Does anyone actually feel well on just levothyroxine???

It seems the more I read the more it becomes apparent that actually no one ever feels well just on Levo? It's such a travesty!

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  • I agree! I'm not sure if I ever feel normal anymore, just get used to feeling like shit πŸ€¦πŸΌβ€β™€οΈ But stay positive lol... easier said than done xx

  • I watched doctor in the house the other week the women had diagnosis of hypothyroidism fibromyalgia and CFS he made dietry changes and weaned her off pain killers took her off gulten and diary she had hashimotos sufferer written all over her and he talked about energy not getting into cells. Not once did he mention the levo she was on or manage that I'm convinced he put her on T3 but wasn't allowed to say!!?

  • Oh really!!!!! I'm so debating weather to buy some T3 and self medicate as doctors are dead against testing & prescribing!!! Why is it sooo expensive for them πŸ€·πŸΌβ€β™€οΈ

    I'm just not sure of the effects if I take it πŸ€”πŸ€”πŸ€”

  • Lisa, what is stopping you? You may feel much better. If you post a new question asking where to get T3 from, you will get some private messages with information. This is a link to a really good website, which includes information on self-medicating. I never felt well on Levo and have been self-medicating with NDT since last year. I feel much better.

    thyrophoenix.com/

  • I just wasn't sure if I over medicated then everything would go a bit haywire as I've no experience with T3 as it's so bloody rare πŸ€¦πŸΌβ€β™€οΈ Do I just start on 25mcg and see how I go????

    That's good to hear you feel a whole lot better:))))) xx

  • Lisa, the starting dose depends how much levo you are taking and what your recent blood results are. You would probably need to get your FT3 done as well to see where that is, but GP's wont generally do the FT3 test. Have you had your folate, ferritin, B12 and D tested. These can be compromised with an under active thyroid. Also, have you had your thyroid antibodies tested - TPO and IgA? If you have autoimmunity, giving up gluten helps.

  • Hello, yes had all the tests a year ago & awaiting more now, had antibodies last year so hashi's xx oh I had low T3 😩

    Thankyou xxxxx (posted results as well ) x

  • Lisas_Tired,

    25mcg T3 is equivalent to 75mcg Levothyroxine so you should buy a pillcutter and quarter the tablet and start with 6.25mcg to see how well you tolerate it. You will need to know your FT4 and FT3 results to determine whether to adjust your Levothyroxine dose.

  • Ok Thankyou, will be speaking to the doctor 2moro as well so will discuss with her also & be getting the rest of my results xx

  • Please can you tell me where to get T3 - i am so confused about what to do - i am on Levo 50 and feel dreadful and it is getting worse and worse. Thank you

  • Laraine write a new post. Asking the T3 question have you posted your results in here for people to advice?

  • My TSH is 4.84

    My T4 is 16.2

    I dont know my T3 as it was not tested

    What should i do next if I am still utterly exhausted?

  • I suggest a full thyroid panel from medichecks or blue horizons including vitamins and antibodies and post your results on here medichecks offer discount on Thursdays and the people on here can offer lots of advice and support. There are far more knowledgeable people on here than me but with a TSH that high if you're on levo it's nonwoven you don't feel well!

  • The 'energy' need in all our receptor cells is T3 if hypo. Even if we don't have a dysfunctional thyroid gland our body has to produce T3 otherwise we've had it ! :)

  • I have an aunt and a mum who have felt like crap for 20 years on Levo one blood test a year for TSH and that's it. My mum goes with pains and symptoms and they say it's because your fat soul destroying :-(

  • Have been OK but trying an increase at present because of detiorating blood test results and a return of some symptoms. Then again at over 70 age plays a part in how you feel - how to tell what is age related and what is hypo.

  • At just turned 45 I can't accept it's an age thing? And as someone who was always highly active the pains I feel now are definitely brown to something not being right

  • I'm 41 and that's been me for years: been taking Levothryoxine for 15 years plus and am now at the stage of it working so well *sarcasm* that I'm in and out of bed with chronic pain all day.

    It hasn't worked well for years, but these past two years have been awful. Keep saying to my GP that my thyroid isn't right as it's all the hypothyroid symptoms and I can just FEEL that's what it is, but all he's been doing is TSH checks and laying on the Tramadol!

    So I've taken the plunge and paid for private blood tests for T3 etc from Medichecks (cheaper on #thyroidthursday) and have ordered NDT and T3 online from abroad.

