I have underactive thyroid and have been prescribed levothyroxine tablets. I have been on them for 2 years and I don't feel any different, I am still very achy, I am still losing a lot of hair and I have not lost any weight. I follow the GI diet which was recommended by my doctor and I go gym 4 to 5 times a week. I work really hard at trying to loose some weight and am very disappointed that I can't. I am on 100mcg and blood test say my thyroid levels are fine. Has any one else had the same issues and what would you recommend that I do?
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kuresakaji
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On first glance without the lab ranges I'm guessing you may not be converting your levo to t3. Your tsh is good (a lot of people don't feel better until it is under 1) and if your t4 is 20.1 that's also likely to be good (often the range goes up to 22 or thereabouts) but I wonder if they've tested your t3. Sometimes you get a bottleneck where your t4 is high and t3 is low. You can try getting all your nutritional ducks in a row and that might improve things but others need to add some t3 or switch to ndt, which contains t3 and t4. But this is just a guess without tests.
If you find your doctor hasn't tested and won't test t3, you can go to Genova or Blue Horizon and buy a private test if you like, but then you have to be prepared to self-treat as sometimes doctors won't take private tests into account.
Can you please explain NDT for me, as I have just been prescribed Levo, i don't like taking tablets unless I have to and would prefer to go down the natural root if I can.
Despite its name, NDT is not as natural as all that! Certainly not what you mean by 'natural'. It's still a pill, and pills have to be processed or they won't stay pills. NDT is wonderful for some people, but for others it's a nightmare! So, don't go running away with the idea that it's got to be better because it's 'natural'.
SR119 That's rather an irresponsible thing to say and scaremongering for any newbies!
First of all Levo is not a 'drug'. It's a synthetic hormone.
Secondly, it's not 'awful'. You may not have done well on it but thousands of hypothyroid people do who don't visit this forum because they're doing just fine.
Thirdly, NDT doesn't suit everyone (just as Levo doesn't suit everyone), I tried Armour and generic NDT and it never helped me.
Fourthly, weight loss will happen when optimally medicated with thyroid hormone, whether that be Levo or NDT.
I'm entitied to my opinion. If they're suffering on Levo , is it not safe to assume it's probably not the best for them. I lost five pounds the first month on armour. My physician says 20% cannot take Levo . NDT has all the hormones not JUST t4. If you have a sick thyroid it cannot do its job which would be to convert t4 into t3. So I believe wholeheartedly that NDT is the way to go. Natural over synthetic !
Of course you're entitled to your opinion, but to give Levo a chance then vitamins and minerals have to be at their optimal levels for it to work so it's best to sort that first then look at alternatives if things still aren't right, but to tell people to 'get off that awful drug' is a very scary statement for a newbie.
And by your own physician's admittance, 80% of people can take Levo.
I know exactly what is in NDT.
If you have a sick thyroid that can't do it's job then you put everything in order (vits and mins) first for it to have the best chance of working and converting properly, then if things still aren't right we look at the alternatives.
Don't forget that NDT has a fixed amount of T4 and T3. Adding synthetic T3 to Levo actually gives a much better chance of tweaking the levels to an individual's needs and getting a more accurate dose that's right for that particular person so there's something to be said for synthetic as well. And NDT contains as many fillers/excipients as synthetic thyroid hormone.
I guess you prefer cubic zirconium to diamonds as well? It's a personal choice and I felt dead on Levo and yes my vitamin D was low and yes I brought it up with supplementation. I could not stay awake during the day at all! I slept during the day! The very first day on armour , I stayed awake ALL day! So for me Levo was a horrible drug!!!! If you're one of the unlucky souls who don't do well on it to you it is horrible! I'll reply no more to your moody ass! Now go find someone else to hyper focus on and pick on !
Oh and the 80% how many do you think actually ever got to try NDT? It took me four doctors to finally get to try one prescription! Most of the people I meet have t heard of it!
I've been on Levi for six years .gained four stone been dieting for god nos how long I've got no energy ..could sleep forever my hair falls out ive very sparse eyebrows but because I suffer with bad depression and anxiety. .the thyroid takes a back seat and all my symptoms get blaimed on depression
angel2006 Doctors like to blame depression for lots of things, they have very little understanding of thyroid disease and don't seem to be able to think outside the box.
