“If you could turn the clock back to when you were first diagnosed, would you even have bothered trying the synthetic Thyroxine (T4-only) or would you have jumped right in with NDT (Natural Desiccated Thyroid)?”
The above is an interesting real question asked by a new thyroid patient recently to other thyroid patients in a forum.
She is in the dilemma that so many NEW hypothyroid patients find themselves in when their doctors are pushing T4-only, yet patient experiences as outlined on STTM are saying that NDT was a better treatment for all too many. WHO TO BELIEVE?? Sure, some state they do well on T4-only, but is there more to the story? Here are the answers from many different individuals in that string, plus more:
- I would definitely go directly to NDT. NO doubt about it!!!
- I never would have taken synthetics if I had known then what I know now. I have spent the last 15 years or so (maybe longer including the undiagnosed time) not in optimal health.
- I agree 100% with the above two comments!
- I would never have started on synthetic. Straight to ndt!
- I was diagnosed 6 months ago. I switched after 2.5. I never felt any improvement on levo. If anything felt worse
- I have been on over 9 different meds for the last 5 yrs. I found the STTM site, switched to NDT and I will never go back to all those drugs/meds! Life is actually returning to my body! The dr’s can keep you sick! Just my own personal experience!
- I agree with the above. Had I known I would have never of taken Syncrap (Synthroid). Now I’m trying to fix the damage that has been done.
- I have only ever been on synthetic (nine years), first Levoxyl and most recently Tirosint. If I had to do over, I would have tried NDT first no doubt.
- On Eltroxin, heart issues were chest pains, numbness on my left arm, tachycardia, inverted t waves on the ECG which led them to believe i had a heart attack. I had a crazy fever and was doing reverse t3 clearout when that happened, but had it not been for synthetic, i believe i would not have gotten that bad. After taking synthetic for just a few months i also became thyrotoxic with large amounts of t4 pooling in my blood which ultimately meant to me i had conversion issues.
- I’ve been on synthetic for 15 plus years. At the time I was desperate and even though I’ve done mostly natural on a lot of other fronts… I wasn’t aware there was an alternative. It seemed like a lifesaver at the time, as I was desperate. Now, with all the additional issues, which may likely be connected, I’d go with the natural for sure.
- I took Synthroid, Levothyroxine and Cytomel… none of these synthetics helped me. I think my fibromyalgia diagnosis 15 years ago was due to an undertreated thyroid on Synthroid. I lost a LOT of hair as well! Armour’s resolved my hair loss within a week. It’ll take a while to grow back, but at least I’m not losing handfuls anymore!
- I would have gone for Natural…I was HORRID on Synthroid
- A year ago I got so sick I could barely walk to the bathroom. I couldn’t breath, shower, walk, and literally felt like I was dying. MY levothyroxine was raised from 225 to 275 which bought my TSH from 15 down to 2.5 which my NP thought was “great” — all the while I’m telling her I feel like I’m dying. I will never ever go back to SYNTHETIC (T4-only)!! Only wish I had even known there was NDT 25 years ago. I JUST heard of NDT 6 months ago through a Yahoo Group and then thank GOD I found STTM.
- If you have a choice ndt is a great option.
- I would too have gone straight on NDT. I spent 2 yrs fighting with my levels (going from hypo to hyper) while taking Synthroid and Cytomel. Not one of the 5 doctors I saw could ever get me regulated. Within 3 or 4 months after I started self-treating (because I was living overseas where they don’t even have NDT) I was optimized…lost almost 40 lbs and felt wonderful.
- I would have absolutely gone with NDT first…
- If I had stayed on Synthroid for 6 months, I would not be here now because I would have committed suicide. I was thinking about it at 2 months. Thank God I discovered NDT (Natural Dessicated Thyroid) hormone then and switched.
- I was on Synthroid for a good 20 years and would have said I was doing great, energy-wise. But I never realized that my rising cholesterol, need to nap and antidepressant was due to Syncrap being inadequate. I wouldn’t do it again, in spite of having better energy than others.