    Im hoping the blood test results and the meds all arrive at similar times, so that I don't have to wait to start self-medicating.

    It's a path I'd prefer not to take, but my GP and the NHS have given me no option: I can't go on like this, unable to walk or stay awake (even without painkillers). I've lost years of my life - the last two in particular - and it's time to take back control for myself.

    Thanks to the guys on this forum, I already know my GP missed vital signs in my NHS blood tests that my body wasn't absorbing the Levothryoxine because my Ferritin levels were criminally low, and so to address this deficiency and my folate levels and B12 too before I start on the T3 or NDT.

    I have no doubt that if I'd shown these NHS test results to everyone here years ago, I wouldn't be in such a bad way today.

    I have every faith in the knowledge of the Admin and experience of the various members of this forum, and wish I'd found this site beforehand.

    Good luck in your journey!

  • You just sound like me. I'm 15 years and fr the last 2-3 have felt awful. It's taken over my life ever since raising its ugly head. And I feel poisened on the Levo. I was up at 200mcg at one point and my head was swaying felt felt shocking so I dropped cur a pill in half and dropped it to 187.50

    I had an appointment with my Endo about 3 weeks ago and I went harmed with a box of T3 and all my private blood test results I had had done with medichecks. I didn't know what response I was going to get. I put the T3 on the table and his eyes lit up and he asked where I had got it because lots of his patients can not get hold of it. Anyway he dropped the Levo to 150mcg a day and introduced 12.5mcg of T3 so far I'm not feeling too bad. I've got breathing problems at the moment so can't do a lot and that's getting me down but been investigated, my GPS given me Omeprazole and thinks it could be to do with acid reflux ha ha I personally don't coz no improvement but that's another story!!! So if it wasn't for all these other problems I'm sure I would be feeling much better. I must add I also now have perrimenopause mixed in there too and have had bad anxiety for a long time but I've managed to calm that down. Hopefully he will up the T3 when I go back and I will feel a lot better

  • Go you Endo! Amazing. Great response. So pleased you're going to be monitored properly. My GP won't even refer me to an endocrinologist!

    Please let us know how you get on: I'm approaching the perimenopause too (even asked GP to test last year, but of course he didn't think to also check my thyroid T3 or T4 - which was all the symptoms I was describing), but I'm not there yet.

    In terms of anxiety issues I reckon being on the right meds will definitely help to some degree. Otherwise, have you tried Mindfullness meditation? I'm addicted to the Headspace app; use it a few times a day. It's AMAZING and I highly recommend it.

    Also suggest buying the app through the Headspace website (rather than the Apple or Play app stores) as it's always cheaper going straight to source for apps as they don't have to give the big guys a cut.

    Hope the reflux improves and you get your T3 level sussed. Fingers crossed!

  • Hi I bought a pot of magic hormone cream and that's lifted the anxiety. 7 GP at my surgery wanted to stick me antidepressants and each time I said nooo. I knew it was caused by something either thyroid or perrimenopause. So I'm going for perrimenopause because the cream as really helped. Thankyou for your reply. All the best to you also πŸ˜€

  • Angela, I forgot to ask; have you felt better the past 3 weeks on the T3 or is it still too early to tell?

  • Hi Slightly more energy and feel quite refreshed but I think everything else on top isn't helping. I'm going back to see him in a few weeks so maybe he might up the dose. I've already told him if T3 is no good I will be trying NDT he just said let's see how you go in with this first.

  • Treepie, feeling ill and feeling old are not the same thing.

  • True,but joint pains can be from wear and tear and getting tired from ageing the effects are the same.

  • Very true but mine feels very much muscluar fatigue when I have done nothing to cause it,

  • I'm with you on that one! This is exactly what I have, pains in all muscles. What I want to know is should i be increasing my ferritin to get the energy taken up into my muscles?

  • My ferritin is/was slightly over range in my last results but I think my other Vits still need work? Have you posted your results on here Lulu?

  • Yes I have and been told by members that although in range (except for my Vit d which was 30 at the time of first test) need to be near top of range for b12 folate ferritin and all b Vits. Am supplementing with complex b, b12 and mk2-7, and Magnesium Citrate and intend to add in ferritin next

  • Mk-7 I meant!

  • Have to say I had a couple of good years on levo, down the gym 6 times a week and was as fit as I'd ever been, so I assume it's a conversion thing for me.

  • Have you got Hashimotos Colin?

  • Claire, Colin won't see that reply, because you didn't click on the green 'Reply' button.

