Having been on levo for 6 months with the less than desired effects (got half a stone fatter, marginally more energy but really nothing to shout about), I finally convinced my endo to put me on t3, however, have come on a detox retreat to the vivamayr clinic in austria, where they have told me that natural desicated thyroid would really support me well.
I haven't yet relayed this back to my endo, but according to the people here at the detox clinic, the manmade synthetic hormones are bad for my body and natural hormones is the way forward. I am hoping this is true.
Having had such a shit experience with levothyroxine I am now ever cynical and but I am really hoping I will respond well to the NDT treatment. I was on 50mcg of levo prior to this, and the NDT contains 50mcg T4 and 12.5mcg T3.
It is called Thyreogland and it is an Austrian or German brand. Has anyone had any experience with this?
Do let me know!
Positive thinking and hoping this will be my answer!!
xxx
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Claudieg1993
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It's more than likely that you had such a bad experience with levo because you never took enough. 50 mcg is just a starter dose, and should have been increase after six weeks.
NDT suits some people, but certainly not everybody. I think the clinic is talking a load of BS. Natural Dessicated Thyroid may contain Dessicated pig thyroid - which is 'natural' - but it also contains a lot of fillers, which do not suit everyone, so it's not as 'natural' as all that. The synthetic hormones are the exact copies of your hormones made by your own thyroid, and some people actually do do better on synthetic - me, for example.
Having said that, it could be that this Thyreogland - which I have never heard of - is different. In which case, the question would be: can you guarantee a constant supply of this brand of NDT? Not a lot of point starting on it if you cannot continue taking it.
Hello On what basis did they decide you would do better on NDT? You may do, but going from the many posters in this forum, some do well on levo only, some need a mix of T4 and T3, some do better on T3 only and some do better on NDT. It’s very personal and I don’t believe that “natural” is always necessarily better. Sometimes it may be, sometimes not. Asbestos is natural after all!
I had a quick look at the place you stayed which looks absolutely lovely but personally I would be dubious about somewhere that professed to be all about holistic health yet offers keratin hair treatments! Keratin hair treatments are horribly toxic. Suggests they are more looking to make money than actually help people become healthier.
Can guarantee a repeat dose, so thats fine. My t3 was really low when tested so thats why my endo was going to put me on liothyonine t3 and levothyroxine t4 combination which i havent begun. I have secondary hypthyroidism due to adrenal and pituitary insufficiency. Does this make any difference to your viewpoint?
Only seen this reply because Minimum alerted me in her comment below. On this forum, you have to click on the blue 'Reply' button under the comment you're replying to.
No, the cause of the hypothyroidism doesn't make any difference to the treatment. The only treatment is thyroid hormone replacement of one kind or another. And, I expect your FT3 was really low on only 50 mcg levo. I'm amazed that your endo didn't increase it. But, then again, I haven't seen the labs.
Hello, I have no expertise at all - but I would comment that you really haven’t what I would call a proper dose of anything yet - until you get on a realistic dose of whatever you take how can you say something doesn’t work.
. . . . Stay with Levo. . I gained a stone weight when beginning. . . . . 8 Week intervals. Dose increased. . Now on 200mcg eltroxin. Divided dose. . Feeling me again after a long haul since last may. And the weight is begining to go. . Better the devil 👿 u know. . . Get ur Dose upped. . Continue to do so. Clean diet. . . No exercise u til u feel u can. . . Pushing tbe body to ecercise can upset t4 conversion to t3. Leaving U more miserable. The day will come u will feel like exercising. This has happened to me. Just recently. . . And it's great. . . . So. Back to the doc and ask for an increase. . . . . Slow process. . But u will get there. Takes time. And most of all. . Patience from you. . And ur surrounding family and friends. . . I am Nearly back to what I was. . Sparkle. Energy. Happy bunny. . But it was hard. Miserable. . Annoying. . I felt like giving up. . . But I accepted my situation. . Didn't do too much research. . . I did in the begining and Frightened myself. . . Focus on you. . . And what I learned the most. . . Don't blame ur disease for getting out of situations. . . . Make the choice. . . Do I need to do this. . Meet so and so. . Go here. Go there. . . . Conserve Your energy. . . . Don't get drained and overtired. . And learn to say NO!!! . Hope this helps. . Keep at it. And u will feel better. X
Experience. . .!!!! . Long road. But people have to know. . Ur body is like an engine. . And with hypo. . Mínus da. . Oil. . .for Such a long time before diagnosis. . . So it takes time to get the oil redistributed through out the body. . Same principle with the eltroxin. Needs time to get into every cell in ur body. Thankyou for such a lovely reply. It's just as it was for me. . . . And am getting better. . After being Sooooo tired. . . . Hopeless. . . Wordless and a complete cabbage for a brain!!!!!! . X
Yes I agree, I sent for some T3 because the Dr here reduced my Thyroxine from 75 to 50! Felt dreadful cancelled three apps with her
Because she speaks no English I translate before my visit but she does not translate back to me. Anyway had a blood test, obviously not good due to time and taking my meds on day! She went by the TSH and took 25 off me! Still feel desperate as to the best way forward. So I am buying the 25
I digress, the T3 never arrived from (six weeks ago! ) they said they did not get my payment? Have looked and it does appear they are correct. So back to square one?
