Would love to hear back from people combining N... - Thyroid UK

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Would love to hear back from people combining NDT with T4/Levo

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Hello everyone 👋

I am currently taking NDT and a bit of levo, still tweaking and trying to understand what to do next.

Could you please share why you added a bit of Levo and was it successful, did you have to reduce your NDT a lot, etc. Any info will be much appreciated 😊

I just don't do very well with low FT4 and seem to always have a highish FT3!

Thanks!

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jamesal0 profile image
jamesal0

Hi TC Yes I did it for a while. I took 25mcg Levo plus about 30mg NDT per day. I found the Levo kept me warm. Really though I was just being a big sook and not raising my NDT. At the time , I was struggling with reflux and NDT. But that seems to be fine now I am up on 120mg NDT. Currently taking 60mg just before bed with milk and cereal. Then another 60mg about 3am with a banana or sultanas etc. I never swallow NDT pill and wash down with water - gives me re-flux or acid. Loosing a few kg now I am on proper NDT dosage too. I still have to jog every day nearly, but not like on Levo you just bloat.

in reply to jamesal0

Thank you for this, so more NDT was better than that bit of Levo? I am struggling with highish FT3, not yet sure how to balance it yet as my ft4 needs to be higher than 24% I had on over 2.5 grains of Armour, I felt really hypo.

jamesal0 profile image
jamesal0 in reply to

Hi TC you are taking a truck load of NDT so I doubt if you need any more. I would stop worrying about your blood tests and start focusing on how you feel. NDT works allot better that way. Constant Heart Palps - too much, Tingles - too much, feeling cold - not enough, putting on weight not enough, loosing weight to much, anxiety usually too much. You also have to do 30-60 min huffing and puffing exercise per day to shake all the junk up so your kidneys and liver can do their thing and dont forget to plenty of drink water.

in reply to jamesal0

I used to be on 4 grains at some point, and was feeling very good, was not overdosed according to symptoms and bloods, I think we all may be a little different. Have you ever had insomnia? I have that, I have weight gain, water retention, feel hot and cold, but I also get anxiety, fatigue. I personally think this is not a good balance. Cholesterol is high too, but when I increase NDT after 5-6 weeks I start to get hot, wake up every hour, feel shaky and anxious. Then on testing my ft3 is generally between 80 to 100% of range after 24 hours of taking pills, ft4 always below midrange.

jamesal0 profile image
jamesal0 in reply to

Hi TC An 80-90kg person with some thyroid function needs about 1.5 grains. Maybe 2 grains if you have a complete thyroidectomy. It's just a chemistry thing for every kg of muscle and bone you need so many mg of NDT.

The thing is NDT is sort of addictive, it gives you a high and an energy boost. This is because it dilates your capillaries and lets more blood into your brain, lungs etc. So people keep on increasing looking for an optimal dose - when in reality they have gone past optimal and are now over dosing - or suboptimal. Your body then needs to dump Thyroid and it does this by creating RT3 (R stands for reverse) and you wee it out. The problem is RT3 looks like the T3 molecule and binds and blocks with the T3 receptors in each cell. It’s a means of your body protecting it’s self from a runaway thyroid (hyperthyroidism) condition. So you take all this extra NDT and still have low thyroid symptoms. And you get extreme Anxiety as a bonus. Then you go to the GP and he/she puts you on beta blockers or worse - arrrhhhhh….

Insomnia - yes I get it. I only sleep about 6 hours a day on a good day. Thyroid causes (penty of other drugs cause insomnia) - very low thyroid and very high thyroid . I get it when I take too much testosterone supplement.

Weight gain - normally not enough thyroid

Feel hot and cold - too much thyroid. And thyroid at the wrong time. You take NDT slowly through the day as you need it. 30mg for breakfast 30 for lunch, 30 for bed etc. If you take too much your head will feel hot and your feet / hands will feel cold. This is because you a poisoning your nervous system by pooling T4 hormone and you body can’t get rid of it quick enough.

Anxiety - way too little or too much. NDT is really good for Anxiety when you are optimal, I suffered it really all my life but when I get NDT right I feel great.

Fatigue - yes . I need a nanna nap after taking NDT. I use to help with insomnia. Take 30mg about 10pm and sleep till 2am. Then take another 30 and get back to sleep about 3am for a few hours.

Cholesterol/water retention/kidney function/feeling good/fitting into clothes - need to do an hour of aerobic exercise per day. Jog/ swim/cycle. I mix it up so I don’t get too many injuries. Jogging is best for weight loss, it’s the most inefficient means of moving your body possible and requires the most energy . vs walking is the most efficient and requires the least . When we do hard exercise we release endorphins and feel good too. ( after feeling shattered that is). When Iv’e had a break from jogging - because of injury or laziness, I jog and walk and slowly over the weeks I can get back into a 5 km jog run thing - doesn't look pretty but I don’t care what others think.

in reply to jamesal0

On 2 grains of NDT I was admitted to a hospital in the worst hypo state, both ft3 ft4 were below range, so this doesn't apply to me. If you take NDT for 10 years like myself you need to increase it gradually and people end up on different doses.My cholesterol was in range with both ft4 ft3 high in range, so I'm hoping it will level out soon as I increase my dose.

My reverse T3 is below mid range currently, so I doubt that causes any issues.

I have insomnia with ft4 that is too low and ft3 that is too high.