    Actually, it's only a small percent of people that don't get on with levo. The majority of hypos do, but you won't find them on here, for the most part, because they're off living their lives. It's only us odd balls that need a forum to help them get well. :)

    Doctors have been taught all wrong about thyroid, and that's the problem. They have been taught that levo is THE gold-standard treatment, and not to contemplate anything else - in fact they have been taught that the alternatives are 'dangerous'! It's just a marketing ploy. But, there are other brands of levo, if you don't get on with the one you're taking; there are many brands of T3 (levo is T4) and many brands of NDT, which contains T4 and T3. But, which one is going to suit you, nobody knows. I'm afraid it's just a case of trial and error, to find the right form of thyroid hormone replacement, FOR YOU. :)

  • Thanks grey goose can always rely on you to come back with useful information :-) I think I was more having a rant lol I've ordered thyrogold and some T3 I just hope they arrive soon!

  • You're welcome. :)

  • Clairewalker751,

    My sister and 3 friends are fine on Levothyroxine. It's only me out of the 5 of us who requires T3 in addition to Levothyroxine.

  • I wonder greygoose if the majority of those on T4 are actually doing well, or if it is just a case of the GP not accepting that any adverse affects are not related to the condition or the T4 itself. I suspect that there are thousands of people 'out there' that don't even realise that it is the T4 that is causing a lot of their problems, as the GP's blame the 'symptoms' on everything but.

    I fought with T4, trying to make it work, for 20 years, looking back now, I feel downright stupid for putting up with the poor treatment for all those years. In my defence, I did look for information, but for many years the only 'info' I could find was a small booklet issued but the BTA. It took years of searching and access to the internet before I found the Dr's Lowe, Skinner, Peatfield et al. And of course we were brought up to always put so much trust in our Dr's.

    For a long time I have suspected that there are thousands out there struggling too, as I've come across so many people, in my own life. However, having found this forum this year, I realised that this problem is massively more widespread that I'd thought, and I suspect this forum is only the tip of the iceberg.

    My point is that I suspect that many more are not doing well on T4, they just haven't realised it yet - their Dr certainly won't admit it... especially in the current climate. It would not surprise me if it turns out that very few do well on T4 mono therapy. They may initially, but as Hashi's causes 90% of HypoT in the UK, and I think, from my own experiences, and what I hear, read etc, it's nature of fluctuating antibodies, makes it so hard to get a diagnosis, leaving thyroids irreparably damaged, I reckon, eventually most people will find T4 not converting well, as a damaged thyroid struggles.

    Only time will tell.

  • That, we will never know. But, I have personally met people who do well on it, provided they're given enough. And, I think that's half the problem. Doctors are so terrified of a suppressed TSH, that they refuse to treat adequately. It's a multi-faceted problem. But, I don't think a blanket denial that levo only 'works', helps anything.

  • I too know people on T4 and who do well, I have come across a lot more that don't. I think we agree on the problem is in the way in which Dr's lack understanding and hence mis-treat thyroid conditions.

    It is not a blanket denial that levo only works, it is a blanket denial that 'Levo only' works for all. Possibly for most.

  • All I know is my mum and my aunt were diagnosed over 20 years ago and never been well and have been given various other diagnosis and medications along the way, it's only since my diagnosis in February and this brilliant site that I've begun to realise they've been given levo and forgotten about I think there are many out there struggling without even making a connection to Thier thyroid or the meds.

  • Yes, I have Hashi's, as I said no problems at all for a few years, then a gradual decline until I felt really bad and was getting nowhere with my GP who just nodded his head and suggested nothing. Now on 1 grain of NDT and 25mcg T3, when I told my GP last Christmas I was self medicating he just said theres no point in him seeing me and referred me to an endo which I will see in about 3 weeks time. I'm currently going down the road of trying Kefir milk and try and repair the damage to my gut caused by leaky gut. I'm hoping if that works then maybe I could give levo a go again and maybe I could convert again normally.

  • I do. I've felt fabulous on it.

  • It's really good to hear that someone does it gives me hope! :-)

  • Well, my wife does after nearly 50 years on T4 only (125-150). I think a majority of patients do OK, but just how big that majority is, is a moot point. The minimum fraction of patients who don't do well on T4 only is 10-15%, but there may be a whole lot more who have nagging problems that they soldier on with. T4 does work but not for everyone.

  • I was of the opinion that I may need a bit of T3 added to levo.

    Since my increase to 150 mcg 2 wks ago I am feeling very good.