Thankyou. . Feeling a bit challenged by some. . . Think I will retreat and hover for a while. . . . See These are the kinda peoples we need to stay away from. There has been a lot of progress in thyroid care in the last 18 years.!!!! Going to hide for a while Xoxo
Don't get caught up with t3. T4. Etc. . . . Just Focus on how u feel. Your thoughts. . And ur energy levels. . . Think u can get too medical and technical. . . Upping and down levels. . Sit back. . Relax. . Take meds bang on time everyday. . If u burn and crash. . Before the evening. And need a wee nap. . Divide ur Dose. . . It works. . . Dont focus on too much. . Take ur meds. . . Don't listen to the experts. . . Non medical friends who did this that etc. . . Listen to you and how u feel. . . . . . Dont get scared u are not seeing results. . . It's a slow process. Nourish urself. . Dont restrict ur diet. . . . . The body needs rebalancing. . . . . Eat Everything. And if u feel u need to cut out certain foods. . Do so. . . Only when ur thyroid is balances and properly supported with the right optimal levels. . . . Be Good to u. . U have only one body to live in. . It's already in crisis. . Do give it everything u Crave. Need. . Would like. . . . Listen to it. . . . Like a dog. . When he gets tired he lies down and rests. . . Do the same. . . . Keep away from drama. . Toxic people. . . Know-alls. Energy drainers. And pick ur friends wisely. . When u are sick u know who the real ones are. . Just a few things I learned. . . And I am still learning. . And words my doc said also. . . . Never mínd levels of this and that. . Get tested every 6/8 weeks. . . . Until U begin to feel better and look better don't busy urself trying to figure out whether u are absorbing this or that. . Busy urself on minding ur energy. . Building ur body. And nourishing urself. . . . Spiritually. Physically. . . And emotionally. . . . Di t Get too technical. Sit back let yaself heal and recharge. . . . I Did. . . It was damn slow. . . My doc said all this to me. . I laughed at him. . I cried. I gave out. . . . . . I couldn't even park da car right or think straight. Or find anything . . . I Was frightened. . . I Was plugged out. . But now I am getting there. . . Time. Time. . Time. Patience and good nutrition. Good company. . Good thoughts. . I Will get better. . . . I Will beat this. . . And believe me u will. Xoxo
50. 75. Starting loading dose. Very low. No wonder u are crashing I was crashing on 150mcg. But divided dose so now I don't run out of steam. Stay with it. . . Don't chop and change. . Easier to control rise. Levels with eltroxin. t4. . When neatly optimal. Then decide introduce t3 etc. Ur body us in crisis. . . Build one thing first. . I see patients coming into the pharmacy with a long list of extra nutrients. Add ones. . . Supplements etc. . . Chasing their tail trying to get better. And I often have to hold myself back and tell them. . Slow down. . . I am a pharmacy technician. . . . Love it. . But I am also a thyroid patient. Who is learning every day. . I also am a. . Neck watcher!!!! . . . And eye-watcher!!!! . Spotting people who have a thyroid problem. . . . . Our news reader onda telly has one!!!!! . . I try not to look. . But just wondering is anybody else like that. . . Chin up. . Recharge. And have patience. . . . Ur in crisis. And u need to rebalanced everything again. Xoxo. It's ten past four inda morning here. . Wide awake. . Getting up for tea. . Feeling Unsettled. . Blaming g da moon ☽!!!! Xoxo
I have never heard of anyone needing to take T4 in divided doses. It’s very slow-acting so taking it twice a day makes no sense as far as its release or conversion to T3 is concerned.
