One man's life with hypothyroidism

I'm switching back to levothyroxine

22nd March 2017 Paul Chris Jones

After two years of taking natural desiccated thyroids (NDTs), I'm switching back to the standard medication for hypothyroidism: levothyroxine. Read on to find out why. (If you want the TL;DR version, then here it is: I'm switching because I think my NDT is giving me tinnitus.)

2014-15: Levothyroxine

In 2013 and 2014, I had this colourful collection of symptoms:

I was diagnosed with hypothyroidism in June 2014. The doctor prescribed me with levothyroxine, which is the standard treatment for hypothyroid patients. I was fairly happy with this medication even though the doctor seemed slow to increase the dosage.

I began to see some of my health problems disappear. My elbows were no longer dry, red or raw. At a daily dosage of 150 mcg I was able to grow a magnificent beard for the first time in my life:

2015-17: NDTs

During this time I was reading stopthethyroidmadness.com. The gist of this website is that levothyroxine is crap. The website urges patients to take NDTs instead. Apparently NDTs are like ground-up angel wings mixed with fairy dust.

Unsurprisingly, the website made me want to try NDTs. In 2015, I discovered I could buy them on the internet. First I tried Armour, then Thyro-Gold, then Thiroyd, then Thiroyd-S. I was like a kid in a candy shop.

I could raise my dosage at will since a doctor wasn't controlling me. So I steadily increased my dosage. I did this because I was tired of being hypothyroid. I had been hypothyroid for years and I wanted desperately for it to stop.

I was also swayed by statements such as "[don't be] afraid to go higher!" (stopthethyroidmadness.com) as well as this sentence from www.naturalthyroidsolutions.com: "customers were satisfied with their use of the product when they took either 6, 7, or 8 capsules each day".

The highest dosage I reached was ten grains of Thiroyd per day plus 100 mcg of levothyroxine, which is the equivalent of 770 mcg of T4. (That's over four times the amount of T4 that doctors usually prescribe). Unsurprisingly, I started getting symptoms of overmedication. The first thing I noticed was my heart beating hard and fast. My heart rate was sometimes over 100 beats per minute. My girlfriend said she could even see my heart pounding through my shirt while I was asleep. But I thought my body just needed to adapt to the high dosage. I thought my heart rate would return to normal after a few weeks.

I also started getting dry skin on my face and scalp, and especially on my forehead. I'd had dandruff before, but nothing like this. Whenever I rubbed my moustache, beard or scalp, an excited flurry of dandruff would fall off my head like snow in a snowglobe. Here's a photo of my t-shirt after I had been rubbing my beard for several minutes:

And here's a photo of dry skin under my moustache:

But worst of all was the tinnitus. I first noticed it in November 2016. I could hear a ringing in my ears most of the time - even when I was outside on the street. This was a low point in my life. I heard a high-pitched ringing all the time. All the time.

I realised that a high dosage of NDT could be causing the tinnitus, so I reduced my dosage to 2-3 grains per day. But after a month on this lowered dosage, the tinnitus was still there, strong as ever.

The current situation

I still have dry skin and the dreaded tinnitus. The tinnitus hasn't gotten better but it hasn't gotten worse either. At the moment it sounds like a high-pitched ringing plus the random screeches of dial-up internet.

And that's why I'm switching back to levothyroxine: I want the ringing and screeching to stop. And I really hope I haven't caused permanent damage to my ears because I don't want tinnitus for the rest of my life.

There's also the fact that the medical community and most doctors condemn NDTs. So I've been going against scientific and medical advice to follow the advice of a website instead. Jesus Christ.

Finally, here's a cool and terrifying chart showing my dosage over time:

Comments

This story really gave me hope! I am interested in your experience as I also made the switch from levo to NDT back to levo. I experienced many of th symptoms you describe on NDT - racing heart, profuse sweating, nervousness, insomnia, dry and itchy skin...I tried to lower my dose but felt overstimulated on as little as 30 mg of Thyroid-S. I also tried several glandulars (both porcine and bovine) with the same result. I am now back on levo and have a good doctor who lets me dose according to symptoms rather than lab results. I am beginning to believe that levo actually DOES work - provided you take enough. Many doctors seem to keep their patients undermedicated and only test the TSH. I would like to know if you are still on levo and doing fine on it?