    It'll be great if that continues as I want an'easy' life πŸ™„. TSH already below range but GP satisfied with info I have give her. Am going to stand my ground to keep dose if I continue to feel well.

    This illustrates 1 of the many problems, keeping people ill with a low dose for the sake of TSH number.

  • My TSH is slightly surpressed and my T4 levels are good and T3 is 4.5 (3.1-6.8) so I doubt the GP will agree to a dose increase however I'm led to believe that lots of T4 sloshing around can cause rT3 so don't thinking upping my dose is an option? I was very hopeful to begin with on Levo as I have had significant improvements but I want to be active and I can't seem to achieve that on levo?

  • Clairewalker751

    My TSH was just below at 0.18, T4 3/4 way, but T3 below half way.

    I took evidence to GP along with pvt tests. She is receptive though which helps and I know not all are.

  • What's Pvt test? I'm like yourself have sorted out diet and supplements etc

  • Bloods with TSH ft4 and ft3 😊

  • I've been working on getting her to accept TSH doesn't matter it's FT3 that does.

  • Can I ask what your ft4 and T3 were before you increased your dose to 150 solstice?

  • I replied in one of your other posts as my numbers very similar to yours. Really.

    On phone just now so a bit tricky to add 😣.

    Prob now will be suppressed TSH and reassuring GP not to panic. But she responds well to the research I for her.

  • I have wondered whether to go up slightly have bought a pill cutter so could go from 125 to 137 and see if that helps?

  • Yes actually I have promised that if I get any over medicated symptoms I will reduce. I have a 100 and 2 x 25.

    I was a tiny bit anxious at increasing but I feel so much better.

    But I realise we are all different and so what works for some won't for others.

  • I darent go to 150 from 125 as my free thyroxine is 20.55 and top of range is 22.00? But could go up to 137 by splitting my 25s and see if I feel any improvement?

  • If in doubt post another question as in,should I increase levo or try T3 or NDT.

    Just pulled out my results 22nd june:

    TSH 0.11 (.27 - 4.2)

    FT4 20.4 (12 - 22)

    FT3 4.4 (3.1 - 6.8)

    I can only go by my own experience and feel very good. But i may get to 7 weeks and find that all changes.

    It is such an individual thing.

    Have you got Dr Toft's pulse article? Item 6 talks about this circumstance. Email Louise Roberts at TUK.

    I know it's really hard to know the best path to follow and I may yet need something else. But feel this is worth trying first.

    😊

  • Thank you solstice and you're right your last levels are almost identical to mine so I'm going to give it a try and see how I do, I do have Dr Tofts article so will read it again like you say it's worth a try especially as the NDT and T3 I've ordered are not likely to arrive anytime soon? I'm concerned the T3 won't arrive at all? I've already spent a fortune on Pvt and supplements so could do without the extra expense!

  • According to all doctors I have seen since I was diagnosed with Hashimoto's 17 years ago, with the exception of the so called Hertoghe doctors in Belgium, everyone does indeed recover and end up symptom free on T4 only drugs...interestingly enough, no doctor who is hypothyroid him- or herself has ever claimed this. The Hertoghe doctors all seem hypo themselves, and most if not all of them take NDT.

    So, all those doctors who claim that T4 only is all you need and should feel well on have no idea what they are talking about because they have never been hypo themselves and have never had to fight problems such as low conversion of T4 to T3, resulting in hypothyroidism no matter how good your TSH and FT4 levels look...in fact, most doctors seem unaware of the importance of FT3, some even to the extent of ignoring its very existence...!

    Since a healthy thyroid gland produces at least five hormones, I've never understood why replacing just one of them would be enough and even preferable to taking all five, especially in people who have had their thyroid glands removed. The idea seems to be that T4 will magically convert to all those other hormones...I agree with what Grey Goose says about doctors being taught that anything but T4 only is dangerous.

  • I've never felt well on levo I've been taking it since 1993, i have hashimotos disease, I've asked my endocrinologist to change my meds, NDT and t3 always the same answer " we only treat with levo , Its frustrating , can anyone tell me where I buy t3 as I can't get on prescription.