Your hair falling out is quite likely to be low ferritin, although hypothyroidism is a reason but if you're not optimally medicated it wont help.
I will answer your other post about Blue Horizon further down.
And you've just proved how childish and ridiculous you are, you can't discuss things like an adult, you have to start throwing insults around when someone doesn't agree with everything you say.
Yes, it is a personal choice, we each have to find what is right for us as an individual so you can't go around telling people to 'get off that awful drug'. It may have been awful for you, but that doesn't mean to say it is awful for everyone.
You'll find, if you actually bother to read posts on here, that we try to help people understand their condition, point them in the right direction for getting as much information as possible, make suggestions to get everything in place to help themselves, show them alternatives if something doesn't work, we don't ram personal opinions down their throats but share experiences on what has and hasn't worked for us individually.
Perhaps it's time you went back to the playground and pick a fight there.
I was on Levi for about thirty years and I agree it's terrible! whilst I still don't think I am 'optimal' whatever that is, I feel a dam site better on NDT (Erfa & Thiroid mix at the mo as I am experimentingwhat is best for me at the moment.
Yes, maybe, but I felt terrible on NDT - I put on an extraordinary amount of weight and became bed-bound, which I wasn't on levo. There is no one thing that suits everybody. As SeasideSusie says, we all have to find what works for us, but not scare others in the process.
Yes for me it was terrible . I'm convinced I would weigh 300 lbs now had I not gotten off of it. I was steadily gaining in spite of Dustin and exercising.
How much Armour are you taking? I want to get off Synthroid and may just stop taking it for a while and start over. I'm worse than when they diagnosed me with hypothyroidism.
Was diagnosed with Hashimotos in the spring. I got off Synthroid in the summer for the same reason - felt worse on it but I was only on it since the spring. I am trying to address it holistically and working out 5 days a week with weights most days (upper and lower body days swapped along with cardio). I also am on natural hormones, Omega-3 and Vitamin D supplements to help with my hormone and energy levels. I have much more muscle tone, skin is clear, my BP is in the normal range - weight loss is slow but I look better and feel better. I also cut my hair as shorter hair does a better job at hiding thinning hair. It took me a while to get used to my cut but I love it now, get lots of compliments and I don't feel as self-conscious about it. And ironically, while there is still some shedding, there is also some hair growth. What I am learning is that this journey is trial and error. It is not something that is a quick fix. It will require patience and tenacity. I am fine with that as long as I feel better not worse and so far, I am doing pretty good in my mid-40's. Hope this helps!
I would recommend getting hold of a copy of Dr. Barry Peatfield's book to get an overview of your thyroid's functioning and an understanding of some of the possible reasons why it could not be working for you. It is written very comprehensively. NDT could well be the answer for you.
You need good levels of Ferritin - folate - B12 - VitD for your Levo to work well and for you to feel well. Have they been tested ? Important to have the FT3 tested too - as that is the ACTIVE thyroid hormone and needed in every cell of your body. Also linked to your body refusing to lose weight You may need to have them done privately to have the correct testing done ....
hi could i ask where you would recommend to get the right tests done. I have had problems with my thyroid for 30 years and dr always say not further action but in 2020 I found a lump in my neck which turned to be cancer I had a full thyroid removed then stared looking into things and think I have hassimiotos I am struggling more and more weight going up long list of side affected and no one listening I need to know what am dealing with as am going out my mind xxx
Unless you've been tested extensively for T3 and the other battery of thyroid tests that will give a realistic picture. I'm 63 and was only tested a year ago for these and found that my body was not breaking down the T4 into T3 so my body could use it and that's why I was hypothyroid even though I was on a 150 mcg per day. After being started on the lowest dose of T3 5 micrograms and then doubling that while lowering my T4 Levothyroxine, virtually all my symptoms are gone and I feel like a new person. I'm angry that it took so long for me to get educated as I've seen numerous endocrinologist over the years.
debralee, would you mind if I send you a pm, Im interested to know a bit more about how you've done things. I'm 61 been on Levo for some years but like you only started questioning things in the last year or so.
I agree, ask GP for your results and the ranges for any tests you have done, so you have a record of your results to compare each set in future. The GP invariably says "fine" or "normal" but GP's in my experience are crap at understanding the results.