If you work in a pharmacy, as you claim, and meet thyroid patients all day long, how many times have you seen a prescription for T4 to be taken in divided doses...? Not many, would be my guess. I don't care how many times a day you take your T4, but you should not say that it's standard practice to take it in divided doses because that is simply not true. As a pharmacy technician (or whatever your title is) you should know that T4 is not released the same way T3 is, and therefore T4 levels do not peak the way T3 levels do. Therefore, T4 drugs are usually taken once daily.
Thanks. . . But am still hiding.!!!! . . Having a bad day today totally stiff. Sore eyes. And general. Lethargy. . And a nice dose of Crankiness added in for good Measure!!!! . Overdid it. And now totally plugged out. . . . See Exactly what I was saying. . Mind yaself. . And I didn't. . . . Tá Wouldn't work. And then realised I had the black cordless fone in my hand!!!! It's that kinda day.!! Fire lit and its freezing here. . . . Overdoing It. . . Really makes u feel. . . DONE. . X. .
Totally get that I stayed in my nightgown few weeks back for 3 days its funny cos I'd never admit that to my closest friends but here in this group we are all going through or have been in the same situation so i dont beat myself up about it so much now , love and light to you
There are no quick fixes and no magic treatments, sorry, it’s a case of finding out what works for you. I’ve tried Levo only, Levo and T3, T3 only, NDT only and T3 with NDT. Only the latter has worked for me. It took 12 months to get stable once NDT was introduced, I was off work for months and months. It really pays to give everything you try a thorough try before starting something different. It’s your life that will be messed up if it goes wrong. Good luck
6 months is probably not enough as it takes many months to get your dose optimal. It took me 5-6 months increasing every 6-8 weeks and that was to get to 100mcg. If you need more it would take longer.
If greygoose is correct and you were only on 50mcg this is unlikely to be enough levo to make you feel well and you will not feel well until your dose is optimised. Most people need 100-200mcg.
May be you will find NDT good for you, maybe not, but I don’t think you can rule out levo as suitable treatment from your trial so far.
What is NTD I have felt awful for years I have been on 75 Thyroxine for years, no one ever said anything, in UK had a yearly blood test with no advice, never Seen results ever! Just terrible told nothing!
Here in Canaries almost three years, never checked, until I felt so awful asked for more Effexor thinking it was that. Then she sent me for first blood test in three years here and reduced my Thyroxine from 75 to 50! You have no idea what’s going on! But my weight is up now, could well be due to sitting about, going to bed, doing nothing, never leaving the house, no energy, bad tempered, depressed, feel guilty because not doing the house work.
Indeed but I have not been able to do so, I have emailed a private Dr in Tenerife asking if she can arrange these tests I am waiting for a reply. I could manange to get there apparently it’s 11 hours by ferry. I need to know first if she is knowledgeable as I have been told about her. I was aslo waiting for T3 but apparently they did not receive payment?
It’s a time and also transport factor I am only there a few days and am committed some what. My Mother is 90 I am staying with her.
I can only do that because she now sleeps in a chair down stairs. Because she is afraid of falling, the bathroom is down stairs, it’s a tiny little cottage. I can use her bed. I have no car or anyone to taxi me about. I doubt I shall ever visit again.
I go on Thursday I cannot trouble my Mother with any of it, she has no phone or Internet. I had given up on that, it’s taking me all my time to pack a case to be honest. It’s also been a nightmare getting taxi from airport. It’s all become too stressful.
Totally agree with MiniMum97 , 6 months is nothing in thyroid terms. Especially as you didn't get past 50 mcg. You don't really know if it would have worked in the end, or not.
the second i went on levothyroxine i gained weight and despite increasing exercise and eating extremely healthily, i could not shift it for the whole six months I was on it. I gained over half a stone in a month upon starting levothyroxine and i truly did not change my habits, if anything, was more dilligent. This surely wouldnt be happening if the levothyroxine, even at 50mcg, was having a positive impact.