  • I can't say I've not felt real improvement on levo because I have tbf however I was someone who camped, ran, walked up Snowdon for fun :-( neurologically I definitely function better on levo can hold down a job and manage the housework (just) and walk my dog once a day but my body really aches, neck and shoulders in particular! if I exercise I crash!! And need almost complete bed rest for a week my body temp rarely reaches more than 35.5 my resting heart rate never over 63 so I function and for that I am grateful but it means i have to live a very sedentary life style :-(

  • I am definitely feeling better on Levo (only on 50 mcg right now!) than I did. Also, you've got to remember your other nutrients need to be at good levels too. I am currently working on my ferritin, I figure that's why I'm not 100% better yet. There are other little niggly things going on, have got some ear hum now that I never had before, but then I'm not yet on (in my opinion) the optimum amount of Levo as yet. I also went gluten and dairy free, both those things helped a LOT. So I'm hopeful that all of those changes will largely put me right, and hopefully I don't need to delve into the uncertainty of trying to source T3 or NDT.

  • Glad you are feeling better! Thanks to this site i quickly cut out gluten and diary all my nutrient levels are good I I've read root cause hashimotos protocol and the autoimmune solution I am doing all the right things and paying privately for blood tests I have no inflammation, have worked on parasites candida and sibo have done a leaky gut protocol (still do) I started on 100 am now on 125 and starting and increasing definitely helped but I feel like I just function I don't feel healthy and as you can probably tell I'm also frustrated lol

  • It's hard after doing all that you've done, that you're still not 'right'. Must be incredibly frustrating. I guess all you can do is bite the bullet and try out T3 or NDT and fingers crossed that will work out. :)

  • Thanks jahdzia that's the next step it's ordered and I'm hopeful, I hope your recovery continues too!

  • Clairewalker751 You describe exactly where I was at end of May. We went away for a week and that was hard. Couldn't manage evenings out or days out. But nice to relax 😊 and vit d helped. At that time I believed I would go the T3 combi route. I may yet still but the change to my life is significant since this increase in levo. So am watching and waiting and yes it's very frustrating - I am 6 months almost to the day since starting levo at 75.

  • BTW am Hashi and have overhauled everything vits, mins, eat liver, cut out all grains, nothing with additives, no alcohol as can't tolerate it. Determined to feel good again so won't be going back to old ways.

    BTW I used the need to exercise as reason for increase as well.

    Which ever way you go, wishing you the best πŸ˜€

  • Hi Claire- I too have Hashis and have recently found out I have a parasite, SIBO and candida. I was wondering how you treated yours? My nutritionist has put me on things like black walnut & wormwood and uva ursi herbs and I'm about to start an 8 week programme of taking them. Did you follow Isabella Wentz's protocols? Thanks!

  • Pretty much I did the Amy Myers 30 day protocol in her autoimmune solution book, I took Ovex for parasites too don't think I've fully resolved my gut issues though think I have an intolerence to something but can't figure out what ? Only herbs intake are ashwaganda tulsi and triphala?

  • Thanks Claire- really good to hear from someone with similar GI issues who's treating them. I had a Genova GI test done which revealed so many issues. I'm hoping that doing this 8 week protocol that my nutritionist has advised will attack them. She's an AI specialist so I'm keeping my fingers (and toes!) crossed. Hope you feel better soon.

  • Do you think the Geneva test is accurate? And would you share the name of your nutritionist in private message to me please?

  • Yes I do and my 2 sisters.

  • That's good to hear Bantam :-) do you or your sisters exercise much if so how do you feel after?

  • Since I started levo I have lost around 15lb in a year

    But the effects off it the fatigue hair falling out eyebrows pubic area

    I'm depressed all the time no energy at all when I take it on a morning it whacks me out and I'm back to sleep and I just feel drained

    Lost my appetite

    Severe constipation

    Numbness in arms

    Ringing in my ears

    Hot and intolerance

    Urinating a lot

    Periods all over and very painful

    Feet swell

    It's a nightmare I'm thinking of stopping my meds

  • I'm sorry it hasn't helped you. Apart from the weight which I haven't managed to lose any of, the constipation (I'm having the opposite a lot lately) and the periods which I am now done with that sounds just like me. I only took my first tablet yesteray though so that is unmedicated. I really hope I do better on it. Have they never offered you an alternative?

  • No they haven't I have doctors appointment 27th I have yellow tinge in my eyes too ..

  • I'm sure you will have already done this, but just in case it's been overlooked, have your GP run full blood tests including vitamin levels (Ferritin, folate, B12 etc) and check they're at reasonable levels with everyone on here once you have the results (your GP alone probably won't be able to decipher the tests as well as these guys here).

    It may be your system's deficient in some way and needs vitamin supplements to help with Levothryoxine absorption, as well as extra help elsewhere.