If you live in the UK and need help with the T3 medication which is called Lithyronine, they won't prescribe it anymore as it is considered a "Red light" medication it is too expensive for the NHS as only one pharmaceutical company supplies it to the NHS. The GP/Endo's will tell you it doesn't work anyway, but it does and it is not harmful to the body unless over dosing. However, check out your B12, Ferritin and vitamin D levels, they are vital to your well being. If you do not get any joy with your GP, get a second opinion. Do not over exercise, until you know your results, as it will add to your exhaustion and make you feel worse.
Also have you had thyroid antibodies checked? There are two sorts TPO Ab and TG Ab. (Thyroid peroxidase and thyroglobulin) Both need checking, if either, or both are high this means autoimmune thyroid - called Hashimoto's the most common cause in UK of being hypo.
NHS rarely checks TPO and almost never checks TG. NHS believes it is impossible to have negative TPO and raised TG. It's rare, but not impossible, there are a few members on here that have this.
If you can not get GP to do all these tests, then like many of us, you can get them done privately
Blue Horizon - Thyroid plus eleven tests all these.
This is an easy to do fingerprick test you do at home, post back and they email results to you couple of days later.
Usual advice on ALL thyroid tests, (home one or on NHS) is to do early in morning, ideally before 9am. No food or drink beforehand (other than water) If you are taking Levo, then don't take it in 24 hours before (take straight after). This way your tests are always consistent, and it will show highest TSH, and as this is mainly all the medics decide dose on, best idea is to keep result as high as possible
If you have Hashimoto's then you may find adopting 100% gluten free diet can help reduce symptoms, and lower antibodies and improve vitamin levels too.
Assume you know that Levo generally should be taken on empty stomach and no food or drink for at least an hour after. Many of us take on waking, some prefer bedtime, either as more convenient or perhaps more effective. No other medications at same time, especially iron, Vit D, HRT or magnesium, these must be at least 4 hours away
Best advice is to read as much as you can. Vitamin and minerals levels are very important, but standard NHS thinking, doesn't at the moment seem to recognise this. You will see, time and time again on here lots of information and advice about importance of good levels of B12, folate, ferritin and vitamin D, leaky gut and gluten connection to autoimmune Hashimoto's
How much does blue horizon cost..where do you get it from .and if results are different from my doctors..will they except privately done ones.at the moment I'm on 225 levo and feel awful thanks for any help
The Plus Eleven will do all relevant thyroid tests including both antibodies. It also does the essential vitamins and minerals - B12, Vit D, ferritin and folate. It takes about 48 hours to get your results emailed back to you after you've posted your blood off.
They probably use a different reference range to your doctor's lab, but that doesn't matter because it's where in the range you fall that matters regardless of the actual range. Your GP may not accept the BH results but it may prompt him to do the same tests himself.
Optimal levels of all vits and mins are essential for thyroid hormone to work properly. The FT3 test, compared with the FT4 test, will show whether you are converting T4 (the storage hormone) to T3 (the active hormone). This is where GPs (and some endos) let us down, they attach no relevance to FT3 and it is the most important test. If you're not converting properly then it doesn't matter how much Levo you take, it just wont wont properly. This was my problem, I had way over range FT4 and a GP screaming 'OVERMEDICATED' because of that and my suppressed TSH. She didn't bother about my in range FT3. I've sorted it myself by reducing Levo and adding some T3 but first I optimised all my vitamin and mineral levels and added selenium to help conversion.
If you have any current results you could post them (best in a new thread), include the reference ranges, and members can comment.
OK, include as much info as possible. Have you got past print outs of test results? Good for comparison, include any dose changes.
Have you ever had antibodies tested? Have you ever had vits and mins tested? Maybe your GP could do these, save you the cost of private testing. All helps.
Nothing will work if you don't take enough of it. That's something that doctors just can't get their little heads around. 100 mcg is little more than a starter dose, but your doctor's knowledge of thyroid will be so limited that he won't really know what he's talking about.
Recovering your health starts with good labs. I imagine your doctor is just doing the TSH. That's not enough. Get private labs if you want to get better.
TSH
FT4
FT3
TPOab
TgAB
vit D
vit B12
folate
ferritin
Then you will really know what's going on instead of just guessing. Details of private labs on TUK home page.