It does make sense. . Ur body needs ektroxin t4. U take minimum loafing dose. . . U upped ur exercise. Putting more strain on a body which is under strain already. Exercise is bad until u have levels upped significantly or optimal. U have upped exercise. Which in turn will severely challenge and restrict ur conversion of t4 to t3. Slow down. . Up meds. . . Eat well and settle. . Give things time to work. . . . Wear urself Out. U my never be good again. X
a properly functioning thyroid might be putting about equivalent of 150mcg Levothyroxine a day
If your thyroid starts to struggle, it might reduce its level to 100mcg a day. You start to get symptoms
If you're lucky TSH goes up and bloods get tested
Then, if you're lucky GP says ....."you need some thyroid hormone"
When we start on Thyroid hormone replacement, we have to start slowly, or it can be too much of a shock to the system
So standard starter dose is 50mcgs
Now the 50mcg does not add its self to your existing 100mcg output.....because the pituitary fairly quickly notices this extra 50mcg dose, turns the TSH down and your own thyroid takes a holiday.
So after a few weeks on 50mcg, it's not uncommon that you start to feel worse than before you started ....which isn't surprising as now your trying to function on just 50mcg
What should happen is that bloods are tested 6-8 weeks after each dose increase.
Levothyroxine dose then increases slowly in 25mcg steps until TSH is around one and FT4 at least half way in range
Extremely common for vitamin levels to be low, and these can affect a TSH too.
so vitamin D, folate, ferritin and B12 need regular testing and very often virtually for many, especially if cause is autoimmune thyroid disease, (Hashimoto's) we need almost continuously supplementing to maintain at good levels too
Gluten intolerance is extremely common with Hashimoto's too
My TSH was at 1 and my FT4 was at 14 as of most recent blood tests, and I am not looking and levo as a weight loss service of course but yes just trying to wrap my head around how I have gone on a hormone replacement which was supposed to help and not slow my metabolism even more.
Well, dose has to be increased slowly in 25mcg steps Most people eventually need somewhere between 100mcg and 200mcg Levothyroxine
What was range on FT4? Looks low in range
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if Thyroid antibodies are raised
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Do not take Levothyroxine dose in the 24 hours prior to test, delay and take immediately after blood draw. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
If on NDT last dose 12 hours before test
Is this how you did the test?
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or vitamins
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
About 90% of all hypothyroidism in Uk is due to Hashimoto's.
Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .
i totally understand this, however surely, given that this is a problem of secondary hypo, and thus is potentially reversible, i dont want to be on levo or any hormone replacement therapy for life, and surely I want my thyroid to be working on its own accord and not taking a holiday?
Secondly, given the low T3 reading of my most rrecent bloods ( i dont have the specific figure) I would need T3 support anyway?
I did bloods having not had my levo that day and also had vit D ferritin iron and b12 tested and they were all within good range. I dont eat gluten or wheat at all.
I just feel so confused about what to do next now. You all seem to be saying to me to up my levothyroxine dose to 100-200mcg with reg blood tests for monitoring, would using NDT and upping the dose of that to two capsules instead of one (100mcg t4/24mcg t3 ) not produce a similar effect?
I have secondary hypo and it has not reversed and I don't expect that it will. Once the pituitary is damaged, that's pretty much it. I think you are more likely to need T3 than someone with Primary hypo as TSH has a role in conversion and with central hypo, it isn't going to rise. But I go for a Thai or US NDT that you are likely to be able to continue to get and that is well-known. I think that what they are offering you might just be a glandular like Thyrogold, Metavive or Thyrovanz because it doesn't have the same amounts of T4 and T3 as regular NDT,
"This surely wouldnt be happening if the levothyroxine, even at 50mcg, was having a positive impact" - but yes it could be. With a low dose, the negative feedback mechanisms between the hypothalamus, pituitary, and thyroid can, in effect, create a situation whereby you are effectively as bad as, or even worse than you were before you started taking levothyroxine! That is why the timely repeat testing of hormone levels, and adjusting dose accordingly, is so important to get you to the state of being optimally medicated and euthyroid. In fact it is stated in the PIL (presuming you aren't elderly or have a cardiac problem):
"The usual starting dose is 50-100 mcg every day. Your doctor may increase the dose you take every 3-4 weeks by 50 mcg until your thyroxine levels are correct. Your final daily dose may be up to 100-200 mcg daily."
A Dr who doesn't understand this, often sets up both the patient and the Levo, to fail from the get go.