  • I'm on vitamin d 3.200 a day

    On vitamin c tablets chewable ones

    Vitamin b complex

    Vitamin a compound

    My liver enzymes always high

    Lymphocytes always out of range

  • That is not the levo causing that!

    Do you get all the nutrients you need? Vitamins a, c and d and the b's? Zinc? Selenium? Magnesium? Iron? Your body can't convert t4 to t3 if you don't have what it takes! Are you on a calory restricted diet? If you are, your body will turn t4 to rt3 instead of t3 and you'll be miserable.

    But you'll be even more miserable, and will eventually die a slow and horrible death, if you stop taking medicine.

    Use the internet to find out what you need, nutritionwise, and talk to your gp about having some blood tests!

    You might be low in b12 as well - try googling symptoms of b12 deficiency!

    Best wishes!

  • I'm a fitness coach

    Take all my vitamins .....but it's getting worser and worser is that fatigue its starting to take over my life

    Do you think I'm over medicated I'm on 50mcg a day ??

    Need some advice please

  • And zinc, selenium, magnesium a s o?

  • Well I have to say after being fit and healthy with no obvious symptoms and then being told I was hypo with a routine blood result saying I had a TSH of >50 Levo has given me 18 months of grief.

    It's taken me 18 months to get my dose close to being right and still I only feel 85% right.

    Being a Hashi sufferer doesn't help but I've accepted that I'll probably never feel 100% well again as I too have friends who are on Levo only and they're fine so I consider myself sometimes to be odd in comparison or even feelings of being an attention seeker if I talk to them about it.

    I've found if you talk to people on Levo who get on fine some of them think you're making things up, almost like a lot of GP's.

  • My 80 year old does well on it too and she does pretty hard walks and hikes. Only found out recently when asked her to sign campaign that she was hypo and was gobsmacked. She says she jogs along okay on it but was interested in the campaign and supportive of those that don't do well. Think it was a bit of a shock to read.

  • I like positive stories :-) my mum and aunt have been on it for years and never felt well mum can't lose weight I lost 14lb when I started levo and stopped exercising however despite no change in diet it's creeping back on. Seeing as my mum nor aunt are well I do wonder if we have something else going on ie poor conversion?

  • My son and I were doing well on Goldshield Eltroxin, but once changed to generic Levothyroxine, t has caused no end of problems.

  • What is this goldshield eltroxin j bee? Are you in the UK?

  • Yes, Clairewalker751 I am in UK, but unfortunately Goldshield Eltroxin is no longer available. Mercury Pharma Eltroxin is, but is nothing like Goldshield.

    After 3 days on Mp Eltroxin I could not walk and the left side of my head felt numb.

    It seems that anything that is good in this country gets taken off the market.

  • :-(

  • Clairewalker751 I fully agree with you! :-(

  • I was fine with it for 25 years. Only later in life did it stop working well. Need to try with it first a get the right level. T3 can mess you up if you don't need it.

  • Hi I too suffer with gad I have found that after also taking 25 mcg and ferrous fummarate tablets my anxiety is a lot better so much so I have stopped taking my anxiety meds . Give the tablets a go

  • No I don't but at medicine review all the doctors want to do is to reduce the dose so after a firm no we move on

  • No i sill feel tired out and other things

  • I have to ask the same question !

    Is there anybody out there who has fared better on t4 only .???

    I am being badgered by my oncologist to go on to t4 only but am so loathe to do so . I could just self medicate & buy my T3 from abroad but he is doing my bloods in 6 months time so am tempted to bite the bullet & just give t4 only a trial period .

    So would be very grateful to hear from ANYONE who has had a positive experience on t4 only .

  • Chungy,

    There are several people who have said up the thread they are well on T4 only. Most people are once they are optimally dosed which is why they don't need the support of thyroid fora like this.

  • I'm ok, pretty much, now that I get what I need, nutrition wise!

    Read e g "10 nutrient deficiencies every thyroid patient should have checked". There is a lot of info on the internet.

    Enough b12 made a huge difference. Many of us are low in b12, and a lot of the symptoms might actually be caused by that.

    The last thing was potassium, as levo depletes the body of potassium, and too little of it causes muscle weakness (-> muscle and joint pain), bloating and constipation!

  • Yes done well for 16 years without a thyroid gland. However a few bone issues along the way.

  • Sorry meant taking Levothyroxine!!!