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Yes, I'm still on levothyroxine. My dose is 175 mcg. It seems to be working well.

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A few months ago, I just switched from 100mcg Thyronorm to 100mcg Extroxin. Been feeling tired. I'm thinking the Eltroxin doesn't have the same bioavailability as Thyronorm. Can anyone offer any info on this? Thanks.

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Wow, This is a GREAT article and I can so sympathise with what you are saying! I switched from levo to NDT a few years ago after visiting the STTM. At first, I guess the T3 made me euphoric, and I thought I was doing better, but then a lot of symptoms appeared that I first failed to recognise as a sign of (drug-induced) hyperthyroidism: agitation, insomnia, rapid heart beat, high blood pressure, dry, itchy skin all over my body including my scalp and - believe it or not - weight gain. It turned out my blood sugar and insulin levels increased on NDT, causing insulin resistance that led to weight gain. I switched back to levo and figured out the best way to do it for me - to take enough to lower my TSH to the bottom of range, or even slightly below, which in turn puts my FT4 levels at the top of range and my FT3 slightly above midrange. In order to ensure sufficient T4 to T3 conversion, you need to optimise your vitamin and mineral levels as many of them are involved in this process - iron, zinc, selenium, vit B12, vit D, folate...I have come to believe that many people who claim they are "poor converters" (which I once believed I was) have low nutrient levels and that, once those are corrected, levo only could work perfectly well for them. The STTM keeps telling people that everyone will feel better on NDT (or T3), and that if they feel worse on it they must have adrenal fatigue. So they encourage people to either take prescription drugs or glandulars and then start NDT once their adrenal glands are "healed". They are zealots, unwilling to admit that there is no one size fits all. I feel much better on levo now that I am allowed to take enough for my needs (200 mcg daily). I have come to believe that many people who fail to get better on levo simply aren´t on enough, as many doctors seem unwilling to prescribe more than 75 or 100 mcg daily (some won´t even go past the starting dose of 50 mcg daily). My own experience is that, with optimal vitamin and mineral levels, plus enough T4 meds to ensure adequate T4 to T3 conversion, it´s completely possible to live a normal life on levothyroxine only.

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Hey, just stumbled upon your blog, it's fucking hilarious. Interested to know how you're getting on since returning to levothyroxine. Any improvements? Also, have you looked into mixing levothyroxine with liothyronine? Sucks that NDT didn't work for you. Looking forward to most of your posts. All the best.

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Thanks for the kind words, random stranger. I've been back on levothyroxine for a month now. I haven't seen a return of any hypo symptoms; at least, none that I can tell. More good news is that the dry skin on my face has improved a lot. My tinnitus has improved a little too. I'm going to wait for the tinnitus to fuck off completely before I start experimenting with NDTs again.   Unfortunately though, my sense of smell is terrible these days. I couldn't smell a dog shit unless you smeared it into my nostrils. It might be unrelated to the levothyroxine though because my sense of smell has always been capricious. Hypothyroidism is a strange beast.

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Levo made my Tinnitus much worse. One of the reasons I don't take it anymore. If you tolerate being on levo (actually feel better), then don't mess with NDT.

Really fun and interesting blog. Thanks Paul. I'm about to embark on NDT after being on T3/T4 combo for 7 years then denied T3 2 years ago due to stupid NHS/pharma cost issues... grrr. Anyway, I just wanted to let you know that I've now got tinnitis on levo only... so not sure its NDT related! Its a standard hypo symptom, which I found T3 helped with. I'll be following to see how yours goes. Good luck!

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Paul make sure your Selenium levels are good same as Vitamin D and the B Vitamins. I also get this often, have your iron levrks checked also. I loved Armour for some reason it did not me. I take T4 only. Since having low Adrenals fearful for taking a T3. Although a small amount might be ok. Take care Bunny

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Sorry meant to add the Selenuim helps to convert some of the T4 to T3. You appear to have Psoriasis or Exzema. Have you tried taking Zinc? Colostrum might help, Skin conditions sadly are part of Thyroid issues.