- I would not have tried synthetic thyroid first. NDT closely resembles the human thyroid hormones. NDT has T1 and T2 (which they are not even sure what the purpose of these thyroid hormones are yet), T3, T4, and Calcitonin. Calcitonin is important for bone strength. People who have taken synthetic, T4-only thyroid have eventually developed osteoporosis. Our bodies need all the ingredients in natural thyroid.
- That’s easy. I would have started on desiccated. Why take the risk when T4 has caused so many problems for so many?
- Yes. I am one who was started on both T4 and T3. I thought it was the right thing. When I switched to Np Thyroid, it was hugely better. It’s true what peeps say about it better even better. I do have good iron and cortisol.
- Yes, yes, yes.
Another gal mentioned she would have gone to to the high iodine protocol first (on the premise that her hypothyroidism coud have been from low iodine).
Another said she didn’t do well on NDT, but she and any others in her shoes can discover why here i.e. it’s not about NDT–it’s about two common issues that NDT will reveal, and if treated correctly, one can soar on NDT!
Another felt it was a tough call due to some doing well on T4-only…but you have to consider that many aren’t as well as they claim (and are taking meds to bandaid the symptoms of a poor treatment), or they will and do see more problems crop up the longer they are on, in spite of doing well now.
Yes, if I could turn back the clock, I would have had better life experiences.
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28 Responses to “If you could turn back the clock, would you have started on NDT instead of T4-only??”
Kay
Hi Janie — After three years on synthetic T4, I was excited to finally start on NDT earlier this month with 1 grain, and began to have some welcome symptom improvement within a few days. I did notice a significant increase in fatigue, but assumed this would resolve with time and adjustment. Two weeks in, we raised the dosage to 1+1/4 grains, and immediately all of my symptoms came back with more severity than I had experienced even prior to starting on the synthetic med. The fatigue also worsened, and is now nearly debilitating. My T4 is currently at the high end of the normal range, which is typical for me. We also checked my RT3; it came back at 48 ng/dL with a reference range of 11.6-29.7. My Free T3/RT3 ratio is 6. Additionally, I now know I have low iron and high cortisol. I’m working to correct these last two concerns now, and in the meantime we’re decreasing to 3/4 grain due to the RT3. My question: Is profound fatigue a symptom encountered often by patients who are unable to tolerate even a modest increase in NDT due to iron and/or cortisol issues? Or is it more likely to be the RT3 at work? It’s like nothing I’ve ever experienced, even with chronic hypo exhaustion, and no one I’m working with has noted it as a response to NDT before. Many, many thanks for any insight.
Janie Bowthorpe
Hi thereKay. Two ways to answer this: 1) It’s very normal for these lower doses to cause more fatigue, because being on NDT will dampened your normal feedback loop. i.e. your body thinks your thyroid is working again, so it knocks on the door of your thyroid less. 2) But it’s also a bigger problem when you are making that much RT3. RT3 is an inactive hormone which hogs the thyroid cell receptors and thus, T3 doesn’t get to the cells well. So until we can correct that cortisol and iron issue, what patients can do is move over to T3-only, such as starting with 5 mcg and dosed three times a day approx every four hours apart, and whatever they can tolerate (i.e. so they don’t pool). Share all this with your doctor and keep that excitement, because once you adequately treat that low cortisol (saliva is needed to see exactly what is going on, we have found) and bring up that low iron), you’ll soar on NDT. 🙂
Maira
I recently started taking NDT and I gained weight, any suggestions??
Janie Bowthorpe
Maira, you have to raise it and raise again. When staying on too low a dose, you actually make yourself more hypo. Study this page: https://stopthethyroidmadness.com/natural-thyroid-101
gisele
what IS NDT>???? & yes I tried searching the site
Janie Bowthorpe
Gisele: https://stopthethyroidmadness.com/natural-thyroid-101
Eaamon
if I could turn back the clock… I would have never removed the iodized salt from my kitchen table and replaced it with sea salt in the 1980’s.
that might have been my turning point to eventually being put on synthroid in 2006. since then I have been eating a lot of sea food but slowly started to edge away from it. mainly too many stories about polluted waters and fish now getting cancers. I may have been getting enough iodine from it. Now oil in the Gulf of Mexico and the Radioactivity from Japans nuke spill…
now knowing how much T4 needs it. it, T4 uses 4 isotopes of iodine and it breaks down one isotope to become T3 by the body.