I’m on NDT after doing a ton of research I liked the idea of it. I prefer it over synthetic but have had to learn how to listen to my body and adjust my dose accordingly. Remember whenever you go for a blood test don’t take your meds until afterwards. I always try and get an early morning appointment
I have been diagnosed with Hashimoto's 32 yrs ago after the birth of my 2nd son and have been on Levothyroxine for 31 yrs. I felt quite ok with it for a long time and yearly checks/ blood tests etc, always ok according to physicians. But over the last six yrs I started to develop all kinds of symptoms which I first neglected, then went from doc to doc/ specialists, never finding out anything.
My symptoms were : weight gain ( not too much, I was always sporty), fatigue, sleep disorders, hair loss, irritability, neuropathy in feet, then legs etc... I got scared , as no endo/ specialist could diagnose anything .I started on my own (books, forums,friends with similar experiences). First I supplemented Selen, B-Complex, Vit D3 and K2, Omega 3,Iron, Zink, gut cure, ... I started feeling better, hair loss stopped, then I started gluten-free (this was the best for me - within 3 days no brain fog anymore, more energy, better concentration).I lost 7 kgs (especially belly fat, have now my original weight before my thyroid diagnosis).In March 2018 I started on NDT (first Thai, because I was in Thailand for 5 months, prescribed by Endo from Bangkok Hospital), back at home I went to a doctor in Austria/ Innsbruck, who has experience with Thyreogland (Klösterl Pharmacy Munich). It took some experience to find the right dose: now my T3 is where it has never been before, I feel my old self, not like a psycho, I sleep, my wrist pain has disappeared and my feet have almost recovered ( I still do foot reflexology massage which helps me a lot). I have started taking Iodine in form of Nori algae, feel it does me good, I could lower my dosage, I'm now taking 1 3/4 grain of Thyroid from Weltapotheke Vienna, which only contains the hormones in cocoa butter. My antibodies are not measurable anymore, in the ultrascan my thyroid has grown a bit. My aim is to be free from medication one day, if possible.
Fantastic, this makes me feel very excited to try Thyreogland, I am in Austria right now and have been prescribed it here. Can I ask what dose you take of Thyreogland and how quickly you started to feel benefits? X
I had a low T3 on Levo so convinced my Endo to put me on NDT. I’ve tried lots of different brands and WP was my favourite but unfortunately it’s out of stock so I’ve sourced one from Thailand which was £56 for 1000 delivered. The trick with this disease is to listen to your body and read as much as you can about the condition STTM is a good site and this site is invaluable. In terms of weight I stay pretty steady but I do have to work hard at it. I find that with NDT I can lose weight like anyone else if I’m at the optimum dose. Which brand has been suggested for you?
But 6 months isnt long enough because you have only been taking 50mcg of levo which is a starting dose , I gained a whopping 3 stone in weight when I was on levo only and it made me dreadfully ill and I had been on it for 3 years at a dose of 150mcg , only then can you say enough is enough . Sorry but 6 months on that tiny dose isnt doing anything .
It’s your decision of course Claudieg, but there’s a consensus here from people with many many years experience of thyroid - in my case 26 years but probably over 100 years between us on your thread. Levo is the easiest medication to take and once stable can be very effective for long periods of time, perhaps life. In my experience it takes much longer to get stable with T3 in the mix or with NDT.
One thing to take into account is that your thyroid may be reducing in function over time and so it is essential to give it time to stabilise, monitor, adjust, restabilise, remonitor, readjust etc.
It isn’t for weight control either - possible to gain weight with too high a dose as well as too low a dose.
A quick fix is very appealing, but unfortunately there isn’t one out there, whatever they tell you
You have been given some very good information and help here. I am a relative novice on this and my path hasn't been straightforward. But I can tell you that 6 months is nothing and that 50mcg Levo is nothing and definitely made me feel worse. When I increased to 75mcg I felt even worse than on 50. But I had faith in the advice from here and kept going. At 100mcg I started to feel better and after many years of scant body hair I was thrilled to see small fine hairs returning to my arms. However, when I tested I was still deficient so increased to 125mcg and felt no improvement and some deterioration. The little hairs disappeared and my eyebrows thinned a little more. On retesting my T3 had fallen and my T4 increased so that my balance between the two was off. I am now adding in some T3 to the mix. I am currently back to 100 levo and 12.5 T3 a day. I retest next week and know by the way I now feel, that I need an increase.