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Thanks for the advice. When I get back to the UK I'll do some blood tests through a private company called Medichecks. I'll get them to check my Vitamin D, B, iron, zinc and selenium levels, etc. Easier than going to the doctor.

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don't start experimenting with NDTs again Paul!!. I'm switching to thyroxine too. Ended up in hospital with a pulse of 160 on only 2 1/2 grains of NDTs. I have reduced to 2 grains and am still getting an irregular pulse and thumping heart. I think it has built up in my body. ALL the doctors in the NHS can't bewrong!!! you seem to be doing better on thyroxine so why roch=k the boat?. Good luck.

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Thanks so much Paul for documenting all of your Thyroid experiences in detail. I've been on Thyro-Gold for about 3 years. Before that, I was on Levothyroxine since 2000. I was also thinking of going back to Levothyroxine. I always felt good on Levothyroxine but figured the Thyro-Gold would be better form me since it was natural and contained T1, T2, T3 and T4 and have all the great stories about NDT. I also have had tinnitus in the last few years and what you said really made me think that the cause may be NDT. Plus, Levothyroxine is a LOT cheaper. So please, let us know your detailed experience on going back to Levothyroxine and if you felt better, how so. I would greatly appreciate it. Thanks so much.

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Hey man. i wanted to ask you, did your tinnitus get any better after going back to levo ? and why are you going to experiment with NDT´s again ? also i wanted to ask, did you have any brainfog before going on any of the meds, and if yes, did the medication help with it ? i have brainfog / concentration problems and loud tinnitus. thank you

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I'm still taking levothyroxine and I'm not going to return to NDTs, at least not in the near future. I need to do more research first. I also think there may be good reasons for why nearly every doctor recommends levothyroxine over NDTs. I still have tinnitus. It hasn't worsened over the last few months and in fact, it may even have improved. Either that or my brain is getting better at ignoring it. By the way, I'm not sure if NDTs did cause my tinnitus. The cause could have easily been something else. In many cases, tinnitus doesn’t even have an obvious cause. Before I was diagnosed with hypothyroidism in 2014, I definitely had brain fog and difficulty concentrating. Then when I started taking levothyroxine, both symptoms began to go away. Then I started increasing my dosage, convinced that it would reduce my brain fog further. I reached a dose of 250 mcg of levothyroxine. After that I discovered I could buy NDTs online, so I switched to high doses of those. But I didn't get many, if any, improvements from NDTs, nor from the higher dose of levothyroxine. Though saying that, it's also hard to tell. Symptoms are subjective and all this happened over a year ago. I'm now taking 150 mcg of levothyroxine, which I think is the ideal dose. If I go lower, I get depressed, and if I go higher, it feels like my heart is beating too hard.

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Tinnitus is a common symptom in adrenal dysfunction. B vitamins, magnesium and zinc are also possibilities too but it really sounds to me like you were stressing your adrenals with the high doses of NDT. You were taking way more than an average healthy thyroid produces in a day. I'm all for self treating if you have the knowledge and do the research and don't have a good Dr but you should always start low and slowly titrate up about every 2 weeks and that should also include ordering labs for yourself to help guide you. People self treating and bodybuilders that take it for weight loss and energy that don't know what they are doing and who end up taking too much and start having problems, including possible serious problems like heart attacks, death, adrenal dysfunction or even failure, sex hormone imbalance, hypogonadism, permanent damage to their own thyroid and in the case of bodybuilders permanent damage when they had a healthy thyroid to begin with. This is why NDT and T3 gets the bad rap it does because of people who abuse it when they don't really need it and those who try to self treat when they don't know what they're doing. Many Bodybuilders try to get Drs to prescribe them T3 and they dr shop until they find one who'll give them what they want or they order online, then some have complications or worse and it's the med that gets blamed. This is why so many thyroid patients then get refused and shut down when they ask for T3 to be added in with their T4 med or ask to switch to NDT. We aren't looking to abuse it, we just want to replace what a healthy thyroid used to give us but too many Drs are scared to.

Also, I just noticed you said your sense of smell isn't good. That is a common symptom of low zinc, loss of taste is too. I would get RBC zinc and RBC copper tested....they need to be in balance with each other so both should be tested.