  • Just relying on the medicine won't help...Inorder to control the issues related with hypothyroidism, diet plays a significant role as intake of cruciferous vegetables,cooked carrots,peach,strawberry,pear,dairy products even chocolates,caffeine contained drinks,alcohol,oily foods will make u sick (continuous throat pain and swollen of gland frequently).

    In addition, good sleep and light exercises is a plus point to hypothyroidism patient.I am diagnosed with hypothyroidism but I am very thin..1 percent of the phypothyroid population loses weight and it's so hard to balance weight as it always goes low.

    Lastly I would recommend stop those foods which are kept in refrigerator..Before having any foods make sure it's not refrigerated.

    Based on experience and research

  • I have never heard of cooked Carrots being a problem or any of the fruits you mention . Surely this is not applicable to all Thyroid sufferers ?

  • Tjc64,

    Don't believe everything you read, particularly when it comes to diet. When in doubt ask for substantiation.

  • Peaches, strawberries and pears are often mentioned. I don't eat them anymore.

    Soya is the absolute worst you can eat with hypothyroidism.

  • Ive done my research regarding diet and stick to a hashimotos protocol no dairy or gluten no processed food

  • That's what I do 90% of the time . Harder on holiday though

  • Yes much more difficult away from home isn't it! Lol

  • ariastyles gosh, that's quite a list. Where did you get that info from please?

  • Ariastyles,

    Avoiding goitrogens may be helpful for patients not prescribed Levothyroxine but it is not necessary once they are prescribed Levothyroxine. A good balanced diet is required there is no need to adopt the restrictive diet you recommend unless you have allergies to particular foods or food groups.

    If you are going to make these assertions please link to research substantiating your points. You could start with linking to why we should not eat refrigerated food.

  • Soy is not good, even when you are on levo.

  • I am one of those who does pretty well on levothyroxine alone.

    I consume cruciferous vegetables, cooked carrots, strawberry, pear (mmm, pudding coming up in a few minutes, pears in red wine), dairy products (cheese, yogurt, crème fraiche (goes well with those pears...), etc.), chocolate, love coffee, drink alcohol, and believe that some oily foods are essential. And I don't have a swollen thyroid.

    Elimination diets are sometimes essential. When they eliminate group after group of foods, they can become dangerous. It can end up difficult to gain adequate nutrition.

    Any individual might need to avoid specific foods, it is another thing altogether to make a blanket recommendation to 58,000 people who you do not know. Each one of those 58,000 might have different issues that require different approaches.

  • I've been on levoroxine for 29 years now and I'm ok

  • Until I joined this group last week, I thought it was just me that feels lethargic, cold etc even though I'm on the right dose of levothyroxine. Opened up a whole new world! Would really appreciate someone private messaging me details of t3/ndt. Thanks to all and the moderators!

  • I was diagnosed with hypothyroidism about 20 years ago and prescribed levothyroxin. After a few months while my dose was regulated I began to feel much better and my family reported that my mood swings had calmed (bar premenstrual). 20 years later, the doctor has adjusted my dose once (last year) but returned it to the original dose. I do still get the occasional headache, but I feel that may be more due to the middle brain damage that I sustained in a road accident 23 years ago (coma for 18 days and slight memory loss). But perhaps I'm abnormal in my positive experience with levothyroxine? I'm 64 years old now.

  • It's good to know some people do well on it! :-) maybe if I didn't try to exercise I wouldn't feel so bad?

  • Too much exercise allegedly can make your body convert t4 to rt3 instead of t3!

  • Yes I've read that too Brigette but I'm certainly not trying to do to much that's what's so frustrating I feel ok as long as I'm sedentary :-(

  • I try to get 20-30 minutes walks several times a day - that's what works best for me ☺

  • Hi Claire,

    No I don't feel like I'm taking it to be honest

    In the last 8 weeks I have put on so much weight

    I can't loose a pound!! 😒☹ don't no why I'm bothering to take the tablet. My GP doesn't listen

    KarollyπŸ™‹πŸ»

  • Take the advice of the good people on here Hun and hopefully things will get better

  • Thank you Claire

    πŸ™‹πŸ»

  • I'm fine thank you but I seem to be the exception here. My Dr. likes his Thyroid patients to be at the lower end of the range 0-4 for TSH I was 0.5 last time.