The gym is probably making things worse. Exercising uses up your T3, which you cannot easily replace. So, it makes you more hypo, and then you put on even more weight. It will not make you lose it. Neither will low calorie diets because they have a negative effect on the production of T3. So, until you know where you are and where you're going, give up the gym. You will probably feel much better.
How Bodybuilding Can Help You Manage Symptoms Of Hypothyroidism:
Though hypothyroidism is treated with medicine, bodybuilding can also help you manage some of your symptoms.
Bodybuilding Helps You Lose Weight:
Weight gain is a hallmark of hypothyroidism. Though medication may help you get your weight back to a normal level, bodybuilding can help you get there faster.
I have Ben weight training with a PT since March. He is very genned up on Hypothyroidism now because he wants the best for me. I've only lost just over a stone but I have gone from 22/24 clothes size to 16/18. I'm not the kind of person to tell Granny how to suck eggs but I am a glass half full kinda gal and just want to share my success and hopefully help someone else with my experience.
Marie Spano is a leading authority on translating the latest nutrition and exercise science research into real life applications. Ms. Spano has also helped Olympic athletes, NFL-bound athletes and Fortune 500 executives enhance their health and performance through sound nutrition practices. She is a regular contributor to bodybuilding.com. For more information see: mariespano.com
But, you're only telling half the story. What are you taking? What is your FT3 level?
I'm not saying that because a person has hypothyroidism they can never ever go to the gym again. I'm saying that a person who is under-medicated, or who cannot convert T4 to T3, or who cannot absorb T3 for whatever reason, should not be doing excessive exercise, because it uses up T3 which cannot easily be replaced.
T3 is needed by every single cell in the body for everything that you do and for every single process in the body. If you only have a little, and you use it all up on exercising, what is going to happen to the rest? You are just going to get more and more hypo, with all that that entails.
You cannot just compare yourself to an unknown person, saying 'if I can do it, anybody can'! Because that's just not true. Everyone's story is different, and has to be judged on it's own merits. Some people can do what you do - some can even do better - but some can't do it at all.
I'm on Erfa 120 mg and Thiroyd 120mg per day at the moment because I'm experimenting. I have no idea what my FT3 level is.
I was very very poorly and was diagnosed with Hyperthyroidism at seven years old. 7/8th removal at 13 and I'm 52 now after suffering with Hypo since my mid twenties.
Up until I started NDT just over a year ago my life was a living hell. It was then I decided I was not going to be a victim any longer and try to put some effort into getting well. It was that or kill myself plain and simple.
I'm not preaching to anyone but I am passionate about what has helped me. If just one person on here tries what I'm doing and improves their health and life it was worth sharing on here. 😊
Well, I will continue to advise people not to even try until their levels are optimal. If you don't have a thyroid, body building is not going to raise your levels of T3, it's going to lower them. And that has nothing to do with being an optimist or a pessimist, it's biology, not philosophy.
Oh, very clever! I am not confrontational, I am just trying to help sick people. And when someone suggests something inappropriate, I say so.
I thought you were talking about body building, no? On the thread of someone who is not ready for it, and to whom I said as much. That sounds to me like suggesting someone weight trains whilst not optimal. No? Did I misunderstand? If so, perhaps you would like to explain that to kuresakaji yourself, because I've completely lost interest, I've said what I have to say and am now moving on.
If you've not had a recent blood test ask for a new one. It should be the very earliest possible and fast. Allow about 24 hours from the last dose of levo and the test and take it afterwards.
Your dose of levo might be too low as many doctors believe 'in range' is o.k. and stops increasing dose so that symptoms are not alleviated or we may get more.
Ask also for B12, Vit D, iron, ferritin and folate too.
Get a print-out with the ranges and post on a new question. Also doctors are apt to give us too low a dose.
I didn't ask TBH. I got a Hypo diagnosis from the GP, but to have got t3 would inevitably involved some arsey Endo sticking his nose in. I can't be bothered with that. The private tests (& limited NHS ones) gave me all I needed to know. T3 is cheap enough.