I don't feel like NDT is addictive, it doesn't give me any boost, just makes me feel normal I guess.

Also I have central hypo, so this is like thyroidectomy, I don't have any thyroid function.

Also t3 and t4 in NDT are bound to thyroglobulin, molecularly big protein, which basically makes it slow release, so you don't have to spread it out and it's like synthetic that is bound to sodium. There is a researcher here on site, diogenes I believe, who wrote about it.

Thank you for your comments, but I think we are all unique in terms of what dose we need and why.

goodoldan profile image
goodoldan

I have been on 50 mcg of levothyroxine for almost a year. It helped my high TSH at the time (bringing it from about 10 down to 1.5 or so while also helping my cholesterol and kidney labs), but it has started to creep back up a bit lately (now about 2.1). My RT3 has also been quite high (about 25), but the remainder of my labs are generally OK and in range. My endocrinologist wanted to start me on some T3 to help with the RT3, but I was VERY sensitive to liothyronine when I tried that (5mcg, prescribed by my GP at the time) about 5 years ago and it put me in the emergency room the same day. Still, I agreed to try a very small amount of liothyronine again (1/4 of a 5mcg tab, about 1.25 mcg). I felt terrible for a day or two and had to stop.

Fortunately I have a great relationship with my endo doc, so very recently I suggested to him that maybe we could try a bit of NDT to add some "natural" T3 in order to combat the high RT3 instead. He agreed, so I started at just 1/4 of a 15mg (1/4 grain) NP Thyroid tab daily, which contained 0.56 mcg of "natural" T3. That seemed to be tolerable, so over the past few weeks I've been able to raise the dose of NDT while figuring out the best timing. Right now I'm taking a full 1/4 grain (15mg) tablet of NDT daily... half at bedtime (11PM), and the other half about an hour before lunch at 11AM. I take the 50 mcg of levothyroxine/T4 when I wake up at 7AM, and then wait an hour before food or supplements. I can feel some effects, but they are not such that I would need to discontinue this program. My next labs are in a few weeks, and we'll see how things are going. Hopefully this may help get the RT3 under control.

As I continue to try and increase the amount of NDT in small steps, the plan is to start decreasing (and ultimately discontinuing?) the levothyroxine T4 by an equivalent amount equal to the T4 supplied by the increasing NDT dose (all while watching my labs).

in reply to goodoldan

Thank you goodoldan, this is very helpful, I hope this goes well for you! Like you, synthetic t3 never made me feel good same for t4 on its own, but NDT really is a smoother ride. However, not yet sure how to balance it yet, I know some people add some Levo to make it work.

pennyannie profile image
pennyannie

Hello Twitchycheek :

No thyroid hormone replacement works well until your ferritin, folate, B12 and vitamin D are maintained at optimal levels :

Do you have any blood test results to share with forum members ?

On NDT you dose to the relief of symptoms and not a blood tests or % through ranges;

T4 likely goes down from when on synthetics but T3 should go up :

How much and when are you taking your NDT :

Did you take some bench mark readings before you started and know where your T3 and T4 sat prior to this experiment ?

in reply to pennyannie

Been on NDT since 2012, all worked fine, until a while ago, when my ft4 dropped low, ft3 is high. I am aware that vits make conversion possible, I have researched it years ago. Been supplementing since 2012 and get tested every 3-6 months. I started to get hypo and this is when I got bloods done. Only thing has changed is very low ft4. Talked to couple of thyroid advocates and one of them takes levo with Armour. Hence my question, have you experimented with levo and NDT? Apparently it is not uncommon for ft4 to drop and some feel fine with it some not, this is why I'm curious of people's experiences.

pennyannie profile image
pennyannie in reply to

When on NDT only it is not unusual for T4 to drop lower in the range than when on synthetic T4 - Levothyroxine.

My T4 has gone from 100% down to 25% and my T3 risen from 25% to 110% :

They literally swopped places once I switched from synthetics.

I take this to mean I'm converting well the T4 into T3 :

I have no symptoms of over medication and run myself slightly under medicated.

I have tried adding some T4 but found no health benefit :

However it's academic as the ranges and guidelines were introduced to be used with synthetic thyroid hormone replacement when Big Pharma launched it's own versions of thyroid hormone replacement in around the 1950s/1960s.

NDT was the treatment of choice and successfully used for over a 100 years to treat hypothyroidism, long before blood tests, ranges, and guidelines.

Doctors simply treated symptoms with a little nugget of dried pig thyroid for people would chew and if the nugget size didn't resolve all symptoms, a larger nugget was given and it was trial and error until the patient felt better and the dose found that suited them.

in reply to pennyannie

I think you can't judge conversion when you are on NDT at all, your body simply absorbs it this way, because of high ft3 your body takes less ft4. Also, with ft3 at 110% you most likely have a suppressed TSH, which reduces deionidase to minimum, which is responsible for conversion, as there is an endogenous hormone supply.Sure, some people feel good on low ft4, but it doesn't seem like everyone does. Please check thyroid advocate Invisible Hypothyroidism and other posts on this forum of people who have high ft3 like myself, but low ft4 and feel unwell.

I am not for how long have you been adding t4, but it takes time, and yes, in the beginning you can get pains and they do go away. I have been on added t4 for a year now.

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helvellaAdministratorThyroid UK

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