So much of this condition is learning to read the signals your body is giving you. Someone has encouraged you to think that you won't need to be on these hormones forever and that your own thyroid can "recover". In all likelihood that's not going to happen. So you need to get it right for the long term. A bit of weight gain whilst getting treatment sorted out is not a high price to pay. T4 is so much easier to take, so I would urge you to try to optimise it with help from this site. To do that you post your blood test results with the reference ranges and ask for opinion of your next move. For me it's been invaluable.
Finally, I have experimented with NDT in the past. It's not the quick fix many long for. There isn't one. I did do quite well on it for a while, but then started to not feel good and because I had no one to advise me (hadn't found this site and doctor was off for emergency surgery) I weaned off. I did OK without for a while but gradually my TSH went up and up. NDT still needs to be slowly titrated in 1/4 or grain doses and still takes lots of time. It will still cause your own thyroid via the feedback loop, to reduce it's output and cause you symptoms until you hit your sweet spot. The worst part about using NDT is getting hold of it reliably.
Agree with so many of the above. Having read posts for many many years now and listing to Levo doesn't work then results usually show either too low a dose or not converting well. Both these must be sorted before you think of changing. On a low dose you can't really tell if you have a conversion problem as the dose is on the floor plus once you take any form of T3 then you can't anyway as results are read differently so then the only accurate reading is the FT3 one so you are unable to compare your T3 with your T4. So you need to get your dose increased and when optimal to you then you need to look at conversion issues and address those before you contemplate another dosing regime.
Also some can make the change to NDT or adding in T3 until these converstion issues are address. So please don't jump into the deep end. Take a while in the shallows getting yourself on the correct dose for you and be sure you are converting properly. Then you may not need to look at another way of medication!
Also get your Vit D, B12, folate and ferritin tested They need to be optimal, not just in range. So many of us need to supplement, usually for life but these 4 help your thyroid to work better, can reverse conversion issues, I reversed mine this way and it also helps with symptoms
The advice on here is invaluable. Unfortunately, we all think that we will get well immediately once started on levo. I have experimented. I started on a a very low dose of levo which kicked in quickly but then I started to go downhill again so I bought T3 privately & then NDT. I'd read so much positive stuff about NDT on different sites that I believed it had to be the answer. After a short while I became unwell again so I put a post on here asking for help & I was encouraged to ask for an increase in levo which has worked. I'm now on 100mcg Eltroxin. My weight fluctuates unfortunately. After seeing my Endo recently he is going to suggest to my GP after blood tests to maybe increase it to 125mcg which I feel will be right. Such a fight!
But all thanks to this site for your continuing help.
I had been on levothyroxine for over 29 years and have never felt right, after a trip to America where I ended up having to see an endocrinologist I got put on Armour, that was about 7 weeks ago, omg I have never felt better, it has given me my life back .... but ....my doctor here has told me yesterday that they won’t prescribe it here in the UK and that I have to go back on levothyroxine!! Which I have also discovered contains lactose and I’m lactose intolerant!! So flipping unfair ... I don’t know what to do but am so pleased for you because it will really make you feel human again ... good luck and let us know how you get on xx
6 months on such a low dose wouldn't have helped you much. Personally, it has taken 18months for me to stabilise on 100mcg, and, at last, my weight is slowly starting to drop and I've lost my 'hamster face'. I did gain more initially. There are no magic overnight cures with our problem. Try to be patient and hang in there. Good luck.
Hi Claudieg i am new here - but made a post the other day because I am also not improving on thryoid medication. My TSH has gone from 5 (range 0.4-4.4) to 6.5 over six months on levothyroxine. After four weeks on it I stopped because it made me so tired and i also put on even more weight despite an incredibly restrictive diet and a lot of high intensity daily cardio. But my dr. convinced me to give it another try before trying NDT in 6 weeks if my TSH doesnt improve. I have actually been on T3 for a few years (and that also hasnt helped with metabolism/ weight issues, even though most people seem to do well on it even if they struggle with T4.) after some suggestions here I think my body is having trouble using the T3 because of low ferritin perhaps. My thryoid numbers (have a look at my post if interested got worse over the years despite increasing dose of T3, and then got even worse with Levo.
I dont have Hashimotos (and i dont think i have primary hypo) and like you I have poor adrenal function. My DHEA is 1.6 (range 1.7-11.5) and my cortisol is too high and too low depending on time of day. I think this is why thyroid medicine is not working for me. I have read if you have adrenal issues the T4 can make your thryoid worse but I dont fully understand the mechanism here. What do you do for adrenal function?