I've had exactly the same unfortunately for 15 years I have taken myself off thyroxine all together and I feel no different from when taking medication. I am now going to pursue a consultant I have been recommended a Mr Lagi from St Richards hospital has anyone else had any interaction with him as I know he advocates Armour which is the route I intend to take as highly recommended by most
Have you tried changing your diet? I found that a strict gluten free, dairy free, diet has helped me. I eliminated red meat and eat chicken a few times per week. Instead I eat lots of nuts, seeds & beans for protein. My Endo told me I'm not celiac, but this dietary change made a huge difference in my weight and I no longer feel bloated or achy. Anti inflammatory diet can make all the difference!
you sound like me....i found out that i had low normal ferritin below 80, i had low normal b12, i had high cortisol two times a day with saliva test, and i was already on d3 ...i say that because i also had low normal free t3..... IS YOUR DR TESTING ALL OF THESE...bec if not you are throwing a dart at one thing for your hair loss and all can cause hair loss......so dr put on nature throid last visit and wish she had put me on WP thyroid which has less fillers that i would like to try......but i also take iron, b12, d3 , etc.....so very important to go to a dr that knows to test all these things.....if you want your life back and your hair back.......i am too early to give raving reviews but i have not lost weight but i have noticed my legs are not so swollen looking hence i carry fat waist down....so i am also cant wait until weight loss, hair growth and my free t3 to get where it should be because it is huge with hair ...ALSO MAKE SURE YOU GO TO A DR EXPERIENCED IN NATURAL THYOID MEDS....or you will be wasting your time......that is crucial....i was also low in dhea and they tested my estrogen testosterone , dht, progesterone as well hence a bio identical dr
After two years of being diagnosed with hypothyroidism and being prescribed levo I feel worse than before I took it. I have had fibromyalgia for over 20 years and was used to aches and pains and fatigue but now it is far worse: I have developed arthritis everywhere which is also debilitating and life limiting and I recently have been short of breath and fatigue is almost as bad as before I started taking levo and walking is difficult. Almost a year ago I did a Blue Horizon test which I took to my GP and he couldn't believe that my T4 was so high (16.88), so he gave me another test which showed up high as well. I am now taking 100 mg levo. These are the tests from Nov 2015:
Blue Horizon 27 November 2015
Biochemistrypatient resultsnormal rangeunits
CRP 2.50 <3.0mg/L
Ferretin 75.0 20 – 150ug/L
Thyroid Function
Free T4 16.68 12 – 22pmol/L
Free T3 3.92 3,1 – 6.8pmol/L
TSH 10.39 0.27 – 4.2IU/L
T4 Total 102.1 64.5 – 142nmo/L
Immunology
Anti-Thyroidperoxidase >600 <34kIU/L
Anti-Thyroglobulin Abs 77.0 <115kU/L
Vitamins
Vitamin B12 404 Deficient <140pmo/L
Insufficient 140-250
Consider reducing dose >725
Serum Folate40.43 10.4 – 42.4
Blue Horizon also said that because anti-thyroidperoxide was high I was in danger of developing hashimotos disease (which my GP disputed). I have given levo a go, so what now? I am feeling exhausted all the time so getting my head round anything at the mo is hard. I know everyone has a right to their opinion but having arguments on this forum is really unhelpful to those who have yet to get their act together! I have a friend who was on armour for years and now is back on levo because armour wasn't working. She also has fibromyalgia.
sandy471 You do have Hashimoto's, you have very high TPO antibodies >600, that is autoimmune thyroid disease aka Hashimoto's.
If you'd like to start a thread of your own, put all the relevant information, results with ranges as you have here, members will comment. Best to get it off this thread, if you have your own thread more people will see it and it will be at the top of the page whereas this one has gone way down now.
Besides your positive TPO antibodies, you have a very high TSH and a low B12. Members can make suggestions, one of which will be that you are undermedicated, and I'll be happy to give links to some information about Hashi's for you.
Thank you SeasideSusie I do have results from Jan 2016 but they're at the doctor's (GP said that TSH was 4 which was ok) and I didn't get a print out. I am going to ask for all my blood test results for the last two years. I will put my results up in a new thread when I have them all on my computer!
OK sandy471 , good idea to get everything you can, put in a new thread with results (plus ranges), and we can go through everything and members will comment.
About the Hashi's, I don't know how much you know but it's antibodies attacking your thyroid and will do so until it's destroyed. While that's happening symptoms (and test results) will fluctuate. Hashi's isn't treated, it's the resulting hypothyroidism that's treated.