  • Mines 0.26 but still struggling :-(

  • I have been on thyroxine for over 60 odd years, took a lot of pushing by my mother to find out what was wrong with me as a child. She was just told she was a fushing mother, which of course she was not. Have since found out I have colitis which I control by diet, avoiding to much corn and wheat. But otherwise generally have felt alright on thyroxine, my Mother thought I could have been born with a underactive thyroid gland but no heal prick test in the late 1940's, it is all trial and error to find out what works for each individual. My Doctor once told me he thought I knew more about it than he did.

  • So interesting as I have no thyroid and have been on Levo for 16 years. All good except for a few bone issues (2 bionic hips). I also had ulcerative colitis which I healed through going on a VERY RESTRICTIVE diet. I lost too much weight but it did the trick .. in that I take no drugs for the colitis and as long as I don't eat lots of sugar or loads and loads of carbs (which convert to sugar) I have no symptoms. I am in late 60's and had thyroid cancer when I was about 52. Levo is ok for me as I convert T4 to T3 well. However I am aware I have no T1 or T2 so I am relieved when I am told others have done without T1 & T2 for years & years. I did want to try Armour or something similar for the T1 & T2 but I am quite well on Levo.

  • Hi Claire- the Genova tests were horribly expensive but the best thing I've ever done. I will pm you the name of my excellent nutritionist. The GI test discovered a parasite, SIBO, candida, low stomach acid, an inability to break down protein and long chain fatty acids and I added on a zonulin test for leaky gut which the test revealed was exceptionally bad even though I've never had coeliac diagnosed. She has put me on an 8 week protocol (started today) of lots of things plus I've been paleo for a couple of months. Again, the supplements made my eyes water and I haven't told my husband how much I'm spending but my antibodies were around 1300 and I'm determined to reduce them. My nutritionist thinks she may have found the root cause of my AI as the test threw up something linked to AI although there was so much to take in when we met last week that I can't remember which thing of the many problems it was!!!

  • Haha, husband doesn't know how much you're spending on supplements/ health appts/ blood tests etc. Story of my life, though I'd prefer a πŸ‘  or πŸ‘œ habit! πŸ˜‰

  • Thanks kipsy all sounds very much like the advice in the books I've read my antibodies were in the 100s too and on last check have more than halved, I basically followed the auto immune paleo but have wasted up a bit now have out nuts eggs and nightshades back in but I'm pretty sure I've not completely resolved my gut issues did you say your nutritionist prescribes NDT or T3?

  • No sadly she doesn't. She's much more AI than pure thyroid focussed too- for instance she's not aware of selenium boosting conversion. She has taken me off all 'normal' supplements such as B12 etc for 2 months as I'm not absorbing anything (she thinks) and I'm on very odd stuff like ATP fuel , biofilm defence and black walnut with wormwood etc. Etc etc. I'm prepared to give it a go as have so many gut issues. She suggested paleo back when I first saw her (May) which I'm following and she feels grains are so much worse than dairy so she's not too bothered if I occasionally slip with the latter.

  • I have relied on levothyroxine for 16 years as I had my thyroid gland removed. Generally I have felt great with loads of energy (slightly overmedicated), no particular weight gain but over the years I have had bone issues and various others like carpal tunnel. These issues are less as I now have only 100mcg (as opposed to 150 when I first started taking it). I would really like to take a 'natural', thyroid supplement as i realise I have no T1 & T2 from Levothyroxine and I just don't like taking a synthetic substitute. However I have done reasonable well on Levo so it is a quandry - apart from the financial issues to take into account. I suppose one of the issues to take into account is the conversion from T4 to T3 which I must be able to manage reasonable well.

  • Hi every one, I have been taking 100 mg levothroxine for the last few years. I have asked about T3 etc, and have read the replies on here. I am confused.com. Where do I go for blood test ? Where is Medichecks? I am just outside Cambridge. How do you know if the T3 is genuine from abroad? I feel like every one, aching muscles and joints but I have RA and fibromalgia.

    I just don't know where to start.

  • Medichecks us an online service they send you the test kit in the post and you can either use the finger prick or pay extra to have your bloods drawn it's all online just Google medichecks. As for T3 I can't answer that your best to put in your own post asking the questions and let admin answer (far more knowledgeable than me) I have just ordered thryogold though which is an NDT however I'm seeing my doc tomorrow to discuss everything? Get a full thyroid ultravit test done from medichecks post your results with reference ranges in brackets and go from there.

  • I agree . Doc's aren't much use. They just tell you your bloods are in 'Normal Range' and the symptoms you are having aren't related to the thyroid!. Just diet & exercise....

  • Thank you forgetting back to me, I will check it out.

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