Like you, Im not primarily concerned about the weight but it is a huge marker as to what is working. And my thyroid results usually move in lockstep (if im gaining weight on levo, my thyroid is getting worse)
Anyway I dont have any suggestions, but very interested to hear how the NDT works for you! And also interested to hear what you do for your adrenals. I take a lot of adaptogen based stuff on recommendation of Dr. but not sure if this is effective enough?
For me the T3 hasn't helped my thryoid or weight but does make me feel better and have more energy (as opposed to the T4). hopefully the NDT helps you!
Thank you so so much for your message Jane. Super helpful to read about adrenal support with thyroid. Yes I was taking a lot of adrenal support - but have recently cut back on it. I will probably start again whilst on NDT. I find the liquid drops of ashwaghanda, korean ginseng, astragalus, cats claw, liquorice, dandelion etc to be really wonderful. I have used those a lot over the last year. Ashwaghanda is especially great. I will let you know how I get on with NDT in particular this brand..
I think ultimately best cure for adrenals is stress reduction and rest. I dont do HIIT anymore , it works by sending your body into fight or flight mode and thus dropping excess weight so that, were a sabretooth tiger coming at you, you'd be light on your feet. But with already taxed adrenals, this fight or flight situation is the last thing we need. I now do low intensity cardio, a lot of yoga and pilates. Even though I have gained weight on levothyroxine I think keeping exercise to a manageable level is going to help you lose weight not store it. Also, meditation, is so good for reducing cortisol. Lets stay in touch . How much levo and T3 were you on out of interest? And how much weight did you gain in what space of time? Was it kind of instant upon starting it?
yes please keep in touch and let me know how you go! sounds like we are in a similar boat! I started on 5mcg levo when my TSH was elevated at maybe 3.5 a few years ago. I was only ever subclinical (ft3 and ft4 within range but not optimal) Quickly went up to 30mcg, which Ive been on that dose maybe 2 years. TSH increased to 5 over that time and there was no improvement with ft3 numbers. Added 50mcg Levo 6 months ago. TSH moved up to 6.5 now. I agree re: stress on body, my resolution since my last result is to cut the cardio and do yoga, walks and eat at least 1200 healthy calories. The only time i actually ever lost weight over the past few years was when i went on a 3 week beach vacation.
When you go on the NDT maybe check your ferritin and other minerals are OK. I think from what I now understand that a deficiency is why my body has not used T3 well even though it seems to be great for a lot of people in increasing metabolism and ft3 levels. I think it is a bit like a chicken/ egg - your ferritin worsens the cells take in of T3 and poor thryoid function lowers ferritin.
Also - not sure if related to adrenals but i think it is - I had insulin resistance, which is worth checking for
I saw that Thyreogland is a prescription NDT drug manufactured by the Klösterl-Apotheke in Munich, Germany. Does that mean that you can get a doctor's prescription for it in Australia and then order it from Germany? I found some posts about it in German-speaking forums. The reviews are good, and it seems to cost about the same as Armour and Erfa (the price mentioned a couple of years ago was 55€/month, depending on how much you take of course).
…will supposedly send the medication abroad, prescription required and credit cards accepted. They source the thyroid from Europe and have no shortages. They will also compound any strength and combination you require. “THYREOGLAND” from Munchen (Munich), Kloesterl Apoteke, Waltherstrasse, 80337 Muenchen. Phone: 089 54343211 (Let me know if my information is incorrect, please)"
I think that the German pharmacies will accept prescriptions from other EU countries (currently including the UK) but would be surprised if they had arrangements with anywhere else. But I could very well be wrong.
Sorry to take this off-topic, a bit. But every time I see the title of this post, I initially read it as "Thyro-Legoland" - and imagine little Lego figures with goitres.
Yep. Me too. . Read it like that and wondered. Brain fóg today. . . Overdid It. . Clearing garage yesterday. and now am Totes plugged out. . . . Thanks for da giggle. . . . . Loved it. X
Update guys: 1 week in and feeling fantastic on NDT. Have lost all the excess weight already and full of energy and no faintness or brain fog or anxiety like j was having before! Will keep all updated!!
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T3 dosage and prescription 
Anyone heard that ndt is bad for hashis?
Has anyone had to go off NDT and back on T4 only...?
My heart isn't happy on levo... anyone else?
General worries prior to NHS endo appt that might not go anywhere given I am euthyroid.