Do you not get your bloods checked at all? This will determine your best dose of Levo. Too much Levo can in some people actually give you the same symptoms as too little (going from Hypo to Hyper)

^^THIS. It's not the NDT that was the issue.. it was overdosing on it.

Been there, done that. Magnesium for tinnitus. Try various types of mag to find which works best for you. That is the key, because many mag's cannot be absorbed. I learned this after finding many hypo are mag deficient. Mag Glycenate works pretty good for me. Tip: mag and calcium in balance.

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Hi paul i am a hypothyroid patient in Korea. I am just curious as to why you increased the NDT dosage so high initially. Was it because you didnt feel good on somewhat lower dosage? I have just started taking thailand thiroyd and it does feel somewhat weaker than the synthroid and cytomel combo i was on before even tho i am taking the same dosage.

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I guess I had unrealistic expectations about hypothyroidism medication. I thought if I could reach the right dosage, then I'd become a new person, a confident extroverted person with a smile on my face and a song in my heart. I thought all my life's problems would be solved and I'd bound out of bed every day with boundless enthusiam. That's why I kept increasing my dosage - I kept thinking that a new happy life was just one dosage increase away. Turns out that wasn't true. I found out that hypothyroidism medication increases your overall happiness just a little, at least for me.

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I hope you're doing well! I am one of the rare people who took NDT before ever taking a T4 med. My hypothyroidism is more subclinical and I don't test positive for antibodies. Anyway, I couldn't tolerate NDT.... I guess I'm just too sensitive to the T3. It makes me feel manic and weird in the heart and all of that. I've tried the tiniest doses. So I just went to an endocrinologist and he said stop immediately and he put me on levothyroxine 25mcg. I feel like death now. I'm wondering what your experience has been and if it just takes a while to build up and get used to it. Maybe stopping the T3 containing med so fast made me crash? Trying to be patient!

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Hi Lauren, 25 mcg is a tiny dose so perhaps you'd benefit from more. Also, I've read that levothyroxine has a half-life of a week, which apparently means it takes a month for patients to feel the full effect of a new dose. So in theory, you should feel a gradual increase in your wellbeing over the next month while the levothyroxine builds up in your blood. Paul

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how are you feeling on T4 now? after 4 years trying NDT i am going to try 125mcg of Synthroid

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Hi ? I have switched from levothyroxine 50 MCG to Thyroid-s 30 mg. My heart ❤️ is beating harder and I am having problems sleeping. Is this normal. This is the third week and I was wondering if the side effects will get better? How long does it take to kick in? I guess everyone is different just wanted some feed back. Thank you. Vikki Rainbows ?

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Tinnitus. In my case appears to go if I don't eat starch. At all. Including starch in tablets/ medicines. (Look up leaky gut, Carol Sinclair, Alan Ebringer, klebsiella, proteus, gluten, nsd, etc etc.) I also get a tinnitus reaction if I eat too much of some sugars. I have my suspicions about cane sugar (which I believe is sprayed with glyphosate?), but not done any proper experiments yet. In the meantime I'm only using coconut or beet-based sugar, or organic if I can find it. And not eating too much anyway.

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Hi I’m going back to Levo .75 because I’m feeling bloated gained weight feel depressed . I was on NT for 6 months and now I can’t even find it so just going back to Levi ..any advises on switching ?

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I feel the same way, I stopped Levo .50 due to all the scary reviews on it but for 2.5 years I was on it I didn’t really have any issues. I lost weight and was able to keep it level. I stopped taking and then started on NP thyroid .30 and I know I need to give it time but it’s 6 weeks plus now and I can’t regulate weight at all and even though my numbers are ok on paper I hate it. I’m bloated all the time. I’m scared to go back to Levothyroxine though

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Wow, you really were taking way too much NDT, much you didn't have a heart attack! OK so GP's won't prescribe NDT because it's not a registered drug in the UK but the main reason is the same old one which is £££, Levo is cheap as chips and they are hand in hand with the big Pharma who produce it. Some GP's prescribe NDT if you are lucky but mostly not. I experienced all your bad symptoms with heart palps with Levo now these have gone since NDT, I only take 1 grain per day and this works for me. Tinnitus is not your ears but brain, as you'll have discovered this has no cure and you do learn to live with it, sad to say it'll never disappear but fade and get louder according to your triggers i.e.stress etc, it can affect anyone and I have had it since abusing my hearing in the 80's, I went to a conference recently, you just need to zone out of the noise if you can. Stinks I know but Levo ain't gonna change it!

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I think your problem is caused by high t4 from ndt and this t4 is converted to reverse t3 and make you hypo. If this is true levo will not help much but t3 only can help. Maybe you cant convert t4 to t3 and you need only t3.

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Hi Paul, I too am thinking of switching back to Levo, can I ask how you are feeling right now?

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I'm actually feeling good. I'm taking 150 micrograms of levothyroxine every day and I don't have any complaints about it. It makes me wonder why some people are so negative towards it.

Hi and thanks for the article. I’m 3 months in on NDT and feel awful. Shaky, anxious, adrenaline surges, dizzy. I really wanted it to work for me also but it just has not. I want to switch back to synthroid but I don’t know if I can do a straight across switch or if I need to wait. Thoughts??

Hi Paul, I had tinnitus when I overdosed on 112 mcg. levothyroxine, but I also was diagnosed with a B12 deficiency at the same time. When the thyroxine dose was slightly lowered and B12 corrected the tinnitus went away. A few years later I switched to 1 grain of Armour for 3 years, but never felt right. Now new doctor has me on 88 mcg. thyroxine and I feel under dosed. :-( I think 100 mcg. is where I need to be. It's amazing how the smallest change in dose or even potency of the drug for that matter, can make a huge difference in how you feel.

I just switched straight back and didn't have any problems. None that I can remember, at least.

Hey Paul, Thanks for the article. I recently had a brief stint with NDT, also believing that it might make me into a Stronger, Better, Healthier Man™. But I started getting weird symptoms - I couldn't drive on the freeways without feeling a horrible disorientation and anxiety. The symptoms kept getting worse and I was scaring the shit out of myself. I realized that I was probably doing just as good, if not almost just as good, while on Levothyroxine and going to the gym consistently (minus all the high-maintenance of an NDT lifestyle). BIG QUESTION HERE THOUGH: What was your process for getting off the NDT? Did you go cold turkey, or just slowly drop the dosage? How soon did you reintroduce Levothyroxine back into your system? I'm about 3 days post-NDT. On the first day, I was having heart palpitations and anxiety at noon. The next day, I had the same thing but less intense. Today, I took ashwaganda to deal with the symptoms and it seems to have helped substantially, but after about 6:00 pm, my anxiety was coming back to me. I'm just hoping that the symptoms gradually wear off, but I'm wondering if I should introduce Levothyroxine back into my system as soon as my prescription comes in. I know you're not a medical professional, but there's very little experience from anyone on this subject.

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I just immediately stopped taking NDT and switched straight back to levothyroxine. I didn't slowly drop the dosage of the NDT or slowly increase the dosage of levothyroxine.

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Thanks Paul for your great advice... it is helping many of us with hypothyroidism. I am back on Levyothy. to after a year on natural dessicated.. It didnt work my doctor told me because it is unstable.. and keeps changing (comes from an animal).. so Im on 100 m a day.. Im wonderful however if someone can give me some advice on cytomel.. Thank you for your help and all the input of others... a great on line Thyroid community.. I also have Hashimotos!

But How much levothyroxine did you start taking a day? (I hope the doctor agrees to give me the prescription today). NDT is not good for me either.

Paul, how are you feeling these days. I have been on a roller coaster with NDT meds for about 5 years and have spent a fortune on meds, labs, Suppliments. Still do not feel well, thinking of switching to Levo.

I've been feeling fine on levothyroxine at a dose of 125 mcg. I ran out two days ago though so I'm using Thiroyd until I next visit a doctor.

Hi Paul, Thanks for sharing your thyroid medication story on here- very informative and reminded me it pays to have a sense of humour when faced with these struggles! I have been on Levo for 14 years, since I was 12. Started on 50 mcg a day and soon went to 75 and been on that since, labs always stable. Also had itchy scalp since I was about 12 too (can't remember if it came after I started taking meds) and in the past 3 years my ear canals are terribly itchy too. As I was so young when I was diagnosed, it's difficult to know the difference between life on or off Levo. Also had my T3 checked recently which was within range. After learning about Hashimotos and trying to address my health, I was keen to switch to NDT to give my body a break from the fillers that I am trying to eliminate (lactose and maize) and see whether my skin issues are an allergy to the meds, but after reading your story it seems like a right palaver to source NDT and I am scared of the symptoms it may cause... maybe this is how I have to operate, despite having had anxiety for years and years. I am optimistic that different medication could help it. Do you think it's worth a try or would you stick to Levo if my levels are stable? Thanks and best wishes, Nikki

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Very interesting post, thank you so much, Paul! It's rare to go in this direction; most of the time, people complain about how awful they feel on T4 only drugs, and then they always get replies from happy users of either synthetic T3 or NDT who tell them how much better they'd feel if they only made the switch...! I was diagnosed with hypothyroidism (Hashimoto's) 18 years ago and have since tried almost every drug available; from synthetic T4 to synthetic combo drugs and NDT, and every possible combination thereof. No matter what I try, I always end up going back to T4 only and, like you, I have found 150 mcg daily to be an ideal dosage as it keeps my TSH low-normal (around 0.5) and my FT4 levels in the upper third of range. My FT3 levels end up around midrange but, unlike what the STTM and other NDT friendly sites claim, that does not make me feel bad...quite the contrary. I felt overmedicated and hyperthyroid on almost any dose of NDT or Cytomel, and even as little as 1-2 grains of NDT daily (so, basically, 9-18 mcg of T3) was enough to make my heart pound and cause me to sweat profusely all day long. I have no idea why some seem to do great on NDT (some people seem to be able to take 7-8 grains of NDT daily without problems, but I know that would kill me) while others, like me, seem to do better on T4 only, but there it is: I honestly don't think I could feel well on any amount of T3. I am going back to T4 only, 150 mcg daily, for the last time I hope, as I fear it is tiresome for the body to constantly go on and off drugs containing T3. I really appreciate reading about experiences like yours, as it proves I'm not alone in finding T4 only drugs better than any drug containing T3. I also agree with what you say about the STTM being too dogmatic...I no longer put much credence in what they say.

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Anna, I also have Hashimoto's. Have tried all the meds, would like to ask you some questions if you don't mind. Please contact at your convenience.

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Wow, I´m not alone. How difficult for all of us trying to understand and trying to get the best medication. At this point I will pray for a miracle to happen and keep taking my t4 only. Have a great life. P.D. I live in Costa Rica

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Thank you Paul, I learned much more by reading you.

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If you have low iron or adrenal issues you will have problems with NDT. You need to address both issues. Go to the website Stop the Thyroid Madness for direction on how to do it.

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Is this a joke? You massively overdosed yourself out of ignorance, and then blamed NDT for being bad? WTF

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I recently went back to Levothyroxine from Cytomel. My hair is finally normal again, I thought that would never happen. I had tried NDTs after being on synthroid for years, my doctor kept upping my dosage and I felt worse and worse, the worse I felt the more he would raise the dosage. I finally quit seeing him and quit taking it, I switched myself to Armour, but didn’t feel better, tried Thyrogold and felt better and my hair stopped falling out but then they had some shipping issue or sourcing I don’t remember. I switched to cytomel because I was able to get that, it was ok. I wasn’t miserable, I gave up on my hair ever being normal again, I settled for feeling meh most of the time. Then Trump closed the borders and my meds were held in customs for too long, I had to do something so I found another doctor who agreed to prescribe the cytomel but suggested I try synthroid again at a much lower dosage than the old doctor had me on. I was skeptical but agreed to try it, after a few days my hair started to shine and feel healthy, I could brush it without it breaking, the frizz disappeared. After about a month, I started waking up easily and feeling energized, no brain fog. I have been back on it for a year, my weight doesn’t go up and down, I have completely remodeled my house, my face isn’t puffy. I don’t feel like superwoman but I feel normal and that’s a great feeling.

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Paul Chris Jones is a writer and dad living in Girona, Spain. You can follow Paul on Instagram, YouTube and Twitter.