The best way to help yourself is to try and reduce the antibody attacks. And the best way to do that is to adopt a strictly gluten free diet. Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks. Many members have had enormous success with a gluten free diet. Some also find they need to be dairy free. Another thing that helps is supplementing with selenium and also keeping TSH suppressed helps reduce the attacks.
Thank you! I've got loads of reading to do! I must get my head round it all to blind my GP with science! He's quite biddable usually but cost is a big factor. One more question. Does hashi's affect your walking? It feels like walking through mud. I do have some musculo-skeletal problems but I have had this every now and again for years.
To be honest I don't know about the walking. I'm not Hashi's so my knowledge comes from what I've read and I haven't researched it in depth. I do know that musculo-skeletal problems can be associated with low Vit D and probably low B12 as well, I see your B12 is quite low and that needs supplementing. Have you had a Vit D test done? If not can I suggest you get one, it would be suggested when you start your new thread anyway, along with suggestions about supplementing B12. If your GP wont do it you can get one from City Assays, an easy fingerprick bloodspot test at home, comes back in a couple of days, costs £28 vitamindtest.org.uk/vitamin...
What exactly do you mean 'your Hypothyroid body can't cope with it?
I have been weight training with a PT three times per week since March this year and I certainly feel and look better for it, plenty of other people have told me so too.
How Bodybuilding Can Help You Manage Symptoms Of Hypothyroidism:
Though hypothyroidism is treated with medicine, bodybuilding can also help you manage some of your symptoms.
Bodybuilding Helps You Lose Weight:
Weight gain is a hallmark of hypothyroidism. Though medication may help you get your weight back to a normal level, bodybuilding can help you get there faster.
Resistance training builds metabolically active (i.e. calorie burning) muscle tissue and a combination of aerobic and interval training will help you shed body fat. It's important to alter your training regimen frequently so check the training articles on this site for different exercises you can do to target certain parts of your body.
Fatigue, achy joints, weight gain and depression all add up and may make you want to crawl into your house and hide. But, bodybuilding will make you feel better about yourself. Increasing the intensity of your workouts and weight you are lifting will give you a "can do" attitude.
Of course if you are not on treatment/medication you cannot exercise. I am on NDT, have no idea if I am Hashi but the weight lifting is working for me. It has and still is changing my body shape since March. I have only lost a stone but I have dropped from 22/24 to 16/18 in clothes size.
My information is from...
Marie Spano is a leading authority on translating the latest nutrition and exercise science research into real life applications. Ms. Spano has also helped Olympic athletes, NFL-bound athletes and Fortune 500 executives enhance their health and performance through sound nutrition practices. She is a regular contributor to bodybuilding.com. For more information see: mariespano.com You can look up Hypothyroidism and bodybuilding on this site 😊
I was on Levo for about 30 years, I am well aware of how bad you can feel on that. Althoughsomeone else on here stated that 20% of sufferersfeel ok on Levo. I've been on NDT for just over a year now and I'm still experimenting with doses suitable for me. The weight training has really helped and I just wanted to share in the hope it could help someone else.
I have a similar issue. I was undiagnosed for a while previously so I have to give the thyroxine longer to get into my system. I must say that my levels have come back normal at times but I still feel that there is no change. I have been recommended vitamins and minerals to help with the aches and weight loss. I have yet to try myself but perhaps something to consider.
Thank you all for your info and help; it's so good that you all understand the problems with this illness. I do strengthening exercises for my lower back and knees which have all improved but after a year still going to a fab osteopath who sorts me out and points me in the right direction. She thinks it might be useful to get some xrays done. I always feel wonderful for a few days after hydrotherapy so am joining a gym that has a hydrotherapy pool that's not too far away and try and sort my walking out. I intend to get the supplements and start on one at a time. I already take omega 3, co-enzyme Q10 (helps the mitochondria work better due to the statin I take), cranberry and echinacea at times. First though I must get print outs of my blood tests I've had at my GP practice. They always say "it's fine" or "the doctor doesn't want to see you" so you sail on in ignorance!
I empathize. i'm on levothyroxine 75 mcg. still fat, losing hair and anxious with profuse sweating! the Dr. believes that I am in low normal range, I should be fine. i'm not! I have never had a weight problem! and cannot lose weight. I an live with the weight, but not the sweating! it's embarrassing!
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