during the 1980’s I had been reading the life readings of psychic Edgar Cayce. he did some 14,000 reading for people, mostly health readings. I now remembered some he did for people on the thyroid. he most always recommended they use atomidine and even gave a doctor instructions on how to make it. today it is known as Nascent iodine. he prescribed 1 drop in a glass of water for 5 days and 2 days off. the one drop of atomidine is the equivalent of 4 times the daily recommended dose of the USDA. and no NDT from what I remember.
since 2006 ( somewhat depressed feeling at that time) when I started synthroid and being upped constantly since then. I questioned my doctor/DO why do we not try to treat the thyroid rather than use synthroid? he said you can’t. (dumb answer now!) my TSH was high. funny thing 4 months earlier I was tested and my T4 was normal. it is possible since my T3 was never measured, my body was not processing the T4 properly to T3.
after years on synthroid substituted with levothyroxine and then to the latest generic version of it. I could not understand why the low grades of synthetic T4 did not cause any issues. I eventually started to break out with skin rashes..I thought it was eczema. until I saw juicing joe from Austrailia (video-Fat, Sick and Nearly Dead.) he was quoted as having “Urticaria” ( http://en.wikipedia.org/wiki/Urticaria ) and broke out with rashes/hives all over. eczema to me on my hands or toes was normal. however it was from head to toe now. was treated with all kinds of salves and prednesolone. went away temporarily.
then a light went off, where are my papers for side effects from levothyroxine. low and BEHOLD I found urticaria as a side effect. why did my doctor not catch that??? I was up to 125mcg at that time. this not to mention I lost 70% of my hair…..
since I was titrated up to a high level of synthetic T4…..I am sure it stumped my thyroid into not working and ended up putting it into atrophy (wasted muscle.)
I can only hope that iodine will rejuvenate it again. time will tell. I did quit the levothyroxine after cutting slowly down the amounts to zero. I could not stand the thought it was making me so sick.
then the fun started, I was even worse off. I was experiencing symptoms listed at Johns Hopkins site for hypothyroid people to the max. think I almost killed myself with a heart attack. but started to use the iodine supplement and got some nutri-meds caps since I found out Armour was not available over the counter. it helped a lot and started to get my life back.
since then I found out from here and a few other places that Forrest Labs bought up Armour. funny thing they supplied, my generic levothyroxine until many others came out with a even less expensive generic. I thought they did away with Armour to sell more of their meds until the less expensive generics came on the market.
now at a new quandary “AS WE all on NDT are.” Forrest labs was recently acquired by another company. I’m a investor and heard this a few months ago. just as I found a physician who prescribes Armour. tried it for 2 month now and just got upped into NP thyroid….still a low dosage 1.5 grain from 1 grain. as I read about ERFA and Acella changes. I hope iodine heals my thyroid at this point…..
what is next?
Lee Anne
A corporate health nurse tried to put me on Synthroid without doing anything more than a telephone consult. Both I and my doctor refused – me because the idea of taking a synthetic drug worried me, and my doctor because she didn’t think I had a thyroid issues. Six years and many doctors later, I’m just now getting started on NDT, never having to go the route of Synthroid, thank goodness. Hoping to have as much success with it as many others have had!
Rose
I would probably not have. My initial experience with Synthroid was great. Most of my symptoms abated and I lost 50 pounds in a year. However, after about a year on Synthroid, everything went south. That’s when I tried Armour, and even it is not perfect.
Janie
Rose, Natural Desiccated Thyroid has nearly perfect for many, many patients over the years. But you have to raise it high enough…and even more importantly, you have to have good iron and cortisol to make it work perfectly. https://stopthethyroidmdaness.com/things-we-have-learned
Isabella
I agree with Rose, based on my experience for 3.5 years on NDT. I’m on 120mg (60mg morning/60mg at 1pm) and still don’t feel better. I have been on this dose for app. 3-4 months.
There are days when I think that I’m finally going to feel *normal* but it’s short lived.
