got through it somehow xxxx hugs xxxx

Hidden
Hidden
in reply to Christinah61

Hey Christina, hope you're having a lovely weekend. I have a quick question. Since you have gone to Levo, have you seen your weight going up? I seem to have gained about 8 pounds in 10 weeks. I am back on 150, still undecided if I should add t3 at all. You did you can't take t3, did you have a bad reaction to it? Xxxx hugs

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