I have had full panels of bloodwork done along with another test via my ND, which was expensive, but helped to understand what else was going on. My iron, vitamin D and B12 levels are great and I have been taking high brand names of supplements, which have less fillers. However, I haven’t been able to lose weight, my hands/feet are cold (mostly right side), experience insomnia frequently, have low energy/stamina, low appetite, brain fog, fatigue, low motivation, weight gain, dry skin, hair loss, irritability and I feel anxious all the time as I’m tired of living this way.
My Free T4 has been low since 2019, when I started NDT. The range on my bloodwork results is 9-19. All my results have been 10 since November 2019 except on two separate occasions when it was 8 and 11.
I started at 30mg then, 60mg, 90mg and now 120mg, but my Free T4 always remains low. My Free T3 bounces around between 3.4, 3.9, 4.0, 4.5, 4.7, 4.9 to 5.7. The range on my bloodwork results is 2.6-5.8. My TSH is often low or very low at 0.01, 0.02, 0.06, 0.13, 1.04.
So why am I not feeling great? Why can’t I lose weight? Why are my hands/feet still cold? I have been on NDT for a long time and still struggling.
p.s. I’m from Ontario, Canada and our NDT is from ERFA.
Janie Bowthorpe
Isabella, it’s not common for only two grains to get your frees optimal. And your low free T4 underscores that you aren’t optimal. Your free T3 results have no dates, so not sure what to say about them, other than several of them can be revealing that you have a cortisol problem. And having the latter can mean you doing this: https://stopthethyroidmadness.com/pooling Having a cortisol problem prevents you from getting out of the mess. It needs treatment.
McKenna
I was very lucky to find a doctor, a naturopath actually, that specializes in thyroid conditions. When I first started going to her back in March, I was experiencing most of the hypothyroid symptoms: extreme fatigue, cold feet, depression, etc. My naturopath ordered a series of blood tests, including TSH, free T3 and free T4. She also tested my iron level, which turned out to be normal. She diagnosed me as hypothyroid and sent me home with a prescription of RLC Labs Nature Throid. She only started me out on a 1/2 dosage. Within the first week I started feeling huge improvements. Suddenly I actually had energy! I felt motivated to get out of bed in the morning and be active, which was something I was having a very difficult time doing before (and by the way, I’m only 23!)
I was on this 1/2 grain dosage for several weeks, probably 4-6, before the doctor decided to raise it up to 1/2+1/4 of a grain. She didn’t want to give me too much and overwhelm my system and the progress that had been made. So I started on this higher dosage. Within a few days I was feeling anxious and like I drank an entire pot of coffee all by myself. So I went down to the upped dosage (1/2+1/4 grain) every other morning. This worked for about a week or so. In fact, I felt even better than before! I was on top of the world, I had SO much energy, I was happier than I’d ever felt. Then, about a week after that, the anxiety crept back in, worse than before, and I started having obsessive thoughts that would stress me out even more. I couldn’t relax, I was crying a lot; I was just a basket case. The best way I could describe it is that I felt like I was bipolar (or what I would imagine bipolar to feel like!)
Recently my doctor decided we should up the dosage again, but I had similar results to the first time we tried to do that. So I have been stuck on this 1/2 grain dosage for months now. I am back to feeling fatigued again, along with the depression and some anxiety. I read on this website that a common mistake doctors make is not upping the original dosage after a few weeks. Could this be what is happening to me? My doctor is sort of at a loss. She said she hasn’t encountered this before when trying to increase the dosage, especially with the small increment of only 1/4 grain added to a 1/2 grain! I know my body and I know all is not balanced with my thyroid. So what can I do from here? I’m at a bit of a loss myself. I’d just really like my energy level to go back up to normal. It’s difficult living the typical life of a 23 year old when my energy is this low. :/
Janie
This is why we learned that overall, starting doses should be one grain, not less, and raises every two weeks or so, not more. The vast majority are optimal in the 2 grain area and much higher. Janie, for example, is optimal at 3 1/2 grains. But you also have to make sure you have good iron and cortisol. Read https://stopthethyroidmadness.com/ndt-doesnt-work-for-me
Jen
I knew as soon as I was diagnosed 7 years ago that I wanted NDT and have struggled to find a doctor who will even listen let alone prescribe. I do not get on well with T4 only and as a consequence my quality of life has been affected detrimentally.
Frans J.L. Zegers
YES I would! 1000 times yes! It would have prevented my weight gain which caused my sleep apnea which caused my heart failure and hearth rythm problems which caused me to receive a cardio-versie which caused me to be on bloodthinning medication – aceconoumorol – under observance of the Dutch thrombosis service… having to …and I can go on and on. The robbery of the quality of life by this criminal T4 only protocol and TSH testing is murder! I have been murdered by the ‘disease-maintenance system’ disguised as ‘health-care’ for possible close to 30 years. 15 of which I have been prescribed T4 thyrax only and 15 of which I was not diagnosed by the Dutch doctor not hospital though my heart rate was 120 in bed, and my hands trembled, etc etc… It was an AMERICAN doctor during my school in Santa Rosa Beach, Florida (beautiful Emerald Coast! But hurricane Opal made us evacuate one time) , who I saw for my bruised ribs who dicovered my hyperthyroid. The Dutch doctors NEVER considered checking my blood of T4 nor T3 etc. If I had died, they would have said it was due to a heart attack. Not so.
Cynthia
Without a doubt!
Dawn
I would have asked for tests on nutrients then tried NDT first. I have gone on a slippery downward slope for 30 years of badly treated Hashimoto’s.
Patty
Natural thyroid is almost always the best way to go. I was seriously undertreated with Synthroid for over 20 years. However, when I tried NT, and I tried 3 brands, I kept getting allergy symptoms although I’m not allergic to pork. After a great deal of research, I discovered that NT has a large amount of free Iodine while synthetic thyroid has no free Iodine. In my case, I am seriously allergic to Iodine, as in anaphylaxis. Even the tiny amounts present in NT were enough to cause itchy mouth and lips and throat swelling. I know of one other person, with same Iodine allergy who cannot take NT. I have done well, after several months on T3 only, on a combo of synthetic T3 and T4. Definitely, if no problem with Iodine, would take NT. Just wanted to throw something out there because Iodine allergy is uncommon but not that rare.
Gretta
Yes, and I forgot to say that though I am still searching for a right NDT that works well for me, if I could, then I would turn the clock back to retrieve these 5 Years of my life that I lost whilst taking T4 only, and then II would immediatelly start with NDT!! Great Thanks for your Life Work- STTM !!
Gretta
Hello all, I am looking for a possibility to get RLC Nature-Throid in Europe. I’ll have a prescription of my endocrinologist. I was already on Armour and ERFA, but I did not well with them. Therefore I would like to try with NT by RLC, but cannot find out where I can get it. I hope anybody out there cann help me. Many thanks in advance.
Janie
Gretta, if you didn’t do well on two brands, you may be here: https://stopthethyroidmadness.com/ndt-doesnt-work-for-me
Jeannine
I lost my thyroid due to cancer 23 years ago. The first 2 years post surgery were a nightmare as the 5 endocrinologists I saw would only treat me with massive doses of T4 on which I was profoundly hypothyroid (body temp 94F, pulse 30, BP 80/40) and close to comatose. The only thing T4 did was lower my TSH to less than 1 and give me palpitations. Not one endocrinologist paid any attention to my vital signs recorded on my record or woiuld accept that I was very ill. Finally an internist friend recommended that I take Cytomel (T3) and I was back to normal in 2 weeks. Thyroid extract doesn’t work for me because the T4 in it blocks my uptake of T3 (a genetic problem) but T3 alone (50 mcg spliit) with a low dose of T4 (50 mcg) taken at a different time of day works very well. If your endocrinologist will not listen to you try to find an internist that will. They seem to worship (meainingless) TSH values less.
Pete
Yes.
JennyWren
I have lost 40 years of my life thanks to those useless and mercilessly patronising doctors. Yes I emphatically would have started on NDT immediately – T4 was worse than useless after the first couple of weeks. Without the STTM site and the online groups I would have been dead by now (as God is my witness). Thank you Janie and all those who run the groups – you really are LIFESAVERS!!
Carol
NDT, please! This is going to be my first request of my new endo next week!
jaime
I would’ve started on NDT immediately, no “ifs”, no “ands”, no “buts”
Unza
1